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If it’s in the bones, what does it feel like?

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User
Posted 01 Apr 2023 at 13:46

Hi all,

I’m waiting for my bone scan results appointment which is this coming Thursday but I’m becoming increasingly worried that my locally advanced may have already moved to my bones. 


I’ve had a niggling pain underneath my lowest left rib for going on 6 months now. I have some digestive issues that are as yet undiagnosed and I do suffer from abdominal pain in various “moving” places but this one pain on or under the left ribs is always in the same place and happens on and off all day, every day. 
To be honest, a lot of the time, it does feel like a soft tissue problem but as I’m waiting for the bone scan results I’m stating to question everything I used to think! 
It feels like something is being “nipped” or squashed when I am in certain positions. Lying on my left side is mostly fine but lying on my right it feels like something is pulling downwards from my left side. If I lay on my back I can feel it all the time, not excruciating but definitely uncomfortable..and all I can say is it feels odd and wrong. If I am standing however, there is no pain at all and I can’t even really feel it. 
I do also have hip and back pain but I’ve had pain there for years now and they have mostly been due to psoriatic arthritis…I think and hope. 

If the cancer does spread to the bones, what does it feel like? 
Does it come and go or change depending on body position?

I guess only the bone scan will be able to say but if it’s inconclusive should I ask for a PET scan? Is that more accurate than a CT bone scan?

In my first diagnosis appointment the consultant I saw said straight off that he was convinced it will not have spread to my bones as my Gleason is only a 3+3 after biopsy. He also said they were not absolutely sure that it has breached the capsule, from the MRI pictures, but to be safe they were going to treat it as locally advanced. At the time (last week/Wednesday) I didn’t know anything about PCa so have been reading and learning all that I can since. 
For some reason I can feel myself resigning to the fact that it has spread as this 6 months pain in my bottom left rib area is like nothing that I’ve felt before. I could just be paranoid but I’m fast becoming the kind of person that likes to know as much as possible about something before it’s confirmed.
That’s happened since walking into the consultants office and getting the “I’m afraid to say…” talk. 
Sorry if I’m waffling a bit, just nervous 😩 

Thank you and take care

Greg. 

User
Posted 02 Apr 2023 at 22:15

Originally Posted by: Online Community Member
I have extensive skeletal mets and it is interesting as I do have significant pain but not all over the skeleton and generally as has been highlighted just at joints (Hips and shoulders in particular) in my case in the centre of my spine. The spinal pain is a very warm nerve type pain, it is hard to describe but it is unlike the pain you describe. Other pain is similar to the type of pain you would have with wear and tear. I haven’t got pain in the way you describe it but as again is highlighted everyone has a very unique experience of pain so nothing is certain until the bone scan is interpreted. I do hope you have no spread to the bones and I think your consultant is probably fairly sure it hasn’t given your initial scores. Try not to worry too much and the best of luck to you.

Best wishes

Michael

 

Hey Michael,

I hope and I'm sure that Greg understands, but I just want to jump in here and doff my cap. This kind of post offers so much to so many. A detailed understanding with the warmest wishing for others. 

Special mate.

Special.

Jamie

User
Posted 04 Apr 2023 at 05:11
Hi Jamie and Greg. Kind of you to say so. I do think that sharing experiences, personal and observed through living with partners, has so much to offer those who are new to this disease. One thing my oncologist highlighted was that extensive or progressive spread to the bones can bring a significant burden of pain and complications requiring clinical and pain management by the MDT. Again though this would be determined by the location of the mets and in particular the involvement of nerves and joints. Of course ensuring this horrible disease doesn’t escape from the prostate and cause these issues is the key.

I still have high hopes you have no spread to bones Greg. Take care and, as before, sending positive thoughts to you. I hope you are well Jamie.

Cheers

Michael

User
Posted 01 Apr 2023 at 15:10
Generally, bone mets don't cause any pain unless they are at major joints such as the hip or are big enough to press on a nerve. Some treatments can make bone mets hurt but that doesn't apply to you at this stage.

Worth noting that it is possible to have bone or soft tissue mets without being T3 - the two things are unrelated. Cancer spreads locally by escaping the gland and creeping into nearby structures such as the bladder, bowel or diaphragm. Cancer metastasises through the blood or lymphatic system. So it is possible to have a totally contained T2a and still have mets.

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

User
Posted 01 Apr 2023 at 15:19

I recall being extremely anxious between the bone scan and getting the results, ( not helped by misplaced Googling). On meeting the consultant the first thing they said was that the scan was clear. I was heartened by the fact they said they looked most carefully.

Pretty sure they will give your scan the detailed study too.

Good luck for that appointment 

P 

 

User
Posted 01 Apr 2023 at 15:52

Hi

I have bone mets...What does it feel like?hrmmm that a toughy...last x-ray showed spread to shoulders and back,I have bone ache from tip of toes to finger tips,some I put down to my condition,some the treatment(enzalutamide)some down to my age(53)certain aches are more intense than others and can pop up any where but mainly where the x-rays and scans have showed the hotshots,tuma flares,growing pains,Skelton ache or as I call it my body scaffold moving,I sleep well not on pain killers YET and try not to do to much as I pay the price in the evening,I feel a lot can do with mind over matter,as the first niggle you feel you put it down to the cancer but that may not always be the case.hope this helps a little.

Regards phil

User
Posted 01 Apr 2023 at 18:22

Arthritis can also show up on bone scans, but that will be on the end surface of bones where they wear. Bone mets tend not to be there.

Broken bones which have healed in last 12 months may also show up, so they'll ask you if you think you broke any bones recently. The bone scan shows bone which is growing or healing. That happens where there are mets, but also for other reasons which the radiographer well knows.

The bone scan images are very poor resolution. If they identify one or two questionable mets, they'll X-ray or CT scan them to get better detail.

Just like when someone mentions nits and everyone immediately starts itching, when you have suspected cancer, every pain immediately becomes a met, which of course it isn't likely to be.

User
Posted 01 Apr 2023 at 19:49

I have the same paranoia - as I keep telling my GP … at 55 I’m sure I shouldn't feel like this. Remember when you were a kid and 30 seemed ancient. Then in your twenties, 50 seemed even more ancient?

For me its ankles, right hip, lower back - been thru’ various osteo/Physio/CT/MRI loops and nothing conclusive apart from a slight tear in hip labrum and a 10% anterolisthesis L5/S1. So its probably a mix of things, mostly age related and payback for all the silly or active things you did long ago. Your GP doesn't take ownership of you as a case study (take some paracetamol and ibuprofen, come back in a month) and each health service faction only considers their particular field. So if you want overall resolution I would say prepare for a long hard slog, or just accept it.

Some days it truly wears you down and you gotta stay positive. It ain’t no fun getting old.

User
Posted 01 Apr 2023 at 21:04

Thats a horror story and makes my aches and pains pale into insignificance. You hang in there buddy! 

User
Posted 02 Apr 2023 at 02:13
I have extensive skeletal mets and it is interesting as I do have significant pain but not all over the skeleton and generally as has been highlighted just at joints (Hips and shoulders in particular) in my case in the centre of my spine. The spinal pain is a very warm nerve type pain, it is hard to describe but it is unlike the pain you describe. Other pain is similar to the type of pain you would have with wear and tear. I haven’t got pain in the way you describe it but as again is highlighted everyone has a very unique experience of pain so nothing is certain until the bone scan is interpreted. I do hope you have no spread to the bones and I think your consultant is probably fairly sure it hasn’t given your initial scores. Try not to worry too much and the best of luck to you.

Best wishes

Michael

User
Posted 02 Apr 2023 at 09:55

Hi Greg, thank you. I wish you well and fingers crossed your bone scan is clear.  I am hopeful for you that it is. 

Take care 

M 

User
Posted 02 Apr 2023 at 22:26

Absolutely Jamie, 

It was outstanding Michael, and very heartwarming, thank you so much. 

Greg. 

Show Most Thanked Posts
User
Posted 01 Apr 2023 at 15:10
Generally, bone mets don't cause any pain unless they are at major joints such as the hip or are big enough to press on a nerve. Some treatments can make bone mets hurt but that doesn't apply to you at this stage.

Worth noting that it is possible to have bone or soft tissue mets without being T3 - the two things are unrelated. Cancer spreads locally by escaping the gland and creeping into nearby structures such as the bladder, bowel or diaphragm. Cancer metastasises through the blood or lymphatic system. So it is possible to have a totally contained T2a and still have mets.

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

User
Posted 01 Apr 2023 at 15:19

I recall being extremely anxious between the bone scan and getting the results, ( not helped by misplaced Googling). On meeting the consultant the first thing they said was that the scan was clear. I was heartened by the fact they said they looked most carefully.

Pretty sure they will give your scan the detailed study too.

Good luck for that appointment 

P 

 

User
Posted 01 Apr 2023 at 15:46

Thank you Lyn

That’s really interesting. I wasn’t aware of the fact a T2 could met. 
I have a GP appointment before my hospital appointment next week so I will discuss with him again. 
I’ve just reached for my phone to post here and the pain was shooting and quite severe. There is a condition that comes along with psoriatic arthritis called costochondritis which is inflammation of the cartilage between the ribs. For years now I’ve always put every pain down to my arthritis and there’s been so many pains that I lost count. 
I suppose as I’m in limbo until Thursday my paranoia is kicking into overdrive. 

I did mention to one of the consultants that I have an autoimmune arthritis and asked if it would cloud the results, he said he didn’t think it would. I suppose time will tell. 
Thank you again

Greg. 

User
Posted 01 Apr 2023 at 15:52

Hi

I have bone mets...What does it feel like?hrmmm that a toughy...last x-ray showed spread to shoulders and back,I have bone ache from tip of toes to finger tips,some I put down to my condition,some the treatment(enzalutamide)some down to my age(53)certain aches are more intense than others and can pop up any where but mainly where the x-rays and scans have showed the hotshots,tuma flares,growing pains,Skelton ache or as I call it my body scaffold moving,I sleep well not on pain killers YET and try not to do to much as I pay the price in the evening,I feel a lot can do with mind over matter,as the first niggle you feel you put it down to the cancer but that may not always be the case.hope this helps a little.

Regards phil

User
Posted 01 Apr 2023 at 15:52

Thank you Pawmark

The wait is killing me. I’m trying not to think about it but it’s difficult. 
As I have arthritis I hope they will look closely at the scans. Rheumatology told me that they should be able to tell the difference between my arthritis damage and Met PCa. I guess arthritis will show in the joints and any cancer could show in the bone itself?
I’m just sick of thinking of it…

Thank you

Greg. 

User
Posted 01 Apr 2023 at 15:57

Thank you Phil and I’m so sorry you’re going through what you are going through. 
I was worried I would sound like a moaning wimp when I posted this conversation and I’m sincerely sorry if I upset anybody who actually does have bone mets. 
I am being very paranoid and I need to slow myself down, it just really helps to talk it out on this great community. 
Thank you for telling me about your experiences. 
Take care

Greg. 

User
Posted 01 Apr 2023 at 18:22

Arthritis can also show up on bone scans, but that will be on the end surface of bones where they wear. Bone mets tend not to be there.

Broken bones which have healed in last 12 months may also show up, so they'll ask you if you think you broke any bones recently. The bone scan shows bone which is growing or healing. That happens where there are mets, but also for other reasons which the radiographer well knows.

The bone scan images are very poor resolution. If they identify one or two questionable mets, they'll X-ray or CT scan them to get better detail.

Just like when someone mentions nits and everyone immediately starts itching, when you have suspected cancer, every pain immediately becomes a met, which of course it isn't likely to be.

User
Posted 01 Apr 2023 at 18:40

Thanks Andy

The urologist did say that the arthritis shouldn’t cloud the picture too much so I’m hoping it’ll be fine. 
I fell off my bike a couple of years ago and came straight down on my left ribs, slipped on mud and it happened so quickly I didn’t get a chance to put my arm out. Probably would have broken my wrist if I did though. 
I’m hoping it’s maybe just something to do with that or my psoriatic arthritis. 
You’re right, I am just being paranoid I’m sure, this week is going to go so slowly I bet. 
Thank you

Greg

User
Posted 01 Apr 2023 at 19:49

I have the same paranoia - as I keep telling my GP … at 55 I’m sure I shouldn't feel like this. Remember when you were a kid and 30 seemed ancient. Then in your twenties, 50 seemed even more ancient?

For me its ankles, right hip, lower back - been thru’ various osteo/Physio/CT/MRI loops and nothing conclusive apart from a slight tear in hip labrum and a 10% anterolisthesis L5/S1. So its probably a mix of things, mostly age related and payback for all the silly or active things you did long ago. Your GP doesn't take ownership of you as a case study (take some paracetamol and ibuprofen, come back in a month) and each health service faction only considers their particular field. So if you want overall resolution I would say prepare for a long hard slog, or just accept it.

Some days it truly wears you down and you gotta stay positive. It ain’t no fun getting old.

User
Posted 01 Apr 2023 at 20:46

Originally Posted by: Online Community Member

Some days it truly wears you down and you gotta stay positive. It ain’t no fun getting old.

I totally agree with all you say Chippers. 
I’ve had a strange time these last couple of years. I’ve had psoriasis for about 25 years and I developed psoriatic arthritis in 2014. It was manageable though, with my biological injections from the hospital. 
When covid struck I was shielding as I was immunosupressed because of the arthritis meds so was clinically extremely vulnerable to covid. 
In Aug 21 I lost my managerial job of 31 years because they wanted me back in the office but with no safeguards in place. I couldn’t so do that so they “offered” a demotion! I wouldn’t accept so was forced to resign in complete shock. So angry and upset I can’t even put it into words. 
Then in Jan 22 I got an H-pylori infection so was on 7 different antibiotics. 
Then I got balanitis. 
Then I got suspected prostatitis, although that could have been the start of my PCa symptoms. 
Then I had severe stomach issues and had a calprotectin test result of 547. GP was astonished as over 200 means severe inflammation. So I had to go for an urgent colonoscopy. Nothing serious found at the time. 
Then I had a gastroscopy to try find the inflammation, it showed I had an 8cm hiatus hernia. Got referred to gastroenterology but still waiting for appointment. 
Then I developed some unusual white lumps in the back of my throat. Swabs came back as normal so not bacterial, could be a side effect of arthritis meds so been referred to ENT. 
Then prostate symptoms started to show again so started on investigations and now here I am with PCa. 

Last time I was in with my GP was just before official PCa diagnosis and I said to him, what else can possibly go wrong, then I got my diagnosis. Wish I hadn’t said anything to him now. 

All in all I feel absolutely battered after the past 18 months or so and I really don’t think I can take much more. ☹️

So yeah, I agree it does get you down and getting old is an absolute bast*rd. I guess it’s better than the alternative though. 

Just trying to keep going best I can. 

Look after yourself 

Cheers

Greg. 

User
Posted 01 Apr 2023 at 21:04

Thats a horror story and makes my aches and pains pale into insignificance. You hang in there buddy! 

User
Posted 01 Apr 2023 at 21:08

Cheers Mark. You too 😊👍

User
Posted 02 Apr 2023 at 02:13
I have extensive skeletal mets and it is interesting as I do have significant pain but not all over the skeleton and generally as has been highlighted just at joints (Hips and shoulders in particular) in my case in the centre of my spine. The spinal pain is a very warm nerve type pain, it is hard to describe but it is unlike the pain you describe. Other pain is similar to the type of pain you would have with wear and tear. I haven’t got pain in the way you describe it but as again is highlighted everyone has a very unique experience of pain so nothing is certain until the bone scan is interpreted. I do hope you have no spread to the bones and I think your consultant is probably fairly sure it hasn’t given your initial scores. Try not to worry too much and the best of luck to you.

Best wishes

Michael

User
Posted 02 Apr 2023 at 09:54

Thank you for sharing your experience Michael

I’m sorry that your having to go through that. 

I woke this morning and every part of me is hurting, it seems, hands, arms, neck, back, hips, knees and feet, but I think that’ll be down to my psoriatic arthritis. I’m hoping urology and rheumatology can work something out between them. 

Thank you again Michael and take care

Greg. 

User
Posted 02 Apr 2023 at 09:55

Hi Greg, thank you. I wish you well and fingers crossed your bone scan is clear.  I am hopeful for you that it is. 

Take care 

M 

User
Posted 02 Apr 2023 at 22:15

Originally Posted by: Online Community Member
I have extensive skeletal mets and it is interesting as I do have significant pain but not all over the skeleton and generally as has been highlighted just at joints (Hips and shoulders in particular) in my case in the centre of my spine. The spinal pain is a very warm nerve type pain, it is hard to describe but it is unlike the pain you describe. Other pain is similar to the type of pain you would have with wear and tear. I haven’t got pain in the way you describe it but as again is highlighted everyone has a very unique experience of pain so nothing is certain until the bone scan is interpreted. I do hope you have no spread to the bones and I think your consultant is probably fairly sure it hasn’t given your initial scores. Try not to worry too much and the best of luck to you.

Best wishes

Michael

 

Hey Michael,

I hope and I'm sure that Greg understands, but I just want to jump in here and doff my cap. This kind of post offers so much to so many. A detailed understanding with the warmest wishing for others. 

Special mate.

Special.

Jamie

User
Posted 02 Apr 2023 at 22:26

Absolutely Jamie, 

It was outstanding Michael, and very heartwarming, thank you so much. 

Greg. 

User
Posted 04 Apr 2023 at 05:11
Hi Jamie and Greg. Kind of you to say so. I do think that sharing experiences, personal and observed through living with partners, has so much to offer those who are new to this disease. One thing my oncologist highlighted was that extensive or progressive spread to the bones can bring a significant burden of pain and complications requiring clinical and pain management by the MDT. Again though this would be determined by the location of the mets and in particular the involvement of nerves and joints. Of course ensuring this horrible disease doesn’t escape from the prostate and cause these issues is the key.

I still have high hopes you have no spread to bones Greg. Take care and, as before, sending positive thoughts to you. I hope you are well Jamie.

Cheers

Michael

User
Posted 04 Apr 2023 at 09:54

Thank you Michael

You are an absolute gentleman sir. 

Take care and best wishes

Greg. 

 
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