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Second Course of Pelvic Area Radiotherapy - Radiotherapy (EBRT / IMRT / Proton),salvage radiotherapy,Lymph,Hormone therapy (HT / ADT / IMHT),Da Vinci,PSA,Choline PET Scan

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User
Posted 22 Mar 2015 at 09:09
I had a Da Vinci prostatectomy in January 2014. I then had 32 sessions of pelvic area radiotherapy in June and July 2014. As my PSA carried on increasing throughout I was sent for a Choline PET Scan in February this year, which revealed a cluster of cancerous lymph nodes in each side of my pelvic area. I started Bicalutamide hormone therapy tablets at the beginning of this month and was told I'd be on hormone therapy of one sort or another for the rest of my life and when all those stopped working I'd go on to chemo.

My oncologist has said she is now going to try a second lot of radiotherapy, after I've been on the hormones for three months, which will target just the cancerous lymph nodes found on the PET Scan. I will have to continue with the Bicalutamide for two more years after the second course of radiotherapy.

I'm looking for anyone who has had two separate courses of pelvic radiotherapy as everyone I've asked tells me this is not usual. Although that might be right I'm very happy to give it a try because even if it doesn't cure the cancer it might give me a few more years (when I asked last month I was told I had about 7) - I just want to know from someone who's actually had two lots of pelvic radiotherapy what sort of side effects and after effects I'm likely to experience and if they're different (worse?) than with the first course of radiotherapy. Also, did the second lot work for you?

Thanks.

Jim

User
Posted 05 Jul 2015 at 17:12
Hi Dave,

I had my planning session about 3 weeks ago. I was scheduled to start the actual RT on Thursday just gone, but then it was put back until Monday 6/7. Then, 3 days ago the oncologist called me to say they were having trouble getting the planning right for me due to where my cancer was located, particularly on the right side, and also because they had to be careful not to overlap on to the area that was done last year, by too much. I was also told that there's a chance the second lot of RT might not happen.

I feel a bit unsettled by that. I had geared myself up to starting the RT and thought of it as a chance to still be cured. If it can't be done I'm wondering if I might be suitable for Cyberknife instead. It'd be better to have an option.

On the upside the planning session scans showed my cancerous clusters of lymph nodes had reduced a lot in size compared to what was shown in the PET scan done in February. I was told I'm having a good response to the Bicalutamide but, of course, their effect won't last forever.

I hope you have a smoother run getting more RT than I have. I'll post on here when I know for sure if it's going to happen for me.

Cheers

Jim

Edited by member 05 Jul 2015 at 17:13  | Reason: Not specified

User
Posted 08 Jul 2015 at 09:50

 

 Hi Barry and Jim,

 

Saw the oncologist and it seems there are a few options.

(a) Watch and wait to see whether there are further PSA rises.

(b) Hormone Therapy

(c) HT with Cyberknife. Conventional RT was not completely ruled out, but it was way further down the list

Cyberknife will depend on its specialist's recommendation.

Unfortunately it will almost certainly have to be self-funding.

That's the rub, it's very expensive- ball park figures tossed around on the web indicate about £20,000. Thanks to a family member, (who is not wealthy) I could cover that amount. But could I justify the spending? Probably not.

It's not like paying for a 'must have' procedure like RP or RT, how would I feel about making such an outlay and it turned out to have no impact on any future outcome? - slight hypocrisy here as I would have no qualms about NHS forking out that amount !

I realise that I could have the treatment abroad but I would only consider that if there was a considerable cost-saving (say 50%) And then probably only if it were in Western Europe.  Going further afield and to the third world smacks a bit of desperation but that's just a personal point of view. I'd happily be treated in say, Singapore or Japan but their costs would almost certainly be far higher than UK, I believe.

Until I hear back and learn whether Cyberknife is a valid option, it's all hypothetical so I shall have to wait and see.

 

Dave.

Edited by member 08 Jul 2015 at 10:07  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
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User
Posted 05 Jul 2015 at 15:51

Hi Jim,

Just to say that this is the likely path I shall be going down, as a recent PET scan showed evidence of a pelvic lymph node spread.

Although I have been referred to an onco to see if  another course of radiotherapy was possible, I, like you, wasn't sure if it was even possible.

So, although I hope to find out later this week if I am to go down that route, you posting has been very helpful- there really seems to be a lack of information regarding this turn of events.

 I too will to give it a shot as it seems more pro-active than simply having hormone treatment.

Hope your treatment plan is going well,

 

Dave

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 05 Jul 2015 at 17:12
Hi Dave,

I had my planning session about 3 weeks ago. I was scheduled to start the actual RT on Thursday just gone, but then it was put back until Monday 6/7. Then, 3 days ago the oncologist called me to say they were having trouble getting the planning right for me due to where my cancer was located, particularly on the right side, and also because they had to be careful not to overlap on to the area that was done last year, by too much. I was also told that there's a chance the second lot of RT might not happen.

I feel a bit unsettled by that. I had geared myself up to starting the RT and thought of it as a chance to still be cured. If it can't be done I'm wondering if I might be suitable for Cyberknife instead. It'd be better to have an option.

On the upside the planning session scans showed my cancerous clusters of lymph nodes had reduced a lot in size compared to what was shown in the PET scan done in February. I was told I'm having a good response to the Bicalutamide but, of course, their effect won't last forever.

I hope you have a smoother run getting more RT than I have. I'll post on here when I know for sure if it's going to happen for me.

Cheers

Jim

Edited by member 05 Jul 2015 at 17:13  | Reason: Not specified

User
Posted 06 Jul 2015 at 01:35

Hi Jim,

I am also interested to learn whether there is an alternate treatment to HT for a node after RT has been previously been given. Cyberknife is just another way of administering RT. However, Nanoknife uses a series of electrical charge rather than RT which might be a possibility. Unfortunately, it has been little used in the UK and UCLH told me recently that now that they have closed their trial on it, it was currently not available in the UK. When UCLH treat my Prostate with HIFU on 28th July, I will seek opinion on Nanoknife for treating a Node or Nodes and if they think it is suitable. If the answer is yes or quite possibly, I will ask for a suggestion on treating in mainland Europe. If it is possible to have a procedure that will obviate the need for prolonged HT I will seriously consider it. I am very interested to learn what you and Dave can find out.

Barry
User
Posted 08 Jul 2015 at 09:50

 

 Hi Barry and Jim,

 

Saw the oncologist and it seems there are a few options.

(a) Watch and wait to see whether there are further PSA rises.

(b) Hormone Therapy

(c) HT with Cyberknife. Conventional RT was not completely ruled out, but it was way further down the list

Cyberknife will depend on its specialist's recommendation.

Unfortunately it will almost certainly have to be self-funding.

That's the rub, it's very expensive- ball park figures tossed around on the web indicate about £20,000. Thanks to a family member, (who is not wealthy) I could cover that amount. But could I justify the spending? Probably not.

It's not like paying for a 'must have' procedure like RP or RT, how would I feel about making such an outlay and it turned out to have no impact on any future outcome? - slight hypocrisy here as I would have no qualms about NHS forking out that amount !

I realise that I could have the treatment abroad but I would only consider that if there was a considerable cost-saving (say 50%) And then probably only if it were in Western Europe.  Going further afield and to the third world smacks a bit of desperation but that's just a personal point of view. I'd happily be treated in say, Singapore or Japan but their costs would almost certainly be far higher than UK, I believe.

Until I hear back and learn whether Cyberknife is a valid option, it's all hypothetical so I shall have to wait and see.

 

Dave.

Edited by member 08 Jul 2015 at 10:07  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
 
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