Biopsy Results In

It is hard to believe my father went to the ER and 2 weeks later we are here...

I am looking for words of encouragement to share with him and also any suggestions on NEXT STEPS and general opinions about treatments.

To this point I have researched and prepared for the diagnosis. I’ve done very little research on treatment options. So here is what we are working with:

Age 69
Frequent night urination; symptom that led to ER visit was inability to urinate
DRE firm, irregular, bilateral volume
PSA 144
21 tissue samples taken, all 21 positive for cancer with volumes ranging from 70 – 100%
Gleason score of 4 + 3 = 7

Next steps per doctor (urologist): Start Firmagon immediately; get bone scan and MRI of Pelvic area. The doctor said he wouldn’t jump to removal of prostate likely hormone therapy + radiation but won’t confirm treatment until bone scan

My next steps: wait for bone scan results and take PSA, Biopsy, and Bone Scan and send to Dr. Dattoli (Sarasota, Fl). He is world renowned and specialized in prostate and is a radiation oncologist. Then get biopsy slides and send to Dr. Epstein for another read.

What other third opinions do I get? Where do I go?

The urologist made it sound like he would NOT recommend prostate removal.

Holding on to hope that we still have many years of life and memories together with my Dad!

Here is some positive news for you and your father.

I have a cousin who was Gleason 10, PSA = 72, very fast doubling time (< 10 weeks) and who has undergone all of the treatments (chemo, RP, hormone, immunology, blood transfusions, etc.) and is still around 9 years after all of this and doing fairly well, with no discernible pain at this point. HIs PSA is now around 3.3

You need to understand that this disease, even when considered incurable (and your father may very well be curable) is still treatable, and even under the worst of circumstances, takes time to kill its victims.

I personally am now stage T4, have a cancer doubling time of less than 7 weeks, but I was diagnosed with the incurable form of this disease over 4 years ago, and my prognosis is still for another 8-10 years of life. And so far, I have suffered no pain at all from the cancer during this entire time.

Don't let your father panic. It is natural, but if you understand the disease, and the many possible treatments, and do your research, there is a long life ahead for him.

I would start with downloading this report from Harvard on prostate diseases. It costs $25 to download, but it has about 130 pages, and it is updated every single year with the latest research on new possible therapies and treatments.

www.health.harvard.edu/mens-health/2017-annual-report-on-prostate-diseases

If you need really advance information, go to the UCLA website, and the PCRI website (prostate cancer research institute):

Also, if you father does develop positive margins (meaning the cancer has gotten out of his prostate into other areas), one person who knows the most about choline C-11 imaging is Eugene Kwon at the Mayo Clinic and he has videos on youtube. The most advanced imager is now the 68GA one (located at about 5 places around the country), but it is not available unless you are very far along like me at this point--but I expect it to get approved by the FDA by this time next year.

As far as getting second or third opinions, you can't do better than dealing with the experts. It kind of depends upon where you live. The best cancer hospitals around the country are at the Mayo Clinic(Rochester, Minnesota; Phoenix, Arizona; and Jacksonville, Florida), MD-Anderson down in Houston, the Cleveland Clinic (in Cleveland), Massachusetts General (Boston) and Sloan Kettering in New York City. But there are some local experts also. For example, my oncologist is Richard Lam at the Prostate Cancer Research Institute in the Los Angeles area, and my chemo is about to be handled by Sandra Srinivas at Stanford Medical in Palo Alto (since I live in northern California).

TinkerbellRM22-

A cancer diagnosis is always scary, but even more so when there is a high risk (so far) diagnosis of the kind your father got. A lot will depend on the bone scan. If his elevated PSA was due to urinary obstruction and there are no distant mets, then he is curable. If there are distant mets, it won't be curable, but it is a disease that can be successfully managed for a long time.

If there are no distant mets, the most curative option is a combination of some kind of brachytherapy with external beam therapy and hormone therapy for a period before afterwards. John Sylvester in Lakewood Ranch, FL is one of the world's foremost experts in low dose rate brachytherapy (seeds) and I'm sure his office can handle the 25-treatment IMRT part of the therapy as well. There may be a specialist in high dose rate brachytherapy in Florida as well, but I am not familiar with any. Dattoli does not offer either of these - he only does external beam, which you can get almost anywhere. The toxicity is lower, but so are the oncological results:

Brachy Boost: The gold standard for progression-free survival of high risk prostate cancer

If it turns out that there are distant metastases, there are many good options for treatment that have come to light very recently. You can read about them here:

Newly diagnosed, metastatic (M1), but still hormone sensitive - best options

The bone scan/CT results will also dictate which kind of doctor he should see next. If there is no evidence of distant spread, his next visit should be with a "radiation oncologist (RO)" like Sylvester. If there are distant metastases, he should be under the care of a "medical oncologist (MO)." The best ones in Florida are at the top tertiary care centers there: Sylvester (Miami), Moffitt, and UF Shands.

Welcome to HW.

You've gotten great info so far.

It's scary to get numbers like that, but there is every reason to hope for a good outcome. We have guys here with worse numbers who've been here for years.

You have a great doctor lined up there and sounds like a good plan.

Hang in there and ask all the questions you have, we're here most days,
Andrew