Is this a rare event?

[arizonablue]

Diagnosed in 2006, Gleason 7, failed surgery, failed salvage radiation by beginning of 2007.

Saw Tanya Dorff in USC and was put on triple hormone therapy with 90 day lupron. and Casodex and Avodart

Dorff believed in intermittent therapy and was i was given a holiday from treatment if psa and testosterone were hormone sensitive between 9 months to a year until psa started its climb.

Long story short I have been on hormone therapy ever since with the one exception of changing from Casodex to Zytiga without ever failing Casodex.

Moved from Phoenix to New Hampshire and with Dorff's help she got me into Dana Farber to see Dr Taplin. Since then Taplin has resumed the same intermittent hormone therapy, always a break from treatment between 9 months to a year. Once psa climbed to over 2.0 she sent me an Axumin scan and as of the middle of 2022 this regimen continued to work.

In June 2022 I developed sciatica symptoms which affected my right buttock, thigh, and calf to the extent I was sent for MRI to make sure, nothing showed up except a slight slippage of my upper and lower spine. It was a grade one slippage so not enough of compression of the nerve to warrant surgery. Sent to pain clinic for cortisone injections into L4/5 and S1, did not work. By now pain had left the calf and completely focused its attention on my right foot, the pain at times was excruciating leaving me unable to walk without a limp, unable to stand for more then 10-20 minutes.

Back to neurosurgeon and he ordered another mri with and without contrast but to take in the very lower part of the spine. This revealed what the radiologist thought was sheath lesion between S1 and S2. The neuro surgeon in New Hampshire determined it was too complicated for him to treat. He referred me to a very well know neuro surgeon at Brigham and Women's hospital main campus.

By now it was the end of November and my labs were due as I was in remission from PC treatment, reading was <0.02. By now Dr Taplin and the neuro surgeon at Brigham thought a PSMA scan would completely rule out PC. I saw Dr Taplin after the labs showed <0.02 and her opinion was it would be extremely unlikely this was PC, but she ordered the scan with her warning me that it was really unlikely to be approved by my medicare supplemental insurance company.

While waiting for said approval my neuro surgeon started the process of a guided image biopsy of the tumor. One hour after he spoke to me about this I got a call from Dana Faber informing me that my insurance was going to cover this scan, I just couldn't believe it considering an undetectable psa of<0.02.

Yesterday I had the scan which within 2 hours of the scan being done I received a phone from Taplin informing me that this tumor was indeed PC.

I am writing this long message because Taplin said that it could happen but in all her years this would be considered very rare. So since 2007 triple hormone therapy has always worked and while on my regular treatment vacation this happened with a psa score of less than 0.02.

I just thought that I should share this with you, sorry its so long

[PSAed]

No apologies necessary, thank you for sharing . I suspect the brains on here will have some valuable input with an explanation on your experience regarding progression while showing a consistent low PSA. At a guess I'd say it would be treating the PSA and not the cancer, but I'll follow this topic to learn what the experts here have to say. In any event best wishes to you. Note, I do not have any expertise on the matter!

[tango65]

ADT plus abiraterone failed to control the cancer. The cancer is mCRPC.

Having failed one of the new anti androgens the next step most probable should be chemotherapy or if you could get approval, Lu 177 PSMA treatment.

Do you know what the SUV value of this lesions is? I ask because cancer with low PSA expression usually do not express PSMA.

You should discuss getting the biopsy done and request histological, IHC and genomic studies.. These studies could identify characteristics in the cancer which make the cancer susceptible to treatment with olaparib, rucaparib, keytruda, or chemo with platinum compounds or similar drugs.

At this time you could request treatment with Provenge a vaccine shown to prolong life in mCRPC.

[Hidden]

I hear of alot of guys using radiation to shrink tumors to relieve pain. Can you do that?

[TWTJr]

I would save LU 177 for later. Consider SBRT to the lesion.

[Shorehousejam]

I would definitely put your post in your bio, much easier to respond, when history is presented .

Thank you for posting and sharing it here.

Are you Gleason 7 3+4 as you may not express a lot of psa with a 4, deeming Ductal, Intraductal or Cribform architecture, nasty little sneaky cancer

Have you had Germaine for BRCA 1/2

and

Genomic sequencing testing?

For Immunotherapy options?

[arizonablue]

Thank you all for your replies, its much appreciated.

It seems on Monday that Taplin will discuss with Dr Huang the neuro surgeon at Brigham and see if the guided image biopsy is still required for the coming Friday. She is also contacting the radiation people at Dana Faber to go over options on radiation treatment. Right now she called in a prescription last Friday night to my pharmacy in NH and put me on Dexamethasone and Zytiga starting that same night.

When I first met with Dr Huang he told me that a conference of Oncologists and radiation oncologists, along with Neuro surgeons had all looked at this tumor and nobody had seen anything like this before.

This tumor is inoperable due to the nerves down there that are entwined around the tumor. I have had genome sequencing and no discovery of Brac1/2, also the other question was if the Gleason at diagnosis was a 3-4 or a 4-3. It was a 3-4.

What is strange about this event is that the pain has now subsided and seems to be improving day by day, go figure!!

[ctflatlander]

Welcome to New England. I'm in Vt, have MCRPC, and we have a Prostate Support Group that functions out of Dartmouth, Lebanon NH if interested.

[arizonablue in reply to ctflatlander]

Thanks mate,but Lebanon is a little to far for me at this time, also I am not driving right now due to the numbness in my right foot. My wife is doing all the hard work right now.👍👍

[ADTMan]

There is a Youtube video from the Mayo Clinic where a patient had PCa on his sciatic nerve. It is well known that PCa can move along nerve pathways. This is mentioned in the literature. The video actually shows the operation. The patient had the same symptoms. I was very interested in this because before I was diagnosed I had to sleep in a separate bed because of left buttock pain at night. Pain symptoms were alleviated by exercise not increased with exercise as would be expected with a back problem. Search for this: Fluciclovine F-18 PET-CT imaging findings of sacral and sciatic nerve perineural invasion in prostate cancer.

[Papillon2]

Thnx.