New member - requesting advice for next steps - rising PSA following radical prostatectomy - decipher test score considerations

[searchingtom]

See my radical prostatectomy details below. I am in the process of determining next steps for treatment for post surgery biochemical recurrence (BCR).

Robotic prostatectomy in October 2018.

Initial PSA following surgery - undetectable (November 2018)

April 2019 .02

October 2019 .09

February 2020 .16

May 2020 .17

August 2020 .38 (last week).

I had a Decipher post RP test performed in March 2020 and it returned a score of .38 (low risk).

What would you recommend as the next steps for treatment ? Would the Ga-PSMA-11 PET/CT make sense ?

Thank you - searchingtom

Radical prostatectomy details:

•Prostatic adenocarcinoma, Gleason 3+4 (score =7, Grade Group 2; 15% is pattern 4, not cribriform), bilateral and multifocal, within 2% of gland

•Tumor forms a dominant nodule in the left posterior peripheral zone (levels 8--11) measuring up to 10 mm (at level 8 or 9); also present in the right posterior levels 2—6

•Negative for extraprostatic extension (Stage pT2) - Organ confined

•Resection margins negative for tumor

•Seminal vesicles and vasa deferentia negative for tumor

•All not identified - Intraductal Carcinoma (IDC), xtraprostatic Extension (EPE), Urinary Bladder Neck Invasion, Seminal Vesicle Invasion, Lymphovascular Invasion, Perineural Invasion, Treatment Effect.

•Margins: Uninvolved by invasive carcinoma

•Regional Lymph Nodes: No lymph nodes submitted or found

•Pathologic Stage Classification (pTNM, AJCC 8th Edition)

•Regional Lymph Nodes (pN): pNX

[Tall_Allen]

You can get an approved Axumin PET scan, or you can pay for a more sensitive PSMA PET scan. However, you are just getting it to rule out distant metastases (in which case, you would go straight to hormone therapy). Whether or not the PET scan shows anything locally, you would still need salvage radiation to your prostate bed. The PET scans do NOT show all cancer, they only show clumps of 10 million cells or more. If the PET scan shows cancerous lymph nodes (and it might, given your 3-month PSA doubling time), you would widen the radiation treatment field to include the whole pelvic area., and add ADT.

I think you should find a good radiation oncologist and discuss salvage radiation to the prostate bed (at minimum).

[searchingtom in reply to Tall_Allen]

Thank you for your fast response. I am concerned about morbdities associated with radiotherapy but probably it is worth the risk. Is it worth pursuing proton therapy versus photon therapy ?

thanks again - searchingtom

[Tall_Allen in reply to searchingtom]

So far, there seems to be no difference in protons vs photons. Because of the pandemic, you might consider "hypofractionated" salvage radiation - completed in about 20 sessions instead of twice as many. An international panel of ROs are recommending it during the pandemic:

prostatecancer.news/2016/08...

prostatecancer.news/2020/04...

[searchingtom in reply to Tall_Allen]

Thank you again!

[Hidden in reply to searchingtom]

Please clarify the pathology of the lymph nodes. Does this "not submitted or found" mean that no node was resected. If this is so, then that makes them your primary suspect. PSMA PET CT no matter what.

[searchingtom in reply to Hidden]

I will have to follow up for details from the surgeon as I do not know myself. I will reply if they can answer definitively.

Thank you for the question. Such a critical time for me,

[Shanti1 in reply to searchingtom]

I agree, with justfor on the value of a scan. The more one knows about their cancer and where it is, the better they can make treatment decisions. The biggest challenge I see with doing a PSMA PET CT is that it may not pick something up at a PSA of 0.38 jnm.snmjournals.org/content....

[Hidden in reply to Shanti1]

You will probably agree again after I have pointed out that his PSA has doubled within the last 3 months. I have an excel file compiled from a paper by Heidelberg that gives the probability of PSMA detection as affected by a number of variables. First off, I do not know searchingtom's age, so I can not enter the data, but off the top of my head, a PSA of 0.38 and PSADT of ~ 3 months will yield something well above 50%. I am an engineer and as such very prone to digging into the details. A nice piece of engineering is characterized by its concept, or size, or difficulty, etc. This applies to the general public, the press, the politicians, etc. For a seasoned engineer like myself a quick peek on its detail drawings is enough to judge

[Shanti1 in reply to Hidden]

Hi Justfor, what a fantastic detail to incorporate. I hadn't considered PSMA PET detection rate as being influenced by PSA doubing time as well as level. Would you mind posting a link to that paper? Thank you!

[Hidden in reply to Shanti1]

link.springer.com/article/1...

Table 4 and onwards list the per variable coefficients

[searchingtom in reply to Hidden]

I am 67. My PSA doubling time varies widely month to month (look at the time it took to go from .16 to .17 (3 months) and then 3 months later it doubles - weird.

[Hidden in reply to searchingtom]

Monthly tests for me interleaving two labs for early warning. I guess you are not going to wait for another 3 months before your next test.

[searchingtom in reply to Hidden]

absolutely

[Hidden in reply to searchingtom]

Your probability of PSMA detection, according to the mentioned Heidelberg paper, is 70% .

Details here: ibb.co/GQyqXDp

[Hidden in reply to searchingtom]

If it proves that your surgeon didn't resect any lmph nodes then please do yourself a big favour. Find a competent RO that can adjust your irradiation planning to the possible findings of PSMA PET CT. They use the fancy term of "dose painting". You will probably be a most suitable patient for it.

[searchingtom in reply to Hidden]

From the surgeons office - "You are correct, no lymph nodes were taken out at your prostatectomy. No node resected is correct."

I asked a follow up question "would that be because at the time they thought that there was no involvement in the lymph nodes?"

I presume the answer will be yes. In hindsight it looks like it could have been the wrong decision.

Are you meaning also that the Auxium PET scan would not identify what cancer possibly could be in the lymph nodes because of its lower level of resolution ? The PSMA probably isn't covered by insurance (Medicare mostly)?

Thank you for your response !

[Hidden in reply to searchingtom]

You are the first person to know having done this. FYI I had 20 lymph nodes taken out. In N. America the usual number is 10+/- 5. Over here in Europe it is almost the double. Now there is the following route ahead of you. First a mpMRI that it is covered by insurance and can spot some suspecius places. Next the PSMA PET/CT. As I explained earlier, if anybody tells you that it has a low detection probability, just ignore him/her. The radiation treatment that everyone will push you towards has a succes rate of 40-50%. And you will get all the side effects and a small probability of developing secondary cancers after 10+ years. If you are in your 70s then something else will probably catch you first. If you are younger, you must weight the pros vs the cons. The idea behind the pet scan is that if you can establish lymph node involvement you can procceed with salvage lymphadenoectomy. You will have to find an experienced surgeon for this. Most, probably all, people will tell you that as extended as this can be it will not "get it all". Those comments come from people sold to the idea of "cure". For me there is no cure. Only ways for delaying things. And the more ways you have available for sequencing, the longer you can push it down the road.

[Shanti1 in reply to Hidden]

Hi justfor, I understand your reasoning for lymphadenoectomy, but a 40-50% success rate for salvage actually sounds pretty good to me, if by success rate you mean the cancer doesn't return for 5+ years.......

[MateoBeach in reply to searchingtom]

That is correct. You can get a 68-Ga-PSMA PET at UCLA for $2700 you must pay. If you are a veteran you can get a slightly more sensitive PSMA PET scan at the Los Angeles Veterans Medical Center for free. (I’ve had both)

PSA above 0.20 is likely sufficient to identify PSMA avid cancer.

[Shanti1 in reply to Tall_Allen]

TA- If distant metastasis are found on a scan, is there still value in doing pelvic salvage radiation?

[Tall_Allen in reply to Shanti1]

Not that I know of

[Shanti1 in reply to Tall_Allen]

Thanks for the reply. I was asking in part for the benefit of the original poster, but also because salvage radiation was recommended for my husband when his post RP PSA was 5 and CT/ Bone scan did not show the location of the mets . We opted to pay out of pocket for a C11 acetate PET which showed lymph nodes, 2 lung mets and 1 bone met. At that point, we declined salvage radiation, but it is interesing that it has been offered to us twice since the original offer in May 2017 by ROs despite my husband's metastatic condition. He currently has a PSA of 0.014 on ADT and Zytiga.

[searchingtom in reply to Shanti1]

That is interesting. how much (approximately) did the C11 acetate PET scan cost ? (its ok if you do not feel like answering). Did your husband have the Decipher test ?

[Shanti1 in reply to searchingtom]

Hi- This was back in early 2017 before the PSMA PET scan was well known. The PSMA PET was shown to be superior to C11 acetate. I am not sure if anyone offers C11 acetate anymore, the place we had it done in phoenix no longer does. We did have a PSMA PET done recently at UCLA for $3000.

[searchingtom in reply to Shanti1]

Thank you !!

[rscic]

I agree with the comments of Tall_Allen with the possible consideration of widening the radiation from the region of the prostate to the whole pelvic region & the peri-iliac regions whether you demonstrate cancerous lymph nodes or not. This eliminates later potential problems (usually solvable) with radiation overlap if only the bed of the prostate bed is radiated 1st and later pelvic radiation becomes necessary.

I have been told sometimes hormone therapy (ADT) is given in addition to the radiation and might be considered in your case with a doubling of PSA in just 3 months .... I am told this also is somewhat controversial.

If the Axumin or PSMA (if you get PSMA) scans show distant metastasis (outside the pelvic + iliac soft tissues) this puts you beyond my experience.

I had adjuvant Radiation (ART) to the pelvis. The prospect for RT complications is low and the effect on life is generally low. I trained for an Ironman Triathlon (2.4 mile swim + 112 mile bike + 26.2 mile run = 140.6 miles) during ART and completed this about 4 weeks after ART ended. When talking to my Radiation Oncologist (RO) before treatment he encouraged me to continue training and stated he believes if someone has another goal they are working toward during RT then they are way less likely to experience RT complications.

justfor has some good points.

Good luck & keep us up to date with your progress.

Rick

[fluffyfur]

I agree with TA advice to seek an Axumin scan, and if you can afford it do the PSMA at UCLA. This could change your treatment pathway. You need to find out if your cancer is in your lymph nodes!

My husband just completed 35 sessions of salvage radiation because like you, his PSA started rising after a prostatectomy. Difference is he had positive surgical margins and 37 nodes taken out during surgery (which were negative). So his radiation oncologist felt like his cancer was localized to his prostate bed.

Talk to an RO (or two) and start formulating a plan. With a cure rate of potentially 50% or at least extending the time before you need other drugs, I think it's worth it. JMO.

[j-o-h-n]

More info please Location? Treatment Center(s)? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/18/2020 2:36 PM DST

[searchingtom in reply to j-o-h-n]

Hi ! I am located in Wisconsin. I had my robotic prostatectomy perfomed by Dr. Kenneth Jacobsohn at Froedtert near Milwaukee. I am looking at the University of Wisconsin Madison Dr. David Jarrard as the urologist/oncologist. I am looking at Madison because of their academic connections and many clinical trials. The seem very advanced compared to other groups in Wisconsin. Let me know if you need any other information - thanks.

[fluffyfur in reply to searchingtom]

Is he a radiation oncologist? You really need to speak to someone that specializes in radiation to the prostate. Urologists only do surgery.

[searchingtom in reply to fluffyfur]

I am getting a scan first and then off to a radiation oncologist. My current urologist says our region only does the Auxium scan not the PSMA. I am contacting University of Wisconsin Madison to see if I can get a PSMA there. Thanks for responding !

[fluffyfur in reply to searchingtom]

UCLA is the only one doing the PSMA other than some clinical trials (like with the NIH) that have been put on hold due to the pandemic. Feel free to ask at UW but I'm pretty sure they don't offer it.

[searchingtom in reply to fluffyfur]

OK thanks. Do you have experience with UCLA on this ?

[fluffyfur in reply to searchingtom]

Yes although we opted not to get the scan because of COVID travel restrictions in March and could not wait due to a rising PSA. See this post for contact info.

healthunlocked.com/advanced...

[j-o-h-n]

First of all thank you for your quick and detailed reply. Next you may want to copy and paste your details in your home page for your access and access of members. Finally, you may wish to post your new treatment center and doctor in the event someone has had experience with them. If you do post this data do it on a separate day in the future and do it as an "open post".

(Who knows you may get some good or bad references on your future choice of treatments).

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/19/2020 2:28 PM DST

[MMMayhem]

Similar story here, except my PSA post-RP dropped for a few months but never went below 0.48 then started rising. The scans will be the first thing. I was at MSKCC in NYC for my surgery and scans. They detected a suspicious lymph node and we proceeded with ADT and 3 months later did 40 sessions of RT. I had not heard that combining ADT with radiation was considered somewhat controversial as another poster commented. My RO recommended it and that I be on it for a few months to weaken the remaining cancer cells as a way to make the radiation therapy even more effective. I was on ADT for a total of 9 months and finished that April of 2019. PSA has been undetectable ever since. If you go the ADT route, I suggest including a weight training routine to help combat muscle loss and the myriad of other side-effects that tag-along with the treatment. It's no fun, but it beats the hell out of most alternatives.

Best of luck!

Mark

[searchingtom in reply to MMMayhem]

Thank you so much for your response. I hope I can lean on your input as I progress. I am SO impressed with the members on this forum. High quality and quick responses and the empathy is tangible.

[immunity1]

Yes, I would advise a PET PSMA scan. 6y after RP, adjuvant RT and ADT, I had a PSA of 0.3ng/ml and PSADT of <3mo. I had PSMA avid lesions that were treatable systemically (in my case Lu).