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Hooray I'm off zoladex, let's hope for good.

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User

Posted 04 Dec 2021 at 00:01

Brilliant news Dave 👍🏽 Well done on your latest psa result. Long may it continue

User

Posted 04 Dec 2021 at 08:44

Brilliant news. You are same treatment as me, but 6 months ahead, so I always follow you closely.

User

Posted 04 Dec 2021 at 12:58

Thank you everyone.😺

Dave

User

Posted 15 Dec 2021 at 08:20

Just to let people know my testosterone is 16.2, so it has stabilised at about middle of the range for an adult male.

It took at least 8 months post zoladex to recover but then it recovered fast.

Dave

User

Posted 15 Dec 2021 at 16:23

Great news...I'm very envious!

Vince

User

Posted 15 Dec 2021 at 20:27

Good to know this Dave. Thank you.

User

Posted 18 Dec 2021 at 16:31

I have just come off Zoladex after 2 years ,my PSA has been rising from 0.4 to 0.8 in a year .I only had a few side affects from it except Fatigue witch has really knocked me about,i cant walk very far and my knees buckle ,I'm seeing a physio to see if that helps.The zoladex had stopped working and due to the Fatigue the onco has taken me off it.He will monitor my PSA and see how it goes before deciding on what action to take next.

I came off Zoladex on 11/10/21i don't know how long it will be before the fatigue wears off and i can walk again.

Richard

User

Posted 20 Dec 2021 at 02:22

Hi Rikki,

That level of fatigue is bad. I see you had RT and still have a prostate so hopefully PSA will settle down around 2.0.

Dave

User

Posted 20 Dec 2021 at 11:28

Hi Rikky, we had a member a few years ago who ended up in a wheelchair, the fatigue was so complete. After talking to the PCUK nurses he took up swimming and found that this really helped - he did regain his ability to walk. Since then, the PCUK nurses have run fatigue programmes - definitely worth you giving them a call. Number is at the top of this website page.

Edited by member 20 Dec 2021 at 14:42 | Reason: typo

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

User

Posted 17 Jun 2022 at 00:20

I have had some six monthly blood tests I had these done about a month earlier than I originally planned, and had more thorough tests than I would normally have, for reasons you will see later. Anyway, I'm pleased with the results. PSA 0.2 So having been off HT for two years, the three PSA tests which have not been influenced by HT and all six months apart are 0.2, 0.1, 0.2 When you consider anything less than 2.1 will be considered OK I am very happy with these results.

I should also mention that nearly all other blood results were normal, the exception being Serum Ferritin but this is something I am aware of and does not cause a problem. Liver function test was also normal, personally I consider this to be a failure to overindulge, I will try harder to get an abnormal result next time.

Of more concern and your experiences on this would be useful. About a week ago I had a piss before bed and looked down and noticed blood at the tip of my penis, not a lot, perhaps half a thimble full. I washed the penis, looked for any external injury of which there were none (and lets face it if you catch it in your fly, you know). So this had definitely came out the urethra . The next morning a slight pink tinge to urine at start of peeing then normal straw colour. I spoke to the locum GP the next day, he arranged a urine test and blood tests. Hence all the details about blood results quoted above.

Urine sample showed no blood so very unlikely to be from kidneys or bladder. If I had not had PCa I would have ignored this and waited to see if it recurred (that is what us men do, and the reason genuine problems go untreated). As I have had PCa and the Christie Hospital said monitor yourself and just let us know if there is a problem, I thought better not to ignore it. The locum GP was originally of the lets wait and see opinion, but then phoned back and said, "I've looked at your notes, I'm doing a 2 week cancer referral". So I have an appointment on Monday. If the PSA had gone up I would be worried, but it hasn't so I'm not.

Has anyone got an opinions; should I be taking this more seriously? This is being investigated by the local hospital, should I get the Christie involved?

I will keep you informed after Monday's Urology consultation, but if anyone has advice or experiences it may help me ask the right questions.

Dave

User

Posted 17 Jun 2022 at 06:48

Dave, you are certainly at the right hospital. I opted to go out of area to see a prof at the Christie. Within a couple of weeks I was diagnosed with severe radiation cystitis.

My symptoms started with blood in the urine a few weeks after salvage RT. It soon progressed to passing lots of large blood clots and some strange looking tissue formations. I should point out the my condition only happens to around 5 percent of RT patients, which is probably why my home hospital didn't know what it was.

I had had numerous incursions into the bladder for the stricture and like you was doing intermittent catheterization.

A quick visit into theatre and the prof knew straight away what it was , a cystoscopy would have done the job but the stricture problem meant a theatre visit was required.

Hope it turns out to be something simple for you.

Thanks Chris

User

Posted 17 Jun 2022 at 07:35

Nothing more you can do, probably just a crusty bit of irradiated tissue broken off.

Now stop worrying and get to work on those liver function results until Monday!

User

Posted 17 Jun 2022 at 08:16

Really glad that PSA levels are so low and everything else is pretty much normal. Made me chuckle about making sure you get an abnormal result for liver next time lol!!

After a few sessions of RT, my dad got a bit of blood in pee. I remember Macmillan saying this could be caused by RT as it irritates the lining or something like that. She said it could happen during treatment or months/years afterwards.

May even be an infection.. UTI.

Really glad its being checked out. Please do keep us posted after Monday.

Not going to say don't worry, as i know you have a brilliant attitude to these things.. something i am still learning from you!

User

Posted 17 Jun 2022 at 09:55

I think this is similar to rectal bleeding, something that can happen anytime after radiotherapy, but does have to be checked that it's not something more serious.

If it had been in the bladder or further back in the upper urinary tract, all your urine would probably be the same colour (although as blood settles, that's not always the case). So it sounds like bleeding in prostate or urethra, which is not completely unexpected after radiotherapy.

As for overindulging, I believe that initially impacts Gamma-GT levels, which are not routinely included in liver function tests (at least not by my GP or hospital). My GP did add it once when some other liver enzyme went way off, and he told be afterwards it was just to confirm I was a non-drinker, as sometimes people with a drinking problem will claim to be a non-drinker. The liver issue turned out to be due to Tamoxifen in my case, and went away by reducing dose.

User

Posted 17 Jun 2022 at 14:22

Good stuff Dave onwards you go things are looking good have a good summer gaz 🔥👍

User

Posted 17 Jun 2022 at 16:49

Hi Dave, Great news that you're happy with your psa. Good words about not ignoring symptoms as well. Half a thimble isn't that small but if it didn't happen again then I think I'd be holding back, although I think you made a wise choice. All the best Peter

Edited by member 17 Jun 2022 at 16:58 | Reason: Not specified

User

Posted 18 Jun 2022 at 12:18

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).

Dave

User

Posted 20 Jun 2022 at 16:22

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.

Dave

User

Posted 20 Jun 2022 at 20:58

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.

User

Posted 20 Jun 2022 at 21:46

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.

Dave

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