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Gleason 4:5 diagnosis - Diet

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User
Posted 16 Mar 2018 at 07:46
After a PSA of 38 followed by an MRI scan and Template Biopsy I got my results on 15th March.

My Gleason score is 4:5 and is T2c. I am 65 and was told my cancer is advanced aggressive

Of 16 biopsies on left side 15 had some cancer and 1 was 100% cancer. On right side. 12 had some cancer and 4 were clear.

I will be having a full body CT Scan and a bone scan as priority. Once those results are known the plan is for me to start 3 months hormone treatment followed by 6 weeks radiotherapy Monday to Friday.

My appointment with the specialist nurse for my results was detailed and forthright.

So my timeline started on the 26th of January when I got my blood test PSA score to the 15th March for results, 7 weeks.

I will not be offered radical prostatectomy as my diagnosis means that this procedure would not guarantee removal of all cancerous cells due to the amount of the cancer, despite it being T2c

User
Posted 17 Mar 2018 at 09:50

Rather than posting what has been posted lots of times before, there is lots of information in the lifestyle section of the forum - use the search function to look for diet or look here https://community.prostatecanceruk.org/topics/26-Diet-and-lifestyle

Note though that regardless of what other members have or have not been allowed to eat during RT, your oncology department will tell you what you need to do and it may be different to other people for good reason. For example, most men have to eat a high fibre diet but my husband had to stick to a low fibre diet. Almost everyone is told no alcohol or fizzy drinks during the RT - this is to minimise the amount of gas in the bowel.

Edited by member 17 Mar 2018 at 10:11  | Reason: Not specified

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

User
Posted 17 Mar 2018 at 09:50
Good morning Alan,

For me, as an individual, I find that the more control I have in my life the better I cope. This includes diet and exercise, which feels especially relevant during treatment and makes me feel that I'm doing my bit rather than just being in the hands of doctors etc. My regime may have little or even no impact but then again it might. It does, however, help keep my head straight . I eat healthily, have recently cut back a lot on dairy, take vitamin D3 and aspirin, ordered Pomi T supplement, incorporate turmeric, black pepper and garlic in my food. I find all this easy to do. I've stopped taking the aspirin as I'm due to start SRT next week. I've posted before that we all do what we need to do ,and as you say none of this is conclusively proven . I drink about 6/8 pints a week but pub atmosphere has always been highly beneficial for my mental wellbeing !

Take care , Paul.

User
Posted 17 Mar 2018 at 23:04

Bestie - It isn’t really the oncologist’s area of expertise - it is usually the radiotherapy teams that are the experts in the matter of diet rules and managing side effects so stick with their advice.

Pallance - hot flushes are unlikely to cause you great problems while cycling except that perhaps you will become hotter more quickly and might be better in a cotton t-shirt than man-made cycling tops. Hot flushes are more problematic when you don’t want to be sweaty (like social occasions or when wearing a smart shirt) or at night - it is hard to get quality sleep if the covers are on and then off and then on again. If hot flushes become a problem, you can try sage tablets from Holland & Barrett or similar stores, and in some areas you can get acupuncture on the NHS - usually via the oncology dept or at your local Maggies centre or hospice day services.

The HT reduces muscle tone and softens the ligaments so you may find your pelvis loosens and hips & knees become achy. But if you can, the best way to combat the fatigue is to push through it. John worked full time, went to the gym every night and continued to play rugby - he carried on cycling as well. He did need an occasional nap in the office mid afternoon though ;-)

Edited by member 17 Mar 2018 at 23:13  | Reason: Not specified

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

User
Posted 18 Mar 2018 at 19:20

It’s normal procedure with high Gleason.

Be aware that ‘aggressive’ does not mean what you would imagine when used to describe prostate cancer. A G8 or above, a Gleason with any combination of 5 (including tertiary 5), a doubling time of less than 6 months, T3 or above, lymph involvement, mets would all be described as aggressive - it denotes to medical people the need to act rather than wait.

 

Edited to say that many cancer specialists wouldn't use 'aggressive' in this context - they would describe it as 'high risk'. 

Edited by member 18 Mar 2018 at 21:01  | Reason: Not specified

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

User
Posted 19 Mar 2018 at 09:26
That happened to me, it’s fairly normal. Some people have it to a lesser or greater extent. The radiographer should be able to advise what cream to apply to ease it, I was told to use aqueous cream but I’m not sure if all radiographers recommend it.

Arthur

User
Posted 03 Apr 2018 at 23:42

Thanks

My bone scan was clear except for a spot on my T11 which the radiologist could not identify, so i'm hoping that will be no problem. My local NHS is so good I had an MRI today already to identify what it is. T11 is a way from my prostate so i'm hoping the cancer may not have gone all the way there, bypassing all the other lovely places available!

My CT scan was 100% clear so i cant explain how my wife and I feel. Strange to feel happy you have no significant secondaries, then the original diagnosis hits back home.

I am on the "normal" treatment for Gleason 4:5 localised advanced, I have looked at trials, as i would like to help advance treatment, STAMPEDE is one i may be suitable for in a few months. My wife doesn't agree, but i've reached 65, with a few more years to go, i'de like to give something back.

 

 

 

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User
Posted 16 Mar 2018 at 21:23

My first question is on the side effects of the Hormone therapy
I’ve read diet can really help, so any recommendations gratefully received and eaten👌
I do still have to wait for a CT scan and bone scan but I’m on priority for those and I hope they won’t be long in coming but no treatment will commence until the consultant oncologists has looked at the results of the scans and agrees the treatment plan with me .
Absolutely no alcohol during treatment, but that’s not an issue for me
I’m told to keep cycling as much as feel is reasonable during all my treatments, including the 6 weeks of targeted external radiotherapy as keeping fit will help.
I have already lost approaching a stone in weight since my new year diet, I have gone fron13 stone 3 pounds, to 12 stone 5 pounds today and I an 5’ 11” so my BMI is 24.5. I don’t think I will get a lot of cycling as the book I got from prostate cancer research Centre mentions the skin between my legs could get dry and sore as the radiotherapy progresses.
But I’m on the journey now and this stage of it should finish August.

I suppose one important question I have left to the end is on page 9 of the prostate cancer research Centre pamphlet was given it states if you have a Gleason score between eight and 10 this means yours is more aggressive and more likely to reduce your life expectancy. I would like to get more clarification on this because according to Google the current life expectancy in 2017 for males is 79 so as I’m 65 I could expect to live another 14 years if I was normal, but as I’m not, it would be reduced I would think perhaps I have another 10 years?

Edited by member 16 Mar 2018 at 21:48  | Reason: Not specified

User
Posted 16 Mar 2018 at 22:18

You shouldn't assume that. If your scans are clear, they are proposing a curative treatment path for you. Dr Google is unreliable in these situations - if HT/RT works you should live as long as you would have done anyway.

I don't know of anyone who got sore skin between their legs - the radiotherapy arcs around your body more or less on a line between your waist and your hips so any sore skin tends to be where your pants elastic sits.

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

User
Posted 16 Mar 2018 at 23:20

I take your point, but it’s the pamphlet they gave me that says if you have a Gleason score of between eight and 10 and I do because mine is 4:5, it is more likely to reduce my life expectancy

User
Posted 16 Mar 2018 at 23:29

It’s obvious that G8, 9 or 10 are more aggressive and therefore more likely to have spread. That doesn’t change the fact that if you are offered curative treatment it is because the MDT believe that it will work; it would be a waste of NHS resources to offer those treatments to people that are incurable.

Fingers crossed your scans are okay and the RT can go ahead.

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

User
Posted 17 Mar 2018 at 07:54

So I would like some recommendations on diet while undergoing treatment. I’ve read of the good stuff to eat, despite the benefits not being conclusively proven. Pomegranates, tomato juice, blueberries etc. I would be interested what other people try

And what foods to avoid

Edited by member 17 Mar 2018 at 07:56  | Reason: Not specified

User
Posted 17 Mar 2018 at 09:50

Rather than posting what has been posted lots of times before, there is lots of information in the lifestyle section of the forum - use the search function to look for diet or look here https://community.prostatecanceruk.org/topics/26-Diet-and-lifestyle

Note though that regardless of what other members have or have not been allowed to eat during RT, your oncology department will tell you what you need to do and it may be different to other people for good reason. For example, most men have to eat a high fibre diet but my husband had to stick to a low fibre diet. Almost everyone is told no alcohol or fizzy drinks during the RT - this is to minimise the amount of gas in the bowel.

Edited by member 17 Mar 2018 at 10:11  | Reason: Not specified

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

User
Posted 17 Mar 2018 at 09:50
Good morning Alan,

For me, as an individual, I find that the more control I have in my life the better I cope. This includes diet and exercise, which feels especially relevant during treatment and makes me feel that I'm doing my bit rather than just being in the hands of doctors etc. My regime may have little or even no impact but then again it might. It does, however, help keep my head straight . I eat healthily, have recently cut back a lot on dairy, take vitamin D3 and aspirin, ordered Pomi T supplement, incorporate turmeric, black pepper and garlic in my food. I find all this easy to do. I've stopped taking the aspirin as I'm due to start SRT next week. I've posted before that we all do what we need to do ,and as you say none of this is conclusively proven . I drink about 6/8 pints a week but pub atmosphere has always been highly beneficial for my mental wellbeing !

Take care , Paul.

User
Posted 17 Mar 2018 at 09:57

Bestie, the RT team may tell you to avoid beer once the RT starts. The diet sheet J was given said no alcohol from one week before :-(

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

User
Posted 17 Mar 2018 at 12:44
Originally Posted by: Online Community Member

Bestie, the RT team may tell you to avoid beer once the RT starts.

After both my biopsy and bone scan I was told to “drink plenty of fluids”. Doctor’s orders! So I still am.....

User
Posted 17 Mar 2018 at 20:22
Cycling is my life now. I was a competitive county standard runner at 10 miles to marathon distances up till I was 40, then three of my discs were degraded due to the years of pounding out the miles on the road so I was advised to take up an easier sport on the body and went for cycling. I now cycle a minimum 200 miles a week and compete at club and local level. I have just finished a massive training load build up from November through to February and have signed up for multiple races throughout the summer, all to no avail now. I have my full body CT scan Monday, 26 March and hopefully my bone scan as soon as possible. My oncologists won’t start any treatment until these results are in. I expect this will mean my hormone treatment for three months will commence about the middle of April and then about the middle of July I will start my six weeks radiotherapy. I will keep on cycling throughout all my treatment but if I do feel rough I’m not safe enough to go out on the roads I have a virtual trainer in my garage where it would be safe to go for some exercise. I have been cycling every day for the last six years so keeping this going is vital to my mental well-being during what is for everybody an extremely testing time. I have always liked a beer but being Gleason 4:5 I want to keep my weight under control especially due to the side-effects of the hormone treatment. My diet will consist of all the recommended foods that are prostate friendly. I won’t race this summer to be on the safe side I think that is sensible, I have no idea how hot flush would affect me if I was racing other cyclists up some hills in the warm weather. I was always severely frustrated as a runner with my training and racing schedule was interrupted for any reason and unfortunately at 65 I have not got any better. But I am thinking ahead of all the races I will enter in 2019 when I will be in another age bracket 66 to 70!
User
Posted 17 Mar 2018 at 20:34

Check out Irun, he completed the Marathon Des Sables not long after diagnosis with extensive mets and has just completed a 120 mile stage of the 6633 Arctic Ultra. Training doesn't have to stop just because you are on HT or having RT. But I hope you are going to use a prostate friendly saddle?

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

User
Posted 17 Mar 2018 at 22:12
I had already bought a prostate friendly saddle before I even had my template biopsy nothing like being prepared. I’m full of admiration of anyone doing ultra runs during treatment . The question I would like an answer to is if I am out on my usual 60 mile bike ride with my mates HoW would hot flushes affect me and also hormone treatment in general. I have read that the radiotherapy can leave you feeling very tired but as I’m such a fit cyclist presuming I would just keep on cycling while I have energy
User
Posted 17 Mar 2018 at 22:54
Hi Lyn, Yes I forgot to ask the Oncologist for his advice. It appears the majority say definitely abstain with a few allowing a couple of weekend refreshers. Think I'll err on the side of caution, let's face it,it's only 20 days after all. Cheers....sorry ..I mean thank you !

Paul

User
Posted 17 Mar 2018 at 23:04

Bestie - It isn’t really the oncologist’s area of expertise - it is usually the radiotherapy teams that are the experts in the matter of diet rules and managing side effects so stick with their advice.

Pallance - hot flushes are unlikely to cause you great problems while cycling except that perhaps you will become hotter more quickly and might be better in a cotton t-shirt than man-made cycling tops. Hot flushes are more problematic when you don’t want to be sweaty (like social occasions or when wearing a smart shirt) or at night - it is hard to get quality sleep if the covers are on and then off and then on again. If hot flushes become a problem, you can try sage tablets from Holland & Barrett or similar stores, and in some areas you can get acupuncture on the NHS - usually via the oncology dept or at your local Maggies centre or hospice day services.

The HT reduces muscle tone and softens the ligaments so you may find your pelvis loosens and hips & knees become achy. But if you can, the best way to combat the fatigue is to push through it. John worked full time, went to the gym every night and continued to play rugby - he carried on cycling as well. He did need an occasional nap in the office mid afternoon though ;-)

Edited by member 17 Mar 2018 at 23:13  | Reason: Not specified

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

User
Posted 18 Mar 2018 at 12:26

Bestie the RT team at WP said it was ok to have a beer (in moderation) during treatment

Good luck for tomorrow and the following four weeks

Bri

Oops sorry for hi jacking your thread Pallance. Hope your results and subsequent treatment are good and don’t interfere with your cycling too much

Edited by member 18 Mar 2018 at 12:28  | Reason: Not specified

User
Posted 18 Mar 2018 at 17:50
As my Gleason score is 4:5 and classed as aggressive I am having a CT scan and a bone scan as priority. Is this normal procedure with a high Gleason score, or is it possible they have seen something else on my MRI and haven’t told me?
User
Posted 18 Mar 2018 at 19:20

It’s normal procedure with high Gleason.

Be aware that ‘aggressive’ does not mean what you would imagine when used to describe prostate cancer. A G8 or above, a Gleason with any combination of 5 (including tertiary 5), a doubling time of less than 6 months, T3 or above, lymph involvement, mets would all be described as aggressive - it denotes to medical people the need to act rather than wait.

 

Edited to say that many cancer specialists wouldn't use 'aggressive' in this context - they would describe it as 'high risk'. 

Edited by member 18 Mar 2018 at 21:01  | Reason: Not specified

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

User
Posted 18 Mar 2018 at 19:44

Originally Posted by: Online Community Member

It’s normal procedure with high Gleason.

Be aware that ‘aggressive’ does not mean what you would imagine when used to describe prostate cancer. A G8 or above, a Gleason with any combination of 5 (including tertiary 5), a doubling time of less than 6 months, T3 or above, lymph involvement, mets would all be described as aggressive - it denotes to medical people the need to act rather than wait.

Thank you, my wife is frantic, this will help calm her down!

User
Posted 19 Mar 2018 at 09:08
Originally Posted by: Online Community Member

You shouldn't assume that. If your scans are clear, they are proposing a curative treatment path for you. Dr Google is unreliable in these situations - if HT/RT works you should live as long as you would have done anyway.

I don't know of anyone who got sore skin between their legs - the radiotherapy arcs around your body more or less on a line between your waist and your hips so any sore skin tends to be where your pants elastic sits.

Thanks for your comments, only Section four, page 24 in the book the Oncology nurse gave me says; You may experience some darkening and soreness of the skin in the area being treated, this is most common between the legs and around the anus.

Would you agree with that?

User
Posted 19 Mar 2018 at 09:26
That happened to me, it’s fairly normal. Some people have it to a lesser or greater extent. The radiographer should be able to advise what cream to apply to ease it, I was told to use aqueous cream but I’m not sure if all radiographers recommend it.

Arthur

User
Posted 29 Mar 2018 at 23:28

Originally Posted by: Online Community Member
Originally Posted by: Online Community Member

You shouldn't assume that. If your scans are clear, they are proposing a curative treatment path for you. Dr Google is unreliable in these situations - if HT/RT works you should live as long as you would have done anyway.

I don't know of anyone who got sore skin between their legs - the radiotherapy arcs around your body more or less on a line between your waist and your hips so any sore skin tends to be where your pants elastic sits.



Thanks for your comments, only Section four, page 24 in the book the Oncology nurse gave me says; You may experience some darkening and soreness of the skin in the area being treated, this is most common between the legs and around the anus.
Would you agree with that?

Any ideas Lyneyre?

User
Posted 30 Mar 2018 at 00:57

Sorry - missed that. John definitely wasn’t zapped between the legs or anywhere near his anus and the skincare advice sheet he was given was all about the skin around his hips and midriff. However, a straw poll of the other RT guys is needed I think????

Was it definitely a book about RT for prostate cancer and not some other one?

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

User
Posted 30 Mar 2018 at 08:26
I didn't get any soreness of the skin anywhere and didn't notice any colour change either. I was fortunate in that my psoriasis improved a lot while having RT and they said that it used to be treated with RT at one time.

All the best with your treatment.

Kevan

User
Posted 30 Mar 2018 at 08:42

I had no skin soreness from RT either. And I was expecting it! However, I did get industrial scale fatigue. As this subsided a month or two after the end of RT, the fatigue from HT took over. Previous to all my PCa treatment I was a very fit climber. I only wish I could be anywhere close to that now. Muscle wastage. growing waste line and limited energy have seriously taken their toll. Two weeks ago I went out climbing for half a day, something that previously would have gone unnoticed physically. On this occasion, it flattened me and I felt notably ill all evening. It was worth it though, and I WILL do it again!

The RT was hard (for me), but I think the HT is the thing that is squashing me at the moment. I'm on Bicalutalmide 150mg, and although I was originally told this would be for two years, the onco has agreed that one and a half years should be OK. I really feel that I'm just trying to hold on until September when it all stops and I can get my life back. Getting back to fitness will be painful, but so very worth it.

User
Posted 03 Apr 2018 at 23:42

Thanks

My bone scan was clear except for a spot on my T11 which the radiologist could not identify, so i'm hoping that will be no problem. My local NHS is so good I had an MRI today already to identify what it is. T11 is a way from my prostate so i'm hoping the cancer may not have gone all the way there, bypassing all the other lovely places available!

My CT scan was 100% clear so i cant explain how my wife and I feel. Strange to feel happy you have no significant secondaries, then the original diagnosis hits back home.

I am on the "normal" treatment for Gleason 4:5 localised advanced, I have looked at trials, as i would like to help advance treatment, STAMPEDE is one i may be suitable for in a few months. My wife doesn't agree, but i've reached 65, with a few more years to go, i'de like to give something back.

 

 

 

User
Posted 10 Apr 2018 at 08:11
Originally Posted by: Online Community Member

I had no skin soreness from RT either. And I was expecting it! However, I did get industrial scale fatigue. As this subsided a month or two after the end of RT, the fatigue from HT took over. Previous to all my PCa treatment I was a very fit climber. I only wish I could be anywhere close to that now. Muscle wastage. growing waste line and limited energy have seriously taken their toll. Two weeks ago I went out climbing for half a day, something that previously would have gone unnoticed physically. On this occasion, it flattened me and I felt notably ill all evening. It was worth it though, and I WILL do it again!

The RT was hard (for me), but I think the HT is the thing that is squashing me at the moment. I'm on Bicalutalmide 150mg, and although I was originally told this would be for two years, the onco has agreed that one and a half years should be OK. I really feel that I'm just trying to hold on until September when it all stops and I can get my life back. Getting back to fitness will be painful, but so very worth it.

I am on Bicalutamide, 50mg only for 4 weeks, started Sunday 8th April, on 23rd April I start Triptorelin 3 monthly implant till 23rd July, when I begin 6 weeks of Monday to Friday radiotherapy.

Your Bicalutamide is 3vtimes stronger than mine, so you did not get the implant treatment, ?

User
Posted 10 Apr 2018 at 10:39

Morning.
I didn't get offered anything else apart from 150mg bicalutamide. Early days I did ask the onco if I could stop that, but she said I would need an alternative if I did. That may have been an implant. I stuck with the Bical as I was told it affects the libido less. Turns out it has flattened my libido anyway! I don't know how heavyweight 150mg Bical is in the grand scale of HT as regards effectiveness and side effects, it's all a bit of a dark art to me. As regards choices of HT, I would hope your onco would be able to advise for what would suit you best. Hope it works out.

User
Posted 10 Apr 2018 at 11:46

150mg is a treatment dose; 50mg is simply to mitigate the tumour flare that happens when you start LHRH hormone therapy

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

User
Posted 10 Apr 2018 at 18:23

Originally Posted by: Online Community Member

150mg is a treatment dose; 50mg is simply to mitigate the tumour flare that happens when you start LHRH hormone therapy

Whats the difference in end result then Lyn? I would rather not have to get injections TBH

 

Alan

User
Posted 10 Apr 2018 at 19:22

They work in very different ways - bicalutimide disguises testosterone so that the cancer is tricked into thinking it is being starved. LHRH treatments actually stop the testosterone from being produced.

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

User
Posted 10 Apr 2018 at 20:01

Originally Posted by: Online Community Member

They work in very different ways - bicalutimide disguises testosterone so that the cancer is tricked into thinking it is being starved. LHRH treatments actually stop the testosterone from being produced.

 

OK, so does that not make Bicalutamide 150mg a treatment to try first before LHRH may I ask please? That way, if it is only tricking the cancer the "some would say awful" side effects of LHRH could possibly be avoided if the Bicualimide was successful in stopping the cancer growing.

Or is the fact that LHRH can actually shrink the cancer thst is the reason?

User
Posted 10 Apr 2018 at 20:45

You are in different circumstances to Graham. Bicalutimide 150mg is more often used for men having salvage RT/HT. LHRH ADT is used when RT is the primary treatment. You could ask your oncologist about changing but the side effects are more or less the same and he hasn't just chosen your treatment on a whim.

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

User
Posted 11 Apr 2018 at 21:05

Originally Posted by: Online Community Member

You are in different circumstances to Graham. Bicalutimide 150mg is more often used for men having salvage RT/HT. LHRH ADT is used when RT is the primary treatment. You could ask your oncologist about changing but the side effects are more or less the same and he hasn't just chosen your treatment on a whim.

 

She (sorry couldn't resist that update)

User
Posted 11 Apr 2018 at 21:29

Ha ha - I almost always write s/he and just this once, I missed it :-/

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

 
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