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My HT/EBRT/LDR Brachy Experiences

User
Posted 14 Dec 2020 at 16:10

First a big thanks to this forum for guidance on the various issues/expectations for the decision making, especially Dramcf, JohnthePrint, LynEyre, Andy62 to name but a few. I think it’s only right that I reciprocate and document my experiences in case it might help others.

I was diagnosed Nov last year having visited the doctors due to nocturia. Aged 67, Psa 11, Gleason 4:3 with possible abutting tumour (T2/T3a). Fortunately, bone scan and lymph nodes were all clear. Very fit and active, ideal weight. More details in Profile.

Had the usual two choices, surgery or HT/EBRT which included LDR Brachy option as I met the criteria. After an agonising month in making the decision, I elected to go for the latter route as:

  • Relatively non-invasive.
  • Specialist nurse (at another hospital) felt that surgeons don’t always highlight side effects as much as they should, and felt the latter route “had the edge” in my situation.
  • EBRT would extend treatment area to around the prostate region. I had read that some people had surgery and ended up requiring EBRT giving two sets of side effects to handle.
  • Having the Brachy option as I understood adds another 8% or more in life expectancy after 10 years compared to straight EBRT. It also reduces the extent of EBRT side effects as I had 23 fractions compared to the normal 40.

I started the HT in Feb with the expected drop in libido, but fortunately no hot flushes or other issues. I was also pleased that treatment had also started and was stopping the growth in its tracks. Started on Tamsulosin to reduce nocturia- took a couple of weeks to take effect.  I was so pleased all my diagnostic tests were completed prior to Covid as any delays in testing would have increased my anxiety. Just had the last 3-month injection which will make one year in all. Regular exercise and weight/ resistance band training which helped keep my weight the same.

Covid delayed the start of RT by 3 months but wasn’t an issue as the hospital updated my plans and kept to this. In October I had 23 fractions of the prostate and surrounding area (inc lymph nodes).  This was ~ 8 months after starting the HT.  As has been mentioned often here the main issue was holding a full bladder. Being only 10 mins drive from the hospital was a huge benefit.  I did some “training” beforehand to make sure that I could hold 500mm water for 80 mins. As recommended here I took spare pants but didn’t need them, but it helped my confidence. Had some bowel issues which meant I had to go on a low fibre diet which solved the issue after a week. No urinary issues.

I then self-isolated for 2 weeks and as the Covid test was negative, had the brachy last week. I was very nervous as never had a General Anaesthetic before and now suffering from Atrial Fibulation that I thought might affect the Op. However, the chat with the anaesthetist beforehand allayed my concerns. Due to Covid they were only handling one Brachy per week, so I felt very fortunate that it was still going ahead.

I thought that the whole process was remarkable and having my own room for recovery was a welcome surprise. The staff were amazing! Found out that they had implanted 63 seeds making 115 greys adding to the 46 greys from the EBRT. Pretty powerful combination. I was pretty groggy from the Op, but soon improved. Consultant was very happy with the procedure. Catheter was removed after a couple of hrs. I managed to pass urine OK a couple of times and the Geiger counter confirmed no leakage of seeds. I left the hospital at 8pm, making ~12 hrs in all.

I had a very restless night the first night as had to go to the toilet about 7 or 8 times which I put the issue down to soreness from the catheter. Six nights on my urinary frequency is now around 3 times per night which I was expecting as the seeds begin their business for a few months. I suspect that it might get worse before it gets better…

Slight bruising soreness from the Op, but I have walked for an hour every day with no adverse effects. Aiming to play golf next week if I feel ok, though might only be for a part round.

I am very pleased with progress so far and full of admiration for the all of the NHS staff supporting me through the treatment. Scan in 5 weeks and chat with the consultant in 3 months to discuss the psa result.

In summary I’m very pleased with the whole process, especially having experienced minimal side effects. Just hope I’m as lucky with the outcome.

User
Posted 14 Dec 2020 at 16:41

Hi Vince,

It sounds like you had a text book procedure and got out faster than me and i thought that was fast.You are over the worst and i think the visits to the toilet will improve with time.Looking back i think i worried a lot more than i needed too and over thinking that i made the right decision between Robotic removal and Brachytherapy but i am very happy with the results four years on and can relax for twelve months till the next blood test.

I feel very privileged to be accepted by the members on here and the different views they gave to help with the difficult decisions at the time but also a few laughs in between some of the dark nights waiting the next oncology meeting.

Good luck John. 

Edited by member 14 Dec 2020 at 16:43  | Reason: Not specified

User
Posted 17 Jun 2021 at 17:27

Hi Vince,

Sounds you are doing and keeping up with all the information, no PSA sounds good to me mine is still not zero after four years five in September but will wait to see that result that i will have to get from my own doctor as my Specialist signed me off in January.Good luck you seem to be happy with the results.

Regards John.

User
Posted 17 Jun 2021 at 18:23

Your HT and testosterone recovery sounds similar to mine. About six months after HT was out of my system my testosterone was about 1.5 I was a bit disappointed with that, but three months later I started getting erections and at the next blood test PSA was 17.6 so for me it took about 9 months to recover but it was pretty rapid when it did. I hope you will find the same. My PSA is now 0.2, which is fine as I still have a prostate.

Dave

User
Posted 17 Jun 2021 at 21:31

I'm 6 months since Zoladex ran out. Last testosterone test at 4 months after Zoladex ran out was 0.2nmol/L (i.e. next to nothing).

Woke up with an erection in the early hours of this morning, so maybe the level is rising. On the other hand, did have a few instances of this while on hormone therapy. (First time it happened, I went and got my testosterone tested to make sure hormone therapy was working, and testosterone was also 0.2nmol/L.)

Next testosterone (and PSA) test in a month.

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User
Posted 14 Dec 2020 at 16:41

Hi Vince,

It sounds like you had a text book procedure and got out faster than me and i thought that was fast.You are over the worst and i think the visits to the toilet will improve with time.Looking back i think i worried a lot more than i needed too and over thinking that i made the right decision between Robotic removal and Brachytherapy but i am very happy with the results four years on and can relax for twelve months till the next blood test.

I feel very privileged to be accepted by the members on here and the different views they gave to help with the difficult decisions at the time but also a few laughs in between some of the dark nights waiting the next oncology meeting.

Good luck John. 

Edited by member 14 Dec 2020 at 16:43  | Reason: Not specified

User
Posted 14 Jan 2021 at 10:34

Week 6 update since Brachy ( 3 months since started EBRT)

Urine frequency. Initially chatted to nurse re nocturia who suggested ibuprofen as most likely an inflammation getting me up at night.  Worked a treat as soon calmed down to twice per night. Over the last week has been occasionally once per night which is bliss. Still drinking loads of water in the day so plenty of trips to the loo.

Bowel movements. Several weeks after RT finished, frequency was twice per day compared to my usual once per day. A few urgency issues so ensuring I eat lots of fibre.  Seems to have settled now, so just keeping an eye on things.

Bruising went away after about a month.

Exercise. Able to play golf after a couple of weeks but really took my time and didn’t over exert. Lots of walking every day.

ED. Some issues here but took sildenafil which has kept the blood flowing (use it or lose it mentality…)

CT scan next week to check distribution of seeds. Consultant meeting in 6 weeks time.

Hence it’s a case of “so far so good…” but hopeful for the future.

Vince

User
Posted 11 Jun 2021 at 16:30

A quick update/summary and a question on psa levels and what to expect.

- Completed RT in Oct 20 and LDR Brachy in Dec 20.

- Finished last HT 3 monthly injection in Nov 20, thus completing the one year course in Feb 21, so from that date on I was in new territory...

- Feb 21 and Apr 21 psa  both undetectable.

- May 21, went private for testosterone (to understand what's going on). 1.49 nmol/L so still very low. (Understand levels normally 6.68 to 25.7?). Nothing stirring yet in my nether regions...

Next consultant meeting in August. I'm going to ask for testosterone check as well as psa, which I understand is also useful to monitor?  Any other advice?

When do you think my psa levels will start to increase as the HT begins to wear off?

User
Posted 17 Jun 2021 at 17:27

Hi Vince,

Sounds you are doing and keeping up with all the information, no PSA sounds good to me mine is still not zero after four years five in September but will wait to see that result that i will have to get from my own doctor as my Specialist signed me off in January.Good luck you seem to be happy with the results.

Regards John.

User
Posted 17 Jun 2021 at 18:23

Your HT and testosterone recovery sounds similar to mine. About six months after HT was out of my system my testosterone was about 1.5 I was a bit disappointed with that, but three months later I started getting erections and at the next blood test PSA was 17.6 so for me it took about 9 months to recover but it was pretty rapid when it did. I hope you will find the same. My PSA is now 0.2, which is fine as I still have a prostate.

Dave

User
Posted 17 Jun 2021 at 21:31

I'm 6 months since Zoladex ran out. Last testosterone test at 4 months after Zoladex ran out was 0.2nmol/L (i.e. next to nothing).

Woke up with an erection in the early hours of this morning, so maybe the level is rising. On the other hand, did have a few instances of this while on hormone therapy. (First time it happened, I went and got my testosterone tested to make sure hormone therapy was working, and testosterone was also 0.2nmol/L.)

Next testosterone (and PSA) test in a month.

User
Posted 13 Sep 2021 at 20:33
I've recently had my blood test 9 months after the Brachy/ EBRT, and 7 months after the HT ran out. Some good news/ bad news and a question.

The good news is that the PSA is still undetectable.

Testosterone has increased slightly to 5.0 from 1.5 in May , I was hoping for greater. Guess I'll have to see how the next 3 months pans out...

I'm pleased that bowel movements have now settled out at once per day, per previous.

Sadly I have been recently making more night time visits to the loo. 2 to 3 times per night up from my usual once per night. It seems that this a feature of brachy in having LUTS (Lower Urinary Tract Symptoms) that I hadn't anticipated. Its not a urine infection so the GP has prescribed Solifenacin to add to the Tamsulosin that I already take. It's helped a little but I've not convinced.

Have others experienced these LUTS issues post brachy and for how long? How were they resolved?

Thanks!

Vince

 
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