Rare lung cancer fetal adenocarcinoma mutation

I’m very sorry for your loss, this disease is so devastating to those who have been affected by it. I can understand how you are feeling right now about telling your loved ones about the nature of this disease and the possibility that it can affect their lives, this is truly a sad burden for you. It’s in your best interest and your family that you should talk to them about this, they would definitely want to know about this and what they can possibly do, I don’t think you would want to carry this burden on your own and they would most likely be devastated if you withheld it from them. I sincerely sympathize with your grief and one can only hope and pray that new and better treatments will become available, there are so many changes going on in this world, the research and discoveries are never ending, one day they will have newer things that will improve the outcome for your family, God bless you always.

I would calmly tell your children and encourage them to get tested soon. Since your husband’s TP53 mutation was inherited, each child has a 50% chance of having inherited it. If a child tests negative for the family’s TP53 mutation, they cannot pass it on to their children, so their children would not need to be tested for that mutation.
Please don’t blame yourself. Years ago, genetic testing for hereditary cancer syndromes wasn’t nearly as common or as accessible as it is today. Medical knowledge has advanced tremendously, and knowing about an inherited mutation now gives your family the opportunity to take proactive steps with screening and early detection.
I’m wishing you and your family all the best as you navigate this.

I am so sorry your husband passed due to this mutation, I also have learned I have this rare pathogenic TP53 gene with 90% risk of various cancers. It is called Li Fraumeni syndrome. I have had three cancers since 2016, all small and treatable. But yearly tests are advised. A letter from my geneticist to family recommends testing for my adult daughter and my siblings, all with 50% risk. And if they have it, same 90% cancer risk and 50% risk for their children. And so on. I gave all of them the letter which elicited a strong reaction from my daughter. I have done my duty and that is all I can do. It may be beneficial for you to tell them so they can get tested. Is there a letter or some evidence of your husband having had this gene. Treat yourself tenderly. I am so sorry.

In reply to lynnn, yes I have the pathology report stating metastasis to brain spleen liver bones from fetal adenocarcinoma tp53, lfs (for short). My worry is that if I tell my family they will worry about developing this dreadful form of cancer for the rest of their lives and my daughter has already said if she had her choice she would rather not know ( she doesn't know of the mutation that her father had) my son and daughter and adult grandchildren saw the rapid progression and deterioration of their father ( grandfather) . Thank you for your thoughts
Gloria

Thank you all for your thoughts and advice, it is hard to know what is the best thing to do is. In my own life I have always been worried that I'd develop ovarian cancer which my mother died from at age 36..I was 6 years old . I understand a life long worry and I am reluctant to put this on my family. I didnt develop ovarian cancer but I did get DIPNECH which led to lung cancer and I've had 2 lobectomys. Gloria

@gprior Gloria, it truly is a difficult decision. I don’t know what my daughter will do as she won’t discuss it.
And my brother doesn’t want to know. But that puts one in a potential risky situation. The benefit of knowing is that the suggested tests can be done early to hopefully catch anything early. Did your husband have a family member with known cancer? My mom had two, uterine and colon. I don’t know anything about her family, but it had to have appeared somewhere along her line. And with this damaged gene, various cancers are possible. So maybe your husband’s particular cancer wouldn’t be passed although a different and treatable one could. I believe it would be beneficial to know. As well as the pathology report, do you also have a genetic report with details of family risk? I think that would give you particulars for your family. To watch deterioration of a loved one is excrutiating. I am so sad for you.

@lynnn yes his brother passed away at age 44 from colon and liver cancer, his mother also passed from colon cancer and his sister survived colon cancer as it was caught early, so it is in the family, my husband type was highly likely to come from one of his parents...hence " fetal" adenocarcinoma. You are right it is heartbreaking to see one you love suffer so much. I just don't want to cause my family any more worry , especially the fear for their whole life Gloria

@gprior Gloria, I am so sorry you have been through all this. That you were 6 when you lost your mom is heartbreaking beyond understanding. And your husband had a serious family history. You deserve some peaceful days ahead. Lynn

Lynn thank you so much for your understanding. I still don't know whether to tell my family of my husband mutation, I think I'll have to wait awhile to decide Gloria

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.