Side effects of radiatipn therapy. EBRT prostate cancer

User

Posted 18 Feb 2019 at 22:30

Looking to share side effects of radiation therapy EBRT for prostate cancer...2 years out from therapy.

Present psa is .12 after a bump to 2.4

User

Posted 18 Feb 2019 at 23:29

I'd certainly be interested in knowing your experiences. I'm currently undergoing RT; 5 fractions out of 32 now completed.

Chris

User

Posted 19 Feb 2019 at 00:05

Did 45 sessions

Sessions want well

Had difficulty keeping my bladder full for sessions (wet myself once during session) embarrassing but staff were great about it.

Had a difficult time with urination and bowel movements happening at the same time whether standing or sitting...lasted a week or so then settled down.

Started taking tamulsafen to help keep bladder problems under control ...started with 1 per day then 2 per day...still at that level...could easily maintain on 1 per day but worried about incomplete emptying

Bowel problems have lessened but still have to use dietary measures to keep regular as normal contractions are still problematic

Got scared once because psa levels bounced higher on third follow-up blood test...was reassured that that was common...has returned to a lower level after 4th test.

Had three in a row blood clots in urine a month ago...then none since. Unknown reason.

Had several episodes of split stream urine over the 2 years...why?? Who knows.

Sexual functioning has decreased some since therapy...erections are functional but...oh well, I am 77 yrs old so...

User

Posted 19 Feb 2019 at 06:46

How long after treatment was the bounce?

User

Posted 19 Feb 2019 at 07:50

Are you still on HT

Barry

User

Posted 19 Feb 2019 at 16:18

18 months

User

Posted 19 Feb 2019 at 16:20

Finished HORMONE therapy before starting radiation

User

Posted 22 Feb 2019 at 20:50

I’m continuing with HT whilst having radiotherapy, indeed had HT injection this morning & radiotherapy session this afternoon

User

Posted 22 Feb 2019 at 20:56

Originally Posted by: Online Community Member

I’m continuing with HT whilst having radiotherapy, indeed had HT injection this morning & radiotherapy session this afternoon

That's what seems to be the normal practice. I'm due to be on HT for two years in total: 6 months prior to RT and then 18 months further.

I'm now 2 weeks into my RT (due to have 32 fractions in total).

Chris

User

Posted 27 Feb 2019 at 23:02

HI , had Radical prostatecamy near 3 months ago with a gleason 3+4 Psa 48

Non nerve sparing as it spread to seminal vessels and to lymph, so they removed parts of lymphs. Had PSa 10 weeks after surgery which showed 0.06 which i thought was low but they said should be 0

Because of pathology report showing cancer was worse , 4+3 and positive margin. They suggest we fo raditherapy and hormone , but want to wait 6 weeks to see if Psa goes down etc

Please can anyone tell me the side effects of radiothrapy and hormone Therapy, even though i know what they are i still havent met anyone that has had the radiotherapy and hormone therapy AFTER surgery.

They told me my incontinence will be as it is before i have the RT and HT and since i have had Non nerve sparing then it wont effect my erectile dysfunction neither. Also i read about spasms, rectile bleeding and cramps, are these if any permanent or just in the early days after treatment. And does the HT lose your sex drive altogether or is there hope there. Sorry for too many questions :)

User

Posted 27 Feb 2019 at 23:21

Ridiculous to suggest that you need RT/HT because of a PSA of 0.06 so there must be a bit more to it than that - it is more likely to be because of the lymph node involvement and high volume of cancer found. Did your pathology show positive margins?

There are loads of threads on here about radiotherapy and HT after surgery, it is quite common - despite men being sold the idea that surgery can eradicate the cancer it seems that for a rather significant number it doesn’t.

Edited by member 28 Feb 2019 at 00:18 | Reason: Not specified

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

User

Posted 27 Feb 2019 at 23:30

HI Yes they said it showed positive margin and alot of cancer on the left side and invaded lymph, hence why they predict it cd return and question is as always do we treat it based on the pathology report or wait to see a rise. Anyway they are wanting to wait till april 17 to see psa. Funny thing is that 2 different hospitals told me the cancer was only bulging and hadnt penetratred the wall. I did wait a few months b4 having the surgery but doubt it grow that quick, oh well i guess it cant always bee seen clealy as to its status. Thanks

User

Posted 28 Feb 2019 at 00:25

Sorry - I realised too late that you had already said positive margins were found. Seems a no brainer then to go for the adjuvant therapy - the main problem tends to be for men who have not regained continence. Loss of libido is almost always a side effect although we have had a couple of members in the past who were not affected at all.

Generally, the side effects of RT emerge later in the treatment or a number of years afterwards. In our house, there weren't really any side effects at all at the time, and it is only now 7 years later that he is finding it a little more difficult to sustain an erection.

If it makes you feel any better, our local hospital has been part of a trial that offered all men adjuvant RT/HT following surgery regardless of pathology - the results so far have been very positive.

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

User

Posted 28 Feb 2019 at 22:31

Thanks Lyn, Your information has made me feel alot better. Was there any other side effects and any long term apart from the incontinence and erections situation. I mean ive read theres cd be bleeding, stomach spasms cramps etc and was weight gain a real problem. Thanks again

User

Posted 28 Feb 2019 at 22:34

Hi Jayrob, how are you now? how were the side effects of radiotherapy and hormone treatment whilst you were on it and what about afterwards short to longterm? How are your Psa readings.

Regards Herc

User

Posted 28 Feb 2019 at 22:52

Originally Posted by: Online Community Member

No. As I said, John had no side effects at all from the radiotherapy apart from needing a nap some afternoons towards the end. He worked full time throughout and continued playing rugby; he also carried on going to the gym most days.

Weight gain is usually a side effect of the hormones rather than the radiotherapy but it can be minimised if you are already fit and stay active throughout.

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

User

Posted 28 Feb 2019 at 23:10

Thanks. God bless you and your family Lyn

User

Posted 01 Mar 2019 at 08:25

Herc, everyone reacts differently to HT, so it's impossible to say what side effects any particular person will experience. I've been fortunate - I've been on HT since last August and although for the first month or so I felt very tired and fuzzy-headed, all that's now worn off and the only side effects I'm left with are the expected loss of libido.

I'm undergoing RT at the moment. I'm just under halfway through my treatment (3 weeks in) and thus far the only side effect has been difficulty urinating, which a prescription of a drug called Tamsulosin soon sorted out.

Hope that's of some help,

Chris

User

Posted 01 Mar 2019 at 12:39

Hi thanks chris'. Is the urinating issue supposed to be ongoing or did they say anything re that. Thanks

User

Posted 01 Mar 2019 at 14:44

It's an extremely common side-effect of RT. Basically being bombarded with radiation makes the prostate swell up, and hence restricts the flow of urine, similar to what many men experience following a prostate biopsy. I am told that the effects should gradually subside once treatment is complete, but the Tamsulosin has sorted out the problem.

Chris

User

Posted 01 Mar 2019 at 15:48

Interesting Matron Kierkegaard, that you mention a local trial of HT combined with RT for everyone, post prostatectomy, regardless of the post operative pathology results.

I have consulted with two oncologists and the local prostate nurse, and none of them suggested adjuvant therapy in my case, despite some adverse biopsy results. One said: ‘We don’t want to poison or irradiate you and make you more ill than you are already at this stage’.

In fact, I have never felt so well. Is there a name for the trial you mentioned, and are any preliminary results available to view?

Cheers, John.

User

Posted 01 Mar 2019 at 16:14

Hi john, what was your situation. psa . gleason before and after surgery also was urs a postive margin. herc

User

Posted 01 Mar 2019 at 16:25

Hi chris what was your psa afyer the surgery before you started HT. Thanks herc

User

Posted 01 Mar 2019 at 16:41

I didn't have surgery, Herc. The urologist recommended against it, so I went down the HT+RT route. I was Gleason 3+4, T2C N0 M0, with a PSA of 32 on diagnosis.

Chris

User

Posted 01 Mar 2019 at 17:38

Originally Posted by: Online Community Member

Hi john, what was your situation. psa . gleason before and after surgery also was urs a postive margin. herc

You can check my profile for that information. Gleason was 4+3=7, PSA 16 odd, no symptoms, post-op bio was upgraded to T3aN1M0 from T2a after two removed lymph nodes were cancerous and there was also a 'focal' breach of the capsule.

Anyway, I am now cancer-free with undetectable PSA, so I am keeping calm and carrying on. Two specialists have told me I will die of something else.....Can't wait!😉

Cheers, John.

User

Posted 01 Mar 2019 at 18:25

I had 20 sessions of rt .Finished 7 feb ,awr on the 9 feb . After having cathter out last tues , after acute water retention , had hope waterworks would be ok , it has in a fashion , but slow slow flow plus urge how and again . been on tamulosin for 17 days one a day , i think i will see doctor see if i can increase to 2 aday ? as the consultant said first 2wks ok its the second 2 side effects kick in . i know side effects is individual i wonder on average how many weeks after rt things improve ?

User

Posted 01 Mar 2019 at 22:47

Hi John so you had surgery and NO RADIOTHERAPY after, is that correct? What was you PSA after the surgery? Thanks Herc

User

Posted 01 Mar 2019 at 23:05

Herc, you can click on John's (or anyone else's) picture and then select "View Profile" to read their details. Most of the "regulars" here keep their profiles updated.

Chris

User

Posted 01 Mar 2019 at 23:10

HI cheshire chris , yes i have checked profile but doesnt show that there. Thanks Herc

User

Posted 02 Mar 2019 at 02:27

In five tests in the nine months since my surgery all PSA readings have been ‘undetectable’. Our local billion-pound super hospital only tests down to 0.1, so <0.1 is undetectable. I had one at the Royal Marsden which only test down to 0.04, and that was <0.04.

Three consultants I have spoken to all said that PSA tests down to multiple decimal points (known as super-sensitive assay) are of limited value. And they all agreed that adjuvant radiotherapy was not appropriate in my case.

Cheers, John.

User

Posted 04 Mar 2019 at 09:47

HI Is great to hear you are clear now :) My Biopsy stated Gleason 3 + 4 (7). PSA 34 and bulging the capsule on right side but not penetrated T3aNoMo, went up to PSA 48 before the surgery( i put this sudden rise down to alternative therapy i had and all the juicing).

Post surgery Pathology states T3b With seminal vessles invaded and lymp node involvement which they removed near the prostate, and a PSA of 0.06 and this was at the ROYAL MARSDEN too.

Because of the Pathology report and PSA detecting 0.06 they think i will need RT And HT BUT, as the psa test was done

after 6.5 weeks and 2 psa were done 2 weeks apart which were both 0.06, they want to wait 8 more weeks and see but feel i will need RT. Lets wait and see. I really pray i dont need it. Thanks

User

Posted 04 Mar 2019 at 11:48

There are 2 schools of thought here. RT might not be necessary which seems to be the way the Marsden are advocating in your case and only have RT subsequently if PSA rises and perhaps some cancer shows up on scan or hit largely the Prostate bed now with RT before any cancer cells move further away which is another alternative being tried at some hospitals. In your shoes I would go with what the Marsden suggests as they know your case best and have an excellent reputation.

Barry

User

Posted 04 Mar 2019 at 15:25

HI Barry , yes you're right. Gona wait to see what happens in APril with the psa, but they said because of pathology good chance i will need RT. Thing is PSa now is 0.06 if it goes down to 0.05 or stays same and they dont treat it, and then down the line it comes back, i think is less chance to cure it becuase lets say it rises to 0.07 and then 0.09 anf they decide to treat it... even though the psa still shows low, the cancer couldve still moved from prostate bed ( thats if this is what is the reason for the 0.06 now. Thing is i think some hosptials lean towards doing RT whilst it is early in case can cath it early even though it is very low psa. Also i just hope that by april it isnt too late to treat it with simple RT. Thanks again The prayers continue for ll of us.

Herc

User

Posted 04 Mar 2019 at 15:26

Whats your story Barry, everything ok with you? Herc

User

Posted 05 Mar 2019 at 01:03

Herc, thanks for asking but my story is a long one - its under my bio (click on my avatar) but now makes for more difficult reading because since the 'site' reformatted it, (why?) instead of being spaced out they have now run it into a long unbroken record. Also, I wouldn't want to side track this thread by going into great detail.

I will just say that I am convinced that the RT I had in 2008 severely knocked back my PCa as evidenced by PSA and scans with only significant problem over HT being increased urinary frequency and urgency, which reduced to pre RT levels by 2 months post RT. I did have a new small tumour grow in the Prostate which was treated by HIFU in 2015, again with no significant side effects after pains for a week while catheter was in. A further small tumour was found in 2018 but is considered too close to my rectum for further HIFU. I am investigating the feasibility of having this treated by Focal Laser Ablation (FLA) as this treatment is said to be able to treat closer to the rectum. Unfortunately, FLA would likely mean going abroad and even if this proved successful, a further tumour might become more significant or alternatively if the present tumour was untreated it might never be a problem or one that systemic treatments might hold at bay for several years. This is one of the sometimes impossible questions to answer, viz is treatment necessary and I can tell you from personal experience that experts looking at the same scans and histology can sometimes disagree on this?

Barry

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