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Proton Beam?

User
Posted 25 Jul 2019 at 23:13

Hi. I was diagnosed in May’19. Gleason score 3+4=7. Staging T3a. 

the treatment recommended by the urology consultant was hormone therapy, followed by HDR Brachytherapy, followed by four weeks of external beam radiotherapy, and I started the hormone treatment about a month ago.

I have not seen the oncology consultant to whom I’ve been referred yet because she is on holiday but I feel like I haven’t had a full conversation about the other treatment options.

I have been hearing a lot lately about Proton Beam Therapy and the Rutherford centre and would appreciate people’s thoughts.   

User
Posted 26 Jul 2019 at 01:25
I don’t think you’ll get anywhere near a proton beam on the NHS, in one of only two or three places in Britain that have a machine, as its use is usually confined to brain cancers.

Best of luck.

Cheers, John.

User
Posted 26 Jul 2019 at 01:41
Proton beam is looking like an exciting contender as a salvage treatment when radical treatment has failed; we have a couple of members who have travelled overseas for it. But the trial results as a primary treatment for prostate cancer have been very disappointing. As Bollinge says, Proton beam therapy is available in England only for hard to treat cancers such as ocular, head and neck cancers or for children who find external beam RT too difficult.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2019 at 06:50

As T3a, the cancer has broken out of your prostate, which means prostatectomy alone can't cure it, so you would need radiotherapy in any case. You probably will benefit from the entry/exit wounds of the external beam RT, because those help to mop up micromets (spread that's too small to see on scans) near the prostate. The radiotherapy will be directed at pelvic lymph nodes too in some cases, certainly if any spread there is seen (you haven't said), and also if they think there's a chance there might be micromets in them. This is variously called "whole pelvis radiotherapy" (although that means something else to radiographers), or "prostate and nodes".

I'm not telling you to have that course of treatment - you should discuss options with your oncologist, but given what you've said (which is not complete, missing PSA results/dates, nodes and bone scan results), it is probably the best treatment available at the moment. You might also be offered chemotherapy which can further improve outcomes in some cases, at the cost of more initial discomfort and the risk of some permanent chemo damage to your body.

I am on the same path as you, 2/3rds through my EBRT, to be followed by HDR Brachytherapy (the order doesn't matter). This is becoming a common choice for what's referred to as high risk patients, i.e. T3 or more, or PSA > 20, or Gleason >= 8, as the trials which started well over 10 years ago have had good outcomes.

You didn't say what your PSA was before treatment. Mine was 57. I put off the RT until my PSA dropped to 0.1 on HT, because this also has been found to improve outcomes. (Actually, I was down do 0.18 when the RT was booked and 0.12 when it started, but that was near enough - they were originally going to start it when I was around 5.) Not everyone will be able to get it that low, but whilst the rate of decrease is high, it's probably worth waiting longer before starting the RT.

User
Posted 26 Jul 2019 at 07:46

''As T3a, the cancer has broken out of your prostate, which means prostatectomy alone can't cure it, so you would need radiotherapy in any case."

Hi

I was gleeson 3+4 T2c which was upgraded to T3a post RP and path examination. Nerve sparing one side only was decided pre op. T3a was due to extracapsular extension. PSA has been undetectable since so no Adjuvant RT. The op was Jan 17.

I know it's slightly different because I started at DX of T2c but I thought worth a mention for others

 

Good luck

Cheers

Bill

Edited by member 26 Jul 2019 at 07:49  | Reason: Added info

User
Posted 26 Jul 2019 at 08:16
I should have mentioned that my PSA was 14 and, although graded T3a the urologist said that it had not yet broken out but gave it that grade because it was on the verge of doing so.
User
Posted 26 Jul 2019 at 08:51
Andy62 you are simply wrong when you state T3A is not "curable" with prostatectomy.

Selection criteria for T3a prostatectomy are well established and biochemical recurrence when the criteria are used are similar to T2 cancers.

User
Posted 26 Jul 2019 at 09:38

Kevin, I am similar treatment plan to you, except mine is nearly finished.

G9, PSA 27 and T3b , spread into seminal vesicles as is common. 

HT started in Jan ‘18 , HD Brachy in July and followed by RT 23 sessions. Just 5 mins ago had my penultimate Prostap injection. Last in October. PSA at last count 0.08 so fingers crossed.

The HT is a bit of a mine field for most but it does a job. Look up my previous posts to see my troubles with HT.

I will be looking over my shoulder for years to come but at least I’m alive.

Seems to be becoming the most used treatment plan ......

Good luck on your journey.

Phil

User
Posted 26 Jul 2019 at 10:27

Originally Posted by: Online Community Member
Andy62 you are simply wrong when you state T3A is not "curable" with prostatectomy.

Selection criteria for T3a prostatectomy are well established and biochemical recurrence when the criteria are used are similar to T2 cancers.

Thanks francij.

My original hospital don't recommend prostatectomy alone for T3a (i.e you can have it if you really demand it, but they strongly advise against). They will do it as multi-modal (prostatectomy with reduced RT treatment), but then you have both sets of side effects, albeit limited on the RT front compared with just RT treatment.

User
Posted 26 Jul 2019 at 10:42

Firstly can I say that I am totally against limiting treatment options on cost grounds.

This TV program was broadcast earlier this week which I think highlights why Proton Beam is unlikely to become a mainstream treatment option in the near future.

horizon-2019-5-the-250-million-pound-cancer-cure

 

Alan

Edited by member 26 Jul 2019 at 10:43  | Reason: Addition

User
Posted 26 Jul 2019 at 14:02

Kevin sounds like your diagnosis was almost exactly the same as mine. 

I was 58 when diagnosed, no symptoms but showed PSA 14 on a blood test for kidney function. Biopsy came back 70% positive, 100% in left lobe 30% in right. Initial stage reported as T4, but after second scan changed to T3a (thank god or whoever would listen). 

I was recommended by my original Oncologist at Gloucester not to have radical prostatectomy if I wanted a good quality of life after the operation. I am very glad I took his word and shopped around for a different solution and I can only say all the consultants I met and/or talked to from several hospitals were incredible helpful and very honest in their views without trying to "sell" any particular treatment options.

I had 6 months ADT, HDR brachytherapy at Bristol followed by 6 weeks of daily EBRT ( less 2 bank holidays).

Now 3 years post treatment my PSA is 0.1, I feel fit and fine, just get a bit tired late in the afternoon, but on the whole it has been a great success. 

I can only go by my treatment experience but it was almost totally painless, one night in hospital, I was up and about totally pain free 24 hours after being discharged and back to work 3 days later.

User
Posted 27 Jul 2019 at 00:21

Alan,

Couldn't get your link to work. Did you check it does? I think you meant this https://www.bbc.co.uk/iplayer/episode/m00072kd/horizon-2019-5-the-250-million-pound-cancer-cure

Treatment within the NHS  is provided on a cost=benefit assessed basis, funds being limited.  Where patients are prepared  to pay for more exotic treatment, private facilities are more readily found, mostly abroad.  The prime example of this is in the USA.  If we didn't have a NHS in the UK there would almost certainly have been more advanced facilities built privately because of greater demand.  As it is, the Proton beam facility now operational at The Christie in Manchester and the near ready one at UCLH in London are years behind those operating in some other European and further afield countries.  Also, these are only able to treat with Protons whereas some of those abroad  can also treat with Carbon Ions  and potentially other atoms. So the UK is not only late to the party but the two facilities in the UK are limited in what they offer.  The Heidelberg Ionbeam Therapy Center (HIT) in Germany for instance  puts this into perspective as here https://www.youtube.com/watch?v=LeApaY7ctMo

For many years mainly suitable young people with tumors in their head were sent to the USA for Proton Beam treatment because it causes far less collateral damage than Photons but this advantage has not been shown to apply for Prostate Cancer.

 

 

Edited by member 27 Jul 2019 at 01:48  | Reason: Not specified

Barry
User
Posted 27 Jul 2019 at 09:24

Originally Posted by: Online Community Member

Alan,

Couldn't get your link to work. Did you check it does? I think you meant this https://www.bbc.co.uk/iplayer/episode/m00072kd/horizon-2019-5-the-250-million-pound-cancer-cure

Treatment within the NHS  is provided on a cost=benefit assessed basis, funds being limited.  Where patients are prepared  to pay for more exotic treatment, private facilities are more readily found, mostly abroad.  The prime example of this is in the USA.  If we didn't have a NHS in the UK there would almost certainly have been more advanced facilities built privately because of greater demand.  As it is, the Proton beam facility now operational at The Christie in Manchester and the near ready one at UCLH in London are years behind those operating in some other European and further afield countries.  Also, these are only able to treat with Protons whereas some of those abroad  can also treat with Carbon Ions  and potentially other atoms. So the UK is not only late to the party but the two facilities in the UK are limited in what they offer.  The Heidelberg Ionbeam Therapy Center (HIT) in Germany for instance  puts this into perspective as here https://www.youtube.com/watch?v=LeApaY7ctMo

For many years mainly suitable young people with tumors in their head were sent to the USA for Proton Beam treatment because it causes far less collateral damage than Photons but this advantage has not been shown to apply for Prostate Cancer.

 

 

Thanks for sorting out my link. I thought I had only edited the displayed text, but had also edited the actual link.

I wasn't aware of the limitations of our facilities.

Alan 

 
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