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Update post external beam RT

User
Posted 31 Jul 2023 at 17:47

To follow on from my last post:

I contacted the oncologists' secretary on 27th March to find out what was going on and she forwarded this reply from my oncologist:

"As per our previous discussions, unfortunately I am reliant for the spacer procedure via my other colleague at GSTT [Guy's and St Thomas'], who is in turn reliant on charity funding for the time being to help schedule the spacer lists, thus I cannot give a specific date yet. I have however had some communication from my colleague Dr *****, who was looking to schedule a list in April and has confirmed that you would be on the next list. I am however not sure if this would now be impacted by the recently announced Junior doctor strikes. As discussed during the 21/03 consultation, Dr ***** did not wish to schedule your case for the list in Feb as they were using a different make of spacer which he was not comfortable inserting for someone on dual blood thinners.

Reassuringly, there was also a recent update of we receiving some official funding for this procedure which we should be able to setup in the coming few months (as a backup).

I would like to reassure you that as long as you continue on the hormone therapy & your PSA remains low, the cancer remains under control and we can wait for these procedures to take place. As you appreciate, it is not a straightforward case and we have been trying to get the spacer inserted for you to help minimise the bleeding risk from radiotherapy in acute as well as late phase. I would like to reassure you that you are not lost in the system and we have been having regular appointments and maintained a waiting list to ensure this."

Things progressed quite quickly in the following weeks:

I had the SpaceOAR procedure and gold leaf fiducials placed around the prostate on 14th April - I did suffer with increased urinary frequency and urgency the week after the SpaceOAR, but that settled down in the following weeks

Planning CT and MRI scans, 28th April

37 fractions of RT - first dose 15th May, last 6th July. 2 Gray per session = 74 Gray total. The RT was directed at the prostate and seminal vesicles

I got through the 37 sessions OK. After chatting to them before the planning scan, the radiographers decided that I would be able to hold onto 220ml of urine fairly comfortably and I mostly didn't have a problem filling my bladder that much and holding on during the RT. On 4 of the 37 sessions, I had to come off the treatment table as the preliminary scan showed too much poo and air in the rectum even after the micro enema, so I had to try to poo a bit more. As the sessions went on, the urine flow rate decreased to a dribble and I had to pee in installments, but that has improved a bit in the 3 weeks post RT

My next consultation with the oncologist is in October. I will have a PSA blood test prior to that.

So it's just a question of monitoring PSA over the following months and years. I have to continue with the dreaded HT (Zodalex) until March 2025. Hopefuly the RT/ HT combo has done the trick (I was given a 70% chance of a cure).

User
Posted 31 Jul 2023 at 20:24

Good luck with your first post RT blood test. I get mine on 14th August and Onco appointment on 23rd. I must admit the anxiety is building but I’m doing everything I can to take my mind of it. I

User
Posted 31 Jul 2023 at 22:35

Hop all goes well. March 2025, seems a long time, but it will pass.

Dave

User
Posted 31 Jul 2023 at 22:47

If you are still peeing slowly, ask about taking Tamsulosin.

User
Posted 31 Jul 2023 at 23:37

Thanks Decho,

I've read through your profile and your journey is quite similar to mine - 3+4 Gleeson, right base of prostate - possible spread to right seminal vesicle. Can't really understand why surgery was off the menu - it wasn't an option for me because of a massive aneurysm of one of the major blood vessels in my pelvis (right common iliac artery), which was discovered on the prostate MRI scan I had leading up to the cancer diagnosis. It could have ruptured during RP surgery

I was offered RT of the lymph nodes too, but since there was no evidence of mets on the PSMA PET CT scan, I decided to just have the prostate and seminal vesicles treated

I can understand your anxiety about the first PSA test post RT next month - it's something all of us have to go through. I'm rooting for you.

Cheers

Nigel

User
Posted 31 Jul 2023 at 23:46

Thanks, Dave

Your profile is inspiring and reassuring. Good to see that you've got your testosterone back post HT and that PSA levels have stayed low

Cheers

Nigel

User
Posted 01 Aug 2023 at 00:05

Hi Andrew,

I have tried Tamsulosin prior to diagnosis when I was really suffering with my waterworks, but it didn't help me. When I got the diagnosis, a few weeks after I started on HT my peeing was much improved - the stream was much better and retention was down from 235ml pre HT to 81ml. I'm pretty sure things will settle down once the inflammation as a result of the RT has subsided - it's not where I want to be yet, but it is better than it was at the end of RT and immediately after RT. I'm going to leave it a couple of more weeks to see if there is further improvement.

Cheers

Nigel

 

User
Posted 01 Aug 2023 at 10:18

The hormone therapy will shrink your prostate by around a 1/3rd, which can take pressure off the urethra. However, long term you may have to revisit this, as after treatment is finished, the situation can reoccur. If the hormone therapy did help but the problems come back some time after you finish it, you could ask to try Finasteride, which is a half-way hormone therapy that also shrinks the prostate, but doesn't have as many side effects as the prostate cancer hormone therapy drugs. Just beware that Finasteride also halves your PSA test results, so you need to double them up to assess the state of your prostate. (Same if you take Dutasteride, another drug which does the same thing.)

 
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