I have a rare form of lymphoma -- Mantle Cell Lymphoma.
My onc at MDA is one of the tops in the world for my version of lymphoma. He's Chinese and absolutely brilliant. He immigrated here many years ago, worked at NIH as both a researcher and clinician for years and then moved to MDA.
It is not only the docs at MDA, but the whole concept of cancer care. The very first step in cancer care is an accurate, detailed, and thorough diagnosis. As you probably know, each cancer is different, and being able to zero in with world-class diagnostics is critically important. And, if your version of cancer falls outside the "cookie cutter" treatment, there is another world-class center, the research department, just down the hall that the doctors can visit for the best answers.
My first visit there years ago just blew me away after dealing with a local regional cancer center. By the way, my local onc center was good -- it was just not in the same league. I had the thought from that experience that cancer at MDA was like the common cold in the rest of the world.
I have always made it a point to reach out to other patients when I visit. I normally stay in the Rotary House, where it is easy to strike up a discussion with others. The stories they have to tell are incredible. After talking with many, many patients, I am of the absolute opinion that a diagnosis of cancer is NOT a death sentence (although many do die), but that the quality of care there is orders of magnitude beyond a local onc center.
I get it that not everyone can go to MDA for treatment. However, getting a second opinion and having them direct your treatment locally can dramatically improve your chances of beating the disease.
By the way, what is your cancer?
I was diagnosed with metastatic prostate cancer 9½ years ago. 8 bone mets even though my PSA was about 9.4 at diagnosis. 5-year survival rates was 54%.
I got a TIA probably last July. I got VERY dizzy reffing volleyball in September I had to cancel the rest of my season.
At the time, I had been getting Lupron injections every three months and also taking 160 mg of Xtandi per day. Last September, we cut down the Xtandi to 120 mg per day, and discontinue the Lupron until my PSA and testosterone started to go up. After nine months, my PSA is still undetectable, and my testosterone is still very low.
My oncologist told me yesterday that my PSA might not go up for a year, maybe longer. When I asked him how many of his patients pass away every month, he said between 4-6 on average.
He also said IF Xtandi or the Xtandi/Lupron combo ever stops working, there are 8 to 9 other therapies to go to. He also said it is likely I will never need another treatment based on my response so far. I’ll be 71 in April, so I will almost surely died of something else.
You are absolutely right about MD Anderson. Cancers that are hardly ever treated at any regional cancer center are common at MDA.
First time my wife and I walked in to MDA, we had a strange feeling because it really hits you that your cancer is real. Also had a sense of awe at the place.
Met with my urologist, decided to meet with the radiation oncologist and a GU oncologist. The GU oncologist said I’d have 3-5 years if I did his clinical trial. I declined. Then met with my urologist and he told me my PSA wasn’t very high and I’d be around for a long time. That was such a relief, my wife and I went out for dinner to celebrate.
I tell anyone I know who has gotten cancer to at least get a consult at MDA if for no other reason than to get confirmation for their local diagnosis and treatment plan.