Got pathology results but waiting to speak with Dr -- insight on options?
Hi all, long post to give context but the TLDR is — what to do about a large lump with high-risk/atypical findings (but not necessarily malignant) and positive-margins in one breast five years after early stage cancer in the other breast?
Five years ago, I had a lumpectomy and radiation for stage 1 ER/PR-negative cancer in my right breast. Several years before that, I had had a lumpectomy that revealed a hamartoma and PASH on the same side. Hamartoma is generally benign but I was young at the time (in my twenties) and it has been steading growing over the year or so we had been monitoring it via imagine and biopsy, so the breast specialist felt we should just get it out. Now I wonder if that could have been a precursor to the cancer found (thankfully at a very early stage!) years later.
Fast forward to now, I am 43 yo and still breastfeeding my two-year old, all of the left side (the cancer side never produced milk and I would have been reluctant to give my baby milk from a previously radiated breast anyway). I resumed mammos and MRIs (alternating every 6 mos) after the baby was born, though the notes on the reports all mention that masses may be obscured by lactational changes.
Then about a year ago, I discovered a palpable lump on the left (breastfeeding) side. I tried to stay calm and assumed it was likely lactation-related but was still eager to get it checked. It was a noticeable mass on imaging with inconclusive features and biopsy a year ago dx it lactating adenoma.
It continued to grow and become more tender and noticeable so my breast surgeon from five years ago advised removing it especially if I wanted to continue to breastfeed for awhile. I don't take for granted what a privilege it is to be able to breastfeed after breast cancer and have been in no rush to wean / wanted to let my child's readiness lead the weaning process.
So lumpectomy was almost two weeks ago. They removed a sizeable mass (7.25 Cm x 5.5 cm x 4.5 cm) which I was still assuming to be a lactating adenoma based on prior biopsy but the pathology results show it is a large hamartoma with focal areas of Atypical Ductal Hyperplasia, as well as FEE cells (also atypical) mixed with benign tissue (fibrocystic changes, lactational changes). The report also shows positive margins and some IHC testing that supports the presence of high risk atypical cells throughout.
Now what? Anyone been in a similar boat?
Obv. next step is to talk to my Dr but she is away until next week. I haven't spoken with anyone about pathology report yet just read it myself. If it was my first time with a finding of a hamartoma and ADH, I'd probably err to the wait and see / keep monitoring approach, but since I already have a history of hamartoma and atypical cells preceding cancer on one side and positive margins from the excision on the new side (and now that I have a kiddo in the mix to consider), I am def feeling much more concerned about what should be done to reduce risk.
What should I expect as options from breast surgeon / oncologist? And what have you chosen in similar situations (or would you choose, though obv a very personal decision)? I'm guessing the positive margins would mean a re-excision is needed? Do I go for a full mastectomy? Seems like a very aggressive response to something that is not yet malignant and I was grateful to choose lumpectomy vs mastectomy five years ago, but now am more nervous about what could get left behind esp since imagining will be less reliable until the changes from lactation hormones subside (which would be months after weaning - and obv the mastectomy would mean I need to wean).
I have been told multiple times that I have have "busy breasts" so I imagine that with a wait and watch approach, there will be more findings over the coming years, which I could be OK with as someone who is not usually overly anxious but maybe better to be more proactive about now? I don't have any known family history of BC or genetic risk factors after lots of testing and my lifestyle risks are low (longtime vegetarian, no alcohol, healthy weight, etc.) but I did have a lot of spinal x-rays as a kid (scoliosis) and have seen studies linking the accumulated radiation exposure during childhood/adolescent development to increased risk of BC.
Aside from surgical options, what else should I be asking Dr when we finally get to talk? Other tests I should be asking for? Other ways to get a better understanding of risk levels?
I realize Tamoxifen may be an option, though def have felt scared off by all the side effects others have reported. It wasn't an option with my prior dx because it was hormone negative. Don't know the hormone status of this latest mass or if that's even detectable for ADH. Has anyone taken tamoxifen or other meds for chemoprevention for ADH pre-menopause and how did it go for you?
Thanks sooo much for your thoughts and experiences and best wishes to all wherever you are in the journey!
Comments
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Moonflowerandpoppy, I'm so sorry you are in this situation now especially having to wait a week to talk to your doc. Right now, if you can, I would stay away from looking up what Dr Google has to say. Of course you need lots of clinical information - I never suggest this but I would consider looking at having a mastectomy as you have 'busy breasts', you are young and you have a young child. Sixteen years ago i was terrified when I was diagnosed with breast cancer, didn't know what I would do and all of that. What I found was a wonderful surgeon, radiologist and oncologist. The were excellent, excellent doctors and 'down to earth' and kind. Every time I left an appointment I couldn't believer how nice everyone was. So be sure you are comfortable with your doctors - my wonderful oncologist was a second opinion doc and he was so easy to talk to. Prayers coming your way.
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