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Posted 4/11/2021 10:24 AM (GMT -5)
Hi all. I am having an issue that I’d like to get some input maybe from people going they the same thing I am. Was diagnosed in April 2020 with PCa. Had prostrate removed robotically on 5-8. My Gleason score from biopsy was 4+3. I have attached reports. After removal it was graded a 3+4. My PSA was 10 before surgery. At first PSA in August after surgery came back a disappointing .108. Was sent to oncologist to start radiation. Had another PSA in November and it came back at .543, again very disappointing. Had 37 sessions of radiation that ended on Jan 6th. Got my 3 mo PSA yesterday and it was .430 still. Needless to say, I’m very disappointed and concerned. Have a telecon with dr coming up but not until Wednesday. I’m guessing hormone therapy of some kind. Have not had any hormone treatment of any kind yet. As I said before, I’m pretty concerned that it’s this high still after removal and radiation. I’m new to the site and not sure how to attach my pathology report. If someone can guide me through that I’ll submit in another post. Thanks for reading.

Post Edited (Olmanhunk) : 4/13/2021 10:26:12 AM (GMT-6)

Posted 4/11/2021 10:37 AM (GMT -5)
Radiation without ADT usually gives a flare of psa due to inflamation of the prostate tissue. But this bounce may not be possible when prostate has been removed. I am sure others will tell you from their own experience.
Posted 4/11/2021 12:23 PM (GMT -5)
You need to find a good medical oncologist, who specializes in prostate cancer. A F18-DCFPyL PET Scan or a Ga68-PSMA Scan may be your best bet to locate the source(s) of that PSA. Neither is cheap or easy to obtain. Try to get one before starting hormone therapy.

You'll need to be your own strong advocate. Persistent PSA, especially after both surgery and radiation is serious. I know!

Good luck.
Posted 4/11/2021 2:57 PM (GMT -5)
Olmanhunk, welcome to Healingwell, glad you got on, after the sign on issues.

The forum doesnt offer the ability to upload documents. If you know how to use Google Drive, upload it to that platform, then share the link here so anyone on the forum can acces it. If you do that, make sure to black out any personal info, name, date of birth, account numbers SS# etc.

Sounds like you didnt get Hormone therapy with the radiation, which is pretty common these days in high risk cases (i am pretty sure persistent PSA after surgery is considered high risk.).

As Gary said above, you should inquire about scans, to figure out where the PSA is coming from. If its a hot lymph node, they may be able to radiate it.
It does sound like its time for a Medical Oncologist, one who specializes in Prostate Cancer.
And also as Gary said, you need to be your own advocate and ask a lot of questions. If some recommendation leaves you with questions then ask, if it doesnt make sense, then challenge it. And if you can get treatment at a teaching institution, NCCN (national comprehensive cancer network) large institution, you should. If you tell us where you live, some here might have recommendations.

Good luck and keep us posted.
Posted 4/11/2021 4:25 PM (GMT -5)
I’ve already had 37 radiation treatments. Didn’t think I could do anymore. I’m in Springfield Illinois.
Posted 4/11/2021 6:03 PM (GMT -5)
Olman:

They probably radiated your prostate bed. If the PC shows up in say a lymph node (or other places, most likely not in the radiated field) then they can zap the spots.

Mel
Posted 4/11/2021 6:50 PM (GMT -5)
After 35 radiations, my psa kept increasing, so we did a scan and located pc in lymph nodes. Radiate nodes and lupron got it undetectable. So get the scan and pin point pc. You can still radiate it.
Posted 4/11/2021 7:33 PM (GMT -5)
Olmanhunk - Did your post-op pathology include removal and testing of any lymph nodes? The only easy way to share your report is to copy/paste relevant sections into one of your postings leaving out names, etc.

As others have noted, rising PSA after primary and secondary treatment is quite concerning. However, monitoring is probably the best route for a while to see if it stabilizes or goes up enough that a high powered scan might find what is causing the rise. Hormone therapy would reduce your PSA but that make it difficult for scans to find anything as the “PSA inflammation” is reduced.

Given the serious nature of your results so far, you might want to consider going to one of the top cancer institutions for an evaluation. You have your pick of Chicago, St. Louis, and Indianapolis or more if you want to travel. Some of this depends on your insurance coverage but you would get a good second opinion on your situation and recommended treatment options. You can still have treatments locally but Springfield will probably not have access to the newer scanning methods that only some major institutions have.

Make sure to ask about genomic and genetic testing at your next meeting. Does not change much but can provide some information that may guide future treatments. Good luck this week.
Posted 4/11/2021 8:13 PM (GMT -5)
Took 4 lymph nodes from the left side & 10 from the right. All were negative. Perineural invasion identified. Left anterior apex and left lateral margins positive for carcinoma. Margins negative for malignancy. Seminal vesicles not involved by tumor. No extraprostatic extension identified. That’s straight from the report.
Posted 4/12/2021 5:51 AM (GMT -5)
Olman, I would also second the suggestion to get to a prostate cancer specialist in Oncology. I know the area you're in--I lived in downstate Illinois for years--and would suggest you at least do a video consult with someone at Siteman in St. Louis. It shouldn't be hard to set up--a few phone calls down there to the new patient line is the place to start.
Posted 4/12/2021 2:04 PM (GMT -5)

Hello, Olman ---

We welcome you here, as a brother, compatriot, and comrade!

You've found a great place --- we've got members contributing here from all across the United States --- and we have members from across the globe, as well.

We listen, we share first-hand experiences to help others, we offer advice when asked --- and we contribute insight --- with the common vision of helping the "next fellow" down the road.

You've already received some valuable treatments. We're thankful to hear from you.

It's always a good idea to seek out a "second set of eyes" to go over your reports, medical records, pathology reports, and current scans.

In my case, I see my local oncologist here --- but travel to Mayo Clinic in Rochester, Minnesota, a couple of times a year --- for follow-up scans and consultations --- all of which is then shared with my local oncologist. It's a shining example of "coordinated care" in action.

I will echo our loyal comrade Halbert's advice --- with your location in Illinois, the Siteman Center in Saint Louis has a stellar reputation for excellence in oncology. We have other members here who have sought treatments at Siteman.

These days, there's a lot of consultations that can be done virtually --- and the sharing of your records can be done electronically.

One of the main reasons Mayo Clinic had become an integral part of my healthcare plan --- they offer some tests and scans that are not available in my immediate area.

On my first trip to Mayo Clinic, one of the first things they did was to go through all my past records and treatments with a "fine-toothed comb" --- to create an accurate assessment --- and to lay the groundwork for my future healthcare.

I came to the realization, one day, and the phrase, "Go BIG, or GO HOME" came to my mind, after talking to a close friend of mine who shares our same health concern.

That's the day I decided I needed something more --- it didn't take away my local level of care --- it simply ENHANCED my level of care.

Wanting all the best for you --- continue to post --- we'll leave the front porch light on for your next visit --- let us know how you're faring!

Sent with my best,
CYCLONE ~ # Iowa State University
Posted 4/12/2021 3:40 PM (GMT -5)
My son lives in St Louis and I was considering Siteman anyways. Has anyone been there and have a suggestion on who to use. I guess I should look for a prostrate dr who specializes in oncology. Looks like they have some that meet that criteria. Thanks to all that have responded. I really appreciate it. Sure thought I had this behind me. I’ll keep battling!!
Posted 4/12/2021 4:11 PM (GMT -5)
If it were me I would get one of these before you start hormone treatment.

PSMA Pet Scan

FDA approved

https://radiology.ucsf.edu/psma-pet-scan-for-prostate-cancer

I know California seems far and very inconvenient but you are worth it.

You can also search clinicaltrials.gov for psma pet and you may find trials applicable to your situation at a closer location.

The critters are somewhere and if you had come here telling us 3+4, with great pathology, including 10+ nodes, I would be just as surprised as you.
Posted 4/12/2021 4:15 PM (GMT -5)
Psma pet

A new place in Indiana....right next door to you

https://iuhealth.org/find-medical-services/psma-pet-ct-mri-scanning
Posted 4/12/2021 5:14 PM (GMT -5)
Olman,

I had surgery there for PC 6 years ago, so I can't help much---you don't need a surgeon. I think if you call the new patient phone line and ask for a workup for your issue--they will put a team together for you. They definitely follow a team approach there--so anyone who would need to be a part will be put together.

They're used to it. If you say you need a medical oncologist specializing in PC, they will put you in the right office. After that, it's a little bit the luck of the draw--but your case will go before the whole team and the team will recommend a course of action.

I'm also pretty sure they can do all the latest scans such as PSMA etc.
Posted 4/12/2021 6:48 PM (GMT -5)
Don’t throw darts.
https://youtu.be/sc149xM3Wcs
Posted 4/12/2021 7:14 PM (GMT -5)
Clickable link
https://youtu.be/sc149xm3wcs
Posted 4/12/2021 8:05 PM (GMT -5)
Duck, Mumbo, I think everyone is telling him to get his self to a top end cancer center full of real experts in PC oncology, and that some kind of targeted treatment is needed.

Siteman in St. Louis, where he has family to help, is certainly top tier. I realize it's not Mayo, or Cleveland Clinic, or someplace on one of the coasts....but that doesn't make it inferior.
Posted 4/12/2021 8:28 PM (GMT -5)
Hal, I was just helping with his link, don’t shoot me...

ps: I referred to Chicago, St. Louis, and Indy in my previous post to him. Born in MSP, raised in Chicago area, went to college in Indiana, the trifecta of the Midwest.
Posted 4/12/2021 9:05 PM (GMT -5)
I’m going to wait & see what the dr says Wednesday. My wife thinks we should look really hard at Mayo. The advantage of Siteman is the proximity of course and I could do treatment there whereas Mayo would be tougher. I’m new to this. Does Mayo give you a plan and then you can potentially do treatments down here?
Posted 4/12/2021 9:59 PM (GMT -5)
Cyclone-ISU commented on Mayo’s ability to work with his team in Iowa in an earlier reply.

I have been to Mayo for my wife and it is an impressive place. However, they were in 100% in agreement with the treatment protocol proposed by the University of MN and became the greatest second opinion one could get. I made my wife go to both places with her cancer recurrence and she was happy to have her case and test data reviewed by multiple oncologists, radiologists, and pathologists from leading cancer institutions.

I guess what I’m saying is to visit with the Siteman team and contact Mayo as well and get the best of both worlds. Dr. Kwon at Mayo is who Cyclone is working with and his reputation is well known in PCa circles. Siteman will have some some very good doctors as well. You deserve the best care at this point if you can swing it with insurance, etc.
Posted 4/13/2021 4:37 AM (GMT -5)
Olman, the reality is that the top oncologists in the country all know each other. They collaborate all the time. Personally, I'd go down to St. Louis, get the workup there, and see what they say, and what they propose. Come back on here after the workup (take your wife along and have her take notes), and share what they are planning.

If you feel comfortable with what they are proposing--and there is the personal factor as well--how does the plan work with your life--then we're there to support you in it. If you in some way aren't comfortable, then you're free to spread your net wider. Do ask if the Siteman team is able in some way to collaborate with your local people in Springfield (or if you don't actually LIVE in Springfield, wherever you live) on the daily/weekly plan with only occasional visits to St. Louis.

Best of luck to you--this is the confusing, challenging, stressful part. Once a plan is in place, relaxing into it happens. Really. And so much of it is a comfort level when you find what I call "your team". When you find them, you'll walk away at ease. You don't have to understand what they are doing in detail--you get it quickly that THEY know what they are doing, and that is a huge comfort factor.
Posted 4/13/2021 9:23 AM (GMT -5)
halbert provides good advice. We are about 1.5 hours from Mayo (similar to your distance to St. Louis) and know a handful of people who commute for scans/tests and sometimes stay overnight if the procedures require it. They usually have more serious situations requiring more medical attention.

My wife was able to get in to see a breast cancer specialist at the University about 2 weeks from her call and a followup visit with a radiation oncologist a week later whereas the cancer specialist she wanted to see at Mayo was 6 weeks out. She called daily for schedule openings and was offered visits with the two other specialists at around 4 weeks but she wanted to stay with the doctor she chose. I only point this out as anxiety can be an issue and my wife wanted to get the "show on the road" so the University visit worked out well and the Mayo visit a month later helped confirm the proposed treatment scheme.
Posted 4/14/2021 7:15 PM (GMT -5)
Well had my teleconference today with my oncologist. He was optimistic as to where I was. He was happy that my PSA is going down. Said that I am only 3 months post radiation and that the radiation will continue to work for at least 18-24 months. He said the fact that it is decreasing means it has not spread out of the prostrate bed because the only place they radiated was the prostrate bed. I guess that makes sense. Said we will continue to monitor and do another PSA in 3 months. I told him we decided to get a 2nd opinion and he said fine because my current Urologist is leaving anyways. He is going to make me an appointment with what he called a Uroncologist (not sure that’s a title but it’s a urologist/oncologist combination I think). I will be going to Siteman hopefully in a couple of weeks. Feeling a lot better about things today than I did the last few days.

I know we’re all just guys fighting prostrate cancer and not doctors but has anyone else here had this happen to them?

Thanks for reading and all the emotional support the last few days.
Posted 4/14/2021 8:00 PM (GMT -5)
Olman, I never had radiation but...a PSA "flare" after radiation is not uncommon--sometimes it's called a bounce. More often, as I understand it, it shows up after primary radiation treatment--where radiation is the only treatment used--often as long as a year or two after treatment is done.

It's good that you are getting referred to a uroncologist--and a consult at Siteman is also a good idea--to get the opinions together and develop a plan that is both workable and solid.

Keep coming around. Your experience is valuable--you never know who the next guy is going to be who wanders in and wonders what the heck is happening.
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