One year to metastatic diagnosis - life go on

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Hi All,

I choose to write this post in the New here section as this is where people need the most help. Immediately after diagnosis.

16th November 2023, Thursday. The weather was good, when there is no blowing wind in Brighton and the sun is out it is lovely to be by the seaside.

Thursdays are busy for us. We pick the grandchildren from school  (now 10 and 5), we take them to the swimming pool for swimming lessons, then we head home where there is dinner and sleepovers at ours. We love Thursdays ( exhausting but lively!) and they love sleepovers at ours as there are no rules.

That Thursday on the way to pick them up from school we had a urology appointment. The timing worked well.

We got into the meeting. A consultant urology and a Macmillan nurse. A consultant was sitting looking at his screen. He said: You know you had an MRI scan, well you have prostate cancer which spread into your bones, nodes and maybe more. It is aggressive.

I was like: hang on a minute please, you must be wrong. Jacob was under supervision for years and the last letter from April stated clearly there is no cancer just enlarged prostate.  Look at this letter please! And he said I am looking at the MRI and there is no mistake. BOOM! He said the cancer is incurable, terminal and it will never go away. He was talking and I just wanted him to swallow the words back.  I was so cold and the room became dark, the sun disappeared. he said we starting his HT treatment today and I refer him to oncology. The nurse will explain about the HT pills and injections. How long he need this treatment for? He said: until it stop working. What the prognosis? He said average 4 years.

The nurse explained the HT and I just could not follow her. I asked it in writing and she said we do not have it in writing. I asked her to write it down. I remember saying please write it clearly...

The rest of that Thursday evening was on automatic pilot. We picked up the kids, we did the usual and when they fall asleep, we fall apart. Jacob said it is my fault, I should not take the prescribed fenesteride and I of course took the guilt as the health of the family is under my umbrella. I was so cold, I never been so cold in my life.

Move forward one year and life is fabulous! We enjoy every moment and our routine hardy changed. Last Thursday we had the kids with us as it was exactly as before diagnosis. I am writng this post to tell the new people what help us:

1. This community. It is a god send. People here are kind, nonjudgmental, generous, knowledgeable, funny and you can talk about anything.

2. I forced Jacob to talk about his diagnosis. Men keep health issues under cover. I insisted that I will not coop without telling our family and friends. He agreed.

3. Trust the NHS and your oncologist. Metastatic  advanced prostate cancer is common and the NHS has a clear protocol that is working.

4. Get on with your life and your routine!

5. Keep the physical activities to combat fatigue.

6. Change your jargon. It is treatable. Drop the words terminal and incurable.

7. Immerse in nature and count your blessings.

A year after, Jacob today has his 80 swimming lengths and now he is working in the garden clearing the derbies of the storm.

We had a wonderful holiday in September and we booked for another holiday at the end of April.

Life is fabulous.

Lots of love

Dafna

  • They say there is no such thing as coincidence.

    I just had a call from my Urology Nurse and was staring into space, when your message came through.

    The MRI shows a high grade cancer, with breakout from the prostate and possible mets.  Now comes biopsy, ct scan, bone scan etc.

    Thank you for your message; It is appreciated more than you'll know.

    Love to you and very best wishes...

    Very best wishes -

    Dartmoor

  • Hello Dafna & Jacob ( 

    What a cracking post - you are both an inspiration. I am so pleased to read your journey has continued but you have both taken events into hand and life goes on as normal.

    Your post will be a boon to anyone just starting the journey. Long may Jacob's health say good and his PSA low.

    Thank you for taking the time to post - your continued well being and your contributions to the Community make great reading.

    Kind Regards and Love to you both - Brian, xx

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  • Hello  

    So sorry to read your post - we are all here for you and will give you as much help, support and encouragement on the journey ahead as we can.

    Feel free to ask anything - we have been there done that.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hi Brian

    Many thanks!

    Good to know you're there!

    Mick

    Very best wishes -

    Dartmoor

  • Amazing post Dafna. Thank you for sharing . As you know I have been on a knife edge since OH diagnosis and subsequent Oncology appointments telling us it’s not curable.  I think if we had been told this at the start , we would have had a different mind set  But we weren’t and we had put our faith in a certain person who blatantly lied massaging his ego . 

    we went away last week and it has done us good to talk, cry & laugh.  We will continue to challenge the oncologist as he doesn’t share much information  other than hand our spread sheets. 

    best wishes to you both & hugs 

    Liz & OH 

    xxx

  • You have certainly reached a fantastic group of knowledgeable people on here . Please ask away and someone will answer . 
    Hope all your tests are done quickly as the waiting is the worst as my husband was diagnosed in March. 
    take care & best wishes 

    Liz & OH 

    xx

  • Hi  

    Not just life - you are fabulous! . I haven’t heard from you for sometime and wondered how you both were. Such a positive post from you as usual. Can you believe it! 2025 coming up and you are both in such a good place. Heart eyes 

    Lxxxxx 

  • The MRI shows a high grade cancer, with breakout from the prostate and possible mets

    Hi   breakout from prostate is still curable by radiotherapy if it’s still accessible by the beams (internally and externally, as in brachytherapy boost).  Your nurse says possible Mets. Sounds like you have received a worrying call, BUT that was only based on the MRI!   So nothing confirmed - it may be that the image is PIRADS5 and suggests breakout- and so all the questions about if you have cancer and how aggressive will be answered by the next round of tests.  Please don’t worry too much : there is a good chance that you will fall within the curable category.      AW

  • Hi Alpine Wanderer

    Many thanks for taking the trouble to contact me, regarding my earlier post.

    To say that I'm confused is putting it mildly, but your message is one of hope and optimism. 

    I checked out your profile, and the details of your treatment, and take heart from your results.

    Thanks again.

    Mick

    Very best wishes -

    Dartmoor

  • Hi  - Mick, I’m glad you have studied a bit more after the devastating first call from the nurse - OMG how I remember that first call, post MRI!  I was PIRAD5, with estimated T3a breaking out of prostate, so Mrs AW and I had a pretty traumatic few days of worry and uncertainty.  My message to you was an attempt to limit that in your case.  Of course, your final diagnosis, which I suspect will probably reveal cancer (but you never know for sure until then) may be less advanced than mine.  Keep with us now that you have joined our little band of brothers (and sisters of course).    AW