My doctor is not offering Tamoxifen, but I want it.

SanFranKitty

I'm 45 and I am two weeks post op bilateral skin sparing nipple sparing mastectomy. I had stage zero DCIS. There was some necrosis so i don't know why it was zero but it was. Area was about 3cm. They were areas with calcification. Original estimate was under 1cm. I guess the mammogram didn't see it all. Crazy. Anyway it was hormone sensitive or positive I guess they call it. I opted for a double mastectomy instead of a lumpectomy and after it was all over the surgeon said that I probably made a good choice because she would have had a tough time getting clean margins.

She doesn't seem to feel I need tamoxifen. But I want it. I would rather be extra safe then sorry. I know some doctors will prescribe it in a situation like mine and some don't. Should I see a different doctor?

A friend of a friend had cancer come back in a small area where there was breast tissue in her rib cage.

P.S. Off topic. Also why don't we all get MRIs if they are the best detection?

Anonymous

I would see if you can get an appointment with a Medical Oncologist, since they know more about hormonal therapy than a surgeon. They could go over the risks and benefits and might be able to give you a percentage benefit.

As far as MRIs, I was told that mammo shows calcifications but MRI doesn't, but MRI is good for high risk people and tends to find things much earlier. My onc said that even if I get yearly MRIs, I would still need to get a regular mammogram.

SanFranKitty

Thats very interesting about the MRIs. Well I am going to look on yelp and see if I can find an an oncologist. It's weird but I was never given one. Just sent straight to the surgeon after diagnosisa and then to the plastic surgeon.

SanFranKitty

By the way the more I think about it the weirder I think it is that I was not sent to an oncologist along time ago. Did they feel I didn't need one? Is that why they just sent me straight to a surgeon. Why is it that I'm so uninformed that I have to figure these things out through a forum?

Makes me sad.

BarredOwl

Hi SanFranKitty:

I agree with LovingisLiving that endocrine therapy is within the expertise of medical oncologists ("MO"). With pure DCIS, seeing an MO prior to surgery would have made no difference in your treatment plan.

I had a similar experience with my surgeon. I thanked her for her opinion about endocrine therapy, and requested a referral to a medical oncologist "for further discussion" of the option of endocrine therapy and my risk/benefit profile. Regardless of what you decide, it is important to make an informed decision with the benefit of expert input and advice.

Perhaps you can find an MO at UCSF, which is an NCI-designated cancer center:

http://www.cancer.gov/research/nci-role/cancer-cen...

BarredOwl