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HT injections every month?

User
Posted 16 May 2021 at 18:13

Hi folks, I’ve been reading so many of your experiences and like most I am struggling to make a decision on treatment. I am extremely grateful for this forum and hope it will help me reach a conclusion! My father was treated for PCa at 67 (he’s 82 this week) so I asked for a PSA test whilst at the GP for other blood tests. No symptoms other than getting up once most nights for a pee, but I enjoy a pint or two of an evening!

I’m 52 and was diagnosed 6 weeks ago with a PSA of 3.96 leading to an MRI, which showed a dark area with my prostate. I was given the choice of AS or biopsy, chose biopsy which later showed T2c, N0 Mx and 14 out of 18 samples being cancerous, Gleason 3+4. Cancer appears to be contained within the prostate and I have been given the choice of EBRT (20 fractions), BT or RP. I’ve also been offered the PACE 3 trial. Only thing is that I have a Carotid Artery Dissection, which is a tear in one of the two main arteries in my neck, following headache and very slight stroke symptoms - it wasn’t a stroke thankfully but it was this that got me to the GP in the first place. It ‘should’ heal by itself in six months. Needless to say surgeons won’t touch me for RP until it has healed (which hopefully is only six months but could be longer).

In the meantime I was straight away put on Bicalutamide 150mg daily, with twice weekly Tamoxifen 20mg to hopefully prevent beast cancer. However after meeting with my oncologist for the first time I was taken off both of these, as Tamoxifen has a slight risk of clotting (I am on a platelet drug to help my artery heal). So I had a Zoldex implant injection and have another one tomorrow, with monthly injections for a total of six months. This is to keep the cancer within the prostate whilst I make my treatment decision. Reading other HT experiences it seems most injections are every three months, but for a couple of years. I asked my PCa nurse why mine seems quite intensive and she replied - “As your disease is Gleason 3+4=7 it is not high risk.  This means that you will only need to be on hormones for 6 months.  It is better to have the monthly injection rather than the 3 monthly when you are on them for 6 months rather than 2-3 years as it will allow your bodies normal hormone levels to return quicker once the injections stop.  We would not expect to have to continue the hormones for longer than 6 months on any of the treatments.”

So has anyone had the same HT treatment as this, and was it ok? I’ve never suffered from moobs despite not being particularly thin but I’m definitely getting a warm sensation in my breast tissue from time to time and the occasional hot flush. Just wondered what else I could look forward to after a further five injections! Also I’m seeing the oncologist again on Thursday, and I still haven’t made a decision on treatment. I really am struggling to decide, hoping the HT contains things for the time being.

Sorry for the long winded post!

User
Posted 26 May 2021 at 14:52

It's worth understanding that there are two types of breast growth.

There's growth of the breast buds (which can also be sensitive/painful). This is the type of growth which Tamoxifen or radiotherapy blast to the breast buds can solve. Tamoxifen is about 70% effective, and radiotherapy blast to the breast buds about 50% effective.

There's also breast fat growth, and I don't think either of these will help with this. You have to watch your diet and avoid putting on weight.

Bicalutamide when used by itself tends to cause breast bud growth (although not in the 4 weeks of protection against testosterone flare), and the injectable hormone therapies tend to cause breast fat growth, but this can vary in people and both types of treatment can cause both side effects. Some oncologists will give Tamoxifen when starting Bicalutamide (again, not needed for just the 4 week dose). I was refused this when I asked, but given it the day I started feeling breast bud growth, and it not only stopped that, but reversed it too. It can only reverse recent breast gland growth, not anything that's been there a while.

You usually can't have Tamoxifen if you are thought to be at risk of DVT, or in the case of some heart conditions, or if you are on Estradiol patches on the PATCH trial. Some people may find their livers don't tolerate it either (although at the low doses used here, typically 2x20mg/week, that's rarely a problem).

User
Posted 17 May 2021 at 13:32
Hi Damon, the HT will shrink the cancer and give you time to decide on which treatment option you want to opt for. Because of your artery problem the surgical risks are probably much higher. If surgery is ultimately your preference I would ask what the overall risks are even after your artery has healed. That way you can make a proper informed decision. Either treatment should have an excellent chance of success, ask your oncologist for a predicted success figure for EBRT or brachytherapy. Ask the surgeon for that too.

All the best.

Ido4

User
Posted 17 May 2021 at 18:19
Hi I started HT 4 months ago (Decapeptyl). I asked for monthly for the first 3 months to check if I could handle it. It’s been ok tbh and the Bicalutamide gave me worse side effects. I’ve now moved onto 3 monthly jab. I think monthly makes your body swing worse as the levels rise and fall. So essentially it took me 5 1/2 yrs to get to this stage. I too dreaded HT after the aftermath of recovering from surgery. But generally I’m ok physically and mentally and sex function wise. I guess I should be grateful .....

Good luck

If life gives you lemons , then make lemonade

User
Posted 17 May 2021 at 18:57

Thanks ChrisJ and Ido4, I’ve learned today that the monthly dose is lower than the three monthly one, which makes sense. I was on bicalutamide for about four weeks and there was a two week overlap after the first Zoladex injection, so I’m 6 weeks in. I’m feeling generally fine so far but think I am noticing some subtle bodily changes, might be my imagination! GP told me today that he’d had a letter advising that the vascular/neck artery department have cleared me for LDR seed Brachtherapy but with a spinal anaesthetic rather than general anaesthetic. I have a bit of needle phobia so shudder at the thought, but will not exclude that option because of that. I must admit I’m leaning more towards BT or RT, as I believe I could have either this summer, with the torn artery hopefully healing in the background. This means 6 months of HT, 6 months of artery recovery and BT/RT could all be done with by autumn, finishing at roughly the same time. I accept there will be side effects throughout autumn and into winter but would like to think the worst will be over around Christmas. My big worry is that I wait for the artery to heal before making a decision, and then it doesn’t - or takes a year. Decisions, decisions.....

User
Posted 18 May 2021 at 16:55

Glad to hear you are feeling generally fine, you will notice body changes with HT so that’s normal. Good luck deciding a way forward, keep us posted.

All the best. 

Ido4

User
Posted 26 May 2021 at 12:11

Hi Damon C

I'm about to embark on the HT and EBRT - its been around 5 months since I was diagnosed.

My PSA was 18

I've had a bone scan about 4 months ago (was clear then)

Then Biopsy T2a  but gleason score was high risk 9 on one side 6 on the other

I opted for the RP, but surgeon asked for a PET scan which showed that it may have spread into Seminal Vesicle so suggestion was HT plus ERBT

I'm going to the hospital tomorrow to speak to the consultant and nurse re starting HT

I am concerned about the side effects - I understand you can have radiation treatment and/or medication to prevent gynaecomastia - do you know anything about this and have you considered this??

Have you any advice as to what I should ask etc?

User
Posted 26 May 2021 at 12:49
Research suggests that tamoxifen can prevent or at least minimise breast development if it is started early enough. Tamoxifen does have its own side effects though.

A couple of blasts of radiotherapy to the breast buds can prevent breast growth but must be done before you start on the hormones.

Unfortunately, it is a postcode lottery - you can ask but you may not get. Where I live, the NHS trust will not provide tamoxifen or RT .... they will however, in extreme cases, fund breast reduction surgery afterwards.

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

User
Posted 26 May 2021 at 20:35

Hi Joe H

I learned more about side effects from this forum than anywhere else, and haven’t really had a conversation about this with the medics. The comments from LynEyre and Andy62 are a case in point of how invaluable personal experience is! I was initially put on daily Bicalutamide tablets with twice weekly Tamoxifen tablets to apparently reduce breast growth. However the oncologist I saw took me off those as there is a slight risk of clots etc, which I can’t risk due to my artery dissection. (Which is pretty much what Andy62 has said).

I’m taking the view that I’ll be on HT for ‘only’ 6 months and I’m hopefully young enough that I can ‘work it off’ through exercise in due course. Andy62 very interesting about fat tissue or bud growth, I will be keeping an eye and have lost a little weight, just a bit stubborn around my tummy. Now I’ve started HT I’m too late for RT to the breast (as LynEyre confirms) and am walking every day and avoiding the biscuit tin...

I’d just ask your consultant which HT he/she is considering and ask the side effects. Good luck 👍

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User
Posted 17 May 2021 at 13:32
Hi Damon, the HT will shrink the cancer and give you time to decide on which treatment option you want to opt for. Because of your artery problem the surgical risks are probably much higher. If surgery is ultimately your preference I would ask what the overall risks are even after your artery has healed. That way you can make a proper informed decision. Either treatment should have an excellent chance of success, ask your oncologist for a predicted success figure for EBRT or brachytherapy. Ask the surgeon for that too.

All the best.

Ido4

User
Posted 17 May 2021 at 18:19
Hi I started HT 4 months ago (Decapeptyl). I asked for monthly for the first 3 months to check if I could handle it. It’s been ok tbh and the Bicalutamide gave me worse side effects. I’ve now moved onto 3 monthly jab. I think monthly makes your body swing worse as the levels rise and fall. So essentially it took me 5 1/2 yrs to get to this stage. I too dreaded HT after the aftermath of recovering from surgery. But generally I’m ok physically and mentally and sex function wise. I guess I should be grateful .....

Good luck

If life gives you lemons , then make lemonade

User
Posted 17 May 2021 at 18:57

Thanks ChrisJ and Ido4, I’ve learned today that the monthly dose is lower than the three monthly one, which makes sense. I was on bicalutamide for about four weeks and there was a two week overlap after the first Zoladex injection, so I’m 6 weeks in. I’m feeling generally fine so far but think I am noticing some subtle bodily changes, might be my imagination! GP told me today that he’d had a letter advising that the vascular/neck artery department have cleared me for LDR seed Brachtherapy but with a spinal anaesthetic rather than general anaesthetic. I have a bit of needle phobia so shudder at the thought, but will not exclude that option because of that. I must admit I’m leaning more towards BT or RT, as I believe I could have either this summer, with the torn artery hopefully healing in the background. This means 6 months of HT, 6 months of artery recovery and BT/RT could all be done with by autumn, finishing at roughly the same time. I accept there will be side effects throughout autumn and into winter but would like to think the worst will be over around Christmas. My big worry is that I wait for the artery to heal before making a decision, and then it doesn’t - or takes a year. Decisions, decisions.....

User
Posted 18 May 2021 at 16:55

Glad to hear you are feeling generally fine, you will notice body changes with HT so that’s normal. Good luck deciding a way forward, keep us posted.

All the best. 

Ido4

User
Posted 20 May 2021 at 16:26

Saw oncologist today to further discuss treatment options. Actually ended up seeing one of her colleagues who was brilliant and spent over an hour with my wife and I, he’d had a surgery background and had moved over to radiotherapy so had been both sides of the coin (not sure if his surgery experience was with PCa). I’ve more or less discounted surgery due to the fact I can’t have it until my artery has healed and I can’t have a general anaesthetic - and possible side effects worry me. So BT or RT is the option and went to today’s appointment almost decided on BT...doctor was doing his best to be impartial of course! BT appeals as a ‘one day’ treatment, actual procedure would be done with spinal anaesthetic which is a bit scary. Slightly put off as I wouldn’t really know if it’s worked for some time, and there’s also possibility of additional RT top up. What’s thrown the spanner in the works is that the doctor has advised RT is very accurate and even in the last 5 years has progressed. Whilst side effects are of course there in any treatment I was more receptive to EBRT than before I went in which hasn’t helped my decision making process. Actually came out of the appointment a bit emotional as I’m absolutely terrified of making the wrong decision...

I also asked about SpaceOAR which has been mentioned on this forum from time to time. The doctor is aware of it of course and said it was likely available with BT and he would check if I could have it with EBRT. We agreed that we would speak next week so he could advise further about SpaceOAR (which would be a surgical department) and I could ponder further on my decision.

Edited by member 20 May 2021 at 16:34  | Reason: Typo

User
Posted 25 May 2021 at 19:27

Spoke to the same Doctor this evening who telephoned to advise SpaceOAR details, we have a ‘formal’ telephone appointment scheduled for Thursday. So SpaceOAR is done for Brachytherapy and would be done for EBRT too due to my age (52). But I’m not sure if it would have been offered I hadn’t asked for it, just so grateful I can have it, and on the NHS. I’d be grateful of any comments from anyone who’s had it. So I’ve pretty much decided on Brachytherapy and like everyone here have had to really weigh up the reasons for my choice - as mentioned on prior posts I’m worried about making the ‘wrong’ decision. My HT is monthly Zoladex injections for 6 months only, assuming I have treatment within that time. I definitely cannot have RARP within that timeframe due to the tear in the artery in my neck, and whilst that should heal within 6 months there’s no guarantee. I really don’t want to be on HT too long if I can avoid it so that leaves EBRT or Brachytherapy. I totally get EBRT is very accurate and I like the idea that they scan at least once a week and can change the plan accordingly if necessary, I’m lucky that I can have SpaceOAR too. But I think I prefer the idea of radioactive seeds spreading their radiation from the inside out, and with a SpaceOAR hopefully protecting my back passage I really hope everything surrounding the prostate will be spared too much radiation. If it has to be topped up with EBRT so be it. Really not looking forward to spinal anaesthesia but should be in and out in a day, and believe the SpaceOAR will be done on the day. Hopefully all of this can be done in July, I asked if I could squeeze in a holiday in June prior to the procedure and was met with a cheery response of ‘we work at your pace’. 
Thanks to all those that have taken the trouble to share their Brachytherapy stories and other treatments, it’s really, really helped. 

User
Posted 25 May 2021 at 20:07

Just wanted to update on my original reason for my first post and title of this thread. I’ve now had my second Zoladex implant/injection and I’m obviously only a little way in. So far I have had tingling in my breast tissue, not painful but I am aware of it and it comes and goes. I have also had a few hot flushes which last only a few minutes. I am also checking myself in the mirror most evenings to see if I have any breast development - I think I might have slightly but might be paranoid, and although I’ve lost a few pounds my tummy is refusing to decrease! On the whole I feel fine and happy enough, it could be much worse.

User
Posted 26 May 2021 at 12:11

Hi Damon C

I'm about to embark on the HT and EBRT - its been around 5 months since I was diagnosed.

My PSA was 18

I've had a bone scan about 4 months ago (was clear then)

Then Biopsy T2a  but gleason score was high risk 9 on one side 6 on the other

I opted for the RP, but surgeon asked for a PET scan which showed that it may have spread into Seminal Vesicle so suggestion was HT plus ERBT

I'm going to the hospital tomorrow to speak to the consultant and nurse re starting HT

I am concerned about the side effects - I understand you can have radiation treatment and/or medication to prevent gynaecomastia - do you know anything about this and have you considered this??

Have you any advice as to what I should ask etc?

User
Posted 26 May 2021 at 12:49
Research suggests that tamoxifen can prevent or at least minimise breast development if it is started early enough. Tamoxifen does have its own side effects though.

A couple of blasts of radiotherapy to the breast buds can prevent breast growth but must be done before you start on the hormones.

Unfortunately, it is a postcode lottery - you can ask but you may not get. Where I live, the NHS trust will not provide tamoxifen or RT .... they will however, in extreme cases, fund breast reduction surgery afterwards.

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

User
Posted 26 May 2021 at 14:52

It's worth understanding that there are two types of breast growth.

There's growth of the breast buds (which can also be sensitive/painful). This is the type of growth which Tamoxifen or radiotherapy blast to the breast buds can solve. Tamoxifen is about 70% effective, and radiotherapy blast to the breast buds about 50% effective.

There's also breast fat growth, and I don't think either of these will help with this. You have to watch your diet and avoid putting on weight.

Bicalutamide when used by itself tends to cause breast bud growth (although not in the 4 weeks of protection against testosterone flare), and the injectable hormone therapies tend to cause breast fat growth, but this can vary in people and both types of treatment can cause both side effects. Some oncologists will give Tamoxifen when starting Bicalutamide (again, not needed for just the 4 week dose). I was refused this when I asked, but given it the day I started feeling breast bud growth, and it not only stopped that, but reversed it too. It can only reverse recent breast gland growth, not anything that's been there a while.

You usually can't have Tamoxifen if you are thought to be at risk of DVT, or in the case of some heart conditions, or if you are on Estradiol patches on the PATCH trial. Some people may find their livers don't tolerate it either (although at the low doses used here, typically 2x20mg/week, that's rarely a problem).

User
Posted 26 May 2021 at 20:35

Hi Joe H

I learned more about side effects from this forum than anywhere else, and haven’t really had a conversation about this with the medics. The comments from LynEyre and Andy62 are a case in point of how invaluable personal experience is! I was initially put on daily Bicalutamide tablets with twice weekly Tamoxifen tablets to apparently reduce breast growth. However the oncologist I saw took me off those as there is a slight risk of clots etc, which I can’t risk due to my artery dissection. (Which is pretty much what Andy62 has said).

I’m taking the view that I’ll be on HT for ‘only’ 6 months and I’m hopefully young enough that I can ‘work it off’ through exercise in due course. Andy62 very interesting about fat tissue or bud growth, I will be keeping an eye and have lost a little weight, just a bit stubborn around my tummy. Now I’ve started HT I’m too late for RT to the breast (as LynEyre confirms) and am walking every day and avoiding the biscuit tin...

I’d just ask your consultant which HT he/she is considering and ask the side effects. Good luck 👍

 
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