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 👍👍
If life gives you lemons , then make lemonade |
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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
If life gives you lemons , then make lemonade |
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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
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All the best for tomorrow and the outcome Chris
Cheers Bill
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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
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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
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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
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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
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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
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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
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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
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Thanks, DR. Everything's fine again now I'm taking the Tamsulosin again. Had a much better night last night.
Cheers,
Chris
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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
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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
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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.
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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.
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Originally Posted by: Online Community MemberNice 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
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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
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I've certainly been relatively untroubled by side-effects, Chris. Even this latest issue is not that big a deal.
Best wishes,
Chris
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Nice one. The future is looking brighter for you now.
Ray
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I remember our first chat on the phone Chris, i'm overjoyed to hear your news my friend, long may it continue
Alan
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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
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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.
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Fingers crossed for you Chris, you deserve some better luck
🤞
Cheers
Bill
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If life gives you lemons , then make lemonade |
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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
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Fingers crossed for you hope for positive results. xx
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Hope you get good news Chris.
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Hope all goes well Chris.
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All the best Chris from a fellow Clatterbridger!
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Great news Chris, so pleased for you.
Good luck with your next PSA result.
Ange
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Congratulations Chris really good news!
cheers me up on my birthday
Alan
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Lovely news - happy Easter!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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.
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PSA test anxiety never goes away for me.
Here’s hoping for a good result.
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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
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Pretty good result to me.
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If life gives you lemons , then make lemonade |
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Great news Chris. Hope you can enjoy the festive season as much as possible given Covid. 🍻
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Love it. Xmas blow-out mate
If life gives you lemons , then make lemonade |
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Hope everything goes well. Defo correct about the anxiety as it keeps one frosty that’s for sure 👀
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Best wishes Chris. God bless the NHS heh in these trying times. Best of luck on your results 🤞
If life gives you lemons , then make lemonade |
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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
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I hope all is clear in the scan Chris. The “has it come back” worry never goes unfortunately. Take care,
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Good luck Chris , hope all goes well 👍
Phil
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Great news Chris 👍 Long may it continue.
Phil
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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.
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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good news Chris
regards barbara
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That’s a great result Chris 👍
Phil
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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
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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
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That is reassuring Chris.
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Well done chris, hope there is chocolate on those digestives :)
Cheers,
Nick
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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
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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Chris thanks for all your advice
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Nice Chris. Good result and many more !
If life gives you lemons , then make lemonade |
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Good news Chris. All the best.
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I thought it was about time I added a profile picture 😁.
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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 :-))
If life gives you lemons , then make lemonade |
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good luck to you as well Chris 👍
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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
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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 😀
If life gives you lemons , then make lemonade |
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Best of luck to both of you on your scan results 👍🏽
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good luck with your scan results Chris.
barbara x
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Good luck to both of you two Chris’.
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Thanks, everyone, and best wishes to you, Chris J!
Chris
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Great news from one Cheshire Chris to another 😆
If life gives you lemons , then make lemonade |
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Great news Chris x
regards barbara
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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
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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
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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
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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
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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 👍
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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
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Hope the treatment works 100% - wishing you a speedy recovery
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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 |
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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
If life gives you lemons , then make lemonade |
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I hope all goes well Chris.
Longer on ADT prior to radiotherapy is a good thing.
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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.
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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.
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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
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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
If life gives you lemons , then make lemonade |
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Thanks, Chris - that's very useful information!
Chris
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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
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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
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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
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Bical did knock me out for a couple of weeks but then my body adapted ok. Mainly fatigue and sore boobs but no growth.
If life gives you lemons , then make lemonade |
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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.
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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
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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
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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
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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
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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
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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.
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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
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I hope all goes well with the surgery on the 1st Chris.
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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
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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
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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
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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
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Good luck with the op, hope it all goes well. x
regards barbara
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A year off sick on full pay? You must be a government employee or an MP! 😉
Best of luck with your operation.
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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
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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.
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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
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Good luck on a full recovery friend
If life gives you lemons , then make lemonade |
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Thanks, Chris. Much appreciated.
Chris
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I will be thinking about you tomorrow
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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HI Chris
All the best for tomorrow and I wish you a speedy recovery.
You are a real inspiration.
Kind regards
Kevan
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All the best for tomorrow and the outcome Chris
Cheers Bill
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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
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All the best Chris - hope all goes well.
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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
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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
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Great news Chris and thanks for the update
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Great to have that over and done with Chris. Hope your recovery is smooth.
Ian
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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
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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
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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.
If life gives you lemons , then make lemonade |
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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
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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!!
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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