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Half of Early-Stage Breast Cancer Survivors Don't Finish Therapy

By July 4, 2010

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After having early-stage breast cancer, I was prescribed hormone therapy.  Many of us take Tamoxifen - an estrogen blocker, or aromatase inhibitors like Aromasin, to prevent a recurrence of breast cancer.  I took Tamoxifen for 2 years but when my oncologist was certain that my medical menopause had turned into natural menopause, he switched me over to Aromasin.  Both hormone therapies have side effects - hot flashes, joint pain, fatigue, vaginal dryness, and osteoporosis.  Those aren't pleasant, but neither were the side effects of chemo - something I would gladly avoid again!  When faced with the spectre of a possible recurrence, I thought I'd rather have 5 years of chemically-induced hot flashes than find another breast lump and face more surgery, chemo, radiation.  The trade-offs seemed like a no-brainer.  So I was surprised to read that just about half of all women who are supposed to take these therapies quit before their 5-year prescriptions expire.

Scientists in New York and California studied 8,769 early-stage breast cancer patients with estrogen-fueled tumors to see how well they stuck to their hormonal therapies after primary treatment was completed. The results of their study was published in the Journal of Clinical Oncology on June 28.  They looked at pharmacy records and refill dates for hormonal therapy prescriptions for these patients between the years of 1996 to 2007.  Most patients are prescribed 5 years of hormonal therapy.  In this study, almost all patients ordered and refilled their hormone therapies for the first year after primary treatment.  Women under 40 - the very patients with the longest life expectancy - were the ones most likely to quit taking their medication before the 5 years were over.  These accounted for about 49% of the total of all patients in this study.  Patients who were married, were treated with chemo or radiation, came from Asian families, and got their refills at 90-day intervals tended to complete their hormonal therapy.  Researchers would like to understand why younger women don't always finish their 5-year follow-up hormone therapies, because those patients should have the most success in avoiding a recurrence.

While I did finish my hormone therapy, it was a battle sometimes.  I wanted the hot flashes to stop, I wanted my bones to be healthy, and I wanted to feel more like a normal female again.  But I stuck to the pills because I felt there was still lots to live for.  I wanted to do whatever it took to continue to survive without another round of breast cancer.  The study's researchers found that in addition to avoiding the side effects of hormone therapy, women sometimes quit because they didn't really understand why they needed to take these medications, or the prescriptions cost too much, or insurance copayments got to be burdensome.  I can think of other reasons that a woman under 40 would skip these pills:  estrogen blockers can reduce fertility, lower libido, cause endometrical thickening, and contribute to the formation of cataracts.  Even though none of those conditions is as bad as having breast cancer, what many patients really want is to get their life back after breast cancer - they don't want a daily pill to be remind them that cancer may lurk in their future.

After primary treatment, breast cancer patients will visit their oncologists at regular intervals over that 5-year period when they are supposed to be taking their hormonal therapy.  During those visits, the doctor will check for signs of recurrence, take vital signs, and do bloodwork.  Perhaps they should also be asking if patients are taking their hormone pills.  "Physicians are often unaware of patient compliance, and this is becoming an increasingly important issue in cancer," said the study's leader, Dr. Dawn Hershman.  While oncologists are doing all they can to help patients avoid a recurrence, it really is up to each of us to guard our own health. If the cost of hormone therapy or the side effects is getting you down before your 5 years are up, ask for help getting the medications or coping with the side effects.  Your future health is well worth taking those little pills.  Hormone therapy isn't magic and sure isn't a guarantee, but since it should protect you - please finish your therapy.  You could save your own life.

Cast Your Vote: Reason you would stop taking hormone therapy

July 9, 2010 at 10:56 am
(1) Lauren says:

So true- therapy needs to be finished. If your having a tough time finishing it its ok to reach out for support. There are Cancer Support Communities all over the country providing support groups and activities to help you through.
(Cancer Support Community, The Wellness Community, Gildas Clubs, etc)

August 6, 2010 at 7:15 pm
(2) Pam says:

I can fully understand why someone would stop. It’s pure hell on some people’s body. I am in constant unbearable pain,every joint & muscle is always swelled up & in terrible pain. I have permanent heart, bone and nerve damage. I never sleep, I have two different ringing sounds in my ears, migraines everyday, extreme dizziness. Plus, I have 2 kids to raise, in addition to doing all the cooking, cleaning, shopping. Support groups aren’t as easy to come by as they let on. There’s no support group for women my age in my area. I’ve called several cancer websites and got nowhere. Yes, I know firsthand why someone would want to quit their therapy. It could save your life in a different way!

September 9, 2010 at 1:49 pm
(3) Joan says:

God, what a smug, unsympathetic article. As someone who’s at the halfway point of taking these aromatase inhibitors, I can tell you that they’ve turned me from age 56 to age 86 overnight. I had Stage 1 Breast Cancer, no sentinel lymph node spread. I took the full course of radiation and declined chemotherapy and am now seriously considering stopping this drug therapy because the side effects–bloating, huge weight gain, elevated cholesterol levels, shortness of breath, and undue stress on the joints as a result of the weight gain, are a living hell. I will continue to get monitored and have regular mammograms, etc, but to have to live with this for FIVE years at the prime of one’s life is no life at all. If my cancer had been more advanced, I might think differently, but I’ve given this my best shot and it doesn’t seem worth the price. These drugs have less than a 10 year history of being prescribed, and we are all being used as guinea pigs. I’m happy to contribute my bit to science, but enough is enough.

October 25, 2010 at 9:11 pm
(4) Jean says:

I agree with Joan. When such a large number of women quit taking AIs, I don’t think they are being flippant about cancer or their survival. I think that the cost of “lowering” the chance of recurrence becomes too great. People define for themselves what they want their life to be. Life isn’t just breathing. My breast cancer is the same as Joan’s stage I-clean nodes. I’ve battled a different cancer before about 20 years ago and went the whole 9 yards. I was also misdiagnosed a few years ago and given a few months to live. In the few months it took for them to figure out they were wrong, I learned that for ME, Quality was more important than Quantity. Let’s not JUDGE people with cancer. Everybody is managing the best they can.

November 8, 2010 at 6:43 pm
(5) Becky says:

Joan, I, too, agree with you. I’m a 36 year old breast cancer survivor currently prescribed Tamoxifen. I have been through much pain in the past four years due to various tragedies and loss, but I couldn’t feel more miserable than I do after taking the drug for nearly 7 months. My periods are beyond miserable. I have nil sexual desire. I’d just soon remove those parts of my body at this time. I have gained 10+ pounds. I’m not a pleasant person to be around, which is completely unlike my personality. I’m tired. I have little motivation. I battle a nausea and occasionally vomit out of the blue. I’m one to typically trust my medical support team, knowing that they are the experts. But, I am miserable and can not continue this way.

December 28, 2010 at 11:52 pm
(6) Debbie says:

I agree with all of you who have posted comments. This article is indeed judgemental and dismissive of the leagues of women who are being used as guinea pigs. I have decided for the second time in 11 years, to opt out of hormonal therapy. For me the first time on Tamoxifen caused me to have such severe uterine bleeding I had to have emergency surgery. That was after only 2 months of treatment. My second bout of breast cancer came 11 years later and am not going to continue with treatment due to s/es. I have battled depression my entire life and these medications render my unable to function. My oncologists are not supportive of my decision but they are also not offering to support me when I am unable to work due to depression. It makes me really sad and frustrated that after 11 years I still have no options. I know I’m not the only one. You’ve got to do what’s right for you!

February 7, 2011 at 4:56 pm
(7) Anne says:

I’m 43 and recently diagnosed. I had a lumpectomy a week ago. My oncologist was surprised when I declined the Tamoxifen. I’ve battled depression my entire life. I find the side effects listed for this drug to be worse than the cancer itself. The depression would kill me long before the cancer ever would. I’ve not had a lot of support from my doc or my family about this. I’m glad to see there are others out there who are standing up and refusing this ‘standard’ therapy. My oncologist even admitted that the mortality rate between those who take the Tamoxifen and those who don’t is no different. Makes you wonder why they would even prescribe it!

February 7, 2011 at 8:01 pm
(8) breastcancer says:

If you are menopausal, there’s no need to take Tamoxifen – try an aromatase inhibitor like Aromasin instead. Be careful about which antidepressants you use while on an aromatase inhibitor – some of those will cancel out the benefits of the aromatase inhibitor. Example – don’t take Zoloft and Tamoxifen – they effectively combine to have no effect when taken together. But if using Effexor and Tamoxifen – those work well together. Not sure if you’re menopausal? Have a blood test at your ob/gyn and make sure.

February 26, 2011 at 5:27 pm
(9) carol says:

I too had stage I with clear nodes. I have been taking tamoxifin for 2 years. I put on 2 and half stone, I felt like all the energy had gone from my body. My back aches sometimes so much I cant move. Had operation to help with tamoxifen caused bleeding .I felt so tired all the time with no energy or interest.

Sometimes I can not believe how I have changed over 2 years. I have been temporarily taken off tamoxifen to see if my side effects reduce, however now they can not decide whats next as there seems to be an issue deciding IF I am menapausal…. So now I have to wait to see what is next.

I could happily never take another pill…I dont think unless you have been here that you can truly understand the issues.

April 1, 2011 at 10:34 pm
(10) jamey warren says:

I am at the 5 year mark and am now worried about the unknown side effects of taking the estrogen blockers—bones, joint issues, increased cholesteral…at some point, you have to worry about all that too. AND THE COST—someone mentioned getting help–where does that come from? I have taken Femara for nearly 5 years and the cost is skyrocketing–nearly a 40% increase since I started it. What is the increase based on? I am so angry about being gauged for the out-of-pocket cost, that I have considered changing to Arimidex but this drug has worked and it’s scary to switch. Almost every time I fill a script, the price goes up. I have other body parts to care for in addition to my two breasts (sorry-one is am implant.) I had lymph node involvement in one node and have been told I may need to stay in the blockers longer. I Thank The Lord for being alive…the cost makes it difficult to afford the drug–women are getting ripped off!

April 19, 2011 at 7:20 pm
(11) Linda says:

I just finished radiation a month ago and was started on Arimidex immediately afterwards. Can’t take Tamoxifen as I have a blood clotting gene and blood clots and strokes are potential side effects of that drug. Seems crazy to give a drug that has side effects so dangerous it can give you a stroke just to potentially lessen the risk of cancer coming back?

After one month on the Arimidex I felt like I was 80. I’m 51 and was diagnosed with early stage breast cancer which had not spread. Onca score was 13 so only seven weeks of radiation. I have RA and thus likely the side effects of all of these drugs is going to be the same for me.

I’ve had debilitating joint pain, muscle aches, sleeplessness, hot flashes and night sweats .

I asked my doc point blank what the difference in outcomes might be for me if I quit. He said it doubled my personal risk of the cancer coming back. My cancer recurrence rate based upon onca type and tumor testing was 9%. So I have to ask myself, it is worth it to have an 18% risk of it coming back and not have a life limited by the pain and side effects of the drug?

Like many of you who have posted here I have easily come to the conclusion that quality beats quantity of life. What’s the point in living in constant pain?

April 27, 2011 at 11:26 am
(12) Carole says:

Hello everyone,

I have made up my mind.
Diagnosed in December 2010 with a stage II ductal carcinoma (invasive grade 2 ER+ PR+ HER2-), actually on chemo (FEC & Taxotere), lumpectomy in July & radiation in September. So far I’m good with that.

Since a couple of weeks, doing research and having a genuine interest in what is happening with my body, I have this feeling in my whole being concerning hormone blockers, this incredible, almost religious feeling: ‘Thou shalt not take Tamoxifen, Femara or Arimidex’.

Today, I have made up my mind. I’m only 30, and I agree with the post that we are in the prime (well, almost :-) ) of our lives! Even if I were 60, I would not inflict anymore on my body.
I will not take anymore chemicals. I am willing to live without sugar, soy, alcohol, all those things that I have willingly given to my body knowing it’s cancerous. I am willing to give up my not so healthy job (flight attendant working many nights and getting radiation from the ozone), but not my body, not for this, not anymore.

Come what may.

April 28, 2011 at 11:10 am
(13) Kara says:

Stage 1 HER2 positive – 39 years old in July 20, 2006

Please dont stop taking the meds. I was a fool and couldn’t handle the side effects of the pill so I stopped and my cancer came back in my bones. I have been fighting this since December 13 2008. I have been given so many different drugs but this cancer is smart and finds it way around the new drugs..Im in so much pain my bones keep on cracking but this doesnt compair to the mild discomfort I had with the estrogen blocker. I wish I would of known maybe it would not have come back.

August 31, 2011 at 11:34 pm
(14) m costello says:


September 23, 2011 at 9:56 pm
(15) carla fuller says:

I was diagnosed with breast cancer at the age of 37,and lost my own mother to breast cancer when she was only 59.I have 2 daughters who were only 4 and 7 at the time I was diagnosed.So I am a nurse and someone who knows how important taking tamoxifen is.With all this in mind I was only able to make it a year,because my Quality of life was not worth it.I stopped with my doctors knowledge,as I became severely depressed and even tried effexor,but nothing worked!I did not take stopping lightly nor do I think any one does!!!!

June 30, 2012 at 8:19 am
(16) Anita says:

I stopped my hormone therapy because it just about destroyed my left hand. I now have constant pain and limited use of my left hand after Arimidex therapy. It has just about destroyed my ability to work, limited my hobbies and causes sleepless nights. It is hard enough to go through breast cancer, but to face 5 years of severe joint pain, ringing in your ears, blazing hot flashes and severe fatugue, is just too much to live with. There comes a time when you have to weigh quality of life to quantity. Besides that, I am not so sure the Arimidex wouldn’t have caused a different health crisis. With all the money donated to cancer research, you would think they could come up with a medication without such severe side effects.

July 29, 2012 at 9:14 am
(17) sally says:

In October 2011 I stopped chemo and Dec,211 I stopped radiation am her 2 positive. The tamoxafin started,damn! I never expected the pains to be so much that I found myself walking with a walking stick my husband made for me.( I had stage 2 lymph node infected too) so this means I’ve only taken this pill for about 8 months,I am ready to stop the pill. I am the only worker at home I am 41 and some days my pain keeps me home and have a risk of job loss as my job is not tolerant. I wonder what the statistics are of reaccurance if I stop.

August 6, 2012 at 10:36 pm
(18) Eileen Montgomery says:

I have been on Tomxifen for a year, diagnosed with Stage I, no lymph node, so small the surgeon said that there was not enough tumor tissue to do the test for recurrence rate. 3 weeks radiation, so why do I need to take Tamoxifen? Was already post menopausal, but the depression is horrible,dont feel like doing crap, husband ready to leave, and I keep thinking I may just go off of it. No real family history of it, life needs to be of some joy, or what does it really matter.

August 10, 2012 at 7:01 pm
(19) Marie from Michigan says:

I have been on Tamoxifen for over 2 years, dx with Stage 1 at 49 with double mastectomy & reconstruction surgery. All nodes were negative. I have also reached the point that I cannot tolerate the side effects anymore. The hot flashes, lack of sex drive, intolerable headaches, inability to concentrate and no sleep have just gotten so horrible that my quality of life has diminished to the point that I don’t know if it is worth it anymore. My Oncotype score was 13 ….so ultimately, taking Tamoxifen would reduce my chance for re-occurence to less than 3 1/2%. My quality of life and enjoying the life I have now is worth more to me than that. I’m just miserable on it and it is very scary to stop it but I want my life back.

August 29, 2012 at 1:17 am
(20) Kristine says:

Thank God I’m not alone!! I’m 38 and a surivor for 1 year and I stopped taking Tamoxifen about two weeks ago! I just want my life back. I still feel so tired and I still have hot flashes. I just hope that when it all gets out of my system I can have my life back. I would have never started taking this if my doctor would not pushed it so much..almost telling I had to take it.

September 6, 2012 at 7:38 pm
(21) Wendy says:

I would like to know if there are any studies or articles about women who do not take tamoxifen or AI following stage I IDC with negative nodes. CAn anyone point me in that direction, where to look, if there are any studies about not taking those hormone therapies. Thank you.

September 25, 2012 at 8:35 pm
(22) Gerri says:

I had surgery last March for Stage 1 DCIS, low risk, no lymph node involvement. Yea! I tried Arimedex and had terrible side-effects and quit it. I’m not on Tamoxifen and having different side-effects…want to cry all the time, light-headed, angry and more. I haven’t taken the pill since Sunday and already feel better. But I feel guilty about not taking it. Taking it really makes it hard to work and enjoy life. Thanks for everyone’s input.

October 22, 2012 at 7:35 pm
(23) Jamey says:

I have taken Femara for 6 years and will probably be on it another two years, or until research shows how effective it is. I had lymph node involvement on 1 node, Stage 2 ductile carcinoma and Pagets disease of the nipple. I haven’t had extreme side effects from Femara but in general, I feel like a zombie at times. It may be from the chemo-induced menopause but I suspect that Femara has changed my energy level. I truly believe that I will feel better if I ever get off the drug but then will worry about living the rest of my life free of breast cancer. My body temperature is all over the place–HOT AND COLD. I have often wondered if you can die from the extreme temperature swings. I drink water all night and then don’t sleep well. I am thankful for my excellent health again but I can’t wait to be off the stuff. AND no one mentioned the COST! It just went generic and I paid up to $2,000 a year out-of-pocket (with insurance!)

November 21, 2012 at 10:47 pm
(24) Ria says:

I was diagnosed a year ago today with Stage IIa grade 1 IDC, Chemo, taxol and a bilateral mastectomy no lymph node affected. I have been taking Tamoxifen since 8/26, I feel like I am 80 years old I am only 46. My last period was last year before my treatment started on 12/30.The treatment shrank my tumor from 4.2 cm to 1.9 cm and changed my Stage to 1. I now have to take 2 pills just to take the 1 white pill. I can’t sleep I take half an Ambien at night with an anti depressant pill for my moods and emotional being. I have no libido, vaginal dryness. If I wasn’t married I probably wouldn’t care, but my quality of life is not my life anymore, I am always tired, can’t think straight, eyes are dry; mouth is dry all the time. The only good thing is that I haven’t gain weight, I have actually lost weight. After a lot of soul searching I have decide to stop after I have my next Dr’s appt. I figure that getting cancer was predetermined when I was born the way and how long I will live and what I will die from has been predetermined by God. I figure I can live my life to the fullest and pray to God that I live a long and manageable life until he calls for me.

November 29, 2012 at 10:15 am
(25) Marie from Michigan says:

Ria & Gerri – I totally understand the position that you’re in because I’m there also. It’s been horrible making the decision to stop the drugs but yet I can’t imagine continuing them either. I have been off the Tamoxifen since August and finally, finally I’m feeling like my old self. I can think clearly, I’m finally sleeping a little bit better, I have more energy and less aches & pains in my knees & hips. However, even though I’m feeling much better physically, I still worry so much about the risks or probabilities that I would get a recurrence. There is a lot of guilt associated but I think you have to make an individual decision and move forward. Good luck to you ladies – I hope you continue to feel well and be healthy!

December 9, 2012 at 8:06 pm
(26) mary says:

I just read all the comments here and I’m so happy I’m not the only one out here feeling like crap on this tamoxifen. I have stopped it after 3 yrs, in September. But I’m still have the bone and muscle pain. UGH!!! How long will this drug be in my body or did it harm me to the point of no return. I’m 47 and feel like 80 most of the time. I have no energy or motovation to do anything. I have decided to have my ovaries removed to put me into menopause. But the last few weeks I have the pain again like I’m on the drug. is there anyone feeling like this after stopping Tamoxifen? Lets keep fighting. Stay strong everyone <3

December 11, 2012 at 4:19 pm
(27) Nikki says:

I stopped taking tamoxifen after four years because it caused my right brain stroke! So, to top off having DCIS I also am recovering from my stroke.Stopped taking the tamoxifen the day it happened and will never take it again, nor will I look into any replacement.

December 17, 2012 at 12:33 am
(28) Patricia says:

I had stage 2 cancer, clean lymph, did radiation but no chemo.. I took Femara for almost 2 years but with all the side effects (all of the above ones mentioned so far) and poor quality of life, I quit it and did not finish the 5 years.

Why do the dr’s not tell us to balance our body’s acidity (too acid causes cancer) and then help us change our diets to one that gives just as much protection as these hormone blockers do..If they guaranteed 100% results then I would take it but there is no guarantee of any kind.

My dr did not say anything when i told him all the side effects i was having and that i had quit it… apparently the “newest” on these is that 2 years treatment is just as good as 5???

By the way, it took a good 6 months for me to feel like it was finally all out of my system. I still need to loose another 20 pounds (lost about 15 of the 35 I gain while on it.. otherwise i feel like my old self again.. I just turned 63.

January 3, 2013 at 5:24 pm
(29) michelle says:

I was 45 when I FOUND MY tumor taking a shower. Nofamily history no exams n boom. Double massectomy, IDCC, stage 2b, 3 cm, lymph involvement. 8 rounds of 2 diff chemos, no port and no reconstruction. I was on zoloft cuz of depression but when it was xfor the tomoxafin i got off. Er/pr pos her2nu neg. I have my 6month check up jan 7th 2013. And i’m a royalbitch sometimes and in so much back pain that was addedto my fibro, and i’m a single mom of the sweetest 4.5yr old girl. Supozidly i can switchto arimidex bymarch of this yr2013 but i really hate the way i sometimes yell at
mylttle girl. This better beworth it. I don’t have too muchdepession because i use a litebox everyday

NATUREBRIGHT SUN PLUS ION LIGHT THERAPY BOX, GO TO AMAZON.COM. ITS ONLY 66.OO ITS BY NATUREBRITE. this is the one i use, give it a week of doing it everday for 15minutes. I hope this helps all my sisters, live long n prosper

January 6, 2013 at 7:51 pm
(30) Heidi says:

I have struggled greatly first on Arimidex and now on Femara. I had stage 2 3 very small tumors, one node +, estrogen + progesterone + her-. uni mastectomy, 6 cycles of TC, Onc type 9. Brca -,osteopenia+. Feel 100 years old. Nothing helps. Now my knee is popping out of joint and needing replacement. My shoulder and jaw are both making popping motions too. I hurt 8/10 in the morning, do not sleep without med, depression, cognitive challenges, serious. On lexapro which does not touch this. There are many more symptoms, i won’t bore you with the details. I decided to take 1/2 tablet of Femara (1.25 mg) after finding s study comparing 2.5 mg with .5 mg. Also is it true that the life expectency is not extended on these drugs, but the recurrence of cancer is decreased by 4-6%…..I am not in charge of my day of death and I want to live happily every moment that I have left with less pain. Thank you women, tons.

January 10, 2013 at 3:09 pm
(31) Andie Marshall says:

Really interesting to read all different experiences, I’m 41 was diagnosed grade 1 nov 12, breast cancer , node negative , two lots of surgery to clear margins , now having radiotherapy awaiting BRCA gene results can’t take tamoxifen due to lupus , onc looking at zoladex or ovary removal , considering what I’m in for going in to menopause , all the side effects , health is already poor with chronic back condition and lupus , not really sure what my options are, have family history mother had grade 3 bc and grt grandmother , should I just do ovary and masectomy ?? Dreading menopause and potentially all that goes with it , have a 7 year old son amazing husband to look after, advice welcomed!!! Xx

January 11, 2013 at 11:36 am
(32) BonnieT says:

Heidi, I wish you the best. I am dealing with Stage 4 breast cancer. was told to either try a new drug or plan for Hospice. Chose the new drug. stomach has a lot of fluid and that will be relieved this afternoon. Not really happy these days, but will stay focus on getting better.

January 11, 2013 at 1:14 pm
(33) Marie from Michigan says:

I continue to read the stories from all those wonderful ladies being affected by the horrible side effects of Tamoxifen and the AIs…..For anyone looking for the pros and cons of taking the drug, I think you need to throughly do all your research, talk to your oncologists and come to a decision for yourself. What might be alright with one person, isn’t the same for everyone. I am a RN and after researching & trying Tamoxifen and 2 different AIs, I have come to the conclusion that my need for a higher quality of life far exceeds trying to take these drugs for the next 5-10 years. I stopped my Tamoxifen in August 2012 and finally felt better, more my old self by December and then my oncologist talked me into trying the 2 different AIs….and I have felt just awful on them. The joint pain, the hot and cold flashes, depression, the inability to concentrate, dizzyness, nausea, inability to sleep…it just goes on. It’s been a really hard decision but I’ve personally reached it…I need to take my chance, concentrate on my health with eating good, exercising, taking my vitamins and hope to God that I won’t be sorry. I need to live for today and tomorrow. I wish you all health and well being as you travel this journey…..we didn’t ask for this but it is up to you on how you want to move forward. Take care!

January 14, 2013 at 6:49 pm
(34) Colette Rouleau says:

I too have opted out of Tamoxifen. I tried it for a few months and ended up feeling dreadful….hot flashes, difficulty maintaining body temperature, hot and cold all the time, pelvic bone pain, depression like it’s not worth living anyway so why bother?…etc. It’s a very very difficult decision to make and I’m terrified to take the med, terrified not to but quality of life ultimately wins….

January 15, 2013 at 2:28 pm
(35) Jan from Dallas says:

I am so happy to come across this site. It can be very lonely and it’s nice to know that we are not alone on this journey. I am 39 years today but at the age of 32 I was diagnosted w/ stage 3C, 2 grade breast cancer. I had 2 lumpectomies for clear margins, 4 months of chemo, 33 rounds of radiation and took Tamoxifen for 5 years. I was off med for 1 year and moved out of state. My new doctor who was more agressive pushed and pleaded w/ me to take Arimidex. My cycles game back 6 months after chemo so in order to make me a candidate I had to be put into medical menopause w/ Lupron. I have been on the lupron for 6 months and on Arimidex for 1 month. Since doing this I have developed osteoporosis, depression, fogginess, joint pain, hot flashes, insomnia, etc…. and the overall feeling of being elderly and miserable. I am taking this to lower my 40% of a recurrence to 26% if I stay on it for 5 yrs. It’s hard to eliminate my 40s physically and mentally in HOPES of staying cancer free. For me I feel like it’s not a guarnatee it just lowers my risk. But even with a lower risk it can still come back. I can’t live in fear. I have to enjoy my life and my family and IF the cancer comes back I will fight it. To be taking the meds NOW that I would be taking IF it came back is depressing. What does one have to look forward to if they are treating like I am sick when I am well. I going to choose to stop but it’s not taken lightly. God bless the ones who aren’t extremely affected by the meds.

January 19, 2013 at 5:23 pm
(36) Leslie says:

Hi everyone,
I was just diagnosed with grade one stage 2 lobular breast cancer in one breast. I tested hormone receptor positive. Going in for a lumpectomy on Friday. I’m 37 years old and have no children but I want them. They do not think this is in my lyphnodes but will have to confirm after surgery. Based on reading testimonials on tamoxifen and other research, I don’t think I will take the tamoxifen, as I don’t want poor quality of life like so many others have. In addition, I’m not going to wait 5 years to try to have children and I want more than one. Unlike many who are faced with this, I have no children and at 37, fertility odds are already against me. I also don’t want that added risk (although small), of uterine cancer, thus a possible hysterectomy and no chance at childbearing. However, I’d like to hear if others have been in a similar situation and then were easily able to have a baby. In addition, I would like to know what the chances are of this coming back in my bones (which I’ve heard it can), and if it does, about how much longer I can expect to live. I also do not want chemo which will jeopardize my fertility once again. Thank you all for reading and I do realize individual circumstances and outcomes can vary.

January 26, 2013 at 4:25 pm
(37) Dana says:

Diagnosed Aug 15th 2011 — at age 44 Invasive Ductal Carcinoma – Grade 1 / Stage 2B Sentianl Node 2.2mm involvement. 6 months of Chemo, no radiation, double mastectomy, Complete Hysterectomy, DIEP Flap rebuild and port removal on November 20th 2012. Did the Hysterectomy because I knew I wouldn’t take tamoxifin and I was still pre-menopausal. So, they want me to take aromatase inhibiter and I have been miserable! I am not doing it anymore. I feel like an old woman stepping out of bed, my hands are pulling in and my thumb clicks painfully. I am seeing an ortho and rhmatologist in two weeks. Off the drug for a month, but still feel like I am 100 years old. I had an infusion of Zometa back in October, not sure if that is also causing paint in my joints. My oncologist at Vanderbilt said Zometa will keep my bones strong but that infusion gave me the aches and pains for about 48 hours afterward. I just turned 46 and have a 7 and 10 year old. I refuse to let this get me, but also can’t take the side effects of these drugs. Anyone taken Zometa? Could that be making me hurt too? I have no relief from Advil or Aleve. I pop them like candy!

January 28, 2013 at 12:14 pm
(38) Stephanie says:

I agree this is a unsympathetic article. I have battled stage 1 breast cancer and I have played the cycle of bilateral mastectomy, chemotherapy, tamoxifen, ended up with a hysterectomy with ovary removal, because of not being able to take tamoxifen. I have tried all aromatase inhibitors with very poor results. After 3 years of trying so many medications including antidepressants, herbal things, etc. I have decided it is low dose HRT for me. I believe that living like this is true Hell on earth, and if it means a recurrance and shorter life so be it. It will be better than 40 more years of this mess. My regret is letting them take my ovaries. I should have let it ride after chemo. I was 40 years old and now function like a 65 year old. Not to mention a recent hip fracture. Yes. I take many vitamins, exercise, etc. it is HRT before I am in a wheelchair from bone loss. Enough is enough. Quality of life is more important than Quantity. My family understands this and I with Oncology would look more at this issue. Lastly, I am a nurse and I am we’ll aware of the risks I am taking.

January 30, 2013 at 1:54 pm
(39) Teresa McCormick says:

I just wanted to be myself again! I was sick of being sick!

January 31, 2013 at 6:28 pm
(40) Sandra says:

It’s good to know I’m not alone in dealing with this decision. I have been on Tamoxifen for 1 1/2 years now, and have had severe hot flashes the whole time. Up to 18 a day, and terrible night sweats. Now I’m also having a lot of pain in my joints. Especially my hips and back. I groan like an old lady every time I sit down or get up. I have been thinking a lot about stopping this drug. Like a lot of you, I struggle with whether the benefits are enough to outweigh the damage it is doing to my quality of life. I don’t know yet what I’m going to do, but today I’m leaning towards stopping. I was on Effexor for the hot flashes for a while, and it did nothing for me. Now I’m trying Gabapentin, and it helps a little. Doesn’t get rid of all the “flashes”, just some. (from 18/day to 10) And it has side effects, too. It makes me tremble/shake and my muscles are sore. I’m very frustrated that there isn’t something better out there.
I wondered if the aromatase inhibitors would be better, have less side effects, but it doesn’t sound like it.
I’m 49, diagnosed Feb.2011, stage 1 IDC, negative lymph nodes, Er/Pr +, Her2-, lumpectomy and radiation, no chemo.

January 31, 2013 at 8:48 pm
(41) Lisa says:

After almost a year after finishing radiation therapy for stage 1 DCIS I am so discouraged to find myself dealing with issues of severe vaginal dryness and the inability to have sex due to extreme pain which is the result of being on Tamoxifen. The treatment for this is a low estrogen cream or pill to be inserted vaginally, but because my breast cancer was ER+, it poses a risk of increasing my chances of getting breast cancer. My Dr. wants to switch me to Arimidex (this is before she knew about my issues), but I’ve already decided that I’ve dealt with joint pain for many years and I will not risk getting worse by taking this medication. Also, I don’t think changing will resolve my issue either because dryness is also a side effect of that medication. This is a quality of life issue for me, I am so uncomfortable all the time and I am only 50, too young to think about never having sex again! So I am trying to do my research and I am asking myself, should I just stop taking Tamoxifen thereby possibly increasing my chance of a recurrence of BC, or do I take the low dose estrogen treatment, thereby increasing my chance of recurrence? I feel I am in a catch 22.

I appreciate finding this site and reading everyone’s comments. When you are dealing with cancer people find out and they check in with you and ask how you’re doing and once you are cancer free and done with treatments, it’s back to status quo, But now with these issues I feel I am suffering in silence, I mean, it’s not something you talk about. When I first started Tamoxifen the only side effects I really noticed was the hot flashes and I had some leg cramping. The hot flashes cause me to wake up at night and I can’t get back to sleep. Now that I am researching my dryness issue, I’ve come to realize that yes, I’ve gained weight, I feel tired and have little motivation to do things I generally like to do. I just haven’t felt like myself since my diagnosis and I really just want my life back.

February 15, 2013 at 1:10 pm
(42) Kelly says:

I am so lucky! I have been taking Arimidex for almost 3.5 years and my only complaint is having trouble losing the weight I gained with chemo. I have the BCRA1 gene and was at my first appointment with the Canadian Cancer Society to make a plan and sort out my options to reduce my chances of getting breast cancer – what a surprise at that first appointment they found a large lump that was Stage 2 IDC [no node involvment discovered]. I had a lumpetcomy, 6 rounds of aggresive chemo, a bi-lateral mastectomy with DIEP reconstruction, ovaries removed and then started on the Arimidex. I had no idea that so many people suffer from the side effects that were discussed with me. My hot flashes started during chemo and then continued with the ovary removal – so I couldn’t even attribute all of those to the Arimidex! I still have hot flashes, but they are decreasing over time. When I think about what happens after another 1.5 years on Arimidex I’m torn – part of me is excited that the weight loss will be easier and maybe the hot flashes will stop; the other part of me starts to freak out that my “security blanket” Arimidex protection will be over and then I’ll be on my own. I try to avoid soy like the plague but it is in everything – holy cow. I am so sad that so many of you are suffering. take care

February 16, 2013 at 10:56 am
(43) Claire says:

I’m coming up to 5 years of taking Tamoxifen following lumpectomy, radiotherapy, Zoladex for Stage 1b, Grade 2 10mm IDC, ER/PR+, HER2-, no nodes, and I can’t wait to stop taking it. I want to feel normal again, whatever that is. I’m post menopausal due to hysterectomy/removal of ovaries 3 years ago – endometrial hyperplasia caused by Tamoxifen.

I’ve also asked myself the question whether it was worth putting myself through this for a low grade/low risk cancer. It felt the right thing to do at the time to prevent recurrence but 5 years down the line I’m left with all the side effects mentioned already by others as well as a marriage that has felt the strain (understatement). I’m 51 but feel 81.

I have my last 6 month review with the breast surgeons next Friday. I’m going to ask about low dose HRT and/or oestrogen pessary. I had a low risk ER/PR+ cancer, I have no ovaries so I’m not producing oestrogen, so what’s to lose? I think there’s everything to gain :)

Good luck everyone with your decision – you are all individuals so do what feels right for you xx

February 20, 2013 at 3:00 pm
(44) Sue says:

July 2012 I was diagnosed with Grade 2A Infiltrating Ductal Carcinoma ER/PR+ no node involvement. My surgeon told me that based on ER/PR+ I could never take HRT.

For those ladies wondering about survival statistics in regard to taking or not taking Estrogen inhibitors your Medical Oncologist can access a software package input your diagnosis and general health etc and produce stats . Its called “Shared Decision Making”. I found this useful when deciding on chemotherapy. Chemo alone gave me an extra 4%. Hormone therapy alone gave me extra 7%. As my main concern was secondary breast cancer (when the cancer escapes the breast through vein involvement or lymph node involvement) chemotherapy was a given. I also had 7 weeks of daily radiation treatment.

I also went on Hormone treatment “Arimidex”. After just 4 weeks I had constant hot flushes, fluid retention, bloating, indigestion, flatulence, stinging vagina and painful sex. Worsts symptom – mood swings – emotional, aggressive and weepy. I also knew I may be in for heart disease and osteoporosis and painful bones and joints. This drug also interacted with my thyroid medication and I started to get depressed.

I went off this drug 4 weeks ago. I now feel fit and fabulous! I have embraced the “wellbeing” lifestyle of eating well (cancer diet) and exercising every day which includes walking and weight bearing exercise. I have already dropped a dress size. I am full of energy, enthusiasm and can’t wait to get on with the rest of my life. I am meeting with my Medical Oncologist next week to discuss the matter further. I have to weigh up stats -v- quality of life. At the moment my gut is telling me that what I am doing now is the right thing for me.

Good luck everyone.

March 4, 2013 at 5:53 pm
(45) sharon boggs says:

After lumpectomy and 28 radiation sessions i was put on arimidex. After 2 years of fatigue, weakness hot flashes and the list goes on and on of horrible side affects I have decided to stop these pills. For me the worse side affect is vaginal dryness which has caused me to have numerous bladder infections. The vaginal pain is so bad, not only can I not have relations with my husband, I can’t wear any clothing that is tight there, not even underwear. None of the doctors seem to want to help me, they just say it is because of the pills so I have decided to take matters into my own hands. I am 62 years old and I want to feel like a woman again. I am terrified the cancer may come back but the pills are no guarantee either.I pray that I’m doing the right thing because I am tired of feeling so bad when I’m supposed to be cured now. Thanks everyone for your input because it helps to know I am not alone in this. Everyone stay well!

March 6, 2013 at 4:59 pm
(46) Cathy says:

All of your comments are very helpful ! Does anyone know anything about cell study that reveals if the cancer cells reacted to HRT and therefore, would not be HR+ if the patient did not take an HRT?

March 7, 2013 at 5:56 pm
(47) linda says:

There are many good valid reasons why, after even one month, as is my case, a person would throw this drug in the trash. The side effects are horrible, and some threaten life. I have done all the”right” things. Had surgery, did radiation, and thought it would be enough. Stage 1 breast cancer with no lymph node invasion, clean margins, etc. Why the hell would any Oncologist prescribe the same amount of medication to all? One size does not fit all! I was always accepting of tradition medical treatment, but after one month of hell with Arimidex and Aromasin, I will only take what does not cause “death” as one of the “common side effects”

March 12, 2013 at 12:22 pm
(48) Heather Balazs says:

I am 44 years old. I was diagnosed with stage 4 breast cancer when I was 40 years old. I went through 8 rounds of intravenous chemo through a port because my veins collapsed. I had a double mastectomy and reconstruction. I am now on year 5 of taking Tamoxifen. As the years have gone on I definitely have more good days than bad. Randomly throughout the months I have days of feeling like absolute crap. About twice a year I get very sick where I can’t function. If I move my head the slightest I throw up. I am very sensitive to light, have uncontrollable tears, hot flashes, cold flashes, insomnia, sensitive to smell and just in general feeling like a bag of crap!! I am on day 5 of one of these bouts and am getting very depressed about it. I know it won’t last and I have to talk myself into taking that little pill every night. I figure I have done 4 years out of 5 and as Shania Twain wrote “I aint no quitter”. These blogs do help me to know that I am not alone and that I am not crazy in my head!!!!

March 12, 2013 at 3:40 pm
(49) Louise says:

I was prescribed Arimidex last week by my Oncologist. I was diagnosed with Stage 2 lobular breast cancer, ER positive, lymph node negative. Thankfully chemo has not been recommended but I am absolutely dreading starting this prescription. Reading the comments on this site have reinforced my decision but I am feeling like I need more info about the possibility of cancer returning if I don’t take this medication.

March 17, 2013 at 4:08 pm
(50) Ruthie says:

Hi ladies:
I was diagnosed March 1, 2012 with Stage IIA estrogen positive breast cancer. I had a partial mastectomy and another surgery to clean the margins to remove one small lobular tumor, one small ductile tumor and one lymph node.I had twenty weeks of chemotherapy that i thought would kill me. It was so nauseous that I lost forty pounds. after chemo, I had thirty-three days of radiation. On December 24th, I started with Letrozole. I had so much body ache, that I was switched to Anastrozole. Now the Anatrozole is causing more nausea and body ache that when I had chemo and radiation.My oncologist doctor told me to get off the drug for two weeks. It looks like I will have to go back on either the Letrozole or Anastrozole no matter how I feel for five, maybe ten yeaars. The only thing that helps with my nausea is Marinol (Synthetic Marijuana). It works pretty well but I live in a very conservative state so getting the real stuff isn’t readily available as it is in California and Colorado. Insurance does NOT pay for the drug. It is $240 for thirty capsules. Dexascan and have no osteoporosis YET. Has anyone with the nausea and body ache used acupuncture to help with these side effects?
Hoping to feel better in a few months after using the Aromatase Inhibitors for three months.

March 21, 2013 at 7:12 am
(51) Jo says:

I am a 69 year old 12 year survivor the first time and in June had another lump on the other side. Both were HER positive and very early and small. I had chemo and rad the first time and took arimidex for five years with only joint pain and memory problems.This time I only had rad because the node removed had a Onco number of 10 so it called for rad only. But at that time I was a very busy mother of teenagers and in very good shape physically. This time I am 12 years older and having lots of side effects – weight gain, memory problems, big time sweats and then chills and fatigue that has me taking naps in the afternoon – had never done this in my entire life. Today I have an appt with a heart Dr because of chest pains and a difference in an ekg from three years ago. My gyne also is concerned because I have osterpenia and feels that the Arimidex may really hurt my bones and even with lots of calcium I will be in trouble…..so I stopped the Arimidex a week ago……we’ll see what happens. The PA at my oncologists office suggested that I stop to see how I feel. I have an appt with my oncologist in May – that was the only appt available – even after a call – was told that he as unavailable until then. I’m having a hard time trying to make that decision time vs value so we’ll see what the heart Dr says then maybe I can make this decision.

March 25, 2013 at 4:34 pm
(52) Sharon Boggs says:

Louise, everyone is different and you may not experience any side effects at all. I would never tell someone they shouldn’t take the pills if they are reccomended. I really wish I could have continued to take them but my side effects were unbearable. That however doesn’t mean it will be the same for you. Best wishes for whatever you decide.

April 12, 2013 at 3:57 pm
(53) Debbie says:

I was diognosed with stage I infiltrating duct carcinoma. Am now waiting for results on the Onco type DX breast testing. Has anyone else had this test done,and how long did you have to wait for the results?

April 22, 2013 at 2:04 pm
(54) Regina from FL. says:

I am a 7 year breast cancer survivor I was diogonased at the age of 42 stage 1 I was told thay my hormones was feeding my cancer and 3 surgies later 6 rounds of chemo and 7 weeks and 1 day of radations I was told that I should consider a TOTAL hysterectomy..I was thrown into menopause over night I also took Tamoxifen for about a year and my body hurt all the time I had so many test run they even diogonased me with fibromyalga, the doctor’s that was seeing said that it was all in my head.I also took Arimidex. I took both drugs for about 2 1/2 years and I told my onc. that I was comming off all drugs and I did.. My hot flashes, night sweats, NO sex drive, sleepless nights,weight gain,and get more depressed everyday…My body and joints feel better but I was left to deal with the aftermath of the hysterectomy, let me tell you not a pretty picture..If I had it to do over again I would never had went through with the hysterectomy.I am trying to see someone now and talk to them about getting on a medication that will help me deal with everday life..

April 27, 2013 at 10:17 am
(55) Jenny says:

More and more women are choosing to have a double mastectomy to reduce the risk of another breast cancer, and to avoid radiation and hormone therapies. I chose the surgery for those very reasons. I was post menopausal, node negative, stage one with multiple DCIS locations for estrogen and progesterone positive breast cancer. A low Oncotype DX genetic profiling score helped me to be at peace with the decision to forego additional therapy. A double mastectomy, (and a hysterectomy if applicable) might seem aggressive, but perhaps not as aggressive when side effects of alternative therapies are taken into consideration. Mastectomy procedures, such as skin-sparing and nipple-sparing mastectomies offer reasonable cosmetic outcomes. Also keep in mind that hormone therapies do not have life-long benefits, and the longer the hormone therapy exposure, the more likely the side effects. I compensate by exercising aggressively, which can greatly reduce recurrences, with a healthy diet, with low alcohol intake, and with low body weight. Good luck to all of you, these are difficult choices. I too prefer quality of life over length of life.

May 6, 2013 at 4:04 am
(56) Leanne says:

I have been on Tamoxifen for 18 months and I have just came off it on my own. I now have Osteoarthritis in my hips and have gained 11 Kgs. I am 42 years old and walk around like an 80 year old. I made the decision I would rather live my life as it is and feel like myself again than go through another 3.5 years feeling like crap ! There are a lot of people out their with an opinion but when you have been through Chemo and Radiation It should be my decision. It has been 3 weeks and already I have lost 3 Kgs and feel so much healthier, no hot flushes, walking normally and feeling like ME

May 8, 2013 at 7:27 am
(57) AussieHarmony says:

So glad to read all these posts. Looks like we all found it while searching for survival data for women who quit their AIs or tamoxifen. I gave up taking Arimidex four months ago for all the reasons listed above plus it gave me male patterned baldness. I took it for 7 months.I worry about my decision but figure that what is the point of spending the next 5 years feeling like I already had one foot in the coffin. Fair dinkum. There has to be a better way.

I found a list of foods that have natural aromatase inhibitors and a website that lists foods that are anti angiogenic with Dr William Li.

Also keeping blooding levels of vitamin D really high can prevent cancer risk by up to 77%. On average 8000 iu needs to be taken every day. You can get this just on sun alone if you get a lot of strong exposure. Doctors never recommend a big enough dose to be theraputic which is so strange considering the research. Resveratrol and curcumin (with pepper) work synergistically so they are more effective together than alone. Limonoids in lemons (in the skin I think) also enhance the effectiveness of curcumin.

I’d rather take more time to eat unprocessed organic clean foods with supplements, no alcohol, no dairy and red meat than take Arimidex and feel like I am 100.

May 9, 2013 at 11:21 am
(58) denise says:

Thanks to everyone for sharing your stories – like so many of you, i tossed the tamoxifen in favor of preserving my quality of life. Please know, i was dx with idc, brca neg, mastectomy, stage 1, no lymph node – i have the luxury of bypassing Tamoxifen because the recurrence rate is only 20%. I want to say if it were higher, i’d do the same. I did not want my children to be around me while taking Tamoxifen. I was an awful, short-tempered, bed-ridden mom. That is not acceptable – the potential damage to
them haunted me. Quality of life means

May 10, 2013 at 2:16 am
(59) Loida says:

I am 60, I was diagnosed stage2a in may 2012, gone mastectomy, no lymph nodes involved, menauposal since 1952, took Arimidex for 3 months but was shifted to Aromasin when i experience pains on my joints and higher cholesterol level. The Aromasin had side effects too as i can’t sleep well. so i stopped coz i don’t want to miss work. I have no medication since and just maintained my plant-based diet, exercise, veggies, fruits and juicing. I also fast once a week and get enough sunlight and drink ionized water. Plus a lot of prayers and service to the christian community of women i have been a member since 1994. So far, i feel very strong though i know from my readings that the cancer can recur, which they say, i have a 5 yr survival rate. Whatever it is, i just placed myself in God’s hands and make every day just as fruitful as I can have it. I will see my onco this June. He knows that I have stopped my AI.

May 18, 2013 at 11:14 am
(60) Fay says:

I am 69 and two weeks ago diagnosed with stage 1 breast cancer to my left breast. I am due to have an op 0n 12th June. As yet I don’t know what will be prescribed but I’m been reading all your comments about hormones, tamoxifen etc. I’ve been through the menopause (long process for me, am careful what I eat and walk regularly) and really don’t want all those menopause symptoms again.
Now that I’ve read these comments I shall be asking my surgeon or doctor if its really necessary to take anything considering my age.

May 22, 2013 at 8:49 pm
(61) Kathy says:

I had stage 2 bc with sentinel lymph node involvement. Double mast, chemo and rads. Then on to Arimidex for almost a year. This past month was so bad. Depression, pain in whole body. Felt like I was 100. No interest in doing much. I work three days a week but that was a struggle too. Anxiety when I woke every morning.
I quit Arimidex four days ago. I feel so good. Energy back. No pain. Brain clear. No depression or anxiety.
I am 71. I don’t need to ruin what is left of my life with this pill. When I asked my onc at the outset if I did nothing but surgery, based on the growth rate of the cancer, when would it come back. He said in my eighties. Given the tiny percentage of advantage that taking this drug would give me – 2 years longer life assuming the worst – I choose to live my life NOW.

May 25, 2013 at 11:47 am
(62) Cee says:

I was diagnosed with BR stage 1 and grade 2 eight years ago. Had lumpectomy and 8 weeks of rads. Decided not to go on tamoxifen for 5 years and was in remission for 8 years. Went for a routine mammogram end of last year and a new tumor was discovered in the other breast. Also stage 1 but this time grade 3 cancer. Had the same type of surgery and rads treatment and was prescribed letrozole for 5 years this time as I am in menopause. Again I have the same strong aversion to taking the drug and still need to tell my oncologist of my decision. In the meantime the drugs are delivered every month and are piling up.
I agree with you that quality of life is the more important and the possible side effects are just not worth it. My mother had BR at age 49 and had a mastectomy and lived a very healthy life for 16 years. She had a fall and injured her shoulder and it didn’t get better. After a couple of weeks she went to see the doctor and after an x-ray told her to pack her bag for hospital. She was diagnosed with stage 4 cancer breast cancer that had spread to all her major organs. My dear mom was gone within 6 weeks and it was extremely difficult to deal with. A couple of years later and I was diagnosed with the second primary breast cancer and am missing my mum’s amazing support this time. But I am a survivor like all of you wonderful ladies and know a positive attitude is vital when you fight this terrifying disease. Love and light

June 12, 2013 at 12:46 pm
(63) Mary F says:

Hello ladies! So wonderful to ready everybody’s story. My breast cancer was caught very early and no chemo was neede. It was estrogen receptor positive, but i am braca negative and i think my onco # was low. Had double mastectomy and reconstruction. Stopped my HRT in January and have had enough adapting to that, and i am sure it’s not over yet. I am at the stage where dr. wants me to take AI. I have been stalling. Now I know why. It is not worth the risk. I will work on my diet and exercise some more as well as numerous natural blockers that i have also been researching…and pray for the best. All comments here have made me feel so much better and have helped me make my decision. THANK YOU ALL … Big hugs to all of us.

June 17, 2013 at 4:03 pm
(64) Tracey says:

I went through 7 months chemo, 15 days radio, 2 lumpectomies in the same breast. I was age 39. I have been on tamoxifen for 18 months, no sex drive, hot flushes, itchiness in private parts, sweating, no periods, my bones kill, am tired All the time, I have worked throughout though and had a nap on returning home from work on top of looking after my children age 12 and 14. I do get fed up, fed up of the 2 stone weight gain everything is a struggle but hopefully a worthy struggle. I am guna carry on taking them and plodding on as I am frightened not to, I was stage 2c. I want to see my grandchildren and I am hoping that I will. They are horrible tablets and make me feel awful but it’s got to be worth it. My friend stopped taking hers and it came back so that’s the reason I carry on. Come on ladies lets have a moan but let’s keep focused and realise we are taking them for a reason. 3.5 years to go and counting but I will succeed, I have to. Thanks for listening. Xx

June 18, 2013 at 11:09 am
(65) cathryn says:

I am dealing with my second breast cancer. The first was Ductal, the second stage 3 lobular, estrogen positive. I stopped tamoxifin the first time because of the pain. The cancer agency says if I had taken the tomoxifin I would not have got the lobular cancer.
So, I have now had a mastectomy, chemo 6 months and radiation x 30.
All because I stopped the tamoxifin.
I am now on AI, which are making me feel like 80 years old.
I have great difficulty walking because of joint and bone pain.
So, I will take it for 5 years as my survival will go from 50% to 85%.

June 21, 2013 at 12:21 pm
(66) helen says:

I know it is a hard decision to decide to take AI but my SE that bother me the most is the sexual side effects. I am going t try to stay on for the 5 years. It has been 3.5 years. What ever you decide research diet and supplements like taking an aspirin, selenium, reservatrol, co q 10, melatonin nightly, increased vitamin D, fish oil. daily. These were all low with breast cancer and may help to prevent reoccurance. Also stay away from added hormones to our meat, dairy etc. Also the long acting vaginal cream like Replens which does not have hormones is helpful.
Best of luck to you all. Its great to have support on this web sight.

June 21, 2013 at 7:29 pm
(67) deb says:

The more I read, I believe they overtreat my cancer,dcis. I refused radiation and took tamoxifen forr only 1 week. I’m a letter carrier and work out in the heat. It made me sick

June 26, 2013 at 11:32 pm
(68) Connie says:

Yes thank you ladies for all your input. I, too, have been struggling with the decision on possibly the AI which the doctor prescribed vs tamoxifen. She did not want me to take tamoxifen due to past heart (which are gone now but afraid they may re-surface due to hormonal drug) issues. Now there is a problem with the AI since the doctor saw my bone density – osteopenia. So now on hold for the AI. I am 65 very early stage I – had lumpectomy 6 mm and IORT in April 2013. I may have to take osteo med but how do you do that with the side effects already mentioned with the AI or Tamoxifen. Hence my research and concern as I do not really want to take the osteo meds either as heard too many problems with that too.
In my research for all issues, I am leaning toward diet, exercise and alternative modalities such as essential oils, supplements including “indole-3-carbinol” which I just heard about. And careful monitoring. Right now I feel fabulous not taking any meds – I am doing the alternatives including making Green Drinks on my Vitamix (3 a day) plus the supplements. Do have an appointment with a specialist in Endocrinology in 2 weeks for the osteopenia question and will reconsult with my oncologist about my decision. Thank you all for you input. I has helped solidify my decision.

June 30, 2013 at 1:46 pm
(69) Vicki says:

You have all confirmed I made the right decision. I had Stage 1 ILC with 11 nodes removed, all clean, a little over 5 years ago. I had a left mastectomy followed by chemo and was on Tamoxifen for 5 long years. I was so excited to stop but my oncologist NOW wants me to take Arimidex for 5 MORE years. I took the Arimidex for a little over 2 months and have been miserable–I just decided to stop 2 days ago and can’t wait to feel like myself again. The side effects were even worse than Tamoxifen and my cholesterol (which has NEVER been over 200) went from 175 before I started to 230 in 10 weeks! I am so glad I found this post!

July 4, 2013 at 6:50 am
(70) Cee says:

Following on my earlier post I read a very interesting article on the link between insufficient oxygen for healthy cells and cancer cells thriving. Dr Otto Warburg won a Nobel Prize for his work in the early twentieth century. He stated: “The prime cause of cancer is the replacement of the respiration of oxygen (oxidation of sugar) in normal body cells by fermentation of sugar.” Basically what he was saying is that cancer cells thrive in an acidic environment and if the body’s ph balance is normal and there is enough oxygen in the blood it will be impossible for cancer to develop. Now I have a hiatus hernia too and have learned to live with the nasty effects for years – I actually suffered from very early on my youth but only found out 6 months ago that I have this condition. My daughter has been complaining for years about my breathing. I have now done research and discovered that hiatus hernia causes a person to breath with your chest and shoulders and not with your abdomen. This reduces the amount of oxygen you body absorbs providing an opportunity for a ph imbalance…. Interesting … wondering of all of this has a connection with the breast cancer I had eight years ago and then again the end of last year ? In my research I also learned that a hiatus hernia can be the cause of various chronic diseases. First thing I am going to do is have is go for surgery to correct the hiatus hernia. I will then see if my overall condition improves. I must admit somehow I had a bit of a AH HA moment with this information from Dr Warburg , then the past cancer and the ph in-balance in my body possibly caused by something that can be corrected fairly easily. I do not want to take any more drugs and subject my already energy deprived body to more chemical changes with possible devastating effects. Your input will be greatly appreciated.

July 4, 2013 at 2:50 pm
(71) Debra says:

I am so happy to see all the comments where we are fighting back with over treatment of Breast Cancer. I have worked in the pharmaceutical industry for over 30 years and I am very aware of the bad risks out weighing the good of many drugs prescribed today. They don’t know enough about these drugs causing more harm to the quality of life then good in early stage breast cancer. Doctors can easily say that you are increasing your risk of reoccurrence because they are in bed with the pharmaceutical companies. The last comment about oxygen is a very interesting theory, since it was believed that doing surgery on DCIS is over treatment. I am doing my own clinical trial on myself. It had been2 years since I was diagnosed with Stage 0 DCIS. refused lymph nodes removed, refused radiation, refused tamoxifen and AI – I am doing fine so far, as I am still able to work on my field to keep my insurance to get my check ups. There is no way I would be able to work in this competitive business if I was on treatment, especially since the previous company I worked for fired me when I told them my diagnosis and needed surgery. They gave me a nice 1 month severence package, since they fired me one week before my surgery and they paid for my health insurance for 1 year, but I had to sign a confidentiality agreement for them. So, I am due to go for my 6 month check up again with my new job with health insurance. Just keeping my fingers crossed since I don’t want to go through what my Mom went through. She passed away from breast cancer that got into her bones because she had positive lymph nodes in her lumpectomy because her Alzheimer’s caused her to ignore the lump in her breast. I choose Quality of Life over Quantity and that’s my choice!

July 4, 2013 at 6:46 pm
(72) Mary Harbison says:

I was diagnosed with stage 1 breast cancer in August 2010, did the lumpectomy and radiation. Was prescribed tamoxifin and have never been as sick in my life. So I just stopped taking it because I just did not want to be sick all of the time. Eighteen months later the cancer was back and this time I had a total mastectomy. I have been taking Aromasin since the surgery and tolerate it well. I have hot flashes and some joint pain but I can live with it, I may not live with another cancer diagnosis. I have a great doctor who has worked with me in finding a medication that will work for me and, unfortunately, if you have cancer you are a walking experiment because every day a new procedure or medication is discovered because of the treatments and results we as survivors provide.

July 22, 2013 at 7:19 pm
(73) JC says:

Thank you for the comments here. I was dx in April with Stage 1, Grade 1 IDC, plus after lumpectomy, LCIS and DCIS were discovered. Due to the LCIS and the increased risk of cross-recurrence, I elected to do a Bilateral mastectomy with same-day reconstruction. I am very happy I did it. I also got a score of zero on my Onctotype test. I am 56, post-meno and HER postive. I am taking Astrezol 1mg and I’ve been told side effects are not near what Tamoxifen causes. I am hoping that is true. So far, I’ve had one bout of bad stomache, but otherwise, just slightly queasy. I began exercising and eating better and hoping my chem panel shows it. Since I’m on BP meds (low dose, familial) not sure how the Asterzol will mix with it. But I’m very optimistic, thrilled to be alive and will take whatever I need to take to get my risk closest to 1-3 % that I’m told it currently is, on the drug with everything I’ve done. You ladies thinking of coming off the drugs, especially those with alot more years ahead of you: I hope you think hard. How will you feel if there is a recurrence? Will you regret coming off the inhibitors? I don’t know. I think I would. I’ll do my best to stay on them and so far, God’s given me a lot of positive results with this cancer bout of mine.God Bless.

August 3, 2013 at 11:36 pm
(74) Maryanne says:

I’m so happy I found this website and there are other women out there who feel the same as me. I was diagnosed with early stage breast cancer stage IA no lymph nodes. ER/PR positive Invasive lobular of right breast. There is no history of breast cancer in my family. I was on prempo for 5 years and it is believed that’s what caused my breast cancer. I had a lumpectomy in April. 4 weeks of radiation. Finished on July 3rd. No chemo. My recurrence score is 15. I am borderline osteoporosis and am very concerned about taking Arimidex. I just started taking this one week ago. So far the side effect that is the most bothersome is I feel dizzy all the time and very Lightheaded and have the shakes. Its such an awful Feeling. I feel very weak and am already starting to get joint pain in my knees. After one week!! I have always been an active person and In good shape. I work out at the gym and bike ride. I also deal with depression and have been on Wellbutrin for years. My husband has commented that in the last week I’ve become very short fused and agitated which I know I have. Libido is zero. I’m so dried out I’d be afraid to have sex. I’m 55 so I’m already menopausal. My thoughts are I will try this medication but am really against it and all the side effects. If it starts affecting my quality of life I’ll stop taking the meds. It’s my body.. My choice .. My life.

August 11, 2013 at 10:32 pm
(75) kesmarn says:

Femara was ordered for me after a huge surgery that involved partial mastectomy, TRAM-flap procedure and partial removal of the sternum and 4 ribs with reconstruction with an acrylic mesh. I discovered levels of pain I didn’t even know existed. The up side is that biopsies and scans since the surgery have all been negative. Doctors advised against chemo after all that and was I grateful about that. They did order Femara (aromatase inhibitor). As a nurse I’ve learned to start out slowly on meds and see how it goes. Took one 2.5 mgm dose and had hot flashes for a week. (I’m post-menopausal at age 65 — but had an “easy” menopause in my 50s with almost no hot flashes.) Took a second 2.5 mgm pill 2 1/2 weeks ago and am still having hot flashes. I’m beginning to wonder if this med should be dosed differently — as in no more than 2 pills a month. Clearly it’s kicking butt with whatever estrogen I have if I’m having all these hot flashes! And at $720 for 90 pills, wouldn’t it make more sense to cut the dosage? I realize that daily doses help the pharmaceutical company’s bottom line, but do they help the patient? At this rate I have a three year supply! That is — IF I opt to keep on taking them.

August 19, 2013 at 9:08 pm
(76) Jodi says:

I am a mother of four ( one of my four kids has severe disabilities and requires 24/7 care) I own a restaurant. Never smoked, never had alcohol
Always very healthy!
In the past two years I have had about 8 surgeries that were related to my breast cancer. Because of some of the surgeries it put off my treatments
It was almost 18 months later that my body could withstand the chemo.
The surgeries were major but I bounced back. My unka test ? Came back at 25% witch to my understanding is pretty high. I had both breasts removed, had a trans flap 5/6 other surgeries do to complications.
I worked every day through chemo, I was painting 3 days after my first surgery .
NOTHING compares to this medicine, I’ve been advised to take for the next 10 years plus!!!!!!! I’m only 43, my hips hurt so bad I can hardly walk.
The pain and fatigue is so so crazy! How is this living? Who out their REALLY wants to commit to 10 plus years of feeling, useless and dependable on their loved ones?

August 20, 2013 at 1:20 pm
(77) TAMMIE says:


August 20, 2013 at 1:21 pm
(78) TAMMIE says:


August 28, 2013 at 6:46 am
(79) lp says:

I read a recent medical article about the benefits of taking Tamoxifin for 10 years. I told my Oncologist I want to continue it for 10. I have side effects from it, but to me, the benefits far outweigh any side effects.

September 3, 2013 at 3:29 pm
(80) susan says:

lots to read here! wel, i’m soon 69, diag w/ earlyish bc 3 1/2 yrs ago. onco score of 4, so no chemo no radiation. wonderful! once onc doc talked about life style changes [ best weight, exercise, best fruits and veggies daily, no smoke, no drink] I was mesmerized by the info. and thought,’ I can do THAT!’. however, I was very culturally pushed to take tam or arim, and after much juggling of se’s , chose arimedex. I tolerate it well. however, who knows what it is causing that will yet appear? I battle my se’s daily w/ exercise, food, supplements my ldl is higher than it ought to be. my wght is very difficult to manage, my bg and bp threaten to be a doc issue if I go off my natural schamtural life style changes. they are all good, and I am sooo lucky to be retired and able to focus on my life, that I manage well. I do have a goofier brain, and go more slowly than I used to[ jts and msl are prone to aches and tightness]. however, I am feeling close to trying 1/2 pill, or stopping. my left fem neck is now osteoporotic, and I do not want to change to bone sparing tamoxifen. or take a bone drug. both can encourage familial problems I want to avoid. I believe that alternate foods and a commitment to exercise and stress management can be subst. for aromatase inhibitors. I do take DIM, and also ashwaghanda helps my mood and depression. and I am taking a few anti hi cortisol supplements as hi cortisol disturbs sleep, and disturbed sleep I do have. I do want a juicier vagina;-) and at almost 69 feel I ought to have more years of easier more enjoyable sex in my life. I am orgasmic cuz I work on it! but we don’t have spontaneity. I wonder things like: are orgasms anti cancer? would I have a stronger more energetic weight bearing walk w/ out arimedex? as well better sleep. meanwhile I hear so much about good sleep is anti cancer!

September 3, 2013 at 3:31 pm
(81) susan says:

2nd half of my comment;-)
and exercise is anti cancer, and I do have to go against the grain to get out there and walk. I also hear how much sugar feeds cancer, and docs never talk about that. I compromise a lot diet wise, but am looking again to clean up my diet. dark chocolate is the only sweet I need? and prunes help bones, and are so sweet. is that pro bone and pro cancer. how’s a girl to know?? I look to enjoy my days and hope to make a decision that supports that;-) thanks for all the supportive sharing.

September 3, 2013 at 11:58 pm
(82) ETTLE says:


September 4, 2013 at 12:08 am
(83) ETTLE says:


September 20, 2013 at 3:21 pm
(84) sdladywolf79 says:

I was stage 0 DCIS with sentinel lymph node involvement. I had two surgeries one to remove the lump, the second to establish clear margines. I was given 36 sessions of radiation and stayed on Tamoxifen for 4.5 years. Last year the oncologist asked if I wanted to stay on the medication, as it was only improving my chances for not getting BC by 1%. He told me i really didn’t have cancer, but all of the treatment was prevention. After 4.5 years of hot flashes, a complete hysterectomy, weight gain, and sleepless nights, I stopped. I just had my last visit with oncology today, and the doctor was upset that I stopped. Well, if I really didnt have cancer, and etc, then why was it a problem that I stopped in the first place. I agree with others when they say we are guinea pigs. What will happen in 10 years? Will the tamoxifen cause other problems, such as osteoporisis? I just fractured my foot last week, and the oncologist tried to dismiss the possibility that it was the treatment. I don’t believe it for a minute, as I had no warnings of a stress fracture. What happened, did the bone just break because? I am 52 years old and was simply taking a nice walk.

September 25, 2013 at 7:14 am
(85) Nicole says:

I just had a bilateral mastectomy with immediate reconstruction. Stage 1, no spread to nodes, ER+/PR+, HER2-. They told me I did not require any further treatment. However, there was “optional” treatment of chemo and/or tamoxifen. I have recently declined both. I do not feel that the risk is high enough to ruin my quality of life by taking the chemo and/or hormone therapy at this time. I am only 41 and have a child and a career. If the cancer were to come back, I will reassess treatment at that time, but for now, I need to LIVE. Surgery was July 23, 2013 and was a success.

October 1, 2013 at 9:15 am
(86) kathy says:

I agree with Joan. I was told that the drug that I’m taking is only 20% effective. I was border line with my breast cancer so i did everything chemo which killed and 32 rounds of radiation which landed me in the hospital twice. and now this. With joint pain, hot sweats, tired, weight gain. I’m 56 i already went thru this crap before I’m not going thru it again.

October 7, 2013 at 10:13 pm
(87) Carolyn says:

I am 71 years old. Just had a lumpectomy of left breast, 2 cm. in size, invasive ductal carcinoma, no lymph involvement and clear borders after surgery. My doctor wants me to go on an AI for 10 years (says it is now 10 years, not 5). After research and reading the comments on this site, I would have to be CRAZY!! I am a very active, healthy person aside from this cancer. Don’t even have high blood pressure. Bones are great. I don’t know how many years I have left, but I don’t want to spend them in constant pain or depressed. From what I can figure with onca score, etc. I have a 10% greater risk of recurrence if I don’t take the AI. I have a 70% chance on not recurring and a 30% of recurring. I am going for the greater odds and opting out of hormone therapy. Did the Mammosite concentrated, targeted radiation twice a day for 5 days and that is it for me. If 250,000 women a year are diagnosed with breast cancer and studies only include a few thousand, how can they come up with accurate recurrence statistics anyway?

October 30, 2013 at 1:44 am
(88) Kathy says:

Hi ladies, I had read all your comments and I am so glad you have all left them. I had stage 1 IDC & stage 2 DCIS, tumor was less than 2 cm, no node involvement, 2 lumpectomies to clear margins, and SNB. Then I was talked into a bilateral salpingo-oophorectomy because I had an ovarian cyst they were concerned about, turned out to be benign, but I was told this surgery would give me a better drug (an AI) than tamoxifen. I start radiation therapy next week. My menopause symptoms are overwhelming me so I was given Effexor, which gives me nausea, I was given Femara also at the same time, but after reading the side effects, I have not started it yet and I am truly afraid to. I am 55, my Oncotype score was 17, so I was not prescribed chemo. This drug scares the hell out of me and I don’t want to take it but my family is pushing me to do everything I can. Help!

November 2, 2013 at 11:48 am
(89) ChriT says:

I HAD Stage One, invasive, estrogen+ breast cancer 2 years ago.I was 47 when I was diagnosed, I underwent a double mastectomy and had my ovaries and 6 lymph nodes removed. 7 separate cancer cells were found. One sentinel node tested positive. My lymph nodes were clean. A CT scan and bone scan came out clean as have my first 2 yearly blood tests.

My doctor put me on Arimidex. She said it was more effective than radiation at preventing recurrence. I did not need chemo. From the data that I have been reading, alternative remedies and adding more fruits and vegetables to my diet are BETTER at preventing recurrence than the Arimidex is WITHOUT the side effects and that is why I am quitting the prescription drug after taking it for 19 months. I am tired of the chronic headaches and the muscle and joint pain. I take supplements and exercise regularly to minimize the side effects from the drug.

November 23, 2013 at 2:35 am
(90) Carolyn says:

I would like to know where all the money is going towards breast cancer.. where do you find the stats on the research?

Would it include the study and results of Tamoxifin and Aromasin and any other “preventive” drug after the fact? Or are we ALL just supporting the pharmaceuitcal companies?

What help me was meeting all other breast cancer survivors…. No charge to that.

|Carolyn Deme,
Montreal, Quebec….

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