Decisions

Hello again Safeways . Quality of life is a very important part of the equation which only you can decide to put above potential quantity but there are two aspects to the treatment you have been offered. The hormone therapy should have put the cancer into hibernation and shrunk the tumor making a smaller target for the radiotherapy. How long you have the hormone therapy for is based on trying to provide the optimum results bearing in mind that radiotherapy can continue working to kill the cancer for 18 months after it has been administered. With the T3A you have a potentially curable cancer with the curative bit being done by the radiotherapy which is the easier part of the treatment although I understand you are going to have to stay away from home for 4 weeks to do this which is not nice. My husband had 7 weeks of radiotherapy which meant that we also had to stay away but we got into a routine and the time passed a lot quicker than expected. No one can make you have the hormone therapy if you feel that you cannot live with the side effects but maybe you could talk to the experts about changing to a tablet form which stays in the system for a shorter period of time and works in a different way to the triptorelin which might help. You also have the option of just having the curative radiotherapy and discontinuing the hormone therapy completely in the knowledge that this is sub optimal but better than doing nothing. 

As far as percentages go, a lot of the statistics, by nature, are retrospective and the treatments have improved considerably over recent years.

I am a little confused about the PSA comment. The PSA is normally checked 3 months after initiating hormone therapy to ensure that it is working to reduce the testosterone levels, and thus the PSA, in the body and then to produce a baseline figure before starting radiotherapy. Once you have had radiotherapy then it is used to monitor how well it is working, usually every 3 or 6 monthly for a period of 2 years. From then on it would normally be annually. The aim is to get the PSA to a negligible reading after treatment and to keep it there. If this is not achieved then a closer monitoring might be necessary as it is more likely that a recurrence might occur at some point in the future which is better dealt with sooner rather than later in order to keep you on the curative pathway.

You can live for some time without treating T3A prostate cancer but it will eventually spread and you have to weigh up how you would deal with this mentally.

Please don't shut any doors at the moment until you have explored all your options and are able to come up with a solution that you can live with. 

Hi Safeway 

Sorry to hear.

I presume the cancer is just outside the gland but nowhere else like seminal vesicles etc.

As u have been on HT for nearly six months and about to start Radiotherapy 

I would see if u can reduce the time on HT afterwards ok, potentially a bit of a gamble but I always get the impression that no one really knows how long HT should be for and really it's a belt and braces job.

Don't understand about the Dr saying doesn't do PSA , after my Radiotherapy I relied on GP for PSA testing. I would query that again.

Best wishes 

Steve 

Hi Safeways sorry to hear you are struggling with current treatments.  You have had 2 excellent posts already.  I fully understand the quality of life argument and having been on HT for years I am lucky able to tolerate it.  I am not on a curative pathway but still feel that treatments offered are better than the alternative.  I am 75 so understand your dilemma that a slow growing cancer might not become a problem for years, but I have known too many people who have refused treatment only to regret it later.  Like Alwayshope said, don’t limit your options unless you are very clear of the decision you are making.

I haven’t heard of an upset stomach being associated with HT and it isn’t listed as a byproduct on my own HT (Zoladex).  I just wonder if that isn’t actually HT related but some other cause (maybe stress?).  It might be worth a separate investigation or discussion with your GP or oncologist.  As for RT, yes it does make you tired but in my experience very slowly and I had 37 sessions which was quite draining. 20 sessions will be over in no time and you might be cured.   I don’t know how fit you are and I think that has a large part to play in how we react to treatment.  Obviously having a sore hip will have restricted you, but the more exercise you are able to do, the better you will feel (but listen to your body).  Good luck with whatever path you decide to take, and please come back if you need anything or have any other questions.  David

Thanks for all the replies, my moods seem to go up and down, yesterday I was at an all time low, feeling better today, especially with the above posts, both my hospital and doctor told me routine testing was not one of the things the NHS does, I rang my GP at three months and was told that it would be checked until I had finished radiotherapy. I would have thought that along with the injection there would have been something for the patient about it.

I don't think I have mention it but when visiting the Urologist for the results of the biopsy I was told that most men don't want to live past 80.

I am the longest living member of a big family, 9 of us,  only my youngest sister is still alive at 62.  My youngest brother died at 65, the the oldest of the other 7.

I often wonder what I have done to get to this age, a butcher, engineer on a small yacht building yard, joined the army twice, worked as a under manager on a ski lift, started riding motorcycles at 13 and still ride one, hill walker and  climbed till I was in my early 60's, married with three boys and two grandsons, very active untill the visit to the doctor after falling down icy steps earlier this year.

My planning visit this Thursday will I hope sort out a lot of my worries, as I said above thank you for your supportive comments, I'm British, stiff up lip, head held high, so hopefully my Radiotherapy won't be the bogey man that have made it seem, thanks.

All the best for Thursday and I am sure you will find it easier than anticipated. All the radiographers who dealt with my husband were brilliant at putting him at ease and encouraging him through the treatment. It is important to inform them of any issues you have with the bowels or bladder whilst you are having treatment as they have many tools to ensure that you maintain a good quality of life.

I have attached a link to Macmillan about PSA testing after treatment so don't be fobbed off and push for regular testing.

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/follow-up-after-treatment-for-prostate-cancer

I take it the Urologist was a whippersnapper. My husband is now 81 and still determined to enjoy life even though he has advanced prostate cancer.

Hello safeways, sorry to hear about your dilemma. My husband was 75 when diagnosed T3a N0M0 Gleason 4+3 =7 . I had no doubts about him having treatment. He was adamant about not wanting surgery. When it got to the planning appointment for RT he suddenly announced that he was withdrawing from treatment because he was fed up of ‘all the messing about’! I was devastated - even more so when I asked where I fitted into this decision and his reply was ‘nowhere, it’s my body!’ Suffice it to say, we had ‘words’! I said, ‘At T3a you are curable but leave it much longer the cancer will spread and you will have lost the chance of a cure.’. I think you can see the similarity.

of course, nobody can or should make you do something you don’t want to do with your body! It is a very personal choice. I hope you have the strength, wisdom and support from your medical team and your family to make the right decision for yourself. I didn’t have the strength to let my husband make the ‘no treatment ‘ decision without putting up an argument. I didn’t want to watch him die!

Hi all,

My planning appointment was okay but not as involved as I thought it would be, an enema, drink 300mm water,wait 30 minutes then scan, bladder not big enough, drink another 300mm wait 30, another scan, no markers or tattoo, they lined me up with lasers, finished, gave me dates, accommodation booked,  staff very understanding about my fears and  worries, visited Maggie's with wife and had long talk with a nurse who also gave me lots of reassurance, many thanks to them all.

I have been given  start date in November, same time every day.

I have arrived home, took nearly 3 hours in the dark with heavy rain, absolutely done.

Having to watch what I eat is a pain and I have yet to manage two litres of water a day, come close to it, but I have to get up for the loo at least four or five times a night which doesn't help with my hormone messed up head, Dr gave we sleeping pills which certainly put me to sleep but they haven't stopped my nocturnal wanderings down the stairs to the loo, just scared me a bit because my legs were wonky/wobbly, I don't want to fall down more steps, just in case they might find something else to scare an old man with.

Many thanks for for all the kind words and support today, I'm looking forward to the radiotherapy and the future. 

Cyril

Hi Cyril (Safeways ), glad your planning session went ok although a very long day.  Interesting no little dots (tattoos) to line you up but perhaps that is something new.  Anyway, all set for RT.  I understand about wanting a good nights sleep, but sleeping pills and going down stairs are not a good combination.  Are you able to pee in a pot or bottle to save the stairs? I took an old 4 pint plastic milk bottle in the car to RT after once having been caught short in a traffic jam going home.  Great that you have got regular times for the sun bed so hopefully you will get into a good routine with fluids and solids!  Please come back if you have any concerns.  Best wishes, David

Hello Cyril

im pleased to hear that you obviously got the support you needed at your planning meeting. It sounds very much as if you, like us, have a difficult journey to the hospital? At the time, my husband’s head was ‘all over the place’ and I didn’t feel he could cope safely with driving himself there. I drove him but that took its toll on me such that our daughter used a weeks holiday to give me some respite from the driving. We did look into staying in a hotel in the city but, at the end off the day, my husband said he just wanted to be at home.

So, we just plodded on through 4 weeks of RT . We took on board every bit of advice we were given. The staff asked him regularly if he was experiencing any niggles etc and they always responded with sound advice.

Re your nocturnal ‘wandering’ and sleeping tablets. The diagnosis with all its accompanying anxieties totally messed up my sleep and it’s never really settled down. I asked about sleeping tablets and I was told: 1) they are habit forming 2) they increase the risks of falls and serious damage - especially in the elderly 3) they increase the risk of dementia - so, no, they cannot be prescribed. 

We bought a urine bottle with a cap on it from Amazon for about £3. My husband never needed it but did experience some urgency so it travelled with us in the car ‘just in case’

so, 2 years from diagnosis, where are we now? Relieved to have the ht and rt behind us, getting on with life in the sure and certain knowledge that we have done the best we can to tackle the cancer for the time being at least, but, like everybody here, anxious about the possibilities of getting worrying PSA results . The cancer therefore sits in the corner of the room but we make sure it’s got its back to the room and we can ignore it as much as possible! 

I hope all goes well with your treatment and please let us know how things go !

What sleeping tablets did the Doc give you?  I'm looking for one that works well.