First oncology appointment what to exoect

Hello Skye

please don’t feel nervous - this is the next step along the journey and a big move from the trials and tribulations of the diagnostics.

my best advice is to have a list of the questions you might want to ask such as:

external beam radiotherapy, brachytherapy - benefits, side effects etc

whether or not to have a hydrogel spacer to protect the bowel and, if so, will you have to pay for it etc

how long you r husband will need hormone therapy

the potential dates for radiotherapy ( there are wait times)

how many fractions ( usually 20 these days)

whether lymph nodes will be irradiated etc

we found our oncology consultant very polite, very attentive and very ready to answer all our questions etc etc. the whole oncology experience was so very much better than the urology experience. We were treated like human beings and not cargo on a conveyer belt!

We also asked for radiotherapy to be at times best suited for us to travel and this was granted!

my husband was asked to sign a consent form for the radiotherapy.

the oncologist also provided us with a copy of the mri and biopsy report when we requested it - something that urology could not, apparently, possibly do!

perhaps we were just lucky/unlucky in that the urology doctors were such poor communicators and the oncologist was a good communicator? I don’t know….

good luck and let us know how you get on

Hi WW

How interesting. Your experience of the urology consultant was similar to mine. She was very well presented, but could easily have been audtioning to be a Bond villain! Oncology registrar was much more sensitive!

Regards

Stuart

Ok that’s great thank you. Will see what they saying today. We know it will be 3 years hormone therapy and 4 weeks radiotherapy just wondered if urologist advised same treatments as oncologist or if we are to expect any changes to treatment. That we may have been advised from urology. 
as aberitone had been mentioned and for the high volume of cancer he has he had mentioned that chemo is sometimes used although it hasn’t spread to anywhere outwith the pelvis. 
As I did say to the urologist will he need chemo he just said he can’t say as it upto the oncologist and he might well want too so he didn’t want to say no ♀️

Hi Skye

My understanding, was that the urologist tested for urology issues. Once these have been discounted, and PC identified, then the oncologist will take over treatment. As a result, the urologist can only give general information, as PC is out of their area of specialisation.

Regards

Stuart

Hi Skye and Stuart, the urology department told us to expect 2-3 years of hormone therapy. The oncologist initially said 6 mts but then changed this to 18 months . Urology told us either 20 or 37 sessions of radiotherapy. The oncologist firmly said 20. So, I think Stuart is right, once you go down the chemo or radiotherapy route you firmly become an oncology patient. But, if you need urology intervention they take you back on board! 

@ Scampidoodle re "As a result, the urologist can only give general information, as PC is out of their area of specialisation". I had prostatectomy and my consultant / surgeon was a urologist and I am still under him even though my PSA is detectable and I will possibly have further treatment in due course. I think possibly the oncologist takes over if radiation treatment, chemotherapy and/or possibly hormone  treatment is to be carried out.

Hu static, WW, scampidoodle

aww ok thank you for your views I suppose I need to stop guessing and have patience to see what he says today. 
I would be suprised if he did need chemo as others with the same kind of diagnosis seen yo be just hormone and radio I suppose it would depend on how psa behaves with the hormone therapy. 

thanks again for all advice xx

What I disliked so much about the urology doctors was the fact that mostly they treated my husband like an object on a conveyer belt . We never saw the same doctor twice and never saw an urology consultant. We did meet one nice doctor but the others were like robots saying what they had been told to say and nothing more. It was the prostate cancer nurse specialists who seemed to smooth our passage! We then met the oncology consultant. He treated us like real people - telling us at our first meeting that we were to feel free to ask as many questions as we liked! He acknowledge me! He made eye contact with us both and smiled. All little things but they all built up our confidence at a very desperate time in our lives. I felt like we had been thrown a life raft.  I personally would not permit my gp to refer me to the same hospital urology department if I ever had a problem.I don’t know what my husband would do if he had to go back to urology.

Hi Static

How interesting and just goes to prove I have little idea of how these things work!

Regards

Stuart

Hi WW

Yes, I felt the urology consultant, as soon as PC was identified, wiped her hands of me. I only briefly met the oncology consultant - I felt she was just checking up on the Registrar, rather than imparting information.        ( I actually, rightly or wrongly, took this as a good sign - if it was really bad surely she would have taken the consultation?).

As with your experience I found the CNS to be brilliant. Explained things in 'Janet and John' language and seemed to have as much time as needed for me. That said, my head was totally in a different place, and, had my partner ( ex nurse) not been there, heaven alone knows how much detail would have been taken in.

Regards

Stuart