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My journey with permanent seed brachytherapy

User
Posted 01 October 2015 18:19:59(UTC)

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.

Thanked 1 time
User
Posted 02 October 2015 20:29:36(UTC)

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

 

Thanked 2 times
User
Posted 15 October 2015 20:46:02(UTC)

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.

Thanked 1 time
User
Posted 16 October 2015 07:36:40(UTC)
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 October 2015 01:09:13(UTC)
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
Thanked 1 time
User
Posted 26 October 2015 09:15:03(UTC)

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 October 2015 13:49:16(UTC)
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 October 2015 16:42:49(UTC)

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 October 2015 16:56:19(UTC)
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!
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.

Thanked 3 times
User
Posted 22 December 2015 00:08:40(UTC)

Can't believe it is 18 months already!

Happy 2016 to you

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


User
Posted 22 December 2015 07:41:30(UTC)

Good to hear from you Kennt and with relatively encouraging news.

If intimacy is still important to you both then I would recommend the medication route. Perhaps, like John, you'll find that you can start with a low dose. We started with 25mg since there was some life available in that area!

Although that dose didn't last and we have actually had to increase it we still haven't reached full medication of 100mg.

Best Wishes for a very Happy Christmas to you and yours

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 January 2016 16:48:14(UTC)

Hello Kennt and friends
I joined the forum today because my husband has had radiotherapy and Brachytherapy.The PCa journey began a lifetime ago in Feb 14 when his GP suggested a blood test after reporting ED problems. He had a PSA of 13. Aftertwo biopsies and MRI scans (PROMIS Trial) he was found to have two tumours and Gleason Score of 7 (4+3).We began many months of research, indecision and visits to various consultants - most suggested he had RP but he was not happy about the small risk of incontinence (not the ED!.
HIs PSA rose to 25 so he finally had to act and opted for Radiotherapy and low dose Brachytherapy.
However in the end he had High Dose Brachytherapy -with 70 seeds implanted in Sept 15. (It was only when the paperwork was read after the operation that we found out he had the High Dose).
His experience with urine flow, urgency and frequent night visits to the loo has been similar to others on this forum - minor irritations to having serious PCa. MRI scans have shown that it has not spread outside the Prostate.
But he (and I) is very shocked to find himself so exhausted. He just can't do much at all. We just went on holiday for a week to the sun to see if that would perk him up, but he found it very hard to get the energy to do much. He is not the sort to enjoy relaxation!
He is experimenting with the Tamsulosin - trying to reduce the dose to every other day. He wonders if the tiredness is the side effects of that drug, or is it the Brachytherapy? Has anyone else had this really debilitating exhaustion? And does it last long? Any tips as to how I can help him? I am trying to get him to cut his alcohol and nicotine intake down. But he isn't in the mood for nannying! A recent blood test revealed his red cell count is very low - that indicates anaemia I believe? I think he feels that life is closing down in every way. He is a very different person to pre Feb 14.
This forum appears to be wonderfully supportive and helpful. Thank you for reading this.
North London Wife

NorthLondonWife
User
Posted 06 January 2016 16:51:25(UTC)

I forgot to add that his latest PSA is down to 0.8.

NorthLondonWife
User
Posted 06 January 2016 20:17:03(UTC)

Hi, is he on hormones as well?

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


User
Posted 10 January 2016 21:38:06(UTC)

sorry to be slow in replying!
He was on hormones to shrink the prostate, but he stopped taking them about four months ago.

NorthLondonWife
User
Posted 11 January 2016 09:33:18(UTC)

Hello North London Wife and welcome to the site.

My husband (now 75) also had the seed Brachytherapy. I'm not sure whether you' re getting both kinds of Brachytherapy mixed up (terminology wise that is)

Seed Brachytherapy is low dose (my husband had 58 seeds). These stay in permanently and eventually cease to give off any more radiation but will hopefully have done their job by then.

High dose Brachytherapy is like the following, taken from this site's information:

"Temporary brachytherapy, also known as high dose-rate (HDR) brachytherapy, involves inserting a source of high dose-rate radiation into the prostate gland for a few minutes at a time to destroy cancer cells. It is not available at every treatment centre in the UK.

You may be suitable for this treatment if your cancer is thought to be contained within the prostate gland (localised prostate cancer) and is 'medium risk'. Your cancer may be described as medium risk if:

your PSA level is between 10 and 20 ng/ml, or
your Gleason score is 7, or
the stage of your cancer is T2b or T2c.
Some men whose prostate cancer is beginning to spread to the area just outside the prostate (locally advanced prostate cancer), or with higher Gleason scores, may be able to have temporary brachytherapy. Check with your doctor or nurse.

You may have this treatment on its own or you may have it together with external beam radiotherapy and/or hormone therapy.

There is another type of brachytherapy called permanent seed or low dose rate brachytherapy that involves implanting tiny radioactive seeds into the prostate.

If your husband had seeds then it was low dose, still as effective though.

As far as I know, the length of time on HT is around the length of time it takes for the body to recover, at least I hope I got that right. I'm sure somebody will correct me if not.

As far as tiredness goes, it could just be an accumulation of everything getting him down. Everyone is different and no two men will necessarily react to the same treatment in the same way or in the same timescale.

He has to be patient. Has he contacted his specialist nurse to ask for advice - come to that you could ring the nurses on here and ask advice.

You'll also need a lot of patience and understanding but it's where us wives come into our own eh?

This particular conversation was started by Kennt about his journey. There is nothing to stop you posting on it but you may get more help and advice if you start a conversation of your own. Entirely your choice, just thought I'd make the comment which I hope you find useful.

You're here now and listening is what we are good at so ask away

We can't control the winds - but we can adjust our sails
User
Posted 12 April 2016 13:56:25(UTC)

D-Day plus 1 year 10 months - Signed off by consultant
Today I went to see my cnsultant - saw registrar instead. My latest PSA is 0.49. I drew a graph values and it seems to be shaping up to flatten off at about 0.4. The registrar said this is good. I asked by what criteria and was told something like: that it is flattening off on a value much less than the peak just after the brachytherapy (which was 13.6). I was told from now on the hospital will only be interested if the value begins to rise in a sustained way. In the meantime I will get my practice to take PSA values every 4 months for the foreseeable future. I must expect some temporary highs and lows in these values. Specifying any particular number as a trigger is pointless. What seems to matter is the possibility of a sustained pattern of increase.

My conclusion is that the hospital deems the treatment complete and we all wait and see what happens from now on. It is an uncertain position compared with the equivalent post prostatectomy situation but statistically based on my starting point (stage T1,N0,MO; Gleason 3+3; diagnosed at PSA 4.8 and digital inspection) I must (and do) trust that I have an excellent outlook.

Compared with prostatectomy my registrar pointed out there a likely to be fewer side effects. This is a marginal argument. I now expect to permanently depend on Tamusolosin to ensure adequate urine flow and my bowel movements are not brilliant. The bowel movements will probably improve in time. The promised minimising of ED seems to haven delivered. All said and done the brachytherapy seems to have served me well. I would make the same decision over again but in retrospect I feel that on my journey some NHS staff have seemed inclined to give the simplified rasuring answer to questions and on occasion I have not listened critically enough.

My quality of life is good - let's hope it stays that way.

I will probably not add more new updates to this conversation. It has served its purpose of giving me a way of recording my experience. It has been good that others (JohSan especially) have added their parallel experiences. I hope the record is helpful to anyone who is trying to decide on their course of action. I will probably write a summary based on this conversation and add it to my profile. Best wishes to all.

By the way I estimate that the permanent seeds have passed ten half lives and are thus down are now down to one 4096th of their original radioactivity level - I.e. 0.024%.

Thanked 1 time
User
Posted 13 April 2016 12:59:15(UTC)

Hi Kennt

Great to read such a positive post from you, and that the treatment has done it's job. I have read your posts with interest since I was first diagnosed and still considering my options and I found them very helpful. You gave a very honest account of how you were affected by the Brachytherapy and I measured my progress against yours at the same stages. I thank you for that and wish you all the very best for the future. Hopefully you will post again, maybe in 12 months or so, to let us know how you are progressing.

Take care of yourself,

Alan

User
Posted 16 December 2016 11:16:28(UTC)

Hi Kennt

I have just followed your journey and others with great interest and hope with my Brachytherapy treatment started in September 2016 and giving me an idea of what to expect from month to month as the pills take their course.

I had a Gleason score of 3+4 =7 and PSA of 2.1 and have taken the Iodine-125 seed brachytherapy route.

 

Regards John. 

User
Posted 14 January 2017 18:31:24(UTC)

Originally Posted by: Online Community Member

D-Day plus 1 year 10 months - Signed off by consultant
Today I went to see my cnsultant - saw registrar instead. My latest PSA is 0.49. I drew a graph values and it seems to be shaping up to flatten off at about 0.4. The registrar said this is good. I asked by what criteria and was told something like: that it is flattening off on a value much less than the peak just after the brachytherapy (which was 13.6). I was told from now on the hospital will only be interested if the value begins to rise in a sustained way. In the meantime I will get my practice to take PSA values every 4 months for the foreseeable future. I must expect some temporary highs and lows in these values. Specifying any particular number as a trigger is pointless. What seems to matter is the possibility of a sustained pattern of increase.

My conclusion is that the hospital deems the treatment complete and we all wait and see what happens from now on. It is an uncertain position compared with the equivalent post prostatectomy situation but statistically based on my starting point (stage T1,N0,MO; Gleason 3+3; diagnosed at PSA 4.8 and digital inspection) I must (and do) trust that I have an excellent outlook.

Compared with prostatectomy my registrar pointed out there a likely to be fewer side effects. This is a marginal argument. I now expect to permanently depend on Tamusolosin to ensure adequate urine flow and my bowel movements are not brilliant. The bowel movements will probably improve in time. The promised minimising of ED seems to haven delivered. All said and done the brachytherapy seems to have served me well. I would make the same decision over again but in retrospect I feel that on my journey some NHS staff have seemed inclined to give the simplified rasuring answer to questions and on occasion I have not listened critically enough.

My quality of life is good - let's hope it stays that way.

I will probably not add more new updates to this conversation. It has served its purpose of giving me a way of recording my experience. It has been good that others (JohSan especially) have added their parallel experiences. I hope the record is helpful to anyone who is trying to decide on their course of action. I will probably write a summary based on this conversation and add it to my profile. Best wishes to all.

By the way I estimate that the permanent seeds have passed ten half lives and are thus down are now down to one 4096th of their original radioactivity level - I.e. 0.024%.

Excellent news Kennt, I have just about reached my first "birthday". My PSA when I was first diagnosed was

July 2012   10.7,

I took Promegreat capsules for three years and my PSA dropped to

Nov 2012    8.81

June 2013   7.6

June 2015   8.6

Nov 2015 I had my seed implant

Feb 2016     3.1

Jun 2016     1.43

Nov 2016     0.99

I am due back at The Christie soon

Tony 

Thanked 2 times
User
Posted 15 January 2017 09:34:20(UTC)

Tony, as Kennt said in his April update my husband's journey parallelled his so if you click on my profile you can see where we are.
John has three monthly PSA kindly supplied by our GP and so far his hospital appointments are yearly but we do expect the one in May to be the last hospital one

We can't control the winds - but we can adjust our sails
User
Posted 19 January 2017 17:32:47(UTC)

Hi, I am new to this forum. My story is a sort of amalgam of several posts here. First of all let me say I have found reading this particular blog immensely useful and reassuring that my situation is not unique.

My story:

Back in 2010 my PSA levels were high: 4.6 or 4.8 if I remember. Note: my father had prostate cancer so I am fairly conscious of it. Consultant recommended a biopsy (TRUS - samples taken through the rectum under local anaesthetic). Result negative. Breath sigh of relief move on.

Late 2015: PSA level rose sharply (13) then subsided (4.5). Consultant recommended MRI scan which showed a small area of concern (non-conclusive). Advised more frequent monitoring.

Early 2016: PSA rose again (I think to around 12) so had a Transperineal Template Biopsy under general anaesthetic (through the perineum - area between scrotum and anus). Overnight stay - all seemed fine when I returned home. Bit sore but not too bad. two days later (saturday morning) woke up with full bladder but couldn't pee ("retention"). Wife drove me to hospital where I felt I was about to burst while waiting for my consultant but duty doctor took pity on me an inserted a catheter; I never thought I would be so grateful for someone sticking a tube up my penis! Sheer bliss to be able to pee. Had the catheter (tap controlled rather than bag) for about a 10 days after which I was OK. Meanwhile, I had almost forgotten about the biopsy result but then it came in: one sample showed very small amount of cancerous cells - therefore localised but with a high Gleason score 4+4 = 8). So localised and with early detection but potentially aggressive cancer.

My consultant passed me on to two specialist consultants - one specialising in radical prostatectomy (RP) and one permanent seed brachytherapy (PSB). Potential issue with PSB would be that since I had gone into retention after the biopsy then likelihood was that I would have major issues if PSB was attempted with my prostate as it was. Problem was my prostate was enlarged so PSB would require a 3-4 month wait during which I would need hormone therapy to reduce the size of the prostate (otherwise they cannot inject the seeds effectively) and also I would need a TURP (if you need a TURP then look it up online AFTER the operation - basically they use a heated wire loop passed up through the penis and through the urethra wall to scrape away part of the prostate) to avoid the retention problem after the PSB. So basically at this time I was way way inclined to go for RP - lets just get it over with straight away. A friend's husband had had RP and she was very positive about it. Saw both consultants and was about to decide for RP when I went to a third consultant - a Urologist who would do the TURP if I went down the PSB route. I only really went to see him as a courtesy as I had pretty well decided for RP. The consultation with him really changed my mind. Although the PSB route would be more drawn out the risks of longer term complications such as incontinence were less with PSB than with RP. Also checked with my friend and she admitted it had been hard for her husband after the RP with pretty well three months of incontinence and occasional problems even a year afterwards (a scenario similar to another friend of mine that I hadn't seen for many many years until recently and whom I discovered had had RP a couple of years ago). So, PSB seemed potentially back in play - especially as my lifestyle involves a lot of physical activity - especially running. So, having thought my way through this had a discussion with my original urologist (who had discovered the cancer) to see if my logic for now preferring PSB was reasonable. He confirmed this so I opted for PSB.

Because of the fact that I would have to wait a few months for the PSB I was put on Zoladex implants (stops body producing testosterone) to stop the cancer from developing. Also on Avodart to reduce the size of the prostate. This combination gives you all the symptoms of the menopause - especially hot flushes - and kills your libido. Still, my GP said it would give me more empathy with women; actually most of my female friends just said, in effect, "ha, now you know what we have to put up with". So, in June had the TURP operation - general anaesthetic / overnight stay and released as soon as I could empty my bladder - amazing how you get used to having a bladder scan after every pee. The immediate effect of the TURP was that frequency and urgency of peeing was a problem for 3-4 weeks and then it settled down (I read one blog where the writer described wearing a groove in the carpet from his frequent dashing to the loo). However, by the end of the 4 weeks or so I could pee better than for years!

Slight detour: precautionary bone scan (to check for spread of cancer) showed an anomaly in one arm which initiated a regular x-ray then an MRI and then a full PET/CT scan over the course of a month - one of my friends unkindly suggested I must have a thing for radiology nurses! Anyway it was all clear so put down to an unknown but most likely inconsequential anomaly.

Finally in late October went in for Brachytherapy. As mentioned in other posts: slightly bizarre having a nurse scan your urine with a Geiger counter. Immediate effects of operation were less severe than the biopsy or the TURP had been and about 3 weeks after operation was feeling very positive and was back running. Then at about week 4 or 5 started to feel the effects, presumably, of the radiation from the seeds. Felt I was going backwards in terms of frequency and urgency of peeing; had the experience many others reported of unexpected bowel movements when peeing (at moment I always pee sitting on the toilet as I don't trust that I can control my bowels). Have been on Tamsulosin since the operation - not sure when I will be allowed to stop these. I have some days when water works are fine and others where I have difficulty emptying the bladder and end up peeing several times in a short time. If I have a day of travelling / meetings then I tend to take a couple of Ibruprofen in the morning and at lunch time - this definitely helps presumably by reducing swelling of the prostate but I try to do this only one day or so a week as I know you shouldn't take Ibruprofen long term.

I cannot isolate the side effects to determine which are Brachytherapy related and which are related to the drugs (Zoladex should be wearing off about now so in next couple of months may have a better idea) but generally they are:

Unpredictable tiredness - some days can go to the gym and go out socialising with no problems while on other days a single activity leaves me tired.

Much better now but in the middle period of Zoladex and Avodart treatment I had real problems concentrating for any period of time - and for me this was probably the most distressing of the side effects.

Had no loss of my main hair, but my body hair has largely disappeared.

I have had very dry skin - especially on my hands - to the extent my iphone doesn't recognise my fingerprint!

Peeing is gradually getting better and now, 3 months after brachytherapy, varies between needing to get up only once during the night to sometimes needing to get up twice and occasionally sleeping right through. I have become very conscious of not drinking any fluids if I am about to undertake a train or car journey or attend the theatre or similar. So I have found I have breakfast early and take on fluids then so that by the main part of the day I can manage without too many problems. I do find as I enter any public building I am scanning for the toilets so I now the fastest route to them if needed and even if I don't feel the need to pee I will take advantage of convenient loos to go anyway.

The big effect of the drug treatments has been loss of libido - erections are helped by Viagra but the sex drive is very, very diminished. My consultant insists on the viagra to maintain the erection capability during this period - to keep the system working so to speak. I think I shocked my GP when I summed up my consultant's advice as along the lines of "I gather erections are compulsory but the sex is optional". Hopefully as my body gets back to normal this will all revert to normal. I do have friends who have not been able to go down the RP or PSB route and are on permanent hormone treatment with the consequent effects on libido - I think I would find that challenging.

Sorry this has been a long post but the biggest thing I have found through all this is that generally speaking men don't talk enough about prostate cancer and its treatment. I have been shocked by how many men I know that have had cancer and treatment but don't / won't talk about it.

Thanked 2 times
User
Posted 19 January 2017 20:27:58(UTC)

Hi derek
I think most of the stories on here are indeed an amalgam, I had PSB in Nov 2015, I had 88 seeds implanted at The Christie, I had slight pain for a few days ( I think it was due to the "invasive " nature of the treatment.) I was prescribed Tamsulosin and was told that I may have to take them indefinitely. Prior to the implant my PSA had fluctuated been between 10.4 and 8. I returned to Manchester in February 2016 and my PSA had dropped to 3.4, 1.34 and 3 months ago 0.9.
I have no experience of Zoladex or Avodart so cannot comment on the side effects. PSB is a low dose radiation therapy so there should be no noticeable effects, my nocturnal toilet break were initially once or twice a night but now it's once or twice a week.
I recently spoke to my Clinical Nurse Specialist, I was describing my urinary situation, my description was that ten years ago I had a "pumped" system whereas now it is a "gravity fed" system, I consider that this is a small price to pay! LOL.
I too have experienced a loss of libido, but I have a beautiful nine year old granddaughter and am looking forward to seeing her at University, something I would not have expected to achieve without Prostate Cancer treatment.

User
Posted 20 January 2017 08:46:05(UTC)

Morning Derek,
Glad the PSB is working for you. As I've already said to Tony click on our profile for an up to date (ish) report our progress,

I don't know if you have already done it, but it might be a good idea to copy and paste your post in your profile so that others have access to it in the future.

This thread is Kennt's but he is unlikely to be updating in the future so your post might get lost.

Similarly, it might be best to copy and paste your post and re-post it as your own so that more people will pick it up.

Hope all continues to go well for you

We can't control the winds - but we can adjust our sails
User
Posted 27 January 2017 16:20:06(UTC)

Hello all. D-Day plus 2years 7 (ish) months.
It is a long time since my last post and it is nice to see an accumulation of other peoples' narratives. Maybe all our accounts will help people who follow and need to make their own choices.

My latest PSA is 0.23. I had thought that the value would flatten punt at about 0.4 (see earlier posts) so this must be good. I have asked for an idea of what I should expect and the answer is evaded. It seems that I must simply hope that the value does not rise significantly for two consecutive readings. It seems that it is anyone's guess what is 'significant' but I suppose it is a figure above 3 or 4. I knew at the outset that it takes time to know the outcome (after the PSA bounce etc) but I am dissapointed that the vagueness at this end of proceedings was not made clear to me at the outset (maybe I just did not notice the caveats). Anyway I am very happy with the 0.23 value and long may it last.

Most of the side effects I described earlier in my journey continue but lessened. I still need to take tamusolosin. I speak to my brachytherapy nurse once every six months and I am sure it will soon reduce to once a year or less. From now on an occasional PSA test is all that I am asked to do - I think contact is maintained with the nurse mainly to collect statistics.

I am now semi-retired and continue a full life - hampered only by a lack of general fitness which I will improve on.

Best wishes to all and I look forward to your updates.
An updat from Jonsan would be good as we began at about the same time.

User
Posted 27 January 2017 17:13:08(UTC)

Hi Kennt,
It sounds like you are winning with your Brachytherapy journey and i wish you all the best of luck in the future,but i am still at the beginning of mine and was hoping for my first PSA test result on the 31st of Jan but they have just canceled it so i am hoping the Brachytherapy nurse might give me the result on Monday as I don't need a specialist to read the numbers out.
Keep the the updates coming as it has helped me and others get an idea of the brachytherapy side of the treatment.

Regards John.

User
Posted 27 January 2017 18:46:15(UTC)

Hello again Kennt, lovely to hear from you and glad that you are doing so well.

Our Brachytherapy nurses disappeared PDQ never to be heard of again !!

John's last PSA in October was 0.2 the same as the previous reading.

All is well with him. He hasn't taken Tamsulosin for many months although he does carry a couple around with him and doesn't seem to be having any trouble in that department.

Personal life is as before, although we do now have to rely on Sildenafil for a good result but that's a small price to pay.

It gets him down sometimes that he has to rely on a medicinal aid but I am always telling him that at his time of life he probably would have needed to in any case so what's the big deal.

In fact with no cancer he would have put it down to ageing and that side of life would have ceased altogether, so we should be thankful for what we have I say. 

Look forward to your next update

 

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 31 July 2017 17:12:51(UTC)

I just wanted to post here because I had Brachytherapy Jan 31, 2017.  It has been 6 months now and I am having a very similar experience as Kennt.  

There is confusion "down there".   Urination is uncomfortable as it burns at both ends.   Deep inside my rectum is a pinching and burning sensation as I relax to urinate.  I have to be greatly in tune with everything as I feel that sometimes I might "soil my armour" (in my best Monty Python voice).   Anything in the rectum causes urination symptoms.   Even just gas.

I am on Flowmax and 2 bladder spam medicines.   I urinate frequently during the night.  I found that if I lounge around the house in a recliner or I am lying on a bed, I have hard urges to urinate more often and almost imediately upon standing.  I also have an odd sensation every 10 minutes or so where I feel like I may have leaked, but nothing is there.  This only happens while lying down.  At work, being seated is much better and I can go longer periods between visits to the restroom and I don't get that odd sensation.

I am getting a little down emotionally as I was hoping these symptoms, while expected, would only be a few months.  As I said, it has been 6 months and not much improvment since the problems started a few weeks after treatment.  

I get my first PSA in a couple of weeks.   I haven't thought about much, but it is starting to cause me a little uneasyness.

Anyway, I just wanted to post to so others will know that there is another out here who has the same side effects as Kennt.  I will try to post as things change (hopefully for the better).

 

 

 

User
Posted 01 August 2017 15:54:12(UTC)

Hi MG3,

I had my Brachytherapy in September 2016 and was lucky not to have to many problems apart from getting up three to four times a night that seemed to to give me fatigue and tiredness for a few months and was also taking Tamulousan up to April this year when i decided to come off of it but still keep some in reserve.

I think the operation effects us all in different ways and i hope you improve over the next few months.

 

John.

User
Posted 04 August 2017 16:11:30(UTC)

Hello MG3.

As you will have seen from the replies my John had his Brachytherapy about the same time as Kennt and as Johntheprint says, we are all different.

There are a couple of others on here who have had similar problems to you so you are not alone. I see that you are in the States.

When you have a procedure there such ad LDR do you get given a contact number for when you have a problem. I also see your PSA was pretty low. Just out of curiosity could I be nosy and ask what your Gleason score was?

IT is possible that you have an infection and you really need that ruled out as it's possible you need antibiotics

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