Hi Cas1. Thanks for sharing this!! It's difficult for me to understand and comprehend but perhaps it's something I can read more about. Can we count on our doctors (mine are at Northwestern in Chicago) to be on the cutting edge of all this and offering their best?? Thanks for all your questions and responses.
Lung Cancer Questions
New platform for tumor boards
Asked by CAS1 on Thursday, May 16, 2013
New platform for tumor boards
The University of Chicago has added a new cancer board to review patient cases. It will now rely upon genomic or mutation profile to discuss and determine treatment options. Again this is why its so important to know your cancers genomic profile. Not only does the primary cancer have a signature mutation profile but any mets might have a different profile so its important to ask for another mutation test if you have a cancer return.
For instance in my case I had more mutation testing than most people because I had two profiles done. The first was a hand full of most common tested. No positive mutations found.
The second sequence ( 220) found an Onco gene ( Driver) EGFR mutation and a tumor suppressor mutation Brg1 ( switched off tumor control) gene. This is why I have cancer.
Both have drugs available and more in the pipeline. Both of these mutation are found in many different cancers. Just so happens it became Lung cancer
Should my cancer return we will test that cancer again.
5 Answers from the Community
Yes, its very very important that you learn about mutations. And more importantly that you learn about your mutations. But the answer is "NO" to assuming that your Dr's know about or apply mutation testing to you and your case. Even though it is cutting edge in ALL cancers.
I was mis diagnosed at Northwestern and my LC was overlooked. Between my husband and I we were into my Dr. every few months because I have a family history of cancer..When he saw me in August 2011 I comaplained of symptoms and he put me on hormone replacemnt saying it was menopause. At my 1 year check up Feb. 2012 he complemented me for being up to date on all my cancer screenings.I said I had a small cough for a few weeks thought it was alergies. I was Dx and told I had few options at Northwestern. They didn't mention Mutation testing.
I prayed to my sister and my parents and God to help me.. A voice said look on line for Dr's which lead me to the Lung cancer alliance..They gave me two numbers. The first didn't work because I was destined for Dr. Ravi Salgia at University of Chicago which is NCI designated as 1# in Chicago. People come from all over the world to Dr. Salgia. They are fabulous.
He is World renowed. And I had surgery at Rush Dr. Liptay because he is also the "BEST" lung cancer surgeon in the midwest, and one of the best in the country. They worked together on my case. Thats how good they are. I think they have saved my life.
So then after my Pet scan at Northwestern showed cancer it took the thorasic surgeon almost a month to dx me as lung cancer? In the Oncology world this is obscene when it comes to LC.. I had to be put under twice and biopsied through my neck twice and then my entire neck blew up from infection and I had to hound his office for the results. Then he told my husband to tell me that I had Lung cancer. Again, outrageous behavior. He was recommended to me by my Internal medicine Dr. I had over the years always taught my family and friends to always go to the big name hospitals and I had recommended Northwestern to many many people prior to my experience.
But I must be very frank and honest with you. Since my DX I have met 4 people with cancer who have been misdiagnosed at Northwestern and my ex husband's wife died of stomach cancer at NW.. She has started out with an ulcer and begged to be scoped for one year and they wouldn't do it because they said she was so young and would not have cancer. Had her stomach removed and died a few years later. I just learned these details a few months ago when I spoke to my ex after many many years. They had a 4 year old adopted daughter who my ex is raising by himself. Tragic story and it just broke my heart to hear of it.
On the other hand none of these people had Breast Cancer so I cannot even suggest that your care might not be excellent because so much depends upon the expertise of the Dr's and the advances in the cancer's treatment and understanding itself. That is huge.
But you need to stay informed and vigilant.
Kathy, sorry I was confused about your cancer. And none of the people I met had ovarian cancer either. So I cannot speak about ovarian either as I don't know much about it.
But what I do know is personalized medicine is the direction at the big name cancer centers like University of Chicago, MSK, Dana Farber etc. I just did a three part webinar series on the direction of personalized medicine.