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Mar 6, 2020 09:25AM
Mar 15, 2020 07:18PM
1) Second opinion: I didn't get a second opinion, but from what I've read and experienced, there can be some variability in diagnosis and treatment options. If you've had some scans already, your second opinion can just be having another radiologist review the scans, confirming whether they think it's DCIS, the size, the recommended treatment.
2) Lumpectomy vs. mastectomy: I think you are considering all the right things: your risk - what you can deal with now - what you want to deal with in the future - and also about where you want to end up in a year or ten years from now.
Advice from my experience -
I would ask the doctor what your potential paths might look like. I was told my options were lumpectomy or mastectomy. I picked lumpectomy.
For some people that works out, but my path ended up being: lumpectomy > re-excision > mastectomy. I'm a somewhat unique case (Paget's/42 at diagnosis), so don't go by me - but I wish I'd had a more complete picture up front. Some doctors might be reluctant to share this info, because they don't know (some things you just don't know until the surgery and pathology stage), and don't want to unnecessarily worry people, but I know my husband was irked we weren't told some things (like multiple surgeries) were a possibility.
Re-excisions appear to be somewhat common - I've read anywhere from 25-50% - so ask your doctor if they have an estimate on whether you'd need a second surgery/re-excision. It's not a big deal, but if you're taking time off work, etc. - it's good to know, be prepared, and have a plan.
I also didn't realize how high* my risk of recurrence would be after mastectomy. *[Edited to add that I recently met with my BS again and she estimated my recurrence risk as being very low; I remember my oncologist telling me a different stat, but maybe I misunderstood.] Again, an individual situation, but I think it's always good to have as much info as you can, and know what to keep a look out for going forward. Some of this (like % risk recurrence) they might not know until after surgery, when you get the grade, type, etc. I only share because it turns out mastectomy wasn't a 100% bulletproof solution, although it's a good one. (*knock on wood* doing great so far).
Because I ended up needing the mastectomy, they didn't do radiation after all. Personally, I was kind of relieved - but I don't think it's as bad in reality as it was in my head. A lot of this stuff is a pain at the time, but you get past it. My DCIS was effectively hormone negative (very low %), so I did not get Tamoxifen either.
I only had one breast removed, so I still get mammos and MRIs on the remaining one, and chest wall. This sounded like a good plan to me, so I went with it.
Everyone's path is different: you just figure out what you want (because both options are good options), go with what you know at the time, trust your gut, and keep on moving forward.
Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER.
11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC)
11/10/2018 Lumpectomy: Right
11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR-
12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel
12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-
1/15/2019 Mastectomy: Right