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Told operation too risky :(

User
Posted 31 Mar 2018 at 22:50

My wife always tells me tomorrow is another day. And often she is right and it’s veey much better. My early posts on this website were very very similar to yours. I’d lost hope and was afraid and didn’t know which way to turn. You are doing fine just by posting and sharing. We are not all hard but just “ weathered “ a bit more. Stay strong.

If life gives you lemons , then make lemonade

User
Posted 31 Mar 2018 at 23:50

Everyone is allowed to wallow, but then you need a bit of a reality check. Your medical team would not be offering you curative treatment if they didn't believe it could cure you - the NHS can't afford to provide pointless treatment so there has to be a cost benefit. There are men on here with far worse diagnosis than you and have still been around 10, 12, 15 years later.

Do you sometimes post after a few drinks?

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

User
Posted 01 Apr 2018 at 01:01

Not offended - you have misinterpreted! We have discussed before - HT with 37 sessions of RT is a curative treatment, it was offered to you after the specialist said surgery had a less than 50% chance of curing you so RT/HT would give you a better chance.

You might never have met the medical team but they exist - the specialist that you have met, the oncology nurse / clinical nurse specialist, the radiographers that interpreted your scans, the pathology team - all put their knowledge together to determine which treatments might or might not be suitable for a specific patient.

Nothing wrong with wallowing - as someone else commented above, we all need to do it sometimes. Tomorrow will hopefully be a better day.

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

User
Posted 01 Apr 2018 at 01:05
Originally Posted by: Online Community Member

NHS resources are stretched and they would not be offering you a curative treatment if they didn't believe it had a reasonable chance of working. If they thought your cancer was incurable, they would have been offering you long term HT possibly with early chemo and / or with one of the new generation hormones.

Believe :-)

Believe

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

User
Posted 01 Apr 2018 at 10:54

Hi Rich, 

From the moment my psa was diagnosed as high I didn't have a single drop of alcohol for over 6 months when I thought my body was completely healed from the operation.  Even now I never have more than 2 glasses of beer or half a bottle of wine and never more than twice a week. 

I used to think having no alcohol would be torture but I didn't miss it, from what you read it puts stress on your body and immune system and gives you ups and downs, there's very little to be said for it except it might give some temporary mental relief.

Regards
Peter

User
Posted 01 Apr 2018 at 12:49
Hi Hope today is a better day for you Rich.

Regards

Ann

User
Posted 01 Apr 2018 at 19:46
Good news, Rich.

I think, going through what we're going through, we all have days when we feel like you did, hopefully, the good days will outnumber the bad days.

This site has really helped me through the worst of times and will do in the future, I'm sure. You'll find good advice here, from good people.

Take care.

Steve

User
Posted 02 Apr 2018 at 01:24

Good morning Rich,

So, you post a bit late at night? After a few drinks?

Many have been there. Done that. I suspect?

It's called release. Letting go. It's allowed and okay. And if you cross a line which you cant't actually see when you are tired and intoxicated and depressed, no worries. Just delete it or amend it the next day. And if you don't. No bother. Most will not take umbrage.

FWIW your life expectancy as stated today may seem short. Reality is that treatment options continue to progress. Outcomes continue to become better. People living with PCa who are diagnosed yesteryear are living beyond prognosis. No reasons why you should not also.

In the meantime, you may be down, will be "dessip ffo". Please feel free to vent here.

atb to you

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 02 Apr 2018 at 06:09

Hi Rich,

We have all been there and I appreciate the fact that it is especially hard for those that are diagnosed at an early age. However, knowing our otherwise likely life span risks being shortened by this disease, we should do two things as I see it. One is to learn as much as we can about PCa and give ourselves the best opportunity of a balance between quality and extended life by being prepared to accept and push for best treatment as individuals and secondly to make the most of the time we have. To dwell disproportionately on our own situation means we are letting this disease rob us of valuable time and increase depression. Too much heavy drinking does not make the problem go away but can make it worse.

As has been said, your medical team you are in direct contact with and those supporting them, along with researchers are working to extend your life and those of others. Try to be less negative not only for yourself but for your family. We will support you but being more positive is something that only you can do regardless of what any of us may say.

Barry
User
Posted 12 Apr 2018 at 17:01

I wish you all the best for your treatment Richard. I have replied to you on the MacMillan forum but thought I would post the article comparing tomotherapy versus VMAT IMRT for those on the PCUK forum.

 

https://www.itnonline.com/article/two-kind-vmat-versus-tomotherapy

Ian

User
Posted 22 Apr 2018 at 12:01

Don’t hold your breath waiting for a specialist nurse - my dad, Stan and John all had the same CNS but we have never met or spoken to her. In some areas, they don’t seem to even allocate one. Another postcode thing.

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

User
Posted 22 Apr 2018 at 17:45

I agree with Lynn, seeing the urology/oncology specialist nurses is rare. I sometimes speak to them on the phone.

But during salvage radiotherapy all patients were seen weekly by a nurse specialist to discuss progress/issues.

Lynn, did John see someone weekly during radiotherapy?

 

Ian

User
Posted 22 Apr 2018 at 17:53

He saw the oncologist every Wednesday - Mr B had the weekly scans available and would go through any side effects that were emerging, etc.

At some hospitals, men only ever see the nurse specialist rather than a doctor, or the nurse is the person who gives results etc. Constantly amazes me how different it is across the country!

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

User
Posted 26 Apr 2018 at 14:55

Did you get a urine test at the doctor's too?

I would get one, it will show is there is any blood etc in your urine.

Ian

User
Posted 26 Apr 2018 at 17:28

Rich, are you drinking enough? Dark urine is associated with dehydration. It is very easy to go down that route without realising it, as I have found myself!

AC

User
Posted 26 Apr 2018 at 18:07

Could be radiation cystitis - try drinking cranberry juice (but not the cheaper 'from concentrate' stuff - try to get pure juice or buy frozen cranberries and blitz them in a food processor.

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

User
Posted 26 Apr 2018 at 22:03
Rich

I did a variation on another member's recipe. I boiled my fresh or frozen cranberries in a small amount of water without sugar until they popped, I then strained them through a sieve. You can then add water if the taste is too strong.

Make sure you are getting the right amount of water in your bladder for the RT session. I know for a fact that on occasions my bladder was empty during treatment yet it still went ahead. I know the bladder was empty because my catheter tap was left open.

My problems started 3/4 months post SRT, the first sign was losing lots of debris and blood clots. There are very few consultants that understand radiation damage, fortunately severe damage is not that common.

Detecting water infections can be difficult, samples are sometimes sent to the lab to be cultured so the correct antibiotics are prescribed.Mine often come back as retest required.

Best wishes with the rest of your treatment.

Thanks Chris

User
Posted 29 Apr 2018 at 01:12

G6 or G9 makes no difference if they get it all. And not much point doing a PSA test prior to starting RT since the hormones will be keeping it falsely low. I don’t know what you mean about having no indication of anything.

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

User
Posted 29 Apr 2018 at 01:44

Not many people in this world get a full remission from cancer although some are more likely than others - leukemia and some lymphomas, for example. That's not to say that no-one gets full remission from prostate cancer, they get on with their lives and put it into their past. Nor does it mean that there aren't loads of men who get a 15 or 20 year remission after successful treatment. Your onco is giving you a shot at curative treatment - if it works you get full remission or a respite of 20 years or more as a prize. He wouldn't be wasting valuable resources if he didn't believe it had a reasonable chance of being successful.

Time for bed!

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

User
Posted 29 Apr 2018 at 11:33
Hi Rich, sorry Fybogel doesn’t seem to work for you. I know people who take it for other bowel conditions too and you are the first I’ve heard from where it doesn’t improve symptoms.

We are all unique.

Best wishes, Ian

User
Posted 29 Apr 2018 at 22:38
Originally Posted by: Online Community Member

Not many people in this world get a full remission from cancer although some are more likely than others - leukemia and some lymphomas, for example. That's not to say that no-one gets full remission from prostate cancer, they get on with their lives and put it into their past. Nor does it mean that there aren't loads of men who get a 15 or 20 year remission after successful treatment. Your onco is giving you a shot at curative treatment - if it works you get full remission or a respite of 20 years or more as a prize. He wouldn't be wasting valuable resources if he didn't believe it had a reasonable chance of being successful.

Time for bed!

My mum had an agressive breast cancer when she was 50, she is now 88 I think that counts as a full remission?

User
Posted 29 Apr 2018 at 22:46

Yes, I would say so as well - how blessed you are as a family. Current NICE thinking is that women treated for breast cancer become just as likely to get a recurrence or new breast cancer, unless they stay on HT for at least 10 years so unless your mum's medical team encouraged her to stay on treatment for a sustained period she is doubly blessed. We have a nephew who had leukemia as a toddler and is now in his 30s. As I said, the fact that, statistically, not many of the 360,000 who are diagnosed with cancer each year in the UK achieve full remission doesn't mean that no-one does.

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

User
Posted 30 Apr 2018 at 13:37
Hi Rich, it depends how low the numbers are but generally it will mean you are less able to fight off infections so be cautious when you are around people at work etc. The radiotherapy is a likely cause.

My neutrophil count has always been a bit low and has averaged around 0.85 the last year when it should be 1.5-4.0.

I’ve had a couple of re-tests to check the numbers.

My oncologist wasn’t too concerned about this although my GP is.

If your white cells are really seriously depleted you need to follow any medical advice given as it can become a medical emergency.

If you get a fever or feel unwell contact your medical team immediately.

Take care, Ian.

User
Posted 30 Apr 2018 at 23:10

Not something I know anything about - a bit of infection wouldn't be unheard of during RT

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

User
Posted 01 May 2018 at 20:04

Good news

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

User
Posted 01 May 2018 at 20:51
That’s good news a Richard. Onwards and upwards!

Ian

User
Posted 01 May 2018 at 21:47
I have used the Maggie’s at Edinburgh, they are fantastic. Great they have a group which suits for you.
User
Posted 04 May 2018 at 14:09
These are very normal feelings Richard. I attended a Living with cancer course at Maggie’s which started 2 days after my salvage radiotherapy ended. The psychologist running the course discussed it. When on treatment we get a lot of attention and feel we are doing something about our cancer. When the treatment and attention suddenly ends we feel abandoned and all at sea.

It passes with time, just recognise it and let it go.

You’re a bit early in feeling like this mind, you still have 20 treatments to go. What are you like?!

Ian

User
Posted 04 May 2018 at 14:18

Richard,
As Ian said this is fairly normal. When I finished my 37 sessions of RT and arrived home I was really emotional, I met up with lots of men (and women having RT for their own issues) and it was like being part of a family. Some were obviously at different stages of their sessions, some finished others joined. There was always a good time of sharing together and encouraging each other and once completed it felt like losing friends who we were unlikely to see again.

Arthur

User
Posted 05 May 2018 at 00:01

Hi Rich I had the same treatment at the freeman in newcastle, 6 months H/T and then the radiation which only takes a few minutes, followed the next day with cat scans, totally painless and I still feel good 8 years later,
So good luck and try not to worry

User
Posted 08 May 2018 at 18:31
I symphysis with your dellema , I have had Prostate Cancer for eight years with out treatment. This may shock my readers . To be honest I have had no major problems since I refused treatment in 2010 when I was diagnosed with ProstateCancer. But I didn't make this decision lightly . I also have A form of MND a muscle wasting illness. I also have COPD and a Spimal condition and heart problems. Enough illnesses one would say . You see two of my other illnesses are terminal . Hence my refusal of treatment for my cancer .

Also I have surprised the Consultant who told me in 2010 if I didn't have the reccomended treatment My life expectancy would be lessened . I have proved him wrong and he is amazed I am still alive. So all I am saying is don't give up on hope .

User
Posted 08 May 2018 at 20:29

That may be a quirk of some hospitals - it isn't true of them all. There again, J always had the 8.30 or 8.45 appointment so perhaps was lucky?

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

User
Posted 08 May 2018 at 22:46
My treatment was rarely on time. Most days it was 15-30 minutes late by which time I was bursting.

Sometimes the team would ask us to delay drinking the requisite amount of water to fit around things.

The delays were often due to how busy they were and the time for some people getting in and out being extended for whatever reason.

User
Posted 08 May 2018 at 22:53

I have been at RT suite when appointments have been delayed because very young children and vulnerable adults with learning difficulties etc need so much more time from the staff. I was always just thankful that it wasn't my child or relative; it must be terrible to go through such treatment if you don't really understand what is happening.

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

User
Posted 10 May 2018 at 00:20

No of course (wasn't suggesting you would) - but others in that situation may not realise why delays can happen. It's like when I am stuck at Kings Cross and everyone is getting mad because no trains are running due to an "incident on the line" - I have been known to stand on the concourse explaining to strangers that they might get home a bit late but someone else is never going home again and a family somewhere are hearing terrible news.

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

User
Posted 14 May 2018 at 20:12

S/he may just ask you about any side effects you are experiencing - an opportunity for you to ask about the bowel / bladder changes?

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

User
Posted 26 May 2018 at 22:58

Rich

Not emptying a full bladder is never ideal as it can put pressure on the kidneys. Make sure you stay relaxed, I found changing positions when urinating  sometimes helped the flow of urine, don't quite know why but slightly pushing the base of the penis towards the scrotum increased the flow. 

Constipation can be a cause of retention.Retention is quite painful and if you feel that your bladder is getting too full and uncomfortable get yourself down to your local emergency department. 

Thanks Chris

 

 

User
Posted 26 May 2018 at 23:01
I agree with Chris, go to A & E and get checked out. Retention started me on this path.
User
Posted 26 May 2018 at 23:41

I agree with the previous comments Rich. Go and get checked out please.

Ian

User
Posted 27 May 2018 at 09:44

Rich

How are things, did the medication kick in as advised or are you still suffering ?

Thanks Chris

User
Posted 27 May 2018 at 14:47
Glad to here that Richard.

I hope the remaining RT sessions go well.

Ian

User
Posted 05 Jun 2018 at 22:57

well done for getting through that! Fingers crossed it' good news in a few months time - Now get this party started!!!

User
Posted 06 Jun 2018 at 00:55
Congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2018 at 06:54

It's a great feeling isn't it. Well done.  I hope the side effects wear of quickly and that your results are good.Glad you met some nice people there as that helps you to get through it all.

All the best

Kevan 

Life doesn't have to be perfect to be wonderful 

User
Posted 06 Jun 2018 at 09:56

Well done getting through the radiotherapy Rich, it is a great feeling to finish the treatment. 

I must admit I was quite sad to say goodbye to those I had talked to in the waiting room and the radiologists who were fantastic.

That’s really nice that you got a birthday card.

best wishes,

Ian

User
Posted 06 Jun 2018 at 10:13
Hope your side effects clear up soon and all the best wishes for a positive outcome

Cheers

Bill

User
Posted 15 Jun 2018 at 22:09
Have a fantastic day
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jun 2018 at 22:24
Have a great day you deserve it
User
Posted 16 Jun 2018 at 23:21

I'm early in my PCa journey, and have just read this whole thread. It's been a great education, one that I really appreciate. I like and appreciate you, Richard, you, LynEyre, and all the other posters here, and indeed the ProstateUK site itself. Hope you had a good day as best man today, Richard. (LynEyre, you referred earlier here to a course of treatment that my doctor suggested might be his recommended course for me, depending on test results Tuesday -- RP + RT + hormones, and maybe even chemo too. I'm in the U.S.)

Edited by member 16 Jun 2018 at 23:24  | Reason: Not specified

User
Posted 24 Jun 2018 at 06:08

Seeing a specialist privately is a great idea you will get time to chat and ask all these questions and get straight answers.

If you are feeling physically ill you MUST speak to your team at the hospital or your GP.

You have had curative therapy, at some point you should be able to stop the hormones, then you will feel better. 

The girlfriends will come as your confidence returns (with or without a hardon! !).

 

 
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