Would like to forego Tamoxifen etc

dga1

Any experience foregoing the pills?
I''ve recently had the lumpectomy and about to do the radiation for 5+ weeks.
I am not convinced that the tamoxifen is needed at age 67.

Or maybe refuse radiation and take the tamoxifen?

MarieKelly

I was just barely 49 when diagnosed and refused everything except the lumpectomy and sentinel node biopsy - had NO radiation, no tamoxifen, no aromatase inhibitors. I was already in natural menopause at diagnosis so technically, I wasn't in the category they define as "young". That was 6 years ago and although one can never be absolutely certain, I seem to have remained cancer free ever since.

Not everyone will receive any real benefit from the standards of care such as anti-hormonal drugs, radiation etc - in fact, most don't. Even chemo isn't always delivering benefit to everyone it's given to.  That's how standard of care therapy is delivered - they give it to a certain population of patients even knowing that there are only a small percentage among that population that it will  actually benefit. The only standard of care that is highly successful is surgery to remove the tumor. All the rest have minimal to no benefit for the majority that recieve them.

The wisdom of refusing certain recommended treatments is highly dependent on a number of different factors -  the most important of which is the aggressiveness of the tumor. When someone has a small, low grade tumor that was removed with wide clear margins, the odds of that tumor resurfacing either locally or distantly, are already very low. Radiation and/or anti-hormonal therapy are not going to offer any real benefit if that kind of tumor was surgically cured - and most of them are.  When someone has a high grade, aggressive tumor, the risks are much higher, even for a tumor that's equally small in comparision.

Mouser

 If you go to "Adjuvant Online" -- http://www.adjuvantonline.com/index.jsp -- you can see what the statistical benefit to various hormones and chemo would be for your (broadly) diagnosis.

Your diagnosis is a lot like mine - i was 63 then, 67 now. Flatly refused tamoxifen because of the stroke risk at my age (both my aunt, on tamox, and mother, on HPRT, had clotting problems). I went off Femara in Oct 09 (after 2 yrs) because of SEs -- i could put up with the joint pains (1 shoulder, 1 wrist), but not with the mental fog i was in. Just saw my onc last week, and he says he has no problem with my staying off -- he agrees that with my diagnosis, i don't gain enough to lose QOL.  Amen!

Femara would decrease my *absolute* risk of recurrence from ca 17% to ca 9% - over as many yrs as they have data for... i twitch sometimes atthe increased risk i'm taking, but i'm not going back on.

About rads -- the roughly 30% recurrence risk seemed too high, tho i hated the need. So i did have rads --  then came the mastectomy, and now i keep reminding myself not to second-guess.... 

Good luck! Remember that it's your call - your life, your body, your decision. Doctors need to honor that!

ChocolateLover

hi, i'm only 40, but I refused Tamoxifen after my first surgery 10 yrs ago.  I am now stage IV and would tell you to do everything you can, EVERYTHING, to help prevent recurrences. I thought I was young and strong and didn't need it. It might not have made any difference at all to my mets recurring, but I would know that I did everything I could to fight this disease. I can't go back now. Do lots of research before you decide.

good luck with your decision. stay strong!

MarieKelly

ChoclateLover,

Were you originally diagnosed with 11/27 nodes positive or did that occur at some later date? Also wondering if your original diagosis was really only grade 1 and if so, did you have any second/third opinions on that pathology report?  The reason I'm asking is because you were just 29 at diagnosis and it's so very rare for anyone that young to have a truly well-differentiated breast cancer, not to mention 11 positive nodes with a well differentiated breast cancer.

dga1

I tried to go to the Adjuvant site but could not register since I am not a medical professional.

Is there a way?

Sigh.

CTMOM1234

ChoclateLover - You've been Stage IV for most of that 10 years, right? I'm sorry, but your post on this thread threw me for such a blow that I read some of your earlier posts and noticed one dated 2008 or so in which you'd written that you had been Stage IV for 8 years.

Maya2

I too decided against Tamoxifen. I was more frightened of it--due to family medical history--than I was of a recurrence. Instead, I have elected to take grape seed extract (which is being studied by the Mayo Clinic at this time as a natural AI). I made this decision with my doctors. We looked at the possibility of recurrence and it was very low. I did have surgery and rads. I'm 8 years out and no problems.