One year post diagnosis.

Around a year ago I was diagnosed with prostate cancer, aged 53.   Immediately of course I looked here for information and began to educate myself on this disease.  After all the usual diagnostics tests - examination, biopsies, scans etc I was told I had advanced prostate cancer.  Staging - T3b, N1 and M1b and Gleason 9 (5 and 4). All cores were positive.

My care was basically moved to oncology in July 2022.

The treatment path was I think the standard now for someone in my situation - double hormones, steroids and regular checks of PSA with a view towards RT when PSA came under control.  I had a moderate response to the hormones for 5 months with my PSA falling to a nadir of 4 however in Nov 2022 a test showed no fall or rise and then the next test showed a rise.  In January 2023 the PSA level had risen sharply and thus I was considered to  be a case of castration  resistant Prostate cancer.  Abiraterone was stopped and I moved to what has been described as, palliative chemotherapy, 10 sessions planned.  Unfortunately the PSA level still rises and at last reading was 538.  I am waiting on a set of scans - bone, ct and mri to determine the next steps from here.

While my progress and treatment is interesting  what I have learned in the last year about cancer and its impact is more interesting to me.  Initially I think the shock takes you through the first few months and there is little processing of what is going on.  Only after a year do I feel I can really process the “journey” I have been on.  I would say I have learned a number of things which may or not be helpful to other people.

1. Homogeneity -  When we talk about cancer, and of course prostate cancer in this case, we are not talking about a homogenous disease.  there are so many different stages, levels and pathways that to talk cancer and try and group in a single group is literally impossible.  This is something I have took a good while to grasp! I found prostate cancer to be a difficult diagnosis for this very reason as i think it is well known  that it is a slow growing disease and that men will die it with it rather than because of it.  I am pleased to say that this is true in most cases. It is a curable disease. And I am so grateful for the many men who are cured and monitored who live long and healthy life’s.   However if you are unlucky and have a more aggressive rapid type of PCa be prepared for people to misunderstand the seriousness of your diagnosis.  It is draining at times and can cause some problems with friends, family, work, life insurance and pensions (not bloody travel insurance though).  I do have a wonderful MDT however and they have supported me through these conversations 100% and have now settled this with everyone who needs to know. Of course this also means all these learning points are mine, they may be meaningless for you! 
2. Waiting -  One of the biggest and most unexpected learnings from this is the joy of waiting.  This year has felt like one massive process of waiting on - the next blood test, the next scan, the next appointment etc etc etc.  This of course is the nature of the disease. However I have started to realise that while you are waiting, the clock is ticking.  So it is crucially important to be living while waiting otherwise time just ticks away while you wait on the next cancer related thing.  Life needs to be lived.
3. Family and friends - I am not alone with this however that means that while I am supported they are impacted as hard as I am.  I have very strong and close family and friends and even in them I have seen them crack and bend under the strain.  In many ways it’s easier for me as I have the lived experience. They have to rely on my reports as being honest and not just being to be protective of them.  I do try and be as honest as I can, I try and use humour to soften the blows at times. I can safely say I don’t think I would have been able to do this this year without the support of my closest family and friend but I worry about the impact on them!
4. Acceptance but not lying down - I was really bad for just trying to keep doing what i did despite the diagnosis or any treatments.  I was told by those close to me to slow down, accept I needed some rest and also that of course at times I would have pain or side effects.  I felt at times that by accepting this I would be welcoming the disease and it was the beginning of the end.  In fact acceptance has allowed me to recharge my batteries when I need to so that life can be lived when it needs to.
5. There is not a lot that really matters -  This might be one of those rather philosophical things that we all really know but that only a life limiting illness can really teach us.  But it is true, the things I stressed about, worried about or gave mental energy to before cancer phone call compared to post cancer phone call are a world apart.  Of course they matter but when all is said and done they don’t really matter.
6. Doom scrolling - One thing I have realised is that there is little value in google searching “prognosis following advanced cancer diagnosis”.  It doesn’t take you anywhere good! It is however likely to happen so with that in mind see point number 1!
7. New friends and opportunites - It seems weird to say that this diagnosis brings positives.  But it does.  In the last year I have made new friends who are now quite close to me.  I would have never met them but for this diagnosis.  I have also had a number of new opportunities and experiences that would only have happened as a result of this diagnosis.  I have also had to stop working etc so that has opened up opportunities for other things to happen that, at this age, would have never happened.  So perhaps it’s a good learning point to end on.  There are positives from all of this, they can be hard to see sometimes but they are there and will come.

So I am a year in and of course hope, pray and of course expect to be back here next year with a report on year 2.  As it stands I am waiting on some genetic testing which may open up some treatments and as I wrote earlier I am waiting on scans to determine the path ahead with chemo.  (See learning point 2 lol)

I have 2 weekends coming up that are full of friends and family socialising and then a trip away to the outer Hebrides to recharge in early May. (Learning 3 and 4)

I hope you are all well.  For those on a curative pathway please stay cancer free, I send all my positivity.  For those not let’s hang on in for as long as possible.  And for those just joining this club, don’t panic. Stay informed and keep talking to those closest to you.  You will prevail.

So that is my learning after a year of advanced PCa, feel free to add yours.  Thanks in advance for taking the time to read and I do wish you all well.

Best wishes

Michael

Edited by member 17 Apr 2023 at 08:17  | Reason: Not specified

Hey Michael,

Just thought id drop in again in what I think, is easily one of the greatest posts to have been written on here in my 2 year journey with this thing.

I hope you are more than well my man.

Best,

Jamie.

So sorry to hear about your husband GMKY…good luck to him and you.  All the support in the world from me 

Michael x x 

Hi Jamie, thank you so much for the feedback and hope you are doing well my friend.  I can’t wait for a stroll along Luskentyre beach.  I have been before and it is, in my opinion, surely one of the best beaches in the world. This is with the distinct advantage that there is no one, or very few people on it lol! 

Take care, stay well and stay strong 

Cheers 

Michael 

Thank you so much for taking the time to reply Melissa and i have everything crossed that your husbands PSA plays ball and the drugs keep working.  I am sure they will for now.  Sorry I hope I didn’t mean to upset you or anyone.  I am hopeful that things will turn around for me and that there is a treatment path ahead.  I like to stay confident this will be the case. We all have to have that wee bit of hope I think :) 

Look after you, you are far from a Fraud .  The impact on family and friends is so high and sometimes you are the ones who are forgotten in all of this. 

Take care 

Best wishes to you both 

Michael x x x x

Hi Michael,

Your post whilst heartbreaking, is very inspiring indeed. You certainly brought tears to my eyes. Its so easy to gloss over the impact of this, but in your own way that hit so many levels of life.

My demon is not as advanced, but 7 months AS on from diagnosis, it does eat away psychologically. It feels like I am walking round with a volcano awaiting to erupt.

My first instinct is to shield and protect those around me from this, but when serious health concerns inevitably lead to re-assessment of life and longevity, your loved ones do notice those subtle signs of change. Sure LPAs and Wills are sharp edged necessities, but the little things like me writing a burgeoning novel (sort of secretly late at night) on how to maintain the house and take over all the duties we take for granted. My pathetic not so convincing efforts to introduce family members to what I might do or contacts I have. The changing of the guard almost in case the worst happens. 

Above all we must make the most of life in the best way possible, because it does go on. 

I truly wish you and your family the best for the years ahead. Take care, Mark.