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User
Posted 24 Jan 2015 at 14:13
My father in law was diagnosed in Sept 14 with advanced prostrate cancer. Scan showed lymph nodes were affected and bone scan showed "significant disease throughout the entire skeletal frame" His PSA level was 5000 He has been having hormone injections since September. He now has severe groin pain on the left had side same side we were told lymph nodes were blocked, could this be the cancer spreading. Feeling quite helpless as Urologist is very vague as to what's happening
User
Posted 25 Jan 2015 at 10:05
Hello and welcome to the site that no one wants to join.

Sorry to hear about your father in law, I know it's a very worrying time and I'm wondering if your FIL has been referred to an oncologist since they are often a more appropriate specialist than a urologist (though some people here are very happy with their urologist treating them). It would help a little if you were able to tell us his G score, and current PSA although with many mets and such a high PSA he must be very high risk.

Has he had any contact with the local MacMillan or hospice staff? I tend to recommend an early referral as they can talk to him about his Cancer and are brilliant at advising on pain relief and can coordinate between GP and hospital on his behalf.

I don't think anyone here can say if the pain you mention is the Cancer spreading further, I think this is something he should discuss with his GP, urologist or his specialist nurse. My own husband had some dreadful pain and awful blood results last year, we all thought (including the oncology team) that it was the Cancer and it turned out to be a blocked bile duct.

It's such a worrying time, but if it helps at all, we have guys here with even higher PSAs and they are still going strong. Depending on his current general state of health and his age there are other courses of treatment that can be offered. I mention age purely from the point of view that my own FIL didn't want any treatment, at 90 years old he wasn't interested.

Please let us know a few more details if you can and definitely get a referral to MacMillan as soon as possible.

PS, I'm not sure if you know but you can click on a user name and see the profile information of other members, it often helps to get an idea of how others have fared.

Kindest regards
Allison
User
Posted 25 Jan 2015 at 17:12

Hello Sheena,

Your father in law sounds truly fed up with everything, and understandably so. I was a palliative care CNS in a district hospital, and I suspect his groin pain may be a combination of the lymphoedema (if you meant that, rather than lymphoma) and perhaps some nerve pain from the affected lymph nodes you mention. It could also be ureter pressure and pain from his kidney. However, only a thorough clinical examination could confirm the cause.

Its an excellent idea to ask for a specialist palliative care nurse referral, as he or she could give both good symptom control and psychological support.

They would also be the 'short cut' to other services that your father in law could benefit from. The GP, specialist nurse at the hospital or Hosp doctor could make the referral for you.

Hope he feels more comfortable soon....

Warm wishes

Sue

User
Posted 26 Jan 2015 at 21:49
Hi Sheena,

He might actually enjoy the drop in centre at the hospice, as the staff and volunteers there will be very skilled at taking things at his pace...so should let him talk about things as much or as little as he feels comfortable with. I'm sure the GP did this, but just checking he's got some laxatives prescribed, as morphine is a great constipator, and he might find that to be a problem he could do without. He might be feeling a little sleepy too, for 2-3 days whilst his body adjusts to morphine dose.

Are you ok? It can feel a big weight on your shoulders when someone you care about is having a tough time...?

Warm wishes

Sue

Edited by member 26 Jan 2015 at 21:50  | Reason: Not specified

User
Posted 26 Jan 2015 at 23:46
Hi Sue Yes doc gave him laxatives this morn to take as we don't need a flare up of colitis as well to cope with. I am doing ok. I have a couple of great friends that I can talk to as I try to shield hubby as much as poss. He is quite quiet at the moment and I think he finds it hard seeing his dad like that. My friend volunteers at our local hospice and I fancy going along but don't want to waste their time.

Thanks again for listening.

Noofywoo


User
Posted 27 Jan 2015 at 06:55

Hi Sheena,

You'd be very welcome at the hospice, I'm sure...and as well as support for you, it would give you a chance to ask questions and get a feel for the place.

You're doing a grand job caring for your father in law, (and keeping an eye on your husband's well being). I'll message you, and we can stay in touch?

Warm wishes

Sue

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User
Posted 25 Jan 2015 at 10:05
Hello and welcome to the site that no one wants to join.

Sorry to hear about your father in law, I know it's a very worrying time and I'm wondering if your FIL has been referred to an oncologist since they are often a more appropriate specialist than a urologist (though some people here are very happy with their urologist treating them). It would help a little if you were able to tell us his G score, and current PSA although with many mets and such a high PSA he must be very high risk.

Has he had any contact with the local MacMillan or hospice staff? I tend to recommend an early referral as they can talk to him about his Cancer and are brilliant at advising on pain relief and can coordinate between GP and hospital on his behalf.

I don't think anyone here can say if the pain you mention is the Cancer spreading further, I think this is something he should discuss with his GP, urologist or his specialist nurse. My own husband had some dreadful pain and awful blood results last year, we all thought (including the oncology team) that it was the Cancer and it turned out to be a blocked bile duct.

It's such a worrying time, but if it helps at all, we have guys here with even higher PSAs and they are still going strong. Depending on his current general state of health and his age there are other courses of treatment that can be offered. I mention age purely from the point of view that my own FIL didn't want any treatment, at 90 years old he wasn't interested.

Please let us know a few more details if you can and definitely get a referral to MacMillan as soon as possible.

PS, I'm not sure if you know but you can click on a user name and see the profile information of other members, it often helps to get an idea of how others have fared.

Kindest regards
Allison
User
Posted 25 Jan 2015 at 16:20

Thanks Alison,  Not sure what his G score is.  We were told on 10th September that it looked as if he had prostrate cancer and the scan showed it might be in his bones and his lymph nodes and that Urology would see him. We were saw the Urologist 2 days  later who said PSA level was 5000 and infection markers were 1000. He didn't want him discharged as they were concerned about his left kidney which was 2 1/2 times normal size and they had to get that down so he increased his water tablets, he also prescribed Degaralix injections every month.  The hospital wanted him to have a bone scan but he said it was "academic".  We insisted on scan which is when we learned about how bad it was in the bones.  We were told he would see an Oncologist but told after weeks of chasing the appointment it had been decided that Oncology was not required.  The Urologist finished the meeting by saying see you in 3 months.  FIL is 80 in March, has lymphoma in his legs due to cancer, extremely bad varicose  veins on both legs and Colitis.  He never complains about his ailments until last week when he told me that he didn't think he had long left as he feels awful all the time.  His next PSA test is 5th Feb with follow up on 13th Feb.  Thanks for your help so far. Sheena

User
Posted 25 Jan 2015 at 17:12

Hello Sheena,

Your father in law sounds truly fed up with everything, and understandably so. I was a palliative care CNS in a district hospital, and I suspect his groin pain may be a combination of the lymphoedema (if you meant that, rather than lymphoma) and perhaps some nerve pain from the affected lymph nodes you mention. It could also be ureter pressure and pain from his kidney. However, only a thorough clinical examination could confirm the cause.

Its an excellent idea to ask for a specialist palliative care nurse referral, as he or she could give both good symptom control and psychological support.

They would also be the 'short cut' to other services that your father in law could benefit from. The GP, specialist nurse at the hospital or Hosp doctor could make the referral for you.

Hope he feels more comfortable soon....

Warm wishes

Sue

User
Posted 26 Jan 2015 at 17:30

Thanks Sue, I did mean Lymphodema having a bad day. I took him to Doctor this morning and Doc confirmed it is nerve problems due to cancer. He has prescribed slow release morphine. He was a bit brighter this morning however he has always said he doesn't want to know outlook prognosis etc, then will ask me if I know how long he's got!. No one has ever said anything concrete however I know a Doc who was a Prostrate consultant at a specialist hospital he reckons he might last till Jan/Feb. It's hard going but trying to keep him positive. I have thought about taking to our local drop in centre at the Hospice but not sure if he would like that as he doesn't like talking about his "trouble"

Thanks Sheena

User
Posted 26 Jan 2015 at 21:49
Hi Sheena,

He might actually enjoy the drop in centre at the hospice, as the staff and volunteers there will be very skilled at taking things at his pace...so should let him talk about things as much or as little as he feels comfortable with. I'm sure the GP did this, but just checking he's got some laxatives prescribed, as morphine is a great constipator, and he might find that to be a problem he could do without. He might be feeling a little sleepy too, for 2-3 days whilst his body adjusts to morphine dose.

Are you ok? It can feel a big weight on your shoulders when someone you care about is having a tough time...?

Warm wishes

Sue

Edited by member 26 Jan 2015 at 21:50  | Reason: Not specified

User
Posted 26 Jan 2015 at 23:46
Hi Sue Yes doc gave him laxatives this morn to take as we don't need a flare up of colitis as well to cope with. I am doing ok. I have a couple of great friends that I can talk to as I try to shield hubby as much as poss. He is quite quiet at the moment and I think he finds it hard seeing his dad like that. My friend volunteers at our local hospice and I fancy going along but don't want to waste their time.

Thanks again for listening.

Noofywoo


User
Posted 27 Jan 2015 at 06:55

Hi Sheena,

You'd be very welcome at the hospice, I'm sure...and as well as support for you, it would give you a chance to ask questions and get a feel for the place.

You're doing a grand job caring for your father in law, (and keeping an eye on your husband's well being). I'll message you, and we can stay in touch?

Warm wishes

Sue

User
Posted 27 Jan 2015 at 11:21
I would like that Sue thanks

Sheena
 
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