My husbands recent diagnosis of advanced prostate cancer

User

Posted 07 Jan 2022 at 17:14

I intend to keep drinking 3 litres of water a day for the foreseeable future and actually started doing so at the time (last June) that I was officially diagnosed with prostate cancer. It does not have to be just water, but can include low-fat milk and unsweetened drinks. Most people do not drink enough fluids, which are needed to flush the toxins out of the system.

Ivan

User

Posted 09 Jan 2022 at 00:17

Hi Ivan,

Yes I’ve told him he has to keep drinking lots, I’d rather him have an accident than an infection. He will definitely get started back on PFE’s when catheter out and hopefully recovery will be good. Will keep you posted. Hope you are continuing in the right direction 👍🏽

User

Posted 09 Jan 2022 at 00:23

Originally Posted by: Online Community Member

My work involved stopping in hotels a couple of nights a week. I was paranoid about wetting the bed. I put a pad in my snug pants, wore a pair of tena pants over the top had one of the hospital type water proof squares on the bed and also slept on a towel. As it turned out I never leaked.

I assume you can still book trains seats to be near a toilet. Don't forget some nappy sacks for the wet pads]

This is all really great advice Chris thank you. Will definitely do all of this as I was worried about the hotel bed 🤦🏻‍♀️ I took everything to London with me in preparation as it thought catheter would be coming out…but with us getting the train this time I will be restricted with how much luggage! I got him loads of pads and pants and also puppy pads which someone else advised so will take them with us.

I did request a seat near toilets, but I always request him a forward facing seat which he never gets so won’t hold my breath ha!

User

Posted 09 Jan 2022 at 00:25

I can’t seem to get the hang of posting on this site still 🤦🏻‍♀️ figured out the ‘quote’ but still hasn’t posted as I wanted 🙄😂

User

Posted 09 Jan 2022 at 00:36

You click on quote and then when the section appears in the text box, you move your cursor to the line below the final "quote" wording so that your own words show after the italics.

I.e., when quoting Chris, his last word was 'pads' snd in your text box, there would have appeared some brackets and quote after the word 'pads'. You needed to start typing after that.

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

User

Posted 09 Jan 2022 at 00:57

Originally Posted by: Online Community Member

You click on quote and then when the section appears in the text box, you move your cursor to the line below the final "quote" wording so that your own words show after the italics.

Thanks so much Lyn. Just testing it out and seeing if its worked this time 🤦🏻‍♀️😂

User

Posted 20 Jan 2022 at 13:42

TWOC finally completed yesterday and although took a while….successful 👍🏽
Stayed in a hotel last night and now just on the train home.
Early days of course but the night went well. We were brave enough to go out for food last night and he was fine. He’s getting the urge to go for a wee which I think is positive and he seems to be making it before dribbling. Flow wasn’t great yesterday, I bought the bottle that someone suggested last week and he’s found it better weeing into that first (it’s also helping us keep an idea of quantity). He got up a couple of times in the night to wee and flow seemed stronger. We were fully prepared with pants, pads and puppy pads on the bed but all dry this morning. He is getting some leakage when moving about, coughing etc but if we stay on a similar path we will be delighted. (Not getting complacent though) All in all feeling really good, really positive about the future and ready to get on with our life’s. What a different story to 6 months ago.

Thanks so much to everyone on here for all of your help over these months…not sure we would have got through it all quite as well without all of the support and advice xx

User

Posted 20 Jan 2022 at 13:48

Great , Elaine, that everything has gone well and that your OH is mostly continent. Leakage when moving around and when coughing etc is to be expected and should improve over time. Still need to do pelvic floor muscle exercises and drink a good amount of water each day.

Ivan

User

Posted 20 Jan 2022 at 15:03

Great news Elaine onwards and upwards 👍

User

Posted 20 Jan 2022 at 15:54

Thank you Ivan & Gaz.

They said not to start pelvic floors again straight away, not sure if that’s because of 4 weeks with the catheter in 🤷🏻‍♀️will start again from next week though 👍🏽

User

Posted 20 Jan 2022 at 16:50

Elaine,

Pleased all went well, another hurdle out of the way. Take it easy, no marathons just yet.

Thanks Chris

User

Posted 20 Jan 2022 at 17:19

Thanks Chris. And no definitely no marathons yet…or ever as far as he will be concerned 🤣

User

Posted 22 Jan 2022 at 16:21

Below was posted by Lyn on a different thread, replying to a question I asked with regards to lymph node spread. I have copied it onto my thread so I will always be able to find it.

Posted 22 Jan 2022 at 14:49

I think it is because we imagine the cancer growing inside the prostate and then bursting out of the covering to then climb across to a lymph node or a bone. It doesn't work like that.

The cancer can burst out of the gland and invade other things close by, such as the bladder, bowel or pelvic muscles. Or it can stay in the prostate and look quite small but blood and lymphatic fluid both travel through the prostate and it is possible for the flowing liquid to pick up cancer cells and then carry them away. If the lymphatic fluid picks up some cancer cells, these will usually be collected in the nearest lymph nodes (which act like a sieve, I suppose) - this may be what has happened in your case. Or the nearest lymph nodes can't collect it all and the cancer cells are then travelling all around the body - this is N1 in a diagnostic report and the genie is out of the bottle, the whole lymphatic system cannot be treated curatively. Or the lymph nodes do their job well but the blood carries cancer cells around the body, including to the bone marrow where cells settle and then metastasise. Again, the genie is out of the bottle and generally speaking, although one or two bone mets can be zapped, there is a high chance that the cancer cells are already settled in bone marrow elsewhere around the body.

What is interesting is that for most men with PCa, the prostate cancer cells travel around the blood or lymphatic system but are never able to take hold / metastasise. I think PCUK was funding some research at one point to try to identify why some bodies can clean up the travelling cells and some can't.

I don't suppose there is any way for you or the surgeon to know whether those cells had all been caught in the sieve of the nearest lymph node (in which case, he should have a lovely undetectable PSA for the rest of his life) or whether the cancer was already settling in other nodes around his body. It is a waiting game and, if you are lucky, it will be a very long wait - my dad had his recurrence 13 years post-op although obviously those tiny micromets had been sitting there all that time.

User

Posted 22 Jan 2022 at 18:50

No problem - just keep in mind that this was a simplistic or visual explanation - in reality, lymphocytes are produced in the bone marrow and then carried to the lymphatic system ready for action so cancer cells could be moving in and out of marrow. It's a bit like the central heating system isn't it - water goes through the boiler and is then sent to the taps - if you want hot water, it is diverted through the heating element on the way. The radiators are heated from the same boiler - goes through the same heating element and then flows off around the house. The radiators are supposed to collect all the sludge at the bottom and you hope it never gets into the boiler.

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

User

Posted 23 Jan 2022 at 14:00

I think because we were initially told his PCa was incurable and surgery wasn’t an option, to now having had surgery and with a slight possibility he might not need further treatment, I was just struggling to get my head around it all (obviously amazing news for us). Three pages of histology sends your mind into overdrive too trying to unravel it all and usually failing ha! I suppose I feel like we’re now in a similar position to most with this disease, that we just have to assume all ok until a PSA test tells us otherwise. It just helps to hear things in a more simplistic way so really appreciate it x

User

Posted 16 Feb 2022 at 17:45

Well back to London this week. Bloods yesterday and just had appointment with consultant. First post op PSA <0.03 very happy with that. Will still have HT in his system so I guess this PSA was to be expected but I still started to worry a bit as it got closer! Relaxing for 3 months now until the next one 🤦🏻‍♀️ X

User

Posted 16 Feb 2022 at 17:58

Great news Elaine

Wasn't tempted to stay in London to remind you of old times?

Ivan

User

Posted 16 Feb 2022 at 18:13

Excellent Elaine long may it continue 👍

User

Posted 16 Feb 2022 at 18:47

Thanks guys. And yes Ivan had the 2 nights here. Just on our way out to celebrate….which isn’t the best for continence 🤦🏻‍♀️😂

User

Posted 21 Feb 2022 at 15:41

Great news Elaine. Long may it continue like that. I have my next 3 monther next week so getting a bit nervous as always.

User

Posted 22 Feb 2022 at 00:47

Thanks Jeremy. Best of luck for your next test…I’m sure all will be good 👍🏽

User

Posted 30 Mar 2022 at 14:57

Not sure if I posted about this a while ago somewhere else 🤔 but just want to see if anyone has had this issue.

Over the past couple of months Rob was having episodes of a rapid heartbeat, generally very early in the morning before getting out of bed. Started infrequent and lasting around 10 mins….it then started to happen more frequently (almost daily) and sometimes lasting nearly 2 hours. We put off starting sildenafil because of this as could have made it worse. I think initially we put it down to being on HT but he had already been on HT about 4 months with nothing.

We were advised by our nurse consultant to let the GP know what was happening. He ended up having an ECG and tests which all seemed fine. He’s having the 24hr ecg next week.

So because of HT rob was prescribed Vit D to help with bones. He ran out a couple of weeks ago and we had to wait for the repeat prescription. In this time he didn’t get the rapid heartbeat but it came back as soon as he started to take them again. He’s not had anymore since and again everything has been fine.

Has anyone else had anything similar? Could be wrong about the Vit D but just seems too much of a coincidence 🤷🏻‍♀️

Thanks in advance for any advice

User

Posted 30 Mar 2022 at 15:11

I definitely don’t feel right in the mornings. The hot flushes start after my first wee ( 6am ) and when I get back in bed can be very shaky and have heart palpitations for sure. Normally the flushes don’t bother me once I’m awake and on my feet. HT can cause heart fluttering , but I too have had clear ECG’s over the last year. Not sure about Vit D although the cod liver oil I take daily has the full dose of D

If life gives you lemons , then make lemonade

User

Posted 30 Mar 2022 at 20:11

Thanks for the response Chris.

Maybe it is the HT then. It just seemed such a coincidence. He’s stopped HT now so happy to stay of Vit D aswell as he had a bone density scan which came back all fine. He may need to go back on HT in the future but will deal with it then.

Hope you’re feeling well 👍🏽

User

Posted 02 Apr 2022 at 15:53

Hi Elaine

My OH has experienced this on ocassion, more recently since the chemotherapy. He felt very faint and weak too. It may sound daft but we put it down to a fluctuation in blood sugars, electrolytes. My sister is a nurse and suggested having a fizzy drink on hand. Oh said it was amazing how it sorted things. X

Edited by member 02 Apr 2022 at 15:54 | Reason: Typo

User

Posted 11 Apr 2022 at 00:27

Originally Posted by: Online Community Member

Hi Elaine

Hope you’re OH is doing ok now and glad something has worked for him.
Rob has stayed off Vitamin D now for over 2 weeks and not had a single heart palpitation. He had a 24hr ECG fitted last week so waiting for the results of that….I’m assuming everything will be fine and we can say it was the Vit D that caused them. Take care x

User

Posted 19 May 2022 at 18:22

Just an update. 3 month check.
PSA <0.025
Testosterone 2.8

Really happy T level has increased slightly but PSA has remained undetectable. Early days and we’ll know more towards the end of the year….but really happy with this news.

Seriously can’t believe where we are compared with 10 months ago. I really hope for anyone just starting their journey they can take some comfort from our story so far. With such a bad original diagnosis to where we have got to. I never like to get too far ahead of myself but we are just so grateful for getting to this point.

Thanks again everyone on here for all your support, it really has been incredible.

Wishing everyone all the very best xx

Edited by member 19 May 2022 at 18:22 | Reason: Not specified

User

Posted 19 May 2022 at 18:47

Great news Elaine and long may it continue.

Both my PSA results post-operation, one on 04/03/22 & one on 18/05/22, both came out at less than 0.04 (the lowest that Addenbrookes test to) and opting for surgery was, for me and no doubt your husband, the best decision that could be made.

Ivan

User

Posted 19 May 2022 at 19:42

Thanks Ivan. Yes we are so grateful that we found a fabulous surgeon who would do the operation. We know we have to wait until his testosterone returns to see if anything is still lurking but we’re in the best possible position we could be right now….and no regrets whatever happens.

Grest news for you too Ivan, so pleased things have worked out well and long may those PSA figures continue for you also xx

User

Posted 21 May 2022 at 08:27

Great news Elaine. What is the importance of Testosterone levels post op? Whilst my PSA last week was <0.03 my testosterone was 8.4 which is over the upper advised limit. Is that a problem? It has always been on the high side tbf but now Im worried that might be a problem.

User

Posted 21 May 2022 at 09:10

Hi Jeremy,

Great news on your PSA aswell 👍

The only reason testosterone is important to us is because Rob was initially diagnosed with advanced PCa they put him on hormone treatment straight away and he had it for 6 months. He had his last injection in November. His testosterone in February was <0.4 so now it has increased slightly which means the HT is leaving his system. We just need his psa to remain undetectable as it increases more otherwise he’ll have to have SRT.

To be honest I wasn’t sure what his normal testosterone should be….I looked on the forum a few days ago though and saw someone post that normal for a man was between 7 and 27.

User

Posted 21 May 2022 at 12:16

Can anyone tell me if those testosterone figures are correct? Just wondering what we would be aiming for to get Rob's testosterone back to normal levels. Thank you x

User

Posted 21 May 2022 at 14:34

In UK, normal range is considered to be around 8 - 29 but it is accepted that for many men, testosterone levels get lower as they age so you won't be expecting him to get up into the high 20s!

Normal range T is less relevant to you at the minute though. Castrate level is defined as 0.69 or lower so in your case, monitoring the PSA post-op as the testosterone returns, you will probably get an indication of what is going once the T goes above 1.0

Identifying when a man's T reading is reaching the normal range (8+) tends to be more significant for those who are worried that their libido isn't returning or that HT side effects are not wearing off as quickly as hoped.

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

User

Posted 21 May 2022 at 17:28

Thank you so much Lyn, that’s really helpful.

It makes me feel a little more optimistic too with his T rising to 2.8 and his PSA remaining undetectable, although it’s not a super sensitive machine. I guess his August tests will help more for us to know if anything still going on.

Thanks for the advice as always, good to see you back on the forum…you were definitely missed x

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