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After brachytherapy.

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User
Posted 31 Jan 2017 at 18:19

Hi everyone!

My husband (60 yo) had a brachytherapy on Dec.27 2016. It was done by highly respected and experienced doctor in NY.

Today is exactly 6 weeks since the procedure was done and he still has a catheter. He was able to pee right after the procedure after nurse gave him a lot of liquid and catheter was removed. But then the next day his output was not enough and we ended up in emergency room.

Since then he had 3 more attempts to get off the catheter and they all failed. The next one is scheduled for Feb.16. He feels OK, no other problems. He had an ultrasound, a ct scan, urodynamic (urine flow) tests. All are fine except of course of urine flow. He takes flomax (tamsulosin) twice a day. 

Any advice, any info, any ideas what could go wrong?? He is very depressed. He says: I was normal, now I am an invalid. He was diagnosed with PC a year ago with PSA 5.5 and Gleason (3+3). We took a year to decide what to do, but when his PSA went up to 6.0 we decided on brachytherapy. And now we have this :((((

Thank you very much for any advice and info.

 

 

Edited by member 31 Jan 2017 at 20:15  | Reason: Not specified

User
Posted 06 Feb 2017 at 18:40

"Quote" I am still taking one Tamsulosin a day, though my urologist wants me to try without, but its a confidence thing with me.


Alan, when John first stopped taking Tamsulosin he hedged his bets by carrying a couple around in his wallet.

He's never had to use them but they are there, especially if we are out and about

We can't control the winds - but we can adjust our sails
User
Posted 11 Feb 2017 at 14:15

You are spot on sjtb, the published criteria for brachy are:
- PSA less than 10
- Gleason 7 or less
- prostate not enlarged
- no pre-existing hesitancy / flow problems

In hindsight, I wonder if your OH was just come upon by someone who was a real brachy evangelist, more interested in getting numbers under his belt than in considering each man's best interests. You may remember that I was deeply concerned for you right at the start that your OH did not see a urological surgeon before making his decision. I might be being unfair to the specialist - perhaps he was particularly taken with your husband's responsibilities as a farmer / livestock keeper and truly believed it was the best option but you have to wonder if the motivation was his own interests rather than his patient's.

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

User
Posted 11 Feb 2017 at 20:50
No I can't remember either now. When we first went, the urologist said if it was him then he would go on active surveillance. He also said due to bowel broblems brachy would be the mildest on his bowels. He then passed us on to a Macmillan nurse who did go through and explain each treatment with us. Gave us all the info and sent us away. Next appointment was with a lady in oncology. She asked if we'd discussed treatments and OH said he preferred the sound of brachy or EBRT. She just said other options were surveillance or prostate removal, her next words were something like "if you choose that you'll be impotent" so it was never mentioned again. She then asked if we wanted referring to someone that performs brachytherapy and it went from there. I think if we'd asked about surgery then we would have seen someone. In hindsight I wish he'd stayed on surveillance. He would have needed treatment eventually, maybe the same path would have been taken in a few years. But he retiring from farming this year so he may have taken a different path rather than the one that took the least time out of his work.

Let's hope the new tablets are better and they work for a long time. Just got the next psa test to get through and yearly check up with the brachy consultant. (April) I know a few others that have had brachy and their psa is at 0.1 whereas OH is at 0.7 so hopefully that isn't a problem. Possibly just the fact it's been inflamed and unsettled keeping it up a bit.

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User
Posted 31 Jan 2017 at 20:56

Hi

Sorry to hear it's not going as well as you had hoped. I don't have any experience with brachytherapy but there are members with direct experience  who I'm sure will provide good feedback and advice.

Chris

User
Posted 31 Jan 2017 at 21:20

Hi,

If you say whether it was high dose Brachtherapy or low dose seeds it may help a member reply more meaningfully.

Unfortunately, whatever treatment a man has there is a risk of complications or just slow progress. How does consultant see it?

Barry
User
Posted 31 Jan 2017 at 21:28

It was a low dose therapy. the total number of seeds implanted was 92. the prostate volume was determined to be 67 cc. iodine-125 was used in an average activity per seed 0.666u. 

User
Posted 01 Feb 2017 at 09:52

Hello ZZ1 and welcome to the site.

92 seeds are many more than my husband had which was, I believe, 58.

Please reassure your husband that it is very early days for him. Some men can manage straight away (mine was fortunate in that he didn't need a catheter but he did suffer urgency issues) but some do have to wait for things to calm down a bit.

It's true that the Brachytherapy procedure is not as drastic as having had the full removal but his body has still undergone massive trauma. He only needs to look at the bruising around that area to see that.

If you look at my profile you will see I have kept a log of my husband's journey.

You obviously didn't rush into treatment and like my other half took time to decide what was best for you both. There are likely to be other issues further down the line but they can be overcome with patience which is really what he needs now.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Feb 2017 at 12:11

Hi 

I had my Brachytherapy in September 2016 and did not have a catheter at the time but did have a lot of urgency and low flow and i am also on Tamulosin and think like others on here will be taking them for some time yet.

Your husband is only six weeks on and that is still early and there must be a lot of swelling in the area that will need more time to mend and could me causing the problems.

Four months on i am still getting up a few times in the night and also have days of urgency but it is slowly getting better so give it a little time for the healing and i think a month or two on things will get better.

 

Regards John.

User
Posted 01 Feb 2017 at 15:22

Thank you very much Sandra for your encouraging words. Tomorrow we have a scheduled ct scan and a talk with the doctor who performed the procedure.

Edited by member 01 Feb 2017 at 17:13  | Reason: Not specified

User
Posted 01 Feb 2017 at 15:29

Thanks a lot John for your info. Actually, it was 5 weeks yesterday (with all the stress I lost count of days). The thing is that we were not prepared for these complications. We were told that 95% have no side effects at all or very minor ones after the procedure. So, it was a big and very disappointing surprise to say the least :(( The doctor is one of the first ones who performed these procedure in the US going back 20 years ago with over 4000 procedures done in his career. 

User
Posted 03 Feb 2017 at 17:31

Update: yesterday my husband had a ct scan. It showed no abnormality, seeds are where they are supposed to be. We also had a long talk with radiology oncologist (the one who did a procedure). We got some additional information.
It appears that first, prostate gets swollen b/c of injections of seeds. In my husband's case it was a total of 22 needles. Poor prostate :)) Then, the radiation starts working and prostate starts getting swollen b/c of radiation. Since radiation gets down to 50% after 60 days we should start see some peeing :))) by Feb. 25th. Will keep our fingers crossed.

User
Posted 03 Feb 2017 at 21:26

Good. Some reassurance and optimism.

Barry
User
Posted 04 Feb 2017 at 10:48
My OH also had brachy 2 years ago. You may find some of my other posts here. He suffered with unusual side effects. He had a radiation induced cystitis which was his worst side effects. We got told the same as you that 95% of men suffer no side effects. It has taken 2 years of trying antibiotics, anti inflammatories and even pain blockers. Then randomly a few weeks ago the burning stopped. He still gets pain in his prostate when sitting down. Also gets urgency which has got worse in the last 3 months. It has annoyingly taken 2 years to solve the burning. But I haven't heard of anyone else having problems so long after. I'm sure you'll find things will settle soon. 6 weeks is early. All the best.
User
Posted 06 Feb 2017 at 16:52

Hi, I too had Brachytherapy, 2 years ago last month. I really struggled in the first couple of months, cystitis was so uncomfortable, but thankfully I never had to have a catheter fitted apart from during the treatment. As others have said, 6 weeks is still early days and the body has to recover. Things do get better and return, not quite, to normal. I myself felt OK after around 3 months with everything working as they should, more or less. However, even now, I do have days were things aren't quite right, like having to pee much more often than normal, and I get affected by running water, seems to trigger the bladder, so I try to avoid washing the dishes lol. I am still taking one Tamsulosin a day, though my urologist wants me to try without, but its a confidence thing with me. 

He just has to be patient really, don't worry things will improve and he will wonder what all the fuss was about in a few months time. All the very best, and here's to a speedy recovery.

Alan

User
Posted 06 Feb 2017 at 18:40

"Quote" I am still taking one Tamsulosin a day, though my urologist wants me to try without, but its a confidence thing with me.


Alan, when John first stopped taking Tamsulosin he hedged his bets by carrying a couple around in his wallet.

He's never had to use them but they are there, especially if we are out and about

We can't control the winds - but we can adjust our sails
User
Posted 09 Feb 2017 at 21:30

Hi

I had low dose brachy ( 88 seeds , Gleason 3+4 , T2 , N0 , M0  ) mid 2016 and have had none of the problems you mention.

I do hope that on the 16th you eventually get the catheter removed.

I have been following all brachy posts since 2016 and yours is the first to indicate such problems.

There are 3 ways I have found to increase flow 

- Sport . I play tennis 5 times a week . After the 1st set I normally need to "go" -well.

- Hot bath . Quite effective.

- Masturbation. I hope I can mention this. So effective one can re-live the schoolboy days of seeing how far one can pee.

I suppose everyone is different but from my experience Tamulosen are not that effective.

Really hoping you improve.

 

User
Posted 11 Feb 2017 at 13:43
Alan (lyrical) my OH had to stop tamsulosin for 10 days as he had to have urodynamics done, to test his bladder. He could hardly pee at all. The urologist said the pipe through the prostate was near enough closed. His bladder isn't contracting when it needs to empty either. Though it must do sometimes as he gets really urgent and struggles to hold on. Anyway, results of urodynamics were that he needs TURP. What they don't tell you is that if you have TURP after brachy there is a very high risk of permanent incontinence. So he's been given some other tablets to take which are a combination of tamsulosin and something else.

I suspect my OH had flow problems before brachy. I've noticed other men on here have a flow test done before brachy. If the flow is slow then they don't have brachy. He didn't have a flow test. I don't think anyone has suffered as bad as he has. He seems better on these new tablets. Though the flow wasn't too bad on tamsulosin alone. Not sure what the next step is if the tablets stop working.

User
Posted 11 Feb 2017 at 14:15

You are spot on sjtb, the published criteria for brachy are:
- PSA less than 10
- Gleason 7 or less
- prostate not enlarged
- no pre-existing hesitancy / flow problems

In hindsight, I wonder if your OH was just come upon by someone who was a real brachy evangelist, more interested in getting numbers under his belt than in considering each man's best interests. You may remember that I was deeply concerned for you right at the start that your OH did not see a urological surgeon before making his decision. I might be being unfair to the specialist - perhaps he was particularly taken with your husband's responsibilities as a farmer / livestock keeper and truly believed it was the best option but you have to wonder if the motivation was his own interests rather than his patient's.

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

User
Posted 11 Feb 2017 at 17:36
Thanks Lyn I am beginning to wonder whether he should have had flow tests done beforehand. This may be why he's suffered so much. He filled in the questionnaire about water works. He thought he had no flow problems, but how does one know whether they pee slower than someone else? Ok it wasn't bad because he'd have noticed. But being a mum to 3 boys, (before brachytherapy) I would take the youngest in the ladies and my OH would go in the gents with the oldest 2. I'd come out and the 2 boys would be waiting. No sign of the OH. He'd always come out a few minutes later. When I asked why he took such a long time he'd say the buttons on his jeans take ages. But I suspect he was slow. The hospital obviously just took his word for it.

I have no idea why surgery wasn't really discussed. We weren't referred to brachy straight away. They just said as he had bowel problems brachy would be best. But they mostly encouraged active surveillance. I think surgery wouldn't have been an option anyway due to not being able to take time off. But no one asked what he did work wise.

He is definitely an unusual case as far as brachytherapy goes. I've seen people with the same symptoms but not 2 years on. I wouldn't want to put anyone else off having it done.

User
Posted 11 Feb 2017 at 20:19

I think memory is dulling as time goes on - you posted at the time of his consultation that there had been a discussion about him not being able to take time off and how physical his job is?

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

User
Posted 11 Feb 2017 at 20:50
No I can't remember either now. When we first went, the urologist said if it was him then he would go on active surveillance. He also said due to bowel broblems brachy would be the mildest on his bowels. He then passed us on to a Macmillan nurse who did go through and explain each treatment with us. Gave us all the info and sent us away. Next appointment was with a lady in oncology. She asked if we'd discussed treatments and OH said he preferred the sound of brachy or EBRT. She just said other options were surveillance or prostate removal, her next words were something like "if you choose that you'll be impotent" so it was never mentioned again. She then asked if we wanted referring to someone that performs brachytherapy and it went from there. I think if we'd asked about surgery then we would have seen someone. In hindsight I wish he'd stayed on surveillance. He would have needed treatment eventually, maybe the same path would have been taken in a few years. But he retiring from farming this year so he may have taken a different path rather than the one that took the least time out of his work.

Let's hope the new tablets are better and they work for a long time. Just got the next psa test to get through and yearly check up with the brachy consultant. (April) I know a few others that have had brachy and their psa is at 0.1 whereas OH is at 0.7 so hopefully that isn't a problem. Possibly just the fact it's been inflamed and unsettled keeping it up a bit.

User
Posted 16 Feb 2017 at 11:26

Hi Lynn,

I did not know there was a level  and that helps me as i was not sure what operation to have as the radical specialist seemed to think i would go with the robotic job and the Bracy specialist seem happy to take his route with out giving me comparisons of the cut of points,so thanks for that it rests my mind a little and stops the over thinking of did i make the right choice.

This site is really great and i try to catch up every few days to compare notes but I do hope i will be able to make more of a contribution as my journey proceeds

I am still waiting for another appointment with the specialist post app but i did get my Psa results to be going on with.

 

John.

 
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