Replies to My mom had a rare cancer. I have the specifics written down, where I’m not sure……

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Breast Cancer | Last Active: Feb 8 12:25pm | Replies (13)

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@nemo1

My mom had a rare cancer. I have the specifics written down, where I’m not sure… I don’t know what type breast cancer my grandmother and g. Grandmother had, only that they had and survived it. No other cancers in the family that I am aware of. None in me. A surgeon a number of years ago suggested I go for the testing. He assumed I had insurance coverage for it. I never did.

I have a genetic liver disease. Alpha 1 anti-tripsin deficiency. So, I have a very fatty liver. I am to have MRI’s every year looking for liver cancer and any other problems, a special ultrasound routinely. I have a hepatologist who is following me. I’m due for the ultrasound and a follow up.
My blood tests are also done to monitor it.
So, with all that, I know if anything happens whatever therapy I would need would have to be cleared by the hepatologist. I’m concerned about the liver. Can’t live with cancer and cant live without the liver.

So, I’m sorry for writing so much about the liver, but it’s also a worry.

Oh yes. If I need anything done beyond biopsy it will be at main hospital. If it were like my moms cancer, I’d consider going to her doctor. He was wonderful.

I’m getting ahead of myself (as usual). I really appreciate your support and understanding.

Thanks for the valuable insights and suggestions.

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Replies to "My mom had a rare cancer. I have the specifics written down, where I’m not sure…..."

Dee | @danielad | Jan 27 2:17pm

Hi, @nemo1 - I am sure you feel overwhelmed by all that is going on right now. It's perfectly normal; anyone would. We got you!

Thanks for the information about your Alpha 1 anti-trypsin deficiency (AATD). I now fully understand your concerns! Can I ask your age, and if you ever thought of a liver transplant?

It's perfectly fine to plan your next steps, in the event your biopsy is positive for breast cancer. You are NOT getting ahead of yourself. It helps you to prepare mentally, and to some extent, it alleviates your anxiety.
We are all different in many respects, YOU need to be YOU. If planning makes you less anxious, do plan. Thinking about what you will do if you need to talk to a surgeon is fine. Knowing where you will go to find the best resources, is fine.

About Genetic Testing: You don't need to spend a lot of money, even without insurance. There are excellent companies (used by hospitals and surgeons) that offer genetic studies at very affordable costs.
These companies offer a Genetic Counselor to patients who do not have one. The counselor will interview the patient (by phone) and will recommend the appropriate series of tests. When the results are ready, a genetic counselor helps the patient understand the results.

Let me know if you want more information about Genetic Companies.

HUGS!

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