I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Extreme bone pain.

Email this conversation Print this conversation
User
Posted 05 Oct 2019 at 19:26

Hi, 2 weeks ago my 74 year old father started getting very bad pain in his hips, thighs, knees and testicles. The doctor sent him for blood tests which came back with a PSA of 10.6, they examined his prostate then made an emergency appointment with the Urologist in a few days. The co codamol at max strength has done nothing for the terrible pain in his bones and the doc said there’s nothing else they can give him due to his high blood pressure and diabetes type 2.

Today he fell going up the stairs and passed out for a moment due to the pain. He’s now at the hospital getting an X-ray to see if anything is broken, but I think they’ll just send him home if it’s not as they don’t seem to be too interested in why the fall happened and that he’s lost most of his mobility in just 2 weeks. He’s only slept for a few minutes a day in all this time. His prostate has been enlarged for a while, 8-10 years and he has to take one pill a day for it, but they haven’t run a PSA test in a few years until the recent one. I’m worried after everything I’ve researched on the topic, mainly because bone pain is often associated with advanced prostate cancer. I wanted to ask if anyone has had this bone pain without there being prostate cancer present and the cause being just down to the prostate being enlarged? Thanks for any advice. 

 

 

User
Posted 12 Oct 2019 at 17:36

Originally Posted by: Online Community Member
The doctor sent him for blood tests which came back with a PSA of 10.6

His prostate has been enlarged for a while, 8-10 years and he has to take one pill a day for it

A bit late to mention now, but if he's on Proscar, you need to double his PSA test results to get the figure for risk assessment.

User
Posted 06 Oct 2019 at 11:19

Lynda

Most of us here have or had prostate cancer so finding someone with pain and without PCa may be a challenge, hope that doesn't sound rude, it is not meant to be. 

I was given naproxen for my hip pain and although I prefer co codamol the naproxen is effective. Last week I went to my GP with  number of pelvic pains. One of the pains was in the testicle, groin and top of the pelvis, "ah that's all emanating from the osteo arthritis in the the hip". "The numbness in the thigh is a trapped nerve in the back and  the lower back pain could be caused by the raging water infection you have."

I think most of us are conscious of SCC and worry when we get back and pelvic pains.

Sounds like he is in the right place and I hope it turns out to be nothing to serious.

Thanks Chris

User
Posted 06 Oct 2019 at 20:53
There are two separate questions to be answered here, Lynda.

Firstly, does he have prostate cancer? Three quarters of men his age do, so it wouldn't be at all surprising if he has. The tests will show whether or not he does. Don't be overly concerned about it. In many men his age no treatment is required.

Secondly, is the pain caused by metastatic cancer? With a PSA of only 10.6, this is unlikely. Not impossible - there are rare types of prostate cancer which don't significantly raise PSA - but for the common or garden type of cancer, adenocarcinoma, you'd expect much, much higher PSA levels to be associated with metastatic cancer. Please don't assume the worst - wait and see what the tests show. He's in the right place to get diagnosed quickly.

Best wishes,

Chris

User
Posted 13 Oct 2019 at 07:10

I can't work out what hormone therapy that is. Injections for the common ones are usually 3 months apart (sometimes 1 month initially), but you start with a course of daily tablets first for a few weeks (50mg bicalutamide, which won't affect PSA much) with the first injection part way through this course of tablets. Alternatively, daily tablets (150mg bicalutamide).

Do you know what hormone therapy drug he's on?

PSA would usually start falling quite quickly, but takes 3-6 months to bottom out.

I've no idea, but I wouldn't be surprised if a bone fracture at a met might generate a large spike in PSA levels. Also, PSA would probably double if they take him off proscar.

User
Posted 13 Oct 2019 at 12:53
Unless he is on Suprefact (an injection 3 times a day for 7 days) I think she means he has had 3 tablets OR the injections are for something else entirely!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Oct 2019 at 10:40

Best to check exactly what injections he has had. He may be on a trial of a new hormone treatment but usually, they give patients time to consider the implications of trials before starting. The monthly or three monthly hormone injections can be given into the stomach and some can be felt as they are a sort of capsule under the skin. But not given as three injections in three days.

The most common daily injection into the stomach is to prevent blood clots. 

Edited by member 14 Oct 2019 at 10:52  | Reason: Not specified

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

User
Posted 14 Oct 2019 at 14:05

You usually only have two injections of Degarelix and then it goes to monthly injections - the advantage is
a) it can get a man to below castrate level in two to three days (much quicker than the other HTs)
b) there is no tumour flare with Degarelix so the man doesn't need to also take tablets in the first couple of weeks.

Your dad will need to clarify with the GP practice how the monthly injection arrangements will work ... some GP practices arrange the dates (it is important that the injection is never more than 2 or 3 days early or late), order in the injection and then give it. Others will require the patient to request a repeat prescription each month and collect the injection from a pharmacy to take to the appointment with him. Occasionally, a patient has to go to the hospital each month because their GP practice doesn't offer hormone injections.

The side effects are listed here
https://www.macmillan.org.uk/information-and-support/treating/hormonal-therapies/individual-hormonal-therapies/degarelix.html#319017 

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

Show Most Thanked Posts
User
Posted 06 Oct 2019 at 10:53

Thanks for the response guys, the paramedic said the same thing about the pain increasing his blood pressure. It turned out that he had a slight fracture in his pelvis from the fall so they have kept him in and are deciding whether it needs surgery.

The doctor has told him he is concerned the cause of the fall and the problem with his bones may be due to prostate cancer which has spread to his pelvis, He said he will run all the tests for his prostate while     he is in the hospital. I’m really glad he is  finally getting some help but of course terrified about what they might find at this point, it’s all happened very quickly. I’ll update when we have more news, thank you. 

User
Posted 06 Oct 2019 at 11:19

Lynda

Most of us here have or had prostate cancer so finding someone with pain and without PCa may be a challenge, hope that doesn't sound rude, it is not meant to be. 

I was given naproxen for my hip pain and although I prefer co codamol the naproxen is effective. Last week I went to my GP with  number of pelvic pains. One of the pains was in the testicle, groin and top of the pelvis, "ah that's all emanating from the osteo arthritis in the the hip". "The numbness in the thigh is a trapped nerve in the back and  the lower back pain could be caused by the raging water infection you have."

I think most of us are conscious of SCC and worry when we get back and pelvic pains.

Sounds like he is in the right place and I hope it turns out to be nothing to serious.

Thanks Chris

User
Posted 06 Oct 2019 at 20:53
There are two separate questions to be answered here, Lynda.

Firstly, does he have prostate cancer? Three quarters of men his age do, so it wouldn't be at all surprising if he has. The tests will show whether or not he does. Don't be overly concerned about it. In many men his age no treatment is required.

Secondly, is the pain caused by metastatic cancer? With a PSA of only 10.6, this is unlikely. Not impossible - there are rare types of prostate cancer which don't significantly raise PSA - but for the common or garden type of cancer, adenocarcinoma, you'd expect much, much higher PSA levels to be associated with metastatic cancer. Please don't assume the worst - wait and see what the tests show. He's in the right place to get diagnosed quickly.

Best wishes,

Chris

User
Posted 06 Oct 2019 at 22:13

Thank you for the reply, it really put things into context for me and I’m going to try not to worry while they investigate further.   I’ll update when we hear more 🙂

User
Posted 12 Oct 2019 at 12:26

Just posting a follow up, my dad was diagnosed with advanced prostate cancer, it’s in a few bones around the pelvic bone which he fractured, they did another bone scan yesterday of his upper body to check if anything there is affected and we are just waiting for the results from that. They also took 12 biopsies from his prostate yesterday, but they already started him on hormone therapy the day before. Hopefully he will respond well to the treatment and I’m hoping the side effects aren’t too bad. He’s still in the hospital but will be coming home tomorrow for 6 days. 

User
Posted 12 Oct 2019 at 17:36

Originally Posted by: Online Community Member
The doctor sent him for blood tests which came back with a PSA of 10.6

His prostate has been enlarged for a while, 8-10 years and he has to take one pill a day for it

A bit late to mention now, but if he's on Proscar, you need to double his PSA test results to get the figure for risk assessment.

User
Posted 12 Oct 2019 at 21:38

Thanks Andy, yes I think that’s the one he’s on. His PSA is now 66, it’s gone up quite a bit since the fracture. No side effects so far from the hormone therapy but I’m not sure if it takes a while to get into the system fully. He had another hormone treatment today so he’s had 3 injections so far. 

User
Posted 13 Oct 2019 at 07:10

I can't work out what hormone therapy that is. Injections for the common ones are usually 3 months apart (sometimes 1 month initially), but you start with a course of daily tablets first for a few weeks (50mg bicalutamide, which won't affect PSA much) with the first injection part way through this course of tablets. Alternatively, daily tablets (150mg bicalutamide).

Do you know what hormone therapy drug he's on?

PSA would usually start falling quite quickly, but takes 3-6 months to bottom out.

I've no idea, but I wouldn't be surprised if a bone fracture at a met might generate a large spike in PSA levels. Also, PSA would probably double if they take him off proscar.

User
Posted 13 Oct 2019 at 12:53
Unless he is on Suprefact (an injection 3 times a day for 7 days) I think she means he has had 3 tablets OR the injections are for something else entirely!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Oct 2019 at 01:44

He said the only pills he's been given is zomorph for pain. I’ll ask him to confirm which hormone therapy they are giving him, I thought it was strange too that they gave him another injection the next day because I had read on here they were quite far apart.

 

They’re giving them in his abdomen, it makes his skin very red and it feels like it forms a hard area beneath the injection site.

 

They offered him chemo today but he’s going to try MMS first, when my mum had recurring intra abdominal sepsis it cured her infection after she was sent home to die, she’d been on IV antibiotics and pills for 10 months but they stopped them all because her liver was failing and the infection has mutated to the most deadly form of E.coli. The MMS cured the infection within about 2 weeks but also had a big impact on her tumours caused by stage 4 colon cancer, so he wants to give that a try to see if it might help. 

User
Posted 14 Oct 2019 at 10:40

Best to check exactly what injections he has had. He may be on a trial of a new hormone treatment but usually, they give patients time to consider the implications of trials before starting. The monthly or three monthly hormone injections can be given into the stomach and some can be felt as they are a sort of capsule under the skin. But not given as three injections in three days.

The most common daily injection into the stomach is to prevent blood clots. 

Edited by member 14 Oct 2019 at 10:52  | Reason: Not specified

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

User
Posted 14 Oct 2019 at 12:25

He just checked with them and the hormone injections he’s receiving in the hospital are called Degarilex, they’ve told him he’ll be on a different one at home and that will be Prostap. I haven’t heard of Degarilex before does anyone have experience with that? 

User
Posted 14 Oct 2019 at 14:05

You usually only have two injections of Degarelix and then it goes to monthly injections - the advantage is
a) it can get a man to below castrate level in two to three days (much quicker than the other HTs)
b) there is no tumour flare with Degarelix so the man doesn't need to also take tablets in the first couple of weeks.

Your dad will need to clarify with the GP practice how the monthly injection arrangements will work ... some GP practices arrange the dates (it is important that the injection is never more than 2 or 3 days early or late), order in the injection and then give it. Others will require the patient to request a repeat prescription each month and collect the injection from a pharmacy to take to the appointment with him. Occasionally, a patient has to go to the hospital each month because their GP practice doesn't offer hormone injections.

The side effects are listed here
https://www.macmillan.org.uk/information-and-support/treating/hormonal-therapies/individual-hormonal-therapies/degarelix.html#319017 

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

User
Posted 15 Oct 2019 at 01:22

Thank you so much for the detailed info Lyn! The nurse told him he could request from his GP to stay on the same hormone treatment when he’s at home instead of switching to a different one. He got out of the hospital tonight, still not sure what his biopsy results were or his upper body bone scan but hopefully we’ll find out soon. They’re leaving the fracture in his pelvis as they said surgery would be too risky right now. 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK