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Tips for coping with brachytherapy

User
Posted 13 Nov 2019 at 20:30

My partner Jonathan is having HDR brachytherapy tomorrow. This follows 18 weeks chemotherapy and hormone therapy since January.

Do you have any tips for him for coping with this next treatment?

I find the forum really supportive but hard to find men who are in a similar situation:

Diagnosed Jan 2019. Gleason 5 + 4  and PSA 38

no mri possible but no mets found in CT scan and bone scan clear.

started immediately on Prostap and has now had 6 rounds of docetaxel. 
PSA 0.05

after brachytherapy it’s 5 weeks external beam radiotherapy.

so lovely people - any thoughts/tips etc will be very gratefully received. Thank you

 

User
Posted 14 Nov 2019 at 19:36

Jane

Can't help with your questions, but just bumping you back up the posts, new posts sometimes get "lost".

Thanks Chris

User
Posted 15 Nov 2019 at 11:01

Hi Jane,

I had Brachytherapy seed implant in September 2016 at Mount Vernon and found the procedure a lot better than i was expecting and was in and out hospital in two days and walked out to my car and taken home by my daughter.

All i know about High dose Brachytherapy is that the procedure is the same as the low dose except instead of just putting the seeds in they give you short doses from radioactive probes over a couple of days but you don't have the seeds left in as i did.

I am doing well three years on with my PSA at 0.22 and yearly blood tests.If you click my Avatar it will give you an idea of my progress so far.

 

Regards John,

User
Posted 15 Nov 2019 at 11:18

David had HDR Brachytherapy. He found it a fairly easy process he had one night in hospital and come home the following day. The side effects were minimal, a bit of tiredness and discomfort, but no need for pain relief, he was in the garden pottering about the following day. The RT he found the side effects much more difficult to manage, he also had three years HT. He has been off any treatment now for 17 months and his PSA was 0.2 at his last test. 

User
Posted 15 Nov 2019 at 11:20

He was also Gleason 9 Tb3 locally advanced. Hope it goes well for you.  

User
Posted 15 Nov 2019 at 18:55

Hi Jane,

I had so called 4D Brachytherapy on 7 November at Royal Surrey Guildford as a monotherapy and because we are early stage no other follow up or combination treatment is going to be needed.

To get to the point you ask how to cope with it I was advised the following re risks and side effects plus how to cope in the next year or so:

-the implantation of iodine 125 seeds is permanent and highly targeted;the radioactive isotope has a half life of nearly 60 days so after that it will decline in strength but we will be radioactive until 2021.It is a long process.

-one significant risk/side effect is for the next two months greater urinary symptoms of frequency and being able to urinate perhaps and also the flow may be affected but then it should get better.I was told to drink at least two litres of water a day and to avoid caffeine including decaffinated drinks and only drink redbush tea.It is an idea to measure inputs and outputs and I am doing this for a while to see that I never get dehydrated.

-potency might be reduced by up to 20% so I will be offered Cialis or Viagra on a twice weekly dose just to ensure we do not suffer in this area.

-there might be bruising and bleeding but in my case and also  friends who have had this procedure this was not an issue and no pain was experienced.

-there could be bowel changes but I was given a spacer in the form of gel between the prostate and the bowel to prevent irritation of the bowel;however irritation of the anal area from stray radiation could still be an issue so an anaesthetic cream might be useful.

-exceptionally and in about 5% of cases urinary restriction could be an issue;the prostate does not like to be poked with needles so it swells up to expand around the urethra.I have been offered Tamsulosin 400mg  for the forseeable future to shrink the prostate gland a little. In a minority of cases there is dysuria or inabilty to urinate so catheters are needed either for a period of time or those which one is trained to use oneself.

I am having physio to strengthen the pelvic area and also doing walking to raise strength and the diet is one with lots of fish and plant based foods with few meats or inflammatory foods such as processed items.

I know in your case the Gleeson and the PSA is greater than mine but in my case which is one of early detection the figures of 95% survival after 5 years hopefully will apply.

My complication is that I have been treated for 14 years for chronic myeloid leukaemia so the drug we have used could interact with the internal radiation implants to cause substantial problems for the urethra so we have come of it for a few months as we dont fancy being catheterised for 6 months or so.If remission from the leukaemia is lost we hope to get it back again using a higher dose than previous of the inhibitor  Glivec/imatinib.

I wish you well and I trust that my response is of use.

John

User
Posted 16 Nov 2019 at 14:39

I had HDR at Mount Vernon 3 months ago.

On day of release, bladder capacity was only about 100ml (550ml before treatment), so peeing often (only just made it home, and had to run in the front door). Over a couple of days, capacity doubled, and has more than doubled again since, so that's not at issue anymore.

On release, I had significant urge incontinence - start peeing about 10 seconds before you expect to (e.g. on the way to the bathroom), and I couldn't feel that I was peeing. The feeling of peeing came back within 2 days IIRC, but had to use pelvic floor muscles to prevent wetting myself on the way to the bathroom. I wore incontinence pants for some weeks and pads for some weeks more afterwards. (I didn't ever let a full bladder go into the pants and pads would have done, but the security of knowing I could pee into them if necessary was well worth having.)

My flow rate halved (25ml/sec down to 11ml/sec) and has not recovered, but is still perfectly adequate. A little of this reduction was down to external beam radiotherapy immediately before the HDR, but mostly it was due to the HDR, a well known side effect.

Initially lost 10% off erection length (was warned before this is likely, and can be permanent), but in my case it has steadily recovered over the following 3 months back to original length. It's because penis bulb (including urethra through it) gets quite a bit of the radiation, and doesn't expand as much afterwards when you have an erection, pulling the penis downward, and it was actually quite painful having a urethra which was too short for your erection, and really heart if you tried angling penis back upwards. No clinicians seemed to have any advice on if I should leave it to rest to recover, or exercise it with erections, but the latter seemed to work, and it's back to original size and pain free now.

3 months on, I don't think I have any symptoms from the HDR other than slower flow.

Good luck with the recovery. I haven't heard of your treatment combination before. What was Jon's staging (TxNxMx)?

Show Most Thanked Posts
User
Posted 14 Nov 2019 at 19:36

Jane

Can't help with your questions, but just bumping you back up the posts, new posts sometimes get "lost".

Thanks Chris

User
Posted 15 Nov 2019 at 11:01

Hi Jane,

I had Brachytherapy seed implant in September 2016 at Mount Vernon and found the procedure a lot better than i was expecting and was in and out hospital in two days and walked out to my car and taken home by my daughter.

All i know about High dose Brachytherapy is that the procedure is the same as the low dose except instead of just putting the seeds in they give you short doses from radioactive probes over a couple of days but you don't have the seeds left in as i did.

I am doing well three years on with my PSA at 0.22 and yearly blood tests.If you click my Avatar it will give you an idea of my progress so far.

 

Regards John,

User
Posted 15 Nov 2019 at 11:18

David had HDR Brachytherapy. He found it a fairly easy process he had one night in hospital and come home the following day. The side effects were minimal, a bit of tiredness and discomfort, but no need for pain relief, he was in the garden pottering about the following day. The RT he found the side effects much more difficult to manage, he also had three years HT. He has been off any treatment now for 17 months and his PSA was 0.2 at his last test. 

User
Posted 15 Nov 2019 at 11:20

He was also Gleason 9 Tb3 locally advanced. Hope it goes well for you.  

User
Posted 15 Nov 2019 at 14:53

Many thanks John. I hope things are going well for you

User
Posted 15 Nov 2019 at 14:59

Thanks so much Leila. Your partner’s situation doesn’t sound unlike Jonathan’s. J has also been on a plant based diet and a whole raft of supplements including some of those you mention. 

J has had chemo in addition and is pretty wiped out by that and the hormone therapy. It’s been a year of assaults on his body one way or another but we’re hoping it will have been worth it. 

Hoping things are good for you both

User
Posted 15 Nov 2019 at 15:01

Thank you Chris

User
Posted 15 Nov 2019 at 18:55

Hi Jane,

I had so called 4D Brachytherapy on 7 November at Royal Surrey Guildford as a monotherapy and because we are early stage no other follow up or combination treatment is going to be needed.

To get to the point you ask how to cope with it I was advised the following re risks and side effects plus how to cope in the next year or so:

-the implantation of iodine 125 seeds is permanent and highly targeted;the radioactive isotope has a half life of nearly 60 days so after that it will decline in strength but we will be radioactive until 2021.It is a long process.

-one significant risk/side effect is for the next two months greater urinary symptoms of frequency and being able to urinate perhaps and also the flow may be affected but then it should get better.I was told to drink at least two litres of water a day and to avoid caffeine including decaffinated drinks and only drink redbush tea.It is an idea to measure inputs and outputs and I am doing this for a while to see that I never get dehydrated.

-potency might be reduced by up to 20% so I will be offered Cialis or Viagra on a twice weekly dose just to ensure we do not suffer in this area.

-there might be bruising and bleeding but in my case and also  friends who have had this procedure this was not an issue and no pain was experienced.

-there could be bowel changes but I was given a spacer in the form of gel between the prostate and the bowel to prevent irritation of the bowel;however irritation of the anal area from stray radiation could still be an issue so an anaesthetic cream might be useful.

-exceptionally and in about 5% of cases urinary restriction could be an issue;the prostate does not like to be poked with needles so it swells up to expand around the urethra.I have been offered Tamsulosin 400mg  for the forseeable future to shrink the prostate gland a little. In a minority of cases there is dysuria or inabilty to urinate so catheters are needed either for a period of time or those which one is trained to use oneself.

I am having physio to strengthen the pelvic area and also doing walking to raise strength and the diet is one with lots of fish and plant based foods with few meats or inflammatory foods such as processed items.

I know in your case the Gleeson and the PSA is greater than mine but in my case which is one of early detection the figures of 95% survival after 5 years hopefully will apply.

My complication is that I have been treated for 14 years for chronic myeloid leukaemia so the drug we have used could interact with the internal radiation implants to cause substantial problems for the urethra so we have come of it for a few months as we dont fancy being catheterised for 6 months or so.If remission from the leukaemia is lost we hope to get it back again using a higher dose than previous of the inhibitor  Glivec/imatinib.

I wish you well and I trust that my response is of use.

John

User
Posted 16 Nov 2019 at 13:50

Thanks so much for taking the time to respond  in such depth John. 

Jonathan’s main symptoms following the brachytherapy are tenderness from the implant device and urinary problems. Both already starting to improve.

I hope you will get the outcome you’re hoping for. We’re still not sure what to hope for. Jane

 

User
Posted 16 Nov 2019 at 14:39

I had HDR at Mount Vernon 3 months ago.

On day of release, bladder capacity was only about 100ml (550ml before treatment), so peeing often (only just made it home, and had to run in the front door). Over a couple of days, capacity doubled, and has more than doubled again since, so that's not at issue anymore.

On release, I had significant urge incontinence - start peeing about 10 seconds before you expect to (e.g. on the way to the bathroom), and I couldn't feel that I was peeing. The feeling of peeing came back within 2 days IIRC, but had to use pelvic floor muscles to prevent wetting myself on the way to the bathroom. I wore incontinence pants for some weeks and pads for some weeks more afterwards. (I didn't ever let a full bladder go into the pants and pads would have done, but the security of knowing I could pee into them if necessary was well worth having.)

My flow rate halved (25ml/sec down to 11ml/sec) and has not recovered, but is still perfectly adequate. A little of this reduction was down to external beam radiotherapy immediately before the HDR, but mostly it was due to the HDR, a well known side effect.

Initially lost 10% off erection length (was warned before this is likely, and can be permanent), but in my case it has steadily recovered over the following 3 months back to original length. It's because penis bulb (including urethra through it) gets quite a bit of the radiation, and doesn't expand as much afterwards when you have an erection, pulling the penis downward, and it was actually quite painful having a urethra which was too short for your erection, and really heart if you tried angling penis back upwards. No clinicians seemed to have any advice on if I should leave it to rest to recover, or exercise it with erections, but the latter seemed to work, and it's back to original size and pain free now.

3 months on, I don't think I have any symptoms from the HDR other than slower flow.

Good luck with the recovery. I haven't heard of your treatment combination before. What was Jon's staging (TxNxMx)?

User
Posted 16 Nov 2019 at 15:44

Thanks for replying and sharing your experience and advice Andy. It really is very useful.

Jonathan has not been able to have an mri because he has a pacemaker.

His CT and bone scans have so far been n0 m0. His oncologist is treating him as T3  based on original PSA and Gleason score.

again - big thank you. Jane

 
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