Cancer after transplant

kusa
kusa Member Posts: 5
edited March 2014 in Breast Cancer #1
i posted this also on the lung cancer site but decided to put it in this site as well. I'm worried about what we are going to find out tomorrow. If my Dad has a new cancer in his lung, I assume it's most likely a recurrence of the original cancer of the breast.
His mother died apparently of breast cancer in her early 70s but that was 1971 and I doubt that she sought any treatment until much too late and no regular screening then either.


Has anyone had experience with cancer following an organ transplant?
My Dad is 72. Diagnosed years ago, in his 40s I think it was, with a kidney disease he said they called some kind of nephritis. Controlled for a long time with low potassium diet. During that time he also developed type 2 diabetes. Eventually had to do dialysis but had a kidney transplant after not too long. That was over 10 years ago. About 4 1/2 years ago noticed nipple inverted. That turned out to be breast cancer so it was treated with surgery. Lymph nodes all negative so no radiation. Now suspected lung cancer. Shadow on chest xray not resolved with antibiotics, Chest CT showed opacities right upper lobe which Dr says could still be infection but possible tumor or continued infection due to a blockage caused by a tumor. Bronchoscopy done last Friday and he has Dr appointment tomorrow. He is in the Uk. I live in Texas but my sister is there with him. She said he was told chemoo not an option with breast cancer due to kidney transplant/immunosuppression. If this turns out to be what we are afraid of, is there any treatment available that is effective for someong with this history of transplant, breast cancer, diabetes.
Sorry to waffle on but I'm really worried. We just lost our Mom a year and a half ago unexpectedly and I am just not ready to lose my Dad too

Also,
My Ob/Gyn said I was more likely to develop breast cancer as Dad had it. He tod me to have dad's Dr do genetic test but I doubt the NHS in the UK would do it. I keep wondering if I should get tested but am concerned of the action insurance companies might take if they were to find out and the results show genetic link for breast cancer,

Comments

  • blazytracy
    blazytracy Member Posts: 157
    #2
    Transplant
    Hi Kusa,

    I had a kidney/pancreas transplant in April'05..Breast cancer Stage 3, diagnosed Sept.'09 along with multiple skin cancers along the way. I have had what my Dr's call aggressive treatment - 4 rounds of A/C and have had my 22/25 radiation today. I have been on immunosuppresant drugs since my transplant in '05. I also had Diabetes for 30 years before my pancreas transplant...My doctors have told me that since I have been on immunosuppressant drugs, my chances of getting cancer were maybe 1% stronger than normal people.

    I have had no adverse reactions with my kidney or pancreas. They are still doing just fine. I have my 5-year checkup coming up the first week in April and I am confident everything is ok.

    I am not sure if I answered your questions, but please email me if you have any more.

    Hang in there, Tracy
  • kusa
    kusa Member Posts: 5
    #3
    blazytracy said:

    Transplant
    Hi Kusa,

    I had a kidney/pancreas transplant in April'05..Breast cancer Stage 3, diagnosed Sept.'09 along with multiple skin cancers along the way. I have had what my Dr's call aggressive treatment - 4 rounds of A/C and have had my 22/25 radiation today. I have been on immunosuppresant drugs since my transplant in '05. I also had Diabetes for 30 years before my pancreas transplant...My doctors have told me that since I have been on immunosuppressant drugs, my chances of getting cancer were maybe 1% stronger than normal people.

    I have had no adverse reactions with my kidney or pancreas. They are still doing just fine. I have my 5-year checkup coming up the first week in April and I am confident everything is ok.

    I am not sure if I answered your questions, but please email me if you have any more.

    Hang in there, Tracy

    Cancer after transplant

    Thank you Tracy,

    That's a relief to hear you were able to tolerate treatment with an already complicated medical history. Now that you mention it, my dad did also have a skin cancer lesion that was removed. Wow, some people do seem to get more than their fair share of obstacles to deal with. My Dad's kidney transplant is more than 10 years old and has always been working fine with no rejection episodes. I am so worried about what tomorrow will find but this site has some very hopeful stories which gives alot of confidence.

    Wishing you well at your check up,
    K
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #4
    Genetic testing and insurance
    I'm in the USA. Just met with a genetic counselor today. I found that my insurance company can legally drop me if I test positive for BRCA1 or BRCA2 gene mutation. They would then consider my breast cancer (double mastectomy 1/25/2010) to have been a pre-existing condition.

    Our solution is to have my mother (who had breast cancer, too) get the Comprehensive test, which her Medicaid will pay for. If she tests positive, then I will get the Single Site test, which tests only for the specific mutation my mother has. It costs $450 and I will pay for it myself, bypassing the insurance company.

    The USA has a "Genetic Information Non-Discrimination Act," but it only covers people in group health insurance plans. I have an individual plan, so the law doesn't protect me. I saw a video that claimed there are no cases of discrimination based on genetic testing. I say "ha!" I know my American info may not help you directly, but I'm agreeing that you are right to be cautious about this.
  • kusa
    kusa Member Posts: 5
    #5
    Christine Louise said:

    Genetic testing and insurance
    I'm in the USA. Just met with a genetic counselor today. I found that my insurance company can legally drop me if I test positive for BRCA1 or BRCA2 gene mutation. They would then consider my breast cancer (double mastectomy 1/25/2010) to have been a pre-existing condition.

    Our solution is to have my mother (who had breast cancer, too) get the Comprehensive test, which her Medicaid will pay for. If she tests positive, then I will get the Single Site test, which tests only for the specific mutation my mother has. It costs $450 and I will pay for it myself, bypassing the insurance company.

    The USA has a "Genetic Information Non-Discrimination Act," but it only covers people in group health insurance plans. I have an individual plan, so the law doesn't protect me. I saw a video that claimed there are no cases of discrimination based on genetic testing. I say "ha!" I know my American info may not help you directly, but I'm agreeing that you are right to be cautious about this.

    genetic testing
    Thank you.
    I am actually in the usa, originally from the uk and my dad and sister are still there.
    My Ob/Gyn suggested my dad be tested but when I told him was in the uk he doubted the nhs would pay for it as he said it was about $3000. I have wondered about getting tested but self pay. I wonder if you do that, are you obligated to tell insurance the result if they ever ask , and can it be done anonymously and kept out of the medical record. I have group insurance through employer but you never know when things may change.
    Thanks again and I hope you are recovering fully,
    K
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #6
    kusa said:

    genetic testing
    Thank you.
    I am actually in the usa, originally from the uk and my dad and sister are still there.
    My Ob/Gyn suggested my dad be tested but when I told him was in the uk he doubted the nhs would pay for it as he said it was about $3000. I have wondered about getting tested but self pay. I wonder if you do that, are you obligated to tell insurance the result if they ever ask , and can it be done anonymously and kept out of the medical record. I have group insurance through employer but you never know when things may change.
    Thanks again and I hope you are recovering fully,
    K

    Legitimate worry
    Those are my worries, too. Will I be able to keep the insurance from finding out? Will I be committing fraud? How can I keep it out of the medical record if I were to get my ovaries and uterus removed based on a finding that I have the mutated genes? It seems that would require the doctors to "invent" a reason for removing them, thus involving them in the fraud. I do have a fibroid, but have for years, so that's considered a pre-existing condition, probably. I know many doctors do "code" medical orders and records in ways that circumvent insurance regulations when doing so helps the patient.

    My session with the genetic counselor yesterday cost $250 out of pocket. She felt that our plan will work, meaning that we can keep insurance from finding out. It seemed she has many resources -- she quickly located someone to do my mother's genetic test in her small town, for example. Can you meet with a genetic counselor?

    Thanks for your kind thoughts. I'm off to a stretching class, so, recovery continues!
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #7
    Christine Louise said:

    Genetic testing and insurance
    I'm in the USA. Just met with a genetic counselor today. I found that my insurance company can legally drop me if I test positive for BRCA1 or BRCA2 gene mutation. They would then consider my breast cancer (double mastectomy 1/25/2010) to have been a pre-existing condition.

    Our solution is to have my mother (who had breast cancer, too) get the Comprehensive test, which her Medicaid will pay for. If she tests positive, then I will get the Single Site test, which tests only for the specific mutation my mother has. It costs $450 and I will pay for it myself, bypassing the insurance company.

    The USA has a "Genetic Information Non-Discrimination Act," but it only covers people in group health insurance plans. I have an individual plan, so the law doesn't protect me. I saw a video that claimed there are no cases of discrimination based on genetic testing. I say "ha!" I know my American info may not help you directly, but I'm agreeing that you are right to be cautious about this.

    Just wishing you the best of
    Just wishing you the best of luck with your check up! Post and keep us updated!
  • carkris
    carkris Member Posts: 4,553 Member
    #8
    DianeBC said:

    Just wishing you the best of
    Just wishing you the best of luck with your check up! Post and keep us updated!

    I had the testing years ago
    I had the testing years ago never thought it would be a preexisting illness. I did it for my family so they would not be discriminated against. I was negative. but why i got two different kinds, ductal in one, lobular inthe other, makes me wonder if I have some gene undiscovered.
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #9
    carkris said:

    I had the testing years ago
    I had the testing years ago never thought it would be a preexisting illness. I did it for my family so they would not be discriminated against. I was negative. but why i got two different kinds, ductal in one, lobular inthe other, makes me wonder if I have some gene undiscovered.

    There are gene mutations
    There are gene mutations besides the most common ones the tests cover, BRCA 1 and BRCA2. You may indeed have one of these "Uncertain Variants," carkris. Or, your breast cancers may not be gene-based, just random. Even in my family with women of at least three generations having breast cancer, there's still only a 33% chance that my cancer is genetic, I'm told. Amazing!

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