My journey with permanent seed brachytherapy - - Page 3Personal stories

My journey with permanent seed brachytherapy - Treatment,Brachytherapy,Experience

User

Posted 02 Jun 2015 at 21:05

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

User

Posted 02 Jun 2015 at 22:39

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

User

Posted 03 Jun 2015 at 08:03

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 Jun 2015 at 11:51

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

User

Posted 03 Jun 2015 at 12:43

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

Edited by member 03 Jun 2015 at 12:52 | Reason: Not specified

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

User

Posted 03 Jun 2015 at 17:26

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

Edited by member 04 Jun 2015 at 00:04 | Reason: Not specified

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

User

Posted 03 Jun 2015 at 20:19

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......

Edited by member 03 Jun 2015 at 20:19 | Reason: Not specified

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

User

Posted 30 Sep 2015 at 17:27

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 Sep 2015 at 19:35

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 Oct 2015 at 10:23

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

Edited by member 01 Oct 2015 at 10:26 | Reason: Not specified

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

User

Posted 01 Oct 2015 at 18:19

D-Day plus 1 year and 4 months supplement:
Hi Johsan and sjtb: Good to hear your experience reports. As Sjtb says, let us hope this saga is of use to those contemplating brachytherapy. Anyway one way and another we are all progressing plausibly well.
I forgot to mention, in my above note, that I am still taking Tamusolosin. I have tried twice to stop but after about four days have resumed. My consultant feels that if I have not given it up by now I will be taking it forever; however all along I have been told that after two years (thereabouts) I may be able to get a urologist to perform a minor procedure. The basis of this is that the radiation will leave scar tissue that can form a restrictive ligature. This can often be overcome by a procedure to stretch the urethra. One way or another I intend in due course to come off Tamusolosin.

User

Posted 02 Oct 2015 at 20:29

Great to see you posting another update, as sjtb says it helps us fellow Brachytherapy group to measure how we are progressing and may help newcomers decide on their course of treatment. It would appear that there are only sjtb's hubby, Sandra's hubby, yourself, me & Devonlad on here that opted for Brachy so not much is posted on the subject. Good to hear you are doing well, and more importantly feeling well, and that the PSA seems to have levelled out. It is a worrying time waiting for those results. I just had mine after my implants in January and it was 1.01, so going in the right direction at least. Thankfully I have not had much trouble in the bowel dept, although I did, and still do, suffer with IBS before the treatment so no real change there. Obviously this may change as time goes on. I am checked regularly for bowel cancer because of my family history, my Mum died 4 years ago of bowel cancer, as did her sister before her and my cousin the same. I am taking one Tamsulosin a day and hope to come of tat eventually, although there is no rush. Flow rate has been quite good and the sudden urgency seems to have calmed down. I sometimes still have to go to the loo once or twice a night, which I never did before treatment, but I have been assured that this should ease with time. Saying that, last night I didn't get up at all so you never know.

Interesting to read Sandra's comment that John thinks Tamsulosin will make the urgency worse. I was told the opposite by the oncology nurse, so makes you wonder who is correct.

Anyway, nice to know we are all progressing,good luck to us all. Please keep the updates coming, they really help.

All the very best

Alan

User

Posted 15 Oct 2015 at 20:46

D-Day Plus 1year 4.5 months. (A note on bowel issues)
Over the last seven months I have mentioned a growing concern over adverse effect on the bowel. Things like unexpected urgency, explosiveness, badly formed with much mucous. Because of the explosiveness that I have experienced (from time to time) my Brachy consultant suggested I had IBS. I began to pass blood. Mostly bright red. I went to see my GP. He was not inclined to accept IBS as being a cause of any of this. So he referred me for a colonoscopy which I had today.

The colonoscopy showed a reasonably healthy large intestine. There was a small plolypse immediately removed. But the real find was blood and inflamation on the part of the scan passing closest to the prostate. The physician performing the colonoscopy said such inflamation and sometimes bleeding is something he had seen before with other brachytherapy patients. He took some samples for biopsy but expects no surprises. He seemed confident that my problems of bleeding and urgency are a probable result of the radiation from the brachytherapy. I will be called back soon by the colonoscopy physician for the bleeding to be treated.

I have read some research digests that suggest bowel issues emerging 1 to 2 years after the procedure. I also recall reading other experiences reported in other social media groups as indicating bowel side-effects. It seems to me that my urgency and passing of blood are indeed side -effects of the brachytherapy. However I hasten to add many people seem not to suffer such experiences.

Edited by member 16 Oct 2015 at 06:29 | Reason: Not specified

User

Posted 16 Oct 2015 at 07:36

Hello, glad you have an answer. My other half had a lot of bowel problems before brachy, urgency, loose stools (he said he hasn't done a normal "poo" for about 5 years, he goes many times a day) in the process of trying to find the cause, they found the prostate cancer (although not related! The bowel problems were forgotten and the prostate cancer treated. It will be interesting to see what happens bowel wise after the brachy. He says there is lots of mucous. Also when he needs to go it's quite urgent. As he farms from home he is never far from the toilet.

We are expecting bowel problems may get worse. But only time will tell. Hope you get sorted.

User

Posted 26 Oct 2015 at 01:09

My husband had the seed

implants on August 27, 2015, about 8 weeks ago. He is only 56 yrs old and it was caught very early with a PSA of 4.2 and Gleason score of barely 6 . He had 72 seeds implanted and so far doing well . He had the fatigue and confusion the first two weeks and is still on the Flow Max. Was getting up about 3 times at night but that has already lessened as has the fatigue. Your post has certainly been informative . I read it all to him while he is trying to Watch the Dallas Cowboys football game on TV. ( you know how you guys love your wives) haha. We have not been told anything yet about the " Bounce" nor has it even been

mentioned. So Thank you for you article and

we will be checking in

Adrienne and Tommy

User

Posted 26 Oct 2015 at 09:15

Hello Adrienne and Tommy and welcome to our "club"

Like Kennt and sjtb my husband also had the seed implant (58 of them in his case) and although he had initial problems they seemed to have ironed out and although he occasionally gets some urgency (and it is just occasionally) he is pretty much back to normal.

As for the "bounce" we were warned of it at our first consultation so were aware of it. If you read my profile you can see that we did get some duff info from another, junior trainee consultant, but John's PSA has now dropped to 0.5.

We do have another appointment in November so fingers crossed it hasn't decided to shoot back up.

Kennt - glad you finally got the situation resolved, well almost. Hope the treatment for the bleeding is successful

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

User

Posted 26 Oct 2015 at 13:49

Thank you, we are in the time frame of waiting for the three month check up . He only had a smidgen of cancer in one of 18 " biopsy cores" . We were so thankful this was caught! The urologist, who is a surgeon, recommended complete prostate removal

because it was contained and he was so young . That seemed a little overkill to us, so we chose the brachytherapy, and so far have been satisfied with our choice . He has a little urgency and did have the soreness here and there . He went home same day after surgery and seemed groggy for about 2 weeks . The Dr said it was due to the anesthesia , but... after two weeks? After reading all of your accounts... maybe it was.. Like you mentioned , I was wondering how it was to be decided that the cancer was killed for good ..but I guess it is a lifetime of continuous PSA testing . Ugh We have to make sure he always has a job with insurance .

User

Posted 26 Oct 2015 at 16:42

Hello amerrell and welcome.

Surgeons often recommend surgery as a first option. Certainly ours did and was very very sniffy when we opted for Brachytherapy and even told us we had left it too late (Active surveillance for the first year) and that we should have taken that option when it was first offered to us.

My husband was home the SAME day, and we travelled by public transport for most of the journey home, although I did insist on a cab from the hospital to the first station. Men can be so stubborn sometimes!!

Groggy after two weeks wouldn't be unusual and neither would tiredness, both of which can be caused by the anaesthetic as well as the actual seeds implanted.

Job with insurance? At least you should be able to get holiday cover relatively easily eh!!

Good luck with the three month check.

Fingers crossed we all do well.

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

User

Posted 26 Oct 2015 at 16:56

holiday cover? we're in USA I we have to either pay for insurance or have our company plan. which we do .. but the field my husband is in ... a truck driver in the oilfield is iffy now and if you have a job with a company insurance plan , like we have .. you are lucky . just hope this job doesn't have lay offs like so many are . But this could be a whole different subject!

Edited by member 26 Oct 2015 at 16:58 | Reason: Not specified

User

Posted 21 Dec 2015 at 23:24

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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My journey with permanent seed brachytherapy - Treatment,Brachytherapy,Experience

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