BC in family, surgerical history just had MRI, brest change...?

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Leeno6
Leeno6 Member Posts: 1
edited February 2016 in High Risk for Breast Cancer

Hi ladies, so to make a terribly long and stressful story semi short, here's the quick recap... I found my first lump on my left side at 23 and was told initially (by feel) it was a cyst. Ok, no worry there. But after 7 months I could tell and had a gut feeling they were wrong so I had it scanned (7 months later) by ultrasound and was told it was a solid mass then 3 months later ended up having a full excisional biopsy. 3 months later I found a new one in a different spot (same side - left), 5 months later they did an US scan and found2 new ones. Scheduled an US guided mammatome biopsy, while doing that surgery (which was 2 months later) they found a 3rd one as well but did not test or remove. During this surgery they placed clips in and did a mammogram of the left side which resulted in telling me I had the highest density. 3 months later they figured they should do their FU US scan but to include the right side as well. There were no drastic changes of the 3 on the left and they found 3 or 4 on the right. Just stayed so continue with FU US scan in 6 months.(by the way, the 2 biopsys came out to being complex fibroednomas) at a birad cat 4. Well come 2.5 month after the bilateral US scan my right side started retracting, which of course is a change. No not inverting, it is retracting. So I sucked it up and called in. They order bilateral US, no real change. Then ordered bilateral mammo, no real change but couldn't see much because so dense. Then just had an MRI done. Now my for my concern... I have a heavy family history of cancer. One with BC and one with Ovarian (moms side). The rest (approx 5) with lung and liver. The MRI radiologist I believe did not specialize in breast MRIs. I'm hoping to get a 2nd maybe even 3rd look to verify. My surgeon had that thought prior to MRI that I may have DCIS. So my new changes as of 2 months ago in my right (never biopsied side) is retraction and itchy skin - no rash and no dry skin. What and who should I be contacted for help with reading the MRI scans?? FL has terrible healthcare unfortunately. My primary thinks I should just do a mastectomy and my family agrees. I think that's drastic. Any help would be appreciated. This has been QUITE stressful. Not worried about outcome, my stress is coming from getting answers! I know my age is a factor which make me not worry, but the history is there and they too were young ( early 30s). I also have endo, have had 5 miscarriages and polycystic syndrome. So health concerns are pretty common with me. Please, some insight would be GREATLY appreciated!

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2016

    Before getting a mastectomy you should look into genetic counseling and being tested for BRCA 1 & 2 (and perhaps Chek2 or PALB) mutations--all of which are implicated in genetic predisposition to breast, reproductive and digestive cancers--especially at a young age. Could be a coincidence, or you could have a genetic mutation. At any rate, you should be seen at a Breast Center of Excellence--a family doc’s opinion should not be the one upon which you rely when making such a momentous decision. And your family are not surgical or medical oncologists. It’s your body, not theirs. (They should get tested, too, if you are found to have the mutation). Your MRI should be done by a breast radiologist, and before you decide to have surgery you should at least see a breast cancer surgeon.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2016

    I can't believe any doctor is telling a 23 year old to get a mastectomy for fibrocystic breasts. Even multiple fibroadenas. She might have family history, but she didn't say first degree relative.

    Can you get to Tampa to go to Moffit? I'm sure they have a breast clinic?

    Even if your mother was a BRCA carrier you would only have a 50% chance of having it yourself, it feels like there must be some poor communication here somewhere

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited February 2016

    Hi Leeno6,

    I'm sorry for your worry. Where in Florida are you? I was born and raised there and only moved away in the last couple of years. I was still living in Florida when I was diagnosed. I went through treatment at Moffitt in Tampa and they are absolutely fantastic. They're the only NCI-designated Comprehensive Cancer Center in the state of Florida. I realize you're not a breast cancer patient, but I believe they have a high-risk clinic, or so I've been told. I do know for certain that they have a good genetic testing program.

    Even talking about mastectomy now seems to be a bit premature. For me, it isn't your age (I'm positive for a BRCA1 mutation and my daughter is as well; she had a prophylactic bilateral mastectomy and reconstruction at age 20). I realize that your family history of cancers is worrisome, but I think that you should sit down with a genetic counselor and map out family history so that they can give you the best advice on your testing options. Ideally, a family member with cancer (called a proband) should test, but that isn't always possible. Without your having received a cancer diagnosis and in the absence of a confirmed deleterious mutation in your family, getting insurance coverage for a mastectomy would likely be extremely difficult. The exception in the absence of both is usually a very compelling family history of very specific cancer diagnoses in the same side, along with a lot of back-and-forth between your doctor and the insurance company's doctors. I realize it was your primary physician that mentioned the mastectomy rather than the doctors you've been seeing for the breast issues; however, I think you may run into some pushback from surgeons without a diagnosis or a genetic mutation present, but I do know that it isn't impossible to find a surgeon who would be willing. I know that you weren't advocating for a mastectomy in your post, I just wanted to highlight that it would likely be very difficult for you to get one at this point.

    My advice to you would be to try to see if Moffitt can read your imaging, and whether they can or not, I would try to begin the genetic counseling process. There are many wonderful doctors in Florida, in fact, my surgeon at Moffitt still remains my hands-down favorite doctor of any specialty that I've ever seen anywhere.

    Hope this helps some.

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