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What if I dont want treatment

User
Posted 08 Sep 2019 at 22:03

Hi, 

Not the most cheerful of questions but has anyone considered not having treatment. I have recently been diagnosed with advanced prostate cancer and at the same time am going through a break up of long term - 20 year - relationship. Basically I am not sure I want to go through with having treatment. I have absolutely no one to support me and cannot face radiotherapy and\or chemotherapy on my own, aside from the logistics of getting to and from treatment. I am seeing my oncologist on 23 September and am of the mindset at the moment that I do not want treatment and am happy to just let the cancer take its course. I do not want any platitudes about time healing etc as I have had enough of then already. Is anyone else in a similar position?

Ian

User
Posted 08 Sep 2019 at 22:20
Are you sure that you will be offered radiotherapy? It is unusual to be offered curative treatment with a diagnosis of advanced prostate cancer.

The usual treatment pathway for an advanced diagnosis is hormone treatment - tablets for 4 weeks and then an injection every month or every 3 months at your GP practice. If you feel overwhelmed by the idea of faffing about with treatments, you can ask them to confirm it would be the 3 monthly injection that is prescribed.

Until recently, that would be it - chemo was reserved for men getting to the final stages of their life as a way of reducing pain and extending the time left a bit. It is only in the last 3 or 4 years that they have realised chemo can make the hormone treatment more effective if used soon after diagnosis. That doesn't mean you have to have it though; lots of men have held the chemo back in case they need it later.

If you decide not to have any treatment at all, this is called active surveillance and involves having regular PSA tests, an annual DRE (finger up the bum) and ideally an annual scan. If it looks like the cancer is getting worse, a decision can be made about whether to start treatment. However, with an advanced diagnosis, it depends where it has already spread. While it is absolutley your right to decide not to treat, you need to be realistic about the impact of that .... my father-in-law refused treatment and lived for 4 years but was fortunate that the spread was to organs and his death, when it happened, was swift and painless. With prostate cancer, it isn't usually like that; untreated bone mets are excruciating, the tumour can completely block the bladder leading to urinary retention, permanent catheterisation and / or kidney damage, serious infection can lead to confusion.

I would suggest that if you are just becoming single after many years, not treating is going to be the most difficult option; hormone therapy can keep the side effects at bay for many years without being an overwhelming regime for a single person to manage.

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

User
Posted 09 Sep 2019 at 21:04
With spread to the bowel and possible lung mets, I would want a very clear explanation of why they think RT is worth doing. You may find that the offer of RT is withdrawn anyway when you see the onco.

I would also want to confirm what kind of prostate cancer it is - adenocarcinoma is the most common but doesn't usually go to lung or bowel as easily as some other, rarer types. Type of PCa does sometimes make a difference to the suitability of the different treatments.

Never apologise for being a bit negative!

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

User
Posted 12 Sep 2019 at 07:31

Ian, I really struggled mentally when I was diagnosed with cancer, particularly when subsequent tests found an unrelated second type of cancer. It just seemed for a while that every test I had brought new and even worse news, and the future seems pretty bleak. Perhaps that's something like the way you're feeling at the moment?

I did two things which helped me enormously. Firstly, I had a series of counselling sessions with a Macmillan counsellor, and secondly my GP prescribed me a drug called Sertraline. I was on the Sertraline for about 3-4 months, and it really did help me in coming to terms with things. Please do go and see your GP and ask for help.

Best wishes,

Chris

Edited by member 12 Sep 2019 at 07:32  | Reason: Not specified

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User
Posted 08 Sep 2019 at 22:20
Are you sure that you will be offered radiotherapy? It is unusual to be offered curative treatment with a diagnosis of advanced prostate cancer.

The usual treatment pathway for an advanced diagnosis is hormone treatment - tablets for 4 weeks and then an injection every month or every 3 months at your GP practice. If you feel overwhelmed by the idea of faffing about with treatments, you can ask them to confirm it would be the 3 monthly injection that is prescribed.

Until recently, that would be it - chemo was reserved for men getting to the final stages of their life as a way of reducing pain and extending the time left a bit. It is only in the last 3 or 4 years that they have realised chemo can make the hormone treatment more effective if used soon after diagnosis. That doesn't mean you have to have it though; lots of men have held the chemo back in case they need it later.

If you decide not to have any treatment at all, this is called active surveillance and involves having regular PSA tests, an annual DRE (finger up the bum) and ideally an annual scan. If it looks like the cancer is getting worse, a decision can be made about whether to start treatment. However, with an advanced diagnosis, it depends where it has already spread. While it is absolutley your right to decide not to treat, you need to be realistic about the impact of that .... my father-in-law refused treatment and lived for 4 years but was fortunate that the spread was to organs and his death, when it happened, was swift and painless. With prostate cancer, it isn't usually like that; untreated bone mets are excruciating, the tumour can completely block the bladder leading to urinary retention, permanent catheterisation and / or kidney damage, serious infection can lead to confusion.

I would suggest that if you are just becoming single after many years, not treating is going to be the most difficult option; hormone therapy can keep the side effects at bay for many years without being an overwhelming regime for a single person to manage.

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

User
Posted 08 Sep 2019 at 23:04
Many of us in this forum are single and cope with cancer treatment perfectly adequately alone. There may of course be perfectly valid reasons why you wish to refuse treatment, but being single really shouldn’t be amongst them.

Best wishes,

Chris

User
Posted 08 Sep 2019 at 23:51
My wife of 34 years left me 6 months after my treatment.

At the time the loss of my relationship was more devastating than the cancer diagnosis but I have gone on to remarry and am currently really enjoying life.

There is life after a long relationship, don't give up!

User
Posted 09 Sep 2019 at 00:37

I would encourage you to at least go on to hormone therapy. It usually starts with a 3-4 week course of tablets and then 3-monthly injections. It will probably hold things at bay for some time and enable you to sort out other issues in your life. If you don't like it, you can always stop, but you can't wind the clock back later if you don't take the opportunity now.

User
Posted 09 Sep 2019 at 11:42
If you would care to fill in more details of your condition in your profile - click on “Bollinge” for mine as an example - that will give the sage and knowledgeable people here more idea of your current situation.

I wouldn’t want to die of prostate cancer if it could be avoided or postponed by treatment, some of which is shitty and some not so much. My mate has had five years of hormone therapy and he has no side-effects from his HT, and not really any symptoms of prostate cancer (PCa) itself.

Best of luck.

Cheers, John.

User
Posted 09 Sep 2019 at 16:16
Hi,

I have been on Hormone Therapy for 3 years now. Had 6 cycles of chemotherapy not long after that started. Except for a bit of tiredness and muscle aches from the HT and getting older there is no sign that there is anything wrong with me. No symptoms of PCa at all at present.

All the best

Dave

User
Posted 09 Sep 2019 at 16:27

Hi Ian,

            I'm a single Dad whose just finishing the paperwork from a 21 year marriage, on hormones and just had my 4th cycle of chemotherapy with radiotherapy coming after that. Yes at times its hard work to think positive but there's no way I would just not have treatment! Focus on all the things you still want to do, you have years ahead of you. Most of us are still out running, cycling, enjoying hobbies so focus on finding things to do, I have been to a lot of my appointments and all treatments on my own and have had no problems with anything.

Speak to the McMillan nurses as they can point you in the right direction for groups of like minded people around your area that you could talk to.

Ian, its all very overwhelming to start with but start the treatment your onco suggests and you will see things are not that bad.

Chris 

 

User
Posted 09 Sep 2019 at 19:48

Thank you all for your responses,

 I have been told it is radiotherapy, probably starting in early October, but that they wanted me do do the hormone treatment for 3 months first, which I have nearly completed. The icing on the cake today was that the PET scan shows it has metastasized to my bowel. Talk about the gift that keeps on giving. Last week I was told they have possibly detected lymph cancer in my right lung. I am seeing the oncologist in 2 weeks time, that will no doubt be a very cheerful meeting. Sorry about this negative response, but I am a bit down in the dumps, especially as I also have good in my urine again. Time to go and put some Black Sabbath on very loud.

Kind regards to all,

Ian

User
Posted 09 Sep 2019 at 19:56
Ian,

Paranoid V loud. Works for me.

Don't be down, be a fighter, don't give in.

Talking may help.

Do not give up.

kr

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 09 Sep 2019 at 21:04
With spread to the bowel and possible lung mets, I would want a very clear explanation of why they think RT is worth doing. You may find that the offer of RT is withdrawn anyway when you see the onco.

I would also want to confirm what kind of prostate cancer it is - adenocarcinoma is the most common but doesn't usually go to lung or bowel as easily as some other, rarer types. Type of PCa does sometimes make a difference to the suitability of the different treatments.

Never apologise for being a bit negative!

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

User
Posted 09 Sep 2019 at 22:14

Played that Dave! Personal favourite is N.I.B.

Cheers, Ian

User
Posted 09 Sep 2019 at 22:26

Hi,

I will put details in my profile, but for information:

PSA as of June was 88 (87.58 to be precise)

Gleason score of 8 (5+3)

T stage is T3b

Ian

User
Posted 09 Sep 2019 at 22:39
Hhhmm. Where did the advanced come from in your first post then? Where did they think the distant mets were before today? Spread to bowel means your diagnosis is probably upgraded from T3 to T4? Possible lymph node in lung gives you a dx of G8 (5+3) T3 N1 MX or G8 (5+3) T4 N1 Mx

On the face of it, a locally advanced diagnosis that might be advanced ... radiotherapy starts to make more sense as an option depending on what happens with a few months of HT.

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

User
Posted 12 Sep 2019 at 01:04

Hi,

My GP told me that basically there are 3 cancers to avoid (as if there is a choice). Prostate, ovarian and melanoma as they are the three most likely to spread. Like I said previously, I had symptoms for over 12 months before I did anything about it, and even that was only a chance comment to GP when I had gone there for something else. My blood test have a SPA result of 87.58, subsequently, two months into hormone treatment it was up to 125 -  I was assured it would go down lol. Is that unusually high - my parents neighbour was diagnosed with a PSA score of only 7!

Macmillan have said I am T4 now, should get the letter tomorrow confirming it which I am so looking forward to. My dad asked me about my bucket list this evening, I told him I haven't got one and have no intention of doing so, I think I have done pretty much all I wanted to, and several things I didn't. 

Does anyone else get the impression of being the elephant in every room the enter? I have yet to hear someone day "I am sorry to hear that you have cancer" - does that reflect more on me or on them? I don't know, but my mum hasn't mentioned the "c" word since I have been diagnosed. My dad at least asks me how I feel, but then doesn't want to hear the answer. It is all a bit crap really, or am I just being too "glass half empty"?

Ian

User
Posted 12 Sep 2019 at 02:19

Ian,

Most people find it difficult to know what to say to someone with cancer (or any nasty disease). It sounds like you are depressed too (which is not surprising under the circumstances), and that's not going to make it any easier for them to speak with you - they risk getting a response which they don't know how to handle. It's also not a time to make decisions about things like abandoning treatment - that's something that needs a very clear head and for you to be in control of your emotions. It's good that your dad is confident to talk with you - don't lose that, but try and build on it.

It sounds like you have a Macmillan nurse. I would strongly suggest you see them for a chat, and ask for a referral to see a clinical psychologist or other relevant clinician. Some hospitals have excellent trained volunteer counselors you could talk with - again, your nurse will know. Your GP should also be able to refer you, but probably not so quickly.

I think when you get your mind into a better place, you will be able to drive conversations with other people such that they don't feel uncomfortable talking with you about the cancer and your feelings.

User
Posted 12 Sep 2019 at 07:31

Ian, I really struggled mentally when I was diagnosed with cancer, particularly when subsequent tests found an unrelated second type of cancer. It just seemed for a while that every test I had brought new and even worse news, and the future seems pretty bleak. Perhaps that's something like the way you're feeling at the moment?

I did two things which helped me enormously. Firstly, I had a series of counselling sessions with a Macmillan counsellor, and secondly my GP prescribed me a drug called Sertraline. I was on the Sertraline for about 3-4 months, and it really did help me in coming to terms with things. Please do go and see your GP and ask for help.

Best wishes,

Chris

Edited by member 12 Sep 2019 at 07:32  | Reason: Not specified

User
Posted 12 Sep 2019 at 16:12

Hi,

Thanks again for replies. Looks like I might need to switch forums as hospital now need to investigate the bowel cancer before deciding on any treatment for prostate, off to see the colo-rectal team next week. Macmillan this afternoon suggested I might be switched from radiotherapy to chemo but I suppose that will be decided in the next few weeks (months?).

With regard to me being depressed, I know I am not as I can still concentrate and take in 4 hours at a go reading. I have suffered from depression before and couldn't read a sentence at a time then.

Feeling rather sanguine most the time, second guessing what the next had news will be. Thanks to all of you who have taken the time to reply, it means a lot.

Ian

User
Posted 13 Sep 2019 at 20:33

Hi,

I don't know if this is a shared experience, but I feel like I'm the elephant in every room I walk into. My family will never mention the "c" word, and the impression they give me is that it is like a cold, i.e. they will catch it from me. I have tried to explain the indignity of it, e.g  my car seat being wet all the time, conscious that I smell of piss as I have limited control over my bladder, but all I get is how I am meant to carry on. Never any empathy or even an attempt to understand it. 

Waiting, still, to hear about my bowel cancer diagnosis. According to Macmillan that has now taken precedence over advanced prostate cancer, but despite many attempts both yesterday and today, I cannot get any news on it. Apparently it is "urgent" but no feedback as yet. My appointment with onco regarding prostate cancer has now been cancelled until I have seen colo-rectal consultant. Another weekend of not knowing what the hell is going on and struggling to make sense of it all. Dragged into a world I don't want to be in with seemingly no way out. 

Sorry to be on a downer - I am not depressed, been there, done that and know those symptoms - but I don't feel I am coping. Never been scared of anything in my life before but am now.

Take care,

Ian

User
Posted 13 Sep 2019 at 21:24
That's very odd - if they thought the bowel cancer was a secondary from the advanced prostate cancer, you would remain under the oncologist and the hormone treatment would treat both the prostate and the bowel tumours. They wouldn't normally cancel the onco appointments. Do they think the tumours in the bowel are actually bowel cancer?

Do you have your diagnosis letter to hand? Does it say that you have adenocarcinoma? There are at least 27 types of prostate cancer - a couple of the rarer types do not respond to hormones, and are more likely to go to the lung than others.

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

User
Posted 13 Sep 2019 at 21:28
Elephant in the room ... depends a bit on age but your mum is probably scared to say the word, it is a generational thing, I think. my mother-in-law used to mouth it rather than say it out loud. As for other people, what do they say? What have you said to others when you first saw them after a cancer diagnosis?

When John was diagnosed, one of his staff would not come into his office; he stood at the doorway to say whatever it was needed saying. John said one day "it's alright, you can't catch it from me'" and the guy said "well you can't know that for sure, can you?"

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

User
Posted 13 Sep 2019 at 21:41

Ian

One of my first concerns when diagnosed was smelling of urine, having worked in and visited EP homes and working in conjunction with the odd incontinent person it was my biggest fear. Have you considered one of the sheath systems ? When my leaks were a  little but often  I used some toilet roll in a nappy liner between my penis and the pad. In the event of a small leak I would change the tissue and liner. I have found tenna pads quite good at containing any odour.

I never used "the c word" I have always said cancer, in the beginning I did seem to hesitate saying the word but not anymore. We have had a fair amount of cancer in our family, so talking about it has not been an issue. Having said that, I did find it easier to talk to work colleagues and strangers about cancer and it's effects.

Hope you get a solution to your issues.

Thanks Chris

User
Posted 13 Sep 2019 at 22:36

Thanks for the responses,

I need to try pads or something, it's just I associate that with old people lol. My mum is 83, she is what she is, normally extremely blunt and to the point, but not about my cancer. We did fall out for a year over the film "The Third Man", I can't even remember what the argument was about now! When my eldest niece visits I have to sit in the conservatory - in her ignorance she thinks her and her boyfriend could catch cancer from me. My dad, bless him, asks me how I feel but then changes the subject when I try to tell him.

I have not been told the type of prostate cancer I have, all I know is that it has metastasized locally. Whether or not it is the cause of my bowel and lung cancer I have yet to be told. Hopefully that will be next week. My eldest boy, 27, is really struggling with seeing me as I am now - I was his teams football coach for 10 years and the "hardman" of the Sunday league team when he was growing up - but my youngest son, 25, is completing his masters in bio -chemistry and genetics and has just completed an internship at the main hospital in Oslo (where his girlfriend lives) and is more relaxed about it. I have gone from a man to a mouse in 6 months and apart from the hormone treatment - which I hate - have not had anything else. Feeling weak is worse than the pain of this damn thing. Call it stupid pride, but I can take the pain far more easily than the indignity - perceived or otherwise - of this disease.

I am really at the point where, all things considered, I can't see the point of carrying on any more. Every day is a drudge, fogged up on medication and sleeping pills and no one I can really talk to.

More and more I think I will just let things take their course. 

Take care all and don't let my ramblings get you down.

Ian

 

User
Posted 14 Sep 2019 at 01:01

I also deal with elderly family which use incontinence pants and can smell, but this is due to failure to change them when they've got saturated. I've been wearing incontinence pants and now pads for 2 months, and they don't smell with small amounts of urine (they have some sort of odor control in them). I've never dumped a bladder full in them though, and if that did happen, I'd change them ASAP.

On the subject of cancer, I'll bring it up occasionally, usually in a humorous way, like mentioning some side effect of the hormone therapy if relevant to a conversation. I do this to make it clear I'm happy to talk about it, but I don't do it continuously - no one wants me to talk about cancer all the time. Sister-in-law mentioned my nephew is going through puberty, to which I said so am I, but in the opposite direction. It got a laugh, but also opens the opportunity for those present to ask me more about it if they want to.

For talking, you should try out a local prostate cancer support group. They vary considerably, so I can't guarantee one near you (if there is one) will be ideal, but it's worth a try. In addition to their main meetings, they often organise things like weekly gym sessions, walks (which are great for talking), massage and acupuncture which are great for relaxing, etc. If you say which town you're in, someone here might comment on any local support groups.

User
Posted 14 Sep 2019 at 01:08

In all the years I have been on here, I have never heard of anyone that was incontinent just with HT. You should get that checked out as it isn't normal!

The type of cancer should be written on your diagnosis letter - if you don't have a copy, ask your GP practice to print it off for you. 

 

 

Edited by member 14 Sep 2019 at 01:09  | Reason: Not specified

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

User
Posted 14 Sep 2019 at 22:11

Lyn,

I was incontinent before HT. Because I had so much else going on in my life I didn't mention it to my doctor, and then only in passing, until I had had symptoms for over a year. Typical man, don't do something important until it is too late. Mea culpa.

Ian

 
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