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Decision to make considering other health issues

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User

Posted 28 Mar 2023 at 16:06

Hi All

So I had pneumonia in Jan 2023 and they took lots of blood tests and discovered a PSA of 11.55 - GP referred me to urologist. Had consultations and then MRI which revealed areas of concern; PIRAD 4 lesions bilaterally and PIRADS 3 in transition zone - then had biopsy on 13th March and results yesterday. Result is a Gleason Grade G3+4 and it seems % of cancer cells from the samples taken ranges from 8% to 50%. Consultant said a Gleason total score of 7 is "intermediate" so not to panic.

Bit of a shock really - thought it was a bit of a "storm in a tea cup" at first, maybe a fluke of the PSA result back in Jan, but obviously not. Im getting more worried about it all today than when I had the results yesterday. I guess its just sinking in...

Consultant is steering me towards radical prostatectomy, mainly because I also have Chronic Kidney Disease Stage 4 (dialysis expected in 2024 considering rapid decline of kidney function, and kidney transplant hopefully asap thereafter) - apparently they won't consider any transplant if there is a risk of cancer in my prostate; so I need to pick a treatment plan then has high chance of working within the next 2 years in case im lucky enough to get a kidney transplant.

Writing this is helping me to realise that its probably the best option but im curious to hear other views to be honest - the side effects of RP seem horrendous and would potentially ruin my self esteem (as if I had any) as a man. Other options I have been given are radiotherapy and seed brachytherapy...... but both of these seem to have risks of not getting rid of all the cancer cells, is it right?

Thank you in advance for some thoughts......

User

Posted 28 Mar 2023 at 21:42

I meant to say Nig14,

I posted a similar thread earlier today asking if a RP was possible with other health conditions. I hope that, if I do decide to go the RP route, I meet the required fitness to allow the surgery to be performed.
Something else that I am concerned about, add it to the list :)

Take care, Greg.

User

Posted 30 Mar 2023 at 09:10

Originally Posted by: Online Community Member

But then again, do I want to jeopardise the chances of a new kidney in 2 years or so? maybe its a risk worth taking, I dont know and need more time to think.

Nig14, I think your most important conversation is going to be with the kidney specialist - what would they consider to be 'cancer-free'? If you opted for RT / HT, you wouldn't really know whether you are cancer-free until 2 - 5 years after the treatment finished - if you had 2 years of HT, you would be having a conversation with the kidney specialist before the HT has worn off so how would they decide whether the op was feasible?

Other things you need to know are:

- with some cores at 50% cancerous, how close to the edge is it and does the urologist think that nerve-sparing is possible?

- from the oncologist, of external RT / external RT with brachy boost / brachytherapy, which would they recommend? And how long would they recommend you have HT? Would your decline in kidney function impact on the effectiveness of / side effects from any form of RT?

I don't think you can make this decision until you have seen the urologist, oncologist and kidney specialist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 28 Mar 2023 at 20:05

Wow, some complicated issues. That kidney issue does sound quite scary and I can see you want to have everything done to allow the best treatment for that.

And I am curious why lab tests for pneumonia might include PSA, but what do I know?

With no evidence of cancer outside the prostate, I would have thought radiotherapy and brachytherapy are as likely to treat the cancer successfully as surgery (though not everyone turns out to be suitable for brachytherapy). The only thing is actually being able to measure the success, radiotherapy is typically combined with hormone therapy and PSA measurements aren't definitive until normal testosterone has returned which can easily take 9 months.

User

Posted 28 Mar 2023 at 20:12

Hi Nig14,

Sorry that you find yourself in this situation. There are people on this site much better informed than I am, and hopefully some of them will see your post and offer their views.

I was diagnosed in May of 2022 and opted for Radical Prostatectomy, because I hoped that my prostate cancer would be completely excised and I would recover continence and erectile functioning in due course. I thought that radiotherapy was likely to lead to longer-term erectile problems which would not improve over time. And I was only offered radiotherapy with Hormone Therapy, which I definitely did not want. (They didn't offer me Brachytherapy). So, in short, I took what I hoped would be short-term pain for longer-term gain.

So far, ( 9 months later) I'm still incontinent and have no erectile functioning (apart from that provided by a vacuum pump or Alprostadil injections). I'm still hopeful that it might yet improve. Apparently, it can take up to 2 years to recover sexual functioning. The incontinence is slowly improving with lots of lower abdominal ('Kegel') exercises.

In my case, after they had removed the prostate, they were able to tell me that it had pushed through the prostate capsule, so I was upgraded from T2 to T3a. I have since been informed that there is a likelihood of recurrence in the 'prostate bed' at some future point, so even with a prostatectomy, there is no guarantee that they will be able to remove 'all' of the cancer cells, as you might be expecting. (However, my PSA is currently undetectable, so further treatment is not on the horizon yet).

The Kidney Transplant that you are facing seems more pressing, as any possible prostate cancer recurrence (if it happens at all) may be many years away. If the Kidney Specialist is happy for you to have any of the treatments offered, then in a sense, it's a more difficult decision for you because you're not being steered towards any particular treatment. Read as much as you can about all of the treatments on offer, but in the end it may come down to 'which of the side effects do I wish to avoid the most'?

Good luck to you.

JedSee.

User

Posted 28 Mar 2023 at 21:32

Hi Nig14

I am in a similar boat as you, diagnosed last week with locally advanced and Gleason of 3+3 T3 N0.
Just had my full body bone scan yesterday and hoping for next appointment with consultant next week to discuss which treatment to take.
I have been massively confused by having to make a choice of treatment, though I was only offered two, RP or RT.

I am only 54 so they said that as I am young (certainly don’t feel it I have to say!) then surgery could be the way to go initially as I can always have salvage RT afterwards if/when it returns. As it has broken out of the prostate I’m guessing there may be a higher chance of it returning.
I habe also been very worried about the after effects of surgery but over just the last couple of days my mind has slowly come to accept that the choice is black and white. No grey areas.
The first priority is to obviously get rid of the cancer, whichever way I end up going with, and then I can deal with the after effects as time goes by.
In my first post someone kindly suggested I read the book Saving Your Sex Life by John Mulhall M.D.

I bought it on Kindle and read it yesterday and today. It is an excellent resource and explains things so clearly. I do believe it is helping me make a choice and has definitely given me a long list of questions to ask the consultant in my next appointment.

I am also dealing with some other chronic health conditions, the worst of which is an autoimmune inflammatory arthritis condition called psoriatic arthritis. PsA for short! … must have been a sign! :)

I have been receiving weekly biological injections to suppress my immune system functions as it is attacking my joints (and organs) I’ve had this for 9 years now and been on the injections for 8 of those. They changed my life and gave me some independence and movement back. I understand that the condition is not as serious as your kidney disease but I have been off my injection for 4 weeks now and already I can feel the arthritis activity increasing across the whole of my body already so I am, like you, considering a RP as the quickest way to be able to get back to managing my arthritis.

I of course don’t have the insight of having been through the RP as many people here have but I hope I can offer you some morale in saying you’re not alone in dealing with the stress of this diagnosis and a current chronic health condition.
The book by John Mulhall is definitely worth a read and should give you plenty of questions to take in to your next appointment.
I hope that helps in some way at least.

Take care

Greg.

User

Posted 28 Mar 2023 at 21:42

I meant to say Nig14,

Take care, Greg.

User

Posted 30 Mar 2023 at 07:52

Thank you so much for your reply - Im beginning to feel Im not alone on this after all. Struggling a bit with emotions tbh and can't even talk about it much let alone make a decision. In any event, hope it works out somehow for both of us - it's just a complete shock and seems so unfair with everything else...... thank you again for taking the time to reply and good luck.

Nigel

User

Posted 30 Mar 2023 at 08:04

Thank you JedSee, J-B and Greg for your replies on this - I have a lot reading to do to work it out. Yesterday I started leaning towards radiotherapy and hormone treatment as I read success rate for localised cancer contained in prostate is like 98% and as someone said the ED etc can be almost back to normal in 9 months; at 57 I still would like a sex life of some kind tbh - going for the RP route seems to have a higher risk of ruining it, at least for a longer time - unless anyone has good experience on this?

But then again, do I want to jeopardise the chances of a new kidney in 2 years or so? maybe its a risk worth taking, I dont know and need more time to think.

My mind is mush atm - prob need to see a mental health specialist now too. :(

User

Posted 30 Mar 2023 at 08:28

It’s difficult isn’t it Nig. Like I said, I’m right there at the same place as you are now.

From what I’ve read we should never decide our choice of treatment based on what we think will be our best chance of best sexual performance in the future.
As I understand it, RP will give ED issues immediately but RT has been reported as giving issues 3-5 years down the line so essentially the same problems just delayed a little.

It would be great to hear people’s experiences of ED after RT, once they are several years past their treatment, to see if real world experiences match up with the research data.

User

Posted 30 Mar 2023 at 08:33

Yes, you're right. My head is mush. Will wait for others to comment on experiences further down the line then.

thank you

User

Posted 30 Mar 2023 at 08:45

One of the many questions I’ve gathered to ask the consultant at my next appointment is:

What treatment does he believe will give the best results in beating my particular cancer (based on stage/position/spread etc)?

I’m going to ask him to forget about only being able to offer me RP or RT at my local hospital, out of all the treatments available, in his experience, what does he think will give me the best chance of being cancer free. Then if he suggests a treatment that is not offered by my local hospital I can look to going further afield or investigate private treatment.
The aim for me is to be cancer free, everything else (like side effects) I will have to deal with as they come.

User

Posted 30 Mar 2023 at 09:10

Originally Posted by: Online Community Member

But then again, do I want to jeopardise the chances of a new kidney in 2 years or so? maybe its a risk worth taking, I dont know and need more time to think.

Other things you need to know are:

- with some cores at 50% cancerous, how close to the edge is it and does the urologist think that nerve-sparing is possible?

I don't think you can make this decision until you have seen the urologist, oncologist and kidney specialist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Mar 2023 at 22:12

LynEyre gives good advice, as she very often does.

The problem with specialists is that ... they specialise. Urologists focus on surgery, oncologists on radio/chemo/hormone therapy, and the kidney specialist on something that for you is a crucial part of the equation. You are in the middle and need one approach.

The way I see it (this isn't medical advice) is that surgery could be undertaken fairly quickly with the success in terms of PSA levels known a few months after that. There would be something to work on for the kidney specialist thinking of treatment and possible transplant surgery - with the question being how soon they are prepared to consider a second major surgical procedure (don't under-estimate how those set you back).

With radiotherapy, the best that seems to be realistic under current protocols might be 6 months hormone therapy to cover the radio treatment, and 9 months before the PSA success can be reliably estimated. But you would need to find out from the oncologist whether that relatively accelerated treatment would be workable in your case. Much longer and there would be anxieties about having the kidney problem dealt with.

And that is without worrying about the side effects, which can significantly change your quality of life. It isn't an easy decision, good luck.

User

Posted 31 Mar 2023 at 08:47

Thank you. I'm expecting a call from the kidney consultant to discuss timings further but I fear that the best option for a more likely clean result is removal. As you say, I will have to deal with the side effects / fall out from that best I can; probably whilst on dialysis.

Thanks again all for your help and best of luck

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