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PC update before RT starts

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User
Posted 26 Mar 2016 at 13:29

I've had second thoughts on whether to post this or not, but as I have had so much help from this Forum maybe my comments will help someone else. Here goes....


Treatment
I was diagnosed about a year ago, PSA 37, Gleason 5+4, T3b, M0, N0. A big shock and life changing event. 3 options: do nothing and have about 18 months; or take the treatment; or treatment plus self help. Discussing this with my speciality nurse and took the last option. Also advised about Prostate Cancer UK and my local support group PCaSO. I spent the next month or so doing research, talking to people and reading the forum. All a massive help. Also had a lot of support from family and friends. It's good to know that you are not alone in this.


Treatment started with Zoladex hormone therapy. PSA came down and when less than 1 able to start radiotherapy. Side effects have been manageable, only hot flushes, tiredness and some muscle loss.


I have joined the STAMPEDE trial, this is really worthwhile as I have a second speciality nurse who monitors me every month from a blood test. Not fun but reassuring to know that the test results are all positive, not just for PSA and testosterone but liver and kidney functions as well.


Self Help
I have had a DXA scan and bones ok. I am fairly fit for 65 but am doing a lot more exercise to combat the tiredness and muscle loss. Take the dog for a 3km walk regularly, up a steep hill along the top and down again. Good for legs, back and heart I'm told. I was sceptical about joining a gym, but after an excellent training program (thanks Chris) for upper body strength plus swimming, I have noticed the difference. Good for arms, shoulders and chest. So alternate days of dog walking and going to the gym.


From this forum I discovered the late Prof Jane Plant. I have changed my diet to mainly Asian because of her (thank you Jane), cut out junk food, mainly processed food, all dairy (because of the added growth hormones), coffee, tea, plus minimised red meat and animal fat. Lots more vegetables, fruit, pulses, nuts, herbs, spices, green teas and varieties of Alpro. I've actually enjoyed the diet change and we have tried cooking lots of new recipes, some really good and some well not so (tofu yuk)!


I take a daily 75mg Aspirin, apparently it helps to stop the cancer spreading – good plan!


I was recommended to take daily CBD oil (not the hallucinogenic THC) cannabis derivative. Lots of information available online but not much medical research. After nearly a year I can't say if it has done me any good or not. Probably the same with all alternative therapies.


Thinking positive, I tried being miserable and didn't like it very much!


Music has been a big help too. Deezer subscription on my iPhone and downloaded lots of my favourite tracks. Great when sitting waiting for an appointment, or in the MRI scanner, or whenever feeling stressed even in the middle of the night. I also use my headphones in the Supermarket when feeling anto-social. Music is the soundtrack to your life.


Radiotherapy
East Sussex is not good for RT, the Lineacs at Brighton are over 10 years old. The replacement facilities at Preston Park and Eastbourne have both had their work delayed due to budget constraints, allegedly the funds were diverted to pay the agency wage bills.


I decided to go to Canterbury where they have new Varian TrueBeam machines. These (IMHO) are much more accurate, so hopefully less collateral damage to healthy tissues. I have had my CT scan and tattoos so ready to start 8 weeks RT from next Tuesday to my prostate, seminal vesicles (didn’t know I had these!) and nearby lymph nodes. I am apprehensive, mainly about getting bladder and bowel side effects, but who knows. Maybe I will do another update in June when it is all over.


Canterbury is a 140 mile round trip from Eastbourne so we will rent a room in Canterbury and stay during the week. Well worth it I think to be treated on an up to date machine. Wish me luck, I might need it!


What’s Next
I’m hopeful that my PC has been caught in time and that the RT will conquer it. So looking forward to the Summer. I’m also considering doing the South Downs Walk, 100 miles from Eastbourne to Winchester, with some family and friends to raise money for the Eastbourne PCaSO. That would be two big challenges, something to tell my Grandchildren about.

 

 

User
Posted 26 Mar 2016 at 13:29

I've had second thoughts on whether to post this or not, but as I have had so much help from this Forum maybe my comments will help someone else. Here goes....


Treatment
I was diagnosed about a year ago, PSA 37, Gleason 5+4, T3b, M0, N0. A big shock and life changing event. 3 options: do nothing and have about 18 months; or take the treatment; or treatment plus self help. Discussing this with my speciality nurse and took the last option. Also advised about Prostate Cancer UK and my local support group PCaSO. I spent the next month or so doing research, talking to people and reading the forum. All a massive help. Also had a lot of support from family and friends. It's good to know that you are not alone in this.


Treatment started with Zoladex hormone therapy. PSA came down and when less than 1 able to start radiotherapy. Side effects have been manageable, only hot flushes, tiredness and some muscle loss.


I have joined the STAMPEDE trial, this is really worthwhile as I have a second speciality nurse who monitors me every month from a blood test. Not fun but reassuring to know that the test results are all positive, not just for PSA and testosterone but liver and kidney functions as well.


Self Help
I have had a DXA scan and bones ok. I am fairly fit for 65 but am doing a lot more exercise to combat the tiredness and muscle loss. Take the dog for a 3km walk regularly, up a steep hill along the top and down again. Good for legs, back and heart I'm told. I was sceptical about joining a gym, but after an excellent training program (thanks Chris) for upper body strength plus swimming, I have noticed the difference. Good for arms, shoulders and chest. So alternate days of dog walking and going to the gym.


From this forum I discovered the late Prof Jane Plant. I have changed my diet to mainly Asian because of her (thank you Jane), cut out junk food, mainly processed food, all dairy (because of the added growth hormones), coffee, tea, plus minimised red meat and animal fat. Lots more vegetables, fruit, pulses, nuts, herbs, spices, green teas and varieties of Alpro. I've actually enjoyed the diet change and we have tried cooking lots of new recipes, some really good and some well not so (tofu yuk)!


I take a daily 75mg Aspirin, apparently it helps to stop the cancer spreading – good plan!


I was recommended to take daily CBD oil (not the hallucinogenic THC) cannabis derivative. Lots of information available online but not much medical research. After nearly a year I can't say if it has done me any good or not. Probably the same with all alternative therapies.


Thinking positive, I tried being miserable and didn't like it very much!


Music has been a big help too. Deezer subscription on my iPhone and downloaded lots of my favourite tracks. Great when sitting waiting for an appointment, or in the MRI scanner, or whenever feeling stressed even in the middle of the night. I also use my headphones in the Supermarket when feeling anto-social. Music is the soundtrack to your life.


Radiotherapy
East Sussex is not good for RT, the Lineacs at Brighton are over 10 years old. The replacement facilities at Preston Park and Eastbourne have both had their work delayed due to budget constraints, allegedly the funds were diverted to pay the agency wage bills.


I decided to go to Canterbury where they have new Varian TrueBeam machines. These (IMHO) are much more accurate, so hopefully less collateral damage to healthy tissues. I have had my CT scan and tattoos so ready to start 8 weeks RT from next Tuesday to my prostate, seminal vesicles (didn’t know I had these!) and nearby lymph nodes. I am apprehensive, mainly about getting bladder and bowel side effects, but who knows. Maybe I will do another update in June when it is all over.


Canterbury is a 140 mile round trip from Eastbourne so we will rent a room in Canterbury and stay during the week. Well worth it I think to be treated on an up to date machine. Wish me luck, I might need it!


What’s Next
I’m hopeful that my PC has been caught in time and that the RT will conquer it. So looking forward to the Summer. I’m also considering doing the South Downs Walk, 100 miles from Eastbourne to Winchester, with some family and friends to raise money for the Eastbourne PCaSO. That would be two big challenges, something to tell my Grandchildren about.

 

 

User
Posted 27 Mar 2016 at 13:53

Hi XK8, is that the car you have or the one you want?

Welcome to this site and glad that you have written down details for others to see, very informative.

My stats are PSA 63 at diagnosis Feb2015, Gleason 3+4=7 T2 aggressive PCa confined to capsule,started HT(zoladex) then PSA dropped to 0.5 started RT 37 fractions and finished Nov 2015.

PSA down to 0.01 officially undetectable (sorry again John) and started "add asprin" trials for five years. Purpose of trials is to prove or not the belief that Asprin controls the recurrence of cancer cells, it is being offered to those just finishing the RT treatment, not all health trusts are involved. Some GPs are offering Asprin anyway and I am doing the trial to help the research so that somewhere down the line people will benefit from the results.

Best of luck with the travelling although I think staying away is probably a good thing. As for side effects to RT I found travelling to and fro was problematic with the need to pee every ten minutes or so, also my bowels were a lot looser after a couple of weeks and found that visits to the loo for a poo first thing in the morning (usually three times in quick succession) after that the day went not too bad but got wet farts so be prepared with change of undies to hand and wet wipes. Tiredness got worse but was manageable and wears off after ending the treatment.

Made lots of friends at RT centre and staff are really great and understanding.

Stay happy and positive it is the best way to be.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 28 Mar 2016 at 07:26
Hello and welcome from me too.

I'm t3a with Gleason 7 and Psa upon dx 33.5. I completed RT in Jan 15 and am still on HT until Aug 17.

As Chris often mentions my Psa score is higher than his post RT now at 0.2 for the second time, but I'm happyish with this as it has not risen and the Onco did not seem worried about it. I continue 6 monthly checks.

I think you're doing the right thing by staying close to the centre in Canterbury. It can be a draining experience having to attend each weekday for your fractions.

A new RT centre opened only about 3 months before I started which involved a 5 min drive or a 40 mins walk across the fields from my house. Previously I would have had to driven a 50 mile round trip to Guildford which would have involved the M25 . I chose to drive as the need to be close to a toilet grew as the treatment progressed and being able to be home asap had its benefits.

My worst moments were having hot flushes during the sessions and being unable to do anything about it at all. But I survived !

I carried a survival kit with me including a complete change of clothes and several pairs of underpants. Although I didn't need to use any of them I found reassuring to have it with me. A sealable bottle with a large opening was also part of the kit as well and I was not alone in having this when talking to other patients.

The atmosphere at the centre was excellent and I was quite happy to chat away with other patients. I still see one of the them quite often and we've become good friends. And don't forget the radiographers have seen it all before if you have any concerns .

I really hope that all goes well for you and that you enjoy staying in East Kent.

Best wishes ,

John

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User
Posted 27 Mar 2016 at 13:53

Hi XK8, is that the car you have or the one you want?

Welcome to this site and glad that you have written down details for others to see, very informative.

My stats are PSA 63 at diagnosis Feb2015, Gleason 3+4=7 T2 aggressive PCa confined to capsule,started HT(zoladex) then PSA dropped to 0.5 started RT 37 fractions and finished Nov 2015.

PSA down to 0.01 officially undetectable (sorry again John) and started "add asprin" trials for five years. Purpose of trials is to prove or not the belief that Asprin controls the recurrence of cancer cells, it is being offered to those just finishing the RT treatment, not all health trusts are involved. Some GPs are offering Asprin anyway and I am doing the trial to help the research so that somewhere down the line people will benefit from the results.

Best of luck with the travelling although I think staying away is probably a good thing. As for side effects to RT I found travelling to and fro was problematic with the need to pee every ten minutes or so, also my bowels were a lot looser after a couple of weeks and found that visits to the loo for a poo first thing in the morning (usually three times in quick succession) after that the day went not too bad but got wet farts so be prepared with change of undies to hand and wet wipes. Tiredness got worse but was manageable and wears off after ending the treatment.

Made lots of friends at RT centre and staff are really great and understanding.

Stay happy and positive it is the best way to be.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 27 Mar 2016 at 14:23

Good luck with the treatment XK8 when it starts on Tuesday.

I too think it's a good idea to stay for the week, save expending all that energy travelling and who knows, you may be fit enough to explore the local area and so distract yourself. I hope so anyway

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Mar 2016 at 17:52

Hi XK8,

Hope you sail through your treatment and that any side effects will be minimal. You did well to find out about better RT equipment elsewhere - you have to give yourself the best chance as I see it. When proprietary treatment is given along with dietary changes, it is difficult to know what difference these make but they won't do any harm and may hopefully help.

Barry
User
Posted 28 Mar 2016 at 07:26
Hello and welcome from me too.

I'm t3a with Gleason 7 and Psa upon dx 33.5. I completed RT in Jan 15 and am still on HT until Aug 17.

As Chris often mentions my Psa score is higher than his post RT now at 0.2 for the second time, but I'm happyish with this as it has not risen and the Onco did not seem worried about it. I continue 6 monthly checks.

I think you're doing the right thing by staying close to the centre in Canterbury. It can be a draining experience having to attend each weekday for your fractions.

A new RT centre opened only about 3 months before I started which involved a 5 min drive or a 40 mins walk across the fields from my house. Previously I would have had to driven a 50 mile round trip to Guildford which would have involved the M25 . I chose to drive as the need to be close to a toilet grew as the treatment progressed and being able to be home asap had its benefits.

My worst moments were having hot flushes during the sessions and being unable to do anything about it at all. But I survived !

I carried a survival kit with me including a complete change of clothes and several pairs of underpants. Although I didn't need to use any of them I found reassuring to have it with me. A sealable bottle with a large opening was also part of the kit as well and I was not alone in having this when talking to other patients.

The atmosphere at the centre was excellent and I was quite happy to chat away with other patients. I still see one of the them quite often and we've become good friends. And don't forget the radiographers have seen it all before if you have any concerns .

I really hope that all goes well for you and that you enjoy staying in East Kent.

Best wishes ,

John

User
Posted 30 Mar 2016 at 10:04

Thanks for all your comments, they help.
First session over, it was a bit claustrophobic but I guess I will get used to it.
Easy to spot fellow travellers, they were all gulping down their 500ml of water :)

Steve
(XK8 is my black Jaguar convertible, great fun to drive)

User
Posted 30 Mar 2016 at 11:25

Hi Steve,

Hope your treatment goes really well. 

I'm sure you will get used to the daily routine and find yourself a little lost when it ends.  For a short while it became part of my life and after all the daily medical attention, it's a bit of a strange feeling when they tell you that they don't need to see you for six months (apart from the post radiotherapy review appointment, usually six after RT ends).  You can't help wondering how the PSA figure is reacting in that time.

I too, take 75mg Aspirin daily, not out of choice but because I suffered a heart attack.  If it helps stop cancer spreading then that is a real bonus.

Anyway, Best of Luck with your treatment.

All the Best,

Steve

 
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