Genes and radiation

Laura666

hey gals,

Does anybody know if radiation is not recommended for people with a gene mutation because it could damage the dna even further?

I am waiting on the breast cancer diagnosis but it's 95% certain i have it based on mammos, US and MRI. Looks like DCIS but am waiting for the biopsy to tell me that it's not worse.

I would love to keep my breasts but from everything i read, looks like mastectomy would be better for me because of the gene mutation i have which is called CHEK 2.

And just fyi, i already had thyroid and colorectal cancer , all before 39! So this breast thing is another blow, so soon after the colorectal one.

Thank you for any info

4girlsmom

Laura 666, I am so sorry you have been through so much. I also have had thyroid cancer- I had a total thyroidectomy in Nov.

I also have chek2 and have been given differing opinions re radiation. I spoke with UCSF breast center and they said they were trying to do less radiation if someone had Chek2. I went to visit a Chek2 expert in Boston (Dr. Nadine Tung) who said that chek2 should not impact whether radiation is done. There is a paper on Chek2 which shows concern for doing radiation with it, but from my research there doesn't seem to be firm agreement either way.

Molly50

I had radiation and have Chek2. The decision was made because it is not clear if the radiation would be harmful vs the benefits.

gracie22

There have been a couple of posters who have talked about their mutations known to cause susceptibility to radiation-induced cancers (RAD50 and Li-Fraumeni Syndrome), making avoidance of radiation necessary for them. Some researchers think that the CHEK2 gene is related to Li-Fraumeni, but that does not seem to have been definitely established. One of posters with Li-Fraumeni said that the Li-Faumeni Association was very helpful and provided a lot of info over the phone/email. They may be able to give you more info on CHEK2 given its possible tie to Li-Fraumeni, www.lfsassociation.org Hoping your biopsy is benign.

fleur-de-lis

Laura, I think that you are smart to look into this issue.....I have an immune deficiency ( CVID) that affects my B and T cells....long story short, in a recent issue of the "up-to-date" medical journal, an article was posted regarding immune deficiencies and radiation....with CVID, they recommend keeping testing that involves radiation to the minimum. If I ever require radiation, it has to be absolutely the lowest dose possible, and for the shortest duration of time, We do not repair the DNA damage done by radiation to our healthy cells such as a otherwise healthy cancer patient would. We also deal with low WBC counts and low Natural Killer cell counts. Rads and chemo just blows a complete "hole" in our immune systems, very simply put. They have found two genes that are implicated in CVID, so I hear ya regarding it being a concern

Besides for the link posted by Gracie22, reach out to the NCI, and the assoiciation for rare disorders, as they might have additional information for you. The NIH is another possibility.

Laura666

Thank you all. I got my diagnosis- DCIS indeed, grade II/III, hormone receptive. I am leaning towards unilateral mastectomy for two reasons: to avoid radiations and because anyway, i think given that it's genetic, i should have a prophylactic mastectomy- possibly double- eventually . Maybe even have my ovaries removed soon.

I appreciate your replies and info. Very tough decisions to come

argynis

Opt for the bilateral mastectomy!

I also have a gene mutation (Li-Fraumeni) and decided to only have a unilateral mastectomy after my initial diagnosis 3 years ago. I also decided against radiation to not cause additional radiation induced tumors.

This year I have to deal with this crap again: I had ultrasounds/MRI's every 6 months and my remaining breast was monitored closely, but I still had a new 1cm tumor grow within a few months and now I need chemo again. If I could only turn back time - I deeply regret not choosing a bilateral mx in 2013...

gracie22

ugh, so sorry argynis. Would you/your docs consider doing the mast and perhaps Herceptin only since you are dealing with a small tumor and no nodes (I assume)? Seems so tough to go through chemo again so soon with such a small tumor.