Just diagnosised don't know what to do

mcfarle

At the end of February I was diagnosised with DCIS I got two opinions, both recommended lumpectomy followed with radiation. We had a beach trip planned for the end of May both surgeons said I could wait until after vacation so lumpectomy was scheduled for May 26th.

Genetic testing was recommended due to all the cancer on my dads side - dad died of lung and also had throat, his sister died of breast and colon cancer, him mom died of lung and his dad died of pancreatic cancer. I thought that the genetic testing wouldn't show anything. Wrong again I have Chek 2.

Back to both doctors, one doctor says double mastectomy other dr says its is my choice lumpectomy radiation with follow up every 6 months (MRI and then mammogram) or double mastectomy. I have been to two plastic surgeons. I don't even know if I want to do reconstructive.

I don't know what to do. Any suggestions advice thoughts questions to ask would be appreciated.

ChiSandy

I don’t have family history, but I’m Ashkenazi Jewish so when after my lumpectomy my MO asked about my ethnicity, she insisted I get genetic counseling and testing before starting radiation--because it’s much harder to reconstruct a radiated breast (can’t do implants, so recon would mean a flap). I decided if I tested BRCA positive I’d get a bmx and oophorectomy, because with one breast cancer there’s enough waiting for other shoes to drop, without constantly worrying about getting ovarian and contralateral bc.. Fortunately, I tested negative for both the BRCA mutations as well as PALB and Chek 2. So I went ahead with rads and kept my “other bits,” at least for now. (But now I’m on pins & needles, getting an already-removed atypical mole more widely excised tomorrow to find out if I have melanoma...which killed a half-aunt on my dad’s side. It’s always something).

Molly50

I have check2 as well. My sister has it as well as my daughter. I had a unilateral mastectomy last September but decided recently to have the other breast removed rather than worry about another cancer. It's really up to you but with a strong family history make sure you get monitoring for ovarian, colorectal and thyroid at the very least. I am curious, did you get genetic counseling along with your test? That should help you make up your mind.

You are correct that the decision about reconstruction is not to be taken lightly. You have time to think about it. Do your research and talk to a genetic counselor if you haven't already.

BarredOwl

Hi mcfarle:

I am sorry you seem to be receiving conflicting advice regarding surgical options. This raises some questions about the import of the change in Chek2 that you have.

-- Have you met with a Genetic Counselor regarding your genetic test results?

-- Have you been advised what your lifetime risk of breast cancer is as a result of the specific Chek2 change you carry? Does the test report include information about lifetime risk with that specific change?

--Also when you say you "have "Chek2", do you mean you have a known "pathogenic" mutation in Chek2, or do you have some other kind of change in Chek2, such as a variant of unknown signficance ("VUS")?

BarredOwl

kmgbars732

Hi mcfarle,

The decision is completely up to you. You have the information you need to make the best decision for yourself.

I was diagnosed in March 2016 at age 36. I did the genetic testing and tested negative for every single thing they could possibly test me for.

However, I am still having a bilateral mastectomy (with reconstruction, since I am so young). Here's why: my mother was diagnosed with breast cancer at the same age, same type (triple positive). She opted (in 1991) for just mastectomy on the one side, chemo, radiation. Nine years later, she was diagnosed with a second primary breast cancer in the other breast. Mastectomy, chemo, radiation again. Different type of cancer (though I don't seem to recall the type on this one). She tested postive for a BRCA 1 mutation with VUS. I do not have the same BRCA 1 mutation. I do not have any mutation (which I find a little hard to believe).

Regardless, I opted for the bilat because I just don't want to go through this again. EVER. I would have my ovaries out too, if they would allow it. I joke that they can take anything I don't absolutely "need" - spleen, appendix, whatever!

Please let us know what you decide to do and if you have any questions. The folks on here are extremely knowledgeable and helpful as we go through these difficult situations and make the hardest decisions of our lives.

Be well,

Kelley