New Here, need advice

berwickbay

Hi,

I've been in and out of here for a few weeks since I was diagnosed on January 8th. I'm currently on Tamoxifen, with the MRI/Mammo testing. This is my 3rd surgery same breast, same doctor did all 3. I think she's very nice, and I feel comfortable with her. But here is my question, she put me on the medication and on this routine, but she is a general surgeon, she did not recommend an oncologist. Should I go out on my own and see one or just follow though. Also, my husband suggested about having a double mastectomy w/ reconstruction and be done with it. I'm confused. Any advice?

MsPharoah

IMO, you should be followed by an oncologist if you are taking Tamoxifen. And I think your instincts are correct that you should also have a consultation with a surgeon who specializes in breast cancer....and it wouldn't hurt to then get a referral to consult with a plastic surgeon. I am not saying what you should do because there are lots of considerations, but you should arm yourself with information and facts.

leaf

The place I went for a 2nd opinion (at an NCI-certified center), they have their breast surgeons prescribe tamoxifen for LCIS patients. IMO, I don't think that most general surgeons know too much about medications, unless they are directly involved in surgery. Certainly, if you have any other medical conditions, I'd rather have an oncologist, or at least an internist, prescribe tamoxifen for me.

Whether or not to have mastectomies is a very personal choice. There are risks and benefits with each choice. As MsPharoah said, you should really carefully inform yourself about all your options. There is no rush to make your choice, certainly if you have had a surgical excision. It may also depend on your actual diagnosis: whether you have classic LCIS or pleomorphic, or another LCIS variant (see your pathology report.) http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh... After my LCIS diagnosis 10 years ago, my breast surgeon refused to consider doing PBMs on me. (I have classic LCIS.) If I wanted one, at that time, I'd have to go out of network and pay mostly out of pocket.

I personally think that its easy to fall into the initial reaction of 'I don't want to have LCIS, I want mastectomies, and then my life will be exactly the same as before I had LCIS.' Mastectomies may be the perfect option for you, but your life will not be exactly the same as before you discovered your LCIS, no matter which option you choose.

There is no right choice for everyone. We, as humans, are notoriously bad about evaluating our risk for a condition, for a treatment, and for adverse effects. I think the issue is even more complex for LCIS patients because much is controversial. I think we have some more information about the long term risk of LCIS now than we did 10 years ago (when I was diagnosed), such as this http://www.ncbi.nlm.nih.gov/pubmed/26371145

No one can tell you how much your breasts mean to you, or how anxious/fearful you are of breast cancer. No one knows your medical and family history better than you do. No one knows your insurance coverage.

Whatever you choose (unless perhaps you choose not to get followed at all), no one should judge you for your choice.