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How long on hormone therapy before radiotherapy?

User
Posted 04 Aug 2014 at 07:50
Was just wondering how long is best to be on ht before starting rt? Does it make a difference to the chances of a successful outcome? I am due to start rt after 3 months ht.

Steve

User
Posted 10 Aug 2014 at 02:25
You are being hard on yourself. Despite what you have said to others about having gone beyond that stage you, like these friends of friends, are being offered radical treatment which means your medics believe you have a decent chance of a cure. They don't offer curative treatment to men unless they believe it has a reasonable chance of success.

I think many of us have struggled with the public perception of PCa. The worst thing is the number of people who say "oh, if you are going to get cancer then prostate cancer is the best one to get" ..... it used to drive me round the twist! But of course, I was dealing with it three-fold so probably a bit over-sensitive. And the times we heard "so & so had the treatment and he is fine now" I used to respond with "that's really good to hear. How does he cope with the dry orgasms?" Of course, people rarely talk about the real impact of diagnosis and treatment - in polite society the question how are you is not usually an invitation to discuss the gory details. In truth, even if you knew of people with PCa before your own diagnosis, how much did you know about the different treatments, ED, man boobs and all the other life-changing cr*p? And yet, any of your friends could say to someone in 6 or 12 months "aah, NikonSteve had that cancer and he's fine now" because they will assume you are.

Hoping tomorrow will be a better day for you :-)

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

User
Posted 10 Aug 2014 at 02:46
Might also be a good idea to try to hold on to the thought that being diagnosed at T3 probably had nothing to do with putting up with your weeing problems for too long. Many of those dx early will also have out up with nightly loo trips, delay, dribble or urgency for some time before they went to the doctor. If we ran a straw poll of members on here, symptoms & staging don't always go the way you would expect. Your cancer may just be lively - if you had gone to the GP as soon as you noticed things had changed, it might still have been a T3. Statistics tell us that the majority of diagnosed men could have all the symptoms, ignore them for 10 years and still be a T1 because they have the pussy-cat rather than the tiger. My husband was 50 with a PSA of 3.1 and no symptoms - in theory he should have been in the 'early' group but it had already invaded the bottom of his bladder and unsurprisingly, 2 years post-RP he needed salvage RT/HT. My dad had almost 13 years in remission but it has now returned. Father-in-law opted for no treatment and died with a PSA of less than 2 and mets to his liver, kidneys & lymphs.

T1 or T4 - it is so much more complicated than just whether you went to the doctor early enough. Perhaps next time, instead of telling someone you delayed visiting the GP just explain that there are 27 different kinds of PCa and yours must be one of the more aggressive types.

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

User
Posted 10 Aug 2014 at 09:29
Morning Steve.

Things definitely seem worse at night time.

We did not sleep for months after diagnosis.

Everything that Lyn has said I agree with, but there are bad days, as you describe.

Unless they have been through it themselves, people do not know what to say about cancer. We did not tell many people, as some days we don't want to be asked "how we are?".

Those posters do not sound very helpful though!

We look at photos now, taken before dx and say "must have had it then and had no idea". Like you the night time weeing started ages ago - but we put it down to a weak bladder, normal ageing or too much wine that evening!

We too question why we did not go sooner for checks, but in our case I was having IVF so if we had found my OHs cancer earlier, we would not have had our now 2 year old boy. Its quite a consideration. So when we feel bad - we remember that.

We do focus and hope we are going to get a cure, and take strength that we are in that camp. As discussed before the 50/50 chance was mentioned to us by the onco.

In terms of work, we ran a large business with 100 staff and motivating ourselves was difficult. For us with the 2 children (it was a hotel so 24 hours evenings/weekends included!) we were lucky and had a good offer to sell, so we did. My OH misses the work and needs something else to focus on (the 2 children for now) so we moved away and starting the fresh life that we had dreamt about, but this will not suit everyone!

I know it must be difficult for you to focus now on photographing other peoples weddings etc, when they seem unimportant, but you will feel better and focused in time. We were in your position in late 2011 and just decided to start living life more for the day and doing the things we wanted to do.

I hope that I haven't spoken too much about myself here, I don't usually, but hope that it can help you.

As dx is so similar, interesting to chat to you, and if we can help each other all the better!

And as for these people with their comments about so-and-so who is better now....I have found that others know very little about this disease (even some medical professionals not in the field)...and they are best ignored. Others just want to know that people are fine now...so they don't have to think about it any more. Unfortunately this will never be an option for us.

But on the other hand, any of could be run over by a bus tomorrow.

Have a better day.

Alison x

User
Posted 13 Aug 2014 at 15:13

Hi Steve

Radio Therapy underway by Henry Sharpe

 

Try reading this thread should give you loads of info

 

Barry

User
Posted 13 Aug 2014 at 21:09

Dear Steve

I think that you are both still in shock from the diagnosis. I would like to say that these sorts of feelings go away, but they don't - however, things do get better and more bearable.

You are still at a difficult point of the process, awaiting RT and all that entails, wondering how it will go and if it will work.

I understand and agree with everything that you say in your last post, as we have felt exactly the same.

Isn't it sod's law that your wife's operation has come up at this difficult time? I was in a similar situation under different circumstances (C section planned) and I myself worried that something awful may happen to me whilst under anaesthetic. I think that this crosses most peoples minds who are having an op, especially with your wifes previous sad experience. It is natural, she is probably feeling vulnerable at the moment and so worried for you that she has given up on herself!! I am sure that she will feel better once her op is out of the way. It will be a difficult few weeks with mobility issues, lots of appointments for you both and no doubt a busy wedding season to juggle with too.

I think your fitness regime will really help with the weight maintenance and any inklings of depression that you may be feeling. Make the most of the good weather whilst it lasts!

I know what you mean about Robin Williams. What a sad story about all the depression/addictions that he was battling. I must admit that now whenever a middle aged man passes away I look to see if it was Ca related, and if it was PCa it really upsets me. It just shows that we never really know what is going on in other peoples lives. He didn't have Cancer and he died of something completely different.

Emotions are certainly running high though for all of us suffering this disease. No-one else can really understand and we cant expect them to really.

One thing that it does do though is put things in perspective and highlight what is really important in life. Things we used to really stress about seem so unimportant now and we wasted so much time worrying about them!

As for your Oncos letter, a G7 is classed as medium risk generally I think but they all seem to have their own view on it. It is important to find a positive onco and believe what he/she says!!

I know that we too hang on every word that the medical professionals say afterall our trust is in them. 

Always a good idea to have a clear out I find and makes you feel better afterwards! (perhaps this is a woman thing as my hubbie is a real hoarder). Material items just don't mean the same now. What is important is time with friends and family at every opportunity.

We have just arrived in Mallorca now for a 2 week break. Was a stressful journey but hoping for a relaxing 2 weeks! We did not have any hols (or feel like them) until well after the RT finished as our hearts were not in it, hence this reply is a bit disjointed as I am trying to do it between other jobs!

I wish you all the best for your wifes op next week and hope you are feeling a little better. Could ramble on for hours but got a 2 year old to settle!!

Take care

Alison

 

 

Edited by member 13 Aug 2014 at 21:30  | Reason: Not specified

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User
Posted 04 Aug 2014 at 11:10
Hello Steve,

You've more or less answered your own question... Its normally 3 months before the start the RT as they want the prostate to shrink.

Best of luck

David

User
Posted 04 Aug 2014 at 12:16
Some oncologists now believe that the longer you have HT before RT the more damage the RT is able to do. It isn't just about shrinking the prostate; the hormones weaken the cancer cells by starving them so they are more susceptible to the zapping when it comes. So there are men on this forum that have had 6 months or more as part of a trial perhaps. Standard practice is still 3 months though and I think a lot of men feel they just want to get on with what feels like the 'real' treatment.

There are also big variations in how long HT is given after the RT. Anything from 6 months to 3 years seems to be used. We also have at least one member I can think of who has had RT without any HT.

Edited by member 04 Aug 2014 at 12:20  | Reason: Not specified

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

User
Posted 05 Aug 2014 at 10:15
We had 6 months HT prior to RT as we were on the Stampede trial.

Then we had the 37 sessions on an IMRT machine.

Not wishing to complicate matters, but my understanding at the time was that there were different types of RT machine and they are not always available to everyone.

We were advised that the IMRT machine was the latest, best one as it delivered differing amounts of RT to different areas, as needed.

Something to bear in mind and look into with your team.

Best wishes

Alison

User
Posted 05 Aug 2014 at 12:56

Originally Posted by: Online Community Member
We had 6 months HT prior to RT as we were on the Stampede trial.

Then we had the 37 sessions on an IMRT machine.

Not wishing to complicate matters, but my understanding at the time was that there were different types of RT machine and they are not always available to everyone.

We were advised that the IMRT machine was the latest, best one as it delivered differing amounts of RT to different areas, as needed.

Something to bear in mind and look into with your team.

Best wishes

Alison



Hi Alison,



Thanks for the message.



I believe that my RT with
be carried out on a IMRT machine so maybe I shouldn't be concerned that I will
only be having four weeks treatment.



Keep in touch.



Steve



 

User
Posted 05 Aug 2014 at 18:24
You never responded to the question about the 4 weeks but if you are down for the short course then in my view you should feel very fortunate. For many years it was believed that 2Gy was the highest dose a man could safely be given, the newer research is showing that fit men with no pre-existing urinary problems can handle the higher dose without the side effects becoming too much to handle. More than this, the data suggests that the long term outcomes are better for men on the short route than for those attending 37 sessions, and that a dose at 3Gy does nearly as much damage as 2 lots of 2Gy. This is why men on the 4 week programme don't need the extra days, the higher dose at each visit delivers the same amount of cancer killing rays over the whole period.

At least, that's how it was explained to us when John took part in the trial. He sailed through and never missed a day's work or his daily gym routine so it was the right option for him.

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

User
Posted 05 Aug 2014 at 22:39

Originally Posted by: Online Community Member
You never responded to the question about the 4 weeks but if you are down for the short course then in my view you should feel very fortunate. For many years it was believed that 2Gy was the highest dose a man could safely be given, the newer research is showing that fit men with no pre-existing urinary problems can handle the higher dose without the side effects becoming too much to handle. More than this, the data suggests that the long term outcomes are better for men on the short route than for those attending 37 sessions, and that a dose at 3Gy does nearly as much damage as 2 lots of 2Gy. This is why men on the 4 week programme don't need the extra days, the higher dose at each visit delivers the same amount of cancer killing rays over the whole period.

At least, that's how it was explained to us when John took part in the trial. He sailed through and never missed a day's work or his daily gym routine so it was the right option for him.

 

Thanks Lyn, you've made me feel better about my 4 week treatment.

I'm just nervous about the idea that what happens during that period of 4 weeks is so important to the rest of my life. I think it's because my confidence has been shattered by the diagnosis and not certain of anything anymore.

I appreciate your kindness in the messages you post and for the useful information you have given me.

Steve

User
Posted 08 Aug 2014 at 09:38
Glad you are all clear on the RT machine. So much information to take in at a difficult time - it can be mind blowing and exhausting.

I know what you mean amount shattering confidence Steve, that has been a big change for us too. It seems to affect all aspects of your life. Where as before I was really decisive, I worry about the consequences of my decisions more now.

I also find it difficult trusting other people and my OH was checking the treatment matters all the time, even questioning the Medical professionals. So far as asking "is this the IMRT machine" when he was on it.

Glad that you are moving forward with your treatment.

Best wishes to yourself and your wife.

Alison x

User
Posted 10 Aug 2014 at 01:15

Hi Alison,

 

Thanks for your message.  You understand just how I feel.  I not only have lost my confidence but also my motivation, not a good thing when you're self-employed.

 

Probably not a good day to write this.  The day started with someone tweeting some Prostate Cancer UK posters to me.  One poster really got to me, I don't know if you've seen it, it's the "Did you know women suffer from prostate cancer too?" one.  It's very powerful in getting the message out there but it made me really sad, reminding me how much my wife and family were suffering.  My hormone therapy probably made it worst, I have been really emotional recently.  I just feel so sad and guilty that I took no notice of my pee problem for so long until it made my cancer much harder to treat.  Everyone who I seem to meet who finds out I have PC keeps telling me not to worry, that's the cancer that's easy to treat and "so and so" who they know were cured by having their prostate removed.  When I ask them for more details, they all say that the person they know were treated when the cancer was at an early stage.  When I tell them that mine has gone beyond that stage they want to know why I didn't get it checked earlier.  I feel like telling them that it was because I was stupid.  Doesn't make me feel any better.

 

Sorry, I really shouldn't reply to messages when I feel like this.  It's late and I'm probably just tired.

 

I do appreciate you taking the time to write messages to me.  Keep in touch.  I'll feel better tomorrow.

 

Steve

Edited by member 06 Sep 2014 at 23:24  | Reason: Not specified

User
Posted 10 Aug 2014 at 02:25
You are being hard on yourself. Despite what you have said to others about having gone beyond that stage you, like these friends of friends, are being offered radical treatment which means your medics believe you have a decent chance of a cure. They don't offer curative treatment to men unless they believe it has a reasonable chance of success.

I think many of us have struggled with the public perception of PCa. The worst thing is the number of people who say "oh, if you are going to get cancer then prostate cancer is the best one to get" ..... it used to drive me round the twist! But of course, I was dealing with it three-fold so probably a bit over-sensitive. And the times we heard "so & so had the treatment and he is fine now" I used to respond with "that's really good to hear. How does he cope with the dry orgasms?" Of course, people rarely talk about the real impact of diagnosis and treatment - in polite society the question how are you is not usually an invitation to discuss the gory details. In truth, even if you knew of people with PCa before your own diagnosis, how much did you know about the different treatments, ED, man boobs and all the other life-changing cr*p? And yet, any of your friends could say to someone in 6 or 12 months "aah, NikonSteve had that cancer and he's fine now" because they will assume you are.

Hoping tomorrow will be a better day for you :-)

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

User
Posted 10 Aug 2014 at 02:46
Might also be a good idea to try to hold on to the thought that being diagnosed at T3 probably had nothing to do with putting up with your weeing problems for too long. Many of those dx early will also have out up with nightly loo trips, delay, dribble or urgency for some time before they went to the doctor. If we ran a straw poll of members on here, symptoms & staging don't always go the way you would expect. Your cancer may just be lively - if you had gone to the GP as soon as you noticed things had changed, it might still have been a T3. Statistics tell us that the majority of diagnosed men could have all the symptoms, ignore them for 10 years and still be a T1 because they have the pussy-cat rather than the tiger. My husband was 50 with a PSA of 3.1 and no symptoms - in theory he should have been in the 'early' group but it had already invaded the bottom of his bladder and unsurprisingly, 2 years post-RP he needed salvage RT/HT. My dad had almost 13 years in remission but it has now returned. Father-in-law opted for no treatment and died with a PSA of less than 2 and mets to his liver, kidneys & lymphs.

T1 or T4 - it is so much more complicated than just whether you went to the doctor early enough. Perhaps next time, instead of telling someone you delayed visiting the GP just explain that there are 27 different kinds of PCa and yours must be one of the more aggressive types.

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

User
Posted 10 Aug 2014 at 07:55
Thanks, Lyn.

Steve

User
Posted 10 Aug 2014 at 09:29
Morning Steve.

Things definitely seem worse at night time.

We did not sleep for months after diagnosis.

Everything that Lyn has said I agree with, but there are bad days, as you describe.

Unless they have been through it themselves, people do not know what to say about cancer. We did not tell many people, as some days we don't want to be asked "how we are?".

Those posters do not sound very helpful though!

We look at photos now, taken before dx and say "must have had it then and had no idea". Like you the night time weeing started ages ago - but we put it down to a weak bladder, normal ageing or too much wine that evening!

We too question why we did not go sooner for checks, but in our case I was having IVF so if we had found my OHs cancer earlier, we would not have had our now 2 year old boy. Its quite a consideration. So when we feel bad - we remember that.

We do focus and hope we are going to get a cure, and take strength that we are in that camp. As discussed before the 50/50 chance was mentioned to us by the onco.

In terms of work, we ran a large business with 100 staff and motivating ourselves was difficult. For us with the 2 children (it was a hotel so 24 hours evenings/weekends included!) we were lucky and had a good offer to sell, so we did. My OH misses the work and needs something else to focus on (the 2 children for now) so we moved away and starting the fresh life that we had dreamt about, but this will not suit everyone!

I know it must be difficult for you to focus now on photographing other peoples weddings etc, when they seem unimportant, but you will feel better and focused in time. We were in your position in late 2011 and just decided to start living life more for the day and doing the things we wanted to do.

I hope that I haven't spoken too much about myself here, I don't usually, but hope that it can help you.

As dx is so similar, interesting to chat to you, and if we can help each other all the better!

And as for these people with their comments about so-and-so who is better now....I have found that others know very little about this disease (even some medical professionals not in the field)...and they are best ignored. Others just want to know that people are fine now...so they don't have to think about it any more. Unfortunately this will never be an option for us.

But on the other hand, any of could be run over by a bus tomorrow.

Have a better day.

Alison x

User
Posted 10 Aug 2014 at 10:38
Thanks Alison,

You messages really help. Have to brave the rain to go and work now but I will post a longer reply tomorrow.

Steve

User
Posted 13 Aug 2014 at 15:13

Hi Steve

Radio Therapy underway by Henry Sharpe

 

Try reading this thread should give you loads of info

 

Barry

User
Posted 13 Aug 2014 at 21:09

Dear Steve

I think that you are both still in shock from the diagnosis. I would like to say that these sorts of feelings go away, but they don't - however, things do get better and more bearable.

You are still at a difficult point of the process, awaiting RT and all that entails, wondering how it will go and if it will work.

I understand and agree with everything that you say in your last post, as we have felt exactly the same.

Isn't it sod's law that your wife's operation has come up at this difficult time? I was in a similar situation under different circumstances (C section planned) and I myself worried that something awful may happen to me whilst under anaesthetic. I think that this crosses most peoples minds who are having an op, especially with your wifes previous sad experience. It is natural, she is probably feeling vulnerable at the moment and so worried for you that she has given up on herself!! I am sure that she will feel better once her op is out of the way. It will be a difficult few weeks with mobility issues, lots of appointments for you both and no doubt a busy wedding season to juggle with too.

I think your fitness regime will really help with the weight maintenance and any inklings of depression that you may be feeling. Make the most of the good weather whilst it lasts!

I know what you mean about Robin Williams. What a sad story about all the depression/addictions that he was battling. I must admit that now whenever a middle aged man passes away I look to see if it was Ca related, and if it was PCa it really upsets me. It just shows that we never really know what is going on in other peoples lives. He didn't have Cancer and he died of something completely different.

Emotions are certainly running high though for all of us suffering this disease. No-one else can really understand and we cant expect them to really.

One thing that it does do though is put things in perspective and highlight what is really important in life. Things we used to really stress about seem so unimportant now and we wasted so much time worrying about them!

As for your Oncos letter, a G7 is classed as medium risk generally I think but they all seem to have their own view on it. It is important to find a positive onco and believe what he/she says!!

I know that we too hang on every word that the medical professionals say afterall our trust is in them. 

Always a good idea to have a clear out I find and makes you feel better afterwards! (perhaps this is a woman thing as my hubbie is a real hoarder). Material items just don't mean the same now. What is important is time with friends and family at every opportunity.

We have just arrived in Mallorca now for a 2 week break. Was a stressful journey but hoping for a relaxing 2 weeks! We did not have any hols (or feel like them) until well after the RT finished as our hearts were not in it, hence this reply is a bit disjointed as I am trying to do it between other jobs!

I wish you all the best for your wifes op next week and hope you are feeling a little better. Could ramble on for hours but got a 2 year old to settle!!

Take care

Alison

 

 

Edited by member 13 Aug 2014 at 21:30  | Reason: Not specified

User
Posted 16 Aug 2014 at 01:50

Hi Alison,

 

Thanks for your reply.  I'm amazed you have the time when you're trying to cope with a two year old.  I'm really grateful you do though, it helps me.

 

Hope you all have a wonderful holiday, you certainly wouldn't be missing the weather here at the moment.

 

I had a bit of good news today, it gave me a real boost, but I have put the details under a new post "Hormone Treatment Really Works".

 

Keep in touch.

 

Steve

User
Posted 02 Sep 2014 at 14:17

Hi Steve

With your diagnosis the research suggests 6 months prior to R/T also 2 years post R/T. I was Gleason 3+4 and PSA 21 and had 8months HT, IMRT (37 x 2) followed by 29 months HT. The consultant has taken me off HT now.

It all depends on the individual I guess and my philosophy is that my PCa was caught in time and therefore give it one huge go at eradicating it. The HT serves to shrink the tumour prior to radiotherapy and it also weakens the PCa cells. A weakened cell is more susceptible to eradication. After radiotherapy there could be some PCa cells left and these will be seriously wounded...and continued HT starves them and weakens them further so as to eradicate them rather than give them chance to hang around.

 

 

 
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