Saying No to Tamoxifen

MariannaLaFrance

Saying No to Tamoxifen

MariannaLaFrance

Just curious... how many of you did not opt to take Tamoxifen? I just met with my oncologist today, and I let her know that I thought the risks for liver and uterine cancer were too high for my comfort level. I have absolutely made up my mind to not take the meds, but wondering just how many women make this kind of decision, and how you came to make such a decision. Any thoughts are welcome.

CrunchyPoodleMama

I said no (and explained to my doctor why). After he heard me explain that in the past, diet/lifestyle corrected my estrogen dominance whereas drugs didn't, he said "Okay, I'm fine with that" -- even though I'm over 90% ER+. Very thankful to have a doctor who didn't try to cram Tamoxifen down my throat!

TNgolfer

I am post-menopausal and my final treatment recommendation was 5 years of Arimidex.  I struggled with the decision.  Found it even harder to decide than when I had to choose between a uni or bilateral Mastectomy.  Everyone has to do their own research and make a decision that they are comfortable with.  Make sure that your sources of information are accurate.  Make sure you can live with whatever happens after you make your decision.  I have researched alternative therapies and after the bilateral mastectomy, my decision was to take the arimidex for as long as I can.  If the side effects are not manageable, then I will make another decision.  In the meantime, my diet will consist of foods that contain natural aromatase inhibitors.  We all have to weigh the benefits of any treatment against the risks.  Make sure you are comparing apples to apples--make sure you are not refusing a beneficial treatment in lieu of an extremely minimal risk.  You can also try some conventional treatment and diligently watch for signs of the risks.

janey47

I declined Tamoxifen, however, I'm in a very low risk group for recurrence because I had tubular carcinoma (an unusual form of invasive ductal carcinoma), and my medical oncologist agreed that it was a rational decision.

I told her that I would consider any compelling argument she had for it, although I was inclined to reject the treatment, and she said, well, she didn't have a *compelling* reason, it's just that most women are eager to reduce their risk of recurrence or metastasis as much as possible.  At that point, I asked her to compare *my* risk of recurrence/mets without the drug with the risk of uterine cancer were I to take the drug and she more or less admitted they were about equal and I said I was very comfortable with my risk level.  And that was that.  :-)

Anonymous

A number of women here have rejected Tamoxifen. You can do a search and see how they arrived at the decision.

Yazmin

I certainly turned down Tamoxifen and explained extensively my decision on these Boards. I am 4 years out.

irish47

Great to find this thread. I am about to start my radiotherapy and this tamox debate is going on in my mind.. I dont want to take it and have talked about this with my onc. Don't have to make my decision yet but the research I have done is telling me NO.  I know my cancer is in the low risk category and maybe I am lucky to be in a position to debate this.

CTMOM1234

I'm also probably going to opt out. Met with an oncologist just before starting radiation treatments, and she gave me a prescription and left the taking it up to me but only after rads. done. Said she was "60-40" in favor of my taking it, mostly because I'm in my 40s and she felt that I had a lot more years hopefully ahead of me (and also a lot of years unfortunately for future cancers). I like the idea of entering peri- and then menopause naturally and without worries that every little bodily change might be because of the drugs. Take 0 drugs and once the rads. are over, am looking forward to returning to natural healthy lifestyle.

dee1961

Bump

MariannaLaFrance

CTMom,

Right there with you on natural, healthy lifestyle. I don't take any prescription drugs either, and don't want to start on a regimen now. The argument for many years left in our lives is a strong one, and a very compelling one, but I am frankly terrified of the side effects and the potentials for more cancers in my liver and uterus.  I have a Stage 0 cancer, and feel extraordinarily lucky to have been diagnosed early, with a low grade, slow growth cancer.  That doesn't mean that I don't worry about a recurrance happening. I saw a story online recently about a woman with DCIS who had a systemic occurance 8 years later..... scared me witless.

SW7

I am getting a second opinion  with another oncologist next week.

I have 7 more days of RADS left and then I was supposed to see the oncologist to start Arimidex(sp?). She said for at least 3 years and then watch the last 2 whatever that means. My Rad Onc looked at my path report and said I had more tubular carcinoma than DCIS and the only reason I was getting RADS was for the DCIS otherwise the surgery would have been it. He discussed with me the higher risk of recurrence if I chose not to do the hormone therapy and  it was like  3%.

His final words were - it is a burden to go through for 5 years , new risks and no guarantee of 0% re occurrence. An anticancer diet , exercise, and  the right attitude is what I'm choosing but I still want to hear from another oncologist.

toughtitties

Hi ladies, 

I have my tamoxifen prescription in hand and am going back and forth on taking it. I too am concerned about side effects especially the potential for uterine cancer. I am so torn. I am told I can take it for just 2-3 years - because I am only 33 and would like to have another baby down the road. I had an oncotype dx score of 3 so I feel blessed I don't need chemo. I eat right and exercise but I was doing that before cancer too... I have stepped it up though with green juicing everyday and plenty of supplements. Is anyone taking I3C or DIM? According to Life Extension both can offset side effects while helping improve results of tamoxifen.  

Such a tough call.  

irish47

• Function of oestrogen..
• Guess tamoxifen works on the breast receptors but also on the functions listed below..
• a short history of the function of oestrogren but from wikopedia, maybe I am a brainless female!
• Structural
  • promote formation of female secondary sex characteristics
  • decelerate height growth^[11]
  • accelerate metabolism (burn fat)
  • reduce muscle mass
  • stimulate endometrial growth
  • increase uterine growth
  • increase vaginal lubrication
  • thicken the vaginal wall
  • maintenance of vessel and skin
  • reduce bone resorption, increase bone formation
  • morphic change (endomorphic -> mesomorphic -> ectomorphic)
• protein synthesis
  • increase hepatic production of binding proteins
• coagulation
  • increase circulating level of factors 2, 7, 9, 10, plasminogen
  • decrease antithrombin III
  • increase platelet adhesiveness
• Lipid
  • increase HDL, triglyceride
  • decrease LDL, fat deposition
• Fluid balance
  • salt (sodium) and water retention^{[citation needed]}
• Hormones
  • increase cortisol, SHBG
• Gastrointestinal tract
  • reduce bowel motility
  • increase cholesterol in bile
• Melanin
  • increase pheomelanin, reduce eumelanin
• Cancer
  • support hormone-sensitive breast cancers (see section below)
• Lung function
  • promotes lung function by supporting alveoli (in rodents but probably in humans).^[12]

Sexual desire is dependent on androgen levels rather than estrogen levels.^[13]

Member_of_the_Club

I have  one more month on tamoxifen - one more month of my five years.  I look and feel great.  This is a tough call if you are stage 0, but keep in mind that most women do just fine.

irish47

And that is fabulous for you, am so glad you are almost there. I dont mean to criticise you, I mean that I am not a stage 0 but am a stage 1, grade 1, clear nodes, no micro invasion so I am very lucky and therefore can choose to not take tamoxafin. 

MarieKelly

I answered this same question posted by someone else on another thread. Since I'm feeling lazy this morning, I'm just going to copy and past that response here -

I was diagnosed 6 years ago in 2/2004 a week after my 49th B-day with a 1 cm, grade 1 tumor consisting of both DCIS (40%) and IDC (60%).  My Ki-67 was only 5%, so it was a very slow growing non-aggressive tumor. I was 9 months into a natural menopause at the time of diagnosis. The only treatment I've had is a wide margin lumpectomy with biopsy track removal and a single node SNB - refused tamoxifen, arimidex and post lumpectomy radiation.  I haven't seen an oncologist since shortly after my diagnosis.

Primary reason for refusing tamoxifen; 

Because of a mitral valve problem, I have had 2 episodes of brief, temporary (maximum 15 minutes) visual loss in one eye - presumably due to tiny encrustations on the valve breaking off, traveling through the bloodstream and lodging in a retinal artery. Because of this problem, I have been taking a full strength (325 mg) aspirin tablet daily to prevent clotting and reduce the chance that episodes of visual loss will reoccur (they haven't in over 6 years on aspirin).    Taking a drug like tamoxifen with it's potential for blood clotting issues seemed intuitively counterindicated, although the first oncologist I consulted wasn't the least bit concerned about blood clotting issues in light of my history.  The second oncologist however, fully agreed with me. 

MariannaLaFrance

Marie

What did your doctor say about recurrance, and did you have to do Chemo?

I have decided not to take Tamoxifen, but am now a bit worried about recurrance rates for DCIS, though I've been told what I have is low grade. I need to stop reading about recurring rates, etc, as I will be mentally unstable if I don't stop!

MarieKelly

Marianna,

I only saw the original oncologist twice and then I fired him - once after the biopsy results and before the surgery and then once again after the lumpectomy and SNB.   I honestly don't recall ever having a discussion about recurrence risk with either him or the oncologist I saw twice after him - possibly because I don't think I even asked.  Once I knew it was grade 1 and that the margins were clear and very wide, I knew the risk of recurrence was relatively low.  My surgeon removed the biopsy track during the lumpectomy, so that was an additional factor in reducing recurrence risk.

I think the only thing that the first oncologist said that was even remotely related to recurrence risk was "this cancer isn't going to kill you".  The 2nd oncologist never mentioned recurrence risk either, but after refusing his offer of arimidex he said "off the record" (he's a neighbor) that he agreed with me that I'd likely be fine with doing nothing further.

No I didn't have to have chemo - it wasn't offered.  6 years ago, this first oncologist was still operating under the simplistic plan of care that anything over 1 cm got chemo and since mine was just under 1 cm, no chemo. He did tell me that if it had been a little larger, then chemo would be a consideration. I would have refused it however, even if it had been. Chemo doesn't do much, if anything, for well differentiated tumors.

Marianna, small, grade 1 tumors have the lowest risk of recurrence as compared to other grades of equal size especially if they've been removed with wide, clear margins (1 cm or more preferably).  Additionally, small, grade 1 tumors are much less likely to become distantly metastatic.  In having only grade 1 DCIS, it's highly likely that you're completely done with that particular cancer. You need to realize that when you hear and read such things as "40% recurrence without radiation and/or tamoxifen" those statistics are generated from studies that grouped patients with very different grades and sizes of tumor. Very few studies have been done on only small, grade 1 DCIS and/or IDC and those that were done have shown that recurrence can be as low as 6%. The primary reason that there are not that many studies exclusively on well-differentiated breast cancer is because the major concern is on controlling the aggressive cancers, so that's what they focus on and what the standards of care are designed to treat.

There are no 100% guarantees, but having DCIS that's small and grade 1 is about the best you can hope to get in a breast cancer diagnosis. Even if there's a recurrence of that original DCIS, and even it had become invasive when discovered, having a recurrence of a grade 1 BC, be it DCIS or IDC,  is not a catastrophic disaster in carrying the same magnitude of concern that it would be if it was an aggressive cancer. There are some who believe that grade 1, well differentiated breast cancer is a completely different disease than the higher grades - it's THAT  prognostically different.

My DCIS had already become invasive at diagnosis (I skipped my mammograms for 7-8 years). The tumor was 60% invasive and only 40% DCIS, and I did nothing except have it surgically removed,  yet here I am 6 years later alive and well.  I wouldn't have had that option of doing absolutely nothing else if it had been higher grade, or larger, or Her2. It's a completely different prognosis when it's small and well differentiated.

Don"t make yourself crazy worrying about recurrence rates. The odds that there will be no recurrence are highly in your favor and the odds that there will be no distant metastatic disease from that DCIS are even better and that's really all you need to focus on. Just remember that even if it did happen, a low grade recurrence is not a major disaster as compared to an aggressive cancer. 

iHEARTu

WOW Irish, that is a great list.

I've been on the fense too. I'm almost 4 months from my bilat and have been thinking about getting a second opinion. I'm 41 so I"m really just not sure. I met with a gyno about Omph - Ovary removal. That meeting was not helpful...the Dr was monotone and drab...too clinical for me.

catheirne

iHEARTu

OH, I was grade 3 and a very large area of DCIS and had a BMX...what are your thoughts on that as far as the Tamox?

irish47

Marie,

Your words are very reassuring; This question of taking or not taking tamox is the one that has caused me most sleepless nights.  Having read lots of books and done extensive research I have decided definitely not to take it.  I know when I next see my medical onc he will not be impressed but I feel suitably informed that this is the righr decision for me. Am having radiation therapy though, first one today.

irish47

iHEARTu,

saw your posts after i submitted mine.  Big difference in grade 3 as opposed to grade 1 but I wouldn't have read a huge amount about DCIS.  I think you are right to get a second opinion though because after a double mastectomy I would have thought your chances of recurrence extremely low.

rgiuff

I have been on tamoxifen for about 16 months, but have told myself I'll only do 2 or 3 years, and definitely will stop at any sign of impending uterine issues.  With my small grade 1 tumor, I don't feel that it's worth losing uterus and/or ovaries over.  I also feel good about other things I'm doing to cut the risk, like getting my Vitamin D levels up and exercising and eating a clean, well balanaced diet regularly as well as cutting out most of the alcohol, and learning to not stress over things like I used to, adding yoga etc..  I am getting tired of its effects on my sex life, mainly absolutely no libido left at all, I feel its antiestrogen effects are suppressing that part of my brain, so lately have been thinking about stopping it sooner.  Being perimenopausal, I want to try to enjoy whatever hormonal activity I still may have working for me before menopause really sets in.  Probably will go to at least 18 mos or 2 full years though, just to feel confident that I've gotten some benefit from it.  I recently had the tamox metabolization test done and it came back that I metabolize it well, so I feel glad that putting up with its effects has not been a waste.

Member, after your 5 years are up,  are you going to finish and go and enjoy life or are you doing anything further as far as hormonal therapy goes?

EleanorJ

I have turned it down as well, a year ago. I was only 5% ER+, it really helped my decision, had it been higher, might have been a tougher call, but then again, I wish I would have put my foot down and said no to radiation as well! Oncologist tried to push it a little, but he was ok with it. He couldn't push the neulasta shots on me, how would he have won that one I just spoke with a friend of mine who is a nurse, she was so thankful to find out I opted out of Tamox, she has a friend on it that has been dealing with so many SEs. Yes, lots of women do fine, but lots also have SEs. It's YOUR body, nobody can force to take hormones you don't want to take. Good luck with your decision.

MariannaLaFrance

My onncologist wasn't totally surprised when I told her I wouldn't take Tamoxifen. I am trying not to invite trouble and worry too much, but there are times.... when I wonder, namely after I do too much internet research.

I have had several friends from various parts of medical field tell me that they would consider the same choice I've made, namely because the drug has such heinous side effects and has additional cancer risks.

Thanks for your post, Marie. It was very enlightening, and I take a lot of strength from those words.

SW7

Thnaks so much for reinforcing my decision to be done with my BC treatments after RADS and go back to  a healthy lifestyle I  have neglected . I guess what really disappoints me about the medical professionals I have seen over my lifetime ( I'm 59) is that not one of them,  even the primary care ones,  actually look at all your med history and try to find a new approach instead of prescribing by the book all the time. I'm not clinical trial material so my choice is to either do what they say or see a naturopath.

. One oncologist actually gave me a month's sample of Femora to see how I would like it even though I kept asking what were my chances to have a recurrence if I did nothing more after the RADS.

His explanation was that by doing one more stage of treatment  I can't come back and say that he didn't try hard enough to prevent it. from coming back.  So for 5 years I pay with a chemical imbalance in my body not to mention the cost of the drugs - I'd rather spend the money on sweet potatoes and pineapple and all the other anticancer foods out there.

Like MarieKelly said - there are no 100% guarantees. I guess we have to make our choices and live with them - but live well!!

hymil

I'm about to start rads but going to opt out of tamoxifen. I took it for four months before my surgery (still had Mx) and it made my brain utterly foggy - the day i stopped taking it pre-op was like washing the windows.

I have heard a good exercise programme can be just as effective in preventing recurrence (and of course helps you lose weight, not put it on!) - does anyone know how much you need to do?

toughtitties

There is a fabulous doctor in Reno, Nevada that I went to see on Monday. He was written about in Suzanne Somer's book, Knockout. He is doing amazing work and seeing great results with his alternative treatments in stage 4 cancers. 

He generally doesn't see too many people like me... that is I sought him out. I figure some of his protocol could be preventative too. I am now taking something called orasal as a preventative measure... it is homeopathic with no side effects. It works on the sugar enzymes - so if there is any free loading cancer cells in my body - the cancer cells won't be able to feed off sugar as we know cancer is primarily a sugar metabolizer. 

I am also taking DIM and Indole-3 Carbinol and I will take the Tamoxifen for two years. I am supposed to start next week after I meet with my oncologist. Honestly, I know between diet, exercise, and my supplement regime I am doing a lot. However I guess in a nut shell I am scared not to take the Tamoxifen. My oncotype dx score is really low so I feel like taking the tamoxifen for a couple years will at least give me some benefit.... that is if there is any free loading cancer left.  

bichonlvr03

hymil - My daughter is a senior in college majoring in Kinesiology (Exercise Science) and she says for exercise to be breast cancer preventative, one needs to exercise 300 minutes per week. 

Nan56143

Dear toughtitties,

I would recommend that you read the book by Dr. John Lee..."What Your Doctor May Not Tell You About Breast Cancer". I think you will have more information on Tamoxifen, and perhaps you will not be scared in to taking it. I just bought 6 copies @ $5.00 each, on Amazon, and plan on giving them to 4 of my 5 daughters, and one friend who was dx with TNBC over a year ago. My daughter Lori was dx with TNBC in June of 2007, and said that had she read this book first, she would not have had the need to purchase anymore. (Other than Anticancer a New Way of Life by David Servan-Schreiber.)