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Brachy+Ebrt+Ht - how might it change my quality of daily life?

User
Posted 30 Sep 2020 at 17:52

Hello,

I am a newbie in this forum -  67 year old man, just diagnosed. PSA 47, Gleason score 3+4=7. T3aN0.  Some PNI. Bone scan clear although awaiting PET scan to check small suspect area on pelvis picked up by MRI (which may turn up other things also, given high PSA).  Relatively fit, not overweight and take no daily meds. Treatment plan not discussed in detail yet although the Urologist and now the Oncologist are definitely guiding me down the route of  Brachy (not sure if LDR or HDR) EBRT and HT.

I've read a number of posts here which have been very helpful in giving me an understanding of the details of how this combination of treatment is applied and some of its side effects. 

The reason for my post is to help me understand how my overall quality of life might change during and after treatment. So far, advice I've had has included my Oncologist, who said that the side effects are "tolerable" (hopefully he'll expand on that at some point), to some who appear to have continued life more or less as usual, and yet others who have left me feeling that the side effects of treatment could leave me significantly incapacitated.

I'd really appreciate hearing from members of this community about your personal experiences of how the practicalities of your life have been impacted - for example were you able to keep working, continue driving, exercise your dog daily (if you have one!), go out shopping/for a coffee, look after grandchildren (Covid permitting) for the day etc.  Any and all thoughts would be gratefully received to help me decide how to deal with the next stage of this.

Many thanks in anticipation.

Mike

 

User
Posted 01 Oct 2020 at 23:32

Hi Mike, the hot sweats on HT may or may not occur, I had a few. Evening primrose oil and sage tablets are possible solutions. I used EPO a few times, but not consistently enough to prove if it worked. One of our contributors SR12 recommended both to his dad and it seems to have been successful, once you are on HT if you get sweats (mine were worse in hot weather, you may not get them in winter) try the EPO and sage, and report back to us, it's not exactly a clinical trial, but it may help others.

I have to say I never did much exercise before HT and I didn't do any more whilst on HT. I'm not saying that was a good thing, but an energetic dog may give you enough exercise if you aren't a gym bunny. 

Dave

User
Posted 30 Sep 2020 at 23:19

Hi Mike. Welcome

I'm going to take a guess it will be hdr brachy, as the three treatments would be identical to mine. I was in my early 50s so a good bit younger than you, but most 67year olds now a days are in very good health so the difference in age is probably irrelevant. 

The side effects are not too bad. The brachy will require an over night stay in hospital, and a general anaesthetic. Not very pleasant but it is only one day out of your life. Pissing a little blood afterward not a big issue. 

The ebrt was 15 fractions for me. Plenty of people carry on going to work. I chose not too but I could have. I went in and out of Manchester by motorbike. For me I can not remember any side effects apart from a pain in the arse one night. You might need toilet a bit more urgently, so buy a key for disabled toilets off line, it's about £3 and you are entitled to it. 

HT is the biggest problem. Complete loss of libido, not a dreadful problem, you don't miss the sex with no libido, it can be a problem in your relationship though. I reckon my penis has lost a few inches, because of atrophy. I'm sure ANDY62 will post soon, he is an expert on surviving HT. I didn't put on much weight, but I think I gained fat and lost muscle. I was on HT for two years and now off it for six months with hardly any return of libido.

I had no great problem with fatigue. Exercise is important whilst on HT to preserve muscle mass. Walking dog etc should be easy. Personally I've never been a gym bunny, but if you enjoy it then definitely do exercise. I really don't think you will be incapacitated by this.

I was only on HT for two years, if I were told I had to take it for the rest of my life, which happens to people with advanced cancer, I would be hesitant about trying to preserve my life over QoL, but I can handle it for two years. 

Dave

User
Posted 01 Oct 2020 at 09:37

Hi Mike,

Apart from having 4 days off work for the HDR brachy including the recovery period, I worked right through my treatment without any great issues. 

For the radiotherapy sessions, I would pop out of work (fortunately for me the hospital was close by) drive to the hospital, get the session done and then go back to work. I flew through the radiotherapy sessions without any major issues, however that is not necessarily the case for all of us.

The hormone therapy did drag down my energy levels and meant come early evening I was quite fatigued. However i never let it get in the way of daily life and pushed through periods when I felt quite tired, by getting out for a walk and some fresh air which helped.

I was glad to finally finish the hormone therapy and now 7 months on feel a lot better now that my testosterone levels are on the up. Indeed if I had a recurrence, then I would have to consider very carefully the balance between resuming on hormone therapy over quality of life.

Feel free to read my profile for further detail.

Jon

 

 

User
Posted 01 Oct 2020 at 13:05

Hi Mike, My husband David had HDR, Brachytherapy, followed by 4 weeks of RT & 3 yrs of HT, all of which he completed over 2 yrs ago. He found the RT the hardest to deal with, he had sleep problems, mood swings, and he was constantly exhausted. He also had to live away from home during the week which he hated.

The HT was difficult, but the more he exercised the easier it was to manage,we have a small holding, where we grow our own food, and he continued to play at home every day, and the occasional gig, as he’s a retired muzo.... his advice is keep going, keep moving. The lack of libido we discussed and planned how we hoped we would deal with it.... well we did, it wasn’t easy but love is powerful. He’s now 70, his PSA has fluctuated from <0.1 to 0.2 so far. His libido has returned, and he’s doing really well. His original diagnosis was Gleason 9 Tb3 NO MO. Q.O.L is good, and we have just harvested our winter spuds. Hope this helps. 

Leila 

 

User
Posted 01 Oct 2020 at 13:30

My diagnosis and treatment are pretty identical to yours, except my PSA was 58. Have a look at my profile.

I am 14 months post radical treatment now, PSA has been <0.01 since treatment. I injected my last hormone therapy on Tuesday (unless it comes back), which will take me to 22 months. Onco said I could stop anytime from 18 months given my PSA, but if it had been higher, he would have wanted 36 months. Hormone therapy hasn't hit me badly and I already had next injection in the fridge, so I made that my last one.

At my 12 month review, my comment to my consultant was that all the short term side effects had gone at about 10 months, and that I was in a much better state at this stage than I ever imagined I would be at the outset. I have one long term side effect so far, occasional painless minor rectal bleeding, which has no impact on Quality of Life. I didn't have SpaceOAR fitted - we talked about it and I could have had it on the NHS as part of a trial, but my onco said not recommended for a high risk patient, and long term serious bowel issues lower with HDR Boost than with just external beam radiotherapy.

The treatment path you refer to is call HDR Boost (there is also an LDR Boost). HDR Boost is a good combination for a high risk diagnosis (which both you and I are, due to PSA and staging), giving good outcomes with low risk of long term side effects.

The treatment hasn't inconvenienced me, beyond 23 visits for radiotherapy and 3 days in hospital for the HDR Brachytherapy (many hospitals do that faster than 3 days). Had urgency for a few weeks after the HDR brachy. Note that I regard exercise as essential while on hormone therapy - it significantly reduces a number of the side effects. I cycle a lot and continued doing so during treatment, and I also attend some online trainer led classes specifically for cancer patients, so it has exercises to counter things like calcium loss from bones.

Wishing you all the best.

User
Posted 02 Oct 2020 at 00:49
Also:-

- wearing clothes of natural fibres (wool or cotton, for example)

- ensuring bed linen is cotton or linen rather than polyester cotton

- layers of clothes that can be removed & put back on

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2020 at 09:18

HT hot flushes - these are still affecting me 5 weeks after stopping HT.

Primrose oil - didn't help me

Sage Leaf tablets - I have been on these for 4 weeks and they appear to reduce the duration of each flush and maybe the frequency at night. I still don't sleep through the night.

Exercise - this is what helped me most. I was on HT before and after RARP. Once I had my surgeon review after surgery and got the OK to get back into the gym I felt better - physically and mentally. I read here that exercise is important during HT and I found that as well. I had lost muscle on HT and whilst I am not able to lift the weights I could before HT I see gains. Another improvement is that with no libido I am not distracted by females in the gym.

HT has been the biggest SE for me but there are lots of tips on here and people much more experienced than me that can help.

User
Posted 08 Oct 2020 at 21:38
I finished RT in March 2019 and am on HT for probably another year. My hot flushes usually last about one minute so have not been a real problem. The gym closing has not helped and has lead to a weight gain mostly round the middle. My main problem that no one talks about was genital shrinkage and a loss of 50/60% of the size of my Testicles as this was far more severe than i was lead to expect. But having said that it is part of the treatment and as such I've come to except it. If you do start to notice changes to your body then my advise would be to look at them and not do as I did and avoid mirrors and touching and seeing yourself as this does absolutely nothing to help your acceptance of any changes.

I wish you every luck with your treatment.

Reg

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User
Posted 30 Sep 2020 at 23:19

Hi Mike. Welcome

I'm going to take a guess it will be hdr brachy, as the three treatments would be identical to mine. I was in my early 50s so a good bit younger than you, but most 67year olds now a days are in very good health so the difference in age is probably irrelevant. 

The side effects are not too bad. The brachy will require an over night stay in hospital, and a general anaesthetic. Not very pleasant but it is only one day out of your life. Pissing a little blood afterward not a big issue. 

The ebrt was 15 fractions for me. Plenty of people carry on going to work. I chose not too but I could have. I went in and out of Manchester by motorbike. For me I can not remember any side effects apart from a pain in the arse one night. You might need toilet a bit more urgently, so buy a key for disabled toilets off line, it's about £3 and you are entitled to it. 

HT is the biggest problem. Complete loss of libido, not a dreadful problem, you don't miss the sex with no libido, it can be a problem in your relationship though. I reckon my penis has lost a few inches, because of atrophy. I'm sure ANDY62 will post soon, he is an expert on surviving HT. I didn't put on much weight, but I think I gained fat and lost muscle. I was on HT for two years and now off it for six months with hardly any return of libido.

I had no great problem with fatigue. Exercise is important whilst on HT to preserve muscle mass. Walking dog etc should be easy. Personally I've never been a gym bunny, but if you enjoy it then definitely do exercise. I really don't think you will be incapacitated by this.

I was only on HT for two years, if I were told I had to take it for the rest of my life, which happens to people with advanced cancer, I would be hesitant about trying to preserve my life over QoL, but I can handle it for two years. 

Dave

User
Posted 01 Oct 2020 at 09:37

Hi Mike,

Apart from having 4 days off work for the HDR brachy including the recovery period, I worked right through my treatment without any great issues. 

For the radiotherapy sessions, I would pop out of work (fortunately for me the hospital was close by) drive to the hospital, get the session done and then go back to work. I flew through the radiotherapy sessions without any major issues, however that is not necessarily the case for all of us.

The hormone therapy did drag down my energy levels and meant come early evening I was quite fatigued. However i never let it get in the way of daily life and pushed through periods when I felt quite tired, by getting out for a walk and some fresh air which helped.

I was glad to finally finish the hormone therapy and now 7 months on feel a lot better now that my testosterone levels are on the up. Indeed if I had a recurrence, then I would have to consider very carefully the balance between resuming on hormone therapy over quality of life.

Feel free to read my profile for further detail.

Jon

 

 

User
Posted 01 Oct 2020 at 11:48

Hi Dave, 

Thank you for your reply and comments - all very helpful to me and It sounds like you had a reasonable ride through your treatment, which is encouraging.  That's a good tip re the disabled toilet key.

You mentioned the issues with HT and this is the area that concerns me the most. I have a friend who is 5 years into HT for terminal PC - his problem is mainly sweats which haven't improved during his time on the therapy. He also suffers from mood swings sometimes which are noticeable to me. I was originally told that I would be on HT for two years, although this may change depending on the results of my PET scan. 

Plenty to think about....

Mike

User
Posted 01 Oct 2020 at 12:06

Hi Jon,

Thank you for your reply. Sounds like the radiotherapy went really well for you - did you have a spacer fitted to help with that?

As with others, it sounds like the HT aspect is the most difficult aspect of the treatment over time - it's definitely the area I'm most apprehensive about...

Mike

User
Posted 01 Oct 2020 at 13:05

Hi Mike, My husband David had HDR, Brachytherapy, followed by 4 weeks of RT & 3 yrs of HT, all of which he completed over 2 yrs ago. He found the RT the hardest to deal with, he had sleep problems, mood swings, and he was constantly exhausted. He also had to live away from home during the week which he hated.

The HT was difficult, but the more he exercised the easier it was to manage,we have a small holding, where we grow our own food, and he continued to play at home every day, and the occasional gig, as he’s a retired muzo.... his advice is keep going, keep moving. The lack of libido we discussed and planned how we hoped we would deal with it.... well we did, it wasn’t easy but love is powerful. He’s now 70, his PSA has fluctuated from <0.1 to 0.2 so far. His libido has returned, and he’s doing really well. His original diagnosis was Gleason 9 Tb3 NO MO. Q.O.L is good, and we have just harvested our winter spuds. Hope this helps. 

Leila 

 

User
Posted 01 Oct 2020 at 13:07

P.S. He has three monthly PSA tests and six monthly phone calls from the specialist nurse. 

User
Posted 01 Oct 2020 at 13:30

My diagnosis and treatment are pretty identical to yours, except my PSA was 58. Have a look at my profile.

I am 14 months post radical treatment now, PSA has been <0.01 since treatment. I injected my last hormone therapy on Tuesday (unless it comes back), which will take me to 22 months. Onco said I could stop anytime from 18 months given my PSA, but if it had been higher, he would have wanted 36 months. Hormone therapy hasn't hit me badly and I already had next injection in the fridge, so I made that my last one.

At my 12 month review, my comment to my consultant was that all the short term side effects had gone at about 10 months, and that I was in a much better state at this stage than I ever imagined I would be at the outset. I have one long term side effect so far, occasional painless minor rectal bleeding, which has no impact on Quality of Life. I didn't have SpaceOAR fitted - we talked about it and I could have had it on the NHS as part of a trial, but my onco said not recommended for a high risk patient, and long term serious bowel issues lower with HDR Boost than with just external beam radiotherapy.

The treatment path you refer to is call HDR Boost (there is also an LDR Boost). HDR Boost is a good combination for a high risk diagnosis (which both you and I are, due to PSA and staging), giving good outcomes with low risk of long term side effects.

The treatment hasn't inconvenienced me, beyond 23 visits for radiotherapy and 3 days in hospital for the HDR Brachytherapy (many hospitals do that faster than 3 days). Had urgency for a few weeks after the HDR brachy. Note that I regard exercise as essential while on hormone therapy - it significantly reduces a number of the side effects. I cycle a lot and continued doing so during treatment, and I also attend some online trainer led classes specifically for cancer patients, so it has exercises to counter things like calcium loss from bones.

Wishing you all the best.

User
Posted 01 Oct 2020 at 14:18

Hi Mike.

No no spacer for the RT. Even if it had been available (my hospital did conduct a trial with spacers about a year after my treatment) I'm not sure whether I would have accepted.

 

User
Posted 01 Oct 2020 at 15:59

Hi Leila,

Thank you for telling me about your husband's treatment. Sounds like he has enjoyed a very good outcome from this and the message about keeping active and moving is one that keeps cropping up. We don't have a smallholding, but we do have a large, energetic dog that demands plenty of exercise, so that should help keep me moving...

Mike

User
Posted 01 Oct 2020 at 16:27

Hi Andy,

Thank you for your response and comments on this. Looks as if exercise needs to be a big priority for me to combat side effects of HT and the number of people who cycle on this forum is persuading me that I do need to dust my bike off. Also sounds like you have had a better experience with HT than many others and I'll check your profile re this aspect.

Mike

User
Posted 01 Oct 2020 at 23:32

Hi Mike, the hot sweats on HT may or may not occur, I had a few. Evening primrose oil and sage tablets are possible solutions. I used EPO a few times, but not consistently enough to prove if it worked. One of our contributors SR12 recommended both to his dad and it seems to have been successful, once you are on HT if you get sweats (mine were worse in hot weather, you may not get them in winter) try the EPO and sage, and report back to us, it's not exactly a clinical trial, but it may help others.

I have to say I never did much exercise before HT and I didn't do any more whilst on HT. I'm not saying that was a good thing, but an energetic dog may give you enough exercise if you aren't a gym bunny. 

Dave

User
Posted 02 Oct 2020 at 00:49
Also:-

- wearing clothes of natural fibres (wool or cotton, for example)

- ensuring bed linen is cotton or linen rather than polyester cotton

- layers of clothes that can be removed & put back on

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2020 at 09:18

HT hot flushes - these are still affecting me 5 weeks after stopping HT.

Primrose oil - didn't help me

Sage Leaf tablets - I have been on these for 4 weeks and they appear to reduce the duration of each flush and maybe the frequency at night. I still don't sleep through the night.

Exercise - this is what helped me most. I was on HT before and after RARP. Once I had my surgeon review after surgery and got the OK to get back into the gym I felt better - physically and mentally. I read here that exercise is important during HT and I found that as well. I had lost muscle on HT and whilst I am not able to lift the weights I could before HT I see gains. Another improvement is that with no libido I am not distracted by females in the gym.

HT has been the biggest SE for me but there are lots of tips on here and people much more experienced than me that can help.

User
Posted 02 Oct 2020 at 11:46

Hi Dave,

looks like the EPO/sage should be something for me to try - hopefully I'll be able to report positively on this.

Mike

User
Posted 02 Oct 2020 at 11:50

Thanks for this LynEyre.

I should be ok on this then as my wardrobe and bed are both polyester free zones.

User
Posted 02 Oct 2020 at 11:59

Hi wonkydonkey,

I guess I need to give the gym and weights option more consideration. My exercise is more light aerobic/stamina runs and distance walks which isn't going to help with day to day strength requirements particularly as I've already lost muscle mass through ageing process and am somewhat underweight.

Mike

User
Posted 08 Oct 2020 at 21:38
I finished RT in March 2019 and am on HT for probably another year. My hot flushes usually last about one minute so have not been a real problem. The gym closing has not helped and has lead to a weight gain mostly round the middle. My main problem that no one talks about was genital shrinkage and a loss of 50/60% of the size of my Testicles as this was far more severe than i was lead to expect. But having said that it is part of the treatment and as such I've come to except it. If you do start to notice changes to your body then my advise would be to look at them and not do as I did and avoid mirrors and touching and seeing yourself as this does absolutely nothing to help your acceptance of any changes.

I wish you every luck with your treatment.

Reg

User
Posted 08 Oct 2020 at 22:12

Reg,

Nothing you can do about shrinking testicles. They should mostly recover when you come off HT.

You can, and should be protecting yourself against shrinking penis, because long term shrinkage is not recoverable, although recent shrinkage often is. There are two things to do.

Daily 5mg low dose Tadalafil will give you continuous dosing. This might help you to get erections, but even if it doesn't, it improves blood flow in the flaccid penis, and this helps to prevent damage. A flaccid penis is normally ischemic (short of blood supply), and relies on regular erections to maintain periodic good blood flow.

You need regular erections if at all possible, for the reason above. This is more difficult on HT, but using things like vibrating cock rings, or using erotica/porn may get you enough additional arousal. Also, event dose PDE5 inhibitors can be added in to help. If you still can't get erections this way, then use a pump (Vacuum Erection Device to use the correct name). This is available on the NHS in many areas (but not everywhere).

This is called Penile Rehabilitation.

User
Posted 08 Oct 2020 at 22:16

Hi Reg,

Thank you for your comments on this. Your advice about acceptance is a good one and it is an aspect of all of this that I am struggling with a bit at the moment. You mentioned weight gain related to lack of access to the gym; did you do anything different with respect to your diet during this time?

Thanks for your good wishes.

Mike

 
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