ILC Reoccurrence with skin involvement

MichelleMME

Just wondering if there are others that have had similar diagnosis and what course of treatment did you take if so.

I was diagnosed with a reoccurrence of ILC in my right breast mid Aug 2016 with skin involvement after having lumpectomies/radiation back in 2013/2014 for ILC (right side) and IDC (left side). Surgeon and MO were concerned that IBC was involved and started me immediately on a course of dose dense chemo. Two week ago I had a MX on right side. Surgeon refused to do the left prophylactically at the same time since I was not a candidate for immediate reconstruction and she was also primarily only concerned with getting me cancer free.

I got my drains out today and the pathology report back with mixed news. Good: no lymph nodes involved 0/10 and no IBC. Bad: Did not get clean margins in the skin and surgeon says she can't remove anymore of the skin as there wouldn't be enough to close the wound. So now she and my MO are recommending more radiation (already had on both sides three years ago) and hormone therapy that includes the removal of my ovaries now.

Have to admit that I am struggling with idea of removing my ovaries and another course of radiation give the doses I received last time.

vlnrph

Those are some challenging circumstances michelle: not my personal experience but hopefully you can become comfortable making the choices that will be best for your situation. Let us know how it goes...

One factor which could help inform your decisions may be genetic counseling. Having been diagnosed with two different lesions at a pre-menopausal age should qualify you for insurance coverage of this service, even without strong family history. There is much more to be concerned about besides BRCA 1/2 these days.

Sometimes, having a hereditary mutation might steer people away from additional radiation. I heard a local breast surgeon describe her process of risk evaluation changing when this issue is present.

Lexicoe

I wish I could help with some personal experience, MichelleMME, but hugs to you for going through this!

Vlnrph has a good idea about the genetic testing.

I am surprised they're recommending radiation again--I thought you couldn't have it again after getting whole breast the first time?

I have looked a little into the ovary removal a little as a way to go onto AIs instead of tamoxifen--an oophectomy I believe they call it--and it sounds like it's a fairly simple procedure, if done laparoscopically. I'm 47 and probably pretty close to menopause anyway, but part of me is mad that BC is taking yet something else away.