My sister had colon cancer and possibly lynch syndrome

blueeyes220
blueeyes220 Member Posts: 5
in Colorectal Cancer #1
Does anyone know if there is a way to get funds to test my sister's tumor from her colon?. My sister was diagnosed with colon cancer in 2007 and it had spread to liver, lungs and lymph nodes. Also had a brother with colon cancer. My sister did not have genetic testing and neither did my brother. My sister died February 2 and my brother died in September 2008. I have two daughters and my oldest just had a daughter. I am very concerned about lynch syndrome. Since they did not have genetic testing I will have to pay for the testing out of my pocket. I have recently learned that lynch syndrome does not skip a generation. Very scary. I have had two colonoscopies and no polyps. All of my siblings have been tested. I was told need to test the tumor from person who had cancer.

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #2
    Testing
    You probably don't want to test yourself as the insurance companies could use that against you.

    Did someone save your sisters biopsy material?

    If so, you might be able to convince a local university to help?

    Your best bet is to assume you do and get tested frequently. Losing two siblings in three years has to be emotionally devastating, add in the same disease, well, I just don't know what to say.

    Maybe someone has a better answer...
  • kuastoi
    kuastoi Member Posts: 63
    #3
    Tough one..
    I know that the hospital that your siblings had their biopsies or surgical specimens performed at would have to keep samples on hand for at least 7 years for medical liability issues (in case someone sues). But, since they have both passed -you'd likely have to pay for the specimens to be tested. IN addition, you'd probably have to get their next of kin or previous medical power of attorney to make the request - not sure about that process. Maybe a request for their medical records to review would be a good place to start - testing on the specimens may have been done already without your siblings really being aware ( they might have forgotten or the tests are sometimes done routinely by pathologists once they hear the medical history of a young individual). A call to your sib's oncologists to discuss your situation might also provide more info and or another approach to take.

    Otherwise, frequent surveillance and a clear discussion or your situation with your doc (to ensure that the need for the surveillance is documented to clearly indicate the need for the frequent testing) may have to suffice. I wouldn't think of testing your kids until they are of age and able to discuss the ramifications of the results (i.e. insurance coverage)and can take part in the decision making.

    Good luck
    Tom
  • ketziah35
    ketziah35 Member Posts: 1,145
    #4
    Can your daughter get a
    Can your daughter get a colonoscopy? The insurance will apy for it earlier than 50 years old if you have a history of colon cancer. I would push for 10 years before the youngest person was diagnosed.

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