Advanced& in bones.Is it all bad news now?

User

Posted 05 Feb 2016 at 12:43

Hello Everyone, Just needing someone that is going through this terrible illness. My poor dad (75) has just been Told he has advanced prostate& it's in his bones& spine. It's all a bit of a blow for everyone as 7 weeks ago he was fit,& told I was Diverticular disease,,despite his pain& losing over 2 Stone!! It was heartbreaking not seeing him getting any better,& docs telling us it was nothing sinister& now to get told all this within 5 days. He went for biopsy,but they didn't even get one,as his prostate was that large& hard& had a 300 score,Is it the end fort him as when reading through some posts this is extemly high. He got 2 hormone injections in stomach that day,then was n hospital as had a few accidents,ias incontinent& was unaware at all of this. He has just came out hospital this week& had to come out with catheter bag,it has been so distressing seeing my dad cry, it just seems it's bad news after another, He does seem slightly better since getting the HT injections,so at least he is not in the pain that he put up wih all that time. I'm sorry for everyone on here that is going through this I didn't realise how hard it is for people till happens to yourself/a loved one. Has anyone got any experience of this bad or good? Thank you

User

Posted 05 Feb 2016 at 14:52

As hard as it is to hear news that you weren't expecting, I think you could do with taking a deep breath and a calm down. Men tend not to die immediately after they have been diagnosed - yes, your dad's cancer is incurable but that doesn't mean he is anywhere near the terminal stage yet. The big bits of information will come from the scans, and the treatment plan will come from that.

Until recently, chemo was only given to men with prostate cancer when they were at the end of their lives but recent research has shown that sometimes if it is given early it can give men many months or years longer to live so dad might be offered that as an option. The hormones will have already started their job - these starve the cancer of testosterone so that it cannot grow. As the cancer starves, some of the mets (the places where it has spread) will shrink which also helps to reduce pain.

The main concern for the doctors now might be to check that it hasn't spread to his liver or other main organs, as it is much harder to keep someone well when the liver has been affected. Your mum and dad will hopefully also be advised about spinal cord compression, which can be life-changing. I am wondering if that is something they thought might have happened this week when dad didn't know he had solied himself. It is rare but very important for men with spread to the spine to know the symptoms.

Usually the hospital staff are not able to give a 'time' (I assume you mean how long he might live) because they really don't know - if he responds well to the hormones and/or whatever other treatment he is offered, he may still be here for many years. If he has a rare type that doesn't respond to treatments, then it may only be a few months. No point worrying about the what ifs until you have a full picture.

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

User

Posted 05 Feb 2016 at 12:59

I'm sure this must be a difficult and worrying time but it's not necessarily all bad news. His PSA was high but I've seen it over 60,000 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

I was diagnosed in Feb 2008 with a PSA of 214 (at biopsy) and extensive spread to bone, mainly spine, pelvis and ribs. My PSA is about 1000 at the moment and I'm still in relatively good health. HUGE advances have ben made in the last decade as witnessed by the fact that I have been on two drugs that didn't exist outside the lab when I was diagnosed. The HT should have immediate effect and things will settle down very quickly. No guarantees but trust in the medics and read my profile http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Nil desperandum

Allister

User

Posted 05 Feb 2016 at 13:07

Hi Preciousislife,

So sorry to hear your Dad has been diagnosed with PCa. It is a terrible shock for all concerned and time is needed to come to terms with what is a life altering diagnosis. We always suggest that people download the PCUK toolkit from this site, it gives lots of clear information about the disease, diagnosis, treatments, help for family, etc. There are also specialist nurses on the PCUK Helpline who are a good resource for phone support, as are resources like Macmillan.

Prostate Cancer is such an individual disease, some men have a very high PSA but the disease hasn't spread, others, like my late partner had a low PSA of 6.4 but a very agressive disease which had spread all over. Hormone injections are usually the first line of treatment to help shrink the tumours. Again, some men respond very well to these and the disease can be kept in check for some years. There are lots of other treatments available. Have you been to see your Dad's oncologist or urologist with him though some patients dont want this and prefer to keep things very private. It is devastating seeing a loved one in distress like this but you will get lots of support here, many of us are going through a similar scenario or are in the same boat. I've just seen that Alister has posted, as he says, have a look at his profile. We also have a guy in my local PCa Support Group diagnosed with spread to bone and still here around a decade later. I send you my best wishes at what is such a difficult time,

Fiona.

Edited by member 05 Feb 2016 at 13:08 | Reason: Not specified

User

Posted 05 Feb 2016 at 14:08

To anybodys profile press on their avatar

Regards

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Feb 2016 at 14:27

Hi Preciousislife,

Lots of the men on the forum have had catheters to help with passing urine properly, it's not an indicator of life expectancy so don't worry about that. It is hard to be accurate how long a catheter is in situ depending again on the individual man and his condition. Sometimes, having a very large prostate can press on the ureter and cause difficulty passing urine so a catheter is fitted. Has Dad been referred to the local District nurses in case he needs help managing the catheter ? The first time my partner had one fitted, the hospital werent very good about follow up. The catheter will need to be reviewed but it may be Dad's treatment is at an early stage and its hard for the medical team to be specific. That's not uncommon though hard for relatives to be left 'up in the air'. The medical team will possibly want things to settle with your Dad then review the situation a bit later.

Fiona.

Edited by member 05 Feb 2016 at 14:28 | Reason: Not specified

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User

Posted 05 Feb 2016 at 12:59

Nil desperandum

Allister

User

Posted 05 Feb 2016 at 13:07

Hi Preciousislife,

Fiona.

Edited by member 05 Feb 2016 at 13:08 | Reason: Not specified

User

Posted 05 Feb 2016 at 13:17

Thanks Allister, For replying back, Yes it is all so worrying, they told dad the C was in his bones& spine after he got the MRI scan,but he has still to go for a bone scan. We are waiting on word to go for this I'm not sure why,is that to give a time on it,?

& if so I don't think it would be good for my dad to hear if it is bad news,or none of us either,as its just one blow after another. HIS right leg has been sore for a long time and he is limping now this just happened after xmas,the stomach pain is the most trouble with pain before they found out it was C and not bloody Diverticular!! & back pain came on 2 weeks ago.

yes it is good he is not in pain now but still exhausted,hard as he was such a fit man & running his farm before

I'm glad you have a good story to tell ,thank you

User

Posted 05 Feb 2016 at 13:26

Sorry how do I view your profile Allister& Fiona, no my mum went with him to urologist,I dont know how quick we will get the bone scan in, & first of all they said he would get catheter in for 2 weeks& then they changed it to 3 months,why would that be? But at least they said 3 months as that makes me hope he will still be here then,it's just so so worrying,it was hard seeing my dad cry😢

Thank you for replying x

User

Posted 05 Feb 2016 at 14:08

To anybodys profile press on their avatar

Regards

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 05 Feb 2016 at 14:27

Hi Preciousislife,

Fiona.

Edited by member 05 Feb 2016 at 14:28 | Reason: Not specified

User

Posted 05 Feb 2016 at 14:45

Hi Preciouslife,

We have had quite a few daughters on the forum recently worried about there dads, it is all very scary in the beginning with so much to take in. The thought to hold onto is that treatments can give many years to men with incurable PCa .

Trevor was diagnosed in May 2013 with a PSA of nearly 13000 he has extensive mets spine, ribs , pelvis and shoulder he also has lymph node involvement. He was misdiagnosed the same as your dad for nearly 18mths . His walking at the time of diagnosis was terrible in fact he could barely stand but 3 years on and he is till here and attempting to renovate our very old bungalow.

I hope this gives you some hope

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Feb 2016 at 14:46

Hello Precious and welcome.

This is a difficult time for everyone, the initial knowledge and fear that the word Cancer generates.

You have already been given good helpful information so I won't repeat it, I just wanted to welcome you.

Your dad will be emotional, partly from fear, partly from the pain, distress and embarrassment which his current situation is causing. Many men find the idea of a catheter very hard to deal with. Dad will need help managing it and I expect he has been told how important hygiene is in that area?

Would it be possible for you or somebody else close to your parents to go with them when the scan is done, and for the results when they are given.
I was thinking that it won't just be your dad that will need support then but your mum too. It can be very hard on us wives. We have to stand around watching our men go through it all and we are powerless to help, especially in the early stages of diagnosis.

Ones the "proper" diagnosis is done it may get easier all round as you will then know what you are all dealing with.

Hopefully your dad's pain will be controlled by the injections and in himself he may feel more able to cope. At the moment he isn't just juggling with the pain he has been in but also worrying about himself, his wife and the future.

We are here as and when you need us so please come back and let us know how you all get on.

Best Wishes
Sandra

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

User

Posted 05 Feb 2016 at 14:52

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

User

Posted 06 Feb 2016 at 12:56

Thank you,that has given me some hope x

User

Posted 10 Feb 2016 at 14:12

Hello Again,

My dad has got his bone scan in for the Monday 22nd Feb,& another appointment in a month later,I take it this one is the outcome of the bone scan& how they will treat it. In the meantime he has new pain in his arm now. I just feel it's an awful long time by the end of March to get treated,though as someone said they wait to see how he goes with the HT first

He is just slightly better,managing to eat better but still terrible trouble walking,with pain in his leg. Is it normal for his colour to fluctuate,at times he is pale white,& can do nothing now. he is that frail now. Also he has a sore bottom,my mum did say to the district nurse yesterday when she was out chaging his catheter bag about a cushion,but there was no follow up with anything, does anyone know where I can buy this,I think it is a special kind.

Thank you all for responding x

User

Posted 10 Feb 2016 at 14:34

The colour changes are common, when we feel pain our body tries to focus resources to counter it, that causes loss of colour. The HT may do the opposite and give him hot flushes which gives him more than normal colour.

More worrying is that you are not getting support to keep him comfortable at hone and stable on his feet.

A fall at this time would be a major setback.

I would call Dad's GP and ask if you can get Macmillan nursing support to visit you. They should see if he needs a walking aid, a specialist cushion and maybe a topper for his bed to help prevent any pressure sores. Also any other things that will make things easier for you all.

In the meantime if his bottom is sore (as in tender skin)then maybe use some sudacrem after he has been to the loo. You can buy that at any chemist a small tub is less than £2 once he or someone helping him has thoroughly cleaned his bottom using a moistened cloth or paper tissue then put a small smearing of the cream on with a dry tissue or cloth.

Then ask the district nurse to check on this next visit.

If he has any bleeding from his bottom call his GP for advice.

There is help and support out there but sometimes you have to push to get it initially.

I wish you the best

Xxx

User

Posted 10 Feb 2016 at 15:04

Originally Posted by: Online Community Member

Hello Again,
My dad has got his bone scan in for the Monday 22nd Feb,& another appointment in a month later,I take it this one is the outcome of the bone scan& how they will treat it. .... I just feel it's an awful long time by the end of March to get treated,though as someone said they wait to see how he goes with the HT first

Preciouslife, I am really sorry to have to say this but I think you may have misunderstood. The hormones ARE the treatment, there may not be anything else they can offer him. So it isn't a long wait until March for treatment, it is simply a wait until March to see what impact the hormones have and whether he can be made any more comfortable. I would hate for you to go through the next few weeks hoping for some miracle treatment only to be devastated & disappointed when dad sees the specialist.

I think the advice above to ask the GP for a referral to Macmillan or your local hospice outreach service is really good advice. They will be able to advise on things like cushions & other practical matters - they may also be able to advise on whether dad could claim any benefits or financial support to pay for equipment or for people to stay with him and help him. Your mum may qualify as his carer.

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

User

Posted 10 Feb 2016 at 17:22

Thank you Mo about getting gp to refer to Macmillan I will do that tomorrow& Lyn, I wish there was some miracle cure for evrerone and anybody's loved ones that is going through this hellish disease 😢

User

Posted 14 Feb 2016 at 04:29

Hi Andrea.

It's all like a rabbit in the headlights when you get diagnosed. Your Dad will be stronger knowing he has you to support him as well as all others by him. It will take him time to settle into the hormone treatment but do talk to him all you can and try to plan something for after each appointment. Suggest to Mum she goes for lunch or dinner or you could cook something you know he likes. You might not think it helps but it will give you something to focus on and the last thing mum will be doing is worrying about food. So just a cake or a nice sayoury treat M and S If you don't like cooking....

If you help her then she can support him. It's all about team work. PC affects you all.

Just to give you a little insight too to how Dad will feel... It's like PMT and the menopause all in one go. All girly stuff flowing through. We girls get these in gradual steps HT is full on geting girl stuff all in one go.

If he glows red and starts to sweat explain to him that's ok... its working. See them as power surges of testosterone thefts. Some peole get depressed a little so do little things that become the big things when your mind is overpowered with information.

When my hubby went for his bone scan he had an injection which had to stay in his system for a few hours so we went for lunch..it seemed weird to plan it at first but we remember it not just for the scan now but the talking we did over lunch.

My hubby and I both attended the appointmts together with his daughter as its hard to remember everything.

However your mum may want to protect you... it might be her way of doing something for you. If your Dad finds it easier with just her it may be he is not aware you can go but only if he chooses to. He also will want to protect you it's a Dads job and his choice of who is with him.

It's a job he signed up for when he had you. Xx.

You should allow yourself to be unsure of whats ahead. It's ok to do that. When people say stay positive it's because they have tried the alternative and they know it does help to try to stay positive.

What ever is ahead is new ground so it's a path none have travelled so journey together and accept any support you can get.

PS. Aqueous cream is a must for anyone with soreness from a catheter!

Sending a hug to all.

One size fits aĺl.

User

Posted 14 Feb 2016 at 05:14

the colour changes we use to joke that in a morning I looked like a match stick as my face was red with a white body, does not happen very often now

regards

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 14 Feb 2016 at 09:50

Hello Deaffromsnoring (is it the other half?) and welcome

What a lovely first post, and so helpful to Andrea.

Having read your profile, I like your thinking and your way of dealing with all this horror.

We too laugh a lot, but then compared to many on this site we are very very lucky so have much to laugh about.

You are right about the stay positive from members on here, because they know that there is no alternative.

I think it's a bit different when friends and neighbours say it as it's pretty meaningless,, but then I think it's more likely said by them because they are too stunned to think of anything else when you first tell them

All the best
Sandra

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

User

Posted 14 Feb 2016 at 11:27

Hi Preciousislife

My dad was diagnosed with advanced PCa in January 2013. He started off on HT injections every 3 months and still continues to have those now. He also, last year had a course of chemo for which he managed very well. He seems to have had a few issues along the way which aren't necessarily related to the PCa but apart from that, he is still going strong 3 years later.

I know exactly how you feel when you first hear and panic. I heard the word cancer and thought that's it now, but there are so many new medications and treatments now that it doeesn't necessarily mean that. I have been so proud of the way my dad has stayed positive over the 3 years since diagnosis. He is only 72 now but insists he is going to live until he is 104!!

Take Care

Rachel

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