Starting RT

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

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!!!!