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Is doing nothing an option ?

User
Posted 26 Oct 2022 at 09:26

I recently wrote about my 'issue' under the title 'A Repeat Performance'.

Basically I went through the diagnostic sequence of MRI / CT / Biopsy in mid 2020 following a PSA of 11.0 - no cancer was found. I am now 75 & have been taking Finasteride & Tamsulosin, for several years. My MRI in 2020 reported an enlarged prostate - 96 cc - & 'patchy, chronic inflammation'. My earlier problems of 'urgency / hesitation' are reasonably well controlled & whilst I usually 'get up' a couple of times at night that isn't a problem - any increase in frequency seems to be dictated more by my mental state.

My PSA has started to climb again being 19.2 at my last test & I am back in the 'diagnostic loop'. I have an appointment to review my MRI result tomorrow.  I find the routine of having a 3 monthly PSA mentally challenging - as soon as I get one result I am thinking about the next test. If given the choice I would prefer to have a 'good' 10 years or so, without worrying about the possibility of prostate cancer, rather than a longer period, when I may know that any cancer has been managed, that sees my physical & mental ability perhaps becoming increasingly limited & concludes with the possibility of my needing 'care'.

I don't wish to come over as being 'gloomy' - which I am definitely not - but 'quality of life' is far more important than longevity. I would welcome any thoughts as to my 'parking' the ongoing threat of prostate cancer & just getting on with my life. Thanks

User
Posted 26 Oct 2022 at 19:21

Hi,  A prostate of 96cc is very large and should generate a higher psa than normal.   There is a formula for size v psa somewhere but I can't find it.

Finasteride can cause depression it says on the NHS website.

It's easy to understand your concern if your psa is fluctuating although they haven't yet found anything cancerous.   Tomorrow you'll learn if it's more inflamed or something else.

If it's inflamed it's a trade off between risk of cancer and the risk you're willing to take.   It sounds like you're worrying about it and unless you can reduce your worrying you're going to keep having blood tests although you might increase the time between them.

One option is to pursue all options on treatment for inflammation and perhaps the doctor can advise more options,  even if it's not on the NHS.   I'm sorry I don't know the options and you might have already done it.

All the best, Peter

Edited by member 26 Oct 2022 at 22:18  | Reason: Not specified

User
Posted 27 Oct 2022 at 16:22
Peter - Thanks for your response.

I have just got home after meeting with a consultant. My prostate has 'grown' to 105cc, which I am told isn't a particular problem, but the area of 'concern' last time is now regarded as of more significance with this being joined by a second requiring further investigation.

A repeat biopsy I am afraid - oh dear !

At the moment my inclination is to 'opt out' & move more towards a watchful waiting regime if no cancer is found

User
Posted 30 Oct 2022 at 15:52

Hi Grafton,  Your prostate is about 2.25inches diameter when it should be around 1.5inches at your age, assuming it's round.     The MRI will guide it although it's a bigger area to search overall.

I'm not exactly sure what watch and wait is but I'd at least want psa tests.  You know your prostate size to psa and it's rate of change.  If it suddenly changes at a faster rate it's better to know.

User
Posted 30 Oct 2022 at 16:05
One thing to be aware of is that Finasteride “masks” PSA. If you’re taking finasteride, your measured PSA level will be approximately half its true value, so a measured PSA of 19 equates to an actual PSA of 38, which is pretty high. If I were in your situation I’d want that investigating.

Best wishes,

Chris

User
Posted 30 Oct 2022 at 16:28
Thanks again Peter

I am trying to clarify in my own mind whether 'opting out' of an investigation into the possibility of prostate cancer, at this point, is a valid alternative given that I am 75.

I have read that :

(i) Most localised prostate cancers are slow growing & may not need treatment or shorten a 'man's life.

(ii) Both Hormone Therapy & Radiotherapy come with their own risks & side effect, some of which may be significant.

(iii) That if prostate cancer does materialise it can be controlled, but not cured, using Hormone Therapy

The issue, for me, is really about how long, typically, does prostate cancer take to develop from the point at which I am perhaps now, to the time when it becomes potentially life changing. There was no sign of cancer in my 2020 biopsy - there may, or may not be, now. I am of the view that something is likely to 'get me' in the next 10 to 15 years & at this point I don't think that I would wish to go on longer. The last years of my parents lives were definitely not what they would have wished for & I hope never to find myself in their position.

I am not all 'gloomy' as a person but I definitely think too much !

Thanks again

User
Posted 30 Oct 2022 at 17:10
My father-in-law was diagnosed at age 79 with a localised and therefore treatable prostate cancer. He declined any treatment because he had a much younger wife and was concerned about the impact of treatment on his sex life. He only lived for 4 years - mainly because his active surveillance wasn't managed properly. Devastating for us who loved him but absolutely the right decision for him - He lived his best life and spent a month camping in France and Spain right before he died
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Oct 2022 at 18:22

I don't think your all gloomy, and I don't think you are thinking too much. You are thinking about the right amount for the situation you are in.

You have a reasonable idea of the timescales to expect from the rest of your life, and the speed cancer can progress.

I think the problem you have at the moment is, you haven't got a firm diagnosis, and based on past experience it will be a number of years before you have one.

Do you really want to be on the treadmill of tests looking for an illusive cancer, which will certainly be found one day if they keep looking hard enough (nearly all men your age have cancer, or will get it soon). Once it is found it may lie dormant for years, but they/you will probably want to treat it straight away.

I can give an example from my own experience with a much less serious disease, which I chose to ignore. I have one copy of the gene for hemochromatosis, in theory I should be fine but I have high iron (serum ferritin diagnosed at 450 normal range 30-300) for two years the hospital bled me every six months, the figure bobbed up and down. Then they failed to call me in, probably lost my records (another story). I ignored the problem for ten years, then with a PSA test I asked to check serum ferritin, it was high 500. GP wrote to hospital, who didn't respond, a year later I asked for another test it was 330, slightly above normal. I could have spent the last decade having pointless treatment if it wasn't for the good fortune of an incompetent hospital.

Rather than hedge my advice with caveats, I'll just tell you not to follow the advice of an idiot on the internet and then tell you what to do.

Ignore the disease until you are 80, maybe have annual PSA tests, but ignore the result if it is less than 30 (it's a big prostate, otherwise I'd have said 20). If the PSA gets above 30 or you get to 80 yo decide what to do then. Hopefully you'll get five worry free years, possibly then another five or ten. At anytime in between you might die, but that's the penalty of living a long life.

 

 

Dave

User
Posted 30 Oct 2022 at 18:26
Chris

Thanks for your comment.

Looking at your profile your programme of HT & RT had a duration approaching 2 years from the date of your diagnosis. I would be interested in learning about your experience of side affects & how they impacted upon your life. You are significantly younger than myself and a similar programme would take me not far short of 78. I am not excluding the thought of any treatment that may be necessary at this point - but I am definitely hesitant & inclined towards an alternative if there is something that would hopefully give me a good quality of life for say 10 years.

Stay safe.

User
Posted 30 Oct 2022 at 18:39

Lyn

Thanks for your comment. I suppose that this is an unlikely forum to raise the issue of foregoing the chance of treatment should it be necessary but is reassuring to learn of your, what must have been very sad, experience.

In another sense I feel a little guilty - your father-in-law must have led his life to the full  - I find it so easy to use age as an excuse for not doing something that I once enjoyed but now find a little more challenging. I must try & do better.

User
Posted 30 Oct 2022 at 19:56

This is exactly the forum for discussing your thoughts. Active surveillance is not 'doing nothing' - managed properly it is a proactive choice to manage your cancer without radical treatment. There are a number of members here on AS or who have been on AS in the past. The trick is to have a good urologist and regular monitoring so that if something changed dramatically, you could change your mind and have treatment in the future 

In contrast to my father-in-law, my dad got prostate cancer 25 years ago and had the op but had a recurrence a few years ago and, so far, is avoiding having any more treatment. So you are not at all barmy. 

Edited by member 30 Oct 2022 at 20:00  | Reason: Not specified

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

User
Posted 30 Oct 2022 at 20:04

Grafton, on diagnosis at 62 my consultant said if we do nothing you will still be around in 10-15 years, that advice made me consider doing nothing even though I had cancer. 

I worked with a guy who had a fluctuating PSA that went over a 100 at times a trus and two guided template biopsies found nothing.

Good luck with your decision.

Thanks Chris 

User
Posted 30 Oct 2022 at 23:38

Hi Grafton,

I have a feeling you have inflammation.  However I would take the biopsy and then continue with psa testing perhaps twice a year.

If there is something found, its size, location and Gleason will guide you.  A prostate your size could keep the lesion encased for some time.

There are other treatments that focus on the lesion like HIFU and there is Brachytherapy.  You might get away with a very short or no hormone treatment as well.

Also you can consider your psa rate of change and decide to have hormones only at some stage, although that's a risk and likely a waste if you can get a cure.

It's also interesting about the drug masking the psa.  There is a thread about that on here.   My last psa surprisingly went down and I wondered if something the GP prescribed could have had an effect. Although it was only a skin cream on a small area, quite toxic though.

There are a couple of threads on here that come up if you search Google using this,

'does tamsulosin affect psa'

One is 2016 and the other 2019. Lyn has written a lot on both.  If you're interested and have difficulty I'll paste the links.

Regards

Peter

 

User
Posted 31 Oct 2022 at 09:58

Originally Posted by: Online Community Member
Chris

Thanks for your comment.

Looking at your profile your programme of HT & RT had a duration approaching 2 years from the date of your diagnosis. I would be interested in learning about your experience of side affects & how they impacted upon your life. You are significantly younger than myself and a similar programme would take me not far short of 78. I am not excluding the thought of any treatment that may be necessary at this point - but I am definitely hesitant & inclined towards an alternative if there is something that would hopefully give me a good quality of life for say 10 years.

Stay safe.

I'm not suggesting that you do (or don't) get treatment; just that an "unmasked" PSA that's probably in the high 30s warrants proper investigation so you'll know where you stand and can make an informed decision. If your oncologist says "you have cancer but you'll probably live for another 15 years without treatment" then that would take you to 90 and statistically the odds are that something else will get you first. If, on the other hand, a biopsy shows a more aggressive cancer there would be a much stronger incentive to get treatment. 

Personally I didn't find my two years of treatment to be too bad. For most of it, when I was just on the HT, I felt fine. Tiredness and some weight gain were the main side-effects. For the first few weeks of HT I felt very "woolly headed" and couldn't think clearly, but that wore off after a couple of months. I had RT over a six week period. RT side-effects are cumulative. First 3-4 weeks were fine, but the last couple of weeks and the few weeks after we're mildly unpleasant with urinary and bowel issues. Urinary issues cleared up within a few weeks; bowels took longer - perhaps 3 months to get back to some form of stability and a year to return to normality. It didn't affect my life; I just took an Imodium tablet before I went out anywhere.

Hope that's of some help,

Chris

 

User
Posted 01 Nov 2022 at 13:35
Thanks to all of you who have responded to my 'post' - you have all been reassuring & supportive which has been really helpful in guiding me towards the next step.

I think that I have been looking at prostate cancer far too simplistically & focused on the fact that 'most localised prostate cancer is slow growing & may not need treatment or shorten a man's life'. I thought that at 75 that should be OK for me - but now realise that life isn't necessarily that straightforward. The possibility of a metastatic cancer has never entered my head.

I have talked through 'where I am' with our GP this morning - I am fortunate that he has looked after my wife & I for the last 32 years & is well aware of my 'uncertainty' - 'I tend to think too much', as he says ! I plan to go ahead with the biopsy that has been recommended together, obviously, with any treatment that is necessary. I will look for hopefully a more relaxed level of surveillance if no cancer is found & try, no doubt with great difficulty, to put the possibility of prostate cancer a little further towards the back of my mind.

I will keep you posted. Good luck to everyone on their own journey.

User
Posted 01 Nov 2022 at 16:35
Good plan. A biopsy isn’t many people’s idea of a fun way to spend a day, but at least once you’ve had it you’ll know what the situation is. You probably already know this, but about three quarters of men your age do have prostate cancer, but that doesn’t mean that radical treatment will be necessary. Please do let us know the outcome when you get your results!

Best wishes,

Chris

 
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