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User
Posted 14 Jun 2015 at 14:01
Hi all, I am new to this site. My husband has recently been diagnosed. We were initially told he was Gleeson 3+4 and cancer was localised T2a. His PSA is 7. 4, he is 63. We were shocked but just coming to terms with this when nurse rang after multi disciplinary meeting and informed cancer was bigger than initially thought and more aggressive 4+3, so still Gleeson 7. he was sent for a bone scan on Friday , which nurse said was precautionary and that there was no indication of spread. However We are devastated, husband has already had MRI , surely this would show if it was contained. I am trying to stay strong for my husband but worried sick. Has anyone been in a similar position and cancer was still contained?

Thanks for listening x

User
Posted 18 Jun 2015 at 20:34
Hi poppy

My husband age 58 was diagnosed last October with Gleason 7 psa 9.2, and contained. He had to have both an mri and a bone scan before treatment was discussed.

He had his surgery in December, and the surgeon was happy it was contained, although his Gleason score was upgraded to 9.

I have recently been where you are now. If you'd like to talk, please feel free to message me. In the meantime, I would suggest that you read posts on this forum and literature from the charity, but nothing else. You can go mad reading everything out there, and there's a lot of contradictory stuff. If you have questions, someone on here will know the answer

Good luck for your appointment. I hope the news is as good as it can be.

Louise

User
Posted 14 Jun 2015 at 14:01
Hi all, I am new to this site. My husband has recently been diagnosed. We were initially told he was Gleeson 3+4 and cancer was localised T2a. His PSA is 7. 4, he is 63. We were shocked but just coming to terms with this when nurse rang after multi disciplinary meeting and informed cancer was bigger than initially thought and more aggressive 4+3, so still Gleeson 7. he was sent for a bone scan on Friday , which nurse said was precautionary and that there was no indication of spread. However We are devastated, husband has already had MRI , surely this would show if it was contained. I am trying to stay strong for my husband but worried sick. Has anyone been in a similar position and cancer was still contained?

Thanks for listening x

User
Posted 14 Jun 2015 at 21:53
Hello Poppy

I can't particularly answer your question though I think a belt and braces approach helps the diagnostician, we have been told that the MRI doesn't always show everything but a bone scan certainly would show up areas of possible concern (they say "take up" as the bone takes up the material in the injection at sites where bone activity has been going on, either growth or loss of bone. The bone scan shows if there are hot spots but not all would be tumours, some can be damage from past injuries.

Anyway I simply wanted to say hello, everyone here knows how you feel. Please let us know what the bone scan shows, here's hoping it's clear.

With best wishes

Allison xxx

User
Posted 14 Jun 2015 at 22:10

Hi poppy , sorry for the diagnosis ! It can take MRI,s and CT scans et al before they are sure. Mine was only really found through 3rd biopsy and CT scan. I had a bone scan which showed a hot-spot but they put it down to prior injury. My brother is a consultant radiologist and MRI's whilst useful are still hard to interpret precisely. My journey has been going on for nearly a year and operation tomorrow, but it is still contained they say , even though my Gleason is 8 and psa 43.
All the help and advice you could ever need is here
Chris

User
Posted 14 Jun 2015 at 22:27

Hi Poppy

At G7 and PSA less than 10 suggests bone scan is a precaution. I was G8 with a PSA of 6 going on 9 with clear bone scan at aged 58 - check my profile. By the way that was 10 plus years ago.

Good luck

Ray

Edited by member 14 Jun 2015 at 22:30  | Reason: Not specified

User
Posted 14 Jun 2015 at 22:39

Hi

The bone scan is a belt and braces approach. Hopefully it will be clear. Once they have all the results they will need to discuss treatment options.

It may help to download the toolkit from the PCUK website. This will give you lots of info about the various treatments etc. In all liklihood if all the scans are clear and suggest the cancer is contained you will see a urologist who will discuss surgery as an option and an oncologist who may discuss radiotherapy as an option. The toolkit will also inform you of other available treatments and possible side effects of the treatment.

If you click on my profile you will see I had surgery followed by RT.

You will be going through the worst time now ie waiting for all the results. If there are treatment options you will need to decide which treatment path you wish to take. This is why you need to research the treatment options so you can ask questions of the medics.

Once you know what is happening things will feel much clearer.

Please ask any questions

Bri

User
Posted 14 Jun 2015 at 23:08
Hi Poppy

My hubby is 4+3, T3a & PSA 19:7 (although the hospital's blood test scored 17:21) he had his first hormone injection a couple of weeks ago. With a T2 your hubby will probably be given a couple of treatment options so make sure you read up on everything so he can decide what his priorities are.

If you click on my profile you will be able to see my hubby's history, Bri is right the Toolkit is a great resource and if you have any questions do phone the PCUK specialist nurses.

Wishing you well with your journey.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 14 Jun 2015 at 23:13

Poppy,
it is understandable to be concerned when it feels the ground is shifting under your feet but if the nurse said it appears to be contained, then the MRI must have suggested that it was well within the gland. Some hospitals don't even offer bone scans at PSA of less than 10 so just be happy that your hospital offers the opportunity to have your mind put at rest.

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

User
Posted 15 Jun 2015 at 09:32

Hello Poppy and welcome from me too.

As others have said this is a tremendously scary time, the not knowing etc.

Once you have all your results and you can start making plans it will get a little easier in some respects. You will at least know just what you are dealing with.

As has been said, the Toolkit from the site is excellent. Having read through it you can make notes on questions to ask when you see the consultant.
Make sure you write those questions down because you are bound to forget some of them due to nervousness.
Take a notebook and pen or ask if you can record the conversation for later.
I guarantee you will not remember all that is said, even though there will be two of you.
You may even hear the comments differently and put a different interpretation on them so a record of some sort helps.

Easier said than done but try not to panic at this stage.

There are many treatments available now.
There are a few men on here who know they are terminal and can only have their cancer kept at bay.
Some have lived many years like this and lead pretty full and active lives so even if the prognosis is worse than you want there is still hope. Treatments options seem to progress very quickly with Prostate cancer, there're new ones or combinations appearing all the time.
We were able to opt for permanent seed Brachytherapy. Treatment still a baby as far as it's use is concerned (I think about 10 years) compared to other treatments, but being recognised more and more.

By being proactive in researching the cancer it will help you both make informed decisions when the time comes. At the very least research will give you questions to ask for reassurance.

Don't be tempted to browse the web though. Not everything is relevant and some of it may sound scary so best leave browsing to UK recognised sites like this one, Cancer Research etc.

Ask any questions you like. I know you will get answers.

Best Wishes to both of you. We are all here and know how you feel, exactly how you feel.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 Jun 2015 at 09:36
Hi Poppy,

You will find a lot of help and support on this site, I certainly have. There are people here with a lot of knowledge combined with wisdom (and wit!) who will offer positive answers for you. I find I read all postings as there is always something somewhere that can be helpful.

Have a look a my profile, hopefully it will encourage you with what can be done for your OH.

Arthur

User
Posted 16 Jun 2015 at 14:54

It is rare for results to be given over the phone so don't assume the worst. Please don't read anything sinister in that.
Friday will come quickly enough, but the waiting around is horrible isn't it?
There are loads and loads of positive stories on here but remember also that there are many people, for whom everything went as expected, and who don't feel the need to join a site like this. We don't therefore get to hear their stories.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 17 Jun 2015 at 13:08
Poppy

hi from me, I have only just been able to respond to your original post as I have been unable to access the forum for a couple of days. It is great to see everyone has given you as much reassurance and information as they can. My post is really just to introduce myself so Hi there I am Mo and I have been exactly where you are at the moment. It is without doubt a nail biting, nerve racking almost sick inducing anxiety so I feel for you. As Lyn and others have said the bone scan looks to have been done as a reassurance thing especially if your husband has another significant illness to contend with.

I have heard of results for other tests being given over the phone in exceptional circustances but consultants do not like doing that, they like to be able to discuss what they can see (or not see hopefully) from my experience they actually wanted to show us what Mick's scans looked like against a normal scan and against his MRI.

I am hoping that your consultant radiologist wants to show you the scan to reassure you that all is well, of course they may also want to point out something that might be nothing to do with PCa and discuss that. I have heard of them picking up some arthritic damage that would benefit from treatment and even in one case a hairline hip fracture which had gone undiagnosed albeit with significant pain and discomfort for months.

I will be thinking of you and wishing you all the very best for Friday and beyond.

xx

Mo

User
Posted 19 Jun 2015 at 16:07

Hi all, good news from consultant , cancer contained in prostate, remains Gleason 7. Hubby has commenced hormone treatment today and will start radiotherapy shortly. Hormone treatment will be for 3 years and side effects are worrying but feel like we have won the lottery x

User
Posted 19 Jun 2015 at 16:11
That's so good to hear. What a weight off your mind. Hopefully the side effects, if any, will be minimal. You can move forward now.

All the best, Arthur

User
Posted 26 Sep 2015 at 01:32

Hi Poppy,

Unfortunately the side effects of hormone therapy can affect your life quite badly. 

I feel so tired that I feel like I'm ready to go to bed after only being awake for a couple of hours.  Hot flushes, which did disappear but have returned.  An active sex life which disappeared several days after starting HT.  Weight gain.  Muscle weakness.  Lack of concentration and forgetfulness and in my case, a heart attack (though my GP says I would have had one at some point, it may have been hastened by my cancer treatment).

Having said that, I'm pleased that I have a chance that I may be cured.

May I wish your husband the very best of luck in his treatment.

Steve

User
Posted 26 Sep 2015 at 10:20
Hello Poppy

Is your oh in the middle of his RT at the moment? If he is, this can add extra stress and side affects to the situation as it can do beforehand, as you are both bound to be thinking about it starting and how you will cope with the upcoming appointments etc.

These first few months are really difficult as the shock is sinking in and it is still very upsetting and raw. This may be making you both feel a bit low and lethargic.

Hang in there, your OH will find ways of coping with the side effects whether it be an afternoon nap, a change in bedcovers to assist with hot flushes. Some people find that gentle exercise like brisk walks help.

Lots of things to try.

He is lucky to have a lovely wife like you.

Alison x

User
Posted 26 Sep 2015 at 12:00

Hello Poppy,

Sorry your husband is finding it tough going.

It's a very difficult time for both of you I know. All we can do as wives and partners is to be there and be as supportive as we can, and I'm sure you are already doing that.

My own daughter used those very words to us when we told her, and she had already had her own cancer and her son's cancer to deal with. I suppose compared to theirs for her dad, at least, he was lucky to get such a low grade as it is.

It still grated a bit though so I do understand how upsetting it is. It seems to be a bit of an automatic saying that has sprung up, like the nurses telling you many men die WITH it rather than OF it. Very helpful that when you've just been diagnosed. The amount of friends and neighbours who said it too, grrrrrrhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

I think it must be an automatic reaction, perhaps because it comes as such a shock when you tell people, especially when you are relatively young and they don't know how to deal with the knowledge so think they are being reassuring.


However, no man, no matter how "simple" his version of PC is will get away with no post treatment symptoms at all and you feel like shouting at them - you don't know what you're talking about !! Well I did anyway

Thinking of you and hoping the side effects lessen.

 

Edited by member 26 Sep 2015 at 12:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 14 Jun 2015 at 21:53
Hello Poppy

I can't particularly answer your question though I think a belt and braces approach helps the diagnostician, we have been told that the MRI doesn't always show everything but a bone scan certainly would show up areas of possible concern (they say "take up" as the bone takes up the material in the injection at sites where bone activity has been going on, either growth or loss of bone. The bone scan shows if there are hot spots but not all would be tumours, some can be damage from past injuries.

Anyway I simply wanted to say hello, everyone here knows how you feel. Please let us know what the bone scan shows, here's hoping it's clear.

With best wishes

Allison xxx

User
Posted 14 Jun 2015 at 22:10

Hi poppy , sorry for the diagnosis ! It can take MRI,s and CT scans et al before they are sure. Mine was only really found through 3rd biopsy and CT scan. I had a bone scan which showed a hot-spot but they put it down to prior injury. My brother is a consultant radiologist and MRI's whilst useful are still hard to interpret precisely. My journey has been going on for nearly a year and operation tomorrow, but it is still contained they say , even though my Gleason is 8 and psa 43.
All the help and advice you could ever need is here
Chris

User
Posted 14 Jun 2015 at 22:27

Hi Poppy

At G7 and PSA less than 10 suggests bone scan is a precaution. I was G8 with a PSA of 6 going on 9 with clear bone scan at aged 58 - check my profile. By the way that was 10 plus years ago.

Good luck

Ray

Edited by member 14 Jun 2015 at 22:30  | Reason: Not specified

User
Posted 14 Jun 2015 at 22:39

Hi

The bone scan is a belt and braces approach. Hopefully it will be clear. Once they have all the results they will need to discuss treatment options.

It may help to download the toolkit from the PCUK website. This will give you lots of info about the various treatments etc. In all liklihood if all the scans are clear and suggest the cancer is contained you will see a urologist who will discuss surgery as an option and an oncologist who may discuss radiotherapy as an option. The toolkit will also inform you of other available treatments and possible side effects of the treatment.

If you click on my profile you will see I had surgery followed by RT.

You will be going through the worst time now ie waiting for all the results. If there are treatment options you will need to decide which treatment path you wish to take. This is why you need to research the treatment options so you can ask questions of the medics.

Once you know what is happening things will feel much clearer.

Please ask any questions

Bri

User
Posted 14 Jun 2015 at 23:08
Hi Poppy

My hubby is 4+3, T3a & PSA 19:7 (although the hospital's blood test scored 17:21) he had his first hormone injection a couple of weeks ago. With a T2 your hubby will probably be given a couple of treatment options so make sure you read up on everything so he can decide what his priorities are.

If you click on my profile you will be able to see my hubby's history, Bri is right the Toolkit is a great resource and if you have any questions do phone the PCUK specialist nurses.

Wishing you well with your journey.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 14 Jun 2015 at 23:13

Poppy,
it is understandable to be concerned when it feels the ground is shifting under your feet but if the nurse said it appears to be contained, then the MRI must have suggested that it was well within the gland. Some hospitals don't even offer bone scans at PSA of less than 10 so just be happy that your hospital offers the opportunity to have your mind put at rest.

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

User
Posted 15 Jun 2015 at 09:32

Hello Poppy and welcome from me too.

As others have said this is a tremendously scary time, the not knowing etc.

Once you have all your results and you can start making plans it will get a little easier in some respects. You will at least know just what you are dealing with.

As has been said, the Toolkit from the site is excellent. Having read through it you can make notes on questions to ask when you see the consultant.
Make sure you write those questions down because you are bound to forget some of them due to nervousness.
Take a notebook and pen or ask if you can record the conversation for later.
I guarantee you will not remember all that is said, even though there will be two of you.
You may even hear the comments differently and put a different interpretation on them so a record of some sort helps.

Easier said than done but try not to panic at this stage.

There are many treatments available now.
There are a few men on here who know they are terminal and can only have their cancer kept at bay.
Some have lived many years like this and lead pretty full and active lives so even if the prognosis is worse than you want there is still hope. Treatments options seem to progress very quickly with Prostate cancer, there're new ones or combinations appearing all the time.
We were able to opt for permanent seed Brachytherapy. Treatment still a baby as far as it's use is concerned (I think about 10 years) compared to other treatments, but being recognised more and more.

By being proactive in researching the cancer it will help you both make informed decisions when the time comes. At the very least research will give you questions to ask for reassurance.

Don't be tempted to browse the web though. Not everything is relevant and some of it may sound scary so best leave browsing to UK recognised sites like this one, Cancer Research etc.

Ask any questions you like. I know you will get answers.

Best Wishes to both of you. We are all here and know how you feel, exactly how you feel.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 Jun 2015 at 09:36
Hi Poppy,

You will find a lot of help and support on this site, I certainly have. There are people here with a lot of knowledge combined with wisdom (and wit!) who will offer positive answers for you. I find I read all postings as there is always something somewhere that can be helpful.

Have a look a my profile, hopefully it will encourage you with what can be done for your OH.

Arthur

User
Posted 15 Jun 2015 at 14:32
Thanks all , it is just so scary and my Husband seems to be coping better than me at moment. He has an appt with the consultant radiographer on Friday so hopefully bone scan results will be back then. He has only been offered radiotherapy and hormone treatment .... Which really worried me but nurse said this may be to do with him having MS... Which is currently dormant. Will keep you updated and thanks again x
User
Posted 16 Jun 2015 at 13:04

Hi Poppy I would ask why your husband is only being offered RT & HT , I was 3+4 and psa 5.7 and was offered RP or RT I went for RP as i wanted the option to have RT after if margins where found or if pc returned . they told me that RP after RT was not done at this hospital so do ask . Andy

User
Posted 16 Jun 2015 at 13:42

Hi Poppy,

I was MRI'd from hips to lower spine as a precaution. Took ages. All clear.

Just to add to the Gleason data, I was 3 + 4 = 7, T2, upgraded to T3a after pathology. But no positive margins following surgery.

26 months later, my PSA readings are 0.1 normal, latest was 2 weeks ago. Life is good.

Natural to worry, but does not look so bad when you see how many of us had similar stats.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 16 Jun 2015 at 14:09

Thanks, bone scan results are in but have given him an appt....won't give them over phone .... So worried sick....is this normal. He has appt to see consultant radiographer on Friday. We will ask about RP. Fingers crossed all will be well... I feel sick with worry all the time so it is good to hear positive stories x

User
Posted 16 Jun 2015 at 14:54

It is rare for results to be given over the phone so don't assume the worst. Please don't read anything sinister in that.
Friday will come quickly enough, but the waiting around is horrible isn't it?
There are loads and loads of positive stories on here but remember also that there are many people, for whom everything went as expected, and who don't feel the need to join a site like this. We don't therefore get to hear their stories.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2015 at 21:13

Originally Posted by: Online Community Member

Thanks, bone scan results are in but have given him an appt....won't give them over phone .... So worried sick....is this normal. He has appt to see consultant radiographer on Friday. We will ask about RP. Fingers crossed all will be well... I feel sick with worry all the time so it is good to hear positive stories x

Totally normal.  Only ever heard of one case where they gave a result on the phone to a patient and that was here recently, and that was out order.

Easy to say once you are through and beyond that stage, but there really is no point worrying so much about tomorrow that you forget to enjoy today.  Just look at all the positive stats and stories here.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 17 Jun 2015 at 05:18

hi poppy

looks like hubby is being well looked after, my diagnosis was only a few months ago and the waiting for results is tough and the anxiety of not knowing what may come next, just do what you feel like have a weep when you want sod anyone else, your friends and family will offer lots of support if they happen to say something you dont like they are doing it with best of intention, as people do not know what to say when informed of how hubby is. take care

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 17 Jun 2015 at 13:08
Poppy

hi from me, I have only just been able to respond to your original post as I have been unable to access the forum for a couple of days. It is great to see everyone has given you as much reassurance and information as they can. My post is really just to introduce myself so Hi there I am Mo and I have been exactly where you are at the moment. It is without doubt a nail biting, nerve racking almost sick inducing anxiety so I feel for you. As Lyn and others have said the bone scan looks to have been done as a reassurance thing especially if your husband has another significant illness to contend with.

I have heard of results for other tests being given over the phone in exceptional circustances but consultants do not like doing that, they like to be able to discuss what they can see (or not see hopefully) from my experience they actually wanted to show us what Mick's scans looked like against a normal scan and against his MRI.

I am hoping that your consultant radiologist wants to show you the scan to reassure you that all is well, of course they may also want to point out something that might be nothing to do with PCa and discuss that. I have heard of them picking up some arthritic damage that would benefit from treatment and even in one case a hairline hip fracture which had gone undiagnosed albeit with significant pain and discomfort for months.

I will be thinking of you and wishing you all the very best for Friday and beyond.

xx

Mo

User
Posted 17 Jun 2015 at 21:24

Again thanks so much... Although my friends, colleagues and family are wonderful you can see the look in their eyes when trying to reassure you. Dave is my second husband , we have not yet been married two years... He is my everything. It is comforting to speak to those who have been in a similar position . Hopefully Friday will bring some positive news x

User
Posted 18 Jun 2015 at 20:34
Hi poppy

My husband age 58 was diagnosed last October with Gleason 7 psa 9.2, and contained. He had to have both an mri and a bone scan before treatment was discussed.

He had his surgery in December, and the surgeon was happy it was contained, although his Gleason score was upgraded to 9.

I have recently been where you are now. If you'd like to talk, please feel free to message me. In the meantime, I would suggest that you read posts on this forum and literature from the charity, but nothing else. You can go mad reading everything out there, and there's a lot of contradictory stuff. If you have questions, someone on here will know the answer

Good luck for your appointment. I hope the news is as good as it can be.

Louise

User
Posted 19 Jun 2015 at 16:07

Hi all, good news from consultant , cancer contained in prostate, remains Gleason 7. Hubby has commenced hormone treatment today and will start radiotherapy shortly. Hormone treatment will be for 3 years and side effects are worrying but feel like we have won the lottery x

User
Posted 19 Jun 2015 at 16:11
That's so good to hear. What a weight off your mind. Hopefully the side effects, if any, will be minimal. You can move forward now.

All the best, Arthur

User
Posted 19 Jun 2015 at 16:42

Enjoy the good news.

Intensity of side effects vary considerable between guys so just take it as they come.

Ray

User
Posted 19 Jun 2015 at 18:57

Glad the news was (relatively) good Poppy. It must be a massive relief to you both.
I wish your husband success with the hormone treatment and hope the side effects are few.
You've had an early Christmas eh!

We can't control the winds - but we can adjust our sails
User
Posted 19 Jun 2015 at 19:52
I have not posted on your thread before, but I have been following it with empathy of having been there. I am pleased that it is contained and although daunting I am sure that the treatment will not be as bad as you fear.

All the best

Alison

User
Posted 19 Jun 2015 at 21:04

glad you got some news you would have been praying for

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 20 Jun 2015 at 09:54
That is good news. As a matter of interest, why have you decided to opt for hormone and radiotherapy instead of surgery?
User
Posted 21 Jun 2015 at 19:37

No intention of trying to influence treatment decision because all treatments have pros and cons relative to each other and at the end of the day a man has to decide what treatment option open to him he goes with. Sometimes a consultant will make a strong recommendation in a particular case but not necessarily . But reasonably, a man will be told if there is/are a reason(s) why particular treatment(s) is/are not recommended in his case.

Just interested to learn whether any option other than RT+HT was considered.

Barry
User
Posted 21 Jun 2015 at 19:39

Hi all, basically we had no other option than radiotherapy and hormone treatment. Surgery was not an option as my hubby got septicaemia after first biopsy. Consultant said it is difficult to remove the prostate after serious infection. They were also concerned as he has MS which is dormant at the moment , but can lead to incontinence if he has a later episode. We are so relieved but also thought of three years hormone therapy is harsh......but we are strong and will get through this x

User
Posted 21 Jun 2015 at 21:25

Hi Poppy,

Well agonising over which option to go with as many have to decide is simplified with Hobson's choice. RT can work well and most men like me found it is a doddle, rather like having a prolonged X-ray at each session, though it can be inconvenient having to attend hospital for each 'fraction'. Like many other men, I found the worse aspect was the HT which can have various side effects but some of these can be reduced by taking certain measures and it is worth finding out about these and being prepared.

Hope all goes well. Please keep us informed.

Barry
User
Posted 21 Jun 2015 at 22:59
Hi Poppy

I don't know if I was naïve or just didn't know any difference but I was only offered RT and HT. when I look at my results on diagnosis comparing them with others they seem to have several choices which I didn't. Apart from the travelling to hospital each day for the RT it was a fairly easy process. Hardest part was drinking a bottle of water before the RT and hoping it wasn't delayed! I travelled in a taxi provided by the hospital and met a lot of good guys in the same situation and many of us became friends. We would support each other, compare notes and 99% were positive which helped. We could also help others who 'joined' as others completed their treatment. As for the HT I've put on weight around the middle and get hot flushes from time to time, I've had HT since January 2013 and it's not a great problem going to the surgery every 3 months for the injection.

Hopefully they can start the treatment ASAP

Arthur

User
Posted 06 Sep 2015 at 18:41
Hi Poppy,

Just wanted to say hello and ask how your hubby is getting on?

What good news that it had not spread.. Hormone therapy can very quickly start to make a big difference. The side effects can be managed. My dad got very hot flushes but we found using a cool pillow in bed (special one that stays cool) really helped. Changing his diet really helped too... Cutting out certain meats, dairy and other stuff helped his energy levels. He got very tired but he adjusted his life to build in rest time each day which helped.

Joan

User
Posted 06 Sep 2015 at 19:42

Originally Posted by: Online Community Member
Hi Poppy,
Just wanted to say hello and ask how your hubby is getting on?

What good news that it had not spread.. Hormone therapy can very quickly start to make a big difference. The side effects can be managed. My dad got very hot flushes but we found using a cool pillow in bed (special one that stays cool) really helped. Changing his diet really helped too... Cutting out certain meats, dairy and other stuff helped his energy levels. He got very tired but he adjusted his life to build in rest time each day which helped.

Joan

Actually, some of the side effects can be horrible and even life-changing but possibly not so noticeable for your elderly dad as they would be for a younger man or his wife & family :-( 

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

User
Posted 09 Sep 2015 at 06:27
Good point Lyn, thanks for clarifying. It is different for younger men as the side effects can be more life changing.

Joan

User
Posted 26 Sep 2015 at 00:52
Hi all, hubby is doing well but side effects are indeed awful and life changing. Dave has every possible side effect that hormone therapy can throw at him...This awful illness does change your life drastically but we have to stay strong ... I am

Just so grateful that cancer hadn't spread ( although it is very close to edge of gland , hence 3 years of HT). Take care all x

User
Posted 26 Sep 2015 at 01:32

Hi Poppy,

Unfortunately the side effects of hormone therapy can affect your life quite badly. 

I feel so tired that I feel like I'm ready to go to bed after only being awake for a couple of hours.  Hot flushes, which did disappear but have returned.  An active sex life which disappeared several days after starting HT.  Weight gain.  Muscle weakness.  Lack of concentration and forgetfulness and in my case, a heart attack (though my GP says I would have had one at some point, it may have been hastened by my cancer treatment).

Having said that, I'm pleased that I have a chance that I may be cured.

May I wish your husband the very best of luck in his treatment.

Steve

User
Posted 26 Sep 2015 at 10:02
Thanks Steve, Dave has every symptom you have described... It is really hard for him to cope sometimes especially the tiredness and forgetfulness ... We just have to take this one day at a time . It really helps to talk to others in the same position. It upsets me when those who have no knowledge of the illness say "if you have to get cancer it is the best one to have"... Really !! Even for the lucky ones where it hasn't spread your life changes dramatically . It is early days for us but I really mourn the relationship we had.

Take care of you

X

User
Posted 26 Sep 2015 at 10:20
Hello Poppy

Is your oh in the middle of his RT at the moment? If he is, this can add extra stress and side affects to the situation as it can do beforehand, as you are both bound to be thinking about it starting and how you will cope with the upcoming appointments etc.

These first few months are really difficult as the shock is sinking in and it is still very upsetting and raw. This may be making you both feel a bit low and lethargic.

Hang in there, your OH will find ways of coping with the side effects whether it be an afternoon nap, a change in bedcovers to assist with hot flushes. Some people find that gentle exercise like brisk walks help.

Lots of things to try.

He is lucky to have a lovely wife like you.

Alison x

User
Posted 26 Sep 2015 at 10:35

Hi Poppy
Which HT is he on may I ask ? When I was given the Oncologist option of treatment , it was to be 3 yrs Bicalutamide with Tamoxifen , with some HDR Bracchy , then some RT last of all. The option was taken away and I had radical surgery instead . Unfortunately that failed ( cancer had already spread ) and I now have to have the HT RT route anyway grrr. Was just interested in what he is taking as it can sometimes be adjusted or changed
Chris

User
Posted 26 Sep 2015 at 12:00

Hello Poppy,

Sorry your husband is finding it tough going.

It's a very difficult time for both of you I know. All we can do as wives and partners is to be there and be as supportive as we can, and I'm sure you are already doing that.

My own daughter used those very words to us when we told her, and she had already had her own cancer and her son's cancer to deal with. I suppose compared to theirs for her dad, at least, he was lucky to get such a low grade as it is.

It still grated a bit though so I do understand how upsetting it is. It seems to be a bit of an automatic saying that has sprung up, like the nurses telling you many men die WITH it rather than OF it. Very helpful that when you've just been diagnosed. The amount of friends and neighbours who said it too, grrrrrrhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

I think it must be an automatic reaction, perhaps because it comes as such a shock when you tell people, especially when you are relatively young and they don't know how to deal with the knowledge so think they are being reassuring.


However, no man, no matter how "simple" his version of PC is will get away with no post treatment symptoms at all and you feel like shouting at them - you don't know what you're talking about !! Well I did anyway

Thinking of you and hoping the side effects lessen.

 

Edited by member 26 Sep 2015 at 12:02  | Reason: Not specified

We can't control the winds - but we can adjust our sails
 
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