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I am undergoing chemo for breast cancer following a lumpectomy (HER positive, ER/PR positive) and just found out that I have the ATM hereditary gene. I am considering a prophylactic double mastectomy but don't seem to be able to find clear guidance on this.
Some doctors seem to be advising pro a mastectomy while others suggest a twice a year breast MRI. I need to take the decision over Christmas as in January I normally have radiation therapy planned, which will not take place in the case of a mastectomy.
Would anyone have experience in clinical management of ATM gene BC cases? For those with the gene, what decision did you take? Did you opt for a mastectomy? And finally, as the gene affects rates for other cancers too, any experience on diagnostic pathways?
Thank you so so much, Aspa
Replies to "I am undergoing chemo for breast cancer following a lumpectomy (HER positive, ER/PR positive) and just..."
@aspapla, I'd like to add my welcome along with @drummergirl. I moved your question about clinical management of ATM gene for breast cancer and masctectomy or not to this existing discussion:
- ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care/
I did this so you can read the previous posts and connect easily with others @bmerxbauer @marciski @beku @zinath123 @lnduh66 @anelia and more who faced similar decision making.
Hi there,
I have the mutation of ATM and I don't have a cancer. However, I had the double mastectomy for my protection.
Don't forget that people with ATM gene have also high risk of pancreatic cancer.
4 months ago I just had pancreatectomy as I had a benign cyst that was growing fast for the last two years. However, I am still having a normal life as my pancreas is still able to produce enough insulin and enzymes because I am not diabetic and don't have in the family diabetic people either.
Tks.
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Hi Aspa- I had triple negative BC and the ATM gene. Like you, I had mixed medical opinions, but did decide to have a double mastectomy. There is not much information on the gene. Science is much more focused on BRACA. My oncologist has me getting a PET CT every 6 months head to knee. One medical expert told me I had a lifetime % risk of a cancer from the gene and I have now absorbed that risk with my BC. I do not believe that I am immune to other cancers, but possibly less likely. The good thing about knowing is that my sister and daughter could be tested. My daughter also has it. I have no history in my family and nobody expected I would have a BC gene, but I did. Everyone should get genetic testing, if possible. Knowing I had the gene helped to determine my chemo regimen of taxol and carboplatin. Read up on radiation and the ATM gene. You will find a fair amount on the subject and of course, differing opinions.