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Treatment options for localised cancer

User
Posted 01 Feb 2024 at 09:15

Hi I have just been diagnosed with prostate cancer with a Gleason score of 3 + 4 T2 localised within the prostate. I have been given a choice of surgery or SBRT which is just a 5 day radiotherapy treatment without having to have HT.

just wanting to know if there is any one else had the SBRT course of treatment and their views and recommendations please 

many thanks Dave

Edited by member 01 Feb 2024 at 10:01  | Reason: Not specified

User
Posted 01 Feb 2024 at 09:15

Hi I have just been diagnosed with prostate cancer with a Gleason score of 3 + 4 T2 localised within the prostate. I have been given a choice of surgery or SBRT which is just a 5 day radiotherapy treatment without having to have HT.

just wanting to know if there is any one else had the SBRT course of treatment and their views and recommendations please 

many thanks Dave

Edited by member 01 Feb 2024 at 10:01  | Reason: Not specified

User
Posted 01 Feb 2024 at 10:09

Hi Adrian thanks for the reply and sharing your journey. The dilemma is if I have radiotherapy as my initial treatment and there is a reoccurrence then I can’t then have surgery or further radiotherapy.

hope you don’t mind me asking how was it after surgery? How long did it take you to have control over your bladder.

many thanks Dave

User
Posted 01 Feb 2024 at 10:13

Bear with us Dave.  Yesterday I did a progress report on my journey. I'll attach a link it'll save me typing, which takes me ages.

Edit. Here we go mate.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

I must stress, when I had to decide, that this new reduced visits radiotherapy was not a treatment option. As I said had it been I'd have seriously considered it.

Edited by member 01 Feb 2024 at 10:33  | Reason: Additional text

User
Posted 01 Feb 2024 at 12:11

Thanks for the reply Adrian. I have my pre-operation visit on Monday so have a little bit more time to decide.

best of luck for the future Dave

User
Posted 01 Feb 2024 at 15:56

Originally Posted by: Online Community Member

Hi Adrian thanks for the reply and sharing your journey. The dilemma is if I have radiotherapy as my initial treatment and there is a reoccurrence then I can’t then have surgery or further radiotherapy.

hope you don’t mind me asking how was it after surgery? How long did it take you to have control over your bladder.

many thanks Dave

 

my husband was offered RT no hormones, I asked the oncologist what happens if it returns as surgery isn’t an option. He said he was confident he would cure it. He starts RT on Thursday. 

it’s hard to know what to do for the best, good luck 

 

User
Posted 01 Feb 2024 at 20:32

Hi Dave,

 my diagnosis was similar to yours, though I was on the edge between T2b and T2c. I ended up having the 5 day treatment and I have to say it was a breeze. I had about a week immediately afterwards of wanting to be sure where the nearest loo was, but after that it was straightforward. 

The argument for starting with RP, and keeping RT in reserve as a salvage treatment should it be needed, is frequently aired, and there's a sound logic to it. But equally - since you  are planning for a curative solution-  it makes sense to have as your first treatment the one which is best ( for you) in its own right. As you will have discovered, the hard statistical data doesn't point conclusively towards either of the main treatment strategies, so you have to look inwards, and determine your emotional response to the various options and implications.

Best of luck

User
Posted 01 Feb 2024 at 21:25

Thanks for your reply hope your husband’s treatment goes well 

best wishes Dave

User
Posted 03 Feb 2024 at 20:25
Hi Dave, I am another who would have looked at that 5 session radio with no HT as a very attractive alternative.

As you say, the possibility of salvage RT if PSA rises after surgery is a case for surgery, as is the very sensitive detection of recurrence since PSA should be zero once you don't have a prostate.

But it is a personal decision and you also need to think about side effects. Surgery takes the cancer right out (if everything works and they were right about no spread) but creates a risk of ongoing problems with urinary continence and erectile function - and there will certainly be short term issues. Radio will again have short term effects but functions should largely recover, but there is a long term risk of raised cancer risk in the bladder and colon, and no one enjoys the hormone therapy which has previously been involved. While 5 session RT is too new to have longterm follow up the most modern RT machines should minimise radiation spillover to adjacent organs and I would hope those risks are now less than in the published studies (if you think about it, any study with 10 year follow up has to have used older technology). Your age makes a difference, if you are under 60 you will more likely have good recovery from the trauma of surgery and a theoretical risk 20 years hence is a bigger issue.

There isn't a right answer, you just need to decide what you are happy with yourself. The PCUK resources are very helpful and there are nurses to talk to if that helps.

User
Posted 05 Feb 2024 at 12:24

Hi all,

Recently diagnosed with localised PCa Gleason 3+4. Was deciding between RALP and HIFU having discounted RT because I don’t want to go through HT. 

I have only just found out about five session RT and that’s definitely of interest. To those who have had or been offered this. Which hospital or area are offering it?  I am currently speaking with RFH and UCLH, but have not been offered this option. Also is this the same as Cyberknife?

Edited by member 05 Feb 2024 at 13:11  | Reason: Additional question

User
Posted 05 Feb 2024 at 15:27

Hi Dave,

I had surgery and have never regretted it although I've often wondered if RT would have been better for side effects or certainty of cure.

I was unaware the 5 day RT is being offered as standard and that it's offered without hormones.  The 5 day treatment is very interesting but I'd be wary about having RT without hormones.  It's normally said hormones shrink and weaken the rogue cells making them more susceptible.

I'd want the doctor to explain why only 5 days and why no hormones.

I wouldn't delay treatment to make up my mind, if you get a fast surgery date I think I'd tick that box right away.  Although 5 days RT and no hormones would be great if you are a very low graded risk.  A 4 in your Gleason isn't normally very low but I'd want the doctor to explain that.   You may never be certain it was the right choice.

All the best Peter

p.s. I like to add a caveat that this is just an untrained opinion.

User
Posted 09 Apr 2024 at 12:16

Hi Dave

Sorry to read of your diagnosis.

I was diagnosed with the same gleeson score in Jan 2023 with cancer contained within the prostate. I opted for RARP which I had in March 2023.  I was very luck with my recovery and no side effects at all from the surgery -i put it down to years of keep-fit training lol!

I'm sure you're aware one of the main advantages of surgery is the potential to cure the cancer for good with 1 treatment, that is if you're one of the luck 70% or so that will be cured by the procedure.  I took that chance, but sadly the bugger returned at PSA test (0.051) in December 2023, after 2 three monthly PSA <0.025. So facing RT (with suggested HT which i'm considering whether to have) by June 2024.

In response to your question, i believe it's pot luck re side effect from surgery or any of the treatment for that matter. Also, it's luck whether one will fall in the 'cured' cohort of any of the curative treatment option.  The annoying fact is we don't know for certain until after the treatment.

Good luck.

Eddie

User
Posted 09 Apr 2024 at 15:44

Selected surgery after speaking to various men that had been through it, also looked at various sites and videos including speaking at length to specialist nurses at prostate uk, looked at all the various side effects for both options and also if the surgery wasn’t successful I still have the option of radiotherapy. Therefore made the decision along with my wife that this was the best way forward.

this was my decision however it has to be a personal choice for everyone which is very hard 

cheers Dave

 

 

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User
Posted 01 Feb 2024 at 09:53

Hi Dave,

Welcome to the forum mate. I'm sorry that you've had to find us but glad you have.

I saw recently on the BBC news that they were planning to reduce radiotherapy to just 5 zaps and no HT but thought it would take ages to be introduced.

I took the surgery option, mainly because I hate hospital visits and couldn't face the then 35 visits in 7 weeks radiotherapy they offered.

Had this 5 day treatment been available to me, I'd have probably took it.

User
Posted 01 Feb 2024 at 10:09

Hi Adrian thanks for the reply and sharing your journey. The dilemma is if I have radiotherapy as my initial treatment and there is a reoccurrence then I can’t then have surgery or further radiotherapy.

hope you don’t mind me asking how was it after surgery? How long did it take you to have control over your bladder.

many thanks Dave

User
Posted 01 Feb 2024 at 10:13

Bear with us Dave.  Yesterday I did a progress report on my journey. I'll attach a link it'll save me typing, which takes me ages.

Edit. Here we go mate.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

I must stress, when I had to decide, that this new reduced visits radiotherapy was not a treatment option. As I said had it been I'd have seriously considered it.

Edited by member 01 Feb 2024 at 10:33  | Reason: Additional text

User
Posted 01 Feb 2024 at 12:11

Thanks for the reply Adrian. I have my pre-operation visit on Monday so have a little bit more time to decide.

best of luck for the future Dave

User
Posted 01 Feb 2024 at 15:13

I think 5 sessions of  RT without HT makes it a far more attractive option than 20 session with up to 3 years of HT,   and will make it a more difficult decision between that and surgery. I’m not sure if the side effects of only having 5 session of very high dosage will be worse,  but for me the RT was a breeze, the HT on the other hand has been horrible😟

Yes, if you have recurrence after RT then your options are limited but who knows what treatments will be available in the future.

All the best with your decision.

Derek

User
Posted 01 Feb 2024 at 15:43

Dear DM,
there isn't one 100% right answer about your question.
One of the advantages of RARP is that, after the operation, they can indeed confim with a greater level of precision if it is fully localized or not and they can also confirm the exact Gleason score.
All the prostate is analyzed and it can happen there is a change from the results of the biopsy which gives you a more accurate picture of the situation and the risk of recurrence. If you read the experience in the forum there is oftern a gap between the results of the biopsy and the findings of the pathology report.
Also RARP as secondary treatment in case of recurrence seems to have wider side effects, especially in terms of incontinence.
My advise is to consult with your Doctors and ask in details pros and cons of each option and then take a decision. Here we are just normal people that can just share their views and experience
Good Luck,

User
Posted 01 Feb 2024 at 15:56

Originally Posted by: Online Community Member

Hi Adrian thanks for the reply and sharing your journey. The dilemma is if I have radiotherapy as my initial treatment and there is a reoccurrence then I can’t then have surgery or further radiotherapy.

hope you don’t mind me asking how was it after surgery? How long did it take you to have control over your bladder.

many thanks Dave

 

my husband was offered RT no hormones, I asked the oncologist what happens if it returns as surgery isn’t an option. He said he was confident he would cure it. He starts RT on Thursday. 

it’s hard to know what to do for the best, good luck 

 

User
Posted 01 Feb 2024 at 20:32

Hi Dave,

 my diagnosis was similar to yours, though I was on the edge between T2b and T2c. I ended up having the 5 day treatment and I have to say it was a breeze. I had about a week immediately afterwards of wanting to be sure where the nearest loo was, but after that it was straightforward. 

The argument for starting with RP, and keeping RT in reserve as a salvage treatment should it be needed, is frequently aired, and there's a sound logic to it. But equally - since you  are planning for a curative solution-  it makes sense to have as your first treatment the one which is best ( for you) in its own right. As you will have discovered, the hard statistical data doesn't point conclusively towards either of the main treatment strategies, so you have to look inwards, and determine your emotional response to the various options and implications.

Best of luck

User
Posted 01 Feb 2024 at 21:23

Thanks for sharing your journey really appreciated it

best wishes for the future Dave

User
Posted 01 Feb 2024 at 21:25

Thanks for your reply hope your husband’s treatment goes well 

best wishes Dave

User
Posted 01 Feb 2024 at 22:29

All treatments have their pros and cons and work better for some than others making it difficult for a man to decide what MIGHT prove best for him. If a man is opposed to having surgery or radiotherapy and maybe the potential side effects of these treatments, there is another possibility where the cancer is found early and is quite limited and contained within the Prostate is to ascertain from a Focal Specialist whether he is suitable for one of the Focal Treatments such as HIFU, Cryotherapy Nanoknife (Electroporation). These generally have less severe side effects but there is more chance that a Focal Treatment will need to be retreated with a form of Focal therapy or in a few cases with RT or Surgery if it's too big a job for Focal Treatment. Essentially, you are swapping risks. Take a look at the Tool Kit' produced by this Charity which details about various treatments among other things.

https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

 

Edited by member 01 Feb 2024 at 22:30  | Reason: to highlight link

Barry
User
Posted 03 Feb 2024 at 20:25
Hi Dave, I am another who would have looked at that 5 session radio with no HT as a very attractive alternative.

As you say, the possibility of salvage RT if PSA rises after surgery is a case for surgery, as is the very sensitive detection of recurrence since PSA should be zero once you don't have a prostate.

But it is a personal decision and you also need to think about side effects. Surgery takes the cancer right out (if everything works and they were right about no spread) but creates a risk of ongoing problems with urinary continence and erectile function - and there will certainly be short term issues. Radio will again have short term effects but functions should largely recover, but there is a long term risk of raised cancer risk in the bladder and colon, and no one enjoys the hormone therapy which has previously been involved. While 5 session RT is too new to have longterm follow up the most modern RT machines should minimise radiation spillover to adjacent organs and I would hope those risks are now less than in the published studies (if you think about it, any study with 10 year follow up has to have used older technology). Your age makes a difference, if you are under 60 you will more likely have good recovery from the trauma of surgery and a theoretical risk 20 years hence is a bigger issue.

There isn't a right answer, you just need to decide what you are happy with yourself. The PCUK resources are very helpful and there are nurses to talk to if that helps.

User
Posted 03 Feb 2024 at 21:42

Thanks for your reply 

Best of luck to you and your husband hope everything works out 

User
Posted 05 Feb 2024 at 12:24

Hi all,

Recently diagnosed with localised PCa Gleason 3+4. Was deciding between RALP and HIFU having discounted RT because I don’t want to go through HT. 

I have only just found out about five session RT and that’s definitely of interest. To those who have had or been offered this. Which hospital or area are offering it?  I am currently speaking with RFH and UCLH, but have not been offered this option. Also is this the same as Cyberknife?

Edited by member 05 Feb 2024 at 13:11  | Reason: Additional question

User
Posted 05 Feb 2024 at 15:27

Hi Dave,

I had surgery and have never regretted it although I've often wondered if RT would have been better for side effects or certainty of cure.

I was unaware the 5 day RT is being offered as standard and that it's offered without hormones.  The 5 day treatment is very interesting but I'd be wary about having RT without hormones.  It's normally said hormones shrink and weaken the rogue cells making them more susceptible.

I'd want the doctor to explain why only 5 days and why no hormones.

I wouldn't delay treatment to make up my mind, if you get a fast surgery date I think I'd tick that box right away.  Although 5 days RT and no hormones would be great if you are a very low graded risk.  A 4 in your Gleason isn't normally very low but I'd want the doctor to explain that.   You may never be certain it was the right choice.

All the best Peter

p.s. I like to add a caveat that this is just an untrained opinion.

User
Posted 05 Feb 2024 at 16:49

Hi MO

I live in Newcastle and the 5 day treatment is being offered at the Newcastle freeman hospital along with a couple of London hospitals as I understand

the 5 day is exactly like the normal external beam radiotherapy but gives a stronger beam therefore only 5 needed 

Cheers Dave

User
Posted 09 Apr 2024 at 12:16

Hi Dave

Sorry to read of your diagnosis.

I was diagnosed with the same gleeson score in Jan 2023 with cancer contained within the prostate. I opted for RARP which I had in March 2023.  I was very luck with my recovery and no side effects at all from the surgery -i put it down to years of keep-fit training lol!

I'm sure you're aware one of the main advantages of surgery is the potential to cure the cancer for good with 1 treatment, that is if you're one of the luck 70% or so that will be cured by the procedure.  I took that chance, but sadly the bugger returned at PSA test (0.051) in December 2023, after 2 three monthly PSA <0.025. So facing RT (with suggested HT which i'm considering whether to have) by June 2024.

In response to your question, i believe it's pot luck re side effect from surgery or any of the treatment for that matter. Also, it's luck whether one will fall in the 'cured' cohort of any of the curative treatment option.  The annoying fact is we don't know for certain until after the treatment.

Good luck.

Eddie

User
Posted 09 Apr 2024 at 12:52

Hi I opted to have surgery which was carried out on 22 March which went well.

i have just had the catheter removed along with the staples last Friday and fingers crossed all is going fine with just a few small leaks now and then. The surgeon advised he was able to save the nerves so hopefully should be somewhat back to normal in a few months time 🤞

many thanks Dave

User
Posted 09 Apr 2024 at 13:04

Originally Posted by: Online Community Member

Hi I opted to have surgery which was carried out on 22 March which went well.

i have just had the catheter removed along with the staples last Friday and fingers crossed all is going fine with just a few small leaks now and then. The surgeon advised he was able to save the nerves so hopefully should be somewhat back to normal in a few months time 🤞

many thanks Dave

Hi Dave,

Great to hear from you again. I'm very pleased that your op was successful. To have so little incontinence so early is excellent. 

Do you mind sharing why you elected surgery?

Edited by member 09 Apr 2024 at 13:09  | Reason: Typo

User
Posted 09 Apr 2024 at 14:00

Good to hear surgery went well Dave.  Fingers crossed that's it for your Pca!

BW.

User
Posted 09 Apr 2024 at 15:44

Selected surgery after speaking to various men that had been through it, also looked at various sites and videos including speaking at length to specialist nurses at prostate uk, looked at all the various side effects for both options and also if the surgery wasn’t successful I still have the option of radiotherapy. Therefore made the decision along with my wife that this was the best way forward.

this was my decision however it has to be a personal choice for everyone which is very hard 

cheers Dave

 

 

 
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