Do you take Tamoxifen? Why/why not?

Hi Leslie  I am taking tamoxifen but my situation is slightly different from yours.  I was also DCIS Stage 0 and had mastectomy on Rt in Jan 07.  The pathology report came back ER+.  My doctor wants me on tamox to reduce risk to other side.  Being that you had a bilateral and it remained Stage 0 after the path report I wonder with an even smaller risk than me, why your oncologist wants you to take it.  I thought since tamox blocks estrogen from working on those cancer cells that react to estrogen, what other body parts can it help?  There are side effects including a risk of uterine cancer, so I think you might want to question him more about it.

Hope this helps

Michele

I was diagnosed in 2/04 with a small low grade tumor that was a mixture of both IDC and DCIS. The ONLY treatment I've had was a lumpectomy and SNB. I had just turned 49 when diagnosed and was already about 9 months into a natural menopause at that time. The first oncologist I saw was one who I had previously worked part-time for (I used to be an oncology nurse) and never really cared much for him even then, but was more or less railroaded into consulting with him by the breast care coordinator while I was still shell shocked from the diagnosis. He tried to get me to take tamoxifen and pooh-poohed my various concerns about potential side effects vs actual benefit, telling me that there really were no significant side effects...I fired him on the spot and had my records transfered to a different oncologist (one who happens to be my neighbor).  My neighbor oncologist agreed with me that tamoxifen wasn't a very good idea considering some pre-existing medical issues I already had, but suggested I give arimidex a try. I refused that as well, but was able to get him to admit (off the record) that although he agreed with my rationale that I would probably do fine without anything, he couldn't officially recommend that to me.   

My cancer was small and low grade and the surgeon (also now a neighbor), knowing that I was probably going to refuse radiation, made sure to remove the needle biopsy tract along with the lumpectomy specimen. Having the biopsy needle track removed significantly decreased the chance of THAT cancer recurring. With wide, clear margins, a small low grade tumor, negative SNB, very low Ki-67 (5%), no vascular invasion, excision of the biopsy track and good surgical lumpectomy technique, non-dense breast tissue (making mammogram ID of a new or recurrent tumor very easy), and already being in a natural menopause all add up to the odds of both systemic spread and local recurrence being very low and the probability of a complete surgical cure being very high.  Those odds were good enough for me because I'm not worried all that much

about THAT cancer should it return. Not having altered the cellular DNA with radiation and drug therapy, it's very likely that should it return, or a new cancer develop, it will again be another low grade cancer (and surely caught much earlier the next time)...and my choice of no treatment other than surgical excision will likely be repeated once again..

Leslie, my diagnosis was more 'severe' than yours, since I had multifocal high grade DCIS and a microinvasion.  I also only had a single mastectomy.  My surgeon and my oncologist both agreed that after the mastectomy, my recurrence risk is approx. 1% - 2%.  I've done tons of research on this and a 1% - 2% recurrence rate after a mastectomy for DCIS seems to be what most studies have shown.

For that amount of risk, my oncologist recommended against taking Tamoxifen.  He did say that I might want to consider taking Tamoxifen to protect my remaining breast, but he actually recommended against it, saying that he felt that for me, the risks would outweigh the benefits.  Again I did a lot of research, and I reached the same conclusion.  Tamoxifen is not without risks (as well as possible quality of life side effects) and I don't feel that the benefit that I'll get from Tamoxifen warrants exposing myself to those risks. 

Leslie, in your case, you've had a bilateral, so your risk of a contralateral (i.e. other breast) BC should be very low.  The one factor that goes against you is your age - the younger you are when diagnosed, the more likely it is that your cancer may be aggressive.  But you had low grade DCIS, which is non-invasive, and since virtually all your breast tissue has been removed (with your bilateral), I'm a bit surprised that your oncologist would put your risk to be as high as 10%.  There's always a little bit of breast tissue left after a mastectomy, so of course there always will be some risk, but 10% is on the high side. It must be your young age that is driving that.

If you really aren't sure that you want to take Tamoxifen, my best advice is to get a 2nd opinion from another oncologist.  See if another oncologist also puts your risk at 10%, and if he/she also recommends Tamoxifen. 

Dx at age 46, pre-meno, with intermediate grade DCIS. The original plan was partial mx (lumpectomy), then radiation and tamoxifen. After some hemming and hawing and a second opinion, I had rads. The onc I met with was 'on the fence' about tamox & said he hadn't prescribed it to his mother due to the potential SEs. After rads, the rad onc talked to one of his colleagues who said that tamox would probably be overkill for me.  I've been experiencing some uterine issues that are still to be resolved. Once those are taken care of, I'll revisit tamoxifen - probably with the gynocologist as there really isn't a med onc around to see.

I had DCIS in 2005 and my radiation oncologist suggested I take tamoxifen as did my surgeon.  I hate the side effects but at the same time I elect to take it because if I ever have a recurrence, I want to know that I did everything I could to prevent a recurrence so I do not have to live with "what if".......

Hi,

I was dx with DCIS in Oct 2007.  Biopsy showed extensive multi focal dcis grade 1 and 2. Rt Mast in November 2007. That pathology showed comedo necrosis and a mixture of intermediate and high grade.  Even with that diagnosis, my BS did not see any reason for me to see an oncologist, except that I requested the referral.  My concern was for my remaining "good" breast.  After meeting with the oncologist in January he said No to  tamox.  Mostly due to my age, 56, and no family history.  His opinion was that tamox was actually a better choice for pre-menopausal woman as they seem to handle the side affects better.  In my case, even though taking tamox would reduce my reoccurance rate in my good breast by half,  the rate was already pretty low and he didn't feel it was worth it to risk some of the bad side affects. There is a small risk of reoccurance in my left breast, but I am quite comfortable with my decision. But I made it after reviewing the statistics with a trusted professional.  Confusing, isn't it?  You might want to see another oncologist for a second opinion or an explanation of why tamox is your recomendation.  Phyllis

I don't. I think that there are better drugs, with better results and fewer side effects. I had to find another doctor to do this though. It is Femara. When the druggist filled my prescription, he said that it was the first he had filled and added that he thought it was a big improvement over other drugs.



I have had very few side effects and am really satisfied with the results.

My tumor was diagnosed in March 07.  Tried a lumpectomy but couldn't get clear margins.  They went back in three times but still couldn't get clear margins.  I had a bilateral mastectomy in July 07.  It was a very difficult decision for me as I was initially leaning towards just doing one side.  But I eventually decided I just couldn't got through this again and there was no guarantee that there wasn't cancer in the other side.  I do take Tamoxifen.  My understanding of the reasoning behind it is this:  I was 45 and premenopausal.  My tumor was ER+.  It was explained to me that  breast cancer and ovarian cancer sometimes go hand in hand.  (Which sucks because I had a hysterectomy a year prior but because of my age they left the ovaries.)  The Tamoxifen blocks the production of estrogen and since my tumor was ER+ it significantly lowers the risk of getting ovarian cancer.  Reference to the side effects, I know everyone is different but I understand a lot of women don't have any side effects from it.  When I first started on the Tamoxifen, I got hot flashes for a couple weeks. They then disappeared and I haven't had any other side effects at all.  I know this is a personal decision for everyone, but for me, I need to know that I am doing everything I can to prevent a recurrence.  Especially since I (Thank you Lord)  didn't have to go through chemo.  Hope this helps.

Pam, you just made the very important point that I was thinking of as I was reading the recent posts - for women who have DCIS, the only option is Tamoxifen.  None of the other drugs such as Femara or Armidex are approved for DCIS women; they are prescribed only to women who were diagnosed with invasive cancer.  And for anyone who is pre-menopausal, whether with DCIS or invasive cancer, Tamoxifen is the only option.  Femara and the others are only for women who are post-menopausal.

southernchick, did you have DCIS or did you have invasive cancer (Stage 1 or higher)?  That might make a difference in whether Tamoxifen would be prescribed after a bilateral mastectomy.  For those with invasive cancer, Tamoxifen provides a dual benefit - it reduces the risk of both local recurrence (in the small amount of remaining breast tissue) and distant recurrence (outside of the breast, i.e. mets).  For someone who has DCIS, there is technically no risk of distant recurrence so there is less need for and less benefit from Tamoxifen after a bilateral mastectomy.   So if you had a bilateral but had invasive cancer, that would make your situation different than Leslie, who had low grade DCIS.

Leslie, where are you now on your thoughts about this?  Have you considered a 2nd opinion?

Leslie,

It's good that you decided to press your oncologist about this.  And it's great that now you don't have to worry about getting a 2nd opinion - your doctor did that for you, getting the 2nd and 3rd opinions himself.  It's interesting that your doctor has changed his recommendation now that he's heard what the others have to say. 

Even using the 5% - 10% recurrence risk numbers that your oncologist gave you, which do seem to be on the high side (but that could be because of your age), the benefit that you would get from Tamoxifen would be quite small.   So weighing the risks & benefits, it is a logical decision to say that you won't take Tamoxifen.   With that decision, do you have a follow-up plan with your oncologist?   Women who take Tamoxifen often continue to see their oncologist for 5 years, and get regular checks of their breast area.  For those of us who aren't on any treatments, we often stop seeing the oncologist, and the surgeon, after a year or two.  So it's important that you work out a follow-up screening schedule with your doctor, with manual checks of your breast area at minimum, and possibly, MRIs (although not necessarily annually).  Sometimes it's the oncologist who does these checks, sometimes it's the surgeon, or your oncologist may send you to back your gynecologist or even your PCP.  Just be sure that you have an agreed-to schedule and plan for regular screening.  The risk of recurrence may be small, but it still needs to be watched for.       

Yaa I want to do it.

I was offered it too...but I wasnt pressured at all either way.  I had similar numbers and risk.  I had a SMX.  My Onc acknowleged the side effects and said the mild ones are temporary (hot flashes etc) and the major ones are forever even if you stop taking it (blood clots, cancer).  She said its possible to reduce my risk just the same by diet and exercise.  she also said if I had IDC, we would have a different conversation. 

I voted diet, exercise and careful monitoring over the pills.  a 3% risk deduction wasnt worth the risks of side effects.  MHO

Amazing - I live in Pittsburgh and every single oncologist, radiologist, surgeon, regular doctor, gynecologist that I have seen have all said TAKE THE TAMOXIFEN.  I was resistant at first but I've caved in and I am taking it. 

Interesting how some people got a hard sell. I'm glad that mine did not. Rad.onc. told me straight up that she was 60-40 to take tamoxifen vs. not and the only reason why she wasn't 50-50 was because of the possible modest benefit to reduce chances on my good side. The benefits on the lumpectomy/rad side were something like a 3% benefit and I'd rather avoid playing around with my hormones.

A recent study came out that stated that there was no recognizable benefits to taking tamox. in women who'd had lump + rads. But there was a difference when comparing rads v. no rads -- so I continue to be glad that I chose to go through with the rads . . . and at least for now do not plan to add tamox.

Sorry for the late response. I was on Tamoxifen for 17 month until  I got a superficial clot on  a chest vein. The doctor said that probably it was a side effect of the Tamoxifen and he recomend to stop the medicine because that  time it was superficial clot but I could get a very dangerous one. In my case the benefits of the medicine are not worth it.