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Cheshire Chris's Treatment Thread

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User

Posted 16 Aug 2018 at 18:09

I've now officially started treatment, so I'll use this thread to record my journey from here on in.

To summarise, I'm T2C N0 M0 with a template biopsy showing about 60% of cores cancerous, with all but two of those being Gleason 3+3, the other two 3+4. Scans show no bone mets and no indication of lymph node involvement, even though my PSA is 32 (or was in May when it was tested).

The urologist and the MDT recommended against surgery. I've had a long meeting with the oncologist today, and I'm now officially on the HT+RT route. A daily 150mg bicalutamide tablet, and a weekly 20mg tamoxifen tablet to (hopefully!) suppress breast development. Blood test after four weeks to check liver function; if normal the plan is to stay on bicalutamide for two years, if liver function is impaired I'll switch to injections.

The plan is to have RT after 6 months of HT (ie in Feb next year). I asked why not 3 months, and he replied that because my prostate appears to be producing a lot of PSA he wants to give the HT the maximum chance to suppress the cancer cells prior to RT.

I'll be having my RT at the Clatterbridge Cancer Centre near Liverpool, which is the regional oncology centre. I'm told it's a "state of the art" cancer centre, so I feel I'm in good hands.

So, there we are - finally started treatment three and a half months after my initial PSA tests, which feels like an eternity. I asked my oncologist if he thought there was any significant possibility that my cancer was anything other than localised and he said "no", which is reassuring.

I've bought a pill box with compartments for each day of the week, and I'll be taking my first bicalutamide tablet in the morning. Fingers crossed it goes reasonably smoothly!

Chris

Edited by member 16 Aug 2018 at 19:45 | Reason: Not specified

User

Posted 18 Aug 2019 at 11:54

Yesterday was the anniversary of starting my HT. A year on 150mg/day bicalutimide and I'm feeling pretty good. No significant side-effects other than weight gain (which I'm tackling!). Fortunately I seem to have avoided hot flushes, and other common side-effects. I did feel very "woolly-headed" for a few months after starting to take it, but that wore off, fortunately.

I'm due to be on it for another year, although my oncologist said that he may reduce the length of the treatment to 18 months in total (ie another 6 months from now) - he's going to make that decision when he sees what my PSA level is in November, which will be 8 months after finishing RT.

Everything seems to be going very well at the moment. I'm enjoying retirement and life feels good. What a contrast to the way I felt when I was diagnosed; things couldn't have felt any bleaker then. If anyone else is going through a rough time mentally after being told that they have cancer, my advice would be that difficult as it may be to believe, you will come out of the other side of it one day.

Cheers,

Chris

User

Posted 25 Dec 2022 at 12:12

Just wanted to wish everyone here a very Merry Christmas, and hopes for a good 2023. I would have struggled to get through my cancer diagnosis and treatment without the support of this forum - you all mean a lot to me.

Very best wishes,

Chris

User

Posted 03 Sep 2018 at 14:03

Thanks, all. The pain is a lot more manageable today, and the plan is now to discharge me tomorrow. I'm deliberately spending today on the painkilling tablets I'll be sent home with rather than the much more effective IVs, and so far it's bearable. Not great, but bearable, and I am keen to get home.

Recovery will be a long road, though. Because of the large incision through my abdominal muscles they had to make to get my kidney out through, I can't lift anything that weighs more than about a kg, and when I get out of bed or a chair I have to use my arms rather than my tummy muscles to do so. Doing otherwise is quite agonisingly painful!

Still, I'm on the road back to recovery now, and no more kidney tumour!

Chris

User

Posted 23 Apr 2024 at 14:03

Latest PSA results, 5 years after finishing RT and it's all good. My PSA has fallen from 1.2 to 1.0 again, which seems to be its nadir. Last few results are:

1.3: Jan 22

1.2: Apr 22

1.0: Oct 22

1.2: Apr 23

1.2: Oct 23

1.0 Apr 24

I suspect that in my phone consultation this time they're going to move me from six monthly to annual checks given that everything does seem to be pretty stable now. This is the first checkup I managed not to worry about!

Hope everyone's doing OK.

User

Posted 16 Aug 2018 at 18:09

I've now officially started treatment, so I'll use this thread to record my journey from here on in.

I'll be having my RT at the Clatterbridge Cancer Centre near Liverpool, which is the regional oncology centre. I'm told it's a "state of the art" cancer centre, so I feel I'm in good hands.

I've bought a pill box with compartments for each day of the week, and I'll be taking my first bicalutamide tablet in the morning. Fingers crossed it goes reasonably smoothly!

Chris

Edited by member 16 Aug 2018 at 19:45 | Reason: Not specified

User

Posted 04 Feb 2019 at 16:17

Had my RT planning session today. It all went fine, although (as expected) the thing with the enema wasn't that much fun! I'm now the proud possessor of three tattoos - a cross on each hip and another above my pubic bone, to align the RT machine.

My actual RT starts next Monday. I'll be having 32 fractions, and my appointments are at 1145, which is a convenient time for beating the traffic, so that's all good.

I'll be seeing my consultant once a week during the RT. Had another PSA test today to act as a baseline for the RT.

So all as good as one might reasonably expect.

Chris

User

Posted 03 Apr 2023 at 19:38

Had my 4th annual thorax + abdomen CT scan with contrast marker (which makes me extremely nauseous) at Arrowe Park Hospital on the Wirral on 9th March as routine follow-up for my kidney cancer. A somewhat nerve-wracking three and a half week wait for the scan to be reported, but got the "all clear" phone call this morning. Arrowe Park operate an excellent "self-care" programme for kidney cancer patients, and the Macmillan nurses who run it are wonderful.

So that's another one ticked off the list. Six-monthly PSA test in a fortnight 🙂.

Chris

User

Posted 23 Oct 2023 at 17:14

I've got my results back. Now 4.5 years since RT. My PSA is 1.2, which is exactly the same result as I had six months ago in April. My post-RT results have been:

2.0: Oct 19

1.4: Apr 20

1.5: Oct 20

1.5: Mar 21

1.2: Oct 21

1.3: Jan 22

1.2: Apr 22

1.0: Oct 22

1.2: Apr 23

1.2: Oct 23

Huge, huge weight off my mind. Waiting for test results seems to get more and more stressful every time, and each test I work myself up into a panic and convince myself that this is the time that it's going to show recurrence. Stupid, but it's just the way I am.

This calls for a refreshing cup of tea to celebrate. Now I can put it out of my mind for another six months.

User

Posted 29 Oct 2024 at 12:33

Phone consultation with a specialist cancer nurse from Clatterbridge yesterday. Everything fine and we mutually agreed that I'd move from six monthly to annual testing, so no more testing until next October.

Feeling quite happy!

Chris

User

Posted 09 Nov 2018 at 20:36

Originally Posted by: Online Community Member

You're very kind, Chris, but I'm the last person in the world you'd call "courageous"! There are people on this site who are far, far worse off than me, and I'd much rather not be having to deal with any of this stuff. The only good news in any of this is that, thus far, the treatment's been pretty successful, and I take the view that you've just got to try to handle things one step at a time. I'm not looking forward to my RT next Feb at all, but again it needs doing so I'll deal with that when it happens. At least I've got a couple of nice trips arranged for between now and the RT.

Cheers,

Chris

update from me Chris, had my review today at the 8 week post RT point. This is pretty standard, Oncologists all say you need this period for things to settle down. To the point, after weeks of agonising waiting my PSA At review was 0.5. This is very good I’m told and means the RT was a success. I asked the oncologist if I could stop HT after 18 months, she reinforced 3 years was recommended for people like me in the Gleason 9 club, but she fully supported my QoL reasons to stop at 18 months. I’ll be on 4 monthly PSA tests for the next year, then as I’m stopping HT early, 4 monthly for another year. All I all the best outcome I could have had. So don’t dread your RT mate, it’s vital and does the job. I’m always around if you want to chat about the whole RT thing

alan

User

Posted 10 Apr 2019 at 18:46

It certainly is. I had a period of a couple of weeks where I wasn’t able to go any longer than 45m between peeing, and that results in major sleep deprivation. I’m very happy that it’s over!

User

Posted 30 Oct 2019 at 16:31

Excellent news - my PSA is now 2.0. That’s better than I’d dared hope for, given that my oncologist said he’d regard my RT as a success if my PSA was below 2 at nadir, and that’s probably still a year away. I really couldn’t be happier. All the indications are that my RT was successful, and that’s a huge weight off my mind.

Cheers,

Chris

User

Posted 22 Mar 2021 at 15:24

Email from my consultant about my annual CT scan as a follow-up to my kidney cancer:

"the scan has been reported and it is all good news. There is no evidence of recurrence or metastasis (spread)."

That's a relief. I put it out of my mind in between scans, but I must admit that I do get stressed waiting for results!

I'm fortunate to have a great consultant who I can email at any time.

Chris

Edited by member 22 Mar 2021 at 15:24 | Reason: Not specified

User

Posted 15 Mar 2022 at 17:38

Great news from one Cheshire Chris to another 😆

User

Posted 25 Apr 2022 at 19:05

Mate that’s REALLY good news and I’m so pleased for you. I’d be a liar if I said I didn’t get stressed with results , but ever since deemed incurable I tend to just crack on with work and keep myself occupied. I guess what will be will be and I can’t change anything. It was emotionally very tough waiting 5 weeks for my latest bone and ct scan results , even though the psa was still good. In honesty I’m more at the stage where I’m concerned about freedom to travel and get insurance and pack in as much as I can , than worry about bad results because they are inevitable ( agent Smith , Matrix ).

Keep on soldiering on 👍👍

User

Posted 19 Oct 2022 at 10:37

Got the results back quickly, thankfully, and it’s good news. PSA is 1.0, which is the lowest I’ve had so far. My recent results are:

2.0: Oct 19

1.4: Apr 20

1.5: Oct 20

1.5: Mar 21

1.2: Oct 21

1.3: Jan 22

1.2: Apr 22

1.0 Oct 22

So I’m very happy with that!

Cheers,

Chris

User

Posted 19 Oct 2022 at 21:37

That makes good reading. Great result! All the best, Peter

User

Posted 21 Apr 2023 at 07:05

Thanks, all. Over four years now since I finished treatment, but the anxiety when it comes to waiting for test results never goes away 🙁.

Chris

User

Posted 23 Oct 2023 at 23:00

Great news Chris. I think you and I are considered cured as long as it doesn't go above 2.0 plus nadir. I'm determined that if mine starts to slowly rise I'll just brush it off until it gets to BCR, whether that will happen in practice we shall see (or hopefully we won't).

Dave

User

Posted 14 Oct 2024 at 15:47

Blood test at 8:40 this morning and the results available on my GP's online system at 3pm, which is pretty good! It's now six and a half years since my diagnosis and my PSA remains stable at 1.0, which is the same as it was in April. My last few years' test results are:

2.0: Oct 19

1.4: Apr 20

1.5: Oct 20

1.5: Mar 21

1.2: Oct 21

1.3: Jan 22

1.2: Apr 22

1.0: Oct 22

1.2: Apr 23

1.2: Oct 23

1.0 Apr 24

1.0 Oct 24

I'm beginning to think that it's remotely possible that I've beaten this thing! How likely is it to return after this many years? I just get so stressed waiting for test results that it would be wonderful to not have to worry. Probably an impossible dream, I know.

User

Posted 17 Aug 2018 at 07:53

I coped with Bical and weekly Tamox with no issues and no breast soreness or growrlth for approx 11 months. It reduced my psa from 43 to eventually 0,33 over that period. I’ll never know if I did the right thing but I’ve constantly rejected RT post surgery as they said I must have micromets and it wouldn’t cure me. However they are now saying that if 2 PET scans show nothing in my body then it must be in the bed !?!?!? However the scans showed nothing there either. I did have slight positive margins on my bladder , but not enough to now be giving me a psa of approx 50 again. Decision time next JAN maybe so I’ll get on with living. I feel you may have done the right thing. I never lost any libido at all but not sure about ED as it took ages to recover from surgery. Good luck mate

User

Posted 21 Aug 2018 at 20:02

I've just got home from seeing my kidney surgeon. He wants to do a robot-assisted partial nephrectomy (ie partial removal of a kidney) to remove my kidney tumour early in September, so fingers crossed it'll be done the week after next. That should be a complete fix for my kidney cancer, but they'll only know for sure once they look at the surgical margins after the operation of course.

This is the final thing wrong with me, so I feel as though I'm well down the road to complete recovery now!

Chris

User

Posted 31 Aug 2018 at 16:48

All the best for tomorrow and the outcome Chris

Cheers Bill

User

Posted 02 Sep 2018 at 08:29

Well, here I am in hospital. Unfortunately they had to remove my entire kidney (which I always knew was a possibility) - the surgeon's coming to see me later today to explain why. Had a reasonable night once they got the pain under control, which took a while. We'll see how it goes recovery-wise. Feeling a lot better this morning than I did last night.

Chris

User

Posted 11 Sep 2018 at 14:40

So pleased to see this - don't push yourself too hard though

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

User

Posted 12 Sep 2018 at 18:30

Sorry to hear that, Chris. I’m in no pain now (that disappeared when the surgical staples came out); it’s literally just that the main incision is sitting about an inch below the level of the surrounding skin (or fat, to be more accurate!) because it’s pulling everything inwards. As you rightly say, it’s early days yet - only 11 days since major surgery, and the surgeon told me beforehand that it would probably take 6-8 weeks to recover from it.

Chris

User

Posted 11 Oct 2018 at 16:48

Cheers,

Chris

User

Posted 18 Nov 2018 at 18:49

Been a while since I posted, so I thought I'd add a quick update.

I've now been on bicalutamide for three months, and it's not been particularly pleasant. The physical stuff hasn't been too bad; I've had a total and utter loss of libido, which I guess is a good thing in that it shows that the drug is working. My penis has lost almost all sensation and just feels like a piece of dead meat. Distinct "shrinkage" caused, presumably, by the lack of "exercise". Things are still functional - if I set my mind to it I can ejaculate, but all that comes out now when I do so is about 3 drops of liquid, which I guess again I should regard as a positive sign that the HT is working. I've so far avoided things like hot flushes.

The worst thing about being on the bicalutamide is that it's completely destroyed my ability for sustained thought or serious concentration on anything - it feels as if my head is stuffed with cotton wool, if that makes any sense - and I just find myself drifting off into a sort of empty nothingness unless I make a conscious effort to stay "with it". Is this a normal side-effect of bicalutamide, I wonder?

I'm seeing my oncologist again next Monday, 26th Nov, so in preparation for that I had another PSA test on Friday, my first one since May. At the last test my PSA was 32. With all the symptoms I'm experiencing I'm sure the HT must be working, but it is a little stressful waiting for the test result. I hope I'll get it on Tue or Wed this week.

I'm almost completely recovered from the kidney surgery now - just a muscular twinge to remind me if I overdo things! I had a CT scan to check the progress of both the kidney surgery and the aneurysm surgery the week before last and I'm seeing the surgeon this Wed to find out the results of that.

I went back to work part time the week before last, which has gone reasonably well. The mental "wooliness" is proving a challenge; I'll just have to hope I can learn to live with it. If not I'll have to bring forward my retirement, which wouldn't be the worst thing in the world!

That's about it from me, I think. I'll post again when I know my PSA score. It's tough waiting for it!

Cheers,

Chris

Edited by member 18 Nov 2018 at 18:51 | Reason: Not specified

User

Posted 31 Jan 2019 at 07:46

I have my RT planning session on Monday, with treatment starting a week later (11th Feb). I’m told that I’ll be having 30 fractions, so 6 weeks in all. I have to admit that I’m a little stressed about the RT; not so much the treatment, but more the potential for long-term side-effects and bowel/bladder issues.

I know the important thing is to get the PCa sorted, and this will hopefully be the final stage in what’s been a pretty horrendous year for me, but I love to travel, and long-term side-effects that kept me “house-bound” would be hard to take. As described in another thread, I had hoped to get SpaceOAR rectal spacer inserted to reduce the risk of bowel damage, but although my medical insurers approved it, the clock ran out in terms of finding somewhere to have it done, and I didn’t want to delay my RT.

Oh well, just have to hope that I’m not one of the people who end up with major side-effects. I’m not bothered in the slightest about ED-related stuff (that’s just not an important part of my life), but I do have a horror of incontinence.

Chris

User

Posted 10 Feb 2019 at 08:48

RT starts tomorrow. 32 fractions at 11:45 every day at Clatterbridge. I must admit that I'm a little stressed about the possible side-effects, but I know that I need to just get through it and accept whatever comes my way. Clatterbridge is a specialist cancer centre, and I know I'm in good hands. All the same, knowing all that doesn't take away the nervousness!

Oh well...

Chris

User

Posted 05 Mar 2019 at 13:27

I've reached the half way point in my RT! 16 fractions completed, 16 more to go. To quote Churchill, "This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." . I feel like this is an important milestone.

Cheers,

Chris

Edited by member 05 Mar 2019 at 13:56 | Reason: Not specified

User

Posted 31 Mar 2019 at 09:55

Thanks, DR. Everything's fine again now I'm taking the Tamsulosin again. Had a much better night last night.

Cheers,

Chris

User

Posted 19 Apr 2019 at 08:50

Hi Chris

I've been following your thread with interest.

I've got 2/20 RT sessions left next week but for the last week I've suffered from proctitis probably due to the beam hitting my bowel as well as my prostate. My Onco says its a common problem when radiating patients with enlarged prostates, he has given me fybogel which helps bind my poos, downside is fybogel itself causes flatulence and bloating so each time I feel the need to do something I have to visit the khasi, better to be safe than sorry!

Consequently not straying too far from home and had a couple of close calls on the M55 on my way to RT.

Onco reckons 3/4 weeks after treatment the proctitis should settle down but he also said don't expect your bowel to be as good as it was before and to be prepared for different bowel habits in the future (whatever that means - 3 visits a day instead of 1?).

John

User

Posted 20 Apr 2019 at 16:17

Happily, the proctitis has disappeared again, so everything's fine once again.

I'm going to stop taking Tamsulosin tomorrow to see if I'm able to manage without it. Next week marks a month since the end of my RT, so I'm hoping that the radiation-induced inflammation of the prostate which necessitated the use of Tamsulosin will have subsided. Obviously I'll start taking it again if I do experience problems.

Chris

User

Posted 22 Apr 2019 at 13:48

Anyone diagnosed with cancer is entitled to a “Medical Exemption” NHS card giving free prescriptions. I hope you have one, DR! If not, get a form from any chemist and get it signed by your GP.

User

Posted 22 Apr 2019 at 20:17

You may need to beat your surgery reception with a large nailed stick to get one. Mine played absolutely dumb on the subject as they did not want to pay out so I had to get the oncology nurses at the hospital to sort one out for me.

Unsurprisingly enough my surgery has a 1* rating on the NHS rankings.

User

Posted 02 Aug 2019 at 09:54

Originally Posted by: Online Community Member

Nice one Chris. I was retired at 46 and have worked solid from 49. I’m now 52. God being retired is Soooo boring. Depends on your personality. To be fair if we didn’t have a 9 yr old we would prob have a camper van and be holidaying 24/7 , but we are a bit tied. That’s why I want to work and get enormous joy from my present job.
Happy retirement mate

Thanks, Chris. No danger of being bored. I’m going to go back into full-time study and do a Master’s degree, which is something I’ve had planned for years, so I’ll be very busy indeed!

All the best,

Chris

User

Posted 02 Aug 2019 at 09:58

My pension lump sum showed up in my bank account this morning, so that relieves my “what if they don’t pay me?” anxiety. I’m all set now!

Chris

User

Posted 27 Sep 2019 at 18:15

I've certainly been relatively untroubled by side-effects, Chris. Even this latest issue is not that big a deal.

Best wishes,

Chris

User

Posted 31 Oct 2019 at 08:53

Nice one. The future is looking brighter for you now.

Ray

User

Posted 14 Nov 2019 at 23:35

I remember our first chat on the phone Chris, i'm overjoyed to hear your news my friend, long may it continue

Alan

User

Posted 15 Nov 2019 at 08:36

Thanks, everyone, and thank you in particular, Alan, for the support you gave me when I was going through some pretty tough times mentally after my diagnosis. It's been a long and occasionally difficult journey, but I'm very much feeling now as if the end is in sight.

Chris

User

Posted 16 Feb 2020 at 11:20

Good post Chris. We, of course, were treated at the same centre albeit under different consultants. My cancer has reared its ugly head again but here's the thing, the PSA level is less than half what it was on diagnosis and there is treatment available which I start tomorrow (already on the bicalutamide).

I have just watched a YouTube clip from Dr Scholz of the US PCRI on survival rates in the USA - 99% at 5 years, 98% at 10 years and even 94% at 15 years. These figures come with the health warning that they are based on early diagnosis which is more common in the USA because screening is much more common (as it should be here by the way).

Dr Scholz also makes the point that by definition these survival figures are based on people diagnosed 10 and 15 years ago - treatment has moved on since then.

But you make an excellent point about re-appraising your life and priorities.

User

Posted 20 Mar 2020 at 17:54

Fingers crossed for you Chris, you deserve some better luck

🤞

Cheers

Bill

User

Posted 20 Mar 2020 at 19:38

Best wishes mate

User

Posted 20 Mar 2020 at 20:51

I will be keeping everything crossed for you as well x

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

User

Posted 21 Mar 2020 at 07:07

Fingers crossed for you hope for positive results. xx

User

Posted 21 Mar 2020 at 09:58

Hope you get good news Chris.

Ido4

User

Posted 21 Mar 2020 at 12:04

Hope all goes well Chris.

User

Posted 21 Mar 2020 at 12:41

All the best Chris from a fellow Clatterbridger!

User

Posted 03 Apr 2020 at 00:47

Great news Chris, so pleased for you.

Good luck with your next PSA result.

Ange

User

Posted 03 Apr 2020 at 02:52

Fantastic x

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

User

Posted 09 Apr 2020 at 22:37

Congratulations Chris really good news!
cheers me up on my birthday

Alan

User

Posted 09 Apr 2020 at 22:45

Lovely news - happy Easter!

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

User

Posted 09 Apr 2020 at 22:54

Really good news.

Ido4

User

Posted 12 May 2020 at 22:30

Boom! Sorted!

User

Posted 17 Oct 2020 at 00:41

Good luck Chris.

I don't seem to get PSA anxiety, except in between having the blood taken and getting the result. The lab turns it around in a few hours, and if my GP requests it, I get it the same day or next day from their online system. If the hospital requests it (same lab), my GP can't see it and I have to email the CNS for the result. I may get more PSA anxiety when I come off hormone therapy - that's the next real indication if the RT treatment worked or not.

I have on occasion doctored the hospital blood test form to add my GP onto it, and then I see it on their online system.

Well done on the weight loss too.

User

Posted 17 Oct 2020 at 11:45

PSA test anxiety never goes away for me.
Here’s hoping for a good result.

Ido4

User

Posted 17 Oct 2020 at 21:08

Good luck

User

Posted 18 Oct 2020 at 20:30

Chris 15 years on PSA anxiety still kicks in. I'm trying to make excuses for not booking next one for end of month.

Good luck on next result.

Ray

User

Posted 21 Oct 2020 at 19:12

Pretty good result to me.

User

Posted 21 Oct 2020 at 20:30

Good news Chris

User

Posted 21 Oct 2020 at 21:03

Good result, CC 👍

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

User

Posted 22 Oct 2020 at 20:49

Great result!

User

Posted 04 Nov 2020 at 12:02

Great news Chris. Hope you can enjoy the festive season as much as possible given Covid. 🍻

User

Posted 04 Nov 2020 at 12:06

Love it. Xmas blow-out mate

User

Posted 04 Nov 2020 at 14:25

Great news Chris. 👍

User

Posted 06 Feb 2021 at 21:40

Hope everything goes well. Defo correct about the anxiety as it keeps one frosty that’s for sure 👀

User

Posted 06 Feb 2021 at 21:56

Best wishes Chris. God bless the NHS heh in these trying times. Best of luck on your results 🤞

User

Posted 07 Feb 2021 at 13:21

Originally Posted by: Online Community Member

Best wishes Chris. God bless the NHS heh in these trying times. Best of luck on your results 🤞

Thanks, Chris. Yes, my consultant said he was requesting my scan (which was actually due in mid March) early because of potential delays, but it actually came through quickly, so I'm ending up having it a month early.

Best wishes,

Chris

User

Posted 08 Feb 2021 at 10:41

I hope all is clear in the scan Chris. The “has it come back” worry never goes unfortunately. Take care,

Ido4

User

Posted 08 Feb 2021 at 10:49

Good luck Chris , hope all goes well 👍

Phil

User

Posted 22 Mar 2021 at 15:34

Great news Chris 👍 Long may it continue.

Phil

User

Posted 22 Mar 2021 at 16:14

That’s great news and great that your Consultant emails you.
We sat waiting on a telephone appointment with the oncology nurse from 1pm today. At 2.30pm I phoned and was told she was on annual leave 😳 glad I chased the post RT PSA results myself on Friday.

User

Posted 22 Mar 2021 at 23:17

Great news Chris

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

User

Posted 23 Mar 2021 at 03:09

good news Chris

regards barbara

User

Posted 29 Apr 2021 at 15:05

That’s a great result Chris 👍

Phil

User

Posted 29 Apr 2021 at 15:39

Fingers crossed, Phil! The nurse said to me last time that random ups and downs are entirely normal. What causes concern is either a large jump (eg going from 1.5 to 4) or a steady increase over several tests.

Chris

User

Posted 30 Apr 2021 at 12:49

Great news Chris.

Ido4

User

Posted 12 May 2021 at 18:39

I've been having persistent pain in the "tail bone", so had an MRI scan last Wednesday. Had a text message from my GP today:

Dear Mr XXX,

We have your MRI back. I am please to say there is no signs of any significant pathology. There is no sign of any metastatic disease. There is some minor wear and tear. If your back / coccyx is still causing discomfort we can refer you to physio. Please let me know if you would like referring.

Thanks, James YYY

So that's good news. Unlikely to have been anything sinister I know, but with two cancer diagnoses there's always that "What if..." at the back of my mind.

Chris

User

Posted 13 May 2021 at 12:52

That is reassuring Chris.

Ido4

User

Posted 19 Oct 2021 at 11:48

Great news Chris! 🍾🍻

User

Posted 19 Oct 2021 at 12:06

Well done chris, hope there is chocolate on those digestives :)

Cheers,

Nick

User

Posted 19 Oct 2021 at 12:14

Good news Chris, and you can relax a bit now 👍. Let’s hope it stays low for a long time.

My blood test tomorrow which is first one after going back on HT… be nervous till I see consultant in a couple of weeks.

Take care

Phil

User

Posted 19 Oct 2021 at 13:50

Great news Chris!

Arthur

User

Posted 19 Oct 2021 at 18:05

Yay!!!! 🎉🍷

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

User

Posted 19 Oct 2021 at 18:39

Nice result, I like it.

Dave

User

Posted 21 Jan 2022 at 15:00

Only three months since my last test, but my GP was doing some other bloods tests so said may as well check PSA. Came back as 1.3 compared to 1.2 in October, but 1.2 was probably the nadir and it's fluctuated up to 1.5 since last March, so I think all's well.

All the other bloods (blood counts, blood sugar, liver and kidney function) were fine too 🙂.

Cheers,

Chris

User

Posted 21 Jan 2022 at 16:17

Chris thanks for all your advice

User

Posted 21 Jan 2022 at 16:39

Nice one Chris!

User

Posted 21 Jan 2022 at 17:21

Great result Chris! 🍻

User

Posted 21 Jan 2022 at 17:29

Good news Chris

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

User

Posted 21 Jan 2022 at 20:55

Nice Chris. Good result and many more !

User

Posted 22 Jan 2022 at 22:46

Good news Chris. All the best.

Ido4

User

Posted 06 Mar 2022 at 18:50

I thought it was about time I added a profile picture 😁.

User

Posted 06 Mar 2022 at 21:33

Good luck Chris. I’m in tomorrow also nearly 7 years down the line for a full MOT. Whole body CT , full bloods and psa , and then Nuclear Bone Scan. All important to me for the chance to travel this year. At least I’ll know where I’m at. I tend not to stress so much as I used to as worrying changes nothing of course :-))

User

Posted 06 Mar 2022 at 21:35

good luck to you as well Chris 👍

User

Posted 07 Mar 2022 at 14:24

Had my CT scan at 12. Went fine other than that on the first attempt to pump the contrast medium in through the cannula in my arm, the cannula cap came off and the contrast medium (bright purple 😁) went all over me rather than into me. I suspect that my jumper will never be the same again! They removed the first cannula and had another go in my other arm (sometimes I feel like a human pin cushion...) and that went a lot better.

Contrast medium always makes me feel rather nauseous, but no issues other than that. Weird feeling when they inject it - a wave of heat goes through my entire body and then it feels as though I'm wetting myself (fortunately not in reality!) and a strong metallic taste in the mouth.

Results in about two weeks, fingers crossed.

Chris

Edited by member 07 Mar 2022 at 14:50 | Reason: Not specified

User

Posted 07 Mar 2022 at 22:30

Glad it went ok apart from the sweater !! I had mine at 1 pm today. No special dye drink anymore but had the Iodine contrast injected also via canular. To be honest I’m so used to regular hot flushes from injectable HT that I didn’t know the difference this time. They left the Canular in so I could go straight up to Nuclear Medicine for the bone scan. Dear lord the 3 hour wait from tracer until scan. I got home at 7 pm from arriving at lunchtime. Nice pint on the way home though as they said to drink plenty of fluid 😀

User

Posted 07 Mar 2022 at 23:42

Best of luck to both of you on your scan results 👍🏽

User

Posted 08 Mar 2022 at 07:50

good luck with your scan results Chris.

barbara x

User

Posted 08 Mar 2022 at 09:30

Good luck to both of you two Chris’.

User

Posted 08 Mar 2022 at 18:59

Thanks, everyone, and best wishes to you, Chris J!

Chris

User

Posted 16 Mar 2022 at 07:09

Great news Chris x

regards barbara

User

Posted 25 Apr 2022 at 15:30

My 6-monthly phone appointment with my excellent cancer nurse is next week, so I had a preparatory PSA test on Thursday. The results have come back as 1.2, which is good. I had my RT in Feb/Mar 2019, and my PSA history since then has been:

2.0: Oct 19

1.4: Apr 20

1.5: Oct 20

1.5: Mar 21

1.2: Oct 21

1.3: Jan 22

1.2: Apr 22

So it seems that approaching three and a half years after RT I'm still at my nadir, which is great.

Waiting for tests never gets easier. If anything I find myself more stressed out waiting for my test results now than ever. In the future I'll try to have a test on a Monday or Tuesday so I won't have to wait over a weekend, I think 😁. I don't know about anyone else, but for me the mental aspects of prostate cancer have been worse than the physical ones, and it's a life sentence. Oh well, I can put it out of my mind again until November now.

Cheers,

Chris

Edited by member 25 Apr 2022 at 15:37 | Reason: Not specified

User

Posted 25 Apr 2022 at 15:38

Good news Chris 👍.

And I agree the mental side of this disease along with the HT have wreaked havoc with my mind. Not so good at the moment waiting to find out if my PCa has become castrate resistant….

Take care

Phil

User

Posted 25 Apr 2022 at 17:13

It’s been awhile since I finished treatment. My Triptorelin effect expired October 2020. I was undetectable PSA then, now I’ve had three six monthly checks all at PSA 0.4

User

Posted 25 Apr 2022 at 22:00

Yes Chris, I passed the 70 mark 2 weeks ago and decided to get on with life, got a new grandson very late December, a surprise from my 42 year old youngest girl! Something to look forward to is every weeks visit

shes decided to marry long term partner end of May he’s 51 so I think they must have worked hard at it😂

It seems such a long time ago we were both in the real dark times

User

Posted 21 May 2022 at 20:30

Hope you are sorted soon like most off us on here been through the mill enough let's all have a bit off luck for a change hope you get treatment asap 👍

User

Posted 21 May 2022 at 20:49

Hi Chris

I agree just as things seem to be going okay there is always something going to jump up and kick you in the nuts

I have been feeling really good lately and two weeks ago I let a friend talk me into cycling the coast to coast route from Whitehaven to Tynemouth. Everything went okay and I survived it over the three days. Two days after getting back my left eye started going black from the bottom upwards. Luckily I saw a specialist who told me I had a detached retina I needed immediate surgery which I got at a specialist eye hospital near me. While I was there they checked my right eye and found a tear in my eye retina which they fixed at the same time.

Initial treatment was seven days laying on my side to allow the retina to reattach after surgery, painful as hell and boring too! I’m allowed up tomorrow for the first time can’t wait

User

Posted 22 May 2022 at 09:05

Hope the treatment works 100% - wishing you a speedy recovery

User

Posted 01 Aug 2022 at 07:17

Chris, happy birthday,🎂.

User

Posted 01 Aug 2022 at 07:42

Nice one Chris and Happy Birthday 🥳

That’s my next goal but very unlikely. Strange isn’t it when you get your new debit card that lasts 10 years or a value years supply of cod liver oil , then wonder if you’re still gonna be around.

Have a good celebration 👍👏

User

Posted 01 Aug 2022 at 08:02

Happy birthday Chris...

User

Posted 01 Aug 2022 at 09:29

Hi Chris

hope you had a good birthday. x

regards barbara x

User

Posted 01 Aug 2022 at 09:47

Happy 60th Chris, hope you have a lovely day celebrating x

User

Posted 01 Aug 2022 at 10:00

Happy Birthday Chris, have a lovely day 🥳

User

Posted 01 Aug 2022 at 12:32

Happy birthday, enjoy.
Leila x

User

Posted 02 Aug 2022 at 17:14

Chris,

I have just finished reading your story(to date) and I find it both informative and inspirational, thanks for sharing it. I am very early in this journey and at times finding it hard to come to terms with my diagnosis. The last few days have been tough with mood swings partly down to anxiety (uncertainty over diagnosis and treatment), and partly down to the changes going on in my body. It’s a strange feeling of sadness and emptiness is the best way I can describe it. Your post has helped me considerably and I’m determined to keep as active and busy as possible as I find that keeps me feeling positive.
So, it’s back to long walks. I also find getting out on my eBike a great way of both having fun and keeping fit.. I bought this during lockdown and it kept me going and smiling through these difficult times. it’s one of the best investments(not cheap) I have made. It is so much fun-some people say it’s cheating but if you’ve not been a regular cyclist it’s a great way of getting into it and keeping fit without overdoing it if your energy levels are not quite what they were….and you can always switch your motor off(as I do frequently) for a more challenging ride.

I will also be rejoining my local council gym to try and build up my muscles as I know muscle loss is a side effect of hormone therapy.

so thanks again and all the best for the future - I will continue to follow your journey closely.

Derek

User

Posted 02 Aug 2022 at 22:47

Belated Happy Returns Chris!! Again, many thanks for all the advice early on in my diagnosis, it was extremely helpful in negotiating the minefield of which treatment option to choose. Cheers!!

User

Posted 04 Aug 2022 at 06:17

Happy belated birthday

User

Posted 08 Oct 2022 at 21:59

Good luck Chris. You deserve to be treated whatever , as if you’ve sought treatment then you are anguished. And you didn’t deserve cancer. Luckily neither 1 yr of Bical and 2 yrs of Deca have caused me any problems moob-wise.

User

Posted 08 Oct 2022 at 23:54

Just Google 'best compo faces' and then practice in a mirror.

In all seriousness, I think the important thing is not to go into the appointment and minimise how you are affected. I think your default position is to make the best of things and downplay the difficulties but the breast reduction clinic is not the place to do that!

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

User

Posted 18 Oct 2022 at 13:00

Fingers crossed for you CC

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

User

Posted 18 Oct 2022 at 13:06

True we are always anxious good luck Chris I am sure you will be fine 👍

User

Posted 18 Oct 2022 at 18:45

Good luck Chris. My 4 month psa nearly 7 1/2 yrs on with T4 is on Thursday !! If I’m honest I’d forgotten. Yes it can be very frightening and was in the past for sure , but these days I’m so busy throwing myself at life that it dusts the PCa out of my mind mostly. Still doing a bit of farming and school volunteer reading. Just started as lollipop man at the same school , and have now joined our local model airplane club learning to fly a 1.5 metre wingspan trainer. I’ve not got the time to worry about it 😆😆😆

Good luck and keep the faith 🙏

User

Posted 19 Oct 2022 at 08:11

Good luck CC...

Glad to hear you are still enjoying a bit of my farming CJ..

My latest toy is an amazing little drone I had as a 45 year long service present, I use it to check my sheep on my "retirement farm". Another great distraction from PSA anxiety.

User

Posted 19 Oct 2022 at 12:14

Fantastic news Chris 😁

User

Posted 19 Oct 2022 at 13:00

Originally Posted by: Online Community Member

Sounds as though you're keeping yourself busy, Chris! My main interests are music and art. I play English folk music on a variety of different instruments. None particularly well, but I thoroughly enjoy it and meet people too, which is the important thing 🙂. Same for painting - it's social and fun.

Very best wishes for your test tomorrow.

Chris

User

Posted 19 Oct 2022 at 13:18

Brilliant news Chris, really pleased for you.

I know what you mean about being able to give good advice about not over worrying but not taking that advice yourself 🤦🏻‍♀️

I was listening to a Gaby Logan podcast about her husband being diagnosed with PCa. Robs surgeon was speaking on it and said how after the op (and of course relatable to other PCa treatments) PSA meaning changes from Prostate Specific Antigen to Persistent Stress and Anxiety! Made perfect sense to me!

Congrats again on a great result 👍

User

Posted 19 Oct 2022 at 13:49

Fantastic news Chris. Very pleased for you.

Ido4

User

Posted 19 Oct 2022 at 20:59

Very nice result Chris. BTW I make some awful scraping noises on a fiddle. I've just started inflicting it on a local session.

Dave

User

Posted 25 Dec 2022 at 12:21

All the best Chris, and many thanks for your sound advice too. Nick 👍🎄

User

Posted 26 Jan 2023 at 03:04

Originally Posted by: Online Community Member

Good luck CC...
Glad to hear you are still enjoying a bit of my farming CJ..

My latest toy is an amazing little drone I had as a 45 year long service present, I use it to check my sheep on my "retirement farm". Another great distraction from PSA anxiety.

While reading this good thread, I noticed your post. It's good that we can find ways to deal with anxiety - this is a big step towards a successful recovery.

Edited by member 03 Feb 2023 at 03:41 | Reason: Not specified

User

Posted 03 Apr 2023 at 19:50

Good news Chris very pleased for you hope psa remains stable all the best gaz 👍

User

Posted 03 Apr 2023 at 20:32

Great news Chris, hope the PSA result is equally as good.

Take care.

Ian

User

Posted 03 Apr 2023 at 21:16

Really pleased to hear that Chris and likewise I hope your PSA test brings you good news.

User

Posted 03 Apr 2023 at 22:49

Epic news Chris. I hate the scans and waits.

User

Posted 04 Apr 2023 at 09:01

Great news Chris. Hope the PSA test is just as good 👍

Phil

User

Posted 04 Apr 2023 at 09:32

That’s great news Chris. Hope your PSA test result is good news too.

Ange x

User

Posted 04 Apr 2023 at 17:22

Great news Chris.

Ido4

User

Posted 04 Apr 2023 at 18:54

Good news. Good luck with the psa test.

User

Posted 20 Apr 2023 at 13:53

Understand the concern. Maybe have another in 3 months as ideally ~3 data points are needed to really start to identify a trend. What is your doctors view?

Edited by member 20 Apr 2023 at 18:43 | Reason: Not specified

User

Posted 20 Apr 2023 at 16:30

Sorry to read this Chris, I’m really not sure what to make of your PSA readings. Hope your medical staff can explain.

Best wishes to you.

Ido4

User

Posted 20 Apr 2023 at 16:45

My PSA was certain to increase from its nadir value at some point, and it is now over four years since I finished my RT, and I still have a prostate, so my rational mind is saying that this is nothing to be concerned about, but the emotional part still worries! We’ll see what the specialist cancer nurse has to say when I have my telephone consultation on 3rd May.

Edited by member 20 Apr 2023 at 17:45 | Reason: Not specified

User

Posted 20 Apr 2023 at 19:44

Hi Chris, If it was me I'd think it's a small rise. Was the previous reading the exception at 1.0. I had what looks like a rogue reading at a lower level. Slow is good anyway. There's nothing definitive with yours I'd think. Regards Peter

User

Posted 20 Apr 2023 at 19:59

Hi Cheshire Chris,

If I'm reading your historic PSA results correctly, you seem to have a pattern similar to "two steps forward, one step back". You have had some big drops in the earlier results and then a slight increase before it resumes its downward trajectory. The rate of decline has slowed, but overall, it still seems to be downwards (?). But I understand that any rise is unwelcome and a potential worry. The need for regular PSA testing is like a Big Wheel that we can't ever get off.

I hope the latest result is a blip.

Best wishes,

JedSee.

User

Posted 20 Apr 2023 at 22:36

I don't think you should be concerned - since you stopped HT, your PSA has gone higher than this and then come back down again. You only need to worry if it starts creeping towards 3.0

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

User

Posted 21 Apr 2023 at 00:10

Sounds like everything should be fine Chris from the other posts. I think it’s just normal to worry at every change though unless it’s downward 🤦🏻‍♀️ good luck with your appointment and hope you get the reassurance from it x

User

Posted 10 May 2023 at 20:00

I had my follow-up phone consultation a few days ago with the specialist cancer nurse from the Clatterbridge Cancer Centre, and she didn't seem at all concerned about the small rise in PSA. Said it was well within the range of random variations. So I'll try not to worry about it!

User

Posted 10 May 2023 at 20:14

Sounds about right and hopefully it’s given you reassurance for the interim.

I found it’s not the numbers that should really be the worry but the trending. Fingers crossed for the next set of bloods and that they reflect just usual fluctuations etc

My butt twitches like a rabbits nose every time I have a PSA. I think this is to be expected given what’s on the line.

User

Posted 22 Oct 2023 at 19:53

Hi Chris

Twitchy time indeed. Have my 4 year annual test next month. I always just ask for a copy of the blood report and reception are happy to print it out providing I take a letter formally requesting it. My GP is great but not that IT savvy hence I worked out getting it printed was path of least resistance. Plus gold standard as against an email saying it’s ‘normal’ 😵‍💫🤷🏼‍♂️🤪

hope all goes well with the results and please keep us posted.

Simon

User

Posted 22 Oct 2023 at 19:58

Hoping along side you Chris. Looking forward to a positive update my man.

Jamie.

User

Posted 22 Oct 2023 at 22:08

Keep positive Chris like you tell us to be the same your advice has helped many off us take some off your advice and stay calm .I am sure you will be fine gaz 👍

User

Posted 22 Oct 2023 at 22:11

When you say online Chris is that the NHS app? Rob has that and the results seem to come through really quickly. You’re right though Friday is not a good day for a test. My PSA anxiety definitely got better when we got the app.

Best of luck for your results Chris, hope you don’t see another rise.

User

Posted 23 Oct 2023 at 07:42

Hi Chris,

Yes the waiting is horrible, I’m always very tetchy during that week. We don’t have the results online in Scotland(don’t know why🤷🏼‍♂️), so it’s a visit to the surgery. It kind of annoys me when the receptionist says ,’Yes we have the results but the doctor needs to review them before I can tell you’. Then when you go back in, they say ‘Normal’ and you have to ASK for the actual figure. What’s that all about? Do they not know what we’re going through?

Anyway Chris I will keep my fingers crossed that your results will be good🤞

Derek

User

Posted 23 Oct 2023 at 18:10

Really pleased for you Chris, well done👏👏👏

User

Posted 23 Oct 2023 at 19:02

Really pleased for you Chris gaz 👍

User

Posted 23 Oct 2023 at 20:47

Cheshire Chris -that's great news. Hope you celebrated properly (not just tea, surely?!)

Best wishes,

JedSee.

User

Posted 23 Oct 2023 at 22:10

Brilliant news Chris 👍👍 really happy for you.

The system for results sounds good.

I’ve always had robs tests done through the GP (apart from some private in London just after op) so I don’t know if hospital test results would go on the NHS app also or not.

Hope you enjoyed your celebratory cup of tea 👍😂

User

Posted 23 Apr 2024 at 14:22

Fabulous news Chris.

User

Posted 23 Apr 2024 at 14:28

Fantastic news Chris. Long may it continue. Longer between check ups can only make you relax a bit more. I’m still on 4 weekly and it’s draining , I can only dream about a years gap … 🤔

Phil

User

Posted 23 Apr 2024 at 15:18

Chris, good to see.

Thanks Chris

User

Posted 23 Apr 2024 at 15:42

Fist pump right at you Chris. Great news.

👊

Jamie.

User

Posted 23 Apr 2024 at 22:32

Fabulous news Chris 👏👏

User

Posted 24 Apr 2024 at 07:06

Good news from another Chris from Cheshire 😀

User

Posted 24 Apr 2024 at 08:01

Brilliant news Chris, I can only hope I’m in your position in 5 years time.
I always love hearing the good news stories, it really does give us all hope.

Derek

User

Posted 24 Apr 2024 at 10:52

I love to read good news.
Leila

User

Posted 24 Apr 2024 at 13:49

Brilliant 👏

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

User

Posted 24 Apr 2024 at 16:38

That’s brilliant news to hear Chris, really happy for you.

Ange x

User

Posted 28 Apr 2024 at 17:27

Great news Chris. Very pleased for you.

Best wishes.

Ido4

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User

Posted 17 Aug 2018 at 05:01

Fingers, toes and eyes crossed for you too Chris.

I hope all goes according to plan.

State of the art sounds like a good place to be getting treatment.

Good luck and best wishes on your journey

****

We can't control the winds - but we can adjust our sails

User

Posted 17 Aug 2018 at 07:53

User

Posted 17 Aug 2018 at 08:01

I hope all goes well Chris.

Longer on ADT prior to radiotherapy is a good thing.

Ido4

User

Posted 17 Aug 2018 at 08:59

the staff and team at your hospital are fantastic and it sounds as if your plan is similar to the one my oh started on 8 years ago. There have been changes to meds along the way but still going strong so hope all goes well for you and that you have good family support too.

User

Posted 17 Aug 2018 at 09:35

Best of luck Chris your at about same stage as me I started bical tabs three days ago for three weeks next week having implant from GP then have to wait three months for brachytherapy & RT so our journey is very similar I'm under Christies in Manchester looks fantastic place and great reviews.

User

Posted 17 Aug 2018 at 10:02

Thanks for the good wishes, everyone - they're very much appreciated. I feel comfortable that I've made the right treatment choice, and I'm very happy to actually be on what will hopefully be a curative pathway now. I took my first bical tablet at 8 o'clock this morning, and I'm going to take the tamoxifen every Saturday to make it easy to remember.

How long does it typically take for side-effects to start showing up with bical? Presumably it takes a fair time for testosterone levels to fall after one starts taking it, so I guess I shouldn't expect anything for maybe a few weeks?

Chris

User

Posted 17 Aug 2018 at 13:52

Chris , with Bical symptoms aren’t so bad. It only slightly reduces testosterone rather than remove it like the injections do !! It’s key purpose is to DISGUISE the testosterone from the cancer so that the cancer can’t use it. Very effective but I don’t know for how long !! Sometimes it is added to castrate level injections to confuse the cancer even more. So you are still producing T and the symptoms aren’t so bad. Take care and good luck

User

Posted 17 Aug 2018 at 14:39

Thanks, Chris - that's very useful information!

Chris

User

Posted 18 Aug 2018 at 13:17

I've always been a keen walker, but I've done almost no exercise in the last month due to having first a template biopsy followed a week later by an operation to fix a large aneurysm in my splenic artery. I know it's important to keep fit during HT, though, so I'm going to get back to a regular exercise regime. Just come in from a brisk mile and a half walk which has left me covered in sweat (which is crazy - a month ago I could walk 5 miles and not notice it), but hopefully my fitness will improve again with daily exercise.

The slight fly in the ointment is an operation to remove half my left kidney which I'll be having shortly (my prostate scans revealed an early-stage localised kidney tumour, completely unrelated to the prostate cancer), so that'll probably leave me unable to do much at all for at least a month. I see the kidney surgeon on Tuesday, and hope to have a date for the operation soon after that.

So far, so good with the bical, but it's only been two days.

Chris

User

Posted 20 Aug 2018 at 19:10

I went to see my GP today to tell him what the oncologist had said and prescribed. My GP's been wonderful throughout this entire process - he literally saved my life by giving me a PSA test because that ended up with scans finding a symptomless kidney tumour which would without doubt have killed me in a few years had it not been found early.

Anyway, to return to the story, I was a little concerned about getting my bicalutamide and tamoxifen prescribed through my GP because I'd seen the oncologist privately, but there were no issues at all - he added them to my repeat prescription list without any questions. He's also said that they'll do my 3-monthly PSA tests, and just to call in when I need one.

I've read some real horror stories here about uncooperative GPs, so I count myself very fortunate to have one who's been so incredibly supportive for me.

I think I might be feeling the first effects of the bicalutamide today - I've been feeling "out of it" all day today. Not unwell, just a little "disconnected" from the world, if that makes any sense?

Chris

Edited by member 20 Aug 2018 at 19:12 | Reason: Not specified

User

Posted 20 Aug 2018 at 23:16

Hi Chris

I have similar-ish ratings and treatment options but am a bit ahead of you in the process (T4N0M0, treatment of HT then RT, started HT beginning July). I did Bicalutamide for a month and half-way through that had the first Prostap injection, now followed by a second 3-month worth injection.

On the feeling of disconnection: for me this is one of the major side-effects of the HT. Not totally sure if it is the hormone in itself or the anti-androgen (testosterone eradication) effect. Whatever it is, it does feel weird. Also,I registered for a clinical trial and the baseline visit threw up a heart issue so that added to the general fun and games. However, am seeing my GP tomorrow and emotions and other side-effects are things I want to understand better. Perhaps one just "lives with it", - at the moment talking about it when I am low helps me most.

Based on PSA scores, the HT is working for me: mid-May it was 141, mid July it was 43, last week it was 2. (Re the test frequency: I like knowing how things are / are not progressing and my cancer nurses will print off a testing slip for me so I can find out).

Not sure if this perspective helps but all the best to you with your treatments - speaking as a prop forward it's a whole new world for me ;-).

Good luck

User

Posted 21 Aug 2018 at 00:01

Macmillan do some good guides on the emotional impact of being diagnosed with cancer, and of finishing treatment

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions/cancer-and-your-feelings.html

Edited by member 21 Aug 2018 at 00:02 | Reason: to activate the hyperlink

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

User

Posted 21 Aug 2018 at 08:29

Bical did knock me out for a couple of weeks but then my body adapted ok. Mainly fatigue and sore boobs but no growth.

User

Posted 21 Aug 2018 at 10:03

I felt odd and a bit disconnected after taking bicalutamide. Hard to describe the feeling but I didn’t like it.

I guess it is the bicalutamide blocking our cells ability to use testosterone.

Ido4

User

Posted 21 Aug 2018 at 13:01

Yes, it's a weird feeling. Nothing I can't handle, though, and hopefully, as Chris says, my body will adapt to it in a few days.

Chris

User

Posted 21 Aug 2018 at 20:02

This is the final thing wrong with me, so I feel as though I'm well down the road to complete recovery now!

Chris

User

Posted 21 Aug 2018 at 21:18

I am pleased that things are moving ahead with your kidney treatment Chris and I have to say that I am full of admiration for the way that you have been handling all of this.

All the best with your treatments and I'll be rooting for you.

Kind regards

Kevan

User

Posted 21 Aug 2018 at 21:29

Cheers, Kevan. I was a complete emotional wreck for a couple of months after I was diagnosed, but my GP put me on an anti-anxiety medication called Sertraline which helped tremendously. Now I've completely come to terms with things and I'm enjoying life again - something I never thought would be possible again only a few weeks ago.

Sounds strange to say that I'm looking forward to major surgery, but I really am, because if this goes as planned it should be a complete cure for the kidney cancer, although I'll be having annual CT scans for the next 5 years to monitor things.

Chris

Edited by member 21 Aug 2018 at 21:55 | Reason: Not specified

User

Posted 21 Aug 2018 at 23:56

Glad that you have all the pieces of the plan in place now Chris - you have coped remarkably well, I think.

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

User

Posted 22 Aug 2018 at 15:29

Good Luck Chris. I hope the operation goes well.

For what it's worth I found the two weeks of Bicalutamide far harder to cope with than the Prostap that followed it. Fatigue was very noticeable but eased to the point where I was functioning quite well up to the Radio Therapy starting. Each person is different of course but Insomnia has been the only real pain for me. I still sleep the same number of hours but in one or two hour blocks. I am waiting for my second jab to wear off now and can only hope that my sleep improves when it does.

User

Posted 24 Aug 2018 at 15:34

Just had an email from my consultant to say that my kidney surgery will happen next Saturday, 1st September. I'm guessing it's a weekend admission because it's a private procedure, although being done in an NHS hospital.

Good to get a date for it!

Over a week on the bicalutamide now, and no side-effects. The weird "disconnected" feeling I had a few days ago has worn off, thankfully.

Chris

User

Posted 24 Aug 2018 at 16:09

I hope all goes well with the surgery on the 1st Chris.

Ido4

User

Posted 24 Aug 2018 at 17:13

Thanks - I'm looking forward to getting it over and done with. I'll probably be in hospital for two nights, so all being well it's likely I'll be home Monday. Assuming there's a good negative surgical margin on the tumour when it's removed, this should be a complete cure for the kidney cancer. My consultant said that if he's in any doubt about that, he'll remove my entire kidney.

Chris

User

Posted 27 Aug 2018 at 21:51

Chris

glad things are getting sorted now, you sound so much happier lately and I’m glad for you.

i had RT fraction 14 last Friday 24th. This three day weekend over the bank holiday has been very frustrating as all my meant to do is get on with the treatment and get it over with. I have four treatments this week which will take me to 18 and then just two in the beginning of September .

But I was disappointed to get an appointment to see my oncologists eight weeks later on the 8th of November for an update on my situation but apparently I must have eight weeks to get over the radiotherapy before they will give me a PSA test and treatment outcome

User

Posted 27 Aug 2018 at 22:29

Cheers, Alan. Yes, I am a lot happier. I’m enjoying life again, which is something that in all honesty I wondered if I’d ever do again not so long ago! Surgery on Saturday, a few weeks to recover, then hopefully back to work mid October or so. My employer’s been very good, and I can have up to a year off on full pay, but I’ve been on sick leave since the middle of May and I just want to get back to normal life again now. Obviously that’ll probably be disrupted again while I’m having (and getting over) my RT in the Spring, but I really feel that everything’s in hand now and that the end of treatment is in sight. My next real “landmark” with the prostate treatment will be a PSA test in November, when I’ll have been on the HT for three months. I’ve not had a PSA test since my initial diagnosis in May, so I’m keen to know how it’s changed.

Very best of luck with the final RT fractions, and please do let me know how things go.

All the best,

Chris

User

Posted 27 Aug 2018 at 23:09

Hi Chris

I am on the same plan as you HT then RT, I was very pleased to know that the bical tablets had worked in 4 weeks bring my PSA from 39 down to 23. I am waiting for my RT to start.

The last PSA I had was 1.75 so for me bical and then Prostap are working.

Take care

Phil

User

Posted 28 Aug 2018 at 08:47

Good luck with the op, hope it all goes well. x

regards barbara

User

Posted 28 Aug 2018 at 15:07

A year off sick on full pay? You must be a government employee or an MP! 😉

Best of luck with your operation.

User

Posted 28 Aug 2018 at 17:56

I've worked for a large multinational company for well over 20 years, so fortunately I've built up a very good benefits package over that time. My manager and everyone else at work couldn't have been more helpful and sympathetic, and they basically said "take as much time off as you need and get yourself sorted out". I do want to get back to work, though, particularly bearing in mind the fact I'll probably need more time off next year when I have my RT.

Chris

User

Posted 28 Aug 2018 at 21:01

Chris

The best advice I can give you is to try and keep yourself fit from now up to when you start your radiotherapy

Daily walks would be a good start, keeping the distance and effort well within yourself, but if you’re not sure get advice from your GP before starting any exercise routine.

cycling is also good exercise and no stress to the joints.

Today after fraction 15 I was feeling a bit down, in spite of having just 5 more to go. Yet after 45 minutes cycling the endorphins took effect and I got home in a happier state of mind and relaxed.

User

Posted 31 Aug 2018 at 11:23

I have the partial nephrectomy operation tomorrow to remove my kidney tumour. Looking forward to getting it sorted out, but obviously very apprehensive about the actual operation (or rather, the recovery from it). I guess it's natural to be nervous about major surgery! Still, I know it needs doing so it's just a matter of getting through it.

Chris

User

Posted 31 Aug 2018 at 11:42

Good luck on a full recovery friend

User

Posted 31 Aug 2018 at 11:45

Thanks, Chris. Much appreciated.

Chris

User

Posted 31 Aug 2018 at 14:31

I will be thinking about you tomorrow

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

User

Posted 31 Aug 2018 at 16:08

Thanks, Lyn, that's very kind. I have to be there at 11am, and they're operating at 1pm, so there shouldn't be too much waiting around at least.

Chris

User

Posted 31 Aug 2018 at 16:14

HI Chris

All the best for tomorrow and I wish you a speedy recovery.

You are a real inspiration.

Kind regards

Kevan

User

Posted 31 Aug 2018 at 16:48

All the best for tomorrow and the outcome Chris

Cheers Bill

User

Posted 31 Aug 2018 at 22:46

Hi Chris

good luck for tomorrow mate.

I had fractio 18 and final review today, 2 to go next week.

please ask me for any advice once you get to RT

User

Posted 31 Aug 2018 at 22:52

All the best Chris - hope all goes well.

User

Posted 02 Sep 2018 at 08:29

Chris

User

Posted 02 Sep 2018 at 13:37

Well, that's interesting. Apparently the reason the surgeon was unable to remove the tumour from the kidney is that I have weird anatomy. He said I've got a second major artery going to my kidney that shouldn't be there, and which he's never seen or heard of before! So I might end up in a medical journal .

Feeling considerably better now. Managing to walk (very, very slowly!) around the ward which I certainly couldn't have done yesterday. Morphine is wonderful stuff!

Chris

Edited by member 02 Sep 2018 at 13:38 | Reason: Not specified

User

Posted 02 Sep 2018 at 14:47

Great news Chris and thanks for the update

User

Posted 02 Sep 2018 at 17:05

Great to have that over and done with Chris. Hope your recovery is smooth.

Ian

Ido4

User

Posted 02 Sep 2018 at 19:04

I'm in a lot of pain which medication isn't being wholly effective in suppressing. Think I might be here awhile. I don't see any chance of getting home tomorrow as the consultant was originally suggesting.

Chris

User

Posted 02 Sep 2018 at 20:30

You’ve been through such a rough time since joining us on here Chris, PCa, aneurism, Kidney tumour. I don’t know how I would have coped even with the support of my OH and your beating it on your own.

Top effort mate and respect to you

User

Posted 02 Sep 2018 at 21:04

Best wishes Chris. Hope the pain eases. No need for it really. Sometimes hospitals at the weekend are a nightmare. No one savvy enough to prescribe properly.

User

Posted 02 Sep 2018 at 21:52

There is bound to be some pain - painkillers can't completely numb you otherwise you might overdo things. But make sure it is being topped up regularly to minimise the amount of breakthrough pain.

Fingers crossed tomorrow is easier.

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

User

Posted 02 Sep 2018 at 22:14

I hope you have a good recovery and will feel better soon. Don't rush things - you will need to take things slowly to allow yourself to heal. Interesting you have a novel anatomy - must have given the surgeon a surprise!!

User

Posted 03 Sep 2018 at 14:03

Still, I'm on the road back to recovery now, and no more kidney tumour!

Chris

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