I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Brachytherapy bowel/pelvic problems?

User
Posted 01 Feb 2021 at 15:31

I heard some stories about the recovery for this being worse after the initial 6 weeks.

Things like major bowel problems, and even pelvic problems down the line.

I think I may have to choose between this and radical prostate removal... help!

Is there anyone out there that can explain their own experiences?

 

 

User
Posted 01 Feb 2021 at 17:32

Are you talking about HDR (temporary) or LDR (seeds)? Also if you had either of these would it be accompanied by External Beam RT?

As it happens I had HDR and EBRT, I didn't notice any major problems. One major advantage of Brachy of either kind is that the source of radiation is in your prostate and the strength of radiation falls off rapidly with distance. Most of the dose is absorbed with in a few millimetres of the source, so very little gets to the bowels or hip bones. With External Beam RT, the radiation is fired through the body at the prostate so it will be absorbed by Bowels and Hips etc on the way in and also n the way out the other side. They move the beam around so that the bits other than the prostate don't get the full dose but they do get a fair bit, so side effects can be higher than Brachy.

Dave

User
Posted 01 Feb 2021 at 20:52

Thanks, Dave. I have not been for full consultation yet, all I know so far is that it is seeds. Also that they do some sort of ultra scan to check size and shape of prostate. Seems like better option than radical surgery.... all are scary though, especially when I feel really well, and fit but they tell me otherwise...

User
Posted 01 Feb 2021 at 20:56

Just wondering how you are now, Dave?

see you had it done 2018, so how are you compared to then?

User
Posted 01 Feb 2021 at 22:00

Though I had the radiation in 2018, I was on HT for another two years, and that takes a long time to wear off. So really I'm only a few months post treatment.

My psa is <0.1 but that will almost certainly rise now the HT has worn off. Erections are not very firm, orgasm are dry, but I do have fully functioning nerves which is good news. Bowels are very good, perhaps a little better than pre treatment (radiation apparently causes a bit more mucus to be produced, so no straining when I want to go to the toilet).

Remember my treatment was HDR yours will be LDR and though the principles are the same, you probably can't expect to make a direct comparison between our treatments. 

Radiation does not work by killing cancer cells (at least not straight away), it works by disrupting cell division. Cancer cells damaged by radiation will not divide properly, and effectively that kills them, it may be many months after the treatment that they die. Non cancer cells are able to withstand radiation better and also only divide every few years. Some of them will suffer the same fate on division as their cancerous cousins. So the side effects, if any, from the death of these cells will show up many years down the line. 

Given the choice between surgery and brachy I would choose brachy. The potential side effects of surgery I would not want. 

Dave

User
Posted 02 Feb 2021 at 11:37

Hi I had Brachytherapy  in September 2016 PSA 2.19 Gleason 3=4=7 ,I have had no problems with bowls or water works apart from getting up 3 to four times a night in the early years but can still get up twice a night but only to help getting back to sleep.

I think i have been very lucky my PSA is down to 0.08 and have been signed of by my specialist.

John.

User
Posted 02 Feb 2021 at 15:47

Thanks for your reply, John.

The psa thing baffles me. It seems like yours was really low to begin with, so I’m surprised you were referred for further checks. 
Two years ago (at 63) mine was about 4.6.  I had the ‘finger where the sun don’t shine’ and that checked out fine, so that was that. Then, November 2020, psa 5.2, finger thing still fine.... BUT, this time (at 65) I was referred for MRI. The reason was because brother (1 year older) had recently been diagnosed with PC. 
sure enough that’s me as well now, but I wouldn’t have been referred on the psa and other test for sure.
not sure where I go from here though...

I love running, and being fit but wonder if this PC and the treatments it brings will bugger me up now... that’s my biggest worry... any advice?

User
Posted 02 Feb 2021 at 16:51

Interesting whatsupdoc that you were not referred and they only went by a DRE, at 58 I had a psa level of 4.5 and I was referred to a urologist.   From that came and MRI and biopsy within 10 days.   I continued on AS which was the advice as although there was signs of cancer it was non agressive and very small.     5 years on and my PSA has hovered between 6-8 and I have just finished proton beam therapy and to be honest I feel fine although I have been told symptons will peak at 2 weeks.   I know that even just before my treatment when I was having a spaceOar fit the doctor said that my prostate felt fine with the finger test .    Scary thing I find is that I have never had a single syptom that could indicate something wrong which is why for so many of us this gets too far before it presents itself.

 

Good Luck

User
Posted 02 Feb 2021 at 17:00

Thanks for your reply, Dave, good to hear you are doing well! You have explained things very well, and I’m starting to work out all the abbreviations now! 3 weeks ago    the only thing I really knew about PC (which I only understood as being Personal Computer) was that Rod Stewart had it! It’s sinking in now.... and I guess I will have to try to become an expert as I’m expected to make the big decision... 

User
Posted 02 Feb 2021 at 17:02

Whatto Whatsupdoc,

I offer these words of encouragement to you. I offer the same encouraging words probably once every 6 weeks or so. I am 76.5 years old and have just returned home after a grueling 45 minutes Mountain Bike Ride. I am an aged Lance Armstrong without any mystery supplements. October 2010 I was 66 years of age being treated at Bart's Hospital receiving 63 radio active seeds into my Prostate. I played a full round of Golf within the week and have never looked back in fitness terms. I am intending to be helpful and not trumpeting myself when I tell you that you will be as fit as you are now after the treatment all things being well with the procedure and your recovery. Please take a look at my profile and conversations to see that this is regular advice I offer to people like your goodself. Apart from the 1st couple of weeks I have never suffered Nocturia and bed down for 8 to 9 hours every night.

I hope my story is useful and I wish you well.

 

Michael aka Chigwell2010.

User
Posted 02 Feb 2021 at 17:13

Yep, I’m with you, Audiman.... no symptoms at all, so gobsmacked with the Gleason 3+4 =7. What made you decide on the external beam radiation?

I change my mind almost every day with what to have... I’m just going around in circles... and having bad nightmares about being turned into a radioactive zombie!

Thanks again!

User
Posted 02 Feb 2021 at 17:20

Dear, dear Chigwell.... thank you so much for your words... so good to read that you really are flying! I will certainly read your stuff, you are the medicine I need! Thanks again, I really mean that, mate...

User
Posted 02 Feb 2021 at 23:16

I couldn't fault any of the professionals that I can in contact with and there was no pressure to go either route for treatment.  Like many I read lots of things and especially guys experiences on here but after an appointment with an oncologist which he spent almost an hour with me as I had a list a mile long of questions I just knew that Proton Beam was going to be the best way forward, it had same results as surgery and I have to saw that I have been in total amazement at the planning and preparation in delivering this treatment.  It was every other day for 7 days and so far apart from some discomfort passing water and the frequency I feel more than ok.   Time will only tell what side effects I will have and its too soon to know what will be happening in the bedroom dept.

User
Posted 03 Feb 2021 at 10:18
Hi Audiman,

There is no reference that I can see under your Bio that you had Proton Beam although there was on other treatments. Did you have Proton Beam treatment abroad or maybe at the Christie? I think I read that they had a necessary Cycletron in Wales now. Was your treatment within the NHS or private? It would be interesting to know more about your experience and of couse we all hope it works well for you. They have certainly got the number of fractions down but doubtless at higher dose.

Barry
User
Posted 03 Feb 2021 at 10:57

Hi Old Barry,    My Treatment actually finished only on monday.    I must update my bio but proton beam came into the conversation with the oncologist who first said that I was a perfect candidate for "Sterotactic Radiotherapy" and this would have been delivered in 7 bursts and no HT.   The issue became that they could not get me in to have the spaceOar fit as firstly they were limited by the amount the NHS would allow, they had a backlog and in December they were booked to early Feb and it was pointed out depending on covid there was no guarantee that  the appointment would not be pushed further back.

There is a cancer hospital called The Rutherfor in Northumberland and this is less than 1.5 hours drive for me.  The proton beam was not offered on the NHS and I decided to go private and within about 6 weeks I have had everything sorted.  The treatment itself was painless and I went every other day for 7 fractions (42.7 Gy, whatever that equates to I'm unsure) The prep is what takes the time, enema to clear lower bowel each visit, then 500ml of water to get my bladder to a specific amount for them, then they position you on the machine and take a CT scan to be sure that the postioning of everything inside is correct before starting the Proton Beam.    The only issue I have had is to have an urgency to pee and after treatment three I found I was going to the toilet a lot more but of course at the same time I have upped my water intake to 2L a day min.     The symptons are exactly as they epected and I would find on the day of the treatment I would be up 3 times during the night (the worst was 8).   So three days after the treatment and last night I slept right through undisturbed until 6.30 this morning.    I know I'm not 100% out of the woods so to speak as they have said it can take 2 weeks for side effects to peak but so far I have been pretty good and feel fine.

I did consider surgery and also considered HIFU but the clinic that I contacted were so slow at responding and I was chasing all of the time that I felt I had no confidence in them at all.    It was the oncologyst who just seemed to explain and describe everything in great detail without being too technical and when I left there I knew exactly what I wanted to do and it was just a huge relief to have decided the route I would take.    I know that I have spent a lot of money on this and at first I felt I couldn't justify it for me, if it had been my wife or children I would not have questioned it but they all told me how stupid that thought was and if it seemed to be the best in terms of as good as surgery with less side effects then why would't I do it.

I would also say this group has been great to read real experiences of what men are going through has helped put lots in perspective.    I couldn't recomend the Rutherford Hosipital enough they have been fantastic from the start to the finish and I will still be followed up by them with a phone calls and an MRI in 6 months to make sure the SpaceOar has discolved and everything is OK.   The other follow ups I'm told is to continue at the monent to see my GP for a PSA test, then I have phone appointments in March with the Urologist and also the Oncologist.

My son was also inspired to do the January Run for prostate cancer and raised over £4K.

Hope this helps

 

User
Posted 03 Feb 2021 at 12:21

Hi the main reason for my diagnosis was because i needed a private medical for the renewal of my 7.5 ton licence at 70 and the blood test picked up microscopic blood in my urine so my doctor asked for further tests and procedures with the result of 5 out of Twenty cores positive for cancer with Gleason 3+4=7 PSA 2.19, this was the best £140.00 pounds i ever spent.

If i had not had this blood test in 2016 my prostate cancer could have been a lot less treatable so we must tell all our male friends and family to get tested by the time they are 50 and not leave it till they have symptoms starting to show even if they have to go private.

John.

User
Posted 26 Mar 2021 at 06:52

Wow Chigwell that sounds so encouraging thank you

User
Posted 27 Mar 2021 at 11:49

Father passed from PC within 3 months aged 69, I tracked my psa with annual tests from age 60, seemed steady at about 2ng/ml, went up to 3.4 at age 63, went abroad for a year, dashed back due to pandemic, booked a psa test with GP for April 2020 that was cancelled due to lockdown, asked my GP to refer me for mp MRI scan, would not refer me, even for a private scan, I hunted hard and found 'doctaly', able to refer me without a GP referral, scanned in London by Vista Health within 2 weeks, and hey presto diagnosed with 6mm lesion in November 2020. Cost me the best £370 I ever spent. Back to GP - changed the doctor - sent for psa at last, 3.7ng. NICE guidelines changed around 2018 to refer if over 3.5ng. Referred for finger test, found nothing, and perhaps won't unless fingered the side where the lesion is located? Biopsy showed gleason 3+4=7. Hasn't spread outside the prostate, looked at all treatments and side effects etc. , opted for LDR Brachytherapy, granted as has not spread outside the prostate, due to have it soon in April 2021. Make sure the required urine flow test is done in the standing position gents.  Caught early enough I hope, but only because I kept a focus after a GP unintentional wobbly, and hunted for a private mp MRI scan, then urologist expressed surprise that my GP had not referred me to their in house scanner originally. Confused was I. But hey, push and 'own it' if we think we are in the risk zone, whatever that is - urologist said it wasn't necessarily genetically inherited, but my jury is still out on that one.  Kept my two sons in the picture. Thanks to all here sharing the post treatment experience, am still confident at the moment, the team looks experienced. Well, here goes...

Edited by member 27 Mar 2021 at 11:51  | Reason: Not specified

User
Posted 27 Mar 2021 at 12:43

Whatto Ascella,

 

A very interesting read and full marks to you for your perseverance. You may have already read my entry on this thread dated 2nd February 2021.  If I could be of any further assistance I would be very happy to oblige you.

 

Best of luck,

 

Chigwell2010.

User
Posted 27 Mar 2021 at 13:13

Well done Ascella. I do have a bit of sympathy with the GP, referring for an MRI without any evidence would be over cautious, but the psa test should have gone ahead or been rescheduled. We keep being told the NHS is open for business, yet your story proves it isn't.

Anyway thanks to your own efforts this will hopefully be a happy ending. 

Dave

User
Posted 06 Jun 2021 at 16:43

Following the earlier post on 27th March 2021, and with grateful thanks to Dave and Chigwell, an update on what happened. (One short omission of mine from the earlier post - I wasn't actually offered brachytherapy by the urologist. I had read online - maybe here -  that it was an option if the PC hadn't spread outside the prostate. I chose it over other options and was immediately referred).

I  had the procedure on 13th April 2021, 7 weeks ago at the time of writing, had a general anaesthetic, others may have a spinal aesthetic, I knew and felt nothing, came round and wheeled for one night in hospital, the most uncomfortable being the catheter overnight and being guided to drink much water. Discharged the next day with prescribed medication and zero pain from the procedure. Blood in the waterworks for a week or two as advised, but developed troubles for two to three weeks with waterworks every ten minutes day and night, homebound by necessity, and clearly not emptying, sleep much interrupted. Called the hospital to check - they asked if I'd taken the prescribed strong anti-inflammatory medication in addition to the mandated medication...I hadn't as I thought it was only for pain; not so (never ass-u-me), as it helps to reduce the swollen prostate, which inhibits waterworks. Started it, much better straight away, just stopping it now as much better. Had a CT scan after 6 weeks to check the seeds in place and a psa count, and now feel almost normal, except that erectile function is much reduced and with blood in the ejaculate still. But it was a fair trade off, and there are weeks to go yet, although I don't expect a full recovery. The NHS brachy department staff were just brilliant. 

So, in short, advise every man we know just to get checked, but be aware that psa count and physical examination are NOT reliable for diagnosis - and I signed up to the Bob Willis ( cricketer) foundation that draws attention to this. If you can get an multiparametric MRI scan anywhere, NHS or privately, this is the only way I was diagnosed early enough. I have already persuaded a friend aged 72 to do this to put his mind at rest. So let's all spread the word. This takes 11000 men a year, many have it now and have no idea they have an aggressive form it (even though it is common in older men along with an enlarged prostate). 

Keep sharing and caring!

User
Posted 06 Jun 2021 at 18:47

Really good news Ascella. I do think brachy is a good treatment, for those who are suitable. The side effects are not too severe, but it gets a lot of radiation to where it is needed. 

Dave

 
Forum Jump  
©2021 Prostate Cancer UK