Prostate cancer return.

User

Posted 01 Oct 2023 at 12:11

Originally Posted by: Online Community Member

They may give him a date to start the casodex when they contact you about the injection.

Got everything crossed that it will go well 🤞🏼

Thanks Elaine. I have been reading about your husband. I hope his journey goes well. You are similar in that I am quite a bit younger than my husband. I am 15 years younger.

User

Posted 02 Oct 2023 at 11:09

Thank you Wiosal. I think he must just have wanted a younger wife so always someone to look after him 🤣

User

Posted 02 Oct 2023 at 11:54

Lol, smart guy. My wife also 15 years younger and doing a great job keeping me going!! Zoladex not so bad and has very effectively put my cancer cells "to sleep" as my Oncologist put it. Hot flushes annoying, but not so terrible really. Could be that zapping lymph nodes not necessary if cancer not elsewhere, but I am getting my pelvic ones done at same time as my prostate. They are also considering zapping the ones close to the lower spine, as a precaution and as part of the "Pearls Trial" (think that is right name!). Anyway ladies, good luck with your other halves, we men do not always make the best patients!!

User

Posted 02 Oct 2023 at 12:36

Glad you are being well looked after Kerm 👍 best of luck with all of your treatment too x

User

Posted 02 Oct 2023 at 14:20

Originally Posted by: Online Community Member

Thanks kerm. You make zoladex sound not so bad. But having taken it myself I know it is, or at least was for me. That’s the thing about zapping the nodes, we’ve no idea whether this is an option. DH may have alreadt had the max. radiation to his pelvis with the brachy. We don’t know if it’s in lots of nodes or just a couple. The consultant didn’t say anything about further up the line. I am assuming it’s hormones indefinitely. Even the letter that came just says dh is to go on hormones due to rising psa. It doesn’t mention nodes. We feel a bit in the dark. Next telephone consultation is in November.

User

Posted 03 Oct 2023 at 20:11

Originally Posted by: Online Community Member

Lol, Could be that zapping lymph nodes not necessary if cancer not elsewhere, but I am getting my pelvic ones done at same time as my prostate. They are also considering zapping the ones close to the lower spine, as a precaution and as part of the "Pearls Trial!!

Kerm what did you mean by “could be that zapping lymph nodes is not necessary” ? thanks.

User

Posted 31 Oct 2023 at 21:51

It won’t allow me to make a new post. So I’m adding to this one and hoping it is seen.

Has anyone else suffered tummy pains on zoladex? DH is 2 weeks into zoladex and had tummy ache for 3 days now. He’s not one to ever get tummy pains. So I’m a bit concerned. He’s taken himself to bed. They started the day after he stopped the casodex.

User

Posted 05 Nov 2023 at 11:06

DH is still getting tummy pains, but they have eased off. That was strange as started a day or so after the casodex stopped.

3 weeks into zoladex the only real side effect so far is being tired. He’s asleep on the sofa by 8pm. Then about 9.30pm he will shower and go to bed. He’s out for the count all night. He doesn’t wake when I go up and put the tv on. He’s always woken early too, but now he doesn’t wake until I bring tea up. I hope he settles into zoladex and this isn’t our life now.
We have the telephone consultation next week. I’m not sure what to ask really. I was going to ask staging etc of the cancer as he’s not given any info. But probably not much point. I can see online it’s stage 4 now it’s in the nodes. The consultant seems to play everything down. So i feel I don’t want to ask much. DH had a psa test this week. So we will find out if the zoladex has reduced it. Though not sure 2 weeks is long enough to effect it. I don’t think he’s had his testosterone reduced much yet.

User

Posted 05 Nov 2023 at 11:39

He really should regard exercise as mandatory while on Zoladex (or any hormone therapy). It counteracts many of the side effects. Even just a walk is good.

User

Posted 05 Nov 2023 at 11:45

Thanks Andy. Yes we do 2 dog walks a day. Usually about a mile and a half to 2 miles each walk. Sometimes we go further. He’s usually out in the garden trimming hedges or doing other outdoor activities in the day like clay pigeon shooting. So he does move about during the day. It’s just evenings he’s asleep!

User

Posted 05 Nov 2023 at 18:56

Wiosal, stage 4 is when it has spread out of the prostate and invaded other local structures like the bladder, rectum etc, if it's only in the nodes you will get an N number on your original staging eg T3 N2.

You really need to get the oncologist to put in writing why those nodes cannot be zapped, then take that letter and get a second opinion.

Your husband is basically getting the same treatment my dad had 25 years ago! What about adjuvant chemo or Enzo? And of course he really needs to explain why a couple of nodes outside the original treatment area that may have been missed from before cannot be treated now. Otherwise it's HT for life...

User

Posted 05 Nov 2023 at 19:13

Originally Posted by: Online Community Member

Wiosal, stage 4 is when it has spread out of the prostate and invaded other local structures like the bladder, rectum etc, if it's only in the nodes you will get an N number on your original staging eg T3 N2.

You really need to get the oncologist to put in writing why those nodes cannot be zapped, then take that letter and get a second opinion.

Thanks for reply. The original diagnosis from 9 years ago says T0 N0 Gleason 3+3 before brachy. He hasn’t updated the letter, just kept it the same as 9 years ago.

At this point there is no cancer in his prostate as the brachy killed it off. So nothing to biopsy this time round so we won’t get those scores. The cells are only in the nodes in his tummy, we don’t know how many nodes involved. I am assuming it must’ve been in his nodes 9 years ago at the original diagnosis and has been lying dormant. I don’t understand enough about the disease to know how it is in the nodes and not in the prostate.

It says online once it gone into nodes away from the prostate then it’s stage 4a (with 4b being in bones) so I’m am assuming that’s where we are and incurable

The consultant said dh can’t have more radiotherapy as he’s had the maximum dose.

User

Posted 05 Nov 2023 at 19:53

I would also go for a second opinion. Some oncologists will treat more aggressively than others. It can be that once in the lymphatic system even if treated it could emerge elsewhere but treatment could buy more time. The Royal Marsden are known to get a lot of requests for a second opinion although there are of course other hospitals and consultants that could be tried.

Barry

User

Posted 05 Nov 2023 at 20:11

Thanks Barry. I am assuming there must be a good reason why the consultant said that. Does it depend how many nodes are involved, where the nodes are located and the fact dh has already had brachytherapy to the area? Also I’m assuming once it’s in the nodes it’s free to go anywhere and if it’s in nodes in the tummy does that mean it must be in the nodes next to the prostate? It didn’t show up anywhere else on the psma scan but is that accurate enough to pick it all up? I have all these questions that I would ask if we had a face to face consult. But it’s on the phone. I’m allowed to listen this time, but I have promised not to speak otherwise my husband says he can’t concentrate.

There is literally nothing on the letter to the gp. Just “please give zoladex going forward” It doesn’t even mention the nodes. I think I said that further up thread. I just wish the consultant would say it how it is.

User

Posted 05 Nov 2023 at 20:45

I think that 'staging' is a confusing word. In prostate cancer, there is two kinds of staging - a man can be T2 or T3 but stage 4 .... in other words, the tumour hasn't burst out of his prostate but it has metastasised. The problem in your case seems to be that the onco hasn't communicated clearly - he appears to be treating this as a stage 4 metastatic cancer but hasn't said so in a straightforward way. There is a tiny possibility that he has started the HT with a view to radiotherapy or SABR or something in a few months time and, somehow, this has been missed in the conversations and letter.

The difficulty is with your OH not wanting to rock the boat or have you asking questions - I guess that it would not be easy for you to persuade him to ask for clarity from the onco or a second opinion from someone else even though that's what we all think is needed :-(

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

User

Posted 05 Nov 2023 at 20:50

Originally Posted by: Online Community Member

DH thinks the consultant said he can’t have more radiotherapy as he’s had the maximum dose when he had brachytherapy. I understand he can’t have the prostate zapped again, but if the nodes are in his tummy then surely that is different.

Lymph nodes in the tummy area would usually be considered relevant to maximum dose.

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

User

Posted 05 Nov 2023 at 21:05

Thanks Lyn. You are always full of helpful advice. Any idea how it would be in abdominal nodes and not in the prostate? Does that mean the initial diagnosis was wrong? DH’s psa was 0.01 for 4 years. I remember you queried it being that low, so I looked on the hospital letter and it was definitely that low.

DH did ask if he can have radiotherapy and the consultant said no and that he’d had the max. dose already. So I am assuming it isn’t an option.

I guess staging doesn’t really matter that much as it won’t change things. I just wish the consultant explained to dh if he’s on a no cure course as that is what I’m assuming. DH seems to think he’s only on hormones temporarily. But as it’s in nodes with a psa doubling time of about 4 months, to me that doesn’t look that great. Also throwing in the fact dh carries the brca2 gene. PSA was 4.9 (2.7 3 months before) so it’s not that high. We will find out if it has gone down on weds as he had psa test weds. I’m not sure 2 weeks on zoladex is enough time to reduce it though (plus 4 weeks on casodex)

User

Posted 05 Nov 2023 at 22:38

I can't work out from your profile how old your husband is but if he is still young and in good health the Onco really should be discussing up front chemo or 2nd line HT even if only to rule it out.

He is being treated no different to how he would have been 25 years ago, that does not seem right.

User

Posted 06 Nov 2023 at 06:06

Francij DH is a young 66 fit and healthy (I’m 15 years younger and he’s as fit as me) the only health problems he’s had is a bad back. He’s a retired farmer. He’s never ill either. So it’s strange seeing him so tired.

The letter from the consultant, which has disappeared, says due to psa raising please give zoladex going forward, then it adds that if DH tolerates zoladex well then he will add another drug it was initials, but can’t remember the drug.

Edited by member 06 Nov 2023 at 15:12 | Reason: Not specified

User

Posted 06 Nov 2023 at 15:14

I found the letter. DH had filed it but it was randomly in among his paperwork rather than in date order.

So it says he will discuss adding ARTA if dh is getting on well with zoladex. I think these are drugs like enzalutamide, abiraterone, I’ve seen people on here mention them. But I don’t know anything about them. Does that sound like the right way to go?

Edited by member 06 Nov 2023 at 15:20 | Reason: Not specified

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.