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EBRT planning conundrum

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User
Posted 13 Jul 2024 at 15:51

Hi all, appreciate any advice on the below. I’m G9 with local spread diagnosed Dec 23 responding well to front loaded HT and CT. Last CT session is this Monday. Presenting PSA 31 down to 0.24 as of yesterday. 

My Oncologist had consented me for RT post CT to the prostate, 2 x very small pelvic wall lymph nodes and 2 very small pelvis bone hotspots. He’s treating me with curative/radical intent although I am incurable. 

He changed the plan yesterday after speaking with colleagues advising me only the prostate would be radiated. Risk of bowel toxicity if he hits the lymph nodes and risk of insufficiency fracture with the bones was his reasoning. 

He explained I could potentially have chronic bone pain if a bone fractures and difficulty walking, reduced quality of life etc. He said you’re currently asymptomatic and play tennis, run, working, really active, what would life look like if you couldn’t do that post RT? Potential bowel issues requiring a stoma bag etc- how would quality of life look?

He showed me recent bone/CT scans comparing to my initial PSMA PET and said he said everything’s shrunk and could barely see the lymph nodes. 

My issue is that I want to hit/smash/kill as much of the cancer as possible to prevent recurrence regardless of whether it’s detectable on a scan or not. I feel like I’ve suddenly been switched to a non-curative pathway (but I know I can’t be cured-weird I know). Equally I understand the quality of life point and going from hero to zero activity wise would be very difficult to deal with especially being unable to play/wrestle with my two 7 and 8 year old boys.

Has anyone been faced with this issue. I’ve re-consented to just the prostate RT in mid August but am agonising about the decision. All feedback appreciated. 

User
Posted 14 Jul 2024 at 17:46

Originally Posted by: Online Community Member
Andy thanks for the advice. When you say on the edge and not run of the mill do you mean the spread, response to treatment or my age etc? I think you’re absolutely right that a second opinion would be wise although the delay would likely be significant.

Several aspects - the disease staging and your young age, difficulty safely targeting the mets.

The main treatment/research centres will have seen more cases like this than a district general hospital, and are more likely to have oncologists who can think outside the standard treatment protocols when they see a special case, and any specialist equipment required. If you're going for a second opinion, I would try to get that from one of these centres, such as Royal Marsden, UCLH, Mount Vernon, Imperial. Unfortunately, I don't know the centres near to you.

User
Posted 14 Jul 2024 at 18:15

 

 

Edited by member 15 Jul 2024 at 12:33  | Reason: Missed the persons name out

User
Posted 14 Jul 2024 at 18:45

Hi Chris,

I like Dr Kwon as well really informative. You could well be right with the eligibility criteria and number of hotspots. The Oncologist said that one of the bone mets was in a technically very difficult place to radiate (pubic rami very bottomand back of  the pelvis) but that the others were not. I asked about ‘spacers’ and at my Trust they’re just isn’t funding for them. I know there are other threads that cover this and mixed outcomes with their use. 

Really good your lymph nodes have shown no activity. I just view the lymph system as the superhighway to the whole body so want them blasted!! I know I’m being a bit reductive there and there are risks and that not everyone is in a position to have them even considered to be radiated. I do count myself lucky in that respect.

Hopefully your PSA rise is at a glacial pace. Fingers crossed for you.

Andy I’ve PM’d you, thanks for your response. 

Roger that I appreciate your comments as well and hope any micromets stay well and truly dormant. 

User
Posted 15 Jul 2024 at 13:27

Hi Darren,

Im glad I was able to offer you some support. I can’t speak for others but I find it also helps me knowing that I can help others who are struggling when diagnosed. I made 2 big mistakes mistakes when I was diagnosed.

1. Not joining this forum
2. Saying to my wife that Maggies was not for me.

It took me 6 months to realise my mistakes, and by putting my big boy pants on and trying them I was able to transform the way I deal with this disease. And part of that now is helping others going through the same trauma as I did. Most men stop going to Maggies when there treatment is over but I think I have something to offer to others recently diagnosed, and last Fridays meeting was a very good example of this.

With regards to them wanting to give me 37 sessions, I think the feeling was that with my staging there was a chance that it might have spread to other places but not being picked up by any of the tests. They gave me the choice at first and I chose that route thinking ‘let’s give this bloody thing everything they can’. I was somewhat disappointed when they told me the day before treatment started that it wasn’t going to happen. My Onco is not the most empathetic character, but I am thankful that he is a good Onco and did his job. He felt that the risk of collateral damage was far greater than the risk of not getting everything. I do have to live with the fact that only when my testosterone comes back and I begin to feel like a man again will I know that everything is good. I deal with this by living for today, having as much fun as possible….and lots of holidays.😊

As for my scans I have not had any scans since finishing RT, my PSA has dropped from 0.9 at the start of RT to <0.1, so undetectable now for 6 months. That’s why the Onco agreed that I could stop HT early. I’m happy with the way things have turned out and I see my Onco on 4th October just after my first PSA since stopping HT. I will just need to wait and see what he says and keep positive that everything will be good.

Onwards and downwards(PSA) is my motto.

Derek

User
Posted 19 Jul 2024 at 15:18

Thanks Derek, good motto to live by that!

As an update I’ve arranged a 2nd opinion with the Royal Marsden to review the treatment plan. If they concur just hitting the prostate with EBRT rather than metastasis directed therapy to the additional low volume bone and lymph spread then it’s a go. Commence bowel prep shortly, the joys! 

Feel hugely reassured just getting the 2nd opinion in place. 

Will update as and when.. off to find a cool place in the house out of this intense heat! 

 

 

User
Posted 04 Sep 2024 at 20:17

Good luck with the RT tomorrow and onwards Darren. Hugely admire your determination to get the treatment that sits best with you.

Properly beside you my man.

 

Jamie.

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User
Posted 13 Jul 2024 at 20:05

Darren. Not quite the same situation. After my second PSMA scan my oncologist talked about collateral damage to organs. He got quite annoyed when I said I was willing to take a risk. He mentioned the SABR treatment putting a hole in the bowel, he painted a very grimm picture of bowel damage including death.

As it turned out I was able to have the SABR treatment but they did have to rewrite the program part way through treatment.

Thanks Chris 

User
Posted 13 Jul 2024 at 21:08

I don't know where you're being treated and I don't know the treatment centres in your part of the country, but you might well benefit from a second opinion at one of the major prostate cancer oncology centres. Your case is on the edge, not run-of-the-mill, and a bleeding edge research oncologist might have more tools up their sleeve and be more experienced in dealing with cases like yours. Even if you aren't curable, zapping the visible cancer at the outset could delay the need for lifetime hormone therapy including an extension to life, and the opportunity for treatments which don't yet exist. Another oncologist might feel they could try that with less risk to your QoL.

Wishing you all the best.

User
Posted 14 Jul 2024 at 07:39

Thanks for this Chris. I hope your treatment was successful and you had minimal side effects. You certainly had some of the more extreme side effects outlined to you. 

Andy thanks for the advice. When you say on the edge and not run of the mill do you mean the spread, response to treatment or my age etc? I think you’re absolutely right that a second opinion would be wise although the delay would likely be significant.

I have a good relationship with my Oncologist but the longer term ramifications of not radiating all the cancer in Oligometastatic disease could impact prognosis. Balancing this with quality of life and potential side effects with durable remission is challenging. 

I plan to speak to my MacMillan nurse tomorrow for further advice and reassurance around the whole thing including having my case reviewed by a clinical oncologist. 

User
Posted 14 Jul 2024 at 12:57

Hi Darren

I experienced something similar ie late change of proposed RT treatment to restrict to prostate only rather than treat the wider area. The explanation given was similar ie couldn’t see the lymph tumours on latest scans and didn’t want to “shoot blind” and cause permanent damage to my bowel. 
I was similarly rather upset that they had taken away this option of wider treatment (there went any hope of a theoretical cure however unlikely)
I was fortunate enough to have a second opinion option through my employer which I had requested previously and I ended up receiving a second opinion report from a specialist in the US who had reviewed all my notes and scans. 
He concurred that the risk was not worth it and that the RT should be used more sparingly. 
2 years on from RT, I’m glad I haven’t suffered any QoL issues as a result.

Best Kevin

 

User
Posted 14 Jul 2024 at 14:11

I had full pelvic radiotherapy in 2022 and haven’t had any major issues so far.

User
Posted 14 Jul 2024 at 17:27

Thanks Kevin. I think your comment really crystallises the thread thats run through my approach to tackling this damn thing (and I suspect others diagnosed as incurable):

’there went any hope of a theoretical cure however unlikely)’.

It’s that thought that if I don’t hit the prostate and all the visible/previously visible mets that recurrence is that much more likely. Difficult to square. 

Very interesting that your 2nd opinion, and one from an Oncologist operating in a totally different healthcare system agreed with the original plan to use RT sparingly. I’m genuinely pleased you haven’t suffered any QOL issues and hope for many years of static PSA results for you.

Roger that (hint of ex-mil there?) thanks for this. Did you have pelvic lymph nodes radiated or any other structure in the pelvis.  Glad to hear you haven’t had any issues either. 

 

User
Posted 14 Jul 2024 at 17:46

Originally Posted by: Online Community Member
Andy thanks for the advice. When you say on the edge and not run of the mill do you mean the spread, response to treatment or my age etc? I think you’re absolutely right that a second opinion would be wise although the delay would likely be significant.

Several aspects - the disease staging and your young age, difficulty safely targeting the mets.

The main treatment/research centres will have seen more cases like this than a district general hospital, and are more likely to have oncologists who can think outside the standard treatment protocols when they see a special case, and any specialist equipment required. If you're going for a second opinion, I would try to get that from one of these centres, such as Royal Marsden, UCLH, Mount Vernon, Imperial. Unfortunately, I don't know the centres near to you.

User
Posted 14 Jul 2024 at 18:15

 

 

Edited by member 15 Jul 2024 at 12:33  | Reason: Missed the persons name out

User
Posted 14 Jul 2024 at 18:33

Darren, one other thing to consider, generally speaking the NHS will only treat 3 hotspots, it "could" be that your oncologist could not get that 4 hotspots approved. I took advantage of my wife's health insurance and moved into the private sector. Without insurance you would need very deep pockets. 

As regards my position,the two previously treated lymph node tumors look to have been successfully treated but my last PSA was 1.4 and the recent PSMA scan could not detect the source, the plan is to wait until the PSA reaches 3 and then scan again.

My oncologist did change his original approach of waiting for the PSA to reach possibly 10, then give HT. 

I am a fan of Dr Kwon in the USA who has done lots of work with Oligometastatic cancer, lots of you tube videos, he also points out some interesting facts about where there cancer is in the body.

Thanks Chris 

 

User
Posted 14 Jul 2024 at 18:45

Hi Chris,

I like Dr Kwon as well really informative. You could well be right with the eligibility criteria and number of hotspots. The Oncologist said that one of the bone mets was in a technically very difficult place to radiate (pubic rami very bottomand back of  the pelvis) but that the others were not. I asked about ‘spacers’ and at my Trust they’re just isn’t funding for them. I know there are other threads that cover this and mixed outcomes with their use. 

Really good your lymph nodes have shown no activity. I just view the lymph system as the superhighway to the whole body so want them blasted!! I know I’m being a bit reductive there and there are risks and that not everyone is in a position to have them even considered to be radiated. I do count myself lucky in that respect.

Hopefully your PSA rise is at a glacial pace. Fingers crossed for you.

Andy I’ve PM’d you, thanks for your response. 

Roger that I appreciate your comments as well and hope any micromets stay well and truly dormant. 

User
Posted 15 Jul 2024 at 06:56

Hi Darren,

My PSA was 36 at diagnosis, T3B  but no sign of spread to lymph nodes. I had a double whammy of disappointment on treatment options.At first I was offered RARP which was my choice, then the MDT changed my staging to T3B and ruled that out. I was then (kind of) pushed towards zapping the pelvic area ‘just in case’. After my CT planning scan, my Onco wasn’t happy with the plan because there was too much risk of collateral damage to the bowel…apparently my plumbing was in the wrong place! They then put it back in the system to come up with a different plan…but he still wasn’t happy, so I ended up with just 20 sessions to the prostate only. It’s hard at times knowing that my number 1 and then number 2 choice of treatments were ruled out, but I comfort myself with the knowledge that my Onco spotted the risk and tried his best but at the end of the day wasn’t willing to risk giving me permanent bowel damage.

I’ve now finished my HT and PSA <0.1 and just getting on with life trying hard not to think of what ‘might’ be ahead.

I wish you all the best.

Derek

User
Posted 15 Jul 2024 at 07:39

Hi Decho,

Before I reply to your response, I wanted to thank you for your kind response to me earlier in the year in January when I was first diagnosed and in that very shocked and numb state. I’ve noticed that there are a core few of you on here who always reply to the newbies and offer your support at that very desperate time during first being diagnosed whatever the cancer staging is. Thank you for this. I’ve found reading about the lived experience of blokes and their partners on here enhances the clinical side of managing this. To that end…

Your RT response  is really helpful. The Oncologists of course will see patients who have life changing side effects post RT impacting bladder, bowel and bone health that we are all warned about but perhaps don’t truly understand what it’s like to live with those side effects. I don’t envy their job and like you say they’re doing their best for us all. They want to kill our cancer but want us to enjoy life as much as possible as well. 

Very interesting they offered you pelvic radiation without spread or a target? Have I understood that right. I think the important bit I’ve taken from your post is the flexibility and subject to change nature of RT planning by the Oncologist. Put simply what you are consented for and agree to may change. Could be related to imaging or newer research or in my case, collaboration with colleagues that influences the Oncologists reasoning.

Also feedback on here shows just how reluctantly (understandably) radiating near the bowel Oncologists are even to potentially kill mets and possibly prognosis. 

Could I ask how your pre and post scans differed after RT to the prostate? I will probably be having the same- 20 sessions to prostate. 

 

 

User
Posted 15 Jul 2024 at 13:27

Hi Darren,

Im glad I was able to offer you some support. I can’t speak for others but I find it also helps me knowing that I can help others who are struggling when diagnosed. I made 2 big mistakes mistakes when I was diagnosed.

1. Not joining this forum
2. Saying to my wife that Maggies was not for me.

It took me 6 months to realise my mistakes, and by putting my big boy pants on and trying them I was able to transform the way I deal with this disease. And part of that now is helping others going through the same trauma as I did. Most men stop going to Maggies when there treatment is over but I think I have something to offer to others recently diagnosed, and last Fridays meeting was a very good example of this.

With regards to them wanting to give me 37 sessions, I think the feeling was that with my staging there was a chance that it might have spread to other places but not being picked up by any of the tests. They gave me the choice at first and I chose that route thinking ‘let’s give this bloody thing everything they can’. I was somewhat disappointed when they told me the day before treatment started that it wasn’t going to happen. My Onco is not the most empathetic character, but I am thankful that he is a good Onco and did his job. He felt that the risk of collateral damage was far greater than the risk of not getting everything. I do have to live with the fact that only when my testosterone comes back and I begin to feel like a man again will I know that everything is good. I deal with this by living for today, having as much fun as possible….and lots of holidays.😊

As for my scans I have not had any scans since finishing RT, my PSA has dropped from 0.9 at the start of RT to <0.1, so undetectable now for 6 months. That’s why the Onco agreed that I could stop HT early. I’m happy with the way things have turned out and I see my Onco on 4th October just after my first PSA since stopping HT. I will just need to wait and see what he says and keep positive that everything will be good.

Onwards and downwards(PSA) is my motto.

Derek

User
Posted 19 Jul 2024 at 15:18

Thanks Derek, good motto to live by that!

As an update I’ve arranged a 2nd opinion with the Royal Marsden to review the treatment plan. If they concur just hitting the prostate with EBRT rather than metastasis directed therapy to the additional low volume bone and lymph spread then it’s a go. Commence bowel prep shortly, the joys! 

Feel hugely reassured just getting the 2nd opinion in place. 

Will update as and when.. off to find a cool place in the house out of this intense heat! 

 

 

User
Posted 04 Sep 2024 at 19:33

Thought I would update this thread. The 2nd opinion at the Royal Marsden concluded that hitting all the metastatic sites was advisable and could be advantageous versus prostate alone.

Interestingly the Professor mentioned Stampede 2 which I had not heard of. 3 treatment arms to it and one of them SABR to all sites in Oliogomets. Very promising study for future treatments. 

I start RT tomorrow and had the plan changed from 20 to 37 sessions over 7-8 weeks. 

I think I’m glad I advocated for myself to get the treatment plan I felt happy with in the end. Fingers crossed for limited/no side effects! 

 

User
Posted 04 Sep 2024 at 20:17

Good luck with the RT tomorrow and onwards Darren. Hugely admire your determination to get the treatment that sits best with you.

Properly beside you my man.

 

Jamie.

 
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