New to posting

[Surfside]

Dx December 2016, Gleason 8, PSA 7, extra capsulary extension. Age 52

PSA 9 pre RP on February 17, 2017 at Sloan. Pathology, Positive margin, negative lymph nodes and seminal vessels. PSA post RP 7. Waited 6weeks to get with MO.

Was told it was beyond the curable stage and that I should just start on hormone and hope it gets me a few years. Very impersonal it seemed like everyone gets treated the based on PSA levels regardless of age. We wanted to be more aggressive and wanted to do RT as well as hormone but they said that is not how they treat my stage.(3)

The following day went to see Dr. William Oh at Mt Sinai immediately like the personal attention we received from his nurse and NP. Dr. Oh. Discussed all the options including RT considering my age he thought it would be beneficial to try and get as much the PCA and felt I could handle the side effects. My wife is a Oncology Nurse with over 30 years of experience including clinical trials for 2 world renowned MDs. It was obvious to the both of us that we were now in the right place.

He order a axiom pet scan which came back with 1 small “flare up” on it otherwise everything was clear. Started Lupron May 31, 2017, with 1 month of Casodex. I was referred Dr. Richard Stock for RT. (Excellent RO, both him and his team of RT technicians). Started 39 treatments of RT on July 5.

[snoraste]

I had the same experience with MSK. Their oncology department is out of sync with their urology department. I changed my MO there last month. My issue was the same: Dx at 52 w/stage4, I needed a more aggressive upfront regiment. I discussed RP with my MO who rejected it. Then I spoke to a urologist there who said it's a very good idea. I ended up doing the RP two weeks ago.

I also met with dr.Oh for 2nd opinion on Metformin (again, my MO at MSK said no, but passed me on to dr.Oh who has done a lot of research in the field). No surprise he recommended I should take it. I also found him very warm and welcoming, and very interested in doing more aggressive therapy up front for younger/able patients.

My recommendation to you would be to get a urology consult at MSK asap. Or if you're thinking about RT, see the radiology people. Do not rely on MOs alone. They will push the "standard of care" onto you, and as good as it is as the foundation of your treatment, there are additional things you can do.

Take charge of your disease and build a medical team.

[Surfside in reply to snoraste]

My PSA has been undetectable since starting Lupron last may. Dr. Oh has started me on Xtandi along with the Lupron since November. I was fortunate that my insurance company agreed to pay for it since it is not yet standard of care. I will ask about the Metformin when I see him in 2 weeks thanks

[snoraste in reply to Surfside]

sorry - didn't read your initial post carefully enough about Dr.Oh being your MO. Please keep us posted how things are going with him. I'm meeting him again next month for a quick follow up. If I'm not pleased with the pace of progress at MSK, I may shift over to him.

[Surfside in reply to snoraste]

Highly recommend you consider him he is on the forefront of all the new trials.

[Dayatatime in reply to snoraste]

I have heard similar stories about The Mayo Clinic. I always recommend contacting the Urology Department and not Oncology. I actually contacted their Urology up front due to a post on a different forum that said exactly same about Mayo as you expressed about MSK.

You are correct about taking charge. With aggressive disease an aggressive doctor is needed.

Ron

[Surfside in reply to Dayatatime]

good luck to both of you and keep us posted

[JimVanHorn]

Hello Surfside, Welcome to our group. I was told I had five years to live in 2011. I had a total of 72 radiations, and started Lupron 3 month injections. Well, it has been 7 years and I'm still here!. My PSA has been 0.00 for all this time and my metastases and side effect are not noticeable. Keep in touch and get second opinions on everything.

[Surfside in reply to JimVanHorn]

Thanks

Hoping for the same results. I find exercising really helps eliminating the fatigue

[Surfside in reply to JimVanHorn]

Thanks will do

[gusgold]

Most of these Docs are the same....MO wants to treat with drugs....RO wants to treat with radiation....URO wants surgery......I have been to Mayo...the huge building are awesome and imagine the overhead....these Docs have to bring in money...the bottom line...you are a walking $

[Hidden in reply to gusgold]

To a hammer, everything looks like a nail.

[j-o-h-n]

SHOW ME THE MONEY!!!

Good Luck and Good Health.

j-o-h-n Thursday 05/03/2018 11:41 AM EDT

[spm58]

Hi surfside,

I had cores of 7-10. Did get lymph positive and rectum positive. They cleared rectum but still in small lymph. Psa was .5.i had radical prostatectomy and radiation. Waiting to check psa in June. I’ve been on casodex since diagnosed. Side effects are tender and enlarged breasts☹️.i feel great and haven’t had any tiredness. My urologist oncologist is very renowned at Methodist Houston. I also went to MD Anderson and they agreed with treatment. I guess we wait for June. I was diagnosed at 59. He says I should have 20 years - let’s pray so!

[Surfside]

I'll take that deal 20years, where do I sign?