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Fetal adenocarcinoma mutation: How to talk genetics with family?

Posted by gprior @gprior, Jun 26 1:34am

My husband passed away in march this year after a 3 month with metastasis fetal adenocarcinoma, a very rare cancer. I have since learned he had tp53 mutation and lfs and that it is genetic and our children and grandchildren should be tested. I am afraid to tell them this because if they do have it it probably cant be cured. Any advice gratefully accepted, thanks in advance Gloria

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gprior | @gprior | Jun 29 9:44pm
In reply to @lls8000 "Gloria, @gprior, You want to protect your family from more pain and worry. You have all..." + (show)
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Gloria, @gprior, You want to protect your family from more pain and worry. You have all been through so much recently. I don't think anyone would blame you for waiting a bit to make this type of decision.
Your children have watched the cases of cancer in the family, and they may already have a sense that they may be more prone to some cancers than average. Their doctors should pick up on this too if they report the family history at those appointments.
You would be telling them about results related to your husband. These results don't mean that they will have the gene. Even if they do have the gene, it doesn't guarantee that they will get cancer in the future. We're still learning so much about how these genes impact our bodies.
I have a CHEK2 gene that experts aren't really sure what it can impact, but I've had two cancers, so far. I'm living a good life because the cancers were identified and treated. I've told my sister (cancer free) about the CHEK2. She hasn't been tested, but she is aware. You mentioned that your husband's sister was treated for early stage colon cancer and is doing ok. Knowing that they may have a propensity to cancer might help to get diagnosed earlier rather than later.
You could always pass along the information and let them decide if they want to move forward with the gene testing or not. They are adults, possibly taking the burden off of yourself and let them decide may be best. You know your family best. Also know that there are genetic counselors that are very good at guiding people through this process. Sending hugs and wishing you peace.

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@lls8000 thank you so much for your input, I really do appreciate everyone's thoughts and advice. You are right my family may take the initiative themselves. Again thank you ..Gloria

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Colleen Young, Connect Director | @colleenyoung | 2 hours ago
In reply to @gprior "@lls8000 thank you so much for your input, I really do appreciate everyone's thoughts and advice...." + (show)
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@lls8000 thank you so much for your input, I really do appreciate everyone's thoughts and advice. You are right my family may take the initiative themselves. Again thank you ..Gloria

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@gprior, I might also add that you don't have to navigate this alone. You can talk to a genetic counselor. Genetic counselors have advanced training in genetics and counseling. Their background enables them to provide education about genetic diseases and testing AND emotional support as you process information and make decisions.

Here's more information from Mayo Clinic to learn more about the services they provide:
- Genetic Counseling https://www.mayoclinichealthsystem.org/services-and-treatments/medical-genetics

You might ask at the cancer center where your husband was treated if you could speak to a genetics counselor to talk about how to talk with your family. How are you doing?

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