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My journey with permanent seed brachytherapy

User
Posted 07 June 2014 10:59:23(UTC)

In the last week I undertook the procedure for permanent seed brachytherapy. I am now officially radioactive :o). Hoping to be of value to others, and to add to the experience record I have decided to write a diary;  starting with D-Day minus 2 and with frequent updates at first and then tail off to notable updates and end the saga after the twenty month notice on the radiation precaution expires. 

Before the first diary entry I thought that a background summary of how I have arrived at this radioactive sate would be in order.

BACKGROUND

I am male, 64 years old, married with three adult children. In November 2013 I was diagnosed as having prostate cancer (PrC). The cancer characteristics were: PSA 4.8, Gleason 6 (3+3) and a biopsy found <1% cancerous cells in one sample on each side of the gland. A subsequent MRI was consistent with the classification T1, N0, M0; in other words low risk and contained in the prostate gland. Urine flow, measured in February 2014, showed that from a full bladder of about 430ml I would release a volume of about 350ml. The gland was measured as enlarged and examination showed that it was firm and there was PIN.

The question was what to do. Three main options were considered. These were active surveillance (AS), radical prostatectomy (RP) and permanent seed permanent seed brachytherapy (PSB). The choice is well known to be difficult. With my wife I saw various consultants at the hospital – all were generous with their time. We had an instinctive preference for PSB and spent a lot of time talking with the PSB consultant. I contacted with the Prostate Cancer UK charity who sent me their tool kit (which is essential reading), set up a couple of telephone conversations; one with an gentleman who had elected for RP about 10 years ago and one who had elected for PSB about seven year ago. Both conversations were very helpful as they gave clear and helpful accounts of their own experiences and both were satisfied about their choice. I also launched a discussion thread on the Prostate Cancer UK social network.

The thread was well replied to by other subscribers. Some respondents offered conversation, some offered similar experience and some offered advice about coming to a decision. I found all the discussion very helpful. One respondent reported provocatively that his oncologist held that it is “bonkers” not to adopt AS until radical action becomes clearly necessary. This comment was particularly helpful because it strikes at the heart of the decision-making problem. After weeks of reflection and looking up papers and articles available on the internet and, most importantly reflecting on the difference between hard evidence (fact) and interpretation I came to the conclusion that I was faced with a ‘belief’ based decision. In reality hard information is incomplete and there is no crystal ball to help. I decided that what I believed were these things: (i) I will sooner or later have to take action against the cancer; (ii) That the cancer is presently contained within the gland; (iii) That as time passes any number of health and other factors (including economics) could obstruct the probably curative radical options. On this basis I decided to take action now rather than later; strike while I am strong and it is weak.

So what therapy to choose? The reported evidence puts RP and PSB on a par in terms of probability of curative outcome. Having watched my father in the last 10 years of his long life have to cope with a catheter bag I was influenced by my belief that I would spend less time using a catheter bag if I chose PSB. In general my wife and I have retained our instinctive inclination to PSB. That said, there was a period of two weeks where I thought I would go for RP. Anyway PSB was my declared choice at the end of April and a date, at the start of June, was set for the operation.

 

 

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User
Posted 02 September 2014 21:38:36(UTC)
D-DAY PLUS 3 MONTHS Well three months have passed. The radioactive seeds are probably down to about 1/3rd of their radiation strength at the day they were implanted. Today was the first day without the alpha blocker tablets. I am slightly anxious that the urine flow might be adversely affected - time will tell. On the subject of urine flow I can report that since my last entry it has for the most part been ok; mostly at my rated level 2 occasionally dipping to 1 and sometimes (not often) reaching 3 (see d-day plus 6 for my scale of 0 to 4). Sometimes the onset of urgency is surprisingly rapid. But all in all there is not much to complain about. I have lost no seeds and now doubt that I ever will. :o). There is no discomfort. There is only a minor weakening of erectile function but I was warned that the onset of ED tends to be a later side effect. My energy levels are as good as before the procedure. I will soon get a new PSA value and will report it in this series of notes. My next appointment with my consultant is in about one month's time. Clearly, unless the urine becomes a problem, this now just a waiting game. Last Sunday along with a few musician friends I busked in a local Abbey and collected about £40 in donations for Prostate Cancer UK. Life is really pretty good.
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User
Posted 02 June 2015 06:10:21(UTC)
D-DAY PLUS 1YEAR
When I started this thread I said that its purpose was to provide a record of my experience for up to two years following my permanent seed Brachytherapy procedure. Yesterday was the first anniversary. I am delighted that there have been fellow travellers also contributing experience. I hope that this is helpful to people considering the therapy.

My own update is as follows: The PSA value is now 0.7. Urine flow is steady at 2 (on my scale 0-4 defined early in this thread). Control of urgency to pee is much improved but the nocturnal rate is still often as high as three times per night. The threat of accidental bowel movement is still present but again much improved.. All in all these side effects are not causing me much problem.

I still need to use tamuslosin (to assist urine flow rate). I tried coming off it recently. After about 10 days of relatively weak urine flow (1 on my scale) I decided to resume taking it for the time being. I would like to come off it.

I am pleasantly surprised that I have not needed to resort, so far, to Viagra or any equivalent. I guess that says something about the accuracy of placing the radioactive seed.

One year on from the implanting of the seeds means that their radioactivity has now passed six half lives meaning that it is at 1/64 (approx 1.5%). its original strength. I have tried to discuss how much work is left to be done by the diminishing strength of radioactivity. Here I am drawing very little helpful information. I mostly discuss progress with my Brachy nurse once every couple of months. I think time has come to chat with the consultant as I would like to get more insight.

Thinking about the fact that the radiation strength is now relatively weak and given that with Brachytherapy there us no plan B other than hormone therapy I have begun to reflect on the questions: "is there enough radioactivity left to finish off the cancer?" and "how would I really know that I am winning?" Though I refuse to loose sleep on this - after all the conditions before the therapy were judged to give an excellent chance of success.

However when I try to enquire how would I know that this diminishing radiation has done its job adequately I am told that so long as PSA is going down all is ok. But that reassurance is undermined by no real understanding of the PSA bounce. This means it is near impossible to decide what PSA is small enough. And I have now been told by my nurse that the PSA can can take 5 years to settle because of the bounce effect. That was the first time anyone mentioned such a long time to me (my wife who attended all pre-procedure discussions affirms this) - talk had always been if twenty months to two years. I guess I will now do some private research.

As a final note I must stress that I am not being pessimistic in the above observations. My mental disposition is basically to trust the original pre-treatment predictions of success. Time will tell. In the meantime all the side effects seem to be improving.
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User
Posted 21 December 2015 23:24:59(UTC)

D-DAY plus 1 year 6 months and a few days

My most recent PSA is 0.57 which is a pleasing continuation of the downward trend. It is tantalising to wonder how low I might reasonably expect the PSA to be me. I tried asking my Brachy nurse But this was fruitless once the stock unhelpful answers were exhausted. Still also waiting to see if there is going to be a PSA bounce.

The bleeding in bowel movements that I mentioned in the last post became quite pronounced (bright red in the pan and on the paper). The colonoscopy I mentioned recently showed that the bleeding comes from the inside of the colon close to the implants; my Brachy nurse also reminded me that such bleeding is a possible side effect and that I was warned about it when I signed the Brachytherapy consent form all those months back. Cause for optimism is that now the bleeding seems to have mostly cleared up. Even so bowel movements are still not well formed.

Passing urine is usually OK. Mostly a reasonable flow (2 to 3 on my original 4 point scale) and this is despite having reduced my tamusolosin usage to only once every three days. I still feel that there is a scar based constriction but this is for consideration many months from now.

Regrettably my libido has taken a knock owing to the progressive weakening of erection strength over the last few months. May need to resort to medication.

Enough of the sordid details. Right now I would like to take he opportunity of wishing the community the best of season's greetings and my hope that all will enjoy a good 2016.

At the outset I stated that my intention is to keep this thread open until two years had passed. So I have six more months to go. The thread is frank in the hope that recording real experience is helpful to people wanting to understand what the journey might be like. This has been reinforced by other people (e.g Johsan) contributing frank observations of actual experience.

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User
Posted 07 June 2014 11:56:49(UTC)
I would agree in taking action whilst fit. The longer you leave it, the greater chance that something else could get in the way of treatment, and this minimises the risk of the PCa spreading. PSB was not an option for me as I went into retention after a template biopsy.

Hope all goes to plan. Keep us informed of your progress.

Paul
Stay Calm And Carry On.
User
Posted 07 June 2014 12:20:11(UTC)
HERE IS MY FIRST DIARY ENTRY
If anyone would like me to elaborate on any detail please let me know.

D-Day -2
I was required to follow a low fibre diet and begin a three month course of alpha-blockers. After about 6 hours the alpha-blocker made me feel dizzy (I also take medication to lower BP)
D-Day -1
Alpha-blocker not agreeing with me (foggy head, closed nasal passage). Took sachets of Picolex to clear the bowel. Only started doing its job at around 10pm and was still active at 6-am.

D-DAY – The OPERATION
Arrived at the day clinic at 0730. Told nurse that I did not like the effect of alpha-blockers - she and my Consultant urged me to be patient on this. My wife left for work at 0800. After final form signing, talking to the consultant & anaesthetist etc and then robing was taken to the theatre at 0830. Introduced to the team. Unconscious by 0835 and regaining consciousness by 1240. First sensation blocked nose and a feeling of having a scratched eye. At 2pm moved to my own ‘private’ room with a radiation hazard sign on the door. The physicist who had controlled the real-time imaging during the procedure came in and told me that I had been implanted with 75 seeds. She then ensured that the nurses knew how to use a Geiger counter to monitor the urine passing into the attached catheter bag. I had no discomfort of note – obviously rather groggy. I welcomed the offer of food as I was ravenous. But alas was provided with a ham sandwich, a bag of crisps and a cup cake. All I could eat was the ham as m mouth could not produce any saliva. Was taken for x-ray at 6pm. There I had to step off my bed and cross to the x-ray couch. I was a bit wobbly but otherwise OK. My wife came at 7pm with loads of fruit – just what was needed. I also ate a hospital curry – chosen as it was the only option that was fluid enough for my mouth. Watched telly. I got out of bed and walked around my cell, carrying the urine bag, for exercise. Was visited by nurse with Geiger counter several times - It is a curious thing to have a lady check you out with a Geiger counter! I read and went to sleep. All the while my urine bag was filling with plenty of urine and no escaped seeds.

D-DAY Plus 1
Slept in three 2 hour blocks. Finally woken up at 0630 when the day staff came on duty. Within half an hour the catheter was removed – not painful simply feels like a torrential pee is going on. Then started what seemed an eternity of anxiety – would I, could I pee? I drank one and a half litres of water and could produce nothing but a couple of dribbles into the provided measuring bottle. I was convinced the catheter would be reinserted. The sister came in and said actually I had produced enough to start (120ml). Then I had some tea and produced two more 140ml outputs. Oh joy! The urine was brownish at first but became increasingly clear straw coloured. No seeds lost so far.
I was discharged at 1130, armed with my plastic card that explains that I have radioactive seeds in my prostate and that I must not be cremated for 20months. My wife drove me home (20miles) and on the way needed to get out of the car and pee again – reasonably strong flow.
At home I ate some food and sat about. Then, late afternoon went for a walk around my village. Standing near our duck pond, looking at the beautiful green grass bank and yellow and white daisies I suddenly had a moment of clarity. It was very emotional. I realised how much I had suppressed my emotions over the journey so far. Just how momentous it is to take a body that is working well enough (except that it has cancer in it) and then irreversibly implant in it something that has the purpose of progressively killing off an organ. I resolved that my priorities would be in better balance from now on.
In the evening I had a wonderful meal. Sat for a bit, took my alpha-blocker, Senna and antibiotic tablets and then went to bed at 10pm. Urine flow remained pretty good. No discomfort from the location of the procedure. Slept well.

D-DAY Plus 2
Woke up at 6am, took my first antibiotic and anti inflammatory of the day. Feeling reasonably well. Beginning to get on with the alpha-blocker. Peed reasonably well, no seed. During day walked around the village. Stupidly tried to do some decorating – lifting a large wooden panel up and down stairs. Realised how stupid that was and stopped. Evening passed as on D-Day plus 1.
Had a call to my GP to discuss the blood pressure management as alpha-blockers will reduce blood pressure as well as my normal regime of Cndesartan and Felodipine. Decided to drop one of these during the three month usage if alpha-blockers – Candesartan was the first choice but might be swapped for Felodipine later depending on my daily measurement of BP.
During the day the urine flow was reasonable and clear. Passing solids was very easy as a result of the Senna - bless it. My head was very woolly and my eye-sockets were uncomfortable. I realised my decision making capacity was poor. Often walked around the house without purpose. Had periods of energy and longer periods of fatigue. Hints of ache in the thighs and buttocks – very manageable.

D-Day Plus 3
Woke again at 6am. Went back to bed. Went out with my wife (now at home ensuring I do not do any silly things) for a long morning walk around a park and arboretum. Had lunch in a café. Had noticed urine flow Ok but much thinner than yesterday. For the first time also found traces of blood and a tiny amount of fibrous tissue in the urine. Not worried as this was warned.
Afternoon very fatigued. Went to bed. Got up for evening. Routine as before.

D-Day Plus 4
Again a good night. Spend much of the day lying on bed with one walk around the village. Urine still OK but a bit thin with traces of blood. Still no seed. Passing solids effortlessly with aid of Senna. The tireness is still coming in waves but nowhere near as bad as before. Head beginning to clear. The alpha-blockers seem OK now – used with a reduction of my normal blood pressure control drugs.

D-Day Plus 5
Again good night. Urine clearer again and flow as good as D-Day plus 2. Head is much clearer. Feels as if the side-effects of anaesthetic and the new drug regime are passing (crossed fingers).
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User
Posted 07 June 2014 16:00:43(UTC)

Can you say what the alphablockers are for?  DH has high dose brachy on Monday and is already on HT.  He will hate a low fibre diet and meds which haven't been explained to him.  Might help if I can explain use first.  DH psa was 7.5 on diagnosis, Sept 2013, increased to 22, before brachytherapy due to start Jan.  On HT for 4 months, psa now 3.5.  Thanks and good luck with your treatment. 

User
Posted 07 June 2014 16:22:55(UTC)
My understanding is that the Role of the alpha-blockers is to encourage maintenance of urine flow. They expand blood vessels especially in the prostate. The prostate is relaxed.
User
Posted 07 June 2014 16:33:42(UTC)
Oh,ok. Thanks. Can see the point of that esp as he had some difficulty after Template biopsy. Will break the news to him gently. He has to have further 3 weeks radiotherapy from 24th.
User
Posted 07 June 2014 19:53:39(UTC)

Hello Kennt. My husband's journey started on Tuesday 3rd June with brachy seed implant.
He arrived at Bart's hospital at 7 and was home the same day. Haven't a clue how many seeds implanted since he didn't see the doctor again that day.
Very nice male nurse saw to him but had no information.
He was asked to pass urine before we left which he did, as well as a large amount of clotty blood. Didn't have to prove he'd been or how much he'd passed.

He was given Tamsulosin (Alpha-Blocker) and painkillers to take at home. No ill effects from the Tamsulosin and he takes no other medication at present as his 1/4 asprin for Atrial Fibrillation had to be stopped for now. No antibiotics given
No Gieger counter in this area. He was given the card to show he is radio active and can't be cremated just yet however.
We got a taxi to the station and a train and bus the rest of the way home.
He has had very uncomfortable constipation but since that was resolved he has been much happier.
There was some pain from the perineum area for a couple of days and it still hurts a bit after he has urinated. 

There is a small amount of leakage but he wears the pads or incontinence  pants I got him without freaking out about them which has surprised me, since incontinence was one of his biggest fears.
Stopped taking painkillers after 2nd day
Today is day 5 and he is starting to feel tired but he thinks that's possibly because it's been a wet miserable day and he hasn't done much but sit around at home.

Like you my husband had no previous signs or symptoms of cancer and felt very fit for a 73 year old. The knowledge that the TREATMENT for his symptomless illness will alter that has really frustrated him.


Good luck on your journey. Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 June 2014 09:26:52(UTC)
Hello Sandra. Thank you for your contribution regarding your husband. It is interesting to compare and contrast our experiences so far. It seems that so far I am having an easier time. I feel that being kept in overnight was a good thing. It was a good protected period which helped me to get over the procedure and brace myself for the uncertainty of what will follow. It also gave me more contact time with the brachy nurse and my consultant - I was able to look at the x-Ray showing the implanted seeds standing to attention and also confirm details of what to expect. Having the catheter installed overnight allowed a good night and being required to demonstrate that I could pass an adequate volume of urine once the catheter had been removed, though it made me anxious,I believe is a good precaution. This practice of turning the process into a two day one is a new approach by my hospital and I am convinced that it makes sense.

I have experienced no incontinence so far; though the peeing flow rate is variable from day to day. The nightly Senna tablet has ensured an easy passing of solids. I have no significant pain or such discomfort. The main problem for me so far has been the general cycle of fatigue and a fuzzy head making me feel a bit disconnected at times.
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User
Posted 08 June 2014 09:38:51(UTC)
D-DAY plus 6: I was over optimistic on day 5 - the urine flow is less good, though adequate, and it still contains small traces of blood. Bowel movements continue to be good. Last night was a bit restless. No pain but thighs and perineum region remind me that I undertook the procedure by gentle aches and mild soreness when sitting on a hard chair. My head is a little clearer and perhaps the sense of fatigue has improved a little also - but it is definitely still there. I have avoided driving a car so far and I consider that I am still not ready to drive. The alpha-blockers are not troublesome any more. I have completed my course of antibiotics.

Outside the brachytherapy issues is the subject of my blood pressure control. I mentioned on day 2 that I would reduce my normal regime of Candesartan and Felodipine to only one and carefully monitor my BP. I had been taking Candesartan and blood pressure control was OK. I will now try Felodipine alone and observe the difference.
User
Posted 16 June 2014 20:47:09(UTC)
D-DAY Plus 2 Weeks
Two weeks have passed since the brachytherapy procedure. From the beginning of the second week my head felt much clearer - almost to the level preceding the procedure. So I guess the effects of anaethesia and changing to the therapy drug regime (including alpha blockers) have worn off. So far as I can tell none of the brachytherapy seeds has been discharged.

As the second week progressed the fatigue cycles have receded and barely affect daily life. I have taken lots of walks along the coast, over heathland, around my village. I have also returned to work but take care not to overdo things.

On the request of the nurse practitioner I had a PSA measurement taken during week 2. The new value is 13.5; up from a 4 7 typical in measurements over the year before the procedure

I have abstained from any alcohol since D-Day day minus 2 but have partaken over the last three days. I have taken few glasses of watered down white wine. No obvious side-effects but neverthelessI will now avoid any alcohol for the next week.

The quality of passing urine deserves comment: In order to chart progress I have devised a scale for myself using values 0 to 4. It is very qualitative with rough descriptions of the values as follows: 0 means no flow; 4 means full flow as I remember it as a young man; 3 means slightly limited flow that had become the level before the procedure (emptying 350ml of a 430ml bladder in about 10 seconds); 2 means more limited, thin flow (emptying unto about 200ml and feeling sometimes that more should be passed), very limited, thin flow (emptying up to 100ml and needing to return soon to the toilet).

Over the last two weeks I have always been able to pass urine but the flow has been variable. In the first week the flow was mostly 3 and sometimes 2. This last week it has been more variable. Mostly 3 but more 2 and occasional 1. I do not feel worried about the variation as I was warned of it and there is no discomfort. I usually get up about twice in the night and this is OK. Over this second week there has been no evidence of passing blood in the urine. Usually over the last week the urine has had the expected light straw colour.

I have found that drinking some "builders" tea or coffee in the morning helps the urine flow.

Tomorrow I will take the last senna and anti-inflammatory tablets - the alpha blocker will continue for a couple of months yet. I am a little apprehensive about the stopping of senna as the passing of solids has been easy and regular and I do not want to suffer any bowel problems.

All in all I feel things are going well and well able to get on with normal life. Otherwise I guess I must now wait for the short and long term onset of brachytherapy side-effects.
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User
Posted 17 June 2014 06:32:22(UTC)
Thanks for the update Kennt.
It makes for interesting reading and allows me a comparison with my husband who is also 2 weeks post D Day.

He had suffered from constipation immediately afterwards but once resolved he was comfortable. Having said that, it now appears that during the day he gets an urgent call and has to dash.

Mild incontinence finished and back to normal.

I do agree with you that an overnight stop in hospital would have been better.
It was convenient from one point of view as we live in Essex and the procedure was at Barts in central London, but for me, I think I would have preferred to make an extra visiting journey and have reassurance that all was well.
He would not, for instance, have suffered the constipation had he had an overnighter, or at least it would have been resolved more quickly with hospital advice and help.

Glad all seems well with you.
Normal life has also resumed, although tiredness after exertion is now kicking in and he has to nap more.
Our post op visit is 1st July where I am hoping to update my "records" and find out how many seeds were inserted.
We can't control the winds - but we can adjust our sails
User
Posted 17 June 2014 08:54:50(UTC)
Hi Johsan: thanks for the comment. Glad all is going reasonably well for your husband. Your comment "I think I would have preferred to make an extra visiting journey and have reassurance that all was well" is exactly how my wife felt.
User
Posted 25 June 2014 16:03:18(UTC)
A note on driving: After D-day I was unfit to drive for a week. Probably my reaction the the anaesthetic. I tried driving on day 8 and found myself driving very cautiously. By day 10 my driving was normal.
User
Posted 30 June 2014 15:21:55(UTC)
D-DAY PLUS 4 Weeks
It is now four weeks since the procedure. At the start of week 3 I was felling very confident. A pattern was emerging: feeling reasonably energetic in the morning and certainly able to work well; in the afternoon feeling very fatigued and recovering a bit in the evening; Urine reasonable (grades 3 and 2 on my scale defined earlier); Passing solids ok even though I had come off the senna tablets; No seeds passed.

But by the end of week three things were less rosy: I was making frequent visits to the toilet and it was very uncomfortably trying to pass urine; Nocturnal visits to the loo rose from twice after retiring to about five times; The urine flow was down to 1 and occasionally 2 on my scale; The urine appeared like a peaty malt whiskey; I had a neck ache and general ache at the back of my head - feeling like a band was tied around it. I was very concerned about this. I resumed taking 400mg ibuprofen tablets in case there was an inflammation limiting urine flow. I was feeling generally mildly disoriented. By the beginning of week four I was returning to the earlier state as at the beginning of week 3. It seems clear to me now that I had developed a lower UTI. I am pleased to say that my body seems to have coped without taking more antibiotics. I did however greatly increase my daily water intake.

Over the weekend I honoured a commitment to play my trombone in a big symphonic concert (Mahler 5) and this was revealing. My concentration and focus were very poor. I realised that I am still far from being mentally back to my pre-operation state. I also became very tired and ached in the perineum region.
Next day after a long lay-in I went on a 6 mile country walk. Felt ok on the walk but muscles ached afterwards - with more in the perineum region. Nevertheless nothing difficult to mange with. The day after the walk my urine is better but still not clear (slightly green tint to the expected straw colour) and the flow is mostly 2 on my scale, sometimes reaching 3.

Tomorrow I go for my post op CAT scan and will have a chat with my brachytherapy nurse.
User
Posted 30 June 2014 19:28:56(UTC)

Thanks for the update Kennt
It helps make a good comparison with John who also goes for his post procedure scan tomorrow at Barts in London.
It is exactly 4 weeks today since the seeds were implanted.

Actually, I have just read out your post to him (he doesn't come on here) and he was relieved, I think, to hear that you too have had tiredness and concentration problems. Silly things really. He got in a panic last week in a shop because he couldn't do something as simple as putting 4 rolls in a bag. I'd wandered off and didn't notice at the time but saw he was flustered when he came through the checkout but he has only just told me how bad he felt. To the extent apparently that the young checkout assistant asked if he was alright.

I have been trying to tell him for the past couple of weeks that it is only to be expected, more so now that the seeds are proving they are working.

I'm only his wife of course and haven't gone through it so someone such as yourself is a great help.

Like you, urine is dark coloured and sometimes slow apparently (now, until I read him your post he didn't discuss it with me although I had been thinking he was sometimes a long time in the loo!)

Night times though he is pretty good, sometimes he only gets up because I have. Probably 2 or three times a night.

He is, however, having problems with loose bowels. He refuses to ask the doctor for anything as he says it's preferable to constipation. It is becoming restrictive however, since he is reluctant to go too far and needs to know there are toilets there.

We have been for a very long walk today, taking our daughter's two dogs and although tired afterwards, has had no discomfort in the perineum area as you describe.
In fact he has been lucky like that. The perineum discomfort passed off very quickly and no painkillers have been taken since he got home from hospital discharge.

Onwards and upwards eh. Thanks for the post. It was very helpful. Because of it I found out things I didn't know!!
Good luck tomorrow.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 June 2014 23:17:02(UTC)
Thank you Sandra. I am delighted that we are able to share our two perspectives on this parallel journey. Your kind remarks reassure me that there is value in recording a candid account. Good luck for tomorrow.
User
Posted 01 July 2014 15:02:16(UTC)
Back from the CT scan Kennt and John did at least remember to ask how many seeds were implanted as we hadn't been told.
Apparently he has 58 so not too bad.

Won't see the consultant's team until September now unless anything untoward shows on the scan that is.
Good luck with yours.
We can't control the winds - but we can adjust our sails
User
Posted 02 September 2014 21:38:36(UTC)
D-DAY PLUS 3 MONTHS Well three months have passed. The radioactive seeds are probably down to about 1/3rd of their radiation strength at the day they were implanted. Today was the first day without the alpha blocker tablets. I am slightly anxious that the urine flow might be adversely affected - time will tell. On the subject of urine flow I can report that since my last entry it has for the most part been ok; mostly at my rated level 2 occasionally dipping to 1 and sometimes (not often) reaching 3 (see d-day plus 6 for my scale of 0 to 4). Sometimes the onset of urgency is surprisingly rapid. But all in all there is not much to complain about. I have lost no seeds and now doubt that I ever will. :o). There is no discomfort. There is only a minor weakening of erectile function but I was warned that the onset of ED tends to be a later side effect. My energy levels are as good as before the procedure. I will soon get a new PSA value and will report it in this series of notes. My next appointment with my consultant is in about one month's time. Clearly, unless the urine becomes a problem, this now just a waiting game. Last Sunday along with a few musician friends I busked in a local Abbey and collected about £40 in donations for Prostate Cancer UK. Life is really pretty good.
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User
Posted 05 September 2014 07:30:45(UTC)
In my last post, three days ago, I mentioned that the three month course of alpha blockers (tamusolosin) had just ended and I was a little anxious about the impact on urine flow. Well as it turns out there has been a negative effect. Flow is now thin and slow (I would rate it at a level of 1 in my scale of five levels 0 to 4) and the colour is often but not always rather dark. I do no seem to be suffering any adverse consequences of this except the bother of spending a long time over the loo each time I urinate. This is something I will of course keep an eye on but if possible will avoid requesting more alpha blockers. I guess there is a constriction of the urethra owing to swelling in the prostate area and hope that over time it will ease.
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User
Posted 10 September 2014 06:38:42(UTC)

Following my note of 5th September, the limited flow of urine threatened to become serious. In order to avoid risk of needing catheterisation I have resumed taking the alpha blocker tamsulosin. I have been back on tamsulosin for two days and the urine flow is reasonable again (level 2) on my scale. My GP has said that I might need to take it for some time yet. My Brachy nurse told me few men come off the tamsulosin successfully at three months; six months or longer is not unusual. My impression now is that from time to time I should experiment for a few days and see if the tamsulosin is still necessary.

User
Posted 19 September 2014 10:16:01(UTC)

Here we are Kennt, the usual week or so behind you.

We went to the Royal London yesterday for John's first follow up.

Most things seem to be going well, apart from some burning/irritation around the back passage.

John was asked to do a flow test and that wasn't so brilliant.  Apparently the flow gets slower and slower the further away from the Tamsulosin that he goes and by the evening and overnight it's not too good. John also has to get up 3/4 times a night sometimes.

He has been advised to double the Tamsulosin for now and arrangements will be made for an appointment, back at the Royal London, for a camera in place to check whether there is a small stricture or whether it is still just the result of the prostate being  swollen. If it is a stricture then it needs to be released so Fingers crossed.

I did ask the doc if it could be done at the same time as the camera, only it's a bit of a trek by train and tube.

He said it could but it would depend on how brave John was as the camera is only done by local anaesthetic!! He also added that if it was a small stricture then the actual procedure of putting the camera down might stretch it enough anyway.

He's also taken blood for PSA and will post the result to us. I did ask what the test was likely to show as it is still early on from the procedure and surely not likely to have dropped much yet. He said it was surprising and might drop quite drastically but in any case it was just to obtain a "base line" for further tests in the future.

 

I was also able to satisfy my curiosity regarding one  of the differences Kennt between yours and John's procedure ie John's lack of antibiotics afterwards. He said that some would have been administered in theatre and that would have lasted around 4 hours and then it wasn't considered necessary for after that. I found that odd, bearing in mind the area involved for insertion and the small wound/punctures. As it happened all was well.

John only had 58 seeds inserted and that was apparently because of the size of the prostate but he assured me that 58 would be sufficient.

Hope you are continuing well Kennt and best wishes to anyone else undergoing/having undergone this particular treatment.

We can't control the winds - but we can adjust our sails
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Posted 19 September 2014 10:36:19(UTC)

Hi I have read your journey on your seed brachytherapy and found it very informative if I am given this option I will have a idea of what's to come thanks

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Posted 02 October 2014 22:34:22(UTC)

D-DAY PLUS 4 MONTHS: Now the seeds have been in place for two half-life periods and so they are down to 25% of their original radiation strength. Still presumably a significant presence in my body. I feel for the most part quite well (apart from rotten side effects of a combined flu-vac and pneumovcoccal vaccine). My work and social lives are not significantly affected by the brachytherapy. I play my trombone regularly. HOWEVER I have some growing concerns about urination and possibly long term bowel issues.

In an earlier post I told of my experience of comming off tamsulosin. After one week I had to resume it. However my urine flow is rather weak (barely 1 on my scale 0 to 4). I am managing to pass an adequate volume of urine each day but the process is very slow and frequent. I can coax the dribble into a brief reasonable flow by rubbing the penis but there is no escaping the fact that the pressure is very low. If I try to ‘push' using internal muscles there is no improvement. In fact this brings a danger of premature minor bowel movement - which has happened once.

There is also a strong urgency about the urine flow. It is hard to control and has led to minor leaks. However it seems that I am getting the better of this by renewed concentration on the relevant muscles.

A note to Johsan: I read your note of 19th September. On the whole things seem to be going well. That’s good. The problems being experienced seem to echo mine. Perhaps not identical but certainly the same kind. I am seeing my consultant in two weeks and will report more then.

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Posted 08 December 2014 10:38:00(UTC)

This post by Johsan on 01 December 2014 18:15:55 has been merged with this conversation at the request of member who started the thread.

----

Thanks for the update Kennt. I was wondering how you were getting on.
It's odd isn't it that we have a National Health Service and yet they vary so much in their treatments nationally.

Your original treatment as I remember it, was an overnight stop, antibiotics to take home and a Geiger counter.

My husband on the other hand, just a few days after yours and at a different hospital, had none of that, and yet at his meeting with the actual consultant in late October, the consultant was concerned enough by the reduced flow to persuade John to have a flexible cystoscopy where he would also, if he could, stretch the bladder neck if there was a (mild) stricture.

John hadn't even thought the reduction was that bad, he thought the flow test at the hospital was reduced because they didn't give him enough time between drinking the water and doing the test. He usually gets up at night a couple of times

I'm glad to see your PSA is down to 1.4. John's was 1.8 following the brachytherapy and we were really pleased with that.
We are aware that there will be a "bounce" in a year or twos time so won't panic (I hope!) if and when that happens.

The only real problem that John mentions to me is a burning pain around the back passage, especially after peeing, which isn't when I expected him to say.

He is currently having some complementary aromatherapy sessions via our local hospital.
We received an invitation some weeks ago to attend our local YMCA where various sections of the health community dealing with Prostate Cancer were offering advice.
We went together, and one of the things on offer was complementary therapy. Starting with his feet and progressing to head and shoulder massage.

I'm sure he thought it was going to be a waste of everyone's time but he comes out with tingly feet and when he gets home he flakes out for an hours sleep.

Keep posting. It's good to compare notes like we did before.

All the best Sandra

Edited by member 01 December 2014 18:17:34

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Posted 08 December 2014 11:18:45(UTC)

Note: This entry is slightly out of sequence it preceded the previous note by Johsan

D-Day Plus 6 Months

My implanted radiocative seeds have now completed three half lives and so are at 12.5% of their original radiation strength. In October I reported that I am experiencing problems in regard to urine flow. Over the two months since October I have needed to get up and pee about four time on most nights. Therefore I am often a bit tired.

I had an appointment to see my consultant but instead saw a registrar. It would seem that my case is progressing routinely from a medical perspective. The PSA was down to 1.4, the lowest so far, and the registrar said that was good. However agreed that bearing in mind the fact that I have yet to pass through the PSA bounce (possibly still a year off) I is not really possible to infer much from the value other than it is deemed good that, so far, the value has been shrinking. We discussed my concerns about urine flow and he said that should any minor surgery be needed it would usually be delayed until the brachytherapy had effectively ended.

The meeting with the registrar was very brief and since I learned nothing new from the registrar I opted for my reviews to be held by telephone with my brachytherapy nurse. Then if anything interesting arises I would arrange to see the consultant. This policy would save time and travel.

The peeing problem is my main concern. At the beginning of my original conversation thread I defined a scale of ruin flow (4 = strong flow, 0 = flow very poor neediong attention). On this rough scale I have over the last few months been between 2 and 1. More often closer to 1 and right now I would rate it at 1. It is perfectly liveable with but very inconvenient at night as frequent trips to the toilet seem necessary. there is little hope of me coming off the Tamsulosin (alpha blocker) any time soon..

User
Posted 07 January 2015 21:07:50(UTC)
D-Day plus 7 months
Happy New year to all readers.
The urine flow is still poor (rate at 1 on my scale 0 to 4). I expect to be relying on Tamusolosin for many months yet. I still feel that there is a risk of causing a bowel movement when trying to pass urine - indeed there was one minor accident causing me to change my underwear. Also there are occasions where I have excessive wind. This is historically unusual for me but still only has a circumstantial connection to the therapy.
Reassuringly news the PSA measured in December was 0.9 - though it is still a long time before the PSA bounce effect will be passed and the truly important measurements begin.
User
Posted 07 January 2015 22:12:51(UTC)

PSA is moving in the right direction. Hope the peeing improves.

Paul

Stay Calm And Carry On.
User
Posted 08 January 2015 06:28:05(UTC)

Glad the PSA is at last moving downwards Kennt, even if the after affects are a nuisance.

John's next appointment isn't until February.

He is still on Tamsulosin and he is careful when he takes it. Today, for instance is our youngest grandchild's 14 birthday so we will be going there after school. Before that we are off to the pictures and then a quick meal and he won't want top get taken short.

So far night time isn't too bad, although he has his moments.

Bowel area pretty uncomfortable with a burning discomfort but he say it passes off after a while. Worse after a bowel movement.

Still, it all  proves the treatment is working, hopefully on the bad bits as well as the good! We too are prepared for the "bounce" so hope we remember that's what it is when it happens and don't panic.

Will keep you posted Kennt.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 February 2015 16:15:45(UTC)

D DAY PLUS 8 Months
The seeds have now been in place for four 'half-life' periods and so they are down to 6.25% of their strength at the time of implant.

Over the last few postings I have expressed concern about peeing. I have a scale 0 to 4 which I explained earlier. I have been troubled that my urine flow has been at level 1 and I have found it necessary to make frequent visits to the loo. Wel things have improved over the last month as the level is now more often at 2 on my scale and I do not need to make such frequents visits. However I also find that the onset of urgency is rapid. I also fnd that I often need to pee a second time within a minute or so of the first.

Another issue I have mentioned over the last few postings is bowel movements. These have been for the most part good and healthy. However the faeces are slightly softer than usual and I make more bowel moments per day than I used to. On two occasions in the last four months I have had sudden diarrhoea. Also on two occasions over this time I have had an involuntary minor bowel movement while peeing and have needed to change underwear.


I asked for a new PSA measurement a week ago. It came out at 1.1. The previous measurements since the implanting of the seed have been showing a nice downward trend 13.5, 1.4, 0.9. This new value of 1.1 bucks the trend! Rationally I know very well that there will be highs and lows around any trend. Rationally I also know that whilst a downward trend is comforting the values that matter are those after the so called PSA bounce. I do not believe that the bounce is happening yet (probably many months away). It is a curious thing that despite all this rational appreciation I feel an emotional disappointment.

If asked to summarise how things are going I would say well. The urine flow and bowel issues are not causing me and significant issues. Life goes on substantially as normal for me. The PSA trend, despite the emotionally disappointing last measurement, seems to be a good one.

User
Posted 07 February 2015 11:01:35(UTC)

~Good to hear from you Kennt. I was wondering how you were getting on.

Odd about the increase though. John's last PSA was 1.8 (I think). As the hospital cancelled his February appointment and have put it back to May we are a little behind.
John went to the GP Friday to ask for a PSA to be done.
He took the cancellation letter with him just in case he needed to "prove" his request.
Not our usual GP but very understanding

John also asked for a repeat of the Sildenafil prescription and the conversation went something like this

Doctor: Hmm. Yes they are really cheap now aren't they?
Can I have 200 of them then please
What?
Well enough to take me up to Easter
Blank silence
Well Easter 2020 that is.
Thank goodness for that. I was going to put an ambulance on standby!!

Will post once we get the results.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 February 2015 12:06:34(UTC)

Hello, I have read some of this out to my other half as he is 4 and half weeks after brachy. It was interesting to see you have had the burning in the back passage. He keeps complaining of this, did either of you also get burning when urinating? Other half says it is like weeing water from a kettle, also he gets a lot of pain deep inside especially after going to the toilet (bladder and bowels) but often he is just sitting watching tv in the evening and he starts lifting himself off the chair as he gets such a pain inside, says it spreads down to the tip of his penis, then after a while passes. I can't find anything on the internet about these side effects, it says the burning will ease after a week. The gp gave him some antibiotics last monday just incase it is an infection, but made no difference as yet.

We have 3 friends that have had brachy with no side effects at all, so that causes us concern, that is why I have asked if either of you have had similar. He was glad someone else has the urge to open the bowels when peeing (well, not glad, I just mean nice to know it is probably a common problem) He opened them 2 or 3 times a day before brachy, but now a lot more including during the night. 

As for the bladder, as I said it always burns, some days he does a normal wee, with a lot coming out, sometimes he goes every 10 mins or half hour and just gets drips. We can't really find a pattern to it. (caffeine free drinks, doesn't drink alcahol) Some nights he has been up 5 or 6 times, other nights twice. He never got up in the night before brachy, so maintaining a full time job, sometimes getting up at 5am is hard. 

Hoping perhaps the consultant will help at the 6 week check.

Anyone have any tips? Thanks.

User
Posted 07 February 2015 20:02:32(UTC)

Can't offer any tips unfortunately sjtb. Have just questioned the other half for you re the peeing and he says yes, when he strains to get the last drop out he also gets the burning then but not during peeing.

As John is on Tamsulosin (when he takes them that is - he's decided to take them every other day. That's because I got cross that he isn't taking them as he should be and he insists he doesn't need them so it's a compromise, a sop to me really to shut me up!) he can be up and down to the loo, including during the night.

He does drink beer sometimes but it doesn't seem to make a difference.

He does, however, drink a lots of cranberry juice. Has done for years, not just because of PCa
He won't take Tamsulosin at all if we are going out.

John did mention the burning to our GP some weeks ago and he gave him cream which he says helps a bit.
Fortunately, the burning isn't continuous and eases after a short while.

As he is 7 1/2 months post procedure the internet is slightly misleading in that John is still suffering so it isn't just for a few weeks.

 

We are all different so presumably we all react differently to operations and medication.

We can't control the winds - but we can adjust our sails
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Posted 08 February 2015 00:49:15(UTC)

Hi Sjtb
I have never experienced a burning feeling. What I did experience, when I tried to come off Tamusolosin after three months, was a kind of burning feeling in the penis when trying to pee. But this seems different. I believe Johsan's partner has experienced the burning you report.

I sympathise with the problem of the frequent urge to urinate. As you may have noticed this problem has been a recurring theme in my reports. Like your partner I have recently been avoiding caffeine and alcohol. I think that this has contributed to some recentt reduction in frequency. Indeed I am sometimes (maybe three times a week) getting five hours of unbroken sleep at night. My hope is that this is part of a lasting trend. Perhaps this gives you some encouragement that things might well improve significantly - but remember I am about 7 months further on.

The tendency to open the bowels when peeing does not seem to be raised often as a side-effect in the general literature that I have read. But for your partner and me it is real enough. One reason I started this thread of posts was to capture a log of experience. It is great when others relate theirs to mine. Hopefully, in addition to helping us along our way, it will be of some help others who want some idea of what they might be signing up to.

Best wishes. I look forward to hearing how things progress.

User
Posted 08 February 2015 00:56:16(UTC)
Hi Johsan
Good to get your update. I much appreciate the surgery humour. It helps get us all through.
I am being philosophical about the slightly raised PSA for all the reasons expressed in my earlier post. But it does niggle at one. I will ask for another test in two months. I am due for a conversation with my Brachy nurse soon. I will report what she has to say.
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Posted 08 February 2015 14:01:21(UTC)

Hello, thanks to you both. It is definitely good to read what others have been through. I wish more people would write their experience, good and bad, I have not found much information from real people. We are looking forward to seeing the consultant in the hope he can shed some light on the burning and the pain inside. After the biopsy he had an MRI which showed prostatitis, caused by the biopsy, he had 6 weeks of antibiotics which reduced it a bit, I think this maybe the cause of the pain inside as he thinks it never really cleared up.

We can only wait now. Best wishes to you both.

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Posted 12 February 2015 18:07:24(UTC)

Just a quick update. John waited until I went out today and then rang the surgery for his latest PSA result. Latest figure is 1.6 down from 1.8
Not as low as I had hoped it would be but according to John, it's going in the right direction so why fret.

We can't control the winds - but we can adjust our sails
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Posted 12 February 2015 19:02:46(UTC)

Hi all, just wanted to add my experiences so far on the after effects of Brachytherapy. I had my implants 2 weeks ago and for the first week I was not too bad apart from uncomfortable when sitting due to the bruising. This second week I have found it very painful to pee, like passing broken glass at times and certainly brought tears to my eyes. I also experienced a pain in the rectum but that has settled down this week. I am taking Tamsulosin as directed plus Paracetamol & Ibuprofen for the pain. I have also been drinking Cranberry Juice and this seems to ease the cystitis. I have only been waking twice a night to pee and twice I have managed to sleep all night which I am pleased about. In the morning before breakfast I have to dash to the loo to empty my bowels as a matter of urgency, then after breakfast I have to go again. Often during the day I feel the need to go when peeing but when I try nothing happens. My flow rate is usually around the 3 to 4 mark, using my scale of 0 for nothing and 5 being pre-op. 

It seems everyone has similar symptoms with some more severe than others. I do question some of the post's I have read and the info on websites that you should be able to return to work within a couple of days, I certainly wouldn't have been able to. You would have to have a very understanding boss with all the trips to the loo.

I now wait to see what the third week brings me. Onward's & upwards as they say. Take care everyone.

Alan

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Posted 12 February 2015 20:03:36(UTC)

Hello lyrical. Yes you have similar symptoms to my other half, for some reason his seem to be gradually getting worse. Hoping all will be revealed next week when we see the consultant. My other half had to return to work but is a farmer and works for himself, he can pee outside!! Had he been a bus driver or something it wold have been difficult! He has also had 4 or 5 seconds notice of a wee on a number occasions and literally just got it out where he was (luckily not in Tescos!) that shocked him as he had no problems before brachy. I hope you continue doing well.

Johsan is that about normal for psa a few months down the line? I thought it would go down more, but I have heard it will take a year or so. We are having one next week, as his prostate is very painful I expect the psa to be high, not too sure why they have to do it so soon. I have read that some hospitals don't take a psa reading for a year after brachy. 

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Posted 02 June 2015 06:10:21(UTC)
D-DAY PLUS 1YEAR
When I started this thread I said that its purpose was to provide a record of my experience for up to two years following my permanent seed Brachytherapy procedure. Yesterday was the first anniversary. I am delighted that there have been fellow travellers also contributing experience. I hope that this is helpful to people considering the therapy.

My own update is as follows: The PSA value is now 0.7. Urine flow is steady at 2 (on my scale 0-4 defined early in this thread). Control of urgency to pee is much improved but the nocturnal rate is still often as high as three times per night. The threat of accidental bowel movement is still present but again much improved.. All in all these side effects are not causing me much problem.

I still need to use tamuslosin (to assist urine flow rate). I tried coming off it recently. After about 10 days of relatively weak urine flow (1 on my scale) I decided to resume taking it for the time being. I would like to come off it.

I am pleasantly surprised that I have not needed to resort, so far, to Viagra or any equivalent. I guess that says something about the accuracy of placing the radioactive seed.

One year on from the implanting of the seeds means that their radioactivity has now passed six half lives meaning that it is at 1/64 (approx 1.5%). its original strength. I have tried to discuss how much work is left to be done by the diminishing strength of radioactivity. Here I am drawing very little helpful information. I mostly discuss progress with my Brachy nurse once every couple of months. I think time has come to chat with the consultant as I would like to get more insight.

Thinking about the fact that the radiation strength is now relatively weak and given that with Brachytherapy there us no plan B other than hormone therapy I have begun to reflect on the questions: "is there enough radioactivity left to finish off the cancer?" and "how would I really know that I am winning?" Though I refuse to loose sleep on this - after all the conditions before the therapy were judged to give an excellent chance of success.

However when I try to enquire how would I know that this diminishing radiation has done its job adequately I am told that so long as PSA is going down all is ok. But that reassurance is undermined by no real understanding of the PSA bounce. This means it is near impossible to decide what PSA is small enough. And I have now been told by my nurse that the PSA can can take 5 years to settle because of the bounce effect. That was the first time anyone mentioned such a long time to me (my wife who attended all pre-procedure discussions affirms this) - talk had always been if twenty months to two years. I guess I will now do some private research.

As a final note I must stress that I am not being pessimistic in the above observations. My mental disposition is basically to trust the original pre-treatment predictions of success. Time will tell. In the meantime all the side effects seem to be improving.
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Posted 02 June 2015 09:57:47(UTC)

Glad to see your post Kennt.

Our first anniversary is tomorrow. We however have already seen our consultant and I have already posted somewhere on the result of that visit.

The differences between your treatment and John's is very marked. You had antibiotics we didn't. You had an overnight stay, you were advised about constipation, we weren't.
We did have a nurse at the start but have never been advised to keep in touch.

The only time I tried it the language barrier meant that I couldn't get the chap to understand what I was asking and he got the complete wrong end of the stick!

John's last PSA was 0.9 which was excellent BUT like you we are confused about the expectation of the bounce. We took that to mean it would go up for a short while then come down again pretty promptly.

Apparently (well according to the young chap we saw) it will rise and continue to rise. That to me is not a bounce. What goes up should rightly also come down if it's part of a bounce.
I'm now assuming that it's unlikely to go any lower and we should, in fact, not be surprised if it goes up and continues to do so.
I'll be dead chuffed if it does drop a bit more though.

Your nurse says it can take 5 years to settle the bounce effect. We have been told John will be monitored for 5 years, but there was no reference to the monitoring being to check the bounce. Logically speaking, of course, they'll be regular blood tests so I suppose they'll keep their eyes on it.

I would be very interested in any results from your research Kennt.

As for your final note - well, I'm over the shock of being told the procedure would merely "hold" the cancer in check and wasn't a cure and,like you, we shall move forward on the basis that we have our life back, albeit slightly different from what it was previously.

Good to hear from you.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 June 2015 21:05:00(UTC)

Hi Kennt

Thanks for posting your progress on here, I find it most helpful to compare your experiences with my own. I am now a little over 4 months since my implants and, touch wood, I am pretty much back to "normal" and starting to enjoy life once again. I do need the loo more often during the day than before but nothing I can't cope with. During the night I usually have to visit once or twice, although I have had a couple of uninterrupted sleeps. I am still taking one Tamsulosin a day but am eager to reduce that to every other day to see what effect it has. My consultant told me to try this when I felt ready. Since the implants I have been drinking decaff tea & coffee and have avoided alcohol altogether but I was recently informed that even though they are labelled decaff they still contain caffeine, so I have now switched to Red Bush. In the bedroom department all seems fine apart from when ejaculating which is sometimes dry, sometimes not. And occasionally after ejaculation I experience a pain in my perineum area which lasts around 3/4 minutes. Its a little off putting but I grin and bear it. On the plus side there is no arguing about who sleeps on the wet patch, lol.

At my 6 week check up my PSA was down slightly to 5.0 from 5.8. I was disappointed with that but the consultant assured me things were progressing as planned. I have another check in September so hopefully it will have reduced quite a lot by then. 

I did ask my consultant about the bounce but she didn't really go into too much detail so I suppose I will just have to see what happens in the next couple of years. I also asked the question "What happens if it doesn't work" and her answer was "It will" so I have to trust her on that. 

Thanks again for your update and if you do find anything about the bounce in your research please let us all know.

Take care, Alan

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Posted 02 June 2015 22:39:05(UTC)

PSA bounce after brachy is usually seen at the 18-24 month point, is short-lived and should be no more than a rise of 0.5 or 15% of the starting PSA.

So in theory Kennt, your PSA is rubbing along at the moment and sometime this winter you may find it jumps by half a point for a short while and then settle back to where you are now. After the two year mark, three consecutive rises or a rise which is sustained for a long period could indicate a recurrence and would need to be discussed with the onco.

It doesn't help us that medics use language that sometimes isn't precise. In oncology circles, the phrase 'PSA bounce' is specific to brachy but there has been some data suggesting that it can happen about 9 months post IMRT as well.

Alan, are you on HT?

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


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Posted 03 June 2015 08:03:45(UTC)

It really doesn't help that doctors can't give a definitive reply to a straight question. Admittedly the doctor was very young and did say he was a trainee surgeon so perhaps his knowledge of brachy as limited (which in itself is worrying since he was there to check up on us)

Seeing your reply Lyn I have just asked the other half if he remembers what was said at our meeting regarding the PSA starting to rise and then go down because of the bounce effect.
Like me he heard the doctor say that the PSA will now continue to rise because this was not a cure, merely a holding off exercise and we both understood him to mean that it doesn't come down again.

Today is our first anniversary of the procedure and last night John was really down, not usual in my normally upbeat man.

I've had to do the usual reminding of where he might have been if cancer hadn't been discovered when it was.
At procedure time PSA was 6.3. Un-diagnosed and a year down the line it would have been a lot higher and the prognosis a lot worse. Certainly we would have been unlikely to have been able to have Brachytherapy.

I have also pointed out to him just how lucky he/we are compared to others and he's come round a bit.
Hopefully he will cheer up today. Hope so. We are supposed to be off for a 5 day camping trip tomorrow. Don't want to sit in a wet tent with a grump!

We can't control the winds - but we can adjust our sails
User
Posted 03 June 2015 11:51:27(UTC)

Hi Lyn

No I am not on HT, just had the Brachy back in January and now playing the wait & see game. I don't really worry about the cancer returning as there is no point worrying about things that may or may not happen, plus whatever treatment we have there is always the chance it could return. I was surprised to read Johsan's post that their doctor said Brachy was not a cure as that contradicts everything I was told in Leeds pre treatment. 

Johsan, I was a little bit down last week when I found out my wife's cousins husband, who had a radical prostatectomy 4 weeks ago, seems to be recovering a lot quicker than I did. He went to the cinema after 2 weeks and has returned to work, light duties, already. I began to wonder if I had made the correct choice. But then, everyone is  so different so I may not have recovered so quickly as he has. You are correct when you say we are luckier than many men who are diagnosed too late and should be thankful for that at least.

Enjoy the camping trip and it looks as though you will be OK with the weather, heatwave starts today?? Or so they are saying.

Take care

 

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Posted 03 June 2015 12:43:47(UTC)

 

Quote from nhs/uk : "Sometimes men may experience a rise and fall in PSA at around one to two years after treatment.
This is called ‘PSA bounce’ and does not mean that the cancer has returned.
However, a significant rise in your PSA level or a continuous rise over repeat PSA tests may be a sign that your cancer has returned and you may need further treatment. If your PSA level does start to rise, talk to your doctor or nurse about what treatment might be suitable for you."

Quote from www.cancer.org: "There is also a phenomenon called a PSA bounce that sometimes happens after brachytherapy. The PSA rises slightly for a short time within the first couple of years after treatment, but then goes back down. Doctors aren’t sure why this happens, but it doesn’t seem to affect a man’s prognosis."

Since these two quotes seem to reflect what all say, I am going to assume that the trainee doctor either needs to read up a bit more or learn how to present facts a bit better!!

It does prove though that it is best if there are two of you to listen because if John had gone by himself, and I hadn't been there to hear the bloke say what he did, then I would have assumed John either misheard or misunderstood what was said.

The sun is shining, we are busy packing - well I will be once my lunch break is over.  Things can only get better, even in the rain. 

PS If we can't trust him to get the Bounce right then in all probability he is also wrong about it not being a "cure" so we shall ignore that too!!

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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Posted 03 June 2015 17:26:18(UTC)

Johsan, you already know my opinion of that doctor - clearly barking. Brachy would not be offered as a curative treatment if it was only a holding technique. Just to cheer you up before your trip, the research indicates that the bigger the bounce (in a scale of 0.1 - 0.5) between 18-24 months post brachy the better the overall outcome for that man. They have no idea why, though.

Have a great trip x

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


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User
Posted 03 June 2015 20:19:11(UTC)

Thanks Lyn. Been busy scrubbing the house today. I'm a lazy housewife and really only put myself out to do a deep clean when I'm not going to be here!! I always need a holiday afterwards.

I keep my greenhouse tidier because it's MINE and the other half can't untidy it.

I don't think it was so much that he was barking mad just inexperienced. He'll grow up at some point. Lovely young lad but......

We can't control the winds - but we can adjust our sails
User
Posted 30 September 2015 17:27:56(UTC)
D-DAY PLUS 1 year and 4 months
Continuing my journal of experience. It is a few months since my last update but things change slowly now.
My general health remains good. I have now had PSA value of 0.7 twice running. Peeing is reasonable (2-3 on my scale 0-4).

Over the last eight months I have reported bowl movements as of slight concern. At first because of the problem of sudden urgency. What I pass also has mucus. More recently I have suffered bloating and very badly formed faeces. Saw my consultant and he said it is nothing to do with the brachytherapy and that it was probably IBS. I doubt that explanation for three reasons: (1) The onset has at least a circumstantial connection to the therapy (2) There are research papers that talk of bowl problems arising for some patients 1-2 years into the therapy. This is said to be due to damage to the bowl due to its closeness to the seeds but should not be a problem in the long run. (3) My GP does not think that IBS is a usual diagnosis in a 65 year old. So I will have some tests done.

I discussed the PSA value with the consultant. He is satisfied that the 0.7 is a good value. When I asked how smal should it become I expected an answer, based on recollection of previous information received, that it should become negligible. But actually this I was told is wrong. It simply must reach a low value (0.7 is apparently low enough) and stay there. Aparenly brachytherapy does not destroy all of the gland and so there will be some residue of prostate cells that have regenerated. So it seems to me now that one simply obtains new values for PSA from time to time and hopes that it does not rise persistently over the years. I had thought that after two years or so the result could be more definite. But at least the success rates are on my side so whilst I might be a bit frustrated I am not worrying.

I will ge yet another PSA soon and will report progress.
User
Posted 30 September 2015 19:35:41(UTC)
Hello, it is good to see your update as I think it helps others looking into brachytherapy. My other half is 9 months on from his. He has had bowel problems for years, hence the trip to GP when the prostate cancer was found as they did a psa test too. Since brachytherapy he has passed a lot of mucous and says when he needs to go, he needs to go quick! He usually goes 2 or 3 times each day at least. The consultant said the mucous is due to irritation, like your nose does the same when you have a cold. He said it should pass with time. His psa was 0.78 in May and 0.76 end Sept. So similar to yours. All the best.
User
Posted 01 October 2015 10:23:39(UTC)

Morning Kennt,

Glad you've updated as I was wondering about you.

This PSA "bounce" business is a nuisance but at least if there is a reasonable explanation (still have margins of of prostate unaffected by the seeds in our case) we can understand it.

John's has gone down slightly from the previous PSA and is now 0.5ug which, like you, we are assured is fine. If it stays in that area we can live with that.
At least it is down from before when we saw the trainee who told us it will rise and continue to rise!!

Our GP has very kindly agreed to check the PSA at 3 month intervals to keep "the wife from fretting" so I'm happy with that.
John is more laid back and would have waited for the 6 month ones.

As for bowels, I would definitely not take any notice of "It's just IBS" if this is something you have not suffered from in the past.

Yes I can appreciate that the seeds in the area they were implanted can cause irritation and therefore some mucus, but because of the prior warnings we received regarding bowel cancer a possibility at some stage in the future, I will be quietly taking note if John says anything about mucus etc. 

Any change in bowel movements should be taken seriously,especially if it is recent. I's too easy for  consultants to dismiss the symptoms, just because they mimic something else.

John's very private as far as his nether regions are concerned so I have to be clever and ask at the right time.
I just did and he has no problems or anything unusual at present.

Not that that's saying much, it might have started happening several months ago and now be normal for him and he won't have thought to mention it to me earlier!! He has had bowel problems for many years anyway so he just accepts what happens to them !!

He does still have urgency though.

John doesn't take the Tamsulosin any more, in fact his current problems are urgency so to his thinking Tamsulosin will only make that worse.

I think his next appointment is November so I shall make sure he mentions it.

He is packing the Tamsulosin though without any prompting. We go away for two weeks tomorrow and he's obviously thinking ahead, that's unusual in itself!

Good to hear from you and that, in general, all is well.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
 
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