Hi foges11, I have an appointment next week with Dr. Wee, a medical oncologist at Cleveland Clinic's main campus. My PSA was 2.0 six weeks after my RP surgery in March, however the PET scan I had last week was negative. I had also seen a radiation oncologist last week, and he said that if it weren't for the j-pouch he would have recommended full pelvic radiation. He says the cancer cells are microscopic and have not metastasized. More than likely, Dr. Wee is going to recommend Androgen deprivation therapy as a first step. I'll find out next week and will post what he recommends.

jfill21 —- Thank you for the reply and willingness to share.  Really would appreciate the feedback post visit.  I am making appointments at HUP and SKMC over the next few weeks, I will also advise.  Jeff

Hello foges11. I'm replying to share info and hope you continue to do same.

As a reminder, following my prostatectomy the biopsies showed the cancer had extended into my right seminal vesicle.  I first saw a radiation oncologist who then referred me to a medical oncologist since radiation was out of the question. I met with Dr. Wee, a medical oncologist at Cleveland Clinic, this week. He agreed radiation is not for me, but he also said that ADT is usually prescribed following radiation treatment, sort of a one-two punch, and not used solely. However, because of my j-pouch we're in a grey area and there's little documentation on the use of ADT alone. He says I am at "high risk" for metastatic disease. In his opinion, I have three options at this point:

1. Start ADT for a couple of years, although he doesn't know if two years is enough or even if it will help. Continue to monitor PSA.
2. Wait and watch to see if my PSA level continues to go up. If it goes up a little, we can potentially delay ADT somewhat, but if the PSA goes up a lot, we would start ADT now. This is the option he recommends.
3. Wait and see if I develop metastatic disease and if so, we would have to use at least two agents at that point.

I had another PSA test this week which showed a slight increase from two months ago. I am waiting to hear back from Dr. Wee with his recommendation.

Yes, I am anxious. I feel like I'm doing everything I can to be smart about this but I really need some good news. For anyone reading this, any thoughts or experience you can share?

Hi,

so while I do not currently have Prostate cancer, I have been running a high PSA (over 10) for many years. Multiple biopsies have shown nothing. This is a subject that as a poucher makes me nervous. I keep close tabs on all of the forums as to see what men are doing these days.

I my opinion I would not wait for metastatic cancer to rear its ugly head. While radiation will almost always be contraindicated for us pouchers, I would seriously consider ADT at this point.   It usually does a good job initially (but I do not know how long) of keeping the cancer cells in remission that have spread out of the prostate bed.

now I realize it’s easy for me to say ADT as I am not the one that will have the side effects.  But from what I have read, it could could keep things at bay for a long time.

I do not even know what I would do as a first line therapy if PCa ever shows in my body.

keep us posted and hoping you have a good outcome.

Jfill21 thank you for the detailed information. I have my first consult tomorrow at University of Pennsylvania, with Dr. Narayan.  Will update over the weekend.  

Jeff

Hello - Met with Dr. Vivek Narayan, Link to bio , Medical Oncologist HUP.  Focus area is hormone and chemo therapy.  He was engaging, informative, and patient with all of our questions.  It was an education and good to speak to someone vs continuous reading and searching. 

May be redundant for some that have been on this journey, but for me it was new and very informative about hormone therapy: 

1. Radiation and surgery are the only “cures” or way to eradicate the remaining prostate cancer cells. (Surgery has already removed the prostate in my case)
2. Re-established and confirmed radiation is not an option for jpouch
3. Hormone therapy doesn’t cure prostate cancer, just controls
4. Doesn’t work forever, but can be used without radiation

It was determined that hormone therapy is not recommended at this time, based on my age, 57, active lifestyle, quality of life and level of PSA, 0.014, up from 0.003 in March. Side effects that have been documented in other publications

1. Libido
2. hot flashes
3. weight gain/loss
4. muscle mass loss
5. bone density loss 

However, if the PSA levels continue to accelerate at the pace during the next test, Sept 2022, the following options area could be available:

1. PSMA, PSMA link, is the latest pet scan that can assist in determining the tumor location.
2. 1. However, PSA levels need to be greater than .2 “detectable” the higher the PSA the greater chance of detection
3. PSMA would be able to provide a more specific area, organ, lymph node etc that could be explored and directly treated through:
4. 1. surgery
   2. radiation if not in the jpouch region

Waiting around for the PSA to rise or gets to a detectable level will be a difficult adjustment, but at this time that is  the option that has been presented. I am going to continue pursue other consults at Temple University Hospital and SKMCC, in addition, exploring other treatments. Please chime in if there are other not traditional paths and or if i could be viewing differently.  

Thank you for the collaboration and providing an outlet for jpouch/prostate cancer community!  Knowing that I am not traveling this journey alone is comforting and cathartic.

Hi,

I think you received excellent information and very reasonable advice from the doctor.

While you are left hanging for the time being, they kind of have you on some sort of ‘active surveillance.’  (although I am using the term out of context as originally intended).

As I indicated earlier, this is an issue near and dear to me as I run a very high PSA. My surgeon warned me to deal with any PCa issues before surgery as radiation will never be an option in my post TPC/IPAA world.

I heard about a new cancer therapy called "NanoTherm" (see magforce.com). But it is still subject to studies (also for the treatment of prostate cancer in the US). And I do not know if it is applicable after prostatectomy, they speak of "focal treatment of solid tumors".

Steve

I looked up the treatment and it seems to be a first line treatment. There is a current FDA  trial going on for PCa, and it excludes men with prior surgery and high Gleason scores.

thank you so much for the information. It’s good to know the researchers continue to try and develop new and innovative ways for cancer treatment.

if there is a non surgical/non radiation treatment out there I would be interested, in case the future does not bode well for my prostate.

SteveG, thanks for the note and information.  Here is the link to the Link to clinical.gov site. Correct high scores and previous surgeries disqualifies at this time.