Thanks all, for the replies, opinions and advice. We shall await Monday.
the following is nothing about PCa but just to tell you about the high serum ferritin (SF). About 20 years ago my uncle was diagnosed with hemochromatosis. He is Irish; it's genetic. So when I visited the doctor in 2007 I asked to be checked. I have one copy of the defective genes and SF was 450 normal range is 30–300, so a bit high. For people with hemochromatosis the figure goes to the 1000s and iron overload damages organs.
As mine was high I was referred to hospital, and over the next five years every three months I had a test and sometimes a pint of blood removed. It was an inconvenience to life. The SF was managed at just under 300.
The consultant changed and after that I didn't get another appointment letter. I decided not to chase things up.
In 2021 whilst having a PSA test I said can we check SF it came back at 520. GP and I talked, I said that after nine years of ignoring this problem it has not got a lot worse and saved me 36 trips to hospital. He said he would write to consultant and seek advice. That was six months ago and no reply from consultant.
Anyway this time SF result was 351, only slightly above normal. I have no doubt next time it may be higher, but I think my natural level is mid 400s. That is not high enough to cause organ damage. So for me this is a disease not worth treating.
I don't think there is any lesson to be learnt from this. Ignoring symptoms can lead to an early death as happens so often with PCa, but some diseases don't need treatment as for my hemochromatosis. Once you are on the treatment treadmill it is hard to get off.
If there is anything to be learnt, it is that you do have choices. It is not wise to go against medical advice but only you know how inconvenient 3 month trips to a hospital are for you, and only you know how much of a risk you will take with a disease (as long as that risk choice is an informed choice).
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Well I've seen the urologist today. GP had said they may do a cystoscopy, but appointment letter said nothing about that and I was rather hoping this was going to end up being a little chat and you're on your way.
No, I was asked a few questions, informed of the side effects and asked to consent to a cystoscopy.
Bladder looks good. I could see the screen and he pointed out a red area and said that is inflammation from radiotherapy. He is going to organise a CT scan to check my kidneys but as all my blood tests were good and the appearance of the blood sugested it was urethra or prostate as the source of blood, I would be surprised if this showed anything.
At the moment I still feel like I am pissing razor blades, but I guess it is good to have confirmation nothing has started going wrong in the bladder.
Slightly more worrying is the fact that the urology department should have been doing follow up meetings for the last four years. Also the follow ups for hemochromatosis randomly stopped and the last referral letter from GP has been ignored. I should point out this is my local NHS hospital. The Cancer hospital (Christie) have been exemplary: the local NHSFT (Tameside GH) not so good.
Anyway urology have said they are going to start doing follow up appointments now, just as The Christie are winding them down.
Maybe Tameside GH just wanted me off their books in case I died and it would look bad on the statistics, and now I've survived nearly five years they want to claim the browny points.
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Hi Dave,
Could it be UTI? Usually that feels like pissing razor blades.
My dad hasn't had any follow ups from Urology. Should he be having them?
Glad all looked ok with the internal check. Also glad they are doing further checks!
Im sure it will clear up, whatever it is. Thank you for the update. I was thinking of you this morning.
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The pissing razor blades is the result of them shoving a camera up a hole which wasn't designed to have cameras shoved up it. They make the excuse that the hole may not be designed for a camera, but we have a camera designed for the hole. I recon it was designed for bigger holes than a penis.
The pissing is getting better and will only last a day, the same happens after a catheter has been in a week and then removed.
I'm really not worried about this (no surprise there) yes, pissing blood is bad, but it looks like it was a one off. It almost certainly was from the lower urinary tract not the upper one. The fact the PSA has not changed means it is very unlikely to have recurred.
Bladder cancer is a rare side effect of RT, so I guess I'm glad that is ruled out.
When I saw that I could see the TV monitor. I commented that it would be interesting, the nurse said she would love to see in her bladder, she'd seen plenty of other people's. I thought that it would be like a ladies hair dressers between other clients they are always restyling each others hair. Surely they would be shoving that camera everywhere once the patients had gone home.
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When I had my cystoscopy it was a 10 minute deal. My Uro explained he was late for a meeting. Little gel , no 15 minute wait. Just wielded this huge camera and stuck it up me. Iβm good with pain but my wife heard me in the waiting room !! I actually felt violated afterwards and sheβd a few tears with the nurse. I think I broke her hand squeezing it hurt so much. Never again
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On the subject of urology follow ups. I don't know.
The Christie oncologist always asked if the urologists had seen me. I said no, quietly thinking, why would they? I'm under an oncologist now.
Today the urologist said, I can't find any notes about your cancer follow ups from urology. I said I've not had any from urology, but have had them from oncology at the Christie. He said, "oh well I'm going to book you in for a four month urology follow up."
It makes no sense to me. I guess if other members who had RT and have not had a prostatectomy could comment on which departments did follow up with them it would be interesting.
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Hi Chris, same speed with me. 10 mins turn around. I'd not heard of a 15 minute wait. Is that how long it takes for the anaesthetic to work, if so they didn't wait long enough on me.
Half an hour afterwards I felt a bit sick and was sweating like I had a fever. I had a fruit drink in the canteen and after an hour felt well enough to get on the motorbike and ride home.
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In the old days, a lot of members here who opted for RT/HT stayed under the care of both the urologist & oncologist afterwards, perhaps seeing each one every 12 months so being reviewed 6 monthly; onco monitoring the impact of the RT / HT and uro monitoring the plumbing. It doesn't seem to be happening recently so perhaps cost-cutting or the recent increase in uro-oncologists?
John has remained under the care of both following RP & then salvage RT/HT but he doesn't bother making appointments with either of them nowadays - just sends them both the PSA result. If the PSA goes above 0.15, we will make an appointment with the onco.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I'm under oncology, having been treated with radiotherapy.
However, I've always made it clear I've been concerned about sexual function, and I've had follow-ups with urology for that, but I suspect that wouldn't have happened if I hadn't pushed. Also followed-up by colorectal for the rectal bleeding.
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Dad is under oncology, after having HT/RT. Next follow up is September so i shall ask if Uro follow up needs to be made, although they should be telling us this, not the other way round.
Dave.. shoving cameras everywhere.. really made me laugh out loud!
Hope you are better today!
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Thanks for your views on whether you are having uro or onco follow up. I can't see much point in me starting uro follow up after four years. I will see how it goes.
Pissing is a lot better today, hardly notice that I had the camera yesterday.
Just had a phone call I have a CT scan on Saturday. I guess it will be nice to see if everything is clear.
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Best of luck with the scans Dave, and hope all is ok x
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Saturday hey. My dad had an MRI on his ankle on a Saturday which i thought was unusual, as i didn't think they did weekend appointments. I know you will anyway but do please update on here with results. All will be clear.
Glad pissing is better today.
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good luck with the scan's Dave glad the pissing has improved π¦
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I called Macmillan today to ask about Uro follow ups. She said Uro do all the investigation work at first, if cancer is found and Chemo/RT and HT are taken up then oncology take over. If an operation is done then uro and oncology both follow up. If no operation then only oncology follow up. If any uro concerns come up that is not cancer related then oncology will refer to Uro again.
So for dad its just oncology for now. Macmillan are fab!
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What happened with scan Dave? Results in?
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Ah just seen on your profile update nothing to worry about. Fab news!
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Hi SR12, I have officially had the cystoscopy result, but haven't officially had the CT scan result.
The CT scan was to check kidneys and as the blood was not well mixed with the urine, it was almost certainly from after the bladder rather than before or in the bladder. So the chance I have kidney problems is very small. Since the scan the oncologist has sent an appointment for October so I am assuming nothing worth seeing on the CT scan or I would have been called in straight away. I guess there is a chance, I might get called in for an urgent appointment, but I think that is vanishingly small. I will post if that happens.
I will be interested to see the kidney report at some time, it may popup in correspondence between hospital and GP, or I could ask in October, if it comes back perfect I shall increase my alcohol consumption.
Edited by member 05 Jul 2022 at 00:25
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Sounds good! Your interpretation of these facts seem to make sense. Glad to hear. Congrats on this subject and congrats on your positive and smart attitude.
Best,
Lola.
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Great news. Doesn't sound worrying. If it was then i am sure you would have had a call by now. Its good to hear that you were fully checked out without delay. Definitely admire your positive attitude.
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Nice one Dave. Thereβs something to be said for the alcohol. I actually think itβs preserving me internally ππ
Keep on trucking π
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Great to read this news Dave π
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Preserved or pickled?
Dave - I am glad to see good news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just in case anyone is interested the CT scan results on the kidneys have came back after a month. "Very small stone, right kidney, everything else absolutely normal".
This was all prompted by a bit of blood after peeing. I'm not due a PSA test until Christmas, so I will ask for calcium and uric acid to be added to the blood tests then. I might eat a cranberry muffin instead of a chocolate muffin as a token gesture towards kidney health, but that is as far as I'm prepared to go when it comes to diet fads. Other than that I shall just carry on as per normal.
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That's a big relief, Dave. Thanks for sharing.
Enjoy your cranberry or whatever muffin you feel likeπ
Best wishes,
Lola.
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Good news Dave. Shame Canberries taste like sh1t lol.
You need to drink loads of fluids mate to keep the Kidneys flushed through. Beer is my weapon of choice , and after all itβs 90% water yeh π
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Good to hear. Hopefully it won't cause any issues.
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Great news Dave, Tend to agree with Chris that cranberries arent all that. but when it comes to kidney health token gestures? Theyre a must! Love youre humour on here mate, So refreshing.;)
Jamie
Edited by member 03 Aug 2022 at 21:18
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Great news Dave! Enjoy the muffin! :)
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Good news Dave have a couple of pints to wash it through π
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In October I had a phone appointment with the urologist. Nothing very interesting in that, so I decided to await my PSA test results before posting an update.
The most notable thing about the urologists chat was that having failed to identify me as a patient for the last four years he asked about the oncology follow ups. I told him they are now yearly, next one January. He said "well we like to interleave ours with theirs, so we will say July". I thought it was a bit of a cheek implying it is a coordinated plan, when they didn't know I existed for four years. Having had my little rant, there is nothing much for urology to do: oncology has been doing everything right.
On Friday 9th I had my blood tests, in readiness for the January meeting. Latest PSA has just came up on my phone as 0.1, which is very good, as I still have a prostate. I don't know if the actual result is <0.1 as the app doesn't know about the < symbol.
So my post HT results every six months have been (No. 1) 0.1, (No.2) 0.2, (No.3) 0.1, (No.4) 0.2 and latest (No. 5)0.1. I'm very happy with that. Immediately post treatment one doesn't know if psa will just be a steady upward path hopefully leveling out, or perhaps just continuing up, which would not be good. So I was happy with result number 3, suggesting it has leveled out between 0.1 and 0.2. Result number 4 was still in the briefly established range. Result number 5 means I have now had two years post treatment with no sign of increase. I know this is still early days, but I'm feeling more confident that I'll die of something more fun than prostate cancer.
Good luck to everyone, I'm aware not everyone is in as good a place as me, and aware that luck can turn at any moment.
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Nice one Dave. All looking pretty steady and even if not gone itβs well fast asleep. The worry never goes even for those cured and sadly we all suffer side effects wise for the rest of lives, not mental and physical. Most days Iβm up and on it. Itβs been so long now 7 1/2 yrs itβs easy to forget mostly , but now Iβm 2 yrs into lifetime HT I realise the end canβt be that far round the corner. Just try to stay busy I do and make the most of each day month year.
Good luck and best wishes
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It’s so good to read this. Pleased for you.
Leila
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Amazing news Dave. So pleased to read this and also good learning for me re PSA up/down. Dads is due in March so hoping for similar. Yes, it can change at anytime, but so can anything. That is life. Just love your positivity!
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Being confident of dying of something more fun is probably the best attitude you could find on these pages!
Love it Dave.
Jamie
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Amazing news Dave ππ hope I follow the same path ππ so pleased for you and the family ππ
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Brilliant news Dave, great everything is going so well x
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Hi Dave, When you're happy that is the main thing. All the best Peter
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Well it's six months since my last post on this thread and that means another PSA result <0.1 . For anyone new here, I was diagnosed March 2018, I had HDR brachy, RT in August 2018. I was on HT for two years until April 2020.
All PSA results prior to December 2020 were whilst under HT; the results were good, but I only consider the results post Dec 2020 to give any reliable idea of my prostates status. Those results have all been 0.2 or 0.1 with the majority being 0.1, as any result under 2.1 would be considered a success I am very happy with these consistently low results.
Supposedly I have an appointment with the urologist soon, they accidentally spotted a small kidney stone last year, and seem to want to follow up on this, but then they cancel appointments. I have no interest in chasing this up, so I will go with the flow, and discharge myself if the hospital appointments become more troublesome than the disease.
Edited by member 30 Jun 2023 at 01:46
| Reason: Just noticed it's a less than. So lower than any recent result.
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Great stuff Dave. Love your shoulder shrug attitude. Its exactly whats required. Good man.
Jamie.
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So pleased for you Dave, I can’t wait for the day when I finish Prostap!
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Dave , great news on the PSA. I had a kidney stone, which caused a bit of discomfort until I passed it. Hope all continues to go well.
Thanks Chris
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Great news Dave long may it continue gaz π