Changing my mind about treating my prostate cancer

User

Posted 18 Nov 2024 at 01:04

I have prostate cancer with a Gleeson score of 3 + 4, no features identified on MRI and no sign of any spread outside the body. Age is 67 and fit for my age. No other problems except for anxiety and depression.
When I was told I have cancer (after a perineal biopsy) my gut reaction was to get rid of it.

I live in New Zealand and our health system is government funded. There are private options available, but I cannot afford those.

The problem is my score means I am not a high priority. I was diagnosed in August but waiting for scan tests then getting bumped down the waiting list because more urgent cases turn up means I still do not have a definite date for surgery.

These delays imply that perhaps my personal perception of the urgency was too high. The waiting is also hard because I have general anxiety and depression. Not interested in radiology because of the long terms effects of bladder and bowel irritability.

Reading some of the on-line articles about low and intermediate risk mortality rates has made me question my decision and I have now requested I be taken off the waiting list. They might suggest watchful waiting, but is there any point in going through all this drama (and surgical side effects) when my 15 and 20 life expectancy is not going to be markedly affected?

User

Posted 18 Nov 2024 at 07:44

Hello mate.

Sad to see you've had to join us but welcome to the forum.

Presumably as your disease is prostate confined, you are T2? Do you have any other MRI details such as the number of tumours and where they are within the gland and what is you PSA?

I'm sorry to hear the you are also suffering from anxiety and depression. Unfortunately, it is likely that the cancer will exacerbate these conditions, making decisions that more difficult.

Have you been given any approximation of when it would be possible to start any radical prostate treatment.

If your PSA level is relatively low and the cancer is a single tumour, which is safely contained within the gland. I'd opt for active surveillance. However it's not an ideal treatment plan for those suffering with anxiety issues.

You are correct that low grade and some intermediate disease can be be successfully monitored and may never require any medical treatment. If you decide on active surveillance please ensure that you are actively monitored and have all the regular blood tests and follow up MRIs.

Best of luck mate.

User

Posted 18 Nov 2024 at 08:58

Hi,

I remember when I was diagnosed over five years ago, I didn't want to take any action because I didn't like the thought of the side effects. At the time I wanted active surveillance but this was not on the table due to my 4+3=7.

Adrian makes an important point about active surveillance, that you are monitored regularly. I would add that anxiety will always be there, as all of us on this site experience every time we wait for our latest PSA test results.

I'm now over five years post surgery and my latest PSA result is <0.010 undetectable. It has been one hell of a rollercoaster ride but my life expectancy is so much better now.

You'll never be alone on this site.

Good luck.

Kev.

Edited by member 18 Nov 2024 at 09:21 | Reason: Typo

User

Posted 18 Nov 2024 at 09:33

I think before you make any decisions it would be good to know the size of your tumours, where they are located and the percentage of Gleason pattern 4. These are all factors that may make active surveillance a suitable option. I would however add a word of caution as my husband aged 65 was initially diagnosed with a single lesion Gleason 3:4 but following his surgery a further three small lesions were discovered changing his staging from T2A to T2C and one small tumour of .14cc was a 4:3 although his overall score remained 3:4. 25% pattern 4. The other two lesions were a 3:3 and 3:4 with 5% pattern 4.
All these factors determine whether AS is appropriate. My major concern is the number of men on this site who have their Gleason score, stage upgraded following surgery and therefore the certainty you can enjoy that the extent of your disease has been fully assessed purely by MPMRI and biopsy and thereby the confidence to follow the AS programme. Everybody however is different as is their approach to risk. Good luck in whatever decision you take.

User

Posted 18 Nov 2024 at 10:58

Once you are diagnosed with prostate cancer anxiety may become your constant companion. At present, although you know your Gleason score, it is an estimate of the state of you tumour/s. One only finds out the actual score after the removal of the gland and examined. One way to reduce you anxiety may be, if you can afford it, pay for an MRI investigation which would give you a clearer picture of your cancer, for example its proximity to the boundary of the prostate gland etc. I was 71 when diagnose, 13 years ago, with Gleason score 3+4, and 4+3 and had prostatectomy: anxiety is much less but still there. I think you can expect a favourable outcome because the cancer has been detected quite early. Good luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 18 Nov 2024 at 20:06

Originally Posted by: Online Community Member

is there any point in going through all this drama (and surgical side effects) when my 15 and 20 life expectancy is not going to be markedly affected?

Hi Kiwispirits. You're clearly agonizing over the options here but your question above is fundamental to your decision and the answer is, that your lifespan could well be markedly affected by cancer unfortunately. On top of that you really don't want to have your final years devoted to a battle against advanced prostate cancer if you can avoid it.

You've had a biopsy and an MRI scan and you were on the waiting list for a further scan [PSMA PET?]. Please, follow up on your original plan and get yourself back on the waiting list. Prostate cancer is slow growing so the fact that your treatment has been delayed a couple of times with a G7 is frustrating but this is a problem that won't go away if you ignore it.

Jules

User

Posted 18 Nov 2024 at 20:48

Kiwispirits, when you refer to a lack of change in life expectancy I assume you are referring to people going with active surveillance compared with surgery or radiotherapy. In which case you need to realise that a large proportion of those on AS will have subsequently had surgery or RT as monitoring showed changes. AS isn't a cure, it is simply a strategy for postponing the side effects associated with surgery or RT as long as possible. As you obviously recognise both those treatments have side effects you don't want to suffer unless the benefit of the procedure is worth it.

Because you are someone who knows they can suffer from anxiety, you do need to take that seriously. It is not unusual for patients to realise that the anxiety of AS impacts their quality of life too much, and that on balance it may be better to suffer side effects (which could be mild or more serious) and know you have done all that is possible.

By the way, don't be so dismissive of radiotherapy. I don't know about New Zealand, but in the UK the new generation of radiotherapy machines that have been coming on stream over the last five years target cancers much more precisely and thus should minimise the side effects you are talking about. The data available on long term side effects inevitably is tracking patients who were treated with the technology of 10 or 15 years ago.

User

Posted 18 Nov 2024 at 20:55

Definitely get yourself back on the list. I don’t know if you get choice in your surgeon, but if so it gives you time to research the possible surgeons you might have access too. The techniques, and expertise of a surgeon has a large effect on incontinence and ED issues. At 70 at my decision time I picked surgery as I too was more concerned with rectal effects from Radiation and reassured about incontinence and ED issues with my surgeon. I think in some ways at the time I was more concerned with having a catheter after the surgery. I also felt I could keep Radiation as a backup. At your age you mention your 15 to 20 years of life expectancy and whether all the drama is worth it. Once a decision is made a lot of the drama will pass. I am very happy with my decision. Surgery recovery was quick, basically two weeks but with still the warning to take it easy and not lift anything. I think you might have more drama going with surveillance since it seems you may have first settled on surgery. It will be the same for watchful waiting but things can change even with other health conditions arising and regular aging that could take the surgery option off table for you only leaving radiation. I would recommend at least keep your name on list why you consider your options. Being bumped for more urgent cases does not equate to yours being not necessary. Your surgical side effects could be minimal, discuss with your surgeon what he sees with his patients.

User

Posted 19 Nov 2024 at 18:33

Hi Kiwisirits,

I was diagnosed 18 months ago and, like you, my immediate preference was “get it out” but medical team wanted active surveillance (watchful waiting) and due to delays in getting appointments, I ended up in AS, aged 56, Gleason 3 + 3.

18 months on, with PSA having gone down from 4.4 to now 0.85 and with my second MRI showing PI-RADS 2 with no significant areas to be concerned about, I was expecting to be put into 6-monthly PSA tests rather than 3-monthly and “come back in a year” when I headed for the results meeting to discuss my second set of biopsies last week.

The MRI and the PSA levels had given false hope. More cancer was found, 5% in one core and 30% in another of 18 cores taken and whilst the person delivering the results to me was shamefully vague as to whether I am now 3 + 4 or 4 + 3, I suspect the later because the medical team’s view is now for removing prostate to be done within the next 2-3 months.

Personally, my top priority has always been to try and avoid the cancer spreading. I have seen a friend have it go to his bones and be told there’s not much else that can be done. He was in his 70s.

The decision whether to opt for removal is a personal balancing act but for me, it is no use being told “oh that’s grown far quicker than normal” or such like. It’s my life that is going to be seriously impacted and with my mother, father and brother having all suffered at the hands of cancer, I would rather do everything I can to avoid it even if it means possibility of side effects.

On that last point, there appears to be a growing correlation between the experience of the surgeon (i.e. number of times they have done and are doing the operation) and a lower percentage of patients experiencing ED and continence issues. As said above, a good reason to spend time choosing surgeon carefully, if circumstances allow.

My advice, as per others above, would be to keep as many options open as you can for yourself for as long as you can.

wishing you well

Jon

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