Any patients who didn't take Tamoxifen? Need feedback

newyear13

I was diagnosed with invasive ductual carcinoma with tubular features in Dec. of 2012. The stage could not be determined at the time. In January of 2013, I had a bilateral mastectomy. Final pathology showed early stage 1 cancer and that it was less than .2 centimeters, and apparently all taken at time of biopsy--no residual cancer found. They did discover an area with atypical lobular hyperplasia--with mastectomy it's all gone. Onc. said because of mast. I avoided radiation, and that chemo in my case was unnecessary. Additionally, he stated because the tumor was so small and caught at such an early stage, he is not recommending tamoxifen as the potential side effects outweigh the potential benefits in my case. Prior to consult, a panel at my hospital (surgeons, radiologist, and oncologists) reviewed my case and agreed tamoxifen would not be recommended.

I'm hoping to hear from you all who didn't take tamoxifen. I my cancer was caught very early, but of course I still worry about it coming back. Thank you!

tgtg

Newyear13--In Dec. 2012 I got the same IDC diagnosis, including the tubular element but no lobular traces (stats below), and had a a lumpectomy in early Jan, folloiwed by rads. The med onc (whom I saw once and then spoke with on the phone to get my oncotype #) of course recommended hormonal therapy (don't they all?), but I declined it. My surgeon, by the way, concurred with my decision and continues to do my follow-ups ad inf,, along with my rad onc, in the absence of an MO. At my age (71 then), the risks of comorbidities from either anti-hormonal drug far outweighed any potential gain from messing with Mother Nature as far as I was concerned, and the idea of taking a second ... or third... drug to counteract side effects of the anti-hormonal drug was also not acceptable--I believe that we as a country are over-medicated, thanks to aggressive advertising and marketing by the pharmaceutical companies that promote the idea that there is "a pill for every problem." . I keep my weight down (I lost the 15 pounds I had gained in the 18 months before dx), exercise faithfully with a regular fitness routine, do yoga, eat even more healthily than before dx (cook from scratch, use local farm and organic produce as much as possible, and follow the ancient Greek dictum of "everything in moderation, nothing in excess"), laugh a lot, avoid stressing out, and take vitamin D3 to keep that level up, Two and a half years out, I am happy and healthy, and if I should recur or develop a new tumor I will deal with that rationally when and if it happens--but I won't stress out about it now, All that said, though, I know that this was the right decision for me at my age, but you give no indication of your age, so this reasoning may not be appropriate for you, although your physicians seem to think you don't need anti-hormonal treatment.

vlnrph

I agree with tgtg regarding the age consideration. I am aware of older ladies who have been able to decline endocrine/hormonal therapy and even radiation.

Curious as to why newyear had bilateral mastectomy done if her biopsy had clean margins. Is there a strong family history of cancer?

april485

vlnrph, many women choose bilateral mastectomy when diagnosed due to not wanting to ever deal with rads and also because they feel that mastectomy gives them a few percentage points more when it comes to worry about recurrence. Even those with DCIS (my diagnosis) sometimes opt for mastectomy if given the choice and if insurance will cover for the same reasons. One size does not fit all. I chose lumpectomy (and had to have two due to a close margin that was clean but too narrow) but I could have opted for a double or single mastectomy if I wanted to. Hope this helps to answer your question. Family history could play a part but it doesn't have to.

vlnrph

Yes, and many women also choose surgery over the prospect of undergoing intensive screening (periodic MRIs, etc) perhaps for decades, especially if there is genetic risk. Some have begun to describe this as overtreatment but at least for now it's good to have options! It can be a very difficult decision.

Sorry I couldn't answer our original poster with personal experience however I think others will respond soon.

peggy_j

I understand your concern. Posting here can be helpful but it's sort of a sampling of random responses. There are a lot of studies on who benefits from taking tamoxifen. Your doctor probably plugged all your data into their modeling tool and should be able to give you an approximate "benefit" of taking tamoxifen. i.e. how much you'd reduce your risk of recurrence. Mine was open about discussing it. Yours should be too. There's a tool that's available for the public called Cancer Math

http://www.lifemath.net/cancer/

Hope this helps.

tgtg

I forgot to mention that cancermath tool that Peggy refers to. When I plugged in my stats into the model (using just the riskier ductal carcinoma type, not even the tubular) for three hormonal treatment choices (none, AI, tamoxifen--the latter would have been my route), the model predicted that I would only live a whopping 3 months longer if I were to do hormonal therapy than if I did nothing! Now that was a no-brainer for me, especially since I have no health problems other than the excised tumor and wasn't about to introduce high risk for stroke and clots into my life! And an extra 3 months wouldn't make a significant difference at 87 anyway! TG

newyear13

Thank you all for your feedback. I was 47 at the time of diagnosis. I do have an aunt and a cousin (my aunt's daughter) from my mother's side who both had breast cancer.

Vinrph, I chose a bilateral mastectomy for several reasons. First, my doctors did assert that in my case it was more effective than lumpectomy to avoid the risk of recurrence. Second, one of my surgeons did recommend mast. because of the extreme density of my breasts and concerns that I may not be so lucky detecting a recurrence. Third, I did not want to have radiation. Now, in the event of recurrence, I will still be able to get radiation, which I could not do had I had a lumpectomy with rads. Fourth, over the years I'd had numerous call backs from my doctor after my mammos. I had my first biopsy at 31 because the doctor suspected breast cancer. I did not want to deal with constant screenings and worry anymore. As I mentioned, I had extremely dense breasts making detection very difficult. In the totality of the circumstances, I concluded a mastectomy was the most effective way to go.

I did not think, however, that by having the mastectomy I would be avoiding tamoxifen. Some do consider a mastectomy in this case over treatment, but in doing the mastectomy it turned out that I avoided tamoxifen and all the possible problems that come with the drug, so I don't consider it over treatment, but the most effective treatment in my case. Still, I sometimes can't help but second guess about not being on tamoxifen. Thank you all for your feedback!!