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Topic: Not sure what to do/think

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 1, 2019 06:51PM - edited Jun 1, 2019 06:56PM by RunningLibs

RunningLibs wrote:

My initial mass was found during a routine mammogram. That earned me an ultrasound, and an appointment with a breast specialist. (Apparently, I have “extremely dense" breasts because I couldn't feel the mass... which was about the size of the top knuckle of my thumb.) Needle biopsy led to an ADH diagnosis, which was surgically removed. A second mass was discovered during the surgery. Both were benign.

That was back in November. My six-month followup mammon showed two new suspicious places, which scored me more mammo images, another ultrasound and an MRI. The docs think the two new places are fine, but I meet with the breast specialist next week and I know she wants to discuss potential mastectomy. I know I'm considered high risk, but not how high risk I am.

I spent the latter part of 2017 and the early part of 2018 in and out of specialist offices, trying to find the root cause of a CA-125 that's about 3 times the normal limit. So we've been living life between blood draws in 90 and 180- day increments for almost two years. The mental strainhas long since begun taking its toll.

I work at one of the top breast cancer university hospitals in the nation, and whatever my doc says, I'm going to a doc on campus for a second opinion.

All of that backstory to get to one basic question: How did you know when surgery was the right choice? Thanks

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Jun 1, 2019 09:44PM Beesie wrote:

Sorry that no one has replied to your post yet... Saturday nights are quiet, and there may not be many people here who have had situation like yours and can offer advice.

I can't answer your question - I've had many breast biopsies (fine needle, core needle and surgical) since I was 16 but they were all totally benign until I was diagnosed at the age of 49, so there never was any question about a mastectomy (MX) until I was dealing with a breast cancer diagnosis.

Why do you think the breast surgeon will raise the question of a MX? From my long-time experience on this board, it seems to be pretty rare for a BS to recommend a MX for a benign or high risk condition - it virtually never happens, in fact. Women who decide on their own that they want to have a BMX for ADH or after multiple benign biopsies often have to push their breast surgeon to agree and sometimes have to change doctors to find someone willing to do the surgery.

You mentioned the ADH. What were the two masses that were removed when you had the excisional biopsy last time? ADH usually isn't a mass, more often it's calcifications. The pathology report should have described the make-up of those masses, which could give an indication as to what your new masses might be.

If I may ask, what caused you to have a CA 125 test in the first place? And what specialists are you dealing with about that?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 2, 2019 11:56AM - edited Jun 2, 2019 12:25PM by RunningLibs

The CA-125 was part of the routine blood draw when I went for my annual physical.

From my needle biopsy path report: “Focal atypical ductal hyperplasia identified. Background breast parenchyma with proliferative fibrocystic changes, including sclerosing adenosis and apocrine metaplasia."

From the excision path report (different pathologist, same lab): “Complex Fibroadenoma without atypia, excised. Sclerosing intraductal papilloma without atypica, excised. Proliferative fibrocycstic changes. Micro Calcifications present in association with neoplastic tissue. No evidence of residual atypical ductal hyperplasia, in situ or invasion carcinoma."

I know my doc wants to discuss MX because she told me when she called with the MRI results. I don't know if there's more to the MRI findings than she let on; I guess I will find out Thursday.

Oh, I see a gyn oncologist every six months (used to be every three months) about the CA-125. Scans and a laparoscopy didn’t find anything suspicious (they/we all thought they’d find endometriosis but there didn’t), so now we just monitor it.

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Jun 6, 2019 01:14PM mmejlc wrote:

I have a family history and am BRCA2 +. I waited for years to have the genetic testing done (finally did at 41), but still thought I might hold off on any procedures for as long as I could. I did, however, want to have a consult with a breast specialist, just to find out about options. Part of the deal was having a mammogram. My first one was normal, showing dense tissue. Six months later - during which time I had my ovaries and tubes out as a preventive measure - the next one showed a little spot. The ultrasound showed the same spot, only clearer. The needle biopsy showed ADH. I called the breast specialist the next day for another visit. I had my BMX a month later.

It was the right time for me because I felt like I was delaying the inevitable. I didn't want to go for a mammo/ultrasound every six months, wondering if each time would be THE time. I don't have the capacity for that level of anxiety. I saw what my father went through with breast cancer, and I wasn't interested in that either.

It's such a personal choice to make - All the best of luck to you!

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Jun 6, 2019 01:38PM Moderators wrote:

Dear mmejlc,

Thanks so much for reaching out to our community and sharing your story. It means a great deal to us and to our members. We wish you all the best going forward and hope to see you around here.

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Jun 23, 2019 08:42PM footballmomma wrote:

I am in a similar position. My mom and my grandmother both had breast cancer. Luckily, both were caught early. I have been getting mammograms and u/s for the last 5 or so years. This years came back with a distortion. Fast forward to stereo biopsy. I get the results on Tuesday. The stress and anxiety has been overwhelming. I think I am going to ask about a bilateral no matter what just to understand my options at this point. For me, I also think this will be a when it happens, not if.

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Jun 23, 2019 09:19PM Trying2staypositive wrote:

I too am high risk-mom and grandma with bc (mom was Stage IV but grandmas was caught earlier) and my aunt with ADH. I too sometimes feel like a sitting duck. Looking into genetic testing mom is brca negative, but theyve come up with more genes since then.

footballmama- totally understand. Best wishes on Tuesday for a benign result.

My first result comes on thurs or fri on microcalcs, then I will get the biopsy for the arch distortion in a few weeks. The anxiety is really really hard. The family history makes me more afraid...

Ive considered a breast reduction for several years (im a DDD) which is not as risk reducing as a prophylactic mastectomy, or maybe at all ...but if all goes well I may get that reduction sooner than later. Hard to say what I would do if these result were anything but benign... bmx would be considered I think.I think its hard to know until you are there and is a decision specific to each woman. Seems like such a big surgery and my mom had some problems with her reconstruction...if you dont count her mastectomy and just reconstruction she ended up having 4 surgical procedures. (She was 58). It wasnt anything to do with the dr-she had one of the best-just the way her body reacted to implants then of course she had the nipple reconstruction. Then there are other women who seem to do fine.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 17, 2019 11:35PM - edited Jul 18, 2019 11:18AM by rjks

@RunningLibs: I had prophylactic (nipple sparing) double mastectomy (dmx) 10/2018. I waited five years after learning that I'm BRCA1 positive (now 40). I decided on nipple sparing because I've not been diagnosed with anything, and I didn't want to go through additional nipple surgeries or get tattooed. My plastic surgeon also told me that a natural nipple shapes the breast in a conical sort of way that modern science cannot mimic, so I chose vanity. I think my chances of developing bc are 3% instead of 2% (down from 90%).

It's a huge weight off my chest (literally!) having removed my risky boobs. And my breasts are pretty now, even though I need a revision surgery to fix a “dropped" implant, so they are a bit lopsided. I'm not sorry I did it, even though I'm still not back to myself since October. I think I'll be done once and for all by noon on August 2 (revision date). I guess it'll take another year to fully recover and feel as though these new boobs are really mine as well as be able to fully use my arms and chest muscles, but I'm not sad or anything (I was nervous I would be after cutting off my “old" breasts). And I actually feel strong, empowered, as though I've embraced life somehow.

I decided to do it because the time was right, though I was scared and had a friend tell me not to, that they're curing cancer now. But I figured it's all still statistical (some ppl still die), and I smoked for many years. I also had a dad pressuring me to do it (mom died of ovarian cancer after having bc twice), I had time off saved up, I had health insurance, and I turned 39. My mom was first diagnosed at 42, and I had had a scare already. When my little cousin was diagnosed at 30, I decided I'd rather have surgery on my terms than on theirs (after chemo/radiation and many tears).

For me, it was the right thing to do. My family helped me decide, and it's been a relief for all of us to know I've removed so much risk. The ovaries are next. My only advice if you decide to do it is to ask your surgeon to speak with other women who have undergone the same procedure, ideally nearby. It would have helped me a lot if I had someone to talk to (or even this blog) when I was going through everything. Phew! Good luck deciding what's best for you and your family-big hugs 🤗

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