Wondering if I'm taking the right path...

Posted by copingatround2 @copingatround2, Aug 17 12:25pm

Hey everybody. I'll try to keep it short. Just had a 2nd lumpectomy last week. Diagnosed with DCIS last December. Had a rough time deciding between mastectomy and lumpectomy (took about 6 months). Genetic testing showed PALB2 mutation, but no known familial history. Had a fibroadenoma removed from my right breast 25 years ago (when I was 16); no other issues or testing until these past 2 years. I have dense breasts and thus far most of the spots they've found have been relatively small (like .5cm- plus or minus .1-ish). 1st surgery back in May (DCIS-left, radial scarring-right) margins weren't clear, and had spread to a couple spots outside the duct. 2nd surgery (only on the left) with lymph node testing. Clear margins. Found 1 node with cancerous cells. Awaiting post-op follow up.
Got a few different opinions when deciding on the first surgery. A couple different physicians were conversationally leading towards mastectomy, but said it was ultimately my choice. One very pointedly said I did NOT need a mastectomy at this juncture and that I should reduce my controllable risk factors first (with the lumpectomy and radiation).
I considered the mastectomy for a bit, more so for the peace of not worrying about it anymore. I am not wholly concerned with the cosmetics (2nd lumpectomy was only on the left and now has a little deformity) and would not do reconstruction. But I just didn't quite see the point of - blowing up the whole house for just a few ants.
Maybe I'm in my head about it, but it seems like even though I've killed 100 ants, there's just one more little bugger hiding, and maybe getting bigger. I haven't done any chemo or radiation, but my first thoughts say see this path through, no matter how arduous, and do a mastectomy as a last resort.
On the other hand, I've already had 3 surgeries. I have a gene mutation. While I'm nervous about cutting off part of my body I've had since I was 8, I can't say I'd be mad about never wearing another underwire! Why am I putting off the inevitable? Am I ignoring the signs and setting myself up to get something much worse if it comes back?
Thanks for reading.

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@myoga

Thank you for pointing out that the research is about metastasis, not recurrence. Unfortunately there is no reliable test to predict cancer metastasis. We just have to watch out for symptoms.

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@myoga and what symptoms? Pain? Many of us older folks have osteoarthritis and I have fractures, neuralgia etc. etc. so just not sure what to watch out for. Most people I know found metastasis through imaging for something else. I cannot do contrast and the imagine I have says specifically that without contrast, it is hard to see tumors. I am just accepting this situation most of the time.

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I guess there’s no specific symptoms to watch out for! It’s hard to distinguish between aches and pains from bone metastasis and those from old age diseases. Someone told me that the latter goes away after moving for a while. I’m sorry you can’t do contrast imaging. I pray you never have to deal with metastasis. Wish you all the best.

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@kathyomaha55

I don't mean to upset you - I'm sure your decision was correct for your situation. You asked why they said that & I was just replying to your question about the panel discussion I went to.

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Oh my, I am not at all upset. I would never suggest this is for everyone. I did not feel that I got all the information I needed from Drs. Just sharing my own personal experience.

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