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5 Years of Tamoxifen Good, 10 Years Better?

By December 8, 2012

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I can tell you right now, that if the study on Tamoxifen that just came out in the Lancet is correct, sales of antidepressants to breast cancer survivors will soar. Tamoxifen is a well-studied drug that helps reduce the risk of recurrence for estrogen-receptor positive breast cancer. The standard of care has long been a daily dose for 5 years following primary cancer treatment. Both male and female breast cancer patients have taken Tamoxifen to lower the odds of cancer's return by 50% and many patients are willing to put up with the side effects to get those odds. But many of those patients also take an antidepressant to help moderate the hot flashes, low libido, vaginal dryness and osteoporosis that the estrogen suppressor can cause. Even with a little Effexor to help ease the blues and the other side effects, many women quit taking Tamoxifen before their 5 years are up - citing frustration, ongoing discomfort, and problems with sexual function, to name a few.

So when the study came out showing that 10 years of Tamoxifen is even more effective than the standard 5 years, I felt like taking an extra dose of "happy pills" myself. Full disclosure: I took the drug for 2 years and then begged my oncologist to let me switch to Aromasin, which had milder side effects. I am not a full-fledged Tamoxi-Babe, I caved.

The study everybody's talking about involved more than six thousand women with early stage estrogen-sensitive breast cancer. Women all over the world who had already taken Tamoxifen for 5 years were divided into two groups - half of them stopped the drug, while the other half continued for another 5 years. Results showed a 3.7% reduction in breast cancer recurrence when the drug was taken for 10 years. This benefit came with a slight rise in risk for endometrial cancer - one possible side effect of Tamoxifen.

AstraZeneca makes Nolvadex - one brand name for Tamoxifen, and they provided some of the funding for this study. Naturally they would not mind providing twice as much of this drug for us as they do now. Nor would the makers of many fine antidepressants protest if they were asked to produce double the amount of pills for breast cancer patients and their long-suffering spouses and supporters. But perhaps that is beside the point.

I'll admit that I haven't read the entire study, so I don't know if the research addresses the issue of whether or not the patients were tested for Tamoxifen resistance. This drug helps many, but it does not benefit each and every patient. It is most effective for pre-menopausal women, but it also interferes with fertility. For some young female patients who want to get on with family planning, the prospect of 5 or 10 years of an antiestrogen drug is unappealing, to say the least. Some women may start on Tamoxifen while they are still fertile, but due to the effects of chemotherapy, hormone therapy, and age, find themselves in early menopause. These women change to aromatase inhibitors (as I did) and would not need to continue with Tamoxifen in that case.

So please don't lay in a lifetime supply of Tamoxifen if you have breast cancer - chances are that you will wind up using a different drug over time, or a new study will come out reporting somewhat different results. What we really need - and want - is effective prevention! Until that comes, we'll work with the wonder drugs that we have for now.

Source: Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of oestrogen receptor-positive breast cancer: ATLAS, a randomised trial. Published online December 5, 2012 in the Lancet. First author: Christina Davies, MBChB, University of Oxford, United Kingdom.

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Comments
December 8, 2012 at 8:56 am
(1) Becky says:

Why so negative? I am happy to see any advancements in breast cancer prevention or treatment. As with any medication, risks and benefits need to be discussed with the treating physician. If the research is legitimate with a large enough population tested and correct statistics applied to determine the results, then I believe that this breakthrough should be welcomed, not scorned.
B-

December 11, 2012 at 8:49 am
(2) Amie Searles says:

I understand the negative tone of the article. The treatment for breast cancer is borderline barbaric. Chop off your body parts, pump you full of toxic chemicals that even the nurses have to wear a hazmat suit, take away your ability to have children. Then after all that, take this disgusting medication that makes you fat, depressed, and makes you feel like you’re a 90 year old woman trapped in a young body due to bone pain…I get it! And then add on another 5 years of tamoxifen? Yes, I’m bitter. Find a cure already!

December 12, 2012 at 9:41 am
(3) laura-doula says:

Becky, Just curious: have you ever been on tamoxifen for more than six months? If your answer is yes, I applaud you (or are you just super lucky, and have not needed to cope with the side effects many of the rest of us find so troubling?)

Laura

December 12, 2012 at 9:50 am
(4) Marjorie says:

All the details about this trial did not make the press.
60 percent of the women in the initial trial dropped out. Then, 40 percent of those who who were in the 10 year randomized arm of the trial dropped out.

The only group that showed benefit in the 10 year arm were younger, premenopausal women. 12 percent of that group had recurrences after the 10 year mark compared with 15 percent in the 5 year group.

For those who can tolerate this treatment that is good news but those drop out rates speak volumes to the side
effects. Quality of life for some women is depleted to the point that they will accept whatever risk might exist.

December 12, 2012 at 10:46 am
(5) Holly says:

I take Remifemin day n night and the hot flashes are mild to almost none. The sexuality clinic at yale prescribed it knowing my history. It is black cohosh made in Germany which is different than US made blk cohosh. Research it!

December 12, 2012 at 11:02 am
(6) Pat says:

If the research is legitimate…..so many ways of bending things in favor of the drug companies… that is all breast cancer research is about…. how to sell more drugs…. what about prevention…. estrogen dominance can be cured in the kitchen … why does no one talk about that? How about eating cruciferous vegetables….what about DIM or indol 3 carbinol… eat some broccoli, bok choy, brussel sprouts

December 12, 2012 at 3:45 pm
(7) Mariam says:

Too bad- I’m a breast cancer survivor 3 1/2 years into 5 years of taking tamoxifen and was going to throw a party when I didn’t have to take it anymore.

December 12, 2012 at 4:44 pm
(8) Fanni says:

I had a lumpectomy 3 years ago. It was in suitu. I have been on Tamoxifen for 3 years. The only side effects were leg cramps which have decreased over the years. My bone density test show no changes nor do I have osteoporosis from that pill. I guess I have been lucky. If my oncologist wanted me to stay on the pill for that additional 10 years, I certainly would.

Each morning when I take that pill, I say thanks that there is something to help save my life. My mother was not so lucky.

December 13, 2012 at 6:49 am
(9) Alicia says:

When I heard these study results, my first thought was, “No way am I putting up with this for an additional 5 years!” I starting taking Tamoxifen 1 year ago as well as an antidepressant to counter the side effects. Well, if the side effects have been lessened, I don’t see how anyone could handle the drug without an antidepressant! Hot flashes galore, some weight gain, & my bone density has dropped 6% (which might be due to last year’s inactivity as I went through treatment). I’m post menopausal & went through my hot flashes 10 years ago. To think that I might have for them for an additional10 years because of Tamoxifen sets me to wailing. Could I at least be in the Guiness Book of World Records for enduring the blasted flashes for 20 years?

December 13, 2012 at 10:39 am
(10) Charlotte Wolter says:

Your article certainly captures the discomfort and dilemma of Tamoxifen. The stuff sucks: thinning hair, nails that don’t grow and creaky joints. As for sex, fuggedaboutit. But, it does work. Because my cancer seems particularly opportunistic, I’ll take it the 10 years, if I have to. It seems to be working so far.
By the way, I keep depression at bay by getting angry. I blame my doctors and the medical profession in general for my degenerated state. That may sound strange, but finding someone to blame always seems to help. My doctor’s reaction is bemusement, which probably is the right attitude, since there’s nothing he can do about Tamoxifen.
Meanwhile, let’s keep agitating for more targeted treatments, drugs that attack these cancers specifically. The recent article in Nature about the DNA sequencing of early-stage breast cancers opens many possibilities for identifying these tumors precisely at a genetic level, and, maybe, developing treatments that don’t involve muting all the estrogen in your body.
Let’s hope.

December 14, 2012 at 7:16 pm
(11) Kay OC says:

I did great on tamoxifen, didn’t have any of the side effects and felt fine. I had problems after my hysterectomy and got switched to a post-menopausal treatment. One made me dizzy, to the point that I fell and chipped my kneecap. Another gave me muscle aches. I finally got switched to anastazole. No bad side effects so far, but I do think it may be hindering my weight loss efforts. I haven’t heard any study results about post-menopausal treatments over five years. Have you heard of any Pam?

December 15, 2012 at 9:53 am
(12) Becky Stockum says:

I am a 7 1/2 yr. survivor at this point. I don’t remember what the differences are in Tamoxifen & Arimidex/anastrazole—-which is what I have been taking for about 7 yrs.—–know it is an estrogen inhibitor. I had some joint pain at first with it, but after going through open heart surgery previously, then mastectomy/chemo w/an extra year of Herceptin/radiation, it certainly wasn’t the worst thing I’d ever gone through. My DEXA bone scans are good every 2 years, I’ve never had any depression, had gone through menopause in my early 40′s. I am a Type 2 diabetic, I had Grave’s disease & had radioactive iodine treatment & take medicine every day for that, I have had high BP since I was in my 20′s, cholesterol high—-BUT I turn 65 next month and I am SOOOO very happy to wake up each morning & be able to say when I go to bed that this has been another GOOD day. My husband’s aunt, who recently turned 100, took Tamoxifen for 25+ years—we had them stop it a few years ago. Her grandson’s wife, in her forties, recently had a stroke which was attributed to the Tamoxifen that she had been taking for a few months. In my case, I feel that attitude has had a LOT to do with me getting through all that I have dealt with!!!!

January 2, 2013 at 1:16 pm
(13) Liset says:

I was diagnosed with invasive and in situ breast cancer stage 2 in August, 2012. I recently finished my chemo treatment and I will undergo surgery next week for bilateral mastectomy. My oncologist said I have to take tamoxifen for 10 years and my surgeon agrees to it. It is very discouraging to read the negative comments and very encouraging to read the positive comments. I’m very confused and worried about this drug and possible side effects. I think I won’t take it and try with a very healthy life style and with alternative treatment. But then I’m afraid not to take the tamoxifen and have a recurrence. I am 36 years old, I don’t want to get fat, and I don’t want to take antidepressants but I want to live and see my son grow, go to college, get married and give me grandchildren. Life can be really tough.

January 6, 2013 at 4:03 pm
(14) Doug Heim says:

fantastic publish, very informative. I ponder why the other experts of this sector don’t understand this. You should continue your writing. I am sure, you’ve a great readers’ base already!

January 7, 2013 at 5:15 pm
(15) Marlene says:

I HAVE TO SAY THAT TAMOXIFEN HELPED ME FOR THE 5 YEARS I TOOK IT, THEN I TOOK ANOTHER DRUG CALLED EXESMESTANE FOR A CLINICAL TRIAL FOR 5 YEARS. I HAVE LIVED CANCER FREE UNTIL JUST RECENTLY WITH A RECURRENCE OF THE BREAST CANCER. I THINK ANY DRUGS THEY CAN GIVE US OR TESTING IS VALUABLE TO OUR SURVIVAL BE IT A MONTH OR YEARS. I AM CURRENTLY JUST STARTING ARIMIDEX AND HOPING IT WILL PUT THIS AWFUL DISEASE BACK INTO REMISSION. WE ARE NEVER REALLY CURED, WE ARE PUT INTO REMISSION, AND I HAVE LEARNED NEVER TO PUT MY GUARD DOWN WITH THIS DISEASE. ANYTHING THAT IS NEW OR PROMISING I AM WILL TO TRY……..I AM FORTUNATE TO LIVE IN A TIME WHERE SO MANY ADVANCEMENTS ARE BEING MADE IN TRYING TO GET RID OF CANCER, YES THIS AWFUL DISEASE.

January 22, 2013 at 1:52 am
(16) Christine says:

@ Liset (comment #13) I am 34 years old and was diagnosed with IDC early December. I had a bi-lateral mastectomy with reconstruction on 1/2/13. I felt like that was the easy part. I was up and moving around the next morning( but dont move around too much as it will prolong the drains being left in f.y.i.) The pathology came back as ER+, PR-, HER2-. I had a total of 6 tumors all in my right breast, 4 were .4cm or smaller and the two larger tumors were close together so they are counting it as one large tumor,3.2cm (individually 1.6 & 1.8… I thought that added up to 3.4?) sending me into the grade 2 category. The pathologist said it is still considered early stage BC but staged it as 2A because of the largest tumor. She also was very excited that the Suggested tamoxifin dosage just increased to 10 years… I am not! She also suggests doing chemo but I insisted on an oncotype test (likelihood the cancer will return) before deciding. I plan on talking to my gyno regarding removal of my ovaries but think I will still have to take some sort of hormonal drug for the rest of my life. I too am looking to stop the madness and commit myself to the healthiest cancer fighting diet but I have two young children that I feel I owe them to do whatever necessary. Supposedly I am cancer free at the moment? I bought Suzanne Somers book, Knockout. I really liked it but I feel truly tortured over the decision to do chemo, lose all of my hair and nails, destroy my healthy cells and scare the crap out of my kids… They are 3 and 7) and take tamoxifin for 10 years while I go thru hot flashes, more mood swings, risk of stroke, pulmonary embolism, uterine cancer, blood clots. My husband must want to run…. WTF are we going to do? I am going to get a 2nd oncology opinion and then go to a holistic doctor as well. I have never written on a blog before but if you would like to contact me, please do. Christine snc120493@aol.com

January 24, 2013 at 2:03 am
(17) Jan says:

@Liset (#13) & @ Christine (#16) I can totally relate to you ladies. Sept 2005 at the age of 32 I was diagnosted w/ Stage 3C breast cancer. It was grade 2, ER+, PR+, Her2-. 10/11 node +, I didn’t have a family history and after genetic testing found out that I do NOT carry the gene. At the time I had a 2 year old and 7 year old. I was married 9 yrs and my poor husband was scared out of his mind as was I. Too top it off we had no family around due to a relocation for my husband’s job. I had 2 lumpectomies, chemo, radiation and 5 years of tamoxifen. The hot flashes were the biggest thing on the Tamoxifen for me. It was by far way easier than the chemo. They got better over time. I was off medicine for a 1.5 years and then reluctantlly started Lupon shots to put me into menopause 6 months ago to make me an postmenopausal canditate for the Arimidex which I started 6 weeks ago ( supposedly the Arimidex can lower my recurrence from 40-26% between yr 5-10 after 5 yrs on the Arimidex ). Now that’s a decision I wish I would have not taken due to too many side effects ( If some how I can go back on Tamoxifen I would do it in a heart beat if I must) I was told there were no other options after 5 yrs on Tamoxifen. I say this to say that everyone is different. With tamoxifen lowering risk by 50% I would definitely consider. Side effects or normally well tolerated. I have been cancer free for the last 7 years. Praise God! You can contact me at Janthejeweler@yahoo.com Good Luck and stay positive

February 21, 2013 at 2:36 pm
(18) jenjo says:

I can also relate. I was diagnosed with stage 2 at age 38 with a 4 and 8 year old. I had a lumpectomy with 2 re-excisions to get clear margins. They found one node positive. I had chemo then radiation and I am in my 4th year of Tamoxifen. My body has now adjusted to it but it took over a year for my body to adjust to the lack of estrogen. The ant- depressants with the least side effects are the ones that you can’t take with Tamoxifen!
So I skipped the anti depressants – I don’t like drugs anyway. I have also noticed that different generic versions of Tamoxifen give me different side effects. I have no hot flashes with Meyler but Noveldex is horrible for me – I felt terrible all the time. I finally talked to the pharmacy and they special oder the Meyler version because it is so much better for me. My oncologist has heard this before but said had no explanation for it. I know that is is working as I have all of the symptoms of menopausal women – not fun when your 42!

February 21, 2013 at 9:46 pm
(19) Nicki Scheidegger says:

I’m 38 and was diagnosed on 12/12/12 ( lucky number?) of BC.
I had a lumpectomy on 1/14/13 with clear nodes and margins. Stage 1 and due to Onco type test of 17– NO CHEMO.! ER + HER2-
I went today for radiation and CT scan for my molding… My MO wanted me to start tamoxifen last week but my brother in law was killed in a car accident so I didn’t start it.
Today, my radiation oncologist told me that he always recommends his patients to wait until they are finished with radiation before starting tamoxifen.
I’m active, a runner and I don’t want to take this drug… I know I need to, but I don’t want to. I have 3 kids, 13, 11 and 9.
Any thoughts or suggestions on to taking this drug with radiation or after? Thanks so much for input. Stay strong ladies!

February 26, 2013 at 4:28 am
(20) KateMc says:

My oncologist just called me today to let me know she thinks I should extend tamoxifen to 7 years. I am 3 months off my 5 year mark, and was looking forward to it so much. I am at a loss to know what to do. The side effects are rubbish, i’ve put on so much weight, thinning hair, facial hair, fatigue and vaginal dryness. I am 35, and don’t have any children. So i’d have to wait another two years!! Not that I’m in a relationship due to having low self esteem from the weight gain, one breast, and having depression. Trade off I guess is a slightly higher survival rate. Humph, I don’t know.

April 8, 2013 at 11:56 am
(21) Angela says:

I am on year three of Tamoxifen. I did not have cancer. A biopsy revealed that I have Atypical Lobular Hyperplasia which puts me at high risk.

I am exhausted. I am sore. I have hot flashes, anxiety and depression. I just gave myself a three-week break but I am now back on it.

I feel like I owe it to my husband and children to continue taking Tamoxifen for as long as my doctor tells me to.

May 2, 2013 at 8:48 pm
(22) charissa broderick says:

Great post! We will be linking to this great article on our website.
Keep up the great writing.

May 24, 2013 at 10:00 am
(23) nancy says:

I am soon to be 60, took HRT for 10 years, early menapause….I found a small lump, Stage 1 no nodes….had a lumpectomy Oct 2011….tried Arimidex for approx 6 months..wanted to commit suicide…couldn’t walk (also have early Parkinson’s, glaucoma, and osteoporosis)….eyesight is effected among lots of other things…neuropathy in my feet was crippling, had to be drivien back and forth to work…..need my job for health insurance……begged Onc to change so on Famara I went for some months…..already have the widow’s hump due to osteo, stopped for 3 weeks so far and hurt just as much….if I can have a bilateral mastectomy and decimate my risk of recurrance, I will do what I can short of doing it myself….that is how desperate I am….I feel for you ladies

May 30, 2013 at 5:10 pm
(24) traci says:

been on it for 10 months. yes I have all those symptoms, most upsetting is my hair. Very thin, feels odd losts its va voom (but no bald patches) but im not going to moan.

IM ALIVE……….. I AM ALIVE

Traci aged 41 small invasive, node neg, lumpectomy and rads.

June 3, 2013 at 4:52 pm
(25) Darlene says:

I was on Tamoxifen for the full 5 years – after a lumpectomy and radiation – had oncotype testing – results were on the low side stating NO chemo would help — still my Dr. wanted me to do chemo… made my decision and told her NO – Also, wanted chest x-rays for 5 years – I told her 2 – not putting extra radiation in my body…. PEOPLE STAND UP for yourself… I made a decision to eat healthy and change my life style. I did take the tamoxifen for 5 years – was off for a year – weaned myself off because she told me to just stop…. but after reading posts weaning made more sense. She actually asked me today to start taking it again – now she is a very well like oncologist and has been voted very high by her piers … Sorry folks I’m not doing it.I asked her the benefits – she said chance of re-occurance goes from 27% to 25% — Sorry I’m sure the side effects and long term effects are not worth the 2% change…. I did not have side effects like some of you poor ladies – but I will not pay for their new equipment with further testing or will I take further drugs – Even talking with the nurses they feel it is just to keep us coming back…. Positive thoughts – and prayers – I’ll keep eating healthy – drink only purified water – take my vitamins and wing it.

June 9, 2013 at 2:22 am
(26) Nobody says:

Darlene, if you had to do the 5 years again, would you? Or would you have made a different decision?

June 9, 2013 at 2:24 am
(27) Nobody says:

Darlene? If you had to do the 5 years over again, would you do it? Or would you have made a different decision?

June 18, 2013 at 2:12 am
(28) Shirley says:

You have to do what you and your spouse think is best! No doctor can guess where your body will be in a year let alone five. Study, pray, make a decision and DON’t look back! Tamoxifen has wrecked my mind and emotions as well as my body. I would not do it again……
Good luck! God bless!

June 25, 2013 at 3:12 pm
(29) Barb says:

Hello everyone, some of the stories on here about Tamoxifen are awful. I have IDC Stage 1 so early stages and about to start Radiotherapy, however, I am so reluctant to take the Tamoxifen and run the risk of the other life threatening diseases it can cause. I have read that it’s of little benefit to pre menopausal women. I am 45 and I have a 4 year old daugher (single parent) so it’s important that I do what I can to keep this disease away as long as possible but am not convinced that Tamoxifen is the way forward. Any advise would be very much appreciated.

Thanks.

July 23, 2013 at 9:18 pm
(30) Leslie says:

All of your comments have been so comforting to me! I have been taking the tamoxifen for 3 months and want to stop very badly. The bloating & wt gain and depression…………I’m just not sure if I can do this the 5 years. It is definitely an individual decision. I had lumpectomy/radiation, am 46 yrs. old and live a very active lifestyle. I think I will look into foods that may lower estrogen in the body.

August 25, 2013 at 7:24 pm
(31) cheryl says:

I have been on tamoxifen for 3 years, and my hot flashes are horrific! My hair falls out a lot, you can actually see where new hair is growing, my body doesnt know if its hit or cold. I have a lot of bad days, but I need this medicine, so I will continue to use it.

September 26, 2013 at 8:44 pm
(32) Sana says:

Hi everyone, i’m 27 years old from Kuwait i was diagnosed of breast cancer 10/09/2012 two weeks after my marriage! It was tough! I was planning for my wedding and honeymoon! Last thing i was expecting was a CANCER! I had a lumpectomy after 6 months of chemotherapy, and followed by radiotherapy. My oncologist advised me to take 5 years of tamoxifen! I refused and told him i wanna get pregnant ! Then he agreed on giving me both zoladex and tamoxifen for two years! Double medication! It’s hell i can’t take it anymore the side-effects are doubled ! I decided now to take 5 years of tamoxifen after my cousin cancer reccurence in the BONES! She had breast cancer 10 years ago and now it’s back in her bones! She quite tamoxifen and got pregnant twice! She didn’t follow the doctor advice and stopped taking tamoxifen! I’m so scared now and if it’s better to take it for 10 years i will! Please ladies don’t predicate that u dnt need tamoxifen! follow ur oncologist advice!

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