Gleason 9 - Still looking for MO in Chicago area

All -

I have seen a lot of very helpful information on this site, so I'm hoping to get some encouragement and advice. My uncle is 66. He just received a Gleason score of 9. His PSA is 65. It has spread to his bones. His doctor gave him Firmagon injections earlier this week even before getting the biopsy results because of his certainty after seeing the PSA and bone scan. My uncle is scheduled to meet with the radiologist tomorrow. He will likely begin radiation tomorrow or Monday.

First, any hopeful stories you can share would be appreciated.

Second, any advice on what other questions to ask his urologist and his radiologist and any suggestions on where to go in Chicagoland for a second opinion on treatment or diagnosis options (if you think that is worthwhile) would also be much appreciated.

Thanks.

Dan

Changed your title again. Previous title "Questions to Ask and Second Opinions?" -- PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard.) : 4/29/2014 10:07:30 AM (GMT-6)

Dan
Sorry to hear the news but welcome to the forum.
G9 is not what you or your uncle want to hear but now that you have, you should know that there are many treatments available. These treatments are no joy ride but they keep us around.
The first 2 weeks are the worst. It does get better. There will be a new normal but it is manageable. There are many of us G9 guys of all ages and some of us still have young children in school and we just keep on keeping on!
Educate yourself about treatment decisions, ask questions, and don't ever be afraid to get 2nd or even 3rd opinions.
Hope the next couple of weeks go as smooth as possible. You've got the great guys and gals on this forum if you need us.

Dan,

There is a joke you've probably heard. It's about two men walking in the woods who are confronted by an angry bear. They turn to run but one guy notices that his companion has stopped to change his shoes. He is puzzled. He asks "What's with the running shoes? Even with those shoes you can't outrun that bear." The other man replies reasonably: "I don't have to outrun the bear, I only have to run faster than you do."

With a Gleason 9 with established metastases to the bone your uncle's oncologist has a race on his hands. No doubt about that. But the treatments for managing prostate cancer get better and better and your uncles cardiologist had better keep running. Sooner of later one of your uncle's doctors will lose a patient but it will be a while and it may not be his cancer doctor. Men do die of prostate cancer but the majority of men with prostate cancer die of something else, even those diagnosed with aggressive Gleason 9 disease.

Is your uncle related to you by blood? If he is, don't forget to mention that to your doctor next time you get a physical. A family history of prostate cancer pulls the recommended ages for various screening tests forward by about five years.

Thanks, fellas. I appreciate the additional feedback.

Right now, my uncle is scheduled to begin radiation next week. He's probably going to switch from Firmagon to Lupron for his next hormone therapy injection. The doctors are also considering chemotherapy.

His current team seems to follow the more traditional treatment approach rather than second-line hormone therapy. Anyone have any thoughts, experiences about either?

Thanks,

Dan

Thanks, Jim. He lives in the western suburbs of Chicago.

Don't know what kind of doc your uncle is going to, but he needs to see a "medical oncologist" who specializes in advanced prostate cancer. Gleason 9 is a different animal and not many doctors see a lot of it.

I have Gleason 9 and have taken lots of drugs and mine is currently "controlled". Two years ago a knucklehead non-prostate specialist oncologist told me I had two years to live. On Friday, my doc said it would take at least 2 years to determine whether the treatment worked. So I went from 2 years to live to "who knows?" just by finding the right doc.

Radiation is common in G9 cancer (I have had it), but it seems pretty fast to move to radiation in this case. I would definitely consult an oncologist before I did radiation therapy.

B

DanRF,

You said...
His current team seems to follow the more traditional treatment approach rather than second-line hormone therapy. Anyone have any thoughts, experiences about either?

The second-line drugs are seldom used until the first-line drugs have stopped working. If his PSA starts to go up on Lupron then his doctors may start talking about one of the second line drugs to get it headed back down. Hopefully by the time that happens he will have hooked up with a good medical oncologist.

Has his RO described the plan for his radiation? Radiation can't cure him at this point but it can delay further progression and can treat some of his symptoms.

I changed the title of your thread to get more attention to your question. Hopefully we can get you some recommendations.

bump.

Surely there are medical oncologists in the greater Chicago area. This page ...

www.chicagomag.com/Chicago-Magazine/January-2012/Top-Doctors-in-Chicago-Cancer-Specialists/

...from Chicago magazine lists three medical oncologists who do prostate cancer. They are...

ELLEN R. GAYNOR Breast, gastrointestinal, and prostate cancer. LOYOLA.

DAVID J. PEACE Prostate cancer; vaccine therapy; leukemia; lymphoma; immunotherapy. UIC

and

WALTER M. STADLER Bladder, kidney, prostate, and testicular cancer. CHICAGO

Anybody?

Hello Dan .......

   I am from the Chicago NW suburbs and have had some experience with three different oncologists - for prostate cancer. I'm also familiar with the article from "Chicago" magazine - and had wondered when reading it months ago, why some of the local doctors were not included. Another story - for maybe another time!!!

   My first treatments (before metastisis) was with the Chicago Prostate Cancer Center in Wesmont and with NW Community Hospital in Arlington Hts.! Since it was just over 10-years ago, the treatments were with radiation and then with a brachytherapy. See signature below!

   The PC returned and metastisized about 3-1/2 years ago. I did change Urologists twice during that timeframe - but, I have been with the same Oncologist for 3+years now. Again, see the signature below for treatments and timeframes.

   I would recommend Northwest Oncology and Hematology. They have three locations with the two major locations being in Rolling Meadows just off I-90 and in Elk Grove - adjacent to Alexian Bros. Hospital. My Oncologist has been Bruce Bank.

   I also went to another group of Cancer Doctors just off I-88 for a second opinion ... namely for Provenge when I was considering that as a treatment.

   Please get an oncologist involved very soon. As you can see, by my signature, I have been on Lupron for about three years and a total of 4-types of chemos/HT for 2+ years along with prednisone.

   I will be starting with a mentor from Imerman Angels this afternoon - and he is from Libertyville - so he may have more suggestions for doctors in the greater Chicago area.

Rob & Gizmo

 

Hello again ....

   After talking to my new mentor yesterday, I found that he is on his 5th different clinical trial - so he is far along in his treatments for PCa.

   Once he started his first clinical trial at the University of Chicago, he found an Oncologist there that he really likes and trusts.

   You're not talking about clinical trials, but the University of Chicago may very well be a very source - if needed - to keep in mind!

Peace and wellness

Rob & Gizmo

 

Dr. William Catalona, the "godfather" of PSA and prostate cancer, is located at Northwestern Memorial in Chicago. My urologist suggested a second opinion with him and we decided to travel to Chicago for treatment with Catalona. Check his website: http://www.drcatalona.com/