Stage 0 DCIS with Pten mututation

Cynthia451

Is there anyone out there who has been diagnosed with DCIS and a PTEN mutation? All the doctors I have seen so far have suggested a double mastectomy as I also have a family history of breast cancer. But, I really don’t know what to do. I am scared that I will die no matter what I decide.

I know that you can’t tell me what to do, but I am really hoping to find people who have similar stories to me and see how they decided to handle thing

farmerlucy

I don't have a known mutation, but I do have a scary family history. I had a prophylactic mastectomy a bit too late. I did twenty years of high risk screening. Without a doubt I wish I had done the mx sooner. Once it is invasive you always have that chance of it recurring. You always have the uncertainty. Finding cancer at stage zero allows you to be proactive. Compared to the invasive cancer diagnosis the bilateral mastectomy mattered very little to me. It is what it is. Take your time, do your research, you'll know what options are right for you.

Cynthia451

Thank you

MassGirl55

Cynthia451 - I don't know where you live but perhaps you could send your records and pathology slides to Dana Farber in Boston? I don't have any idea what they charge but insurance may cover! Good luck and do keep us posted.

Cynthia451

Where does she practice? How do I know she will look at my information

SimoneRC

Johns Hopkins also does second look. And yes, invasive cancer stinks. Knowing my family history, how inadequate imaging can be for dense breasts, and if I had known about my mutation before my diagnosis I would have had prophylactic mastectomy. Good luck with making your decisions. I know it is scary and I am hoping all goes smoothly for you!

baddy247

I was diagnosed with PTEN mutation in August of last year. I had breast cancer (invasive/DCIS) in March 2016. I chose lumpectomy/radiation/hormone therapy because I didn't have the BRCA gene. Two years after, the medical team decided to test me for the other 25 genes associated with breast cancer and apparently I was positive for pten. In March 2019, I had a hysterectomy as I was diagnosed with uterine cancer. Thyroid was removed in 2009. I am now thinking of getting a prophylactic mastectomy with reconstruction sometime next year. Just take it slow. Being placed in the high risk column definitely is not fun.