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New to this, here for my husband

User
Posted 04 Apr 2021 at 21:17

Hi everyone, 

I have found real comfort in reading the various posts and updates in this lovely community.

I am here as we wait to see the consultant on tues for biopsy results. Hubby has psa 23, he is 59. Suffered for years with bad back and saw a GP about 4 years ago regarding weaker urine flow, particularly in the morning. Had DRE and told all ok. Carried on with life, but back ache got worse, groin pain on left side when sitting for a while. Not sure if connected or not to prostate issues. During a telephone conversation with GP in Feb about his back, he mentioned weak urine flow again. She suggested PSA test, result 23 and referred to local hospital. Saw a specialist nurse within 2 weeks, had bone scan next day and then MRi. Consultant rang with 10 days and said bone scan clear but MRI showed lesion on left hand side, PiRAd 5. Biopsy organised which he had 13 days ago. He found the biopsy horrendous, struggled to urinate afterwards which got worse, ended up in A&E 5days later, sent home but had to return 3 days later as he couldnt urinate at all and was in pain. Catheter fitted, which he had now had for 6 days, due to be removed on wed. In the meantime we had a call from hospital to see consultant on tues to discuss biopsy results. I guess we expecting the worse due to PSA, pirad, lesion and symptoms. 

My main question is that when he has a bowel movement, little blood clots appear in the catheter tubes, as though something bleeds when he pushes. Is this normal. It is worrying him a bit that he will block up again once the catheter is removed.

Like most people on here, he was fit and well before all this started. Biopsy had huge impact on him, cant do anything due to catheter. He has his own business but cant work. Just all bit of a nightmare. He is adamant that if he does need treatment, he would prefer RT and HT, does not want surgery. What is normal treatment if only 59 and PSA 23? 

We remain positive and determined to get through this. We have a son who is 13, and need to remain positive.

Thanks

Dawn

User
Posted 07 Apr 2021 at 08:35
I went down the HT/RT route and found it not too bad at all. In my case, with my relatively high PSA, there was a concern about undetectable spread outside the prostate, so RT was felt to be the safer option. Happy to answer any questions you might have about that option.

Chris

User
Posted 11 Apr 2021 at 21:44

Hi Dawn, I am afraid I only drop into this forum about once a week so have only just picked up your thread. You are going through a tough time, but most of us here have also been through different – but ultimately similar – tough times, so we hope we can provide support.

If pain continues, that is horrible. In my case the whole thing started with a UTI (though to be fair, I did have flow problems I had largely ignored earlier). After two different GP antibiotic prescriptions that gave temporary respite then a worse recurrence, I ended up with a hospital urologist who gave me something really strong which worked, plus tamsulosin for flow which worked brilliantly. It also put me on the work-up conveyor belt which eventually told me I had Gleason 7 (3+4) just like your husband.

The hospital was good at outlining options, which apparently have very similar outcomes (we are in East Yorkshire, so I guess a little bit south of you). In the end I went for surgery, my age meant the most worrying side effect of radiotherapy (increased chance of cancer 20 years down the line) was a possible issue. It sounds as if your husband is similar, there is no reason not to expect him to live into his eighties following treatment. (A third option, brachyotherapy – a different form of radiation – sounded rather good but apparently my prostate had already got too large for that). And it isn't clear that radiotherapy would resolve the poor flow issue whereas surgery would completely remove the constriction.

But surgery isn't a picnic either! Protatectomy is a major operation even if it is done through a few small incisions using a robotic probe. If that is the way your husband goes, you can expect him to be pretty washed out for a few weeks. And needing a catheter, which you already know about, doesn't help. Even after that it takes months to get back to full physical fitness. And you need to know that most patients will suffer, to some degree or another, subsequent incontinence and erectile dysfunction. I won't go into that since there are multiple threads here, but you have to anticipate effects. Incontinence in particular, if it turns out to continue beyond the initial recovery, will be made worse by physical work such as lifting which is an inevitable feature of your husband's job. (Though to be fair many patients recover OK, and for me though I leak a bit wearing one pad a day, rarely more, inside my underpants doesn't stop me enjoying life).

Good luck to both of you. Any questions just ask, there are lots of helpful folk here.

User
Posted 04 Apr 2021 at 23:42

hi Dawn,

Assuming he had a standard biopsy which pushes 12 needles through the rear into the prostate.  It is normal to bleed after the biopsy although it should be improving after 2 weeks.  It is possible that there is blood trapped between the catheter and his prostate or urethra.  Going to the toilet could be pushing it out.  That can happen after the operation.

Did they say why he couldn't urinate. It sounds like it was getting marginal before the biopsy.  Some men have an op to widen the path after it gets narrowed.  I think they call it TURPS.

The symptoms don't tell you anything about the condition. People get all sorts of blockages and problems.  The biopsy and MRI are the key.  Good news about the bone scan as that makes a big difference.  I wouldn't rule out any form of treatment but it's good to be forming thoughts.  All the best Peter

User
Posted 04 Apr 2021 at 23:48

Hi Dawn, sorry you're here. It will all be new to you and a lot to take in, but you have to plod along with this diagnosis process. The back ache is very unlikely to be related to prostate cancer, yes if it were advanced that would be a different matter, but with a clear bone scan, and a psa not in the hundreds if he has cancer it is probably local or at worst locally advanced.

I had a catheter when first diagnosed not very convenient but not totally disabling. It can take two to six weeks to recover from the biopsy it doesn't usually require a catheter but these things happen. I don't think he should worry too much about the blood clots this is still early days. If he has problems when the catheter is removed they will put another one in. I was very fortunate that the district nurse explained to me about intermittent self catheterisation. I've posted about it before and can send a link if you need information.

Normal treatment doesn't exist, we are all different, the biopsy results may rule out some options. My opinion is that surgery belongs in the dark ages and RT is the way to go, but I really must stress that is just my opinion and I have no medical training, plenty of people on here swear by surgery. 

So now it's a case of waiting for the biopsy results he may be lucky and not have PC though I would say it's 50/50.

Mcmillan has some advice on talking to teenagers about cancer. Remember this is a very treatable cancer, probably curable. I love statistics, when I was first diagnosed I looked up and found that my chances of surviving five years were 102% I thought that doesn't make sense, but what it means is that your husband is 2% more likely to die of something other than prostate cancer in the next five years. Once you know the biopsy results and have decided what treatment to have you can start thinking about 20 year survival rates. 

 

Dave

User
Posted 05 Apr 2021 at 00:35

Here is the link to a thread about catheters

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

Mine is the last post in the thread. For a sedantry job like mine a catheter was not a problem; for a builder I can see it would be very awkward, so yes if he has ongoing problems CISC will help.

I can also see that surgery will be far less appealing for someone doing a manual job, recovery can take a while. HT might be tough it saps the energy.

When you have all the test results, you can start thinking about the best treatment. You have to balance how effective the treatment is with the possible side effects. 

Dave

User
Posted 05 Apr 2021 at 06:24

hi dawn i was diagnosed in october gleeson 9 on ht over halfway through radiotherapy with few problems so far 37 fractions in total feeling ok and posotive hope this helps

User
Posted 05 Apr 2021 at 09:39
mine was 24.9
User
Posted 05 Apr 2021 at 12:19

Dawn, I was diagnosed in May 2018 at the age of 56 with a PSA of 31. Almost three years on and it's (touch wood) all sorted. It may seem hard to believe at the moment, but cancer does become a normal part of life. Everybody comes to terms with it, because you've really got to.

Happier days are ahead - seriously. I can honestly say that I've never been happier than I am now, because a cancer diagnosis really puts things into perspective. All the stuff I used to get stressed about doesn’t bother me at all now!

Best wishes,

Chris

Edited by member 05 Apr 2021 at 18:11  | Reason: Spelling.

User
Posted 05 Apr 2021 at 19:48

In my husband’s case the spot was suspected from the mri but confirmed with a SpectCT scan. The biopsy will determine the cancer grade and will tell you how many ‘cores’ it is in. Ie how much of the prostate is effected. 

It’s a horrible time waiting to find out but as many have said on this forum, from diagnosis you gradually learn to get used to a new normal. 

User
Posted 07 Apr 2021 at 01:25

Hi Dawn,

Stage 2 is not too bad. HIFU is suitable for a small number of people and brachytherapy is suitable for quite a lot of people. Have either of these been offered? It may be worth mentioning these when you next speak to the medics just to see if they are definitely ruled out or if it is just a funding thing which could be overcome.

I think your husband is almost certainly curable, but I think the side effects could reduce his work ability, being a builder. Has he got critical illness insurance, can he consider early retirement? We have plenty on this site who ask will I be able to cycle after treatment? Will I be able to play golf? But it's rather more serious when the question is will I be able to earn a living?

I think if you go for surgery you have to think how long before he can lift heavy weights. You will find a few threads on here where people have regretted over exercising post surgery. 

If he has HT he will have to fight with loss of strength and energy, some say exercise can help preserve strength, but it is an uphill struggle.

I don't think the RT would have too dramatic an effect on his ability to work, but 24 months of HT probably would, maybe reduce the HT to 12 months with a slight increase in the risk of recurrence?

I'm glad his cancer is almost certainly curable, just sorry the treatment is going to disrupt your lives. 

Dave

User
Posted 07 Apr 2021 at 08:18

Hi dawn glad the wait us over your husband is certainly curable on number 25 off 37 r/t Today on decapeptyl every 3 months and no problems up to yet spoke to a gentleman yesterday who had  gleeson 9 and psa off 50 who has had all clear doing r/t h/t the choice us personal and both have simlar outcomes good luck to you both i am sure he will be fine 

User
Posted 07 Apr 2021 at 17:05
Has he been prescribed Tamsulosin, Dawn? That worked wonders for me in the "flow" department!

Cheers,

Chris

User
Posted 07 Apr 2021 at 18:02

Hi Dawn, 

Sorry to see you and your husband have got to go through the journey of prostate cancer, I was diagnosed in 2017 low risk Gleason 6, grade 1 T2a confined.

I went on active surveillance for 3years no treatment, apart from 3 biopsies, 3 mri, 1 bone scan, I was fine with 2 of the biopsies, but the last one I had an infection in hospital overnight then it cleared up.

The decision which treatment to have RT or Surgery is something I I though about and researched for 3 years.

I decided to go for surgery, albeit RT gives the same success rate you need to read all the information for both which is available from the site, they will post all the information out to you.

Given your husband is a builder self employed? you may think surgery would take longer to deal with, this is not necessarily correct, before RT you have hormone therapy and this goes on after for a further 3 months, and RT you attend the hospital 5 days a week for 4 weeks this is the minimum time some are longer.

Surgery in one day out the next, yes a catheter for 7to 10days, no drugs apart from paracetamol for a few days.

I had surgery the 25th November 2020 everything went fine took it easy for a month, plenty of walking, in the new year started light exercise weights, by end of February fully up to speed and riding my bike again and lifting weights prior to op, I am 68years old fit retired but I can now do everything before I had surgery gardening digging no problem.

We are all different I have had a great recovery I was fit before that helps of course, good luck to both of you which ever you choose, if you go for RT surgery is not really possible if required in the future, but RT can be a salvage treatment if ever required after surgery, take care.

Daily

User
Posted 07 Apr 2021 at 18:45

Hi dawn a good set off people on here all going or have gone through the same thing  treatment has improved so much so hopefully we will all come through this whichever option we choose all the best gaz

User
Posted 07 Apr 2021 at 22:51

Originally Posted by: Online Community Member

Hi Chris, yes he has been on that for about week, his flow is definitely better.  do you have to take it permanently or is a short term thing.  We have a 28 day supply but not sure if he will need more.  Will check with hospital, compiling a list of questions!

dawn

I'm taking it permanently in a small dose (one tablet every other day), because the radiation made my prostate swell up a bit. It isn't essential for me - I can manage without it - but it definitely makes things easier! It's the only permanent "side-effect" of my treatment, two years after finishing RT. Everything else has long since sorted itself out.

Best wishes,

Chris

 

Edited by member 07 Apr 2021 at 22:54  | Reason: Not specified

User
Posted 08 Apr 2021 at 23:33
RP will certainly solve any issues with his prostate and retention - he will no longer have one to retain anything!

Hard graft and leakage associated with lifting may be a problem initially if he has an RP.

Any catheter issues after RP are usually short lived but none of the radical treatment s are risk free in the catheter dept.

Rather than doing something because you know someone who did X or Y you need to pick the best treatment for his stage, that offers the most tolerable side effect profile for your personal circumstances.

User
Posted 09 Apr 2021 at 08:01

Dawn,

Hope things start to improve.

In the end I chose the RP route and so far I feel its been the right decision for me. Click on my profile if yoy would like to know more

Best of luck

User
Posted 10 Apr 2021 at 14:15

Hi Dawn,

Sorry to hear your husband suffered a infection, I did after my 3rd biopsy not nice, it helped me make my mind up about having treatment, the type of treatment you choose is your husband's call, they do say there is no right or wrong choice it's what works for you.

I have no regrets I went with surgery which removes a lot of prostate problems that can be ongoing with other treatments.

I hope you get there soon, but once again I can do everything physically I could before my surgery in November 2020, but we are all different, I would advise whatever your choice try to get as fit as possible before this helps with recovery.

Kind Regards 

Daily 

User
Posted 14 Apr 2021 at 23:12

Originally Posted by: Online Community Member

Hi Dawn, I am afraid I only drop into this forum about once a week so have only just picked up your thread. You are going through a tough time, but most of us here have also been through different – but ultimately similar – tough times, so we hope we can provide support.

If pain continues, that is horrible. In my case the whole thing started with a UTI (though to be fair, I did have flow problems I had largely ignored earlier). After two different GP antibiotic prescriptions that gave temporary respite then a worse recurrence, I ended up with a hospital urologist who gave me something really strong which worked, plus tamsulosin for flow which worked brilliantly. It also put me on the work-up conveyor belt which eventually told me I had Gleason 7 (3+4) just like your husband.

The hospital was good at outlining options, which apparently have very similar outcomes (we are in East Yorkshire, so I guess a little bit south of you). In the end I went for surgery, my age meant the most worrying side effect of radiotherapy (increased chance of cancer 20 years down the line) was a possible issue. It sounds as if your husband is similar, there is no reason not to expect him to live into his eighties following treatment. (A third option, brachyotherapy – a different form of radiation – sounded rather good but apparently my prostate had already got too large for that). And it isn't clear that radiotherapy would resolve the poor flow issue whereas surgery would completely remove the constriction.

But surgery isn't a picnic either! Protatectomy is a major operation even if it is done through a few small incisions using a robotic probe. If that is the way your husband goes, you can expect him to be pretty washed out for a few weeks. And needing a catheter, which you already know about, doesn't help. Even after that it takes months to get back to full physical fitness. And you need to know that most patients will suffer, to some degree or another, subsequent incontinence and erectile dysfunction. I won't go into that since there are multiple threads here, but you have to anticipate effects. Incontinence in particular, if it turns out to continue beyond the initial recovery, will be made worse by physical work such as lifting which is an inevitable feature of your husband's job. (Though to be fair many patients recover OK, and for me though I leak a bit wearing one pad a day, rarely more, inside my underpants doesn't stop me enjoying life).

Good luck to both of you. Any questions just ask, there are lots of helpful folk here.

Thank you, really helpful. It has been a tough few weeks, two different bacterial infections, probably from the catheter ( side effect of the template biopsy). He is on a combination of 2 different antibiotics, still feels like he is sitting on a golf ball!! But definitely feeling much better. He has literally be floored with this since the biopsy on the 22nd March. Feel he has turned a corner now after the biopsy and infections but still unable to work or do much. We are meeting with the oncologist next Fri to discuss HT/RT. I spoke with one of the specialist nurses yesterday and she thinkS he would probably need a T.U.R.P procedure if he chooses HT/RT. This appears quite invasive and would require a GA and hospital stay. He could be prone to infections in the future and given everything, surgery to remove the prostate is going to be the best option. I think he will probably have to give up work, he has his own business and we will probably have to put it into liquidation as either way, he just cant work n we cant keep it ticking over. 

Tha is again for the information, really appreciated and helpful

Dawn

User
Posted 15 Apr 2021 at 08:49

Dawn,

Good luck with whatever treatment plan you both decide. Its a stressful time but I think gets easier once you make a decision. I was diagnosed in 2017 and didn't make a decision until 2020!!

I went the RP route and really glad I did and that I didn't delay further. Surgery for me was March 23rd 2020. Apart from the inevitable dry orgasms and a scar (I Had open surgery) things are more or less back to where things were pre-op...but without the stress of treatment looming.

Best wishes

Show Most Thanked Posts
User
Posted 04 Apr 2021 at 23:42

hi Dawn,

Assuming he had a standard biopsy which pushes 12 needles through the rear into the prostate.  It is normal to bleed after the biopsy although it should be improving after 2 weeks.  It is possible that there is blood trapped between the catheter and his prostate or urethra.  Going to the toilet could be pushing it out.  That can happen after the operation.

Did they say why he couldn't urinate. It sounds like it was getting marginal before the biopsy.  Some men have an op to widen the path after it gets narrowed.  I think they call it TURPS.

The symptoms don't tell you anything about the condition. People get all sorts of blockages and problems.  The biopsy and MRI are the key.  Good news about the bone scan as that makes a big difference.  I wouldn't rule out any form of treatment but it's good to be forming thoughts.  All the best Peter

User
Posted 04 Apr 2021 at 23:48

Hi Dawn, sorry you're here. It will all be new to you and a lot to take in, but you have to plod along with this diagnosis process. The back ache is very unlikely to be related to prostate cancer, yes if it were advanced that would be a different matter, but with a clear bone scan, and a psa not in the hundreds if he has cancer it is probably local or at worst locally advanced.

I had a catheter when first diagnosed not very convenient but not totally disabling. It can take two to six weeks to recover from the biopsy it doesn't usually require a catheter but these things happen. I don't think he should worry too much about the blood clots this is still early days. If he has problems when the catheter is removed they will put another one in. I was very fortunate that the district nurse explained to me about intermittent self catheterisation. I've posted about it before and can send a link if you need information.

Normal treatment doesn't exist, we are all different, the biopsy results may rule out some options. My opinion is that surgery belongs in the dark ages and RT is the way to go, but I really must stress that is just my opinion and I have no medical training, plenty of people on here swear by surgery. 

So now it's a case of waiting for the biopsy results he may be lucky and not have PC though I would say it's 50/50.

Mcmillan has some advice on talking to teenagers about cancer. Remember this is a very treatable cancer, probably curable. I love statistics, when I was first diagnosed I looked up and found that my chances of surviving five years were 102% I thought that doesn't make sense, but what it means is that your husband is 2% more likely to die of something other than prostate cancer in the next five years. Once you know the biopsy results and have decided what treatment to have you can start thinking about 20 year survival rates. 

 

Dave

User
Posted 05 Apr 2021 at 00:05

Thanks for the reply Peter, his prostate was very swollen and one of the A&E doctors thought it might be blood clots from the biopsy causing the urethra to block. The urology consultant has since prescribed Tamsulosin to help reduce swollen prostate. It's all such a minefield. He is a very positive and upbeat person but the catheter is frustrating him. He is a builder and literally cant do anything at the moment. 

Dawn

User
Posted 05 Apr 2021 at 00:12

Thanks Dave

Appreciate help.and advice from both you and Peter.

Reassuring re catheter, it is early days and he found the whole biopsy experience traumatic and painful. He said there was a lot of blood and felt everything. I think they took 25 samples. 

Good idea re Macmillan and how to speak to teenagers, I hadn't thought of that. He is a sensitive kid and 14 soon so we are in 2 minds whether to tell him or not. He just thinks his Dad has an urine infection atm

 

Will update after tues once we have all results

Thanks again

Dawn

User
Posted 05 Apr 2021 at 00:35

Here is the link to a thread about catheters

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

Mine is the last post in the thread. For a sedantry job like mine a catheter was not a problem; for a builder I can see it would be very awkward, so yes if he has ongoing problems CISC will help.

I can also see that surgery will be far less appealing for someone doing a manual job, recovery can take a while. HT might be tough it saps the energy.

When you have all the test results, you can start thinking about the best treatment. You have to balance how effective the treatment is with the possible side effects. 

Dave

User
Posted 05 Apr 2021 at 06:24

hi dawn i was diagnosed in october gleeson 9 on ht over halfway through radiotherapy with few problems so far 37 fractions in total feeling ok and posotive hope this helps

User
Posted 05 Apr 2021 at 09:34

Thanks Gaz61, hope all  continues to go well with treatment. Would u mind sharing what your PSA was, I am concerned about John's being 23 and wondering if this impacts on potential treatment options and Gleeson 

Thanks 

Dawn

User
Posted 05 Apr 2021 at 09:39
mine was 24.9
User
Posted 05 Apr 2021 at 10:29
Hi Dawn my husband had a similar psa to yours and is of a similar age. He had low urine flow and went to the GP who did a DRE and said all seems fine. Completely different to the urologist who did the DRE a couple of weeks later and said it was definitely abnormal.

Husband has a spot on his sternum and also in lymph nodes so this may be a different treatment path. He had 6 rounds of chemotherapy and then 6 rounds of radiotherapy. He’s tolerated it all very well bar a few days when he was exhausted. He’s worked throughout - not a manual job though - and is ok now although does get stiff sore legs which is more likely to be down to the HT.

Best of luck for the upcoming results.

User
Posted 05 Apr 2021 at 11:41

Thank you, that is really helpful.

How was the lymph and spot picked up? Was this on the MRI or from the biopsy. I am wondering how they determine spread to lymph, ie) is this a different scan such as CT or is it determined by MRI and biopsy. 

Hope all continues to go well with your husbands treatment. We trying to be positive but as the appointment grows closer 2mrw, I am getting more nervous for him. 

Dawn

User
Posted 05 Apr 2021 at 12:19

Dawn, I was diagnosed in May 2018 at the age of 56 with a PSA of 31. Almost three years on and it's (touch wood) all sorted. It may seem hard to believe at the moment, but cancer does become a normal part of life. Everybody comes to terms with it, because you've really got to.

Happier days are ahead - seriously. I can honestly say that I've never been happier than I am now, because a cancer diagnosis really puts things into perspective. All the stuff I used to get stressed about doesn’t bother me at all now!

Best wishes,

Chris

Edited by member 05 Apr 2021 at 18:11  | Reason: Spelling.

User
Posted 05 Apr 2021 at 18:55

Good to hear chris a tonic for us all  hopefully we will all conquer this horrible desease 

User
Posted 05 Apr 2021 at 19:48

In my husband’s case the spot was suspected from the mri but confirmed with a SpectCT scan. The biopsy will determine the cancer grade and will tell you how many ‘cores’ it is in. Ie how much of the prostate is effected. 

It’s a horrible time waiting to find out but as many have said on this forum, from diagnosis you gradually learn to get used to a new normal. 

User
Posted 06 Apr 2021 at 21:44

Quick update. My lovely husband diagnosed with stage 2 localised PC, Gleason 7 (3+4). Been offered either surgery or HT&RT.  Just need to decide which one would be best. Given his urinary problems from biopsy, leaning more towards surgery. The RT at our hospital is IMRT. 

Any advice / suggestions

Thanks

Dawn

User
Posted 07 Apr 2021 at 01:25

Hi Dawn,

Stage 2 is not too bad. HIFU is suitable for a small number of people and brachytherapy is suitable for quite a lot of people. Have either of these been offered? It may be worth mentioning these when you next speak to the medics just to see if they are definitely ruled out or if it is just a funding thing which could be overcome.

I think your husband is almost certainly curable, but I think the side effects could reduce his work ability, being a builder. Has he got critical illness insurance, can he consider early retirement? We have plenty on this site who ask will I be able to cycle after treatment? Will I be able to play golf? But it's rather more serious when the question is will I be able to earn a living?

I think if you go for surgery you have to think how long before he can lift heavy weights. You will find a few threads on here where people have regretted over exercising post surgery. 

If he has HT he will have to fight with loss of strength and energy, some say exercise can help preserve strength, but it is an uphill struggle.

I don't think the RT would have too dramatic an effect on his ability to work, but 24 months of HT probably would, maybe reduce the HT to 12 months with a slight increase in the risk of recurrence?

I'm glad his cancer is almost certainly curable, just sorry the treatment is going to disrupt your lives. 

Dave

User
Posted 07 Apr 2021 at 08:18

Hi dawn glad the wait us over your husband is certainly curable on number 25 off 37 r/t Today on decapeptyl every 3 months and no problems up to yet spoke to a gentleman yesterday who had  gleeson 9 and psa off 50 who has had all clear doing r/t h/t the choice us personal and both have simlar outcomes good luck to you both i am sure he will be fine 

User
Posted 07 Apr 2021 at 08:35
I went down the HT/RT route and found it not too bad at all. In my case, with my relatively high PSA, there was a concern about undetectable spread outside the prostate, so RT was felt to be the safer option. Happy to answer any questions you might have about that option.

Chris

User
Posted 07 Apr 2021 at 16:06

Thanks Dave

No we were not offered the other options.  We live in the north east of England and these seemed to be the only two options.  I am concerned about RT/HT route due to problems he has had with urine retention following the biopsy.  He would probably need a procedure before going down that route to widen his plumbing pipe!

Agree re RP aswell.  I think his building days will be over, regardless of either route.  I am however, going to enquire about the other two options.

Catheter removed today after 9 days.  All seems okay so far but he has to rest up and take things easy.  He will not be at work anytime soon.  

Dawn

 

User
Posted 07 Apr 2021 at 16:07

Thanks Daz and Cheshire Chris, we are really torn between the two.  I think we are both a bit concerned about the longer term impact of HT and if the RT could cause more urinary problems.  So difficult to know which way to go. 

Dawn

User
Posted 07 Apr 2021 at 17:05
Has he been prescribed Tamsulosin, Dawn? That worked wonders for me in the "flow" department!

Cheers,

Chris

User
Posted 07 Apr 2021 at 18:02

Hi Dawn, 

Sorry to see you and your husband have got to go through the journey of prostate cancer, I was diagnosed in 2017 low risk Gleason 6, grade 1 T2a confined.

I went on active surveillance for 3years no treatment, apart from 3 biopsies, 3 mri, 1 bone scan, I was fine with 2 of the biopsies, but the last one I had an infection in hospital overnight then it cleared up.

The decision which treatment to have RT or Surgery is something I I though about and researched for 3 years.

I decided to go for surgery, albeit RT gives the same success rate you need to read all the information for both which is available from the site, they will post all the information out to you.

Given your husband is a builder self employed? you may think surgery would take longer to deal with, this is not necessarily correct, before RT you have hormone therapy and this goes on after for a further 3 months, and RT you attend the hospital 5 days a week for 4 weeks this is the minimum time some are longer.

Surgery in one day out the next, yes a catheter for 7to 10days, no drugs apart from paracetamol for a few days.

I had surgery the 25th November 2020 everything went fine took it easy for a month, plenty of walking, in the new year started light exercise weights, by end of February fully up to speed and riding my bike again and lifting weights prior to op, I am 68years old fit retired but I can now do everything before I had surgery gardening digging no problem.

We are all different I have had a great recovery I was fit before that helps of course, good luck to both of you which ever you choose, if you go for RT surgery is not really possible if required in the future, but RT can be a salvage treatment if ever required after surgery, take care.

Daily

User
Posted 07 Apr 2021 at 18:11

Hi Chris, yes he has been on that for about week, his flow is definitely better.  do you have to take it permanently or is a short term thing.  We have a 28 day supply but not sure if he will need more.  Will check with hospital, compiling a list of questions!

dawn

User
Posted 07 Apr 2021 at 18:22

Thanks Daily, really good to hear and I am glad you are doing well. 

I asked the consultant yesterday how long he would have had this and he said years, thankfully caught it now before it progresses further.  He had symptoms about 3 years ago, makes me wonder why they didnt  PSA sooner, guess the outcome and treatment options would be the same though.  Cant look back though and just have to start looking forward and what might work best.  I can advantages and disadvantages for both. I had started to quite a bit of research before chatting with the consultant, I was leaning more towards RP and John towards HT/RT.  I know someone who had the former and he knows someone who had the latter.  John is self-employed and to be honest, I think given the pandemic and a back problem from years of wear and tear, I think he knows his building days of heavy lifting are over.  He hasnt got much of a pension and we dont have critical illness but I work full-time and I am sure we will be able to manage.  Main thing is to get him fit and well.  This community is so helpful, and good to hear the different experiences. 

Dawn

User
Posted 07 Apr 2021 at 18:45

Hi dawn a good set off people on here all going or have gone through the same thing  treatment has improved so much so hopefully we will all come through this whichever option we choose all the best gaz

User
Posted 07 Apr 2021 at 22:51

Originally Posted by: Online Community Member

Hi Chris, yes he has been on that for about week, his flow is definitely better.  do you have to take it permanently or is a short term thing.  We have a 28 day supply but not sure if he will need more.  Will check with hospital, compiling a list of questions!

dawn

I'm taking it permanently in a small dose (one tablet every other day), because the radiation made my prostate swell up a bit. It isn't essential for me - I can manage without it - but it definitely makes things easier! It's the only permanent "side-effect" of my treatment, two years after finishing RT. Everything else has long since sorted itself out.

Best wishes,

Chris

 

Edited by member 07 Apr 2021 at 22:54  | Reason: Not specified

User
Posted 08 Apr 2021 at 21:27

Well the saga continues, we had the diagnosis on Tuesday, catheter removed yesterday and struggling to pee following biopsy, all fine and urinating fine until we went to bed. Pain, temp, uncontrollable shaking and difficulty urinating again. Back to hospital this morning, diagnosed with UTI. Now on antibiotics as well as the prostate med. Poor guy, just helpless. Having more doubts about HT/RT given the urinary issues and how RT could make this worse. However if he goes down RP route, he will need another catheter. Anyone else had ongoing issues with UTI following catheters. 

Thanks

Dawn

User
Posted 08 Apr 2021 at 23:33
RP will certainly solve any issues with his prostate and retention - he will no longer have one to retain anything!

Hard graft and leakage associated with lifting may be a problem initially if he has an RP.

Any catheter issues after RP are usually short lived but none of the radical treatment s are risk free in the catheter dept.

Rather than doing something because you know someone who did X or Y you need to pick the best treatment for his stage, that offers the most tolerable side effect profile for your personal circumstances.

User
Posted 09 Apr 2021 at 00:28

Originally Posted by: Online Community Member
RP will certainly solve any issues with his prostate and retention - he will no longer have one to retain anything!

Hard graft and leakage associated with lifting may be a problem initially if he has an RP.

Any catheter issues after RP are usually short lived but none of the radical treatment s are risk free in the catheter dept.

Rather than doing something because you know someone who did X or Y you need to pick the best treatment for his stage, that offers the most tolerable side effect profile for your personal circumstances.

Thanks, yes the nurse said it will kill 2 birds with one stone if he has RP, removes the tumour and will resolves urinary issues longer term. If he goes down RT route, he will need investigations and probably a procedure to core out urethra first. 

 

Edited by member 09 Apr 2021 at 00:28  | Reason: Typo

User
Posted 09 Apr 2021 at 08:01

Dawn,

Hope things start to improve.

In the end I chose the RP route and so far I feel its been the right decision for me. Click on my profile if yoy would like to know more

Best of luck

User
Posted 10 Apr 2021 at 14:15

Hi Dawn,

Sorry to hear your husband suffered a infection, I did after my 3rd biopsy not nice, it helped me make my mind up about having treatment, the type of treatment you choose is your husband's call, they do say there is no right or wrong choice it's what works for you.

I have no regrets I went with surgery which removes a lot of prostate problems that can be ongoing with other treatments.

I hope you get there soon, but once again I can do everything physically I could before my surgery in November 2020, but we are all different, I would advise whatever your choice try to get as fit as possible before this helps with recovery.

Kind Regards 

Daily 

User
Posted 11 Apr 2021 at 21:44

Hi Dawn, I am afraid I only drop into this forum about once a week so have only just picked up your thread. You are going through a tough time, but most of us here have also been through different – but ultimately similar – tough times, so we hope we can provide support.

If pain continues, that is horrible. In my case the whole thing started with a UTI (though to be fair, I did have flow problems I had largely ignored earlier). After two different GP antibiotic prescriptions that gave temporary respite then a worse recurrence, I ended up with a hospital urologist who gave me something really strong which worked, plus tamsulosin for flow which worked brilliantly. It also put me on the work-up conveyor belt which eventually told me I had Gleason 7 (3+4) just like your husband.

The hospital was good at outlining options, which apparently have very similar outcomes (we are in East Yorkshire, so I guess a little bit south of you). In the end I went for surgery, my age meant the most worrying side effect of radiotherapy (increased chance of cancer 20 years down the line) was a possible issue. It sounds as if your husband is similar, there is no reason not to expect him to live into his eighties following treatment. (A third option, brachyotherapy – a different form of radiation – sounded rather good but apparently my prostate had already got too large for that). And it isn't clear that radiotherapy would resolve the poor flow issue whereas surgery would completely remove the constriction.

But surgery isn't a picnic either! Protatectomy is a major operation even if it is done through a few small incisions using a robotic probe. If that is the way your husband goes, you can expect him to be pretty washed out for a few weeks. And needing a catheter, which you already know about, doesn't help. Even after that it takes months to get back to full physical fitness. And you need to know that most patients will suffer, to some degree or another, subsequent incontinence and erectile dysfunction. I won't go into that since there are multiple threads here, but you have to anticipate effects. Incontinence in particular, if it turns out to continue beyond the initial recovery, will be made worse by physical work such as lifting which is an inevitable feature of your husband's job. (Though to be fair many patients recover OK, and for me though I leak a bit wearing one pad a day, rarely more, inside my underpants doesn't stop me enjoying life).

Good luck to both of you. Any questions just ask, there are lots of helpful folk here.

User
Posted 14 Apr 2021 at 23:12

Originally Posted by: Online Community Member

Hi Dawn, I am afraid I only drop into this forum about once a week so have only just picked up your thread. You are going through a tough time, but most of us here have also been through different – but ultimately similar – tough times, so we hope we can provide support.

If pain continues, that is horrible. In my case the whole thing started with a UTI (though to be fair, I did have flow problems I had largely ignored earlier). After two different GP antibiotic prescriptions that gave temporary respite then a worse recurrence, I ended up with a hospital urologist who gave me something really strong which worked, plus tamsulosin for flow which worked brilliantly. It also put me on the work-up conveyor belt which eventually told me I had Gleason 7 (3+4) just like your husband.

The hospital was good at outlining options, which apparently have very similar outcomes (we are in East Yorkshire, so I guess a little bit south of you). In the end I went for surgery, my age meant the most worrying side effect of radiotherapy (increased chance of cancer 20 years down the line) was a possible issue. It sounds as if your husband is similar, there is no reason not to expect him to live into his eighties following treatment. (A third option, brachyotherapy – a different form of radiation – sounded rather good but apparently my prostate had already got too large for that). And it isn't clear that radiotherapy would resolve the poor flow issue whereas surgery would completely remove the constriction.

But surgery isn't a picnic either! Protatectomy is a major operation even if it is done through a few small incisions using a robotic probe. If that is the way your husband goes, you can expect him to be pretty washed out for a few weeks. And needing a catheter, which you already know about, doesn't help. Even after that it takes months to get back to full physical fitness. And you need to know that most patients will suffer, to some degree or another, subsequent incontinence and erectile dysfunction. I won't go into that since there are multiple threads here, but you have to anticipate effects. Incontinence in particular, if it turns out to continue beyond the initial recovery, will be made worse by physical work such as lifting which is an inevitable feature of your husband's job. (Though to be fair many patients recover OK, and for me though I leak a bit wearing one pad a day, rarely more, inside my underpants doesn't stop me enjoying life).

Good luck to both of you. Any questions just ask, there are lots of helpful folk here.

Thank you, really helpful. It has been a tough few weeks, two different bacterial infections, probably from the catheter ( side effect of the template biopsy). He is on a combination of 2 different antibiotics, still feels like he is sitting on a golf ball!! But definitely feeling much better. He has literally be floored with this since the biopsy on the 22nd March. Feel he has turned a corner now after the biopsy and infections but still unable to work or do much. We are meeting with the oncologist next Fri to discuss HT/RT. I spoke with one of the specialist nurses yesterday and she thinkS he would probably need a T.U.R.P procedure if he chooses HT/RT. This appears quite invasive and would require a GA and hospital stay. He could be prone to infections in the future and given everything, surgery to remove the prostate is going to be the best option. I think he will probably have to give up work, he has his own business and we will probably have to put it into liquidation as either way, he just cant work n we cant keep it ticking over. 

Tha is again for the information, really appreciated and helpful

Dawn

User
Posted 15 Apr 2021 at 08:49

Dawn,

Good luck with whatever treatment plan you both decide. Its a stressful time but I think gets easier once you make a decision. I was diagnosed in 2017 and didn't make a decision until 2020!!

I went the RP route and really glad I did and that I didn't delay further. Surgery for me was March 23rd 2020. Apart from the inevitable dry orgasms and a scar (I Had open surgery) things are more or less back to where things were pre-op...but without the stress of treatment looming.

Best wishes

User
Posted 18 Jul 2021 at 20:07

Hu Dawn, 

I am so sorry that you and your husband are dealing with this. I was wondering if I could ask you some question about your husband, Pre Diagnosis..

 

Billie-

 

User
Posted 24 Jul 2021 at 00:50

Hi Billi

Yes of course, how can I help?

Dawn 

 

 
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