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Told operation too risky :(

User
Posted 27 Mar 2018 at 14:35

Hi Rich, I drove myself to and from radiotherapy each day. Journey time each way was a minimum of 35 minutes rising to an hour depending on traffic and roadworks.


I also did not have any toilet issues on the way home but I did have to run to the loo after the radiotherapy as my bladder was full!


You would see all the men getting to a loo quick style after finishing that day's treatment.


In fact, I had to ask where loos were as sometimes they were fully occupied. I now have several places at the hospital I can find a toilet!


Some days my bladder felt so full I thought I was in danger of having an accident on the treatment bed. Thankfully that never happened.


 


Ian

User
Posted 27 Mar 2018 at 19:13

I was going to use the Daft as a brush transport service for my RT treatment. There are so many PCa patients who have problems with mobility and I do not. Joke on the side - bright blue vans with their name one and “CANCER PATIENT CARE” in large letters on the side! Just to inform any neighbours who don’t know my condition! TBH it will suit me better to go from work on the afternoon then home afterwards. Great charity though and I felt a bit embarrassed by arranging to use them.......
Richard

Edited by member 27 Mar 2018 at 22:06  | Reason: Not specified

User
Posted 31 Mar 2018 at 20:25

This is the worst I ever felt so I'm sorry to be a burden. It is not fair to unload all of this on my 21 year old son so unfortunately you have to get the post. I will fight this disease head on but because of Dad I want honesty about my situation. Reading this back I know you can't answer.

User
Posted 31 Mar 2018 at 20:41

If I can post my histopathology report would anyone be able to give me an honest prognosis?

Edited by member 31 Mar 2018 at 20:42  | Reason: Not specified

User
Posted 31 Mar 2018 at 21:07

I am starting to feel very negative.

User
Posted 31 Mar 2018 at 21:35
Hi Rich
If you are wanting a road map of how all this is going to pan out then I don't think you are going to find one to be honest. I realise that our outlooks are going to be very different as I am a lot older and have no kids so the future isn't something I worry about.
I can understand that this is very different for you but we all share the fact that like it or not we have PCa and have to deal with it.
I think we have all experienced peaks and troughs following diagnosis. Even without PCa none of us knows how long we have left so we can only play the cards we are dealt in the best way we can and make the most of each day.
You still have to be kind to yourself and are allowed a wallow now and again. Do you think your son might appreciate you sharing your thoughts with him?

Sorry if none of this is helpful but I was feeling concerned for you.

Kevan
User
Posted 31 Mar 2018 at 21:53
Hi Rich. Just to let you know like Kevan I feel for you. Nobody on here can give you a prognosis honest or otherwise. Such a lot depends on how your body responds to the treatment. I worry about my husband's future a lot of the time. It's the nature of the beast I'm afraid.

Can you speak honestly with any of your brother's tonight. I know you don't want to put this on your son but I am sure he would rather support you through this difficult time than think you are ok about it.

Hopefully you will feel better soon and other members can offer you better advice.

Take care of yourself.
Ann
User
Posted 31 Mar 2018 at 21:53

How kind of you Kevan, I have talked about all of this with my son. I'm just sick! Everyone on here seems to take it all for granted but I know they must be the hardest people on the planet. I am not. Don't get me wrong, I am not scared but despite what the oncologist said the look in his eyes said it all.

User
Posted 31 Mar 2018 at 22:17

Kevan and Ann
you have to appreciate that I am an idiot. I think the word that defines this website is "kind". Your words have reduced me tears.
We lost Dad to prostate cancer horrifically. My brothers and I are absolutely rock solid, doesn't stop me crying...........thanks for your kindness!!!!!

User
Posted 31 Mar 2018 at 22:23
Hi Rich, it is very difficult dealing with this disease and as others have said a prognosis is very difficult due to the very high amount of variables.
I feel for you but believe you will find a way through this. We all do in time.
You say your not scared, I am a lot of the time.
I am not hard but I try to be as positive as I can and don’t want this disease to define me, although a lot of the time it does.
As Kevin has said we just try to get on with our lives and enjoy each day.
I try to live my life normally but with an enhanced sense of those close to me and appreciation for what I have in my life.
All the platitudes said I fell like a pendulum swinging from one emotion to another.
I have my dark moments too when I think of my wife and three sons without me.
It is surprising that strength comes when you need it.
I am waiting on the results from a bone scan on 26//2 and an MRI 19/3, we spend a lot of time waiting on PSA results, scan results etc which is difficult.
I dread going to oncology for results.
But most days I am very active, do lots of different things and try to appreciate each day.
I really hope you feel better in yourself soon.
Best wishes, Ian.
User
Posted 31 Mar 2018 at 22:35
Rich - Responding in your way to how you feel certainly doesn't make you an idiot unless of course we all are😊 Losing your Dad to PCa and then being diagnosed with it yourself must affect you but it's reassuring to know that you and your brothers are strong together.
Hopefully tomorrow will be a better day.

Take care.

Kevan
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 23:12

I'm not bothered about crying. You lot are amazing. I can't help looking at my son, I am so proud of him but we have agreed I may be here in ten years but no chance of 15. I didn't really understand dad's illness until he died. Then my heart broke. He was my age. That is a big thing to say but we are a really close family. Sorry, Im getting upset again.....

User
Posted 31 Mar 2018 at 23:32

I don't think there is anything to hope for for me long term. Everything is sorted for my little boy so I can go any time. It isn't fair on him. My fantastic son has had the most horrific hand dealt to him and I;m so horiffied may not be there for him.

User
Posted 31 Mar 2018 at 23:44

Enough negativity! My son will be fine, I will be however I will be. You will be fantastic as usual.

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 00:22

Sorry if I offended you Lyn, is my cancer not bad enough?
I only ever post after a few drinks, My last post was a bit more positive. What medical team are you referring to? I know you are fantastic for this site and I know I am rubbish. Please pm me with instructions.

User
Posted 01 Apr 2018 at 00:46

I don't know why you are being like this? The impression I get from one of the best oncollogists in the country is that he may give me ten years. Does this offend you?

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 01:03
Originally Posted by: Online Community Member

No problem Lyn! The oncologist said that because of my age they would do everything they could to give 10 years plus life expectancy. That only takes me to 60+ (better than a lot of people, I know!) but I then asked if there was any chance of cure and he said yes. Is this a realistic outcome for me to consider?




"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 11:21

I like that word and I like that message. Therefore I shall "believe"! :)

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 19:22

Yes it has been and thank you so much for your consideration. You beautiful people and my son should not have to put with me! He is cool and you are so thank you all again!

User
Posted 01 Apr 2018 at 19:42

I owe you an apology Lyn. I'm very sorry. Thanks for your understanding and tolerance.......

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 01 Apr 2018 at 20:05

Thank you so much Steve. I am so grateful for your support. I will hopefully get a bit stronger emotionally but if I don't hey ho!! I'm not too bad to be fair. I've worked every day this year and some weekends (first time in years!). Did someone say hormone therapy side effect was cold? 3 weeks now and it is stopping me training!!!

User
Posted 02 Apr 2018 at 00:29
Originally Posted by: Online Community Member

I owe you an apology Lyn. I'm very sorry. Thanks for your understanding and tolerance.......



That's silly - nothing to apologise for. We all know now though to be careful how we respond if you post late at night 😂

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 16:39

I started RT this Monday at the Freeman Hospital Newcastle. I have CT scan then tomotherapy treatment targeting prostate, seminal vesicles and pelvic lymph nodes. Cancelled today due to machine breakdown! 37 fractions in all. Is this a good method of treatment?

One final question - I have not had a PSA test this year. I was told I would have a PSA and Testosterone check a couple of weeks before RT starting. Should I contact my onco to ask about this?

Richard

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 12 Apr 2018 at 17:35

Thanks Ian, a very interesting article. I believe I am having tomotherapy due to the requirement to treat lymph nodes and possibly seminal vesicles. Tomorrow's session is also cancelled as machine still not up and running.
Richard

User
Posted 22 Apr 2018 at 11:49

Hello everyone,


I managed to get a full 5 days of RT this week. Staff are great and it only takes 15 minutes but they're not always on time. I was over 40 minutes late for one session due to traffic. The desk was closed when I tried to ring them but they rang me. They told me not to worry and just get there when I could. They stayed back to treat me which was good. One poor chap travels from Whitehaven to Newcastle and back each day - 2 and a half hours each way so I can't complain! I've arranged for most of my appointments to be 3:30 or later which means I have to administer the enema at work - accessible toilet if I can get it!


I thought I may have had another UTI so I went to GP to get that checked. I've no cystitis but discoloration very noticeable, Got a new lady GP I haven't had before. She asked a lot of questions and had a very good bedside manner. At one point she asked me "How do YOU feel" which I very much appreciated as not a lot of people who aren't immediate family or close friends ask that sincerely. I'm still suffering from bad cold which must be HT related. Nocturia seems to have got worse again despite taking Tamsulosin. I had to go to bed of Friday afternoon for an hour and a half but thats too early to be RT related. 


Oh, and guess what? I still haven't got a specialist nurse!!!


Richard

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 22 Apr 2018 at 21:26

NCCC is a centre of excellence. I don't need anything more as they answer every question I ask them. I have total respect and trust for these people so I will leave the "specialist nurse" whinging forever, My outcome is pretty much already decided we just don't know what it is yet. I'll be fine thanks to these amazing professional people!


Richard

Edited by member 25 Apr 2018 at 09:57  | Reason: Not specified

User
Posted 26 Apr 2018 at 14:14

I've mentioned that I've had cold symptoms since I started HT. I have had several instances of stomach cramps and diarrhea. I couldn't get out of bed on Tuesday morning and today so I went to GP late this morning. He gave me a quick MOT and took blood samples for checks. Before this nightmare I hadn't had a day off work in 10 years!
I needed to wee this morning and there was nearly no flow with some discomfort (about 3 times in an hour). This got better later.
I have noticed (I think!) that my urine has an orange/red tint to it. It is consistent so I'm wondering if this is blood? I've only had 11 RT sessions so I would have thought it is a bit early to be caused by this. Any ideas?
Richard

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 17:21

I asked for a urine test for UTI last week on Tuesday but it was negative. I don't know if they automatically check for blood etc. She did a quick check in front of me and then the rest of the sample was sent off for another (more thorough?) test.
Richard

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 17:43

Fair question AC but I believe I am. I drink 2 litres of water at work every day before 1pm and have done for the last few years. I had urinary problems before I had any treatment whatsoever but it has got worse.
Richard

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 21:54

Cheaper? How very dare you! ;)


OK, will do thank you very much.


 


Immodium a complete failure for my other "issue" so I've had my first dose of 10 "Fybrogel" treatments on Ian's recommendation. Fingers crossed as I'm supposed to be driving to Gretna Green tomorrow! (shopping with son not getting hitched!).


Richard

Edited by member 26 Apr 2018 at 21:59  | Reason: Not specified

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 26 Apr 2018 at 22:29

Thanks Chris & Lyn,
They told me that my bladder prep has been fine except today when the radiographer said she thought my bladder looked a bit more full than normal. This was looking at me when lining me up for CT scan. She is so good looking I am wondering if my libido issue is not there? (it is but I still find women attractive!) I'm a perfect gentleman so nothing to worry anyone. There have been a couple of times this week when they said they are late and if I need to I could have a wee then drink another 2 cups of water.
Incidentally there is very little social discussion in waiting area which is a shame.
Richard

Edited by member 27 Apr 2018 at 01:39  | Reason: Not specified

User
Posted 29 Apr 2018 at 01:03

There are a lot of posts that give advice about how to proceed with one's diagnosis. I'm not so confident with mine yet "general" posts try to indicate that everything will be fine. I don't believe it. I really want to fight this head on but i want to be true to my family. G9 is not good. I have had no indication of anything whatsoever with regard to my treatment. I will obviously mention it on my clinical review on the 15th May??? No PSA test this year. I think there should have been a PSA test before RT treatment. I hope to have a better update later?????
Richard

ps Fybrogel nearly turned me inside out. Sorry Ian.

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
 
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