Received results today from Axumin scan performed last Thursday. They plan to start me on ADT with radiation in 8 weeks. Thoughts welcome.

[searchingtom]

Any feedback you have is welcome.

IMPRESSION:

1. Fluciclovine PET/CT with no definite signs of local or distant prostate cancer recurrence.

2. Focal uptake in the right sacrum, with no underlying bony changes, is indeterminate however likely secondary to degenerative change, attention on follow-up images is recommended. If clinically indicated, additional dedicated MRI might prove reasonable.

Background data:

Diagnosed with Gleason 7 (3+4) in July 2018. Radical prostatectomy in October 2018. PSA rising to .38 on August 12 2020. Decipher post RP test score was .37 (low risk). Determining next steps. 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. Next steps as of Aug 19, 2020 is to pursue a scan (preferrably PSMA).

•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]

Congratulations on no distant metastases. You can move forward now with every hope of a cure. With your PSA below 0.6 in August, you could consider adjuvant ADT optional - but you may want to get another reading before deciding. If the PSADT is rapid, you may want ADT anyway. Since it is at U Wisconsin, I assume it is hypofractionated - 26 treatments at 2.5 Gy each?

[searchingtom in reply to Tall_Allen]

Thank you for responding so quickly. My UW Madison consultation with Dr Floberg - radiation oncologist - is on September 29. I have also a consult set up with Froedtert / Medical College of Wisconsin to get another opinion. You are such a valuable part of this community - I appreciate it.

[Tall_Allen in reply to searchingtom]

Usually ADT begins 2 months before radiation. How do you know he plans to use ADT if you haven't talked to the RO?

[searchingtom in reply to Tall_Allen]

It came from his urologist partner at UW Madison. I am looking forward to the consult to get some answers.

[Tall_Allen in reply to searchingtom]

That explains it. Urologists are often pretty ignorant about this sort of thing. It's not their field.

I think you've already answered most of these questions, but there are a few at the end you may want to ask about:

prostatecancer.news/2017/12...

[searchingtom in reply to Tall_Allen]

Thank you !!

[tango65]

The Axumin PET/CT could help in the management of BCR, but the detection rate with a PSA of 0.38 is low, less than 30% for whole body and less than 20% for extraprostatic cancer lesions. If you could, you should consider to have a PSMA PET/CT (Ga 68 or 18F DCFPyl) before the planning of your treatment is decided.

redjournal.org/article/S036...

ncbi.nlm.nih.gov/pmc/articl...

There are clinical trials for the PSMA PET/CTs:

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/resu...

If a PSMA/PET CT shows the cancer confined to the pelvis radiation with or without ADT (your PSA is low) has a high percentage of success.

[George71 in reply to tango65]

For what it is worth -- I had a whole body PSMA scan in Houston in 2017 PSA at the time was 0.4 ( paid for at my expense) showed nothing.

Had another PSMA this March 2020 @ National Institute of Health in Washington DC> in prep for a trial (since cancelled due to corid19) PSA 1.17 at the time of the scan showed suspicious one quarter inch spot in the prostate bed area.

Called Dr. Kwon to see about spot welding and they told me to wait till PSA reaches minimum of 1.5 then call them back.

I have talked with M D Anderson Houston (where I live) and Houston Methodist ranked in the top 3 in the U S for cancer research. They are anywhere from (a) look for another immuno trial) (b) do nothing till PSA reaches 10 to 20 (whatever my comfort level is ) then intermittent ADT -- to (c) radiation of prostate bed and surrounding lymph nodes with out any ADT -- or 6 months ADT.. The Radiation Onc. said 65% chance of 5 year no evidence -- with no ADT and 80% with 6 months ADT but he recognized the down side of ADT may not be worth the 15% increased chance of a cure... He was confident it would kill everything in the area radiated either way but if it is already micro mets somewhere else it could come back.

I had surgery in April 2016 and have done nothing but Avodart on and off for the last year and a half. My post op PSA was 0.03 --- currently 1.37 -- they found 4 of 12 lymph nodes with micro mets.

[tango65 in reply to George71]

In your situation, knowing that there is cancer in the prostate fossa I would have decided to go with radiation to the fossa and the lymph nodes (whole pelvis radiation ) and short term ADT.

astro.org/ASTRO/media/ASTRO...

Avodart is not a treatment for prostate cancer recurrence.

[searchingtom in reply to tango65]

Thank you for your comment. I will take it into consideration for as much treatment as I need to get a crack at stopping this. Tanks again !

[tango65 in reply to searchingtom]

You are welcome. If I were in your situation I will discuss about a PSMA PET/CT to be sure there are not distant metastases and the location of metastases in the pelvis. The PSMA PET/CT have had a significant impact in the treament planning in about 50% or more of patients with BCR. The Axumin scan could also be useful if the PSA is over 2., with your low PSA the situation is different.

Best of luck on your journey.

[George71 in reply to tango65]

Thanks Tango65,

Thats good stuff, The Radiation Onc's. reasoning was that if after nearly 5 years -- all that was visible in a super sensitive PSAM scan was a questionable quarter inch area in the prostate bed - and the PSA was still only 1.3 -- with no treatment (ADT or anything else other than Avodart) any meaningful PCa left is likely still only in that immediate area. He noted that 70% of all 70+ year old men have micro mets -- many of the micro mets will never do anything. Another PCa doctor with the University of Texas Cancer Center said if you go looking real hard you will find something wrong with everyone. The question was how much longer till the spot would get big enough to be see in Pet/CT scans or MRI -- it could be 2 or 3 more years -- without the side effects of ADT -- radiation damage etc ... And meanwhile there are likely going to be immuno therapies coming in the next 4 or 5 years. Had I done what was recommended I would likely already be CRPC. Some of these treatments may speed up the process and have really bad effects on the heart, muscle wasting, bone loss, dementia. M D Anderson doctors at a seminar in front of 100 + patients said ADT does not extend OS .

I think if we can just all hold on for 5 more years there is going to be a big breakthrough in immuno-therapy --- I think it will likely come via what has already been shown to be effective (some people have been cured --at least so they claim) They radiate one tumor with only one or 2 low dose treatments to stimulate cancer damage -- and inject immuno-therapy drugs Keytruda / Yervoy into the tumor .. and then wait for the persons own immune system to in effect make its own vaccine and kill cancer throughout the body.

We now have these super sensitive PSMA scans -- but for what -- if we are Just going to radiate in the blind the minute the PSA comes back anyway . What good does early detection do if you don't at least wait till it shows and then target the spot with a little boost.

[searchingtom in reply to George71]

Thank you for your detailed response - I really appreciate it and it will help me a lot with my understanding.

[George71 in reply to searchingtom]

If i'm not mistaken, your situation is very similar to mine... I had clear margins everywhere, the only difference was they found 4 of 10 lymph nodes with micro mets. post surgery pathology report. During the surgery they dissected 2 other lymph nodes while I was in surgery and they were clear.. The doctor is world renowned -- told me in recovery room -- he has done over 10,000 robotic prost. and he was 95% sure he got it all. It was 4 weeks later when we found out about the 4 lymph nodes and the post surgery 0.03 PSA

It is possible at least some of your PSA may be coming from nearby lymph nodes since, like me, all your margins were clear.

As I said earlier Dr Kwon does the coline Pet/ct and said no point till PSA was at least 1.5 --

So, .... this is just an opinion like everyone else -- but I agree with tango65 -- you are likely going to radiate anyway -- it seems you have 2 options -- you could just go ahead and shoot the nearby lymph nodes and prostate bed -- then see what happens -- it is likely to set it back years or forever. -On the other hand if you wait till the PSA is high enough (1.5) to run the PSMA test and get a good result -- they may see something outside of the area they were planing to radiate -- in which case you could get it all at the same time. . In my case it took nearly 5 years to get to 1.3 - (Avodart slowed mine down a lot - Snuffy Meyers recommendation)- my odds are nearly the same as if I had done it 5 years ago -- and as some had said the horse may have been out of the barn already. 3 or 4 Doctors wanted to put me on ADT nearly 5 years ago as soon as they knew it was in the lymph nodes .... the fact is -- if I had chosen radiation instead of surgery , I would have been on ADT for 2 years post radiation (2 years ADT with radiation is what they were requiring in 2016 -- that has since changed to 6 months -- I could not talk them out of it at the time -- that's why I chose surgery) and if I had done radiation, I would not know to this day I have micro mets in any lymph nodes. I would just have a rising PSA because they would not have radiated my lymph nodes.

I asked about radiating the spot only -- and one Dr. said he would not want to do that because it is in the area near the prostate bed and would be too close to come back and radiate in the near vicinity again later if needed.

[searchingtom in reply to George71]

Thanks so much for your detailed response. I certainly will make the most informed decision I can and your information helps.

[rscic]

I used to live in the Fond du Lac & the Stevens Point areas. UW-Madison would have been my choice if I was still in WI.

PSMA might be available at the Mayo clinic if it is not yet available in Madison. I believe threshold for PSMA detection of metastasis is usually around a PSA of 0.5

Hopefully the tumor is only in the Prostatic bed and/or pelvic soft tissues. If so, you are still possibly curable with radiation.

When I had radiation they treated the prostatic bed, the pelvic soft tissues & the peri-iliac lymph node regions. 8 weeks of treatment. I was able to train for an Ironman Triathlon (2.4 mi swim + 112 mi bike + 26.2 mi run) during radiation treatment (RT) which I completed about 4 weeks after finishing RT. I had to watch my sleep to be sure I got enough especially the last few weeks of radiation treatment. I slept a bit more than usual. I did not experience any RT complications. My Radiation Oncologist (RO) was a big believer in having a goal during RT and believed those who had a goal during RT had no/fewer RT complications.

I would speak with a Medical Oncologist (MO) as well .... maybe at UW-Madison.

Good Luck,

Rick

[searchingtom in reply to rscic]

Thank you for your response fellow Wisconsinite ! I am talking with Madison in around 10 days or so.

[George71 in reply to rscic]

Hi Rick,

a couple of questions -- did you have surgery prior to the radiation? If not, why did they radiate pelvic soft tissues & the peri-iliac lymph node regions? Did you do ADT with the radiation and how long? What year was it done and what is your current status..

Dr. Kwon still uses coline Pet/CT @ Mayo I spoke with them a couple of weeks ago. Would not see me until my PSA reaches 1.5

Thanks,

George

[rscic in reply to George71]

1st I should tell you I am a retired Radiologist (I read CT's x-rays, MRI's, Ultrasounds, Mammograms, PET-CT's etc.). So, while I was not a RO or an MO I do have more back-round in medicine than the average Prostate Cancer Patient. I also was a research assistant for 2 years prior to going to medical school. So, I understand research & probability better than the average Prostate Cancer Patient. So, this is where I am coming from.

did you have surgery prior to the radiation? -- yes .... Surgery in 2019 (May 15) ..... I had microscopic extra-capsular extension & microscopic pos Surgical margins with neg lymph nodes. Neg Axumin study. I considered PSMA but PSA was so low the chances it might detect anything were marginal.

Radiation started 90 days after surgery and was finished in mid-October 2019.

My last PSA was 0.01 & I get PSA readings every 12 weeks. I am told the chances of a re-occurrence are greatest within the 1st 5 years but I will have to be on watch for the rest of my life for a re-occurrence as Prostate Cancer can rarely re-occur even decades later .... this is similar to breast cancer which I am more familiar with professionally.

Interestingly the Urologist Surgeon said no add'l treatment at this time .... however, the MO said RT. The Urologist is a Surgeon & the MO is involved with treatment and I was fortunate to find a MO who is a well known Prostate Cancer researcher. I followed the MO's advice. This is why I encouraged you to consult with an MO.

why did they radiate pelvic soft tissues & the peri-iliac lymph node regions? -- I had adjunctive RT not salvage RT. So, they anticipated the tumor was there (adjunctive RT) rather than waiting for PSA evidence of the tumor (salvage RT). It is a bit controversial and authorities differ as to whether adjunctive RT was appropriate in my situation. My MO is a well known researcher & is a "do everything possible to kill it dead" kind of guy. If the pelvic soft tissues & the peri-iliac lymph node regions are not radiated and you have to go back and radiate these areas, I am told there are difficulties with the overlap regions as one can only get a lifetime dose of radiation to a given area. I did have an area on an iliac wing which showed up on MRI & was probably a vascular malformation or other benign finding. It was radiated anyway to be sure. PSA was low so the chances that something would show up on MRI was minimal and this did not show up on the Axumin study.

I did not have ADT with radiation (I have not had ADT) but remember my RT was adjunctive RT not salvage RT (yours would be salvage RT). Opinions differ as to whether or not I should have gotten ADT in my situation but my MO did not think there was a benefit & he knows the research & I trust his judgement.

Check other PSMA sites as they have fewer restrictions. I believe UCLA will do this test at less than 0.5 PSA. I now live in Las Vegas (I am nearly 69 & retired) and am more familiar with the sites nearer to me though I have never gotten a PSMA.

I find the best use of this site is to help formulate questions to ask to your own experts (make a list & take it to your appointments). IMO using this site as an end-all be-all medical advice site is not recommended. There are a lot of people here and some have some extensive medical information but this should be treated as information and not the same as advice from your own experts (your Doctors). This site does a good job of pointing people in the right direction.

I am happy to relate my experiences and what I know -- just continue to ask.

GOOD LUCK!!!

Rick