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Told operation too risky :(

User
Posted 29 April 2018 00:12:02(UTC)

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


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User
Posted 29 April 2018 00:23:05(UTC)

Hi Lyn,
you posted on my thread that G9/G10 had a much higher chance of recurrence (or was it very poor chance of remission?). I love that you shoot me down in flames with the stupid things I say. It makes it so clear how crap private cancer care is. I don't think you really mean that a G9 T3b N1 M0 is ok because even I am realising that (and you said it ) full remission is unlikely.
This helps!!!
Richard x

User
Posted 29 April 2018 00:44:30(UTC)

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


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User
Posted 29 April 2018 10:33:25(UTC)
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 April 2018 18:54:41(UTC)

Strange situation Ian. I had one pint of Cider on Friday night at cricket club after stopping Fybogel (never played just a beautiful location). Put my glass on the bar and felt stomach turmoil. Same thing happened today after Sunday lunch. I need to set up some design for experiments to determine the actual cause! I think I will try a Taguchi method unless anyone has a better idea?

User
Posted 29 April 2018 21:38:29(UTC)
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?
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User
Posted 29 April 2018 21:46:04(UTC)

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


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User
Posted 30 April 2018 00:42:03(UTC)

That's it, I'm buying a slow cooker!!!

User
Posted 30 April 2018 12:01:11(UTC)

I was driving back from RT session this morning when I received a call form my health centre. I was asked to come straight in for a blood check at the doctor's request (the one I saw last Thursday). I asked the nurse who took the blood why it had been requested. She said it's because I have a low white blood cell count. Does anyone know what the implications of this are?
Richard

User
Posted 30 April 2018 12:37:17(UTC)
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 April 2018 20:00:00(UTC)

I rang the PCUK nurses later this afternoon and told the nurse of my situation, She told me there was no chance that a low white blood cell count could be as a result of PCa, Hormone Treatment or Radiation Therapy. She added a possible cause would be a viral infection. I stopped looking on google as I was getting concered. I have telephone appointment with GP on Friday. I hope there isn't anything to worry about?
Richard

User
Posted 30 April 2018 22:10:37(UTC)

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 17:55:38(UTC)

I mentioned my stomach problems to radiographers today just before treatment. When it was over they said they had arranged for one of the "specialist" urology/oncology nurses to have a chat with me (Hurray!!!). Got 2 names and their telephone numbers too.
She sorted everything out, told me everything I wanted to know and gave me a box of Loperamide Hydrochloride for my loose bowels. Very probable RT causing this.
She even went onto NHS system and retrieved my local health centre blood test results from yesterday! Everything is fine from the blood tests so panic over with regard to that. Happy days!!!

User
Posted 01 May 2018 19:04:48(UTC)

Good news

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


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User
Posted 01 May 2018 19:51:50(UTC)
That’s good news a Richard. Onwards and upwards!
Ian
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User
Posted 01 May 2018 20:31:55(UTC)

Sorry for hogging the site but there was another great find today. I was half an hour early and I had looked up support groups on here. They pointed me to Maggie's. It is a separate building which I didn't know was there. I was really warmly welcomed but more importantly they are running a Younger Men's Prostate Support Group which is on the day after I finish my RT!
:)
Richard

User
Posted 01 May 2018 20:47:30(UTC)
I have used the Maggie’s at Edinburgh, they are fantastic. Great they have a group which suits for you.
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User
Posted 04 May 2018 11:13:54(UTC)

Why is it that I have this slowly surfacing dread of RT treatment ending? I want to make sure my family or friends don't organize some extravagant celebration as I fear I would just burst into tears! I have had 17 fractions with 20 left to go finishing 5th June (day after my 51st birthday!). Is it hormonal or something else. I feel in a safe place whilst I'm receiving this treatment, feeling good, training again and drinking much less. As soon as it ends I'm right back into "High grade" and "High risk" territory starting the periodical PSA testing etc etc that so many of you know about. I'm sure I read about this phenomenon (and other potential emotions when RT ends) in one of the PCUK publications but I can't find it on line? 
Richard

User
Posted 04 May 2018 13:09:32(UTC)
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
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User
Posted 04 May 2018 13:18:47(UTC)

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 04 May 2018 13:24:36(UTC)

Probably hormones Ian!! (therefore not my fault :)) I'll get on the bike this afternoon and get myself back to normal. I had a longer guide round Maggie's before my treatment this morning. What an unbelievable place! I will definitely be spending more time there.
Richard

User
Posted 04 May 2018 23:01:19(UTC)

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

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User
Posted 08 May 2018 17:31:07(UTC)
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 .
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User
Posted 08 May 2018 19:24:58(UTC)

How normal is it for treatment to be delayed? I always get my preparation timed correctly but over 90% of the time some other bloke doesn't (either bladder content and/or too much wind)!. This is completely messing up my preparation. I'm sick of being told to go and empty my bowel (unlikely) and start water again? For 15 minutes treatment I am regularly there for one and three quarter hours!!! I'm going to change to get early appointments as it must be compromising my treatment. It must make the timing for the microenema wrong too! Sick!

User
Posted 08 May 2018 19:29:28(UTC)

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 20:50:23(UTC)

Well I'm going to try and get the 8:30 or 8:45 appointment. It is a joke. I feel sorry for the staff as they often go past their finish time. It's also not necessarily the fault of other patients with "gas" problems!

User
Posted 08 May 2018 21:10:01(UTC)

Today you had a gentleman who was staying in a ward who wet himself in the waiting area waiting for a porter to take him back to his ward. Poor man new it was coming! The other gentleman who delayed everyone elses' treatment had uncontrollable flatulence? This is supposed to be a centre of excellence for god's sake!!!

User
Posted 08 May 2018 21:46:33(UTC)
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 21:53:57(UTC)

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


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User
Posted 09 May 2018 06:56:30(UTC)

If delays were happening because of children or any seriously ill patients being treated I would off course not make any complaints.
Richard

User
Posted 09 May 2018 23:20:28(UTC)

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


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User
Posted 11 May 2018 20:16:56(UTC)

21 fractions complete, 16 remaining. I must have urinated 30 times already today and my bowel movements are too frequent and too loose! Yesterday was similar. I have a clinic review on Tuesday (first one since planning session weeks ago). I don't feel great but it's all relative as much worse conditions being endured by some members on here. This can't be normal???? I had an 11:30 appointment today so I had nothing to eat. It worked but no good for my midweek later appointments.....
Richard

User
Posted 14 May 2018 18:23:29(UTC)

Does anyone know what I can expect to happen at my first clinic review with oncologist?
Richard

User
Posted 14 May 2018 19:12:23(UTC)

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


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