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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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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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.
Edited by member 02 Oct 2014 at 22:48
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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.
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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
Thanked 1 time
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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..
Edited by member 08 Dec 2014 at 11:19
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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.
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PSA is moving in the right direction. Hope the peeing improves.
Paul
Stay Calm And Carry On. |
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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
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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.
Edited by member 07 Feb 2015 at 09:37
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~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 |
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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.
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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.
Edited by member 07 Feb 2015 at 20:06
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We can't control the winds - but we can adjust our sails |
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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.
Edited by member 08 Feb 2015 at 07:51
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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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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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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.
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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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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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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.
Edited by member 02 Jun 2015 at 06:14
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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
Edited by member 02 Jun 2015 at 12:50
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We can't control the winds - but we can adjust our sails |