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My husbands recent diagnosis of advanced prostate cancer

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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

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

User

Posted 08 Aug 2022 at 14:36

Rob had his PSA and testosterone blood tests last week 3/8/22

Latest PSA <0.025

Testosterone 7.3

So good news for us that his testosterone has risen significantly and close to normal range but PSA has remained undetectable. I know we were always told he would need RT after surgery but really hoping if things remain stable as they are that he won’t 🙏🏼🙏🏼

Really struggled this time waiting on his results. I know alot talk about PSA anxiety and boy did I have that last week 🤦🏻‍♀️ really need to work on this in the future as I will certainly be in my grave before him if I don’t 🤦🏻‍♀️😩

Hope everyone is doing well and wishing you all the best x

User

Posted 08 Aug 2022 at 15:36

Great news for you both and a celebration for sure. Best wishes x

User

Posted 08 Aug 2022 at 16:33

Originally Posted by: Online Community Member

Great news for you both and a celebration for sure. Best wishes x

Thanks Chris, hope you’re still doing and feeling well x

User

Posted 08 Aug 2022 at 17:27

Originally Posted by: Online Community Member

Really good result, I don't think you could have asked for anything better.

Whenever you have PSA anxiety sing to yourself "Que Sera Sera" by Doris Day. I know Doris isn't singing about PSA Tests but she is singing about an uncertain future, and an uncertain future is always more exciting than a stayed present, or settled past.

Dave

User

Posted 08 Aug 2022 at 18:15

Very good result it's always a stressful time but not a lot we can do either way just keep battling away 👍

User

Posted 08 Aug 2022 at 23:43

Originally Posted by: Online Community Member

Really good result, I don't think you could have asked for anything better.

Thanks Dave. yes definitely couldn’t ask for any more, I know nothing is certain with this disease but didn’t think we would be at this point 12 months ago. So grateful and just hoping it continues like this for a long time to come 🙏🏼
I think I could do without the excitement of an uncertain future 🤦🏻‍♀️😂

Hope all is still good with you x

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