Re post from this afternoon Postponed Biopsy

Hello Again Ronnie (RonnieMck) 

You are most welcome here - with a PSA of 36 and an MRI of PIRADS5 I don't think for one bit you are a fraud!

So - it's quite common on a Prostate journey for appointments to be cancelled or results to take longer than you think (I am waiting for my PSA from Wednesday's test !

You need to contact your Urology department and ask for a new appointment - if you can you can tell them you are available at short notice to take any cancellation - have your bag ready!!

RonnieMck said:

What followed I can only described as a mental breakdown.

Please do give our Support Line a call on 0808 808 00 00 (8am to 8pm 7 days a week) they will be able to direct you to some help for anxiety - you are of course free to vent here, we are none judgmental and have all been where you are now. (in fact if you click on my avatar or name you can see just where I have been).

It's open house here so feel free to ask any questions about Prostate Cancer - however trivial they are - you will get honest answers.

Best wishes - Brian.

Hi Ronnie,

I can empathise with your anxiety about a delayed biopsy and feeling a fraud. I felt a fraud for many years: I had 5 biopsies and 5 MRIs over 8 years, before I was diagnosed with PC last year on the 6th biopsy!

It was effectively being on active surveillance without having a formal cancer diagnosis, because every biopsy was inconclusive. It was pretty stressful having PSA tests every 6 months and annual MRIs and/or biopsies, and always feeling they missed it. 

A year ago, before my 6th biopsy, my PSA was 22. The MDT recommended a rebiopsy, because they felt the results (Gleason 6) did not correlate with the MRI and PSA data. The 7th biopsy was scheduled for late August, but cancelled at the last minute 3 times( September, October,  November) before it happened at the end of February this year. That is a 7 month wait to be rebiopsied. I think this is unusual, mainly because I was waiting for an MRI fusion biopsy, which is done under general anesthetic.

Regardless of that, it played havoc with my mental health, the constant delays, and I had a lot of anxiety and depression for a few months.

My worry was that a delay in final diagnosis was going impact the outcome for me, but everyone told me not to worry because PC is slow growing. 

After the rebiopsy in February, I had to wait 4 weeks for the result; I was restaged to T3a. I was sent for further tests: MRI, CT and bone scan. The first two were done in days, but the 'urgent' bone scan took 4 weeks. Then, finally 7 weeks after the first tests, I get a letter telling me the results of the tests, which, thankfully were clear - no metastasis- and to expect an appointment with the oncologist. That was a couple of days ago.

I am sharing this to let you know, you are not a fraud. I spent 8 years telling people I didn't have prostate cancer.

The waiting is horrible. Believe me, I waited 9 years before I could say the words I have cancer. You will get seen and tested; the delay is awful, but it is unlikely that your health will be compromised by the delay.

What helped me through the last couple of years was amazing support from Macmillan nurses, counselors and volunteers; I've been supported on phone calls and face to face. Unfortunately, my GP just pushed medication onto me which had marginal short term effect. Talking and getting counselling was more effective for me, and I would recommend it to anyone.

Good luck on your journey and fingers crossed you don't have to wait too long.

Hello Pura Vida 

A cracking honest and to the point post - the cancer journey has it's fair share of ups and downs and twists and turns!!

I wish you well moving forward - I read you think it may be surgery or HT/RT - have you looked at the brachytherapy option? It's not wildly offered but you sound to be suitable and there will be somewhere near you where it is offered.

Best wishes - Brian.

Thanks, Brian.

I believe I’m going to be invited to the Cambridge Prostate Cancer service at Addenbrookes Hospital for discussion about the treatment pathways. I have had plenty of time to consider all the treatment pathways! My preference is for RP, but I am keeping an open mind until I meet the oncology team. All part of life’s rich tapestry!