I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

«<56789>»

After Hormone Therapy

Email this conversation Print this conversation
User
Posted 15 May 2021 at 20:19

Latest update : PSA gone up to 4.4 now (2.75 last time). I emailed my s/nurse for my results and to move my consultation as we were in Jersey. She has re-booked for 2 weeks time. Not sure what my consultant will say. Possibly wait for another test before we do anything. But I suspect it’s back on the dreaded HT. Not sure what else there is left in the locker after Brachy and RT.

Its funny but I was just feeling like I’d got the HT from my system. Feel a bit gutted I have to say. I didn’t even get a good run of remission.

Phil

User
Posted 15 May 2021 at 21:25

Sorry to hear that Phil.

Going back on HT can’t be easy either mentally or physically.

I wish you well.

 

 

User
Posted 15 May 2021 at 22:06
Sorry to hear this Phil really am. Maybe if you have to , put your foot down given your age and ask for a different HT. I insisted on Decapeptyl after other members comments and input. He wasn’t happy ( maybe cost ) but agreed. Nowhere near as bad as I thought tbh. Yes they all castrate you and have the same end result , but they are all different drugs and hence varying side effects. Good luck mate
User
Posted 15 May 2021 at 22:26

Can’t say I’m not sh*tt*ng myself about going back on the HT. I was reasonably lucky with the physical side effects but mentally I really suffered. My counsellor says I had so much crap from my childhood I hadn’t dealt with to sort out in my head that I won’t get next time so it should be easier on my mind. Hoping she’s right.....

I have to just wait now. I do expect my consultant will want another PSA test before anything is decided. 
I have a close friend who’s treatment didn’t work either and he’s dealing with it really bravely. Not sure I’m that strong ... we’ll see.

Take care guys. 
Phil

User
Posted 15 May 2021 at 22:35
You are strong Phil -we all are, faced with adversity. I had 2 yrs of councelling to get me through childhood issues and it helped me immensely. And you may need more if you can afford it. I think it’s worth it tbh. Just for someone to offload to really
User
Posted 16 May 2021 at 13:05

Really sorry to hear your result Phil, what a blow!  It’s difficult knowing what to say but I did say an expletive when I read your post late last night.   You’ve  already shown you have great strength with all you’ve been through.... I understand your panic regarding how going back on HT may affect your mental health again but you have obviously fought hard to be where you are and it sounds like you are so much stronger now, so keep fighting. I sincerely hope, if you do need HT again, that you won’t be affected in that way.

All best wishes for your consultation.

Ange x

User
Posted 16 May 2021 at 19:17

Phil, sorry to hear this. I'm almost exactly a year behind you, also high risk, similar treatment, and can't help thinking what if...

I would ask for a PSMA PET scan before you go back onto HT. It might just find something which is still treatable with SABR/Cyberknife.

User
Posted 16 May 2021 at 20:28

Thanks Andy , I will investigate before my next consultation 👍.

I think at the moment I am in a bit of denial....

Phil

User
Posted 17 May 2021 at 11:18
Oh Phil, that’s hard. David is due his PSA this week, as you know he’s G9 too. So far he’s been wobbling between 0.1 & 0.3. Like you he’s fearful of going back on the dreaded HT

It is something that is always in the back of our minds.

Take care Phil, let’s us know what avenue you take. Don’t think you are not strong, you lads are amazing, all of you.

Leila x

User
Posted 17 May 2021 at 13:00

Thank you all for your kind words and thoughts. It’s so good to be part of this community, but I honestly didn’t think I would be on here talking about recurrence 6 months ago.

Andy, I see you’re quite knowledgeable on the Hormone Therapy treatment. I saw the other day that the male version of the pill stops Testosterone being produced. Does this not cause all the issues we know about with lack of testosterone or have they found a way round that ? I can’t imaging anyone taking it willingly if it had side effects.

I also looked up Cyberknife and I see you need to be able to ‘see’ the cancer for it to work. I imagine that for me that could be a way off yet as they often can’t find what’s causing the raised PSA until it gets higher.

Thanks again everyone 

Phil 

User
Posted 17 May 2021 at 14:11

Phil, what male pill are you referring to?

With a PSA of 4.4, there's a good chance a PSMA PET scan will find it. Even an older/cheaper Choline PET scan has a good chance. Depending what facilities your treatment centre has available, you might need to be referred to another treatment centre.

User
Posted 17 May 2021 at 14:16
Hi Phil, the male contraceptive pill is still many years in the future mainly for the reasons you identify - a contraceptive pill would need to block testosterone and many men would not be willing to live with the side effects of that. One trial is looking at a hormone that blocks the testosterone production but also provides synthetic testosterone to reduce side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 May 2021 at 16:38

Andy, Lyn, I think I saw it last week that they were trialing a gel you put on your shoulder. I wondered if it would be any help in PCa especially with synthetic testosterone to lessen side effects. That would be great for ‘lifers’ like I might be.

I wasn’t sure they would be able to see cancer from scans with a PSA of 4.4. Not sure of next steps . Will they do a scan to see if it’s actually spread to somewhere else? 
I didn’t do much research on recurrence or not destroying the damned PCa first time round as I was trying to be optimistic.

Thanks for listening 👍

Phil

User
Posted 22 May 2021 at 09:55

Phil,

I just looked up how the gel works. It's a progestin (synthetic progesterone) plus testosterone.

Progestin does the same as the GnRH hormone therapy drugs (Zoladex, Prostap, Decapeptyl, Degarelix), but not as well and it's cheaper. This will shut down the two hormones produced by the pituitary gland which are used to signal the testicles:

Luteinising Hormone (LH) is used to tell the testicles to produce testosterone.

Follicle Stimulating Hormone (FSH) is used to tell the testicles to produce sperm.

(I cover this in detail in my How Hormone Therapy Drugs Work lectures.)

This will stop sperm production, but will also stop testosterone with all the associated symptoms we know only too well here.

So adding Testosterone too will will replace that which isn't being produced by the testicles anymore.

To answer your question, no this wouldn't be any use for prostate cancer treatment, as the added testosterone will mean the prostate cells are activated as normal. I also wonder how well controlled the resulting testosterone levels are. I could imagine some men using it to excess as a form of testosterone replacement therapy to boost their testosterone.

User
Posted 22 May 2021 at 10:46

Thanks Andy, 

Good information , but obviously not for PCa then ....

Well hopefully they will come up with something better than Hormone Therapy eventually....

Phil

User
Posted 27 May 2021 at 17:33

Just come off phone with consultant. They are booking a bone scan and MRI of the prostate within the next week or 2. PSA test ASAP so I have results when they call me next in a month. Would like a face to face really, now things are a bit more serious.

But at least things are moving reasonably quickly now .
Makes my stomach flip a bit but it is what it is .....

Phil

User
Posted 02 Jun 2021 at 12:51

Have test dates now - Bone scan 8th June, PSA blood test 9th, cystoscopy 10th, MRI of prostate 11th. Consultant telephone call 24th , although I might ask my specialist nurse if they can do a face to face. Hearing your cancer had come back over the phone is pretty brutal.

Hope everyone is enjoying the weather ☀️ 

Phil

User
Posted 11 Jun 2021 at 10:40

Quick update: Had my cystoscopy yesterday to check for bladder damage or tumour. All clear so that’s good. Maybe I had a bladder infection as the Solifenacin and Tamsulosin seems to have helped.
Whilst in there the doctor told me my bone scan from Tuesday was all clear which was a relief . He also said my PSA from Wednesday had gone up slightly to 4.9 from 4.4 in 6 weeks. So the rate of increase is reducing. 
So I presume now my MRI today will see if I have recurrence in the prostate bed or lymph nodes. I did have the local ones zapped with the RT .

So I have a face to face on 24th when I will find out the next course of action. I presume if they don’t see anything on the MRI we will wait for another PSA test .

Phil

User
Posted 11 Jun 2021 at 12:22
Sounds like you roughly in the same boat now as I was ! Constantly rising PSA but scans and exams constantly came back clear , until they didn’t , and then got quite ill. I guess you get forced into a corner like I did where you have to have HT. You can do it earlier again , or hang on and enjoy QOL like I did. No easy answer
User
Posted 11 Jun 2021 at 12:59

I just have to wait to see what my consultant says on the 24th. If the MRI shows nothing do you think I should ask for a PMSA-PET scan ? I heard that it’s more accurate. Don’t know if my hospital does them though.

So Chris, how are you doing on the HT now ?

Phil

 
Forum Jump  
«<56789>»
Email this conversation Print this conversation

Similar Topics

After hormone therapy stops by 20cwmdu
in Localised cancer

Join the online community now.

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




MenuTop ▲
©2025 Prostate Cancer UK