My radiotherapy journey

User

Posted 12 Jul 2020 at 09:16

I haven't updated for a couple of weeks because not much happened really apart from the daily slog to and from the centre.

Anyway I have now completed 27 sessions with twelve to go. I asked the oncologist about the need for 39 fractions. He told me that this was the optimal amount now and that some other centres were now doing 41.

Side effects are much the same although the urination problems have worsened somewhat to the extent that I now take two tabs of tamsulosin which has improved the flow slightly. I did have some leakage onto the table on one occassion which was a little embarrassing.

All in all however I feel that it is going well so far. I can't wait for it to be over it's very tiring and tedious.

Bill

User

Posted 12 Jul 2020 at 10:32

Originally Posted by: Online Community Member

I did have some leakage onto the table on one occassion which was a little embarrassing.

Same here, although I only leaked enough to dampen my underpants. I switched to wearing disposable pants at that point. I never actually pee'd into the disposable pants during the RT, but the security of knowing I could was comforting.

User

Posted 12 Jul 2020 at 20:35

Nearly there, Bill. Once you get into single figures the end is really in sight. Glad that you’re doing reasonably ok in terms of side-effects.

Best wishes,

Chris

User

Posted 21 Jul 2020 at 16:14

Everything was going well, 32 sessions done and 7 to go, until yesterday.

The machine developed a problem and as of now has still not been fixed. Does anyone know if a long break in the treatment is detrimental to its success?

I am a little worried about this so any information would be welcome

Thanks in advance

Bill

User

Posted 21 Jul 2020 at 18:12

On Easter weekend, men may not have a session from Thursday until the following Tuesday so although it isn't ideal, it isn't a crisis either. If the repair was going to be more than a few days, I would expect the hospital to look at transferring you all elsewhere.

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

User

Posted 22 Jul 2020 at 14:46

Thanks Lyn. Thank goodness they have repaired the machine and I resumed treatment today. They will also treat me on Saturday to make up for the lost days

Bill

User

Posted 30 Jul 2020 at 08:31

At long last my R T treatment is over. It will be good to get my life back after this 8 week trial.

Can anyone tell me how long the side effects will take to clear, the doctor said about 3 to 4 weeks, but what do they know?

Next will be a PSA test in two weeks and my second zoladex jab

Bill

User

Posted 30 Jul 2020 at 08:48

I was told that the immediate side effects (fatigue, bowels, bladder, blood in urine, mucus farts etc) would get worse over the next 2 weeks (and they did!) then improve over the following 8 - 10 weeks (they did). But I had to wait almost 7 months for a PSA test, because I was told the radiotherapy 'messes up your insides' badly, and it takes that long for them to settle down and heal enough to give a reliable PSA level. Side effects of the hormone therapy, if you had it, take much, much longer. I was told it can take a year or more before they wear off. I had my last 3-month hormone injection last September, and the side effects are still with me. Not much you can do in any case - just bear with it.

Hermit.

User

Posted 30 Jul 2020 at 09:21

Originally Posted by: Online Community Member

Funny, I've had 3 PSA tests since RT finished last October 0.06, 0.04, & 0.02

It seems different hospitals have different answers to the same problem..... 😎

User

Posted 13 Aug 2020 at 09:23

Hi all,

Yesterday I had my second Zoladex injection and found out the result of my first psa test since finishing RT.

The score was 0.03 ng

The oncologist was happy with this he said, any thoughts anyone?

Bill

User

Posted 13 Aug 2020 at 11:19

That's excellent but continue with PSA tests at prescribed intervals. If you continue to record such low figures, the length between tests will be increased.

Barry

User

Posted 13 Aug 2020 at 11:30

A very nice result. Do you know if it was 0.03 or <0.03 ? lots of people don't mention the less than symbol, but if it is there it means your result is lower than the machine can detect it may even be zero.

Dave

User

Posted 13 Aug 2020 at 15:27

Yes indeed Dave it was <0.03. The Oncologist did explain that this meant virtually zero. My next test will be in 3 months when I have my next Zoladex injection.

User

Posted 13 Aug 2020 at 18:04

Excellent result. Long may that continue.

Ido4

User

Posted 06 Nov 2020 at 14:26

More than three months now after RT. The following are side effects I am experiencing:

Hot flushes

Piles

Shrinking testicles

Total lack of libido

Aching hips and legs and numbness of my right foot sometimes accompanied by pins and needles.

My PSA is under 0.02 and my testosterone level is 0.4

The oncologist is sending me for an MRI of my pelvic region and legs.

Otherwise I'm fine!

Bill

User

Posted 06 Nov 2020 at 17:24

Hi Bill, I think they are mainly side effects of HT not RT.

Piles and hip, pelvic pain might be to do with RT, they were all in the path of the radiation beams. With your psa so low, I don't think the mri will be looking for metastatic cancer, they might be looking for something else.

How much longer will you be on zoladex? I've been off it for six months but still zero libido.

Dave

User

Posted 06 Nov 2020 at 17:30

As someone also waiting to get their libido back after HT I found the below:

https://bjui-journals.onlinelibrary.wiley.com/doi/full/10.1111/j.1464-410X.2006.06013.x

"35% were in the normal range at 12 weeks, 85% at 18 weeks, 89% at 24 weeks, and 96% at 1 year."

User

Posted 06 Nov 2020 at 18:00

Hi Dave, I'm afraid I've got another year to go.

Bill

User

Posted 07 Nov 2020 at 14:27

Well HT ain't much fun, but I accepted it as a price worth paying. My HT started at diagnosis for 24 months with RT at 6 months. Some studies show 18 month HT has same outcome as 24 month HT so I did consider stopping early, but medics said that's not what we would normally do, so I decided I may as well not upset the apple cart and stuck with it. I guess if the side effects are really bothering you you could stop HT, but I think you probably should keep on it for the full term to have the best chance of knocking the cancer on the head. If my cancer returns and doctors say HT for life I would have to think very carefully about whether I would accept that.

As mentioned a few times I haven't fully recovered from HT but I'm just getting on with life. Next psa test is 2 weeks time I will then update my profile with results.

Dave

User

Posted 08 Nov 2020 at 12:22

Thanks Dave, yes i will definitely try and tough it out, otherwise there was not much point in struggling through the RT treatment. That took quite a lot out of me.

Bill

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