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Told operation too risky :(

User
Posted 13 Jan 2018 at 11:04

After being diagnosed on Tuesday T3b possibly N1 5/4  Gleason 9 after PSA 18 & 23 I have just been advised by the surgeon to go for RT/HT instead of robot assisted prostatectomy. I'm disappointed as I had hoped to have the op & be rid completely if possible. He also quoted a 50% chance of a ten year survival which was a bit of a shock. He said if the chance of success was more than 50% he would advice to have it but my chance was less than 50%. I'm back to being worried again!

User
Posted 25 Feb 2018 at 15:09

Hi Richard

Re your last post on your state of mind, there is no reason why you shouldn’t feel anything but well.
I’m T3b I have had RP & RT plus various types of HT almost everything other than Chemo. It’s now 12 years since I was first diagnosed. I’m a tad older than you, but I can honestly say that I have never felt anything but well the whole 12 years. Just stay positive, don’t let the b***ger get you down.

I’m also an engineer and a Geordie. I have traveled all over the World regardless of my Pca. But I’ve never been to Japan, but aways wanted to, still do.

Stu

User
Posted 25 Mar 2018 at 02:05

Many, probably most men do not understand the complexity of PCa and the subtleties that may make a treatment more suitable for a particular individual from a clinical aspect. (Even doctors can differ in their assessments which of course makes it even more difficult for the patient). Perhaps a general view may be offered, particularly on the basis of various tables based on averages but a patient may at the extreme rather than in the middle of results. Thus comments by others that imply X is a good treatment for you or Y is not a good treatment for you because those offering such comment had respectively a good or bad experience, should not be taken as necessarily applicable to an individual.

It is true that treatments are improving and taken overall affected men are living longer but sadly not all of them and treatment can cause life changing side effects. So for those who proffer comments such as those you mention and additionally such words as 'if you have to have a cancer PCa is the one to have' trivialize the impact on men that the disease and it's treatment can have.

Barry
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 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 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.

Ido4

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 15 Jul 2018 at 19:00

Hi Rich, don’t take the number of responses you get as some kind of measure of how much people care; it just doesn’t work that way. Yorkhull is one of the kindest cleverest people I have ever known and some of us care deeply about his progress but you will see that few comment on his posts. Likewise, my updates on J and dad produce very little response - it isn’t a popularity vote, simply that sometimes there isn’t much left to say :-/

Edited by member 15 Jul 2018 at 21:40  | Reason: Not specified

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

User
Posted 07 Sep 2018 at 22:03

I've had something of an epiphany this week (again?). I've been feeling good but not in a manic way like I was earlier in the year. I had the second meeting with clinical psychologist at Maggie's today. I just said that I feel that, despite being diagnosed "High grade", "High risk" and having "very aggressive PCa" that I'm ok. I'm sure that I will be fine for at least the next 3 years. I mean no change to condition.

I said today that I felt that I had re-categorised the "Big C" into into the "Little c" and effectively parked it up for the moment. It has been quite empowering for me!. My counsellor was gobsmacked at that and asked if she could quote me on it to other people! I said yes.

When I said to my oncologist after first post treatment consultation that I wasn't happy with men's support group outcome he told me to stop going and get on with life! So I think I will have a break from all this madness and laugh and enjoy life. I;m off to Japan next Friday with work and I may try to dip in and out of this site (but I may not!).

I know I will have the odd bad day but that is life - "Into each life some rain must fall, some days must be dark and dreary" (HWL).

 

Thanks to you people who do such a fantastic job to help men and their partners come to terms with this.

Good-bye for now!

Richard :)

Edited by member 07 Sep 2018 at 22:50  | Reason: Not specified

User
Posted 08 Sep 2018 at 17:11

Good for you Rich. Enjoy your adventures.

Ian

Ido4

User
Posted 09 Sep 2018 at 20:43
Rich , I’ve reported you to the moderators ok. I love a beer too but it’s becoming a regular thing with you to fall out. I was a bit angry when I started for all the right reasons , but at the end of the day we are all really suffering and struggling , but in our own ways yeh !! It’s a free speech forum and abuse of any kind isn’t ok. Just saying ....,,

If life gives you lemons , then make lemonade

User
Posted 19 Jan 2018 at 00:13

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 :-)

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

User
Posted 19 Jan 2018 at 00:21

Just as a point of note, oncologists rarely talk about being 'cured' of cancer - the correct terminology is 'remission'. So while you asked about being cured and he said it was possible (and you are now questioning the reliability of that reply in your mind) he had already told you that he believed RT would give you more than a 50% chance of success .... which is the same as saying 50% chance of remission. Despite your worst fears, that starts to make RT look like pretty good odds.

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

User
Posted 25 Feb 2018 at 10:25
Again I can only share my own experience here, but ever since diagnosis I have accepted that how I feel today is how I feel. I have never felt that I have had to battle anything as to me my cancer is just an illness and to be honest, I find my psoriasis more of a pain.

Looking around I dwell on what I have and what I can do rather than the negatives and having realised how lucky I am my situation is not really a problem. I'm not saying that there haven't been dark days as there have but I am lucky in that I find I can shut the door on them and enjoy life as it is now.

I emphasise that this is just my take on things which doesn't make it right for anyone else.

My advise ? If you feel good just enjoy it the same as you would with any other medical condition.

All the best

Kevan

User
Posted 07 Mar 2018 at 21:36

The known is usually better than the imagined unknown. Glad you have a plan in place

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

User
Posted 10 Mar 2018 at 22:45

It would be interesting and useful to know the details of your dad’s diagnosis, the type he had, his treatment and how long that worked for, as well as how long ago it was. Orchiectomy is rare and never without informed consent. How much do you know?

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

User
Posted 11 Mar 2018 at 15:29
Hi Richard, i think I mentioned in my last post that my hubby worked all the way through his RT for the full 7 weeks. He always went late afternoons and worked in the morning. The hospital was flexible and tried to book him in st the same time every day. The tiredness caught up towards the end it was a good thing we went on holiday. It did him the world of good. He was lucky with HT too. He did go on anti depressants for a while and those helped with the emotional side that he found difficult to deal with. Specially the loss of libido which to him seemed like the end of the world. It’s a horrible journey but you just try to carry on as normal. This forum has helped me. Even being away for 5 years I’m still seeing the same people.

Denise xx

User
Posted 15 Mar 2018 at 17:58

If you are really desperate to get your hands on some Flomax until your problems with the prescription are resolved it is available OTC from chemists or online at at cost of about £8 for a two week supply.

Edited by member 15 Mar 2018 at 20:44  | Reason: Not specified

User
Posted 18 Mar 2018 at 11:47

No, that is referred to as a grade group and is a new measurement not yet used at all hospitals. Your staging is T3b and your Gleason grade is 4+5 and your Gleason score is G9. Your Gleason score puts you into grade group 5 if you happen to be talking to an oncologist that uses the grade group rather than the Gleason.

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

User
Posted 20 Mar 2018 at 11:30

I don't see the problem. You have been offered curative treatment because they believe it has a chance of working. Why would you reject that and opt instead for a holding treatment that will eventually stop working and lead to early death? It seems like a no brainer to me.

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

User
Posted 20 Mar 2018 at 16:36

Hi, Rich
I had T3b and Gleason 9 and PSA=19 and was told that it was not a good idea to have an operation in the sense of cutting. But I did have Brachytherapy and now I seem to be clear, although still on check ups. So that's an initial big zap of radiation and then regular radiation for about 5 weeks, followed by the dreaded Zoladex for two years. Its a good treatment: about 80-90 % survival after 5 years (read the papers, being an inquisitive old f).
"Castration" is only temporary: once Zoladex is stopped, so does its depressive effect, and testosterone and sex drive comes back, with sort of not bad dry orgasms. Still waiting for the erectile disfunction to stop (double negative). But, can't have everything.

I think all us heroes have copying strategies. I have my own internal fear/anger/sadness chart. My trick is simple to acknowledge which I am are feeling. I got sad mostly, a bit less recently.

User
Posted 22 Mar 2018 at 19:45

It is an actual treatment choice - RP with RT or RP with RT/HT - and we have members for whom that has been the recommendation. But in those cases it would be referred to as ART (adjuvant) not SRT.

It wasn't offered to you - I suspect this is due to the proximity to the bladder rather than anything else but you could ask about it. Not a popular choice due to the double side effects.

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

User
Posted 22 Mar 2018 at 21:47

Easily said but much more difficult to do. It would be difficult to know where to stop. The Prostate is a complex organ to remove in it's entirety and this would be tantamount to a full prostatectomy. Certainly nerve bundles can be left if not invaded by cancer but where they are if left where there is cancer, the operation would seem to lose it's advantage and it is doubtful the surgeon would agree to do the op with such limiting restrictions.

Your thread is titled "Told operation is too risky"!?

Edited by member 22 Mar 2018 at 21:52  | Reason: Not specified

Barry
User
Posted 23 Mar 2018 at 00:22

Ah okay - big brother wants it to go away and perhaps is stuck in 'if I was you I would just get rid of it' mode. Fortunately, your specialists know a bit more than your brother does but you can't blame him - especially if he knows of people who have supposedly had the op and ''been fine'. We had this problem with a brother-in-law when John was diagnosed - his 90 year old dad had PCa years ago and 'was fine' so he couldn't really see why we were upset. The trouble is that men don't often talk about the detail to others and they look fine so living with incontinence, permanent bladder damage, potential lifelong self-catheterisation etc (which your surgeon seems to think you would be at increased risk of) may not be fully understood by your brother.

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

User
Posted 24 Mar 2018 at 21:24

Yep

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

User
Posted 26 Mar 2018 at 22:51
Hope all goes well with the treatment. I was driving a round trip of 94 miles a day for my RT with no problem but it depends on how you feel. If fatigue starts to kick in then you could be unfit to drive which would be an offence and so you need to monitor that. The treatment itself didn't cause any driving related problems but you need to just be sensible.

Kevan

User
Posted 27 Mar 2018 at 14:09

Hi Rich
My drive to the RT was about 3/4 hr from work depending on traffic. The RT wasn’t the same time every day, some days I drove back to work, others I’d drive straight home which added another 1/2 hr to the journey. Never had any problem, but like Ray I always went to loo after the RT.

Stu

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 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.

Ido4

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 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 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 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 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 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 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 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

Ido4

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

Ido4

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

I hope the remaining RT sessions go well.

Ian

Ido4

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! !).

 

User
Posted 24 Jun 2018 at 07:28

Do you not have specialist prostate nurses at your hospital. We have 2 and they will phone , stop , talk and listen. And they can relay info to the Onco if you don’t have time at the appt. Or the nurses on here mate. They not consultants but they know all the ins and outs of treatments. I get the 51 thing as I was 51 lost month also and have asked for my specialist nurse to be at my OOnco appt next Friday with an incurable psa expected to be around 50. I’ve asked him to come along as I’m at the point where I may seriously reject further treatment at all. I’m 3 yrs on from surgery but am bipolar and despite many good times , my life is overall bad and surrounded with guilt over my ability as a father husband lover , and I’m basically just pretty damaged all round with a strong liking for booze and escape.
BUT your path at the mo is still different. I’m sure RT side effects pass by and lots of men now ok. ED can follow later but as we all know this cancer causes life changing issues however you tackle it. Don’t give up ok brother.

Edited by member 24 Jun 2018 at 07:47  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 15 Jul 2018 at 08:23

Good morning  Rich

Thanks for replying. 

Sometimes the problem with written responses is that they can be difficult to interpret as you can't hear the tone of voice or see the visual cues that we normally use. This can lead to misunderstandings which may have happened here.

Like you I am a Gleason 9 T3b but I am possibly more fortunate in that I am 69 and so the future is not quite such a worrying place to contemplate. I have no children and so I do not have that extra burden of responsibility all of which makes it harder for  me to help you as I am not walking this path in your shoes.

What I would ask is that you make the most of each day as regardless of PCa none of us knows how long we have so wasting today worrying about tomorrow robs you of precious time.

Today I shall be driving from Swindon to Dartmoor to drop off students at the start of their Duke of Edinburgh Gold expedition and then I shall drive back. I am looking forward to it. I can't do the pick up on Thursday as I shall be on my way to Canada to visit friends.

I am just trying to say that we share the same diagnosis and with support from family and friends we can simply carry on carrying on until that ceases to be an option.

In the meantime you are still Rich I'm still Kev the difference is that we know we have PCa.

I sincerely hope this isn't the last I hear from you but I respect your decision about that.

My very best wishes to you and your family.

Kevan 

Edited by member 15 Jul 2018 at 08:24  | Reason: Spelling error

User
Posted 15 Jul 2018 at 10:36
I don’t think people are ignoring you Rich. The site has changed quite a lot and is transitional as new people join all the time. I suppose I was a big hitter when I joined three years ago. Just as panicked as you I was. I’m 51 and G9T4N1MxR1.

I too have been told I won’t reach 60. Maybe only 56. I’ve actually accepted all this and have still refused RT for a fourth time. Maybe I’m stupid but I’m just living and enjoying QOL whilst I can. My own choice. I don’t post as much as quite frankly coming on the forum can be very depressing and lower my mood. Do you want to speak to someone ? ( me ? ). I’ll help if I can

If life gives you lemons , then make lemonade

User
Posted 15 Jul 2018 at 11:23
Well done. When I first joined the site I had a different post. It was something like Help , any advice welcome. I was ranting and panicking and denying and threatening suicide , rejecting surgery etc etc etc. Sounds a bit glib but acceptance will come in time. It doesn’t make everything right but it makes things easier. My best suggestion to you is to find a good councillor and see them weekly. Ok it costs me £40 a pop but worth its weight in gold. Don’t give up mate please don’t. You have to try and make the most of every day. Concentrate on Now and not the Future. It really helps.

If life gives you lemons , then make lemonade

User
Posted 15 Jul 2018 at 13:59

Hi Rich, I have always rend your posts with interest and tried to answer when I was able.

I also have a very uncertain future due to the pathology of my disease and how quick it returned after prostatectomy.

It is very difficult dealing with the uncertainty.

I would particularly endorse what Kevin has saying about the written responses. You have no visual cues etc. 

This makes misinterpretation very easy.

We used to have issues at work with people falling out over misinterpreted emails.

I for one decided to discuss things face to face which was much better.

I realise this isn’t possible here.

I would also endorse what Chris and Kevin have said about livng each day to the best.

It would be a real shame to lose you from the site, I see you and the others here like family as we all are travelling the PC road. There is an understanding here that you won’t get elsewhere.

Take care, Ian.

 

Ido4

User
Posted 15 Jul 2018 at 18:50

HI Rich

Just got back from Dartmoor and so pleased to see the responses you have had and great news that you will stick with this strange and varied community.

Made my day - so keep talking to us.

All the best,

Kevan 

User
Posted 15 Jul 2018 at 19:35
Lol , you know well ,-)) x

If life gives you lemons , then make lemonade

User
Posted 15 Jul 2018 at 23:12
Night night
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2018 at 23:22
Which bits hadn’t been explained to you?

Definitely affected your treatment options. PNI identified at biopsy is associated with poor outcomes from surgery. 70% in cores is rather high and often that is associated with positive margins. PIN is cancer waiting to happen.

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

User
Posted 13 Aug 2018 at 18:02
Brilliant news :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2018 at 22:30
Great stuff Rich!
User
Posted 14 Aug 2018 at 16:48

Great news Rich.

Ian

Ido4

User
Posted 14 Aug 2018 at 17:02
Chuffed for you Rich !

If life gives you lemons , then make lemonade

User
Posted 20 Aug 2018 at 19:57
Great news Rich.

I have just completed my 37 fractions on Friday 17th August not due for my review until October

User
Posted 20 Aug 2018 at 20:15

That's great news Rich. Well done.

Kind regards

Kevan 

User
Posted 08 Sep 2018 at 09:37
Well done!

The proportion of the battle that must be fought in the mind should never be underestimated and it seems you have won an important victory in yours.

Nick

User
Posted 08 Sep 2018 at 10:32
Fab post.. very positive and great to read.

Enjoy Japan and life!

Regards

Clare

User
Posted 08 Sep 2018 at 17:42

Hi Rich 

This is great news and I am so pleased for you.

Enjoy Japan. 

Kind regards

Kevan 

User
Posted 09 Sep 2018 at 07:05
Hi Rich good news,

it is now 13 years since Tony first went to the drs about his problem with his wee spraying and being slow, Gleason 9 T3B spread to seminals very aggressive he was 60 at the time, roll forward 13 years he is still here and still fighting it, no pain no anything really he gets tired more but he is now 73. good luck with your journey.

regards barbara

User
Posted 09 Sep 2018 at 12:07
Thank you so much for that Barbara, I 'll try to keep little c in the back of the cupboard until at least 2030 then!!!

Richard, xx.

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User
Posted 13 Jan 2018 at 14:43

The other way of looking at it is that you could have had the op, suffered all the side effects and then discovered it hadn’t worked and you need salvage RT/HT anyway. That happened to my husband (he had a 55% chance of recurrence but didn’t really understand at the time what that meant) and he has very much regretted rushing into the surgery as it is so hard to live with the long term effects.

The other thing to consider is that with the RT/HT you have a better than 50% chance of getting to full remission :-)

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

User
Posted 13 Jan 2018 at 18:10

Hi Rich
Check my profile. I was similar to you in all stats. They gave me the op and then found I was G9 T4 N1 with 5 lymph’s cancerous out of 18. The post op results were tragic psa wise and I detested the 2 yrs of ED. I was only 48. I think Lyn is right ( she usually is ) and the best course is a damn good bout of RT to knock it back. Best of luck

If life gives you lemons , then make lemonade

User
Posted 13 Jan 2018 at 18:57
Hi Rich,

My husband was G9 T3B N0 M0 he has HDBrachytherapy then 5 weeks of RT, he will be on Prostrap until June 2018 his PSA has been undetectable for the last year <0.1

He is happy with his decision, regaining his strength and managing the side effects of the HT reasonably well. He has no libido, gets the occasional hot flush, and the odd day of tiredness.

Our lives have changed, physically emotionally and socially. We are the same people readjusting our lives to make the best of something we did not want, this bl##dy disease is something none of us want.

What we do want is quality of life, enjoyment, health and happiness, we will not let this disease get the better of us. We hope he does not have to have further treatments, and he’s been given the old stats of a 50/50 chance of remission. I’m no medic or mathematician but even I can work that one out. A medical friend has told us that usually oncologists are a conservative bunch, so I’m hoping she is right.

He is older than you at 67, fairly fit, still running a small holding and playing as a muzo every day ( at home) so it’s not all doom and gloom, though we both fall into the emotional black hole sometimes, but make sure we drag ourselves out, cos it’s not a good place to be.

Research ask questions and use this site, it has been a place of great support for me.

Leila

User
Posted 17 Jan 2018 at 09:47

Hi Rich
I had a similar diagnosis to you. T3b N1 M0 Gleason 9 (5/4) two years ago. I was devastated.
I was immediately put on hormone therapy tablets. (This shrinks the tumour)
The oncologist offered HD Brachytherapy and 3 week external beam radio therapy to occur at least 3 months after the start of hormone therapy. I was not given another option.

The oncologist told me 1 in 3 cure with 2 in 3 survival in 10 years. My view was that theses statistics are for the whole age range, I was relatively young (56) and fit, which I am guessing you are, and so I my outcome is likely to be better. I think the same applied to you In addition I agree the oncologist with Leila's friend oncologists will tend to be conservative

Good luck

Bill

User
Posted 17 Jan 2018 at 18:41

Hi Rich, sorry you couldn't have op. My husband had the robotic surgery last Friday and got out Sunday. He is doing remarkably well in the recovering at home but finding the catheter difficult to have. He also has to wear the stockings for 6 weeks and inject himself for a month.

He will get over the surgery but there are no guarantees that he will not also need radiotherapy, he is also still on the hormone tablets.

It was his decision to go for this simply because he felt it was being taken away and he had that option. The incontinence once the catheter is taken away is unknown as yet and he knows it could be long term.

I think you just have to go with the options offered to you and trust the doctors.

Think he still has a lot to cope with but we just live day to day and hope for a brighter future.

User
Posted 17 Jan 2018 at 21:45

Good luck for tomorrow Rich.

Hope it goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 17 Jan 2018 at 22:11

Probably 37 sessions (called fractions) 7 weeks & 2 days. Normal RT process is 37 fractions at 2Gy each - a total of 74Gy although some oncologists now do 20 fractions at 3Gy or 3.2Gy which has the same cumulative effect. So I am thinking that 37 and 74 got combined in your head as 77????

You and 3 brothers - I feel almost sorry for the oncologist. Did he tell your brothers that they all need to get their PSA measured?

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

User
Posted 19 Jan 2018 at 00:13

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 :-)

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

User
Posted 19 Jan 2018 at 00:21

Just as a point of note, oncologists rarely talk about being 'cured' of cancer - the correct terminology is 'remission'. So while you asked about being cured and he said it was possible (and you are now questioning the reliability of that reply in your mind) he had already told you that he believed RT would give you more than a 50% chance of success .... which is the same as saying 50% chance of remission. Despite your worst fears, that starts to make RT look like pretty good odds.

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

User
Posted 25 Feb 2018 at 08:49
Hi Richard

I am afraid that I don't have the necessary knowledge to offer any answers to points 1 and 2 above.

With regard to the charity offering hospital transport that is something that goes on in different parts of the country. In our area it is The Link and I volunteered as one of the drivers when I retired. Patients simply made a donation of what they could afford. Without this service there would be many people unable to get their treatment.

Regarding your work in Japan I would have thought that your HR department should be fully briefed about your medical status so that should you go there are plans in place should there be a problem. I don't see why there should be any problem but if there is a plan already agreed then job done.

All the best

Kevan

User
Posted 25 Feb 2018 at 10:25
Again I can only share my own experience here, but ever since diagnosis I have accepted that how I feel today is how I feel. I have never felt that I have had to battle anything as to me my cancer is just an illness and to be honest, I find my psoriasis more of a pain.

Looking around I dwell on what I have and what I can do rather than the negatives and having realised how lucky I am my situation is not really a problem. I'm not saying that there haven't been dark days as there have but I am lucky in that I find I can shut the door on them and enjoy life as it is now.

I emphasise that this is just my take on things which doesn't make it right for anyone else.

My advise ? If you feel good just enjoy it the same as you would with any other medical condition.

All the best

Kevan

User
Posted 25 Feb 2018 at 15:09

Hi Richard

Re your last post on your state of mind, there is no reason why you shouldn’t feel anything but well.
I’m T3b I have had RP & RT plus various types of HT almost everything other than Chemo. It’s now 12 years since I was first diagnosed. I’m a tad older than you, but I can honestly say that I have never felt anything but well the whole 12 years. Just stay positive, don’t let the b***ger get you down.

I’m also an engineer and a Geordie. I have traveled all over the World regardless of my Pca. But I’ve never been to Japan, but aways wanted to, still do.

Stu

User
Posted 02 Mar 2018 at 21:15

Was it a failed attempt at humour or just crass?

When John was diagnosed, one of his staff would not enter his office - he would hover at the door if he needed to ask or discuss something. J eventually said "it's okay - you can't catch it" to which the response was "well you can't know that for sure"

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

User
Posted 07 Mar 2018 at 21:36

The known is usually better than the imagined unknown. Glad you have a plan in place

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

User
Posted 07 Mar 2018 at 22:23

😂

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

User
Posted 08 Mar 2018 at 00:17

Your imagination is running wild Rich - no-one can feel their cells mutating!

If you have started the hormone treatment, it is more likely to be your pelvic muscles and tendons - your pelvis may loosen a little on the HT in similar way to a girl reaching puberty starts to get hips or a pregnant woman's pelvis spreads in preparation for childbirth.

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

User
Posted 08 Mar 2018 at 17:34

Perhaps you are drinking at a sensible level and getting nowhere near hangover territory. I hope so for your sake. Not too much to celebrate in the Six Nations for me yet!

AC

User
Posted 10 Mar 2018 at 07:57
Hi Richard, In answer to your question about hormone therapy and the 1 monthly and 3 monthly injections. In my husbands experience he sailed through the one monthly injections before his gp talked him into the three monthly ones. He only had that one once and reverted back to the monthly ones as side effects came in thick and fast. Flushes, feeling lousy in himself, emotionional. When back on the one monthly injections he was much better. I imagine it depends on the individual.

Wishing you well Richard for your RT. Hubby was young too when he had it. He worked in the morning and had RT in the afternoon. It wasn’t until towards the end of the treatment that he became extremely tired. At that time he had his last treatment on the Tuesday and we went on a cruise on the Friday.

Stay positive every step of the way

Denise x

Edited by member 11 Mar 2018 at 19:46  | Reason: Not specified

User
Posted 10 Mar 2018 at 21:22

1) one of the lucky guys
2) not on HT long enough for side effects to kick in yet
3) HT is not dropping T to circa castrate level - might be worth a check

Ray

User
Posted 10 Mar 2018 at 22:00

3 months / 12 weeks is not the norm for everyone in every circumstance. Some men will prefer to stay with monthly / 28 day injections so that if the side effects are bad, it takes less time to get out of the system. Some oncos prefer to use the monthly or 4 weekly dose rather than the 3 monthly / 12 weekly one - but the 3 month / 12 weeks is cheaper for the NHS.

Castration - the type of HT you are on is designed to stop all production of testosterone, which put another way is to castrate you. Before we had HT, men had their testicles removed to effect the same result. This option is still used in some circumstances - for example if the man does not want or cannot tolerate the hormones. We have a couple of members who have had surgical castration rather than chemical - and it is still quite common in some overseas nations. Your dad may have chosen to have orchiectomy because he didn't want to take hormones or perhaps because he reacted badly to them. I don't think men grow breasts after surgical castration. Your dad's cancer must have been a particularly aggressive kind or the cancer had already learned how to survive without testosterone (perhaps because he had been on HT previously?) - this is called being castrate resistant. It is also possible that he had a rare type that doesn't depend on testosterone anyway.

Ray is right though - if you don't start to get some side effects in the next month or so it might be a good idea to ask for a testosterone check with your next blood test, just to be sure that you are below castrate level. Who gives you the injection?

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

User
Posted 10 Mar 2018 at 22:26

Richard
HT is chemical castration.

Some guys who can't get T to castrate level (0.69) also report none or little HT side effects. Is there a connection or are they able to tolerate (lucky was a bad choice of word) HT well?

Did your dad have orchidectomy by choice or because his HT wasn't working as effectively as hoped.

Most likely HT is working fine it but worth a check due to your dad?

Ray

User
Posted 10 Mar 2018 at 22:45

It would be interesting and useful to know the details of your dad’s diagnosis, the type he had, his treatment and how long that worked for, as well as how long ago it was. Orchiectomy is rare and never without informed consent. How much do you know?

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

User
Posted 10 Mar 2018 at 23:36

I appreciate why. In my time at diagnosis thus possibly in your dad's time once HT stopped working there wasn't, other than adding Casodex for a short time, any more drugs of note in the box. Thus Orchiectomy was seen as an option to try to extend life. Sounds harsh but that's all there was.

HT then had an effective working guide time of 3 years (although many guys sailed past that).

For some guys HT didn't work anywhere near that time, if at all.

Knowing which group your dad fitted into could give a guide to your type of PCa.

Ray

User
Posted 11 Mar 2018 at 15:29
Hi Richard, i think I mentioned in my last post that my hubby worked all the way through his RT for the full 7 weeks. He always went late afternoons and worked in the morning. The hospital was flexible and tried to book him in st the same time every day. The tiredness caught up towards the end it was a good thing we went on holiday. It did him the world of good. He was lucky with HT too. He did go on anti depressants for a while and those helped with the emotional side that he found difficult to deal with. Specially the loss of libido which to him seemed like the end of the world. It’s a horrible journey but you just try to carry on as normal. This forum has helped me. Even being away for 5 years I’m still seeing the same people.

Denise xx

User
Posted 15 Mar 2018 at 12:45

The GP needs a letter from your specialist - or the specialist needs to write the prescription. Perhaps phone your oncoglist's secretary and ask him/her if they can sort it out for you. Frustrating but that is how our NHS works now - if someone wants you to have meds, it needs to come out of their budget rather than the GP's budget.

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

User
Posted 15 Mar 2018 at 17:58

If you are really desperate to get your hands on some Flomax until your problems with the prescription are resolved it is available OTC from chemists or online at at cost of about £8 for a two week supply.

Edited by member 15 Mar 2018 at 20:44  | Reason: Not specified

User
Posted 18 Mar 2018 at 00:39

Cancer only has 4 stages. What do you mean by 'it's now grade 5'? Where is it written or in what context were you told this? Could it have been said in the context of your mpMRI result, which comes in 5 grades? Or was it referring to the fact that you have some 5s in your gleason score?

Your results in terms of T3b or whatever are determined by all your results, not just your Gleason.

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

User
Posted 18 Mar 2018 at 11:47

No, that is referred to as a grade group and is a new measurement not yet used at all hospitals. Your staging is T3b and your Gleason grade is 4+5 and your Gleason score is G9. Your Gleason score puts you into grade group 5 if you happen to be talking to an oncologist that uses the grade group rather than the Gleason.

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

User
Posted 18 Mar 2018 at 19:10

Your grade and stage is whatever your onco says it is, depending on which scale s/he uses 😂 If you over complicate things, you will end up confused or anxious when your nurse specialist says something different or a GP letter says 3 with no context.

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

User
Posted 18 Mar 2018 at 20:59

It is just a quirk of the site - it moves to British Summer Time about 10 days early every year - all will be well again after next Sunday.

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

User
Posted 20 Mar 2018 at 11:30

I don't see the problem. You have been offered curative treatment because they believe it has a chance of working. Why would you reject that and opt instead for a holding treatment that will eventually stop working and lead to early death? It seems like a no brainer to me.

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

User
Posted 20 Mar 2018 at 16:36

Hi, Rich
I had T3b and Gleason 9 and PSA=19 and was told that it was not a good idea to have an operation in the sense of cutting. But I did have Brachytherapy and now I seem to be clear, although still on check ups. So that's an initial big zap of radiation and then regular radiation for about 5 weeks, followed by the dreaded Zoladex for two years. Its a good treatment: about 80-90 % survival after 5 years (read the papers, being an inquisitive old f).
"Castration" is only temporary: once Zoladex is stopped, so does its depressive effect, and testosterone and sex drive comes back, with sort of not bad dry orgasms. Still waiting for the erectile disfunction to stop (double negative). But, can't have everything.

I think all us heroes have copying strategies. I have my own internal fear/anger/sadness chart. My trick is simple to acknowledge which I am are feeling. I got sad mostly, a bit less recently.

User
Posted 21 Mar 2018 at 22:45

I was told BrachyT not an option due to spread so my realistic option is where I'm going.
I STILL haven't received Flomax prescription!!!!!!!! I rang again on Friday but pathetic response!! 2 weeks since onco recommended using it?

User
Posted 22 Mar 2018 at 19:45

It is an actual treatment choice - RP with RT or RP with RT/HT - and we have members for whom that has been the recommendation. But in those cases it would be referred to as ART (adjuvant) not SRT.

It wasn't offered to you - I suspect this is due to the proximity to the bladder rather than anything else but you could ask about it. Not a popular choice due to the double side effects.

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

User
Posted 22 Mar 2018 at 21:47

Easily said but much more difficult to do. It would be difficult to know where to stop. The Prostate is a complex organ to remove in it's entirety and this would be tantamount to a full prostatectomy. Certainly nerve bundles can be left if not invaded by cancer but where they are if left where there is cancer, the operation would seem to lose it's advantage and it is doubtful the surgeon would agree to do the op with such limiting restrictions.

Your thread is titled "Told operation is too risky"!?

Edited by member 22 Mar 2018 at 21:52  | Reason: Not specified

Barry
User
Posted 22 Mar 2018 at 22:09

Ah sorry - I misunderstood the question. I thought Rich was asking whether there was any benefit in having RP knowing that RT will still be needed.

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

User
Posted 23 Mar 2018 at 00:22

Ah okay - big brother wants it to go away and perhaps is stuck in 'if I was you I would just get rid of it' mode. Fortunately, your specialists know a bit more than your brother does but you can't blame him - especially if he knows of people who have supposedly had the op and ''been fine'. We had this problem with a brother-in-law when John was diagnosed - his 90 year old dad had PCa years ago and 'was fine' so he couldn't really see why we were upset. The trouble is that men don't often talk about the detail to others and they look fine so living with incontinence, permanent bladder damage, potential lifelong self-catheterisation etc (which your surgeon seems to think you would be at increased risk of) may not be fully understood by your brother.

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

User
Posted 24 Mar 2018 at 21:24

Yep

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

User
Posted 25 Mar 2018 at 02:05

Many, probably most men do not understand the complexity of PCa and the subtleties that may make a treatment more suitable for a particular individual from a clinical aspect. (Even doctors can differ in their assessments which of course makes it even more difficult for the patient). Perhaps a general view may be offered, particularly on the basis of various tables based on averages but a patient may at the extreme rather than in the middle of results. Thus comments by others that imply X is a good treatment for you or Y is not a good treatment for you because those offering such comment had respectively a good or bad experience, should not be taken as necessarily applicable to an individual.

It is true that treatments are improving and taken overall affected men are living longer but sadly not all of them and treatment can cause life changing side effects. So for those who proffer comments such as those you mention and additionally such words as 'if you have to have a cancer PCa is the one to have' trivialize the impact on men that the disease and it's treatment can have.

Barry
User
Posted 26 Mar 2018 at 04:05

There is something of which I am certain and that is that although even timely treatment does not always provide a 'cure' PCa but it often slows down it's advance, the price you pay in terms of time, undergoing the treatment which may be ongoing and the side side effects. Some will think at some point that the price is too high, a decision many of us will have to make but others may decide a longer if less active extended life is worthwhile. Death due to PCa is often a rotten way to go and I for one would rather another was the reason, more likely to be the case as we grow old.

Barry
User
Posted 26 Mar 2018 at 22:51
Hope all goes well with the treatment. I was driving a round trip of 94 miles a day for my RT with no problem but it depends on how you feel. If fatigue starts to kick in then you could be unfit to drive which would be an offence and so you need to monitor that. The treatment itself didn't cause any driving related problems but you need to just be sensible.

Kevan

User
Posted 27 Mar 2018 at 09:26

Urgency can be an issue as the weeks go by. Hence some guys carry a bottle in car to pee in. Not sure how "Daft as a brush" would feel about peeing in their car -:) I went though RT no prob, no bottle needed just a had pee before I came out. Should be less of an issue now targeting has improved.

Ray

User
Posted 27 Mar 2018 at 10:20

I have a German Shepherd Dog who is a “cryptorchid”, i.e. has an undescended testicle. This and his other one will have to be removed shortly as the hidden one may well become cancerous.

I was intrigued to see in America some vets offer their castrated patients silicone “Neuticles” - cosmetic testicle implants, in five sizes from Chihuahua to Great Dane, purely for the vanity of their owners!

I have never heard of it for humans until I read this thread.

Something new every day.

User
Posted 27 Mar 2018 at 14:09

Hi Rich
My drive to the RT was about 3/4 hr from work depending on traffic. The RT wasn’t the same time every day, some days I drove back to work, others I’d drive straight home which added another 1/2 hr to the journey. Never had any problem, but like Ray I always went to loo after the RT.

Stu

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

Ido4

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 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.

Ido4

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

 
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