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User
Posted 20 May 2021 at 14:30

Hi everyone - need a bit of help and advice

I was diagnosed with Prostate cancer after biopsy - Jan this year 2021

T2A NOMO but Gleason score on one side was 9 - high risk - PSA now is 18

Since then I have had an MRI which showed it was contained - I opted for prostatectomy.

The hospital UCL to do the surgery asked that I have a PET scan - gives a more detailed picture of the cancer spread.

It appears now that the cancer may have spread slightly to the Seminal Vesicles and UCL suggested that EBRT with HT might be the best option.

My urologist has said he will ask for a second opinion from another hospital re the operation, but on reading the conversations, I'm warming to the HT and EBRT option.

I'm 67 but reasonably fit - taking no other medication - no other medical issues - just this cancer.

I'm a little concerned about side effects of HT and bowel issues etc from the radiation - any advice/enlightenment would be appreciated. Is it that bad??

Has anyone had any not so bad experiences with HT? And does one need to continue it for 3 years after?

And do most side effects go away after?

I'm a keen weight trainer so I understand its good to keep this up with HT??

Edited by member 21 May 2021 at 16:31  | Reason: Not specified

User
Posted 20 May 2021 at 16:16
My husband had EBRT and HT following a failed prostatectomy. He hated every minute of the HT and stopped it earlier than planned but the RT was a breeze - he continued working full time throughout, went to the gym every day & still played his beloved rugby. No real side effects at all, apart from the occasional afternoon nap towards the end of the RT.

His biggest regret is having the op - if he had known that it would be unsuccessful, he wouldn't have put himself through all the side effects. On the other hand, some men are happy to have the prostatectomy knowing that they will need adjuvant or salvage RT afterwards.

I think with a Gleason 9, it will be worth you talking to the oncologist about the pros and cons of EBRT alone v brachytherapy/EBRT combination.

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

User
Posted 23 May 2021 at 10:23

You'll also see clinicians use CaP, Carcinoma of the Prostate.

User
Posted 20 May 2021 at 19:58

One of the problems with PCa is that in similar diagnosis, some men respond differently to the same treatment. Lyn has said on more than one occasion that salvage treatment was not very successful and I think this is generally the case. However, as she has just stated, fortunately it worked for her husband, at least so far (because PCa sometimes takes off even years later), and also for a friend of mine who also had RT following failed Prostatectomy. My friend also now wishes he had just gone the HT/RT route too. However, either could have had some radio resistant cancer cells or a new cancer started in the Prostate if it was still there. My PSA, Gleason, staging and type of cancer was the same as my friend. I do think, had I also started with a Prostatectomy like him, rather than RT first, I would not have been in my present position with a small cancerous tumour in my Prostate with the prospect of further HIFU salvage treatment. But is was the same surgeon who operated on my friend who not only suggested I would be better going the RT/EBRT route but personally escorted me to the Oncologist to initiate it.

So treatment results for PCa cannot be predicted with certainty and there will always be cases that are different to more usual outcomes. If things don't go well you wonder if you could have gone a different route and even those who have done well sometimes wish they had had less treatment.

Decisions, decisions!

Edited by member 20 May 2021 at 20:01  | Reason: Not specified

Barry
User
Posted 21 May 2021 at 14:13

Hi Joe, 

Your age and activity sounds similar to me when I was diagnosed.   I was also T2a (told possibly T3a due to proximity to edge of prostate, but found to be T2a) Gleason 4+3 (found to be 4+4 post op).   I guess you're possibly T3a too.

It's a tough decision and it was a great call for the hospital to check with a PET scan.  If that hadn't happened it would possibly have been back fast.   I note you said possibly spread so that's makes your decision more difficult.

I was very keen to get it out and had little desire for hormones or RT.   In your case with a high Gleason and possible spread RT is very likely the best option.  Although I wonder if Open Surgery and taking more out might be an option.  Even so RT is a good option .  As Lyn mentions brachytherapy and EBRT might be a good option and there is someone on here who has written a big report on his treatment that way.  I'm not sure if it's Andy62. 

In my opinion (as a patient) I wouldn't want to waste time with something like brachytherapy focused on the prostate only when I possibly have something untouched elsewhere, even with hormones.

It's a tough decision but starting hormones quickly and having RT when your psa gets to a low level, I think it's said getting it less than 0.1,  is a good option.   You haven't said what your psa is now but they usually say they'll want to keep your on hormones for 3 months.

So all the best,  Peter

 

User
Posted 22 May 2021 at 01:09
PCa is abbreviation for Prostate Cancer.
Barry
User
Posted 28 May 2021 at 19:47

Keep with it Joe.   Having no symptoms can be a trap.  It's fortunate it was found now.  All the best, Peter

User
Posted 01 Jun 2021 at 02:00

Hi Joe,

Well at least you're on the treatment road now. I'm still in the wait between diagnosis and starting treatment. I am leaning towards RT/HT, but waiting for the results of my bone scan 3 weeks ago and then a chat with the oncologist to get my questions answered before making my final decision on treatment.

Know what you mean about feeling fine and fit...it doesn't make sense does it? I think the Youtube series is quite good to explain things. I am admittedly also feeling nervous about the HT side effects, more than the actual RT.

Anyway, good luck. I will be right along myself shortly.

User
Posted 04 Jun 2021 at 15:22

Hi Don1two

Hope you are well or as well as can be - brothers in arms.

Sounds as though you are going through similar process and thinking to me.

Luckily I've been pretty healthy most of my life. However I was having a blood test for something else last Nov 20 and asked if a PSA test could be included (as a precautionary measure). Well the results changed my life a little, but have become a bit philosophical about the whole thing - nothing we can do I guess, except hope the people in the hospital know what they are doing. This is a timeline of whats happened to me so far....

1. My Blood test had high PSA 22.5 - was sent to NHS Urologist and had another blood test to check - came down to 21

2. Had bone scan about 2 weeks after - clear

3. Biopsy - 3 weeks after with biopsy results another 3 weeks after that - Gleason 9 on one side 6 on the other - staging was a T2a NOMO but high risk or maybe locally advanced.

4. Had MRI about 1 month after - I was concerned about the time things were taking - however I was assured Prostate cancer was slow growing and a few weeks here or there was not going to make much difference. MRI showed that cancer was contained within the prostate.

Urologist and myself/partner discussed options - I was keen to go down the Radical Prostatectomy operation route - had read a bit about it.....

5. Details were sent off to UCL for the surgeons to look at the biopsy/MRI results etc.

6. 1 month after - UCL surgeon came back and wanted me to have a PET scan - more detailed scan - PET haven't been in the UK long apparently - had to go to a mobile unit that makes its way around the country.

7.  1 month after PET scan had meeting with urologist to get the news that UCL weren't prepared to operate as cancer was too close to prostate capsule and may have breached the outer case. Had second opinion at Arrow Park in Liverpool - same opinion came back.

8. Hormone/EBRT considered the best bet....Like you I am a bit concerned about side effects of the hormone drugs ( never been on any long term medication before).

9. So here I am - I'm due to have a 3 monthly slow release hormone injection on Monday 7/06 (Decapeptyl from memory), after being on the Bicalutamide tabs for about 10 days (to prevent testosterone flare) and also carry on the Bicalutimide till finished - about 30 days.

I understand the EBRT (treatment 4-5 weeks - 5 days per week) will be in about 3-4 months or when the PSA has come down to a low level. I also understand I may have to have hormone injections every 3 months for maybe up to 2 years after....

However so far so good - I have asked Cheshire Chris above how he got on with his treatment.....not keen on some of the listed side effects - but I guess it is what it is and side effects are different for different people - fingers crossed.

 

User
Posted 05 Jun 2021 at 12:01

Bon voyage Joe. I guess we will be roughly in lockstep with our treatments, so I will follow your progress.....good luck!

P.S. My bone scan was clear, waiting to see Oncologist on 14/6

Don

Edited by member 05 Jun 2021 at 12:01  | Reason: Not specified

User
Posted 05 Jun 2021 at 13:36

I was put on bicalutamide back in February for one month, and Zoladex was implant in March (scheduled for every 3 months). I am on second month of enzalutamide treatment. The schedule is for 6 rounds of RT in November,; yesterday I had a CT scan to confirm staging so I guess I must await the results of that to narrow down on treatment.

I have had limited side effects from HT - slight hot flushes. I get aches and pains but don't know if that is treatment, cancer or age (67). Initial diagnosis Gleason 8 T3/4 N1 M1 and three mets, two in pelvis (one tiny) and one in shoulder (tiny). Initial PSA 64.7. Down to 0.33 2 weeks ago.

I am positive, careful with what I eat (but not overly so), take a range of supplements (3 apricot kernels, 2000 mg Vit C, tumeric) got a dog (5 km minimum walk a day), electric bike (up to 15 km twice a week) and some weights. I feel better than I have done in years - both mentally and physically.

  

 

Edited by member 05 Jun 2021 at 13:40  | Reason: Not specified

User
Posted 05 Jun 2021 at 14:03
Joe, no, I was on bicalutimide as a "primary" HT, so I took 150mg/day for 18 months. I didn't have the injectable HT.

Everyone gets a different set of side effects, so it's just a matter of wait and see. Ones which almost everyone gets are loss of libido and fatigue. I was also rather fuzzy-headed for a couple of months - just couldn't think clearly - but fortunately that cleared up. I suffered from mood swings and put on weight. I didn't get hot flushes at all.

Very best wishes for your treatment,

Chris

User
Posted 09 Jun 2021 at 14:26
Hi everyone

Had 3 mthly Decapeptyl hormone (gonadotropin releasing hormone (GnRH) agonists) injection 3 days ago and carrying on with the Balcalutimide till script finished - end of month.

I have had no real serious side effects from the Bical tabs or the Decapeptyl to date.

However don't know if I'm imagining it or this is something to do with the drug, I have noticed:

1. Really tired last night after walk - but ok now

2. Dry mouth this morning and a bit of a sore throat

3. A few aches and pains but they seem to go away

4. I also had a twinge in the breast area - am I being paranoid??

I have been doing some long walks every (most) evening (5-10km) over the covid period and hope to continue them. I hope to get back into the gym to do some weights also soon.

Any comments on the symptoms anyone? Is this normal?

User
Posted 12 Aug 2021 at 08:06

Originally Posted by: Online Community Member

Hi Joe, so nice to hear from you and very glad that everything is going well in terms of your treatment.  Yes, I have had the same as you in terms of the Bical, however I had zoladex three monthly injection from my GP, so slightly different in that respect. I don't know what the difference is between the two.

Anyway I have to say I have not suffered any side effects so far, 'Touch wood' and hope it stays that way. I think you must be about 3 or 4 weeks ahead of me, I expect to get the radiation therapy towards the end of October beginning of November.

Hey ho.... good luck with everything and your keep fit which I am also doing,  lots of walks and I'm trying a Joe Wicks programme out of one of his books.

Don

Well I'm about 3 years on from you, Don - & I'm still here!  Yes, the 3 monthly HT - & yes, very important to keep as fit as you can, though you will get tired & weakness will set in, no matter what you do.

When you get to the RT, it is a bit of an endurance test - 20 visits? That's what I had - do you live far from the Hospital? I did. Keep to the diet, you will probably get some side effects - blood in poo, etc. Mine was done in Cambridge - Addenbrooks.

I did get some Proctilitis which I'm being treated for now, delays due to coronavirus backlog. Some of the rectum veins can get damaged during RT.

But the important thing is my PSA is very low & staying low, after no HT for over a year.

You will probably find, interest in Sex will wane & go - but that will eventually return. Daily Tadalafil can help you & your partner in that respect, though it can lead to Heartburn.

I assume you are Virus double vaccinated, as a lot of hospital visits can be risky.

Best of luck. Ask if you have any questions.

Bob

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User
Posted 20 May 2021 at 16:16
My husband had EBRT and HT following a failed prostatectomy. He hated every minute of the HT and stopped it earlier than planned but the RT was a breeze - he continued working full time throughout, went to the gym every day & still played his beloved rugby. No real side effects at all, apart from the occasional afternoon nap towards the end of the RT.

His biggest regret is having the op - if he had known that it would be unsuccessful, he wouldn't have put himself through all the side effects. On the other hand, some men are happy to have the prostatectomy knowing that they will need adjuvant or salvage RT afterwards.

I think with a Gleason 9, it will be worth you talking to the oncologist about the pros and cons of EBRT alone v brachytherapy/EBRT combination.

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

User
Posted 20 May 2021 at 19:58

One of the problems with PCa is that in similar diagnosis, some men respond differently to the same treatment. Lyn has said on more than one occasion that salvage treatment was not very successful and I think this is generally the case. However, as she has just stated, fortunately it worked for her husband, at least so far (because PCa sometimes takes off even years later), and also for a friend of mine who also had RT following failed Prostatectomy. My friend also now wishes he had just gone the HT/RT route too. However, either could have had some radio resistant cancer cells or a new cancer started in the Prostate if it was still there. My PSA, Gleason, staging and type of cancer was the same as my friend. I do think, had I also started with a Prostatectomy like him, rather than RT first, I would not have been in my present position with a small cancerous tumour in my Prostate with the prospect of further HIFU salvage treatment. But is was the same surgeon who operated on my friend who not only suggested I would be better going the RT/EBRT route but personally escorted me to the Oncologist to initiate it.

So treatment results for PCa cannot be predicted with certainty and there will always be cases that are different to more usual outcomes. If things don't go well you wonder if you could have gone a different route and even those who have done well sometimes wish they had had less treatment.

Decisions, decisions!

Edited by member 20 May 2021 at 20:01  | Reason: Not specified

Barry
User
Posted 21 May 2021 at 14:13

Hi Joe, 

Your age and activity sounds similar to me when I was diagnosed.   I was also T2a (told possibly T3a due to proximity to edge of prostate, but found to be T2a) Gleason 4+3 (found to be 4+4 post op).   I guess you're possibly T3a too.

It's a tough decision and it was a great call for the hospital to check with a PET scan.  If that hadn't happened it would possibly have been back fast.   I note you said possibly spread so that's makes your decision more difficult.

I was very keen to get it out and had little desire for hormones or RT.   In your case with a high Gleason and possible spread RT is very likely the best option.  Although I wonder if Open Surgery and taking more out might be an option.  Even so RT is a good option .  As Lyn mentions brachytherapy and EBRT might be a good option and there is someone on here who has written a big report on his treatment that way.  I'm not sure if it's Andy62. 

In my opinion (as a patient) I wouldn't want to waste time with something like brachytherapy focused on the prostate only when I possibly have something untouched elsewhere, even with hormones.

It's a tough decision but starting hormones quickly and having RT when your psa gets to a low level, I think it's said getting it less than 0.1,  is a good option.   You haven't said what your psa is now but they usually say they'll want to keep your on hormones for 3 months.

So all the best,  Peter

 

User
Posted 21 May 2021 at 16:20

Thanks - I will have that conversation with the oncologist - how long did your husband continue with the HT and what were the bad side effects? I understand that different men have different levels of side effect? Was cyrotherapy ever considered?

User
Posted 21 May 2021 at 16:23

barry - sorry what is PCa

User
Posted 21 May 2021 at 16:28

Hi peter

Thanks for that

PSA is now 18 - did you have the Prostatectomy? Did you have any HT?

Thanks

Joe

User
Posted 21 May 2021 at 20:00

Hi Joe,

Sounds like you and I are in a similar situation. I am Gleason 4+4 and my latest PSA was 18.9 (but see my profile for the latest).

My knee-jerk reaction was surgery. I am currently awaiting the results of the usual bone scan to check no external cancer spread. I have also asked for an appointment with the Onco to discuss the RT/HT option.

I am warming to the idea of RT/HT, but it's an incredibly difficult choice to make. It almost seems like a coin toss sort of situation as the pros/cons are abundant for both treatment regimens.

I will make my decision once I have talked to the Onco. I will be interested to follow your own journey.....good luck whatever you decide.

User
Posted 22 May 2021 at 01:09
PCa is abbreviation for Prostate Cancer.
Barry
User
Posted 23 May 2021 at 10:23

You'll also see clinicians use CaP, Carcinoma of the Prostate.

User
Posted 25 May 2021 at 14:23

I watched a good utube video by an american doctor who went through all the HT side effects

https://www.youtube.com/watch?v=efza9vq-cg8

I understand that different men react differently to the therapy - the reaction can be bad in some - I see lyn above talking about her husband giving it up because side effects of HT weren't great, but the EBRT was a breeze.

I also understand remaining or trying to remain reasonably fit helps a lot in curbing the side effects and weight training can counteract the muscle wasting etc.

The idea of having to remain on HT for up 3 years doesnt grip me with enthusiasm, but then I'm wondering if the body adjusts better after time etc?

The gynecomastia is another issue that I understand can be counteracted by brief radiation or drugs - have you any knowledge about this?

I guess having a chat with the oncologist might be a good way forward.

 

User
Posted 28 May 2021 at 14:14

Hi Don1two

Well I have started on the daily Bicalutamide Hormone tablets leading to the first 3 monthly LHRH agonist injection in about 10 days....

I have read and read about side effects etc and was a bit dubious about these drugs, but unfortunately for me it seems the right option now. 

EBRT in about 3-4 months, but I may have to stay on the HT for another 2 -3 years???๐Ÿ˜ช However

I'm reasonably fit - good stiff walk/run most evenings, was a very keen weight trainer before the pandemic and as soon as the gym opens will get back to that as best I can.

I understand a good level of fitness and a bit of the weights is helpful with any side effects.....

The thing I find a little strange is that presently I feel great, healthy (no cancer symtoms at all) and yet I'm having to take heavy drugs and undergo EBRT which will make me feel not 100% to combat the s*** growing in the prostate. Heres hoping it works....๐Ÿ˜

User
Posted 28 May 2021 at 17:31
I understand Joe, I too had no symptoms. Stick with it. It's better than the alternative.
User
Posted 28 May 2021 at 19:47

Keep with it Joe.   Having no symptoms can be a trap.  It's fortunate it was found now.  All the best, Peter

User
Posted 29 May 2021 at 08:17
Joe, I was in a similar position to you. My PSA was 31 on diagnosis in May 2018 and that was felt to be too high for the cancer than the biopsy found, hence there was a strong suspicion of undetectable microscopic spread into the lymph nodes ("micro mets") and a recommendation for HT and "wide beam" EBRT to irradiate not just the prostate for the whole pelvic region.

I didn't find the treatment too bad at all. It was on HT for 6 months prior to RT, and was due to be on it for another 18 months after RT, but I actually stopped it a year after treatment because my oncologist said that research showed that 18 months' HT was just as effective as 2 years. Now just over two years since the end of RT and my PSA was 1.2 at my last test a few weeks ago, so it's all good.

Best wishes,

Chris

User
Posted 01 Jun 2021 at 02:00

Hi Joe,

Well at least you're on the treatment road now. I'm still in the wait between diagnosis and starting treatment. I am leaning towards RT/HT, but waiting for the results of my bone scan 3 weeks ago and then a chat with the oncologist to get my questions answered before making my final decision on treatment.

Know what you mean about feeling fine and fit...it doesn't make sense does it? I think the Youtube series is quite good to explain things. I am admittedly also feeling nervous about the HT side effects, more than the actual RT.

Anyway, good luck. I will be right along myself shortly.

User
Posted 04 Jun 2021 at 14:11

Chris

Thanks for your comment. It's a great forum on Prostate cancer UK - very supportive

I'm due to have a 3 month injection on Monday 7/06 (Decapeptyl from memory), after being on the Bicalutamide for about 10 days. I carry on the Bicalutimide till finished - about 30 days.

Did you have similar with your treatment?

If so, how did you find the combination of the 2 hormone drugs for the period AND

Over your hormone treatment period any major side effects and how long was it before the side effects reared their head??

Would appreciate any advice - Any tips - they say keeping fit - maybe a little weight training, good diet etc....

Cheers๐Ÿ˜ท๐Ÿ˜

Joe

Edited by member 09 Jun 2021 at 14:09  | Reason: Not specified

User
Posted 04 Jun 2021 at 15:22

Hi Don1two

Hope you are well or as well as can be - brothers in arms.

Sounds as though you are going through similar process and thinking to me.

Luckily I've been pretty healthy most of my life. However I was having a blood test for something else last Nov 20 and asked if a PSA test could be included (as a precautionary measure). Well the results changed my life a little, but have become a bit philosophical about the whole thing - nothing we can do I guess, except hope the people in the hospital know what they are doing. This is a timeline of whats happened to me so far....

1. My Blood test had high PSA 22.5 - was sent to NHS Urologist and had another blood test to check - came down to 21

2. Had bone scan about 2 weeks after - clear

3. Biopsy - 3 weeks after with biopsy results another 3 weeks after that - Gleason 9 on one side 6 on the other - staging was a T2a NOMO but high risk or maybe locally advanced.

4. Had MRI about 1 month after - I was concerned about the time things were taking - however I was assured Prostate cancer was slow growing and a few weeks here or there was not going to make much difference. MRI showed that cancer was contained within the prostate.

Urologist and myself/partner discussed options - I was keen to go down the Radical Prostatectomy operation route - had read a bit about it.....

5. Details were sent off to UCL for the surgeons to look at the biopsy/MRI results etc.

6. 1 month after - UCL surgeon came back and wanted me to have a PET scan - more detailed scan - PET haven't been in the UK long apparently - had to go to a mobile unit that makes its way around the country.

7.  1 month after PET scan had meeting with urologist to get the news that UCL weren't prepared to operate as cancer was too close to prostate capsule and may have breached the outer case. Had second opinion at Arrow Park in Liverpool - same opinion came back.

8. Hormone/EBRT considered the best bet....Like you I am a bit concerned about side effects of the hormone drugs ( never been on any long term medication before).

9. So here I am - I'm due to have a 3 monthly slow release hormone injection on Monday 7/06 (Decapeptyl from memory), after being on the Bicalutamide tabs for about 10 days (to prevent testosterone flare) and also carry on the Bicalutimide till finished - about 30 days.

I understand the EBRT (treatment 4-5 weeks - 5 days per week) will be in about 3-4 months or when the PSA has come down to a low level. I also understand I may have to have hormone injections every 3 months for maybe up to 2 years after....

However so far so good - I have asked Cheshire Chris above how he got on with his treatment.....not keen on some of the listed side effects - but I guess it is what it is and side effects are different for different people - fingers crossed.

 

User
Posted 05 Jun 2021 at 12:01

Bon voyage Joe. I guess we will be roughly in lockstep with our treatments, so I will follow your progress.....good luck!

P.S. My bone scan was clear, waiting to see Oncologist on 14/6

Don

Edited by member 05 Jun 2021 at 12:01  | Reason: Not specified

User
Posted 05 Jun 2021 at 13:36

I was put on bicalutamide back in February for one month, and Zoladex was implant in March (scheduled for every 3 months). I am on second month of enzalutamide treatment. The schedule is for 6 rounds of RT in November,; yesterday I had a CT scan to confirm staging so I guess I must await the results of that to narrow down on treatment.

I have had limited side effects from HT - slight hot flushes. I get aches and pains but don't know if that is treatment, cancer or age (67). Initial diagnosis Gleason 8 T3/4 N1 M1 and three mets, two in pelvis (one tiny) and one in shoulder (tiny). Initial PSA 64.7. Down to 0.33 2 weeks ago.

I am positive, careful with what I eat (but not overly so), take a range of supplements (3 apricot kernels, 2000 mg Vit C, tumeric) got a dog (5 km minimum walk a day), electric bike (up to 15 km twice a week) and some weights. I feel better than I have done in years - both mentally and physically.

  

 

Edited by member 05 Jun 2021 at 13:40  | Reason: Not specified

User
Posted 05 Jun 2021 at 14:03
Joe, no, I was on bicalutimide as a "primary" HT, so I took 150mg/day for 18 months. I didn't have the injectable HT.

Everyone gets a different set of side effects, so it's just a matter of wait and see. Ones which almost everyone gets are loss of libido and fatigue. I was also rather fuzzy-headed for a couple of months - just couldn't think clearly - but fortunately that cleared up. I suffered from mood swings and put on weight. I didn't get hot flushes at all.

Very best wishes for your treatment,

Chris

User
Posted 06 Jun 2021 at 13:01

Cayambe

That sounds great for you to date - my age similar to you - like you I'm keen to keep up the exercise and eat healthily...

Best wishes for the future - keen to hear how you get on

User
Posted 09 Jun 2021 at 14:26
Hi everyone

Had 3 mthly Decapeptyl hormone (gonadotropin releasing hormone (GnRH) agonists) injection 3 days ago and carrying on with the Balcalutimide till script finished - end of month.

I have had no real serious side effects from the Bical tabs or the Decapeptyl to date.

However don't know if I'm imagining it or this is something to do with the drug, I have noticed:

1. Really tired last night after walk - but ok now

2. Dry mouth this morning and a bit of a sore throat

3. A few aches and pains but they seem to go away

4. I also had a twinge in the breast area - am I being paranoid??

I have been doing some long walks every (most) evening (5-10km) over the covid period and hope to continue them. I hope to get back into the gym to do some weights also soon.

Any comments on the symptoms anyone? Is this normal?

User
Posted 11 Aug 2021 at 12:40

Hi Don1two

Just a follow up - hope you are well??

I had the month of Bicalutimide and the 3 month Decapeptyl injection and now due for second injection.

Side effects - hot flushes day and night but bearable. I've been walking up to 8km most days to stay fit - might get back to the gym now they have opened. I used to do a lot of weight training before the covid and diagnosis and I have noticed that muscle size is a bit down.

I have been told the EBRT starts in October - so that will be 5 months after starting the hormone treatment. I hope I get through this without too many side effects

I have also been told that I may be on Hormones for 18mths to 2 years.

Just wondered how you were getting on?

Cheers

joe

User
Posted 12 Aug 2021 at 01:32

Hi Joe, so nice to hear from you and very glad that everything is going well in terms of your treatment.  Yes, I have had the same as you in terms of the Bical, however I had zoladex three monthly injection from my GP, so slightly different in that respect. I don't know what the difference is between the two.

Anyway I have to say I have not suffered any side effects so far, 'Touch wood' and hope it stays that way. I think you must be about 3 or 4 weeks ahead of me, I expect to get the radiation therapy towards the end of October beginning of November.

Hey ho.... good luck with everything and your keep fit which I am also doing,  lots of walks and I'm trying a Joe Wicks programme out of one of his books.

Don

User
Posted 12 Aug 2021 at 08:06

Originally Posted by: Online Community Member

Hi Joe, so nice to hear from you and very glad that everything is going well in terms of your treatment.  Yes, I have had the same as you in terms of the Bical, however I had zoladex three monthly injection from my GP, so slightly different in that respect. I don't know what the difference is between the two.

Anyway I have to say I have not suffered any side effects so far, 'Touch wood' and hope it stays that way. I think you must be about 3 or 4 weeks ahead of me, I expect to get the radiation therapy towards the end of October beginning of November.

Hey ho.... good luck with everything and your keep fit which I am also doing,  lots of walks and I'm trying a Joe Wicks programme out of one of his books.

Don

Well I'm about 3 years on from you, Don - & I'm still here!  Yes, the 3 monthly HT - & yes, very important to keep as fit as you can, though you will get tired & weakness will set in, no matter what you do.

When you get to the RT, it is a bit of an endurance test - 20 visits? That's what I had - do you live far from the Hospital? I did. Keep to the diet, you will probably get some side effects - blood in poo, etc. Mine was done in Cambridge - Addenbrooks.

I did get some Proctilitis which I'm being treated for now, delays due to coronavirus backlog. Some of the rectum veins can get damaged during RT.

But the important thing is my PSA is very low & staying low, after no HT for over a year.

You will probably find, interest in Sex will wane & go - but that will eventually return. Daily Tadalafil can help you & your partner in that respect, though it can lead to Heartburn.

I assume you are Virus double vaccinated, as a lot of hospital visits can be risky.

Best of luck. Ask if you have any questions.

Bob

User
Posted 12 Aug 2021 at 21:40

Hi Bob,

Thanks for the well wishes and glad to hear that your treatment is proving to be a success. I am on hormone therapy for only 6-months apparently, and therefore maybe my side effects will be limited by that. I am getting some side effects in terms of needing to visit the loo more frequently at night, however so far nothing else.

I agree with you it's important to keep fit. Fortunately I'm not too far from our treatment hospital, although it will be quite a bind to attend for the 20 daily appointments. If it saves your life however, there's  no argument.

 
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