Persistent PSA of .32 ten weeks after surgery - update

As an update, I met with my RO this week and developed a plan regarding my Persistent PSA. Some others here have it and maybe this will help.

By way of review I've have little leakage over the last three months, my ED symptoms are minimal, G 3+4=7 Grade Group 2, G pattern 4 = 10%, pT2c pN0 pMn/a, carcinoma organ confined in about 15% of the gland, EPE SV LN negative, PNI present, pathology verified by Dr. Epstein at JHMI. I did have one small positive anterior margin 0.1 mm long and limited < .3mm. 

My main concern is I've had ulcerative colitis for 45 years, and have had lower urinary tract symptoms (LUTS), a group of clinical symptoms involving my bladder, urethra, urinary sphincter and prostate for about 7 years. I had a TURP for it one and a half years ago that didn't alleviate the problems at all.

So after two PSA's, both at .32 ng/mL, the alarms went off. I'll have another PSA tomorrow and yet another in 4 weeks. I will also get another Decipher Test; my first one was 15 months ago, and most importantly, I'll get an Axumin PET Scan, also know as a Fluciclovine (¹⁸F), or a anti-1-amino-3-18F-fluorocyclobutane-1-carboxylic acid(FACBC). It's specifically for those of us with suspected PCa recurrence based on elevated PSA levels.

 

Then in four weeks, I'll meet with both my RO and my surgeon, so determine our next course of action. This also gives my system about four months to recover from surgery. 

 

My RO thinks I will need SRT and possible ADT. I'm going to investigate SBRT clinical trials for persistent PSA, and what I'd really like is some sort of active surveillance. Those RT side effects may be very daunting.

 

Some articles I found that talk about Persistent PSA include:

 

http://ascopubs.org/doi/full/10.1200/JCO.2005.08.904

http://ascopubs.org/doi/abs/10.1200/jco.2014.32.4_suppl.32

http://ascopubs.org/doi/abs/10.1200/jco.2011.29.15_suppl.e15041

http://ascopubs.org/doi/full/10.1200/JCO.2011.38.2788

http://ascopubs.org/doi/full/10.1200/JCO.2016.67.9647

I hope the above helps some of you in the same boat.

Gary, sorry to hear you are dealing with this.

From what I've read, on this forum, the advances in SRT techniques have really lessened the chances of bad side effects. Of course there's always a chance.

Hi Gary,

I don't know anything about persistent psa, but I think a .32 psa after surgery with a good pathology report means that something is still down there. The chances are that it's still in the general area, and SRT would have a very good chance of zapping it. I agree with Pratoman, I don't think the SEs should deter you.

I certainly wouldn't opt for AS if my doctors are recommending SRT, but that's just me. You appear to be super informed so I'm sure you'll make the right choice for yourself.

Please keep us informed.

Hi Gary -

I too had persistent PSA, but mine was over 2. I went to UCSF for the 68Ga PSMA scan and it found left a few left side lymph nodes and the prostate bed had uptake.

The da Vinci surgeon removed ten nodes - 8 from the right, 2 were positive, and two from the left not positive.

I hope your scan shows where the cancer is, but with such a low PSA not sure it will.

I also had my surgery at U of Miami.

Bobby Mac

My husband has a past history of ulcerative colitis. He met w/ his gastro before he started SRT. He just finished 40 treatments at 76 gy. He was on Lialda 4 times a day to lesson inflamation to the colon. Bob finished on Thursday of last week on Tues. he started noticing some constipation and rectal pain and burning. Oncologist said put Prep. H on it which he did and it's feeling much better. Except for our 4 hour drive every day for 40 days, radiation has so far been a non-event. Bob has been extremely tired but as I stated he's been doing a 4 hour drive every day and he's also on firmagon shots for 6 months. Prat is sending you my email for any further questions or want to talk about anything. ~Miki

I don't think SBRT is currently being used for SRT. A good RO and team can get you through with IMRT. The machines now are very good, very accurate.

Just make sure they know your history and complain a lot during treatment. ;)

You'll be fine. It won't be easy, but it can be done.

Hang in there,
Andrew

Thank you all for the support and advise. IMRT is, I know, the RT I'm looking at.

Miki...an email will be headed your way as soon as I recover from a busy weekend.

Bobby Mac...what were your reasons for going to UCSF, a superb PCa hospital, for the 68GA PSMA scan when the Univ of Miami offers the same procedure?

Does anyone know the differences and relative pros and cons between a Axumin PET Scan and a 68GA PSMA one??

Hi scar....neither my uro nor my RO have suggested the 'hitting it hard kitchen sink' approach. I'm about 12 weeks post surgery.

Both want to better understand the why and where for the Current PSA. That's one reason for my question above, about the two types of scans. I'll get the results of my recent blood draw on Wednesday, when I see my surgeon.

I also hope to have the results of a Decipher test within the next four weeks when I see my RO. Then we (I) will have more data, to decide how hard we hit it. RT comes with it's own package of complex and insidious long term side effects that I'm not looking forward to.

With all that's known about PCa, it's maddening how much uncertainty there is about it. Persistent PSA takes it to a higher level

I'll keep you posted.....