Update on 2nd PSE

Thank you Dafna .its much appreciated .

hugs 

Liz xx

Hi Dafna, I start my rt at Preston park in Brighton in 3 weeks time have you any more information about this facility would be helpful thanks Paul 

Hello johnam,

I had HT and radiotherapy with curative intent 8 years ago and recently found out through regular PSA tests and subsequent scans that my prostate cancer has recurred. I have recently started on a further course of treatment to deal with this.

I am now officlially incurable and my treatment is described as palliative. However, my consultant tells me I can expect this to work for several years and if it eventually stops working there are other treatments available, not to mention anything else currently being developed.

So, palliative is not the terrifying thing that many of us dread hearing, as others here have already said. I hope your OH's treatment goes well.

Hi johnam ,I was given a wrong diagnosis by urology ,and it's been stressful. I will meat with treatment team in four weeks and will mention this .

Urology diagnosis stage 3 g9

Oncology stage 4 g9

Crazy stuff 

Hope all works out for you and everyone else on here 

Hi Liz, I was in palliative care for over 5 years, but end of life palliative care, palliative care can be offered on the day of diagnosis for any life limiting condition, the main purpose being symptom control and pain management,  you can even have palliative care whilst going through treatment even one with a chance of cure. End of life is pretty much the same but refers to the last 6 months of life.  I have a palliative care team,have had them for a year as well as access to my hospice, and I hope to have four to five years yet. As for lymph nodes and radiotherapy, I had iliac left and right, peri and mesorectal  lymphs and bladder and Bowel involvement, had aggressive RT to the whole pelvic area, both Bowel and bladder  NED and all lymph nodes reduced by 70 to 80%. PS I was told one diagnosis and was given a different one in the letter too, and another one in my hospital notes,

Eddie xx 

Hi Paul,

Yes, that is exactly where Jacob had his RT.

There are all very nice bunch of people and the receptionist is so helpful. I used to call them on a treatment day an hour before to ask if there are any delays. In the first appointment there was a delay of 1.5 hours and it was hard for Jacob to hold on to a full bladder. Apart from the first appointment, it was always on time. 

The treatment itself is very simple, no issues. Follow the first treatment Jacob had difficulties urinating. That was not immediately after the treatment but 2 days follow the treatment. The RT people say to take paracetamol, but it sorted itself after few hours. 

Side effects: Jacob was more tired and fatigue in that 6 weeks but he carried on with normal activities including his daily swimming. They confirmed that he can swim between treatments.

They are always answer the phone when you need them and the RT technician will call you back for any question you have.

All and all NHS at his best!

And Paul, they have FREE parking! On the first day when you come they will give you the permit and the code. I called them a day before the first appointment and they gave me the code over the phone so we drove right in.

Good luck with everything

Lots of love

Dafna

Hi Dafna, thank you for the information,take care Paul

Thank you for getting in touch . It means a lot knowing  we are not alone in this 

regards

Liz & OH

Hi Mal.  My personal thinking in being told by the SP( specialist nurse) is do they have all the facts if not they should not be giving any information out . I get it people make mistakes but from day one on our PC travels it’s been a broken , rocky road. I think this is far more stressful when this happens and in this day and age it should not .  We complained about the time scales as my OH should have started his treatment within 62 days of referral and it’s been double that. All came back was more inaccurate facts so they can’t even get it right in two letters by NHS Lothian  Spouting data & costings . Absolutely no human element. So what chance do patients have. Keep in touch with us and what your oncologist offers 

regards

Liz & OH

xx

Omg Eddie , why do they give different information . I just don’t get it. Before I retired I would have been pulled over the coals if I made  possible life changing mistakes . Very interesting you had aggressive RT. I will raise this with the Oncologist and see what he says . I just felt it was a pretty “dismissive” that’s not the right word but he had no choices for OH . It was aberaterone, steroids, localised RT. Thank you for reaching out 

Liz & OH XX