Metastatic prostate cancer

You will not sound stupid at all no matter what you ask - we have all been where you are in a totally alien environment and learn off each other. Look forward to hearing your list and someone is bound to get back to you who has been there, done that and worn the T-shirt. Don't be surprised if things sometimes go off piste as quite a few have a wacky sense of humour - it helps us get through.

Hi Majestic and a warm welcome from me, please ask any and all questions we all start off knowing very little about our cancer, but you have many new friends here, everyone happy to help you any way we can.

Eddie xx

Thank you Dafna. I try to keep positive at all times but I can’t help worrying at times. I am not used to seeing him weak or ill and I am anticipating that chemo will do just that. We will see what happens.

As to planning trips, we normally travel a lot and have a holiday in Spain booked in two weeks that we have not cancelled. We both agreed that it will do us some good to go away, he will have his first HT injection just before we go and chemo will start when we are back. We have another trip planned in August which we might have to cancel depending on chemo. 

We just have to make adjustments and we accept that. What matters the most is that he is treated and feel good.

Hi, can I just ask how long a referral usually takes to see an assigned oncologist. No timescales were mentioned. Is it early on or am I being optimistic. This is all so alien and totally out my depth. Thankyou

Hello Majestic, 

Here is our timeline as we started this journey with the NHS earlier this year:

22/03: MRI results detecting an abnormality in the prostate. 

14/04: Biopsy

25/04: Biopsy results. Due to high Gleason score (4+5 = 9), the NHS booked us the following appointments:

• Bone Scan to check for spread: 08/05 
• Oncologist: 20/05 - At this appointment, the oncologist prescribed a PSMA PET scan as bone scan revealed the cancer had spread to the bones. At that point he had already done the PET scan privately but awaiting results.
• Urologist: 30/05

After the biopsy and seeing that those dates were almost a month away, we decided to go privately (alongside the NHS initially). He did the PET scan privately on a Thursday and we got results 5 days later and saw the oncologist the next day to discuss treatment plan.

Please do nudge the NHS if you don't get your appointments fast enough. They often try to accomodate where they can.

Best of luck x

Thanks so much Myrtille, I’ll keep badgering if I don’t hear anything in the coming weeks. Just feel out of control. We’ll get there eventually. Good luck to you both. Xx

Hi Magestic,

I just read your profile and you have already started treatment with bicalutamide and zoladex.

This is the protocol start of treatment and it works a treat. The PSA will drop like a stone and the PC will get depressed where ever it is in the body. Indeed, as the other wonderful members say, nudge and press and chase for your oncology first meeting but do not stress about it. The treatment started already and it is fighting the PC as we speak. 

Good luck with everything.

Dafna

Hello Majestic, I was diagnosed June 2022, similar to you APCa with mets to left pelvic iliac nodes, but to seminal vesicles as well, all tests done by end of July all at urology, and saw medical oncologist 3rd of October 2022, so a 4 month wait for me from diagnosis, which from talking to others who also went through my local hospital, 4 months was a typical wait. though I do not know how my hospital compares to others. I can say, though you haven't seen your oncologist yet, she/he will be discussing your treatment every week with your multi disciplinary team, MDT, one of which will be your cancer nurse specialist CNS who you should be able to contact and ask any questions you have, best wishes.

Eddie xx

Morning Majestic As others have said your on the 1st rung of treatment which will suppress the PC but it doesn’t stop you worrying hopefully you’ll get the appointment soon and keep the chin up and stay positive as its a big factor in fighting PC as soon as I started HT a big weight was lifted off my mind and it’s pushed me into my fitness with losing nearly a stone in a month and I’ve just got positive thoughts in my mind going forward,take care Robert xxx

Hi Robert.

What a great inspirational post!

Dafna