A few years ago, I had my doc ask for a second opinion from a second pathologist, who interpreted lab results differently than what the original lab report read. This is a big deal when you are talking about cancer. The words “second opinion” are used during the first weeks or months of cancer when we are setting up shop with our docs. But you can get a second opinion anytime you want (or anytime your insurance will cover it!)
Check out this short video. I was so drawn in, I felt like I was watching a full length documentary. I wanted to stay glued to the screen for an hour with a bucket of popcorn.
The gist is that Myriad, company in Salt Lake City, owns a patent on a few of your genes (BRCA1 and BRCA2) that show your likelihood of developing hereditary breast and ovarian cancer. What’s the big deal? They are the only company that has the rights to do research, screening, or testing of these genes, as well as developing pharmaceuticals related to the genes. You can’t get a second opinion from another lab to make sure the test is accurate or interpreted correctly. It also means they are the only game around so if you cannot afford 3,000 buck for their test you are SOL.
This is just wrong. Hats off to Breast Cancer Action for engaging the ACLU in a lawsuit to challenge the patent that the Federal Government gave to Myriad. I fully support their efforts and hope that they kick some ass.
Have you ever sought a second opinion beyond your initial diagnosis and choice in doctors? Have you done or would you do genetic testing? Would you want these tests performed by multiple labs to verify accuracy? What do you think of the ACLU’s suit?
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May 28th, 2009 at 4:40 AM
I feel that second opinions are an absolute must! I got a 2nd and 3rd opinion after my initial diagnosis as I was trying to make decisions about my surgery and treatment. My first doc said bilateral mastectomy or you will die, and then the other 2 docs both said lumpectomy. A huge difference. And although I opted for a single mastectomy it was still crucial to get those other opinions. As a breast cancer survivor I have not as yet had the genetic testing done. My father died last summer from pancreatic cancer which was a red flag for me to get tested as there are studies that have linked breast and pancreatic cancer genetically according to my oncologist at Sloan. I choose to not get the testing done. Because I know that I will not do what is recommended if I had it…which is to remove my other breast and my ovaries just in case. Some people think I am crazy but it is my personal choice. I look at it more holistically. I also do not have a strong history of breast cancer either so I have a less likelihood that I would test positive. As for this particular case though I agree with you Kairol. I think this is nuts that you can only have the testing with Myriad! People should absolutely be able to get a second or third test done to be sure. Women are using this information to decide on treatment and sometimes prophylactic treatment. I too hope they kick some ass!!
May 28th, 2009 at 12:31 PM
As you know, I was considering a second opinion, but only because my surgeon did not supply me with answers to my qualms and I felt I wasn’t being respected. Once I was a bit more aggressive with them, I got the response I needed and that was that.
May 28th, 2009 at 12:33 PM
Oh, and this Myriad thing is bull. All medical companies should have access to this if it’s a potential life-saver.
May 28th, 2009 at 12:34 PM
I had abnormal Paps since I started going to the ob/gyn, but my doctor knew my history and I never tested positive for HPV, so we weren’t too worried. Finally, after a continuous string of abnormals, we did a colposcopy, and the results came back LSIL (low-grade squamous intraepithelial lesions). I had a nagging feeling something wasn’t right, and went to Memorial Sloan-Kettering for a second opinion, and brought the original slides. I was 24 at the time and everyone at my work thought I was being ridiculous and a hypochondriac when I insisted on a second opinion. Imagine my surprise when I got a phone call a week later from MSKCC saying that Quest had apparently read the slides WRONG and it was actually high-grade lesions, and we had to do a LEEP as soon as possible because we didn’t know how far it had spread or if it was in the endocervical canal, etc. It makes it very hard for me to trust my Pap results, unless I go to MSKCC (which after a year, wasn’t really an option). My gyn-onc uses LabCorp, so I feel a little better, but still don’t trust a “normal” Pap result, which is sad, because I’m only 28.
May 28th, 2009 at 12:55 PM
When I was diagnosed with a brain tumor I did research and I found that diagnosing BTs is “more of an art then a science.” So I got 3 opinions about the pathology. Three may seem like a lot, but it took that many to get two hospitals to agree on one type of tumor. If I did not get that new diagnosis I would have been given chemo, which my tumor type does not respond to. Everyone should question doctors and labs- after all they are only human.