I've not posted in so long I cant find my last thread - advice please!

Hi All

I've not been on the forum much for some months now what with covid ...not to mention I've had elderly relations who have been poorly so apologies for just turning up and asking advice- again! I am in the UK but my husband is going privately for this treatment and does not want to google or read anything about cancer as he is very anxious about health issues so its always up to me to do the research. I'll copy the history below as I cant find my thread from last year:

Husband diagnosed with Prostate Cancer January 2020.
PSA October 2019: 86
PSA January 2020: 94
Gleason 4 + 3, T2c No Mo
MRI, Choline PET scan appear to show no spread outside of prostate
Robotic Prostatectomy February 2021.
Pathology:
acinar adenocarcinoma involving the 90% prostate.
Bladder neck invasion: NO
Lymphovascular invasion: YES
Perineural invasion: YES
Seminal vesical invasion: YES
Base margin involved
Gleason 4 + 3; pT3b; pnx Grade 3 cancer

PSA May 2020 12 weeks after op: 1.5
PSA June 2020: 2.0
Gallium PSMA PET scan this time shows one pelvic lymph node with cancer so and bones clear:
33 Radiotherapy sessions June 2021
PSA October 2020: 0.2
PSA January 2021: 0.5
PSA March 2021: 0.8
PSA May 2021: 1.1
PSMA Gallium Scan May 2021

The Consultant has rung today to say the Scan showed no lesions and that the treated area plus lymph node were now all clear so although this is good news it does raise questions as to why the PSA is rising with a doubling rate of 4 months. He suggested another blood test in September then an appointment to discuss the results.

I do know that none of you are Doctors or Consultants but I really appreciate your views. We've been told this is a slow growing, non aggressive cancer so does this slow rise in the PSA mean that there could be micro mets somewhere and they will become visible under a scan at some point in the future ??? The Consultant did mention using SABR to treat any spots if they showed up in the scan.

Thank you !

Currant Cottage

Duck2 said...
The scan can not reveal very small spots of cancer and PSA is a sum of all the cancer. It is likely he has several undetectable spots contributing to his PSA sum.

Thank you - its what I'm thinking too. The Consultant we have now is never very forthcoming about anything, he's very careful not to say anything whether positive or negative except when pushed by my husband will say "yes we are still look at a cure rather than control" whereas the previous Consultant who did the surgery was totally different - very friendly, chatty, went into great detail. My husband is so excited that his scan is clear that he has gone out for a run in his work lunchbreak and wants to go out and celebrate with his friends. I'm an optimistic sort but also a realist and like to know the detail of things and understand what's going on - so while he's running, I'm googling !!!

Right I think I need to take my dog for a walk and stop reading umpteen medical research papers ...I've not been like this since his initial diagnosis last year !!

Thank you again for reply.

Currant Cottage

DjinTonic said...
Hi CC. Two questions. By "pnx" I assume his post-RP path was pT3a N0 (no positive nodes). How many were removed and examined? Do you know if the adjuvant RT was to the whole pelvis, or narrower? (The persistant PSA alone would have indicated the advisability of ART even if no nodes had been visualized.).

Options for further treament will require knowing the location(s) of the lesion(s).

Djin

Hi !
You're right his post-RP was pT3a NO and no nodes were removed or tested ...there was a complicated reason the Consultant gave ...think it was to do with the possibility of lympodema in the area and he said that given the choice himself he would leave them intact. The one pelvic lymph node with cancer was discovered on a scan after the surgery he had to determine why the PSA hadn't dropped to zero. So when he had his radiotherapy it was to the whole pelvic area with a low amount and a higher amount to the pelvic lymph node in question. Sorry - not very technical of me but I hope that makes sense. I guess its just a wait now till the PSA gets high enough to show up on a scan !

DjinTonic said...
You explained it well. I had a hunch about either no nodes or a very small number being taken. I assume there was some drainage problem in the area (?) -- lymphedema is usually a complication of a large number of nodes being during RPs for high-Gleason disease, not the relatively small number usually taken for intermediate risk, e.g., my surgeon removed 16 based on my G10 biopsy and imaging suggesting prostate confinement. I had no drainage problems. I would have thought that (pelvic) mets would have been an initial consideration given his PSA well above 20.

I don't know if "low dose" means it was lower than the SOC adjuvant dose for persistent PSA, but my layman's thinking is that re-irradiation of the pelvis might be possible if more nodes turn up there, and if there are non-local nodes, it would be time for ADT.

Djin

I've always felt that the surgeon should have taken all the pelvic nodes - given the high PSA but he thought it was contained (although how it could be given the PSA was quite high) - my husband got on really well with the consultant so was happy to go with his recommendation.

Back to it being a waiting game for the PSA to get high enough to re scan !!!

Thank you again - I do appreciate being able to come here and ask advice - it kind of gets my head straight about it all !!!

Here's a link to your old thread:
https://www.healingwell.com/community/default.aspx?f=35&m=4188829

As an aside, you are doing a great job staying on top of what is going on with your husband and figuring out what the best course of action is.

Sr Sailor said...
Here's a link to your old thread:
https://www.healingwell.com/community/default.aspx?f=35&m=4188829

As an aside, you are doing a great job staying on top of what is going on with your husband and figuring out what the best course of action is.

Thank you Sr Sailor for being so kind and encouraging and also for posting the thread link - I'm rather slow at forums and hunting stuff up - bit like a needle in a haystack for me !!!!

Hello, Currant Cottage ~~~

I am thankful for your update, and always follow your posts. I remember you are posting from England, and always so thankful that this website has a GLOBAL readership!

I am thankful you are staying vigilant, and staying on top of things.

Like me, your husband had a high PSA at the time of his diagnosis, so it's important to stay closely connected to your medical team.

Each case is different, but I see my oncologist every month. I visit the lab in advance, so that all lab results are processed before I see my oncologist.

about twice a year, I travel to Mayo Clinic, for follow-up scans, to stay on top of my case. My treatment history is shown below my signature, at the end of this post.

You mentioned your current consultant "isn't very forthcoming" with thoughts, observations, and next-step plans.

I saw one doctor who was like that, and after three visits in a row with him, I knew I needed a doctor who was more forthcoming ---- and who embraced the belief in TEAMWORK with my other doctors --- and with me.

Looking out for you, and wanting the best for you ---- make certain you have a top-notch oncologist who is also a good "fit" for your husband and his case.

Like me, your husband's got a case with some complexities, and you need a doctor who will "drill down" in conversations with you --- and take a very proactive approach.

My oncologist KNOWS that I will always ask a few direct questions, even when good news has been shared, and we always "make a plan" TOGETHER for what will be included in my next consultation.

My doctor is ALWAYS thinking ahead --- and so am I --- and that's an important mindset for cases with some complexities.

One more thought --- just being proactive ---- you are already concerned about rising PSA following treatments --- it's still May right now.

Would there be any merit in running some quick labs in perhaps July, rather than waiting until this fall, in September?

A quick run to the lab in the middle of the summer might help build data, and confirm PSA stability or rising PSA trends, whatever the case may be. It's to your advantage to stay on top of things, and ask for a mid-summer lab check.

Just a thought to consider ------ wanting all the best for you and your husband, & looking forward to the future.

I was SO thankful to see your post and update. I have thought of you both, many times, in the past few months.

We're all in this together, and I will watch for your future posts, as we all look ahead to the summer season that is just beginning.

With all my best, from across the miles ~~~
CYCLONE ~~~ # Iowa State University

Hello, Currant Cottage ----

It was good to read your update.

Yes, your husband has everything to gain by visiting the lab on a consistent basis. That way, your husband's medical team can track any trends in lab work that might need attention.

You've got some concerns, as stated in your posts, and staying proactive is to your husband's advantage.

In my case, I prefer discussing all lab results in person with my main oncologist. That way I can ask questions ---- and he can provide insight, recommendations, and context.

As in my case, your husband had a high PSA at diagnosis, so it's important to remain vigilant.

You're right when you state that having a proactive medical team is reassuring to me. I'm doing all I can to maintain my health goals --- and they're looking after my case in all ways possible.

Summertime is here --- I hope you & your husband are doing well.

I always follow your posts --- keep us updated, as time allows!

With my very best, from across the miles, to you both in England!

CYCLONE ~~~ # Iowa State University