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Active surveillance for 8 years, now have gleason 3+4

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Posted 3/13/2022 5:05 PM (GMT 0)

Hello, JRK -

Stay with us here --- great group --- support --- experiences shared --- CAMARADERIE & fellowship!

I like your proactive approach --- Johns Hopkins for assessment ---- M.D. Anderson for consultation.

I'm in the Midwest, so Mayo Clinic was an obvious choice for me.

You mentioned you live in Texas, so M.D. Anderson is a great choice for you!

Keep us posted --- we all learn from each other --- each experience shared helps the next fellow, down the road!

Handshake of welcome ~~~ and my best wishes ~~~

CYCLONE ~ # Iowa State University
Posted 3/16/2022 4:14 PM (GMT 0)
Thanks fellas! One final question (for now) before I embark on this. Are there prostate cancer doctors out there who are not radiologists or surgeons, have no dog in the hunt, and can guide you as to which is best? Talking to one on each side and deciding which one to trust seems like a less than ideal way to do it.
Posted 3/16/2022 4:34 PM (GMT 0)

JRK said...
Thanks fellas! One final question (for now) before I embark on this. Are there prostate cancer doctors out there who are not radiologists or surgeons, have no dog in the hunt, and can guide you as to which is best? Talking to one on each side and deciding which one to trust seems like a less than ideal way to do it.

Yes, they're out there. My urologist, who has a focus on urologic cancers, was quick to point out that if you talk with a surgeon they will want to sell you on surgery, and if you talk with a RO they will try to sell you on radiation. YMMV.
Posted 3/16/2022 4:39 PM (GMT 0)
Thanks, AZRoad. It was a similar comment you made below that reminded me to ask that question.
Posted 3/16/2022 4:43 PM (GMT 0)

JRK said...
Thanks fellas! One final question (for now) before I embark on this. Are there prostate cancer doctors out there who are not radiologists or surgeons, have no dog in the hunt, and can guide you as to which is best? Talking to one on each side and deciding which one to trust seems like a less than ideal way to do it.

Rarely. After speaking with several urologists, all of whom tried to wheel me into surgery, I did find one who provided me with a range of options. After 14 years on this web site I think this is the exception rather than the rule. In other words, most of us have to do our own research, talk with various specialists then make our own educated decision. One perspective that I value is that of Dr. Scholz. Did you watch the video in my previous post on this thread? He has many others in the same vein.

Jim
Posted 3/16/2022 6:50 PM (GMT 0)

JRK said...
Thanks fellas! One final question (for now) before I embark on this. Are there prostate cancer doctors out there who are not radiologists or surgeons, have no dog in the hunt, and can guide you as to which is best? Talking to one on each side and deciding which one to trust seems like a less than ideal way to do it.

There are some (prostate cancer) centers (in the US) that favor a team approach.
The learned among us will come up with some names.
Posted 3/16/2022 11:30 PM (GMT 0)

Sr Sailor said...

There are some (prostate cancer) centers (in the US) that favor a team approach.
The learned among us will come up with some names.

JRK, I don't know if you told us where you're located, A few places that I've heard of that do a 'team approach' to treatment--you meet the various specialists at the same place over the course of a day, and they come up with an approach for your case. Mayo, Cleveland Clinic are two of the biggest names. Many of the major University centers operate similarly.
Posted 3/17/2022 3:44 AM (GMT 0)

JRK said...
...I didn't realize that radiation was something that I could consider at my age, but I will look into it. I dread that surgery but will do it if need be...

Trust me, you don't need the surgery. Yes. Look into HDR brachytherapy as an option. I had the treatment, and am so glad I did. For more information, follow these two links:

https://www.youtube.com/watch?v=la3lg3fpayg

https://www.youtube.com/watch?v=as9cahezqso
Posted 3/18/2022 6:55 PM (GMT 0)
Halbert,

I'm in Dallas. So I'm going to check out MD Anderson in Houston, which I think follows a team approach.
Posted 3/18/2022 11:12 PM (GMT 0)
Excellent!
Posted 3/22/2022 3:12 PM (GMT 0)
I'm current on AS at Emory in Atlanta. They practice the multidisciplinary approach and I've seen both a urologist, Dr. Martin Sanda, as well as a radiologist both individually and in a group setting. I've never felt pressure to do one way or another.
Posted 3/24/2022 6:28 PM (GMT 0)
Following up on my earlier post, met with the Uro. Posting this here for the next guy…

I said...
My current plan, with the approval of my Uro, is to meet with another Uro who does the HoLEP procedures and look at hollowing out my prostate, with a key question being will he remove the lesion when he does so.


So, learned that a HOLEP procedure removes all of the prostate transition zone, but only a portion of the peripheral zone. The peripheral zone is typically where the cancer hangs out, and where my lesion is, so a HOLEP wouldn’t be curative. It would remove enough prostate to drive the PSA way down and make it a better predictor. The uro said an RP after a HOLEP is trickier, and requires a top surgeon. He also said an RO would likely not recommend an HDR or LDR brachytherapy following a HOLEP due to the large void in the prostate. It’d be external radiation. HOLEP provides plenty of tissue for pathology, but it is ground up, so no location info comes with it. Regarding BPH issues, it should be a one and done. No need for retreatment. In my specific case, he felt HOLEP followed by AS is a good move.

Best of luck with your decision making, JRK.
Posted 3/25/2022 1:40 AM (GMT 0)
I've been wondering what I will do when my PC gets to 3-4. It's 3-3 now.
I have a biopsy next Thursday and will find out.

I realize at age 83, I'm supposed to die soon, but I don't like that idea.

One good thing about my situation at Ironwood Urology in Phoenix is that my present urologist, Dr Bigelo does surgery, but his wife is a radiological doctor.
I've met her and she told me how radiation works.

I simply don't want to deal with this if it progresses.
I have a penile implant, so ED isn't a consideration.
Posted 3/25/2022 3:23 PM (GMT 0)
Morph is a operative word for progression...and imo it exists...but...I agree...it really does not matter in the scheme of things...any more than in any scheme...what matters...is that it is most decidedly a scheme..." believe it or not " "prove it" deadly words...that...
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