Options for me? Need to focus, but struggling

I have decided that based on my last PSA score of:
ID Date PSA Score location of Test Comments
1 10/12/2016<0.015 Dr. Porters Office Lab Corp
5 2/15/2017 <0.015 Dr. Porters Office Lab Corp
2 2/2/2018 0.009 Dr. Porters Office Lab Corp
3 4/16/2018 0.008 Dr. Porters Office Lab Corp
4 8/9/2018 0.014 Dr. Porters Office Lab Corp **
** This was my last PSA test done by LabCorp. After speaking with Dr. Porter at Swedish, he said, I was still low, but arranged an appointment with the Radiation Oncologist at Swedish.
My gut says and I believe one of the best with the Divinci machine. However, I am not beginning to wonder if even the best in the world, would have been able to prevent a rise in the PSA from happening again based on 3 of my 12 cores being at a Gleason 5+4=9 Even with everything saying no intrusion into the lymph nodes (12) removed on each side and no seminal invasion. Left nerve spared.
Fast forward to 2 years since my RP, I am now trying to figure out what to do:

My plan is that I will meet with Dr. Yu at SCCA on 8/27 and
meeting with VM Dr. Corman and Dr. K. Ray Bazadoni(sp). on 9/6 to get their recommendation.

The frustration is what to do? Who to see? Where to go? I even thought about the new facility in Everett. However, my GUT is telling me to skip the Dr.Yu appointment and just leave it to the experts at VM for their guidance> Thoughts?
Best!

Tennis, I can't really offer you any guidance on this but simply wishing you the best as you work thru the decision making process.

Jim

Tennis, far be it from me to advise you, with the ordeal I went through before finally deciding to act.
It does seem to me that it’s really low. You haven’t gotten to ,03 yet, which according to, I think the Koulikov study (TA will correct me if I’m wrong) is a point at which if your PSA continues to rise, would signify that you will need treatment.

With your G9, I would start testing monthly, and if you get to .03 plus one or two,if you feel comfortable, rises, then treat. But in the meantime get an RO lined up who you trust.
BUT IM NOT A DOCTOR, JUST A GUY RECURRING, LIKE YOU MIGHT BE.

I found the decision to treat on recurrence, way more excruciating than the decision on primary treatment,

Tennis, that sounds like a reasonable plan. If it moves, it moves---and you'll have the preliminary legwork done. If it doesn't, you'll still have the legwork done in case--well, in case....

Proto,

I noticed you said you're not a doctor just a guy recurring like Tennis. Does that mean you think he's in BCR?

We have the same PSA as Tennis so I'm following this thread and obviously obsessing on every word

Tennis,

Wishing you the best on working out your decision making process... I am battling with a pesky G6 and after recent rising PSA after RALP and BCR with Corman/Badiozamani at VM, I have switched to Higano at SCCA for future advice, care, and treatments... go figure... I would keep both appts... I have been impressed so far with the thoroughness and proactive tone set at SCCA.

pasayten

What Andrew/InTheShop said. Exactly.

Hi Three 5's and a Jack.... I was referred to Swedish Stephen M. Eulau, M.D. I believe and know he works with Dr. Meier. I know that Dr. Porter spoke highly of him and that's why Dr. Porter referred me to him to ease my mind, again, stating my PSA was rising, but still too low to do anything.
I did also reach out to a Dr. Catolana via his website, he responded:

What I am struggling with is the waiting game..... Has my PC come back? If so, where do I get treatment? Who has the best IMRT Salvage Radiation devices? Do the actual devices have that much to do with the success? I watched a video on the Swedish site when I looked up Dr. Meier and the CyberKnife looked like a very hightech machine.

Your PSA appears to be creeping up, which is surprising given your favorable pathology report, except for the Gleason 4+5 grade. I recommend that you go to a Quest laboratory for a special PSA test called, "post-prostatectomy PSA with HAMA treatment." This checks to see if you have any interfering antibodies in your blood that could be giving false-positive results. If there are no HAMA antibodies, and your PSA continues to rise, I would recommend early salvage radiotherapy. Please see my website (www.drcatalona.com) and search on “HAMA” and “salvage radiotherapy” for further information. William J. Catalona, MD

I recommend that you have salvage radiation therapy if it turns out that your PSA is truly rising, although there are other options such as watchful waiting (you may miss your second chance to be cured) or hormonal therapy (not curative). You could be treated at any large, modern facility near where you live or work with IMRT (Intensity Modulated Radiation Therapy). Call the department of radiation oncology and tell them that need salvage radiation therapy for prostate cancer with IMRT and that you would like an appointment with the radiation oncologist who has the most experience in treating prostate cancer. William J Catalona, MD

Hi Tennis,

You might find this publication by the American Urological Association useful:
http://www.auanet.org/guidelines/prostate-cancer-adjuvant-and-salvage-radiotherapy-after-prostatectomy-(2013)

It addresses the question of when individuals should initiate radiation therapy post-surgery, and in particular when adjuvant radiation is warranted. They recommend that individuals with adverse pathology such as seminal vesicle invasion should have adjuvant radiation without waiting for BCR. Based on your signature, it appears that you did not have adverse pathology (although you don't say whether you had positive surgical margins or extra-prostatic extension). If no adverse pathology, they recommend not starting RT until PSA rises. TA presents a somewhat different path, arguing that even with adverse pathology one need not initiate radiation until PSA rises, but you can't wait for the conventional BCR level of .2. Evidence indicates that outcomes are better if radiation begins when the PSA hits .03. Since you don't have a rising PSA, and you don't report adverse pathology, you should just wait. Not an easy thing to do when you have this image in your head of cancer cells quietly multiplying. Don't just do something: Sit there!

Fiddle cano I had negative margins not on test showed anything getting out here f Prostate or seminal or in the 24 lymph nodes
God Bless
Brian

Ps I am going to stick with Swedish and dr porter and dr Eleau for guidance👍

Tennis: You will be in great hands at anyone of the three. Swedish, VM or SCCA are all great institutions with the track records to prove it. Swedish has an absolutely great Cancer program for all flavors of the Big "C". Also at Swedish, if you end up treating, they have rooms available right there at the Cherry Hill campus with free shuttles to all other locations. The rooms are a bit spartan but way cheaper ($75 a night )than any hotel close in to town. It is called the Inn at Cherry Hill.

You are doing well so now is the time to just kick back and wait................... Yeh I know that is the hard part.

Be well

Roger

Hi
I live in Everett Washington and work for Comcast. I am married 24 years and have a daughter (UW) who is 24 and my son who is 19 and a COUG and is in his 2nd year at WSU. On 8/22 it will be 15 years since I was playing tennis and my aorta dissected. Www.aorticdissection.com almost 600 stories from all over the word.
I still play competive tennis for my age group 55”s and think my ranking is in the top 8 in the PNW.
I would love to meet. [email protected]
This is such a great and wonderful website!!