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Hugh's Journey

User
Posted 06 Jan 2021 at 10:32

Hi everyone, i am new to this forum, having been diagnosed with localised prostate cancer on 30th November last year.  I have been through the standard set of steps: MRI scan, Biopsy, Bone Scan and have been offered two suitable treatments: Surgery or Brachytherapy.  I spent a lot of time over the Christmas break considering these two options and trying to make up my mind.  I am currently 68 years old with a grown-up family and I know that age can be a key factor in choosing a treatment.  Because I have found this forum, and the additional information I got from the health professionals, so comprehensive and informative, i have decided to share my journey in the hope that others may find it useful in the future.  


I have been initially surprised to discover how many people i know are aware of men who have been through this and I have been lucky enough to be able to speak directly with a number of guys who have had either surgery or brachytherapy.  I have also been shocked at how young some people are when they are diagnosed as I had always considered this to be an old person's disease - wrong!


I am just waiting to have another chat with the oncologist, but at the moment I am leaning towards Brachytherapy as my chosen treatment, on the basis that i hope it is less drastic than surgery and the side effects may be slightly reduced.  However, I also know it all depends on me and the circumstances.  I will update as i go.

User
Posted 06 Jan 2021 at 14:40
Sorry that you find yourself here, Hugh, but you've definitely come to the right place. There are people here who can share their experiences of most things. If you have any medical questions I'd strongly recommend ringing the PCUK nurses on the Freephone number at the top of the page. They are helpful and knowledgeable.

Best wishes,

Chris
User
Posted 06 Jan 2021 at 15:58

Hugh,


I started a support group last year for brachytherapy patients and those considering brachytherapy, and 36 people joined our first Zoom meeting in November. It was a great opportunity for those just near treatment to put questions to those well past treatment. Next meeting is 14th January. If you would like to join the group, send me an email: support4@rpcsg.org.uk


I'm guessing you're being offered LDR/seed brachytherapy?


It can be useful to include your diagnosis in your profile/bio (initial PSA, staging, and gleason), so people can more usefully comment geared to your particular diagnosis.


Wishing you all the best.

User
Posted 06 Jan 2021 at 16:56

Hi Andy, many thanks for your response. 


My diagnosis was: PSA of 10 and a PIRADS 5 MRI scan with a prostate volume of 23 cc. Biopsy showed Gleason 3+4 in 4 out of 5 cores from the right side of prostate occupying 70%, the Gleason 4 element was 15% of the total score. Left side was benign.  Maximum flow rate is 22 ml/sec with a post-void residual of 11 cc and an IPSS of 5/3.


Yes, I have chosen Brachy as the way forward and it is LDR/permanent seed.


I would be very keen to join in on the 14th, so I will email you as you suggest - thank you for the invite.

User
Posted 06 Jan 2021 at 16:58

Thanks Chris, for your response.  I'm definitely getting lots of info to help with my understanding.  It's good that so many people take the time to share their stories.

User
Posted 06 Jan 2021 at 17:01

Sorry, should have mentioned, my bone scan was clear, so cancer confined to prostate, thankfully.

User
Posted 07 Jan 2021 at 00:16

Hi Hugh,


Sorry you find yourself on this forum but it is a huge source of information and support, I was diagnosed with Prostate Cancer on 14th Feb 2020 and elected for Brachytherapy which I had on 22nd July 20, I have documented my journey so far on this forum https://community.prostatecanceruk.org/posts/t24531-My-LDR-Permanent-Seed-Brachytherapy-Journey  but suffice to say I am confident that I made the right decision, all the best with your treatment and will probably see you at Andy62’s group on 14th.


Regards


David

Edited by member 07 Jan 2021 at 00:19  | Reason: Inserting link

User
Posted 07 Jan 2021 at 10:11

Thanks DRAMCF, I have actually read through your journey and it was a contributor to my final decision, so thank you very much for taking the time to post it.  I am very grateful to everyone who has contributed and helped me to feel like I am among people facing the same issues and dealing with them.  Onwards and upwards eh?

User
Posted 07 Jan 2021 at 16:32

No Problem Hugh, glad it helped and all the best with the treatment.

User
Posted 15 Jan 2021 at 16:51

Attended Andrew's group call last night and what a great experience that was!  I was overwhelmed by the number of attendees and how helpful everyone was.  I came away from it convinced that i have made the right decision to choose Brachytherapy.  My only concern now is getting date for my procedure.  I am going to chase next week but i fear that Covid may be getting in the way.  Fingers crossed.

User
Posted 15 Jan 2021 at 18:46
I am very surprised, Radio & Hormone therapy, has not been offered??
User
Posted 15 Jan 2021 at 20:04

Originally Posted by: Online Community Member
Attended Andrew's group call last night and what a great experience that was! I was overwhelmed by the number of attendees and how helpful everyone was.


Thanks Hugh. I knew Julian would be fantastic. I'm just worried how on earth I match that again!! The peer-to-peer support worked very well too. Everyone was so disciplined in their answering of the questions, and having a co-host to make sure no one was being left out made things easier for me.


Also, last night was the first time I became aware of several members of this forum on a Zoom meeting.

User
Posted 20 Jan 2021 at 09:54

Hi there, I now have confirmed dates for my treatment: 21st Jan for prostate volume check (although i thought my consultant included that in his earlier diagnosis) and 4th Feb for the procedure.  Naturally I am much relieved to have a date, especially with Covid causing such disruption.  Here's hoping all goes well.

User
Posted 20 Jan 2021 at 10:29

Hi bob_suffolk - oncologist said she didn't want to do hormone treatment as my prostate was already quite small and no-one mentioned that RT might be an option.  Nevertheless, I'm happy with my decision to go for brachytherapy.

User
Posted 20 Jan 2021 at 14:39

Hi Hugh, Volume test is fairly straightforward and only takes a short time, it’s the final checks to ensure your prostate is definitely suitable for Brachytherapy, my Oncologist told me that once you get to the volume test stage they are almost certain that you are suitable for the treatment but it just the final check, all the best, David.

User
Posted 12 Feb 2021 at 10:12

So, here I am one week on from having my brachytherapy treatment.  I thought I’d leave it for a week so that i had a decent time period to report on.  Went into hospital on the 4th Feb and went through the usual pre-op tests and so on.  Worst part of that was the Covid test to be honest.  Had to wait quite a while as there were several procedures taking place that day, a mixture of RP and Brachytherapy.  I was quite anxious about the whole thing as i had never spent as much as one night in hospital in my whole life and can’t remember the last time i had a general anaesthetic. Anyway, after waiting from 1100 to 1530, with absolutely no food for over 24 hours and no water from 1300, i was finally taken down to surgery.  The staff were fantastic.  They went our of their way to put me at ease, obviously aware of my state of mind.  The theatre team were very friendly and once they’d inserted the cannula into my hand, and in the middle of a sentence, i was out like a light.


I woke up in the recovery room about an hour and a half later, and my first question to the nurse was, “did they do the procedure?”  I felt so good I thought there must have been a problem and they’d had to abandon it or something.  I was reassured that the procedure had been done and i was now officially ‘radioactive’.  Spent about half an hour in recovery before being wheeled back to the Ward around 7 p.m. - famished!


My state of mind was euphoric, even allowing for the effects of all the drugs, and i simply couldn’t believe that i was so well.  After some tea and toasted (nothing ever tasted that good!), i settled in fo the night.  The catheter was in and the flow was obviously taking place as the container was filling with urine, but to be honest i couldn’t even feel it.  I didn’t get much sleep that night as there were obs every two hours but i had my phone for music and podcasts to keep me company.  Honestly, i was on cloud nine.


Eventually around six a.m. the nurse came in to remove the catheter, which I’m prepared to admit was a little unpleasant, but soon over and done with.  I must have drunk, and passed, three litres of water throughout the night.  Consultant dropped in around 8 to check on me and i thanked him and told him all was well.  Then it was just a matter of waiting to be taken to x-ray, to check the seeds were all present and correct - 68 of them in total.  Having an ultrasound to check the amount of urine left in my bladder after filling the obligatory three bottles - not allowed to use the hospital toilets in case a seed dropped out.


Friday was a long day, only because of the waiting around, but eventually i got my discharge form and was free to go.  I was still feeling very well, although a little tired from lack of sleep.


So, what’s happened since?  Well, i may be very lucky, but apart from the the first two or three times i have experienced no pain while urinating.  There is blood in my urine from time to time, but it seems quite random.  I have no bowel issues and no abdominal pain, no incontinence, no nasty side effects whatsoever - so far.  I realise that it is only the first week and that things could still take a turn for the worse, but i am nothing short of flabbergasted at how well i feel.  I have been signed off work for two weeks and i am going to use that time and not rush things, but i have been out walking the dog and helping out around the place - no heavy lifting of course.


I have been taking Tamsulosin daily as instructed and am not brave enough yet to see if i can manage without it, but after my two-week ‘official’ period we may see what happens.  Also i have not noticed any ED issues as such, although i haven’t been particularly looking for them either!  Certainly the urination is the only area where i have noticed any issue, when i need to go i need to go, but I have been drinking over three litres of water a day, which is bound to have some effect.  I also did literally hundreds of pelvic floor exercises in the weeks leading up to the procedure which may have helped.


So, whereas i am not in any position to tell others what to do, i am so far a huge fan of brachytherapy over surgery.  Only time will tell if it has worked of course, but in terms of side-effects, i am a very happy bunny indeed.  I hope this helps.

User
Posted 12 Feb 2021 at 11:50
Hi Hugh glad all went well for you but as you say it is early days, I am 6 months further down the line from you but your experiences are similar to mine, I have tried to go off the tamsulosin a couple of times but it wasn’t that comfortable but my consultant told to do it in my own time but other than that life is good.

All the best David
 
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