Genetic Counseling

22 Mar

Hello All,

Today I went to Hoag’s Cancer Center for a genetic counseling appointment. My parents came with me. They are amazing.

This session was with a genetic counselor who went over my family history to assess whether the breast cancer I had (I have to always refer to it in the past tense now) was hereditary, familial or what they call “sporadic”. Most cancer is thought to be sporadic, meaning that the cause is unknown. Familial cancers are those that seem to be more common in a family (a certain number of family members that have had cancer, once that threshold number is met, the cancer is considered “familial”), but, do not have a known genetic link. Roughly 90% of cancers are considered sporadic. So hereditary and familial cancers make up the remaining 10%, with hereditary cancer only about 2% (if I remember correctly what she told me today).

In general, the likelihood of having a hereditary cancer is very low. But, certain indicators make it more likely that there is genetic link. One of those indicators is a diagnosis before the age of 45.

There is a blood test to determine whether it was hereditary (this is the test for the BRCA 1 or BRCA 2 gene associated with hereditary breast cancer and ovarian cancer). The cost of this test is between three and four thousand dollars. And, today I found out that my insurance denied it – even though the national guidelines indicate that I should have the test since I was diagnosed with cancer under the age of 45. In addition, the family history of breast cancer and prostate cancer (both of which often have a hormonal component) indicate that I should have this test (according to the national guidelines). I had expected to have the blood work done today. But, as I said, my insurance provider denied it.

The odds that the cancer was from a genetic cause, in my case, is statistically unlikely. However, knowing whether it was inherited or not is very important – not just for my own treatment. For example, women who test positive for braca 1 or 2 have are more likely to develop ovarian cancer. I need to know this in order to best adapt my treatment to prevent a recurrence, and to prevent ovarian cancer. I also want to and need to know for the sake of my family.

The genetic counselor was so good and provided excellent information. She also said that it is more likely that based upon my family history, it is more probable that the cancer was not hereditary. This is good news. But, I need it confirmed.

The genetic counselor told me that I should file a grievance with my insurance provider. She thinks that it should be covered. She wrote a “medical necessity letter” so that I can use this as part of my appeal/grievance. By the time I got home from our meeting, she had already sent the letter to me via email. She made a strong case for coverage I think. It was so nice to get the letter from her so fast, very impressive and very appreciated.

So tomorrow I will get started on the grievance/appeal process. Wish me luck with that.

Please keep the prayers coming my way, I greatly appreciate it.

Much love,

Lisa

P.S. New word – competitant – combination of competitive and contestant . . . this word is one of many that I have unintentionally invented as of late. I will be speaking and then I think of which word I want to use and sometimes combine a few words into one – not intended though. Fun times 🙂 I am under a lot of stress right now – I think that has something to do with my “creating new words”. And, the chemotherapy clouds your brain a bit too. It is as though wires are crossed that should not be. I am told it is temporary. I believe it is as I have periods of time where this happens and periods of time where it does not. The common denominator is stress or recent treatment.

2 Responses to “Genetic Counseling”

  1. Sandy March 23, 2010 at 7:50 AM #

    I’m so mad at your insurance company, I could spit. If you need anything (docs filed with the court, kneecaps broken) just let me know!

    Love,
    Sandy

  2. cancerfree2b March 23, 2010 at 5:39 PM #

    Thank you Sandy 🙂

    So Super Mex it is?

    I see there is another post, I am on my way to it now.

    Love,
    Lisa

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