Newly diagnosed after years of testing

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Hello there.

After following the forum for a couple of weeks, I've decided to join it. I am 61 and was diagnosed at the end of July after a very long journey. I could say that although I didn't get the diagnosis until three weeks ago, the journey actually started nine years ago. I had a routine health check, which included my first PSA test in 2015 and it came in at PSA 4.05.

Since then I have had annual or semi annual PSA tests, five MRIs and six biopsies. I have watched my PSA climb to 22 this year, and until July, MRIs and biopsies were inconclusive. My July diagnosis of Gleason 6, T2c is provisional, subject to the results of a CT scan and bone scan which I had the week after diagnosis. I also need a repeat biopsy next week as it seems an area in the front of the prostate, which has PIRADS 5 on the MRI scan, was missed in the biopsy and is not consistent with the Gleason 6 findings.

I feel very much in limbo, and it seems unlikely that I will get the full diagnosis and a management plan until the middle of September. I was told, due to backlogs its taking 3-4 weeks for MRI results to come through. The waiting period is horrible.

As my prostate cancer journey has taken a long start, these findings do not come as a surprise, and I always expected this to happen one day. I have read up over the years on prostate cancer and its treatment, and although I have kept myself well informed, I am a complete beginner when it comes to the emotional and psychological impact of getting a diagnosis. When I sat down with the oncology nurse three weeks ago, I was quite composed and asked lots of questions, but then getting home to my wife, blubbed my heart out. In many ways, she has taken it harder than I have.

Since diagnosis, I have struggled with anxiety, depression and sadness. However, I am starting to get the support I need and have been to my local Macmillan centre and connected with a local cancer support group, which has been great. Everyone tells me the worst time is between diagnosis and the start of treatment.
Joining this group is also part of that process of reaching out and sharing experiences, as that seems to help a lot.

Some of the stories I read can be quite heart breaking, but I am grateful that I have had a long time to process the idea that I would one day get this diagnosis, and that early intervention will give me the best possible outcome. Now that I have started to tell people, I'm hearing many stories about uncles and dads and friends who had it. I am also heartened by the many positive stories on this forum.

Millibob 1 month ago

Hello Pura Vida

So a user name from Costa Rica meaning "Pure Life" - there's got to be a story there!!

Oh and a warm welcome to the Macmillan online community - I see you have been stalking us for a few weeks - welcome on board!!

You are indeed correct, the hardest part of the Prostate Cancer journey is waiting for the diagnosis and treatment plan to start - once you have a plan and you know just where you are going life settles down to the "New Normal". You will find the cancer is a "couples cancer" and I have found my wife to be my number 1 supporter and I tell her everything.

A few ideas which may help:

" I see you have joined a local cancer support group, do you have a "Maggie's" centre near you? This is a cancer support charity where you can just pop in, have a brew and go over your problems - no appointment required.

* Anxiety UK is a great source of help for anxiety - contact details 0344 477 5774 or www.anxietyuk.org.uk

* We do offer free BUPA counselling to anyone with cancer and here's the link.https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

* Our support line on 0808 808 00 00 (8am to 8pm 7 days) offers some great support ideas from some fantastic support staff - feel free to give them a ring and have a chat.

If I can do anything for you or you have any questions feel free to post them - however trivial - we are all happy to answer questions as we will have someone who's "been there - done that".

Best wishes - Brian.

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David2017 1 month ago

Hi Pura Vida , sorry you have joined our club as a full member. You are correct that the start is by far the worst time. I found once I had the diagnosis, I could start to process the whole thing, but I did have a few months just on HT before having chemo, where I could think things through. I noticed that you mentioned you got back home and told your wife, which implied you had been on your own to the appointment. I would strongly suggest you take someone else with you as 4 ears are better than 2. My wife and I would compare notes when we got home and it was surprising what different things we each came away with. While you are waiting, try and keep fit, it will help you in the long run. I do hope you get your results soon. Best wishes, David

Pura Vida 1 month ago in reply to Millibob

Thank you for the welcome Brian.

Well spotted. I used to live in Costa Rica. I married into a Costa Rican family and hope to return there one day permanently. My first PSA test was there!

Thanks for the advice and links.
Stewart

Pura Vida 1 month ago in reply to David2017

Hi David,

Thanks for your comments.
I will be going with my wife to the next appointment. I went on my own to the last one, because I suspected it would be bad news and I wanted to break it to her myself in my own way. English is not her first language; I was afraid she might not fully comprehend at the appointment and overthink things. I think that was probably a mistake, and the overthinking happened afterwards as the result of not going to that appointment with me!

I have to say that my local Macmillan Centre and also the local CS group have been 100% welcoming and emphasising that support is for family not just those with a diagnosis. I had never thought of it being a 'couples cancer'.

Best wishes,
Stewart

Millibob 1 month ago in reply to Pura Vida

Good Afternoon Stewart (Pura Vida)

Ah, one of my children did her university field trip there - it cost me an arm and a leg to get her there and back and all I got was some decent coffee!! It's somewhere i have always fancied going to.

To help us help you can I ask you complete your profile and add your diagnosis when received, (You can read mine by clicking on my name or avatar). To do this just click on the chair - top right on your home page, then "Profile" and then "Edit", once you have written something click on save.