First oncologist visit

Hello and welcome. If you have a look at my profile you can see how long things took for my husband 

Dafna,  there may be official guidelines but as you have started HR I don’t think there is any rush.  My limited understanding is HR needs to take effect before any other options are considered.  I got quite frustrated that the cancer was growing inside and was anxious to have treatment.  What I hadn’t appreciated was I was already on the only treatment for the first 4-6 months. David

Hi Shar,

I just read your journey and it so good to hear that your husband PSA dropped so much and you are almost at the end of the chemo. Brilliant. Thank you for all the info.

Love

Dafna

Hi David,

Thank you! I learn every minute more and more. We are going to see the oncologist privately tomorrow just to take the anxiety away and to put our heads in order. 

Your profile and journey is really encouraging me. I am so relieved I found this community.

Lots of love

Dafna

Hello Dafna

He's been started on Hormone Therapy, that's the start of his journey. The Prostate Cancer lives on his Testosterone, if he hasn't got any it can't grow and thrive so the HT will reduce his Testosterone very quickly. Once this happens Radiotherapy is usually 3 - 6 months down the line - however the cancer isn't going anywhere so the delay isn't an issue.

As you are seeing the oncologist tomorrow - make a list of the questions you have for him (otherwise you will miss something on the day) and if he's happy ask him if you can record the meeting (so you don't miss anything - record it on your telephone).

Best wishes - Brian.

Hi Brian,

Yes, the list is ready! Thank you for all the brilliant support

lots of love

Dafna

Hello Dafna- so sorry to hear your story. In relation to oncology appointment- my OH also advanced. Started HT then was told chemo should start within 12 weeks so that offered some time scale- I think we waited about 6 weeks then started chemo about 2 weeks later. He then had 2 months at the end and 20 sessions RT. 
if your oncologist mentions chemo you may want to check out the research here- there was some positive results with triple therapy ( hormone, chemo and another drug) sadly we were denied this as live in wales but I think others here have been offered. 
OH psa went from 12- 0.1 on chemo and hoping for better reduction but won’t know till Jan now. I’m not sure if if ever becomes undetectable whilst still has prostate but others will know better and also different labs are more sensitive apparently. 
All the very best for your appointment and like others say write all your q down. I ask to record the appointment and perhaps check as you are paying privately who you can contact if you have further questions. 
Take care xx

Hi Hanandy,

thank you. The information you mentioned is very useful. All the best for January results

Lots of love

Dafna

Dafna,  it is a learning game and certainly in my span of treatment time, both drugs and procedures have changed at a rapid rate, so when you think you know, it changes for the better.

just a cautionary note, I also flipped at the start as I didn’t think things were happening fast enough and went private.  The consultant I saw (who was great) recommended that I go back into mainstream NHS for the best treatment.  This caused a slight hiccup getting back into the system again, so I suggest you get your consultant to make sure you go back (and not to the back of the queue).  At this stage as Bob has said, you are not time dependent on the next treatment but equally you don’t want to get dropped from the NHS system.

Good luck. David

We also had a hiccup going from private to NHS, we seemed to fall into a hole where we were neither urology private or NHS oncology. Persistence on my part paid off but it took a few phone calls with me getting cross on the last phone call.