Help - to take Tamoxifen or not???

MoniqueE

I am new to this site (it is great) and would LOVE input/suggestions with respect to my recently diagnosed DCIS!!!!!

My husband and I are leaving for Africa for 3 years and I need to make some decisions FAST.  I had microcalcifications that were biopsied 10/1010 coming up with a positve result + DCIS, grade 2.  Lumpectomy was 10/28/2010 with the pathology report coming up with clean margins, 100% estrogen positive and 80% progesterone positive.  I started radiation 4 days ago (25 treatments in all) but am now REALLY struggling with whether or not to start taking Tamoxifen.  I am only 40 and am struggling with the prospect of the multitude of various side effects.  Add to this I just don't really understand my risks.  Yes, I have researched but DCIS just doesn't seem to have clear cut answers. 

 The oncologist basically said that, since the site was 100% estrogen positive, tamoxifen is necessary.  Is this true??  Anyone in my shoes??

 THANKS IN ADVANCE!!

DiDel

MoniqueE My tumors were 95% ER+ and 80% PR+  and I didn't think twice about taking it. My onc was pleased to tell me I would do very well on Tamoxifen. I was concerned about possible side effects and my onc spent about an hour with me going over the clinical study and explained how rare most of the terrible side effects are. I have been on it now for almost three months and nothing. Once in a blue moon I will have a little nausea but that's been it. The benefit most definitely outweighs the negative side effects. I say it's an amazing drug that has been proven and on the market for 30 years. I feel lucky to benefit from this drug. It is a pain to take a pill every day but now that I have also added many vitamins and supplements to my morning regimine it's just one more pill to add. I am guessing at the end of my 5 years I may want to continue. There is a thread Bottle O' Tamoxifen where many people discuss any side effects or their daily ritual for taking their T.

Good luck in your decision and in Africa!

Diane  

Beesie

I worry that your oncologist is saying that Tamoxifen is necessary.  After a lumpectomy, I understand why Tamoxifen is being recommended.  I also understand that with the fact that your DCIS is 100% ER positive, you would get the greatest possible benefit from Tamoxifen (vs. someone who is not so strongly ER positive).  Those are two important facts that favor taking Tamoxifen but that's very different than saying that Tamoxifen is necessary.  It's not necessary.  It's a choice.  And it's your choice.

If you take Tamoxifen, you will get two benefits.  The first is a reduction in your risk of local (in the breast) recurrence.  Tamoxifen can reduce your risk by approx. 45%.  The big question however is "what is your risk of recurrence?".  What is your age?  How large was your tumor? Was it in a single focus or was it multi-focal?  How large were the surgical margins?  A clear margin is anything more than 2mm in size; an ideal margin (one that significantly reduces recurrence risk) is at least 10mm in size.

If you had a small single focus of grade 2 DCIS with no necrosis, and if you had very good margins (ideally 10mm), then your risk of recurrence might already be quite low.  If it's 8% (as an example), then taking Tamoxifen for 5 years can reduce your risk to 4.5%.  That might be enough to warrant taking Tamoxifen, or you might look at the 8% risk and feel that that's okay.  On the other hand, if you had multifocal DCIS, if you had any necrosis (which is possible even with grade 2 DCIS), and if your margins were small, then your risk of recurrence might be quite high.  If it's 20% (as an example), then taking Tamoxifen for 5 years can reduce your risk to 11%.  That's a pretty significant benefit from Tamoxifen, although again here it's an individual assessment on whether it's worth it or not.

The second benefit you get from Tamoxifen is protection of your breasts (both breasts) against the development of a new primary breast cancer.  Here the benefit is again approx. a 45% reduction in risk, but the benefit from taking Tamoxifen for 5 years will only last for maybe about 15 years.  So depending on your age, this 15 year benefit might cover most of your remaining lifetime risk (if you are 70, for example) or it might not cover much of your remaining lifetime risk (if you are 45, for example).  What you need to do is find out from your oncologist what your lifetime risk is to get BC again - generally once we've been diagnosed one time, our risk to be diagnosed again is about double the average for someone our age.  Remember that this risk is calculated to the age of 90.  Once you know your lifetime risk, you can figure out your annual risk (a rough calculation is to divide your lifetime risk by the number of years till you turn 90) and then you can determine the benefit of Tamoxifen (a 45% reduction of your risk for approx. the next 15 years).  At the time of my diagnosis when I was 49, my lifetime risk to be diagnosed again was 22%; I calculated that 5 years of Tamoxifen would reduce my risk down to approx. 18%.  I decided that this amount of benefit was not worth the risk of serious side effects and quality of life issues.  But others would jump at the chance to get this amount of benefit, so it really is a personal decision.

For those who have invasive cancer, there is a third benefit to Tamoxifen, which is a reduction in the risk of distant recurrence, i.e. mets.  That to me is the most significant benefit of all, but because those with DCIS don't face a risk of mets, it's not a benefit that's relevant to you or others with DCIS.  This is important to keep in mind as different people respond - the benefit we each get depends on our diagnosis and no two situations are alike.

I hope that helps!

rcca

Why not try the tamoxifen? If you have serious side effects or QOL issues you can always stop. Just my two cents.

CTMOM1234

I'm also in my 40s, pre-menopausal, had lumpectomy for grade 2 dcis, had full 6 weeks of rads, and next step was to consider taking tamoxifen. Met with onc. who thankfully didn't give me the hard sell -- told me she was neutral (well, think she said 60-40 to take v. not take, close to 50-50) . . . then she gave me my personal statistics and it would reduce my chances from something like a 4% chance to a 2% chance in my treated breast and there was also some very small annual reduction in the potential for bc in my other unaffected breast. And she did acknowledge the potential dangers of taking tamoxifen, which others on here have termed "chemotherapy in a pill." Not meaning to scare you, everyone's got to make their own personal decisions, based on both their own statistics and also their own risk acceptance levels.

 Am truly appreciative that she respected me enough to just give me the facts and then respected my decision to, at least for now, not begin taking 1700+ pills over the next 5 years. Some find comfort in taking that daily pill. For me, I sleep well at night with my decision and don't wonder everytime I have an ache or hormonal surge or anything, don't worry about endometrial and/or uterine problems, hot flashes, chemical menopause, changes to my drive -- but, again, that's my personal level or risk based on my personal circumstances. And no regrets, whatever decisions we make are made with the best information we have at that time.  Good luck.

AlohaGirl

Was the oncologist you spoke to a medical oncologist?  Or radiation oncologist?  If the former, I agree with Beesie that I'm concerned that he or she would say that tamoxifen was necessary (rather than saying she would recommend it but giving you a choice).  If it was a radiation oncologist, I would definitely suggest you try to meet with a medical oncologist.  I found my meeting with the medical oncologist to discuss tamoxifen extremely helpful. 

 She was able to discuss risk reduction (because I was 40 when diagnosed, so young in breast cancer terms, like you), she was more inclined to encourage me to try the tamoxifen but she would have been OK either way.  She also was able to discuss the likelihood of side effects in my individual case (for example, she thought given that I had been on the pill for many, many years with no issues, the risk of clotting was minimal in my case).  On the other hand, she thought because of some emotional side effects I had from the pill early on she thought I might have some issues of that kind. 

I decided to try tamoxifen on the theory that if I had too many problems I could quit and because for me personally should I have to face breast cancer again in the future I would feel better knowing I had done everything to prevent it.  (I am a very risk averse person.) 

I have been on tamoxifen for over a year now with very few side effects.  I did have a couple days of extreme anxiety about a week in, but I've been fine then (maybe slightly more anxious than normal, but hard to tell if that is tamoxifen or life).  Also, my libido is definitely lower than it was when I wasn't on the pill but similar to what it was when I was on the pill.  (Who knew that my sex drive was artificially low all these years!  Argh!)  (Hope that wasn't too personal, just trying to provide complete information.)

The medical oncologist who is following me (a different once since I had my treatments in California but live in rural Hawaii) has me do bloodwork to confirm that my liver function is OK every 3 months or so.  The first time it was a little high but has been OK since then.  Depending where you are in Africa it might be hard to find a doctor there to follow you (if you are in a very rural area for example), so that is something to think about. 

Anyway, I hope this helps.  Good luck with your decision-making!

3monstmama

I think Beesie, as always, has done an excellent job of summarizing what to think about.  I will only add that I was scared of tamoxifen [scared to death of the zaps too] but that like the zaps, Tamoxifen has really turned out to be a big hullaballoo about nothing much.  So far, I haven't had any SEs that I have noticed.  If it keeps me from signing back on this board with mets in 5 years, it will be well worth it.

If it were me, i would try it and see what happens.  As my onc said, try it and see.  If the SEs are really bad, then stop.  If you have no SEs keep on.

And have fun in Africa!  I'm jealous! I always wanted to live in Africa.

JennyB100104

What a great response Beesie gave. It is up to you--your choice. My stepmom had DCIS and she chose not to go down the Tamoxifen path--just a lumpectomy and rads. This was over 10 years ago and she has been fine.

I made a different choice & started Tamoxifen a week after I turned 40 (last month). So far so good--no side effects.

Good luck w/ your decision.

Anonymous

monique---I took tamoxifen for 5 years with very minimal SEs. I would just recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries, if you do decide to go on it.

Anne

CrunchyPoodleMama

You've gotten great replies about how to do your personal risk vs. benefit analysis, but I'll tell you why I chose NOT to take Tamoxifen, even though I'm "high risk" (huge total area of DCIS, including a 4.5cm palpable tumor, etc. and my DCIS is over 90% ER+).

For me, I didn't care about the short-term side effects so much as the long-term risks (similar to what CTMOM said). Hormones are such a complex system, and I personally don't believe it's wise to attempt to shut off all estrogen unless there is a very, very good reason (e.g., invasive cancer would be a better reason than DCIS, IMO). Instead, I'm taking the approach of using diet and lifestyle to bring my estrogen naturally into balance. (When I've tried to conceive a baby in the past and found that I had excessive estrogen, drugs didn't fix the problem... but diet and lifestyle did.)

For me, the other factor was that my husband and I want to try to have a baby... so obviously Tamoxifen fits nowhere in that plan.  Anyway, just one more way that it's a very personal decision based on your own situation, risk factors, and risk tolerance (either way).

MoniqueE

Thanks to all who gave me WONDERFUL insight!!!!!  I am meeting with my medical oncologist again this week to assess my risk!!!!! I have been ready multiple articles/reports/findings/studies on DCIS and I am more confused than ever!

 

joprivate

Wow Bessie, I was blessed to see someone who thinks somewhat like me! You give such specific details on data but could you help me with some of what you said?  You said ...

" For those who have invasive cancer, there is a third benefit to Tamoxifen, which is a reduction in the risk of distant recurrence, i.e. mets.  That to me is the most significant benefit of all,..."

Do you mean distant recurrence somewhere else in the body other than the breasts (which is what I thought you meant)?

Can you refer me to any data supporting that? I have been researching Tamoxifen online extensively and can find no such proven benefit. Which is why I'm lthinking there is no benefit that I've seen for a case to take Tamoxifen. Where did you find such data? I had uterine cancer, complete hysterectomy w/some lymph nodes removed (clear) but had lymphovascular invasion. So my Gyn Onco had me undergo 25 pelvic radiation treatments and now wants me on Tamoxifen and Megace combination therapy for an as yet to be determined time. No clear answers to technical questions, so I'm glad I found this web site and your post I never had breast cancer.

Beesie

joprivate,

Yes, by "distant recurrence" I am referring to the development of breast cancer somewhere else in the body, i.e. the development of distant metasteses.

These days it's hard to find the pure data on Tamoxifen's reduction of the risk of mets because the more recent studies are the ones that show that the AIs, or a combination of Tamoxifen followed by an AI, actually perform better than Tamoxifen alone.  So most of the research that comes up when I search on this topic shows a comparison between Tamoxifen and the AIs but doesn't reference the results for a placebo group.  I believe that these studies did not include a placebo group because it was already established from the earlier Tamoxifen studies that Tamoxifen does provide a significant benefit in terms of survival and therefore to not give the patients either Tamoxifen or the AI would have constituted medical malpractice.

For this reason, most of the data that I can find that talks specifically to Tamoxifen's benefit is older. 

The other thing that adds to confusion is that some studies talk about reductions in distant recurrence but show no difference in mortality.  Since distant recurrence will eventually lead to mortality, these studies obviously were just not run for enough years to measure this eventual difference in mortality. Other studies don't talk specifically about distant recurrence but measure differences in mortality.  Since it is only distant recurrence that leads to mortality - no one dies from a contained local recurrence - obviously a difference in mortality implies a difference in the distant recurrence rate, even though this data isn't provided.

Given all that, here's some of what I can find:

The Early Breast Cancer Trialists' Collaborative Group (EBCTCG) conducted worldwide overviews of systemic adjuvant therapy for early breast cancer in 1985, 1990, and again in 1995. In 1998, 10-year outcome data were reported for 36,689 women in 55 randomized trials of adjuvant NOLVADEX using doses of 20-40 mg/day for 1-5+ years....

Among women with ER positive or unknown breast cancer and positive nodes who received about 5 years of treatment, overall survival at 10 years was 61.4% for NOLVADEX vs. 50.5% for control. The recurrence-free rate at 10 years was 59.7% for NOLVADEX vs. 44.5% for control. Among women with ER positive or unknown breast cancer and negative nodes who received about 5 years of treatment, overall survival at 10 years was 78.9% for NOLVADEX vs. 73.3% for control. The recurrence-free rate at 10 years was 79.2% for NOLVADEX versus 64.3% for control. 

http://www.rxlist.com/nolvadex-drug.htm#ad Click on Clinical Pharmacology on the left side and then scroll about 1/4 of the way down the page. 

.

Q. What was the initial objective of this study 15 years ago, and has this changed? A. The main aim in 1983-85, when these worldwide "meta-analyses" (or overviews) first began, was to see if tamoxifen affected survival at all. Most people thought it didn't. Now that we know it does, we are studying the effects of prolonged tamoxifen (around 5 years) on long-term survival (more than 10 years), and finding excellent results in a wide range of women who had breast cancer.

Q. In terms of 10-year survival, what is the balance of risks and benefits (from Tamoxifen)?

A. An additional 3 women per thousand die from endometrial cancer or pulmonary embolus. In women with hormone-sensitive cancer 5 years of tamoxifen prevents about 30 times as many deaths as it causes. In women with untested breast cancers, it prevents about 20 times as many. (Even in women with no hormone receptors on their breast cancer, it causes fewer new cancers than it prevents, but these increases and decreases involve relatively small risks and benefits).  

http://www.ctsu.ox.ac.uk/pressreleases/1998-05-16/fact-sheet The first question/answer I provided is near the top of the page; the second is about 1/3 the way down.  If you then scroll about 2/3 of the way down the page, you'll find some interesting graphs.

Hope this helps!

agada

CrunchyPoodleMama,

what kinds of diet changes did you make and what types of exercises do you do?

Agada