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Just about to start treatment

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User
Posted 21 Sep 2015 at 22:23

Hi

 

My husband has just been diagnosed with Prostate Cancer.  His PSa is 2345.  He has had a bone scan and it showed up a couple of areas in his left hip and ribs where there may be cancer cells.  He is due for a full body scan tomorrow.  It has all moved so fast it is difficult to take it all in.  After his scan he starts treatment.  He has pills to take starting after the scan then three days later he starts hormone treatment.  He has never really had anything wrong with him before and we are both wondering what to expect.  He is 71 but a fit 71.  I can't praise the GP and hospital enough. They are really geared up and moving extremely fast.  I know the PSA is high but have seen other people on forums with similar who have had successful treatment.  I suppose it also hinges on the result from the body scan as well.  He is having a full body CT. 

He is experiencing fatigue and a feeling of pressure in his head.  Not headaches.  His head was scanned and nothing showed up.  We have been told that the fatigue will ease as the treatment reduces the PSA.  His Gleason score is 4+4 and he is between t3 and t4. 

 

Tattiehead

User
Posted 15 Oct 2015 at 07:52

morning tattiehead
I also have metatastic cancer, same camp as your hubby, just started my chemo got 2nd lot next week, I assume you know all about the great results from the stampede trial if not info is on here or on line.

dealing with issues that will happen in the future and talking about them now are tough, we as a couple are going through this and just doing one at a time until wife is confident in what to do, we started with gas and electric and how to find the best deals, we have joint bank account, and discussed but as yet not done anything re other accounts, we have also completed a will.

not heard about being offered a tour of a clinic before, but when you do visit the staff are full of understanding their is no rush from them, when you do go my advice is take in a small cool box with drinks and a snack in, also something to read, my last visit was about 90mins

hubby is going to get the best possible treatment at the moment

as I said am into week 2 of my Docetaxel at moment no major side affects, just feel a little more fatigued, the main thing I have done is to cut down on how large my meals are and eat little and often otherwise it does cause some windy issues

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 15 Oct 2015 at 12:36

Hi Tattiehead,

Your reactions are perfectly understandable, this disease turns people's live upside down. Re; the chemo, my local prostate support group had our quarterly meeting last Monday. The speaker, a clinical oncologist, had been involved with the STAMPEDE Trail from Day one. She was presenting what are to be considered groundbreaking results, that Chemo given early with HT has a significant effect in extending the lives of men with advanced PCa, an average of 22 months. The men she studied were a range of ages and there were differences in how far their disease was advanced. Some tolerated chemo very well, some had to drop out because of side effects. Some chose not to go ahead with the trial, always a very personal decision. But this is probably the first evidenced study that suggests this combination really benefits men with advanced disease. Lots of men on the site have had chemo and there are several threads describing individuals experiences and what helped throughout the treatment, it is not all negative. I wish you the very best in whatever decision you and your husband make and I completely understand the turmoil and uncertainty and the change in lifestyle. Take your time and weigh up all the options. We are always here on the forum to listen,

 

Fiona.

User
Posted 22 Oct 2015 at 19:44

Hi Tattihead, can I just say as regards chemotherapy that my brother had Brain cancer three years ago, but a very rare one, that was actually in the spinal fluid that the brain rests in and on diagnosis was given 6months to live but they said they would try "something". He was in isolation and given chemotherapy every day for a month, it really shook him but at the end of another three months he was told that the cancer was in remission and today he is still alive and fighting fit.

My point being that chemo is not nice and impacts very directly on the body but can be a great benefit. Think positive about it and try not to avoid it, it might be the difference between life and some sort of future or a very dark place.

I hope things fall into place with treatments and advice from everyone on this site is given with the benefit of experience. We all want to be able to help each other.

Regards Chris/ Woody

Life seems different upside down, take another viewpoint

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User
Posted 22 Sep 2015 at 00:35
Hi Tattihead

Welcome to the forum. We all remember the time we were first diagnosed and trying to make some kind of sense of what is happening to us, the initial panic, confusion etc, I know it's easy to say but things will settle once you have the full diagnosis, and a treatment plan is in place. The good thing is that you mention your OH is otherwise fit, so this will help in fighting this.

We have had men here who have had PSA scores into the thousands and have lived with this for many years. The hormones will bring the PSA down very quickly so don't despair,once you have your full diagnosis then we will be able to answer any questions you may have, so ask away, nothing is taboo, they are a great bunch of people on here.

On word of advice would be to write down any questions you have prior to your consultation and either write down the answers or record the conversation so you can refer back to it at a later time, as it's so easy to miss something or mistake what was said as your mind may be in termoil, also order the toolkit from the website or ring one of the nurses on PCUK and they will mail it to you.

All the best

Roy

Edited by member 22 Sep 2015 at 00:37  | Reason: Not specified

User
Posted 22 Sep 2015 at 09:02

Hello tattiehead and welcome from me too.

Roy has said it all for me.

We really all understand where you are now and feeling how you do.

We are a mixed group of Prostate cancer men, their wives and partners so there are different perspectives, all supportive, after all - we know what it's like to be standing where you are now.

Things will calm down a little, or perhaps it just seems like it because, once the initial shock is over and treatment starts, you feel more in control.

Perhaps your other half is feeling pressure in his head due to tension, as well as the tiredness.

You're here now, you've found us, so use us.

Keep that chin up and try and stay strong. Easier said than done I know.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2015 at 07:39

Hi Tattiehead

It's hard to get your head around the diagnosis at first with so much information to take in and rather bewildering words and treatments being discussed but the knowledge from others on this forum is enormous and a huge comfort. Download "the toolkit" or better still ring the phone number on here to talk to one of the nurses and they will post it to you and answer your questions in a clear easy to understand way. Ask any questions you want on here and someone who has been there will put forward their advice from their experience. We are all in this together and together we support each other.

Dick.

User
Posted 14 Oct 2015 at 23:48

Hi

The results are in and he has metatastic late advanced prostate cancer. It has spread to his lymph  nodes in his pelvis and up towards his aorta in the lymph nodes,  No spread to his bones which is good news.  He has started Hormone injections and is due to start Chemotherapy on the 4th of November,

This has been delayed as he needs an operation for a cataract which has to be done before Chemotherapy starts. 

It has been a roller coaster 6 weeks.  I still can't believe it. Although he is 71 this is his first contact with the local hospital and he rarely goes to the Doctor. I find that I am really angry with him for not going to the Doctor sooner.  I also don't want him to have Chemotherapy.  I think that is more to do with the fact that I don't want him to go through it and all the potential side effects that he may have.  And that he may have to go through it all again once the hormone treatment stops working.  Although I am being negative again as that may be a couple of years and who knows what will be available treatment wise then. 

I am normally a positive cheerful person but find it difficult to  find anything positive about having chemotherapy.  I really just want to run away and hide or turn the clock back. 

I am having problems coming to terms with this. And have not reacted well especially when he wants to have a conversation about what I am going to do if I am left alone.  I know he is just being practical but I don't think I am ready for that.  He wants me to look into my financial situation if anything happens to him. I am going to find that difficult but will as it will make him feel better. 

His condition is not curable.  I understand that he is not at the palliative care stage but at the stage where they still need to find the right treatment to prolong life.

I also have a problem dealing with the people at the clinics.  I understand that they are all trying to be positive.  We are trying to be positive although shell shocked. When we were offered a tour of the chemotherapy facilities as a group to see where it would happen and how including refreshments we turned it down and the nurses did not really understand that.  We are just quiet people who just want to get on with it in our own way.  I understand that many people who are alone or need more support would welcome that.

I think that it has all moved too fast and we still don't believe what is happening.  We are not churlish.  We have both had relatives who have died of cancer so understand what is involved.

I think that perhaps I just need a little more time.  We have been married 31 years and together 33.  He has only been to the Doctor about 4 times in that time. 

 

Thanks for listening

 

 

User
Posted 15 Oct 2015 at 07:52

morning tattiehead
I also have metatastic cancer, same camp as your hubby, just started my chemo got 2nd lot next week, I assume you know all about the great results from the stampede trial if not info is on here or on line.

dealing with issues that will happen in the future and talking about them now are tough, we as a couple are going through this and just doing one at a time until wife is confident in what to do, we started with gas and electric and how to find the best deals, we have joint bank account, and discussed but as yet not done anything re other accounts, we have also completed a will.

not heard about being offered a tour of a clinic before, but when you do visit the staff are full of understanding their is no rush from them, when you do go my advice is take in a small cool box with drinks and a snack in, also something to read, my last visit was about 90mins

hubby is going to get the best possible treatment at the moment

as I said am into week 2 of my Docetaxel at moment no major side affects, just feel a little more fatigued, the main thing I have done is to cut down on how large my meals are and eat little and often otherwise it does cause some windy issues

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 15 Oct 2015 at 07:53

Ah Tattiehead, listening is what we do best, as well as that supporting shoulder.

I am so sorry that it has turned out like this. There are a number of men on here, also in the no cure camp who will be along to offer their take on your situation

(Just posted mine and see that nidge has already answered you and is giving you practical advice.

I know it's difficult to even contemplate being on your own at this stage but it probably  helping your husband to get you looking into finances and bill paying, especially if he currently has responsibility for that.  Let him help you. It will take a lot of pressure off him if he knows you can cope with the mundane things, the things that you currently think don't matter, what with everything else going on.

Re: the chemo, not everyone has dreadful side effects and it wouldn't be offered if it wasn't considered of use. A tour of the facility might seem a bit odd, like being a prospective house purchaser, but it is no doubt aimed at familiarising yourselves with the surroundings.

Nidge offers good advice re drinks etc. I've also seen it written that ice cold pineapple fingers help with reducing mouth problems should any occur

I'm thinking of you both

Edited by member 15 Oct 2015 at 08:01  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Oct 2015 at 12:36

Hi Tattiehead,

Your reactions are perfectly understandable, this disease turns people's live upside down. Re; the chemo, my local prostate support group had our quarterly meeting last Monday. The speaker, a clinical oncologist, had been involved with the STAMPEDE Trail from Day one. She was presenting what are to be considered groundbreaking results, that Chemo given early with HT has a significant effect in extending the lives of men with advanced PCa, an average of 22 months. The men she studied were a range of ages and there were differences in how far their disease was advanced. Some tolerated chemo very well, some had to drop out because of side effects. Some chose not to go ahead with the trial, always a very personal decision. But this is probably the first evidenced study that suggests this combination really benefits men with advanced disease. Lots of men on the site have had chemo and there are several threads describing individuals experiences and what helped throughout the treatment, it is not all negative. I wish you the very best in whatever decision you and your husband make and I completely understand the turmoil and uncertainty and the change in lifestyle. Take your time and weigh up all the options. We are always here on the forum to listen,

 

Fiona.

User
Posted 15 Oct 2015 at 15:26
Hi , I am so sorry that you are here.

I was diagnosed a year ago, PSA 342, T4 M1N1a , spread to lymphs the same as your other half. I know you are both going to be all over the place for a while, that is fine, you will have every range of emotion over the coming months.

I had chemo and then radiotherapy , the side effects were minimal in reality, yes a few days I felt sorry for myself but most of the time I could still get out therre and do things.

A year on my PSA is 0.38 and a recent MRI said the cancer is undetectable. I am under no illusions, it is there lurking like brown grass waiting for the rain to come but with a fair wind that rain will take a few years to appear and after that there are already other things that will give me more time so please do believe that you should have good times ahead still.

We are all rooting for you both, keep posting.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 15 Oct 2015 at 15:43

Hi Tattiehead,

I just wanted to add my support and say that given time you will see the wood from the trees, even tho. at the moment you probably don't think you will, BUT YOU WILL.

The others have said it all, if I could add, click on our names to see individual profiles, no  two people are the same, but I think reading about others does help.

Talk plenty to each other about it, and if it means having a cry (with each other) do it, in time it gets better.

As I have been told on here, its a case of finding that town called "acceptance" how long it takes depends on the individual.

I would not use Google, use the professionals who you will get to know, and not forgetting this site, there are a lot of guys on here with a wealth of knowledge so ask the questions.

Stay strong. 

User
Posted 22 Oct 2015 at 10:16

Hi

Thank you for all of your responses. He had a PSA test a week after the first injection and it has fallen from 2345 to 1353. So that is good news and has given us a positive boost. He has his second injection on Friday and starts Chemotherapy on the 4th of November. That would have been started yesterday but he has a cataract which needs to be operated on so that is getting done first.

So hopefully the blood test in a couple of weeks will show another drop. It does give you light at the end of the tunnel.

Thanks

User
Posted 22 Oct 2015 at 14:27

Wow, that's a significant drop, and only after just one injection.  Hope the next one continues the trend and is just as significant!

 

flexi

User
Posted 22 Oct 2015 at 16:55

So pleased great news.

 

User
Posted 22 Oct 2015 at 19:44

Hi Tattihead, can I just say as regards chemotherapy that my brother had Brain cancer three years ago, but a very rare one, that was actually in the spinal fluid that the brain rests in and on diagnosis was given 6months to live but they said they would try "something". He was in isolation and given chemotherapy every day for a month, it really shook him but at the end of another three months he was told that the cancer was in remission and today he is still alive and fighting fit.

My point being that chemo is not nice and impacts very directly on the body but can be a great benefit. Think positive about it and try not to avoid it, it might be the difference between life and some sort of future or a very dark place.

I hope things fall into place with treatments and advice from everyone on this site is given with the benefit of experience. We all want to be able to help each other.

Regards Chris/ Woody

Life seems different upside down, take another viewpoint

 
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