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User

Posted 19 May 2021 at 18:21

Hi Leila, as he still has a prostate (even though it will be a fried prostate) he will produce PSA. As long as it stays below 2.1 (2.0 plus his nadir) all is well. It is also pleasing to see his testosterone recovering so well - are the worst of the side effects wearing off as the testosterone rises?

If the PSA gets to 2.1 I would start asking about an onco appointment.

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

User

Posted 19 May 2021 at 18:23

Hi Leila, it’s always a worry when the PSA goes up. Although 1.0 is still pretty low, I understand the rise from 0.3 is worrying . Have you got a appointment booked with your consultant to talk it over?

They told me my PSA could rise to just over 2 after RT and Brachy.

I suspect you’ll have to wait for another test yet as 1.0 is still below the threshold that they think means recurrence. Is David on 3 or 6 month checks ?

Hoping for you that it’s just a blip and it will maybe settle at 1.0.

It’s living on a tight-rope isn’t it...

Best of luck to you both .

Phil

Edited by member 19 May 2021 at 18:36 | Reason: Not specified

User

Posted 19 May 2021 at 19:01

Thanks Lyn & Phil,

Yes Lyn the side effects of the HT have more or less worn off. He’s quite keen on a bit of fun these days 😉He is concerned that the rise could be an indicator. David is a born worrier to the point where he leaves all the investigations to me, he’d be happier if I did all the talking or asking questions. The whole things really gets to him, hence me being here not him.

Thanks Phil, it’s difficult, David loves life, has plenty of living to do at 70, he feels he’s no where near hanging up his spurs for ‘ old age’ he still sings & plays every day, though no gigs now due to current climate. He gardens, and we both enjoy a flipping good life. I’m hoping it’s a blip, fingers crossed.He has his PSA every three months, though he’s chomping at the bit to have one tomorrow. I’m trying to talk calm to him down.

Thank you both

Leila

Edited by member 19 May 2021 at 19:24 | Reason: Typos

User

Posted 19 May 2021 at 19:20

Gunning for you both xx

User

Posted 19 May 2021 at 19:27

Thanks Chris, he’s a right mess this eve, I think I might have to take him to the pub.

Leila x

User

Posted 19 May 2021 at 21:22

That’s my kind if wife lol. You can get through this I know. I truly believe it

User

Posted 19 May 2021 at 23:52

Hi Leila, as you may recall my diagnosis and treatment is the same as your husbands, so I am watching this thread. I am now off HT so my psa is now starting to rise, but still at a very low level. With the testosterone coming back the healthy prostate cells should be waking up and doing something.

The testosterone going up is definitely nothing to worry about. It is supposed to return to normal, and it is not a marker for cancer. PSA is only a cancer marker if it is high; your husbands is not (and don't go saying "not yet", it was going to rise when he came off HT, what number were you going to be happy with? )

I have resolved to myself not to worry unless it goes above 2.1. After all that is the definition of recurrence so why worry if it hasn't recurred. I do have the advantage of not being a natural worrier though.

Good luck. I was going to say "good luck and I hope it stays low", but I think I shall say "Good luck and I hope it stays below 2.1" (of course I am being a hostage to fortune with such an optimistic attitude, but optimists are always happier than pessimists)

Dave

User

Posted 20 May 2021 at 00:08

Hi Dave, Thanks for your reassuring post, I’ve managed to get David to read it! He is sadly a natural worrier. He always seems to look at the negative first and he can get fixated, so a positive post helps a great deal.

Thank you.

Leila

User

Posted 20 May 2021 at 00:35

Thanks Leila, I'm glad you got him to read it, and see how one can be positive. I do worry (ha ha, and I said I'm not a worrier) that some of my posts can be taken the wrong way, so I do appreciate knowing that I'm getting the tone right.

Dave

User

Posted 21 May 2021 at 01:42

Hi Leila,

It's very uplifting as a G9er following a few years behind your husband how very well things are going for him.

I noticed earlier in this thread you mentioned 'He has developed pains and discomfort under his right rib cage, sometimes a sharp pain sometimes a dull ache.' Was that ever explained, and did it go away?

I'm experiencing much the same, though currently just 3 months after RT and 9 months into 3 years of HT. I'd be very interested to know whether it was ever pinpointed what the problem was.

Thanks,

User

Posted 21 May 2021 at 21:16

Hi DaveHz,

Thanks for you post. David is worried as his PSA has gone up from 0.3 to l.0

Although 1.0 is well within safe realms he’s worried sick at the increase. His PSA has been between <0.1 & 0.3, last PSA was 0.3 so a bit of a rise.
He’s a born worrier, and a perfectionist, the mixture can make for hard going sometimes.
I’m working on him getting back into a more positive mode, I’m sure he will move on to more positive thoughts soon.

The pains, yes he still gets them, not all the time now. He’s has had scans and Dexa bone scans and all seems to be ok. This is the first real bit if ill health he’s ever had and it’s been hard for him. He also finds medical intervention very stressful, he hates not being in control.

So, in essence his doing very well, but the psychological aspect to a more positive mindset will follow. He plans to have another PSA in two months, or near that.
He’s watching his footy tream’s under eighteens team playing this eve on the TV that will be good for him.
Music, gardening,world affairs economics and reading are his passions. He does all every day, and has lots of positives in his life.

Thanks for your post, you G9ers are a special bunch of lads.

Leila x

Edited by member 21 May 2021 at 22:32 | Reason: Not specified

User

Posted 05 Jul 2021 at 15:13

David had been looking a bit off colour for a couple of days. Yesterday he had chest pains, he hates being ’interfered’ with and I was told oh it’s just indigestion, mmmmm. Is it. Off to our local hospital after two failed attempts to contact 111

David is seen quite quickly, and I’m sat in the car park no idea what’s going on, not allowed to go in the hospital. Eventually I’m advised he’s having ECG and blood tests. Another long wait in the dark car park, too dark to read my book.
Another update, he’s staying over night, so I’m off home. Today I hear he has had a ‘cardiac event’ and needs a stent but Aberystwyth doesn’t do them, so we have to see if Swansea can fit him in otherwise it’s blood thinners.
The stent needs to be fitted within three days, so we wait. He has no signal for his phone,so I don’t really know what’s going on.
Just as we were beginning to think we are doing well! David doesn’t like hospitals, he hates not being in control, or left in the dark. I’m hoping Swansea Morriston Hospital can do the stent, or I may see if he can go somewhere else to get the deed done. Ok, I’m rambling now. I knew being on HT for three years had side effects but I hoped he’d been lucky.
thanks for reading I f you have.

Leila x

User

Posted 05 Jul 2021 at 15:37

So sorry to hear this Leila. I hope David can get his stent done quickly and then hopefully back to normal - whatever normal is …..

Good luck 🤞

Phil

User

Posted 05 Jul 2021 at 15:45

So sorry to hear this Leila. I freak out in hospitals too so I get that. Utter panic. Good luck and best wishes x

User

Posted 05 Jul 2021 at 15:56

Leila. I spent 3 weeks in Aber after my op, there is really good WiFi that is free but you have to register on your phone...

User

Posted 05 Jul 2021 at 16:03

Hi Leila,

You know we are always here for you. Yes it's a bit of a shame having the "cardiac event", it probably has nothing to do with the HT or the cancer. Life just throws these things at us and we do our best. It isn't that unusual to need a stent in your 70s or sometimes younger. I'm afraid us humans are a bit like an old car, the clutch goes, it won't cost too much to replace it, then the radiator goes, it won't cost too much to replace it, then the ... goes, eventually you realise it's time for the scrap heap.

I'm not saying David should be going to the scrap heap just yet, I'm sure there is a lot more patching up they can do, it might be years before the next thing that goes wrong. Though for my old car it was only six months between the clutch going and the radiator going, so off she went.

Just seen francij post about wifi, sounds a good idea, you can then use WhatsApp or some other app to do free calls without needing a mobile phone signal.

Dave

User

Posted 05 Jul 2021 at 18:05

Thanks for that I’ll see if can do that. David is a bit like the late John Macafee, he’s very tech savvy but chooses who he communicates with.

i’m going to take his iPad to him, he can then write down what he can’t say. another trip to sunny Aber.

Leila.

User

Posted 05 Jul 2021 at 18:17

Ahhh, thanks for the support, it’s is so good to know you are there. David is computer savvy, clever and articulate, but he doesn’t like phones, he has a mobile, but it’s a pay as you go used maybe three times in the last two years. So, I’m taking his iPad there, he can then write to whoever he wishes. It seems the stent can only be done at Swansea, and only if they have space.so fingers crossed they have a slot for him.
Living rurally is great until something like this happens then its a pain.
I’ve just spoken to him, chest pain abated, seem not too much damage, he will have meds to dissolve the clot.I assume he will have warfarin (rat poison) That’s the total conversation from him.
when he can write I’ll get a full report.
thanks for being there.. it really helps.

Leila xx

User

Posted 05 Jul 2021 at 20:41

RT/HT. Nigh on 17 yrs later my profile shows PSA still moves around a bit.

Ray

User

Posted 05 Jul 2021 at 21:56

Thanks Ray, all this positive stuff is passed in to him.He was asked about a DNR today, well, that wobbled him big time! Just what he needed. He has his iPad now and I’ve chatted to him. Assuring him I am not looking to be a “widda of the parish “ just yet.
His PSA is due next week too.
once again thanks for the support.

Leila x

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