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HT a question for the wives

User
Posted 16 Oct 2023 at 10:01

Originally Posted by: Online Community Member
Wiosal you guys should get a second opinion.

He has a single recurrence outside the area of the original treatment. FFS the lymph nodes could be surgically removed even if further RT is out of the question.

I am assuming they don’t offer to remove the nodes because once it is in the nodes it is free to go other places, so could be in other nodes too or further afield. Psa was 4.9 at the time of scan. The scan was 7 weeks ago. So it’s had time to travel (baring in mind psa had doubled in just under 4 months previously) 

As I said above dh had brachy. So I’m assuming he can’t have any radiotherapy at all now as it radiates a much larger area than if he’d had beam therapy. 

User
Posted 16 Oct 2023 at 11:29

Wiosal, do you know the name of the lymph nodes involved, my correspondence to the GP  gave the names /location of the nodes. If you have details of the nodes it may be worth a call to the nurses on this web site. I had salvage RT of 66gys to the prostate bed then had 40gys to one node and 30gys to another node. I moved from the NHS to the private sector because they will treat more locations. 

Some nodes may be inaccessible or too close to other organs. Not sure at what point cells become a tumor, but my oncologist referred to mine as tumours,the radiation staff did say my second lymph node tumor was the smallest she had ever treated.

Thanks Chris 

User
Posted 16 Oct 2023 at 11:37

Originally Posted by: Online Community Member
Thanks for your reply Misty. He hasn’t been offered sbrt he was told he can’t have any more radiotherapy. I am assuming that’s because he had brachy. Apparently the cancer is only in lymph nodes behind his belly button, none in his prostate. So it seems silly for there to be no cure when there is no tumour feeding it.

I would challenge this. If it's in too many lymph nodes, it won't be possible.

What I have seen is that if your hospital can't do SBRT, then they may not offer it, but you could ask to be referred somewhere that does do it for a second opinion.

Previous brachytherapy won't be a reason not to do it unless the lymph nodes are in contact with the prostate.

Edited by member 16 Oct 2023 at 11:38  | Reason: Not specified

User
Posted 16 Oct 2023 at 14:37

Thanks Chris. The letter to the gp doesn’t even mention nodes. It just says due to rapid psa doubling time, please administer zoladex ongoing. DH’s gp was surprised to hear it is in the nodes. 

User
Posted 16 Oct 2023 at 15:40

Wiosal surgical removal is performed where appropriate.

There is an interesting discussion here from the originator of treatment for oligio metastatic PC:

https://youtu.be/wmfFreLCxBo?si=AW77NZxCKfSeXn1z

 

If you look at other Dr Kwon videos he discusses all of the options.

User
Posted 17 Oct 2023 at 11:46

I am 10yrs older than my wife, if anything this condition has been a very humbling experience. I am one those blokes who used to think with their d!cks and would not hang about in a sexless marriage and if I did I would be pretty unhappy! However, getting this condition has humbled me and shown me there is more to life than a hard-on. The lack of sex on tap, (due my inability to maintain an erection) has really brought me off from my high horse. My wife incidentally is at the onset of menopause, been bleeding constantly for the past 2.5mths, sex is the farthest thing on our minds at the moment. In a way I feel it is karma that I had my condition first to help me better understand that there is more to life than having sex! I am fairly certain, if I did not go through my experience and with the way my wife cared for me, I would have strayed when she went through this phase!

User
Posted 17 Oct 2023 at 12:16

Originally Posted by: Online Community Member
As I said above dh had brachy. So I’m assuming he can’t have any radiotherapy at all now as it radiates a much larger area than if he’d had beam therapy.

This is the wrong way around. Brachytherapy has a quick treatment drop-off at the edge of the target area, whereas external beam has to travel through tissue to get to the target area and also passes out the other side of the body, so it treats a larger area. That can have advantages in that it will often mop up micro-mets outside the target area, versus brachytherapy which spills outside to a much lesser extent, but that also means a higher effective treatment dose can be delivered with brachytherapy.

So the fact he has brachytherapy means recurrence outside of the original target area is more likely to be treatable with more radiotherapy in the form of SABR/SBRT.

User
Posted 17 Oct 2023 at 14:48

I am fortunate that my wife is not that interested in sex being in her thirties she isn't that bothered we seem closer after giving it up after the spontaneous actions were no more we didn't want to use pumps pills ECT for an act that is a million miles off what it used to be she also feared it might cause a relapse we seem closer than ever these days sad but true 

User
Posted 17 Oct 2023 at 17:15

Just curious. Is you wife her thirties?

Pratap

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 17 Oct 2023 at 17:17

Thanks Andy. I just feel there must be a reason it was not offered. DH asked if he could have radiotherapy and the consultant said no you’ve had your maximum dose. 

User
Posted 17 Oct 2023 at 17:21

Gee baba. Thanks for your honest reply. I think if the tables were turned DH wouldn’t hang around. But I’ll never know, maybe he would. Each time I got pregnant (3 sons) the first thing he said was “great, no sex for a few months when it arrives” 

User
Posted 17 Oct 2023 at 17:34

Yes 38 years old and lovely 😁

User
Posted 17 Oct 2023 at 19:38

Gaz I’m a quite a bit older than 38. I wish I could say I have no interest in sex. I have a much lower sex drive than DH but I can’t bare the thought of never again. 

User
Posted 17 Oct 2023 at 19:54

I see where your coming from wiosal it is sad I know but it is one off the horrible things with this desease good luck to all who get less off the side effects and can manage sex as normal but it kills the passion when you have to do this and that too achieve something that's nothing like what you had previously I am lucky I have a partner that doesn't put a big thing on sex and we have a lot in common that keeps up close 

User
Posted 22 Oct 2023 at 01:53
If you can find old threads from a past member, Alathays, you might feel a bit better. While most men lose their libido very quickly once the injections start, it doesn't happen to everyone and Alathays is a great example of that. He never lost his desire or his ability to have penetrative sex, even in the end stages when he was trialling things like abiraterone / enzalutimide!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Oct 2023 at 15:24

Thanks for reply Lyn. I wondered why I hadn’t heard from you, your posts have always been very knowledgeable. I’m expecting dh’s libido to go…it just feels strange that he will change. As long as he doesn’t get frustrated about it I guess I’ll learn to live with it. 

User
Posted 22 Oct 2023 at 16:51

The men I know on this treatment path, don’t get frustrated, they just lose interest in sex because they have no libido. I would think he would more likely to get frustrated if he had libido but couldn’t use it.

I get sad rather than frustrated at times. I was in a car park in Fuerteventura today driving my car out and stopped to let a couple cross my path. The man gave the woman a playful pat on her bottom to get her to hurry up and I thought to myself…when I ever did that before(to my wife of course 🤣🤣) I got aroused….and now…nothing😟…except love, which I’ve learned to accept.

User
Posted 22 Oct 2023 at 17:14

Yes I can imagine it’s sad. I was feeling sad at the thought of him changing. But I’m slowly coming round to it. DH has been on bicalutamide 3 weeks (only on for 4 weeks) and one week into zoladex, he is very pleased at no side effects from either yet. Apart from itching on his tummy and top of legs (I hope that’s not a reaction to zoladex) 

I think the side effects won’t start until he’s been on zoladex 3 or 4 weeks. I know when I was on it I had no side effects for the first month.

User
Posted 22 Oct 2023 at 17:45

Funnily enough one one of the guys at Maggies on Friday was saying he’d only been on Prostap for a few weeks and got a mild flush. he said to his wife ‘I don’t know what all you menopausal women are complaining about!’ Then Bang! I was the same!
He thinks differently now🤣🤣🤣

My joint aches started about 9 months into the HT treatment  but I think it’s different for everyone, hopefully DH will sail through it and even keep his Libido(although I would be worried about the HT not  working if that had happened to me!). When if get back from holiday I’m going to get a full set of blood tests(privately) just see how healthy I am and if I have ANY testosterone left in my body.

User
Posted 22 Oct 2023 at 18:41

DH already has a bad back. He had an mri 7 years ago, they said degeneration of the spine and the only thing they could do was operate, they said they’d put a cage round the effected bones. DH turned that down but it is getting worse. He has days when walking is too painful, but after a few days rest it’s ok again. He has to remember not do things that upset it all, like leaning over cutting hedges. He was convinced with raising psa the cancer would be in his spine, but it didn’t show it there. I am a bit concerned how zoladex will effect his back. But the gp told him it doesn’t effect bones. Google tells me different. But I really should stop looking on google. I’ve already seen that a stage 4 prostate cancer (I’m assuming it’s stage 4 as consultant hasn’t actually said) along with the brca2 gene isn’t good. So I’m trying to not look stuff up now. 

 
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