Has anyone dealt with DCIS and TP53 gene mutation?

Communities›HER2+›Has anyone dealt with DCIS and TP53 gene mutation?

CO

Community Member

a year ago

I was recently diagnosed with DCIS stage 0/ grade 3. ER/PR negative and HER2+. My genetics test came back that I have the TP53 gene in stream and Li-Fraumeni Syndrome. I have chosen to have a double mastectomy with reconstruction, which I am in the process of reconstruction now. My pathology test came back the 1st time showing my margins were not clean so a second surgery to get clean margins was done and successful but clean margins are 1mm instead of the 2mm that they like to see. They are telling me that because of the cancer being caught early and having a double mastectomy, I don't need any further treatment. I am worried that with no precaution treatment having the TP53, HER2+, and the small margin, I am worried about reoccurrence. Has anyone else had to deal with something like this?

4 comments

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Accepted Answer

Having DCIS with Li-Fraumeni Syndrome certainly brings unique considerations that many in this community may relate to, and it's completely understandable to have concerns about treatment decisions when dealing with multiple factors. While each situation is different and treatment plans are highly individualized, connecting with others who have navigated similar genetic mutations or DCIS diagnoses might provide valuable perspectives and emotional support during this time.

3+ patients found this helpful

AM

Community Member

6 months ago

Hi, Coreena. Wondering about what were your actual post-surgery steps. I’ve only met the surgeon so far and the impression that I got was that chemo was very likely due to HER2+, despite tumor being quite small.

1

AD

Community Member

6 months ago

My dbl mastectomy was May 17. I was told 1 chemo to 2 HER2 treatments every 3 weeks for 12 months. I also was told by oncologist I had option to not do treatments & just take 5 year pill similar to what you were told beings was caught early. I stood my ground and told them..my body/my choice- I'm doing treatments to stand a better chance of nonreoccurance. Do what's best for you & if oncologist doesn't not willing to give option..seek 2nd opinion

1

AM

Community Member

6 months ago

Thank you, Alicia! Sending positive vibes!

CA

Community Member

2 months ago

Having DCIS with Li-Fraumeni Syndrome certainly brings unique considerations that many in this community may relate to, and it's completely understandable to have concerns about treatment decisions when dealing with multiple factors. While each situation is different and treatment plans are highly individualized, connecting with others who have navigated similar genetic mutations or DCIS diagnoses might provide valuable perspectives and emotional support during this time.

Has anyone dealt with DCIS and TP53 gene mutation?

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