I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

lymph node spread after HIFU

User
Posted 05 Aug 2024 at 13:45

Last year I had HIFU focal therapy for localised cancer, Gleason 4+3, in one small part of my prostate.  Subsequent scans show no residual cancer anywhere in the prostate but a recent PSMA PET scan has found it in 2 pelvic lymph nodes.  (The PET scan was ordered because my PSA had hardly fallen at all from its pre-hifu level of 7.  It's now about 8 and rising.)

A pre-treatment PET scan in late 2022 showed no such lymph node involvement, so the cancer presumably escaped during the few months between then and the HIFU procedure.

I gather from the Scholz videos on Youtube that prostate cancer in lymph nodes is a worse situation than in seminal vesicles etc.  This is because it's cancer on the loose and free to travel, as opposed to just the primary cancer slowly extending itself locally.

I assume I'll now be put on HT, which I'd hoped to avoid.   But I'd still prefer not to be stuck on it for life.  And I  don't want to be told I'm having 'systemic' treatment alone, without targeted action against the 2 specific lymph nodes.   I think they should be zapped with targeted radiotherapy or taken out surgically, additional to the probably inevitable HT.  

I'm awaiting my next appointment with focal registrar (NHS urology dept at London teaching hospital  - I suspect I'll be transferred to Onco).   In the meantime I'd be very grateful for advice from others on my situation, and especially on how to 'navigate' the NHS in order to avoid being stuck on permanent 'systemic' treatment alone, on grounds of my age (mid 70s).  

I've tried looking up NICE guidelines etc, but the guidance on pelvic node involvement seems to relate either to patients BEFORE any treatment, or after prostatectomy.  Whereas my case relates to focal treatment which has successfully given me a cancer-free prostate, but not in time to prevent spread to pelvic nodes.  

User
Posted 05 Aug 2024 at 13:45

Last year I had HIFU focal therapy for localised cancer, Gleason 4+3, in one small part of my prostate.  Subsequent scans show no residual cancer anywhere in the prostate but a recent PSMA PET scan has found it in 2 pelvic lymph nodes.  (The PET scan was ordered because my PSA had hardly fallen at all from its pre-hifu level of 7.  It's now about 8 and rising.)

A pre-treatment PET scan in late 2022 showed no such lymph node involvement, so the cancer presumably escaped during the few months between then and the HIFU procedure.

I gather from the Scholz videos on Youtube that prostate cancer in lymph nodes is a worse situation than in seminal vesicles etc.  This is because it's cancer on the loose and free to travel, as opposed to just the primary cancer slowly extending itself locally.

I assume I'll now be put on HT, which I'd hoped to avoid.   But I'd still prefer not to be stuck on it for life.  And I  don't want to be told I'm having 'systemic' treatment alone, without targeted action against the 2 specific lymph nodes.   I think they should be zapped with targeted radiotherapy or taken out surgically, additional to the probably inevitable HT.  

I'm awaiting my next appointment with focal registrar (NHS urology dept at London teaching hospital  - I suspect I'll be transferred to Onco).   In the meantime I'd be very grateful for advice from others on my situation, and especially on how to 'navigate' the NHS in order to avoid being stuck on permanent 'systemic' treatment alone, on grounds of my age (mid 70s).  

I've tried looking up NICE guidelines etc, but the guidance on pelvic node involvement seems to relate either to patients BEFORE any treatment, or after prostatectomy.  Whereas my case relates to focal treatment which has successfully given me a cancer-free prostate, but not in time to prevent spread to pelvic nodes.  

User
Posted 05 Aug 2024 at 16:12

HO, I have been on a different route so my experience may not be relevant. After surgery and Salvage RT,my PSA continued to rise and I was heading for HT for life. A change of mind by my oncologist meant I had a PSMA scan and SABR treatment to a single pelvic lymph node. The NHS may limit patients to treating a maximum of 3 hot spots. 

My PSA dropped then shot upto around 6. We took advantage of some family health insurance and swapped to the private sector. A second PSMA scan found another pelvic lymph node and that had SABR treatment. My PSA dropped again and then started to rise, my last PSMA scan at 1.4  could not detect the source of the cancer. I now have a four month wait and if the PSA hits 3.0 another scan will be on the cards 

Thanks Chris 

User
Posted 05 Aug 2024 at 21:13

Thank you Chris. If the NHS is willing to promptly irradiate up to 3 nodes, that would be good for me.  

What I don't want is endless further tests and referrals beforehand, giving the cancer ample opportunity to spread further via the lymphatic system.  

As another of those American videos on Youtube says, prostate cancer in pelvic lymph nodes means "the horse is at the stable door" and about to bolt away.

My PSA of 8 (and rising) probably equates to 4 in a man without a prostate.  I still have most of mine, large and troublesome in a non cancerous way, poor flow etc. 

Show Most Thanked Posts
User
Posted 05 Aug 2024 at 16:12

HO, I have been on a different route so my experience may not be relevant. After surgery and Salvage RT,my PSA continued to rise and I was heading for HT for life. A change of mind by my oncologist meant I had a PSMA scan and SABR treatment to a single pelvic lymph node. The NHS may limit patients to treating a maximum of 3 hot spots. 

My PSA dropped then shot upto around 6. We took advantage of some family health insurance and swapped to the private sector. A second PSMA scan found another pelvic lymph node and that had SABR treatment. My PSA dropped again and then started to rise, my last PSMA scan at 1.4  could not detect the source of the cancer. I now have a four month wait and if the PSA hits 3.0 another scan will be on the cards 

Thanks Chris 

User
Posted 05 Aug 2024 at 21:13

Thank you Chris. If the NHS is willing to promptly irradiate up to 3 nodes, that would be good for me.  

What I don't want is endless further tests and referrals beforehand, giving the cancer ample opportunity to spread further via the lymphatic system.  

As another of those American videos on Youtube says, prostate cancer in pelvic lymph nodes means "the horse is at the stable door" and about to bolt away.

My PSA of 8 (and rising) probably equates to 4 in a man without a prostate.  I still have most of mine, large and troublesome in a non cancerous way, poor flow etc. 

User
Posted 05 Aug 2024 at 23:57

OH, because my last PSMA scan did not detect anything,my oncologist suspects that my cancer is now metastatic, with nothing big enough to be seen. He says we need to be having a serious conversation about HT in the not too distant future. I have told him I do not want HT,but I do have a proven track record of changing my mind.

Have you watched any of the Dr Kwon videos he comes up with some interesting figures on where recurrence is found.

Thanks Chris 

 

User
Posted 06 Aug 2024 at 00:48

I'm not in quite the same situation as you are HO but I did have 3 specific lymph nodes targeted by RT as part of my RT prostate treatment, which also included seminal vesicles. As a precautionary measure several other nearby lymph nodes were also irradiated on the basis of being the possible next in line, even though a PSMA PET scan hadn't picked any cancer up in them. In my case it was EBRT from a LINAC machine.

As you say, once the cancer has escaped into the lymph system it can spread relatively quickly. In this situation immediate HT might be a more important step than it would be if the cancer was restricted to  the prostate. You've had a recent PSMA scan so your specialist know where the cancer is, so if you go on HT now, the cancer growth will be put on hold but an oncologist will still know exactly where RT would need to be targeted.

Sorry, I can't help with the NHS but with lymph node spread a quick response is a good idea. Even if you go on to HT now, it doesn't mean you're on it for life and it doesn't prevent you from having RT. I don't know if HT is ok before surgery though.

Jules

Edited by member 06 Aug 2024 at 00:53  | Reason: Not specified

User
Posted 06 Aug 2024 at 07:41

Originally Posted by: Online Community Member

I don't know if HT is ok before surgery though.



Im sure there are some in here who’ve had HT before surgery when there’s been a delay in removing the mothership.

Derek

User
Posted 06 Aug 2024 at 09:40

It may have been me, Derek.

For a period of two months I was on Bical, whilst they were debating my suitability for surgery. I eventually had the op.

I don't think they like to do it because the HT can distort the histology of the removed prostate.

After the op they upgraded my Gleason from 8(4+4) to 9(4+5), noting that it may have been the HT that caused the apparent rise.

I read somewhere that HT can alter the look of cells making them appear more aggressive than they are.

 

Edited by member 06 Aug 2024 at 09:45  | Reason: Additional text

User
Posted 06 Aug 2024 at 11:26

In my case I asked about it and was told that there was no value in doing it if there was only a few weeks to wait for a prostatectomy, but that they might have done it if the wait was expected to be longer, e.g. 6 months+.

 
Forum Jump  
©2024 Prostate Cancer UK