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User
Posted 29 Apr 2018 at 01:23

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 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 19:54

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?

Edited by member 29 Apr 2018 at 20:13  | Reason: Not specified

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 01:42

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

User
Posted 30 Apr 2018 at 13:01

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 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 21:00

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 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 18:55

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 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 21:31

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 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 12:13

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

Edited by member 04 May 2018 at 12:15  | Reason: Not specified

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 04 May 2018 at 14:24

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 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 20:24

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!

Edited by member 08 May 2018 at 20:26  | Reason: Not specified

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 21:50

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 at 22:10

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 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 09 May 2018 at 07:56

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

Edited by member 09 May 2018 at 09:18  | Reason: Not specified

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 11 May 2018 at 21:16

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

Edited by member 12 May 2018 at 09:00  | Reason: Not specified

User
Posted 14 May 2018 at 19:23

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

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 25 May 2018 at 11:33
Latest update - Just finishing 7th week of RT with 7 treatments left. Still getting up 5 to 10 times a night and discomfort very much more noticeable with flow sometimes stopping completely. Bowel condition worse then ever since 2nd week. No improvement taking Loperamide, No improvement stopping taking Loperamide. My opinion now is just grin and bear it with it finishing in 11 days. The treatment has gone on longer as 2 days lost to machine breakdown, one day planned maintenance and 3 bank holidays. A bonus is that despite this and being up so frequently I have showed no signs of fatigue whatsoever. Staying on the Low Fibre diet seems absolutely pointless and with the bank holiday weekend coming up I think I'm going to eat as normal. Last clinic review is on Tuesday. I won't have very spicy food but I'm sick to death of no coffee, white bread, potato, white rice and pasta! It can't make my condition any worse can it?
Richard
User
Posted 26 May 2018 at 22:19
I have got even worse today. I can't wee more than a teaspoon volume wise and it hurts. I've realised I forgot to take my Tamsulosin tablet yesterday as I have been advised to have them around tea time to make them more effective during the night.

I won't see anyone in Hospital until Tuesday. Am I in any danger? Sorry to be a pain again.....
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 11:04
Chris/Ian/AWR,

the medication did kick in just in time so I'm back to normal (?) now. It is a bit scary how critical it is having one Tamsulosin tablet a day. I use one of my sons tablet boxes so I can see if I have had the medication required for each day. Hopefully having 3 days off will help to get through last 4 fractions next week and a final 2 the week after. Hopefully it will get better from then!
Richard
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 20:28
Well, here at last! Final RT tomorrow and definitely not feeling anything but happy for it to be over. Chronic diahrroea and radiation cystitis will hopefully abate from now/tomorrow/a week's time but I have avoided fatigue......!! I've bought a big box of Hotel Chocolat for the radiography team who have been great. Took my son in today and he's off to Cyprus tomorrow for the summer. A wonderful couple I have met in the waiting area even bought me a birthday card and some chocolates (51 years old yesterday).

Now is the big wait.
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 

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 22:03
I've had a hopefully good indication that one side of symptoms are better than they were yesterday. Fingers crossed as I'm best man at my twin brothers wedding tomorrow!!!
Richard
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
 
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