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Starting RT

User
Posted 15 November 2017 19:54:31(UTC)
Hi everyone,
I have had Robotic surgery in August and when my Histology report came back it was Gleason 7 (4+3) T3a.
I have had my first consultation with my Oncologist and she has suggested ( but has to be my decision) to have Adjuvant RT to make sure or zap any cancer that might have been hiding somewhere. I have another meeting with my Oncologist next week followed by CT & MRI scans with a view to RT treatment starting early January for approximately 6 weeks.
I just wanted to ask on the forum if anyone has went through something similar and I would very much welcome any information and reassurance.
I have just turned 50 in August.

Thanks
Enda
User
Posted 16 November 2017 00:11:29(UTC)

I am rather surprised that no one has responded to your post yet as we have a number of men who have had RP followed by RT. I am therefore primarily posting to get your post back where it is more likely to be seen an hopefully replied to by somebody with first hand experience.

I expect that before making your radical treatment choice that with a T3A is was explained to you that there might well be a need for follow up RT. A friend of mine was in a similar situation with a T3A and the surgery was not of itself able to eradicate all the cancer. He subsequently had HT for a few months and this was followed by RT. It seems he was one of the lucky ones because some ten years on his PSA is undetectable. If scans do not show any cancer or it was not indicated when surgery was done, the RT is rather like blasting with a shot gun in the dark so results can vary. However, RT after RP seems to be becoming more frequently undertaken.

Barry
Thanked 1 time
User
Posted 16 November 2017 07:22:41(UTC)

Morning

I ad the same approach (see my profile).  Gleason 9, RP followed very soon after by HT and RT, aimed at prostate bed and lymph nodes.  To be honest, I fount the RT harder than the RP towards the end, but the treatment made sense to me.  If you have any questions, please feel free to PM me.

 

Thanked 1 time
User
Posted 16 November 2017 07:30:55(UTC)

Has the oncologist said whether your RT would be with hormone treatment or without? It makes a big difference in terms of side effects, lifestyle, holiday insurance, etc

Since you are still young, you could also ask the onco why s/he is recommending 6 weeks at standard dose rather than 4 weeks at a higher dose. Research is suggesting that the 4 week treatment has less side effects and slightly better results.

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


User
Posted 16 November 2017 10:41:00(UTC)

Hi Enda,

My experience is as follows.

5th Sept 2013. diagnosed with Prostate Cancer PSA 4.12ng/ml  6 out of 10 biopsy cores had cancer cells Gleeson 7 (4+3) T2 but may turn out to be T3. Usual appointments and tests after which I decided on robot assisted surgery.

27th Nov 2013. Robot assisted surgery went home with catheter. No pain and no problems. Catheter removed 6th December, no problems other than minor incontinence sorted out with pelvic floor exercises.

9th Jan 2014. Consultation with surgeon. Cancer poking out of capsule so left Seminal Vesicle removed. histology showed clear margins, now T3b. PSA 0.03ng/ml, if it rises to 0.20ng/ml follow-up radiotherapy will be needed. Surgeon told me about RADICALS trial and arranged a consultation with Oncologist to discuss it. Started with viagra and pump - no success.

13th Feb 2014. Consultation with Clinical Oncologist about RADICALS trial (there were some good online videos about it - they may still be available). I decided to go for adjuvant external beam radiotherapy without the lottery.

26th Feb 2014. CT & Planning at St James Leeds. Introduced to the dreaded micro enemas and given my supply for the treatment also the water drinking.

21st March 2014. External Beam Radiotherapy started, 20 fractions (treatments) Monday through Friday for 4 weeks, Saturday and Sunday off. I traveled to the hospital by walking, bus & train' the walking would have been about 4 miles in total. The treatment was fine for me just a little skin sensitivity. The micro enema was a bit of an issue for me as my movements were regular so my bowels were empty when i took the micro enema. the drinking of water to fill the bladder could be a problem if there were any delays so a good idea is to check for delays before you start drinking. The staff at St James Leeds were very helpful.

To sum up I didn't have any real problems with the radiotherapy. I understand that external beam radiotherapy does leave scar tissue that might be an issue if you require any other pelvic area surgery later, you might want to ask about that.

Where am I now - I feel fine PSA did have a blip to 0.09ng/ml I was concerned but the doctors were not, it is now 0.01ng/ml. I think I got too concerned about PSA results. The only down side is that I have erectile dysfunction (ED) which I guess is down to the surgeon making sure he got clear margins. I have had consultations for ED and tried various treatments without success, there is always a price to pay.

I hope this helps but remember peoples cancers are not all the same and their reactions to treatment are different. Get the Prostate Cancer Books, read them and formulate your questions to your consultant, don't be afraid to ask questions and ask for clarification, most doctors and consultants are happy to be asked questions and give answers. If you were having a plumber or builder doing work at home you would ask questions and expect answers so the doctors should do the same. Talk to the Prostate Cancer UK specialist nurses they are very good and were a great help and support for me.

I wish you all the best, remember I am not an expert and can only tell you about my personal experience. Remember to try and keep positive and look after those close to you.

NormanA

 

 

 

 

 

 

User
Posted 16 November 2017 12:05:00(UTC)
Enda,
I had RT over a 7 week period, this is when you knew you should have practiced more of the pelvic floor exercises.
First thing in the morning drink 500ml of water, this will hydrate you for the beginning of the day , you will need to turn up for your appointment at least one hour before your RT and use the suppository provided to clear your bowels. Then 45 minutes before treatment drink 500ml of water and hold it until your treatment , this can be very difficult but it can be done, it is frustrating at times if the treatment is running late.
Make sure you enquire on arrival if treatment is on time , this will help you when doing your preparation , over the 7 weeks I met several guys in similar circumstances and you felt you were not alone, all sharing experiences of living with PC .

Hope this information is useful & helps, in the meantime best of luck.

James
User
Posted 16 November 2017 20:14:18(UTC)

Trebor's description of the treatment is not necessarily how it is done at all hospitals though. John arrived at the hospital around 8.20am, drank his 500ml water on the way in, his appointment was usually 8.30am and he was on his way to work well before 9am. Exception was Wednesdays when he saw the oncologist afterwards for a review of side effects etc. No suppositories, no enema - I think a lot of it depends on the hospital you are under and how good a man is at emptying his bowel naturally but some of it must also be down to luck or consultant preferences as John was at the same hospital as NormanA who did have enemas!!!!

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


User
Posted 16 November 2017 21:22:29(UTC)
Thanks for the info. I am not getting HT only RT and as I have a meeting with my Oncologist next Tuesday I will ask the question regarding 4 weeks V 6 weeks .
Thanks again
User
Posted 16 November 2017 21:32:40(UTC)
Thank you very much Norman really helpful advice.
User
Posted 17 November 2017 08:41:55(UTC)

Hi Enda,

 

I'm glad I could help you. Make sure you don't let all this spoil Christmas and the New Year. If I can be of any further help drop me a line.

 

NormanA

 
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