Worried and looking for new doctor

[Judymin]

My husband was diagnosed in 2011 with gleason 9 psa 22, 11 of 12 cores positive. This was when he was 1 month before turning 53!!!. When he was 50 he had psa, was 5 but he never followed up and is in total depression over that. Meanwhile when he was 45 saw urologist even with 2 uncles with pca, he never did psa test. I suspect he has had it since then. As to treatment, we were seeing Snuffy Myers who has retired, he referred us to Dr. Ferrari at Rutgers Institute in NJ, she now left as well. The new doctor is nice but does not appear very aggressive. We also saw Dr. Kwon at Mayo for choline-11 scan, which showed lymph involvement but small. He has been on Zytiga for 4 years with great result but psa now doubling every 3 months, now at 6.4. I heard about a Dr. Drake at Columbia in NYC, anyone been to him? I liked Snuffy's thinking out of the box and being aggressive. He is waiting for bone scan next week, CT showed one 10 mm node. Obviously it is growing and I am terrified as to the future.

Thanks judym

[JoeBo]

Try Prostate Oncology Specialist in Marina del Rey

[snoraste]

I don't know dr. Drake. I consulted at mount Sinai, NY Presbyterian (Cornell), Dana Farber and now at MSK. My current MO at MSK does not take new patients, so of the three remaining, I found Dr. Ho at mount sinai the most aggressive (and optimistic) of the three remaining centers. I would not recommend generic MSK MOs. They are very much by the book.

[Bloomington]

Recommend Dr. Karen Autio, MO, also Dr. Michael Zelefski for radiation, both at MSK.

[homer13]

Snuffy sent me to Prostate Oncologist in Marina del Rey. Somewhat similar in their approach.

[Rexwaterbury]

I was a patient of Snuffy as well. He sent me to Dr. Drake. He has pretty much kept the same regimen at Snuffy. However my PSA is rising again. I see him again in two months, and at that time he may start chemo or a clinical trial with Opdivo and ADT. He is very knowledgeable and has a great bedside manner. Snuffy told me that he was a younger and smarter version of himself.

[Judymin in reply to Rexwaterbury]

Thanks I think I may call to set up appt with Dr. Drake. We are in NJ so train ride away. I am just not happy with current replacement for Dr. Ferrari, he is very nice but not aggressive, we need someone to think out of the box. My husbands psa now at 6.4, new test in 2 weeks, praying not higher, but know it will be. Also pending is bone scan, very scary. How long have you been fighting pca?

[Rexwaterbury]

Diagnosed 9 years ago. Had surgery then radiation then Snuffy. Now relying on Dr Drake.

[j-o-h-n]

to Judymin:

If you're in NJ I would recommend my MO, Dr. Michael Morris at MSKcc 1275 York Ave, Kimmel center, Off of First ave. NYC Phone: - [phone]. You can google him and see him in some dated videos from MSKcc. I don't know if he's taking on new patients.

BTW your husband is a typical male... when a doctor tells a guy he's ok then it's "Look out I'm outta here". When a doctor tells a woman she's ok it's "What do you mean by ok doctor?"

Good Luck and Good Health.

j-o-h-n Thursday 09/13/2018 5:40 PM EDT

[charlesmeyers1964]

your husband has a psa of 6.4 if thats true why are u worrying at all. most males psa normal is from 0-4.0. when mine was 5.7 i went in and had bioscopy found gleason of 9 and the other number of 7. had a lupron/eliguard shot until it started to go up to psa 8. didn't want the surgery so got radiation and it was down for about 3 yrs. then started pills finally zytiga. they have a new treatment started in 2006. read it lear it, PROVENGE. i had my cancer for now 10 years with a psa of 28. i've talked to men with 620,1000,2000 the last 2 numbers are dieing don't get scared just read on google ask tons of questions and he will be all right. charlie

[anthonyq]

Hi Charlesmeyers1964, it sounds like you and your husband have been executing a wonderful game plan for 10 years. Just curious about what type of radiation your husband had and what were the side effects? How down did the PSA score went before going up to 28?

[Mormon1]

4 years on zytiga. Thats wonderful. I have been on Zytiga for 18 months and psa has long been and still is undetectable. However, my RBC and hemoglobin has declined .06 per month for last 90 days. My cancer doc thinks its the zytiga and threatened to take me off zytiga if hemoglobin continues to fall. Now 9.6. My bloodwork was always almost perfect. Iron Ferritin Bun and alk Phos and b12 are still perfect. Anyone hear of this? I am really scared. I am 68.