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Topic: Bone mets- what does the pain feel like?

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Feb 7, 2009 10:26PM

jejarvis wrote:

Hi, I was dx'd in jan 2005 with IDC stage 2, went through chemo and rads after lumpectomy.  In the last 6 months-8 months or more I have had come and go left shoulder pain that sometimes responds to massage, accupuncture, NSAIDS, but not very well.  I have had bone scans and MRI about a year ago that were good.  I've been writing off this shoulder pain as muscle, overuse, rotator cuff etc etc.  It does not seem to get better with rest or get worse with heavy exercise or lifting.  Sometimes it just goes away for a while and sometimes it comes back for no reason.  The pain feels like burning all across my upper shoulder, middle of my shoulder blade, and one point under my arm near the shoulder blade.  Now I feel a very tender area on the left front lowest rib area which may be a bruise.  I'm starting to freak myself out, and I hope someone will tell me about what their pain feels like.  I do have an appointment with my oncologist in 2 weeks, and I'm sure that she will order a bone scan.  I did have all over bone pain with neulasta, so I know what that feels like and this is not like that...  This pain feels like it is in the muscle, but it does not get better much with massage.  It goes away completely with percocet (which I took for a couple days for a foot injury), but ibuprofen does not help it.   The pain also completely went away when we went to Hawaii recently with the warmth. 

I may be worrying for nothing, but I can't find a good description of bone pain on the web.  Anyone else have this burning???  Also, wondering what other tests to make sure to ask about at my onc appointment...

-- Julie

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Feb 7, 2009 11:27PM LuAnnH wrote:

Julie, it can just be so many things.  If you are really worried, have your onc run the bone scan or the PET/CT scan.  It is possible it is just a bad bone injury that causes lasting pain.  I can't say I ever felt a burning pain from my bone mets but everyone feels something different.  Please have your onc run the proper scans to figure this out.

LuAnn --

Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Feb 8, 2009 12:33AM rooni wrote:

Julie, better  make sure you address it with your onc. It could be nothing but dont let it go. At least for your own peace of mind.

Rusty

Rusty

Dx 7/7/2008, IDC, 2cm, Stage IV, Grade 3, 12/18 nodes, mets, ER+/PR+, HER2+
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Feb 8, 2009 02:09AM jejarvis wrote:

Yes, I plan to pursue this.  I would rather know than not know if it is anything.  Just has been nagging me and I've tried all the things I can:  Physical Therapy, chiropractic, accupuncture, antiinflammatories, percocet (which does take it away temporarily). Excercise, rest, etc. etc.  It's going on too long to not get a scan.  Also wonder if it is something to do with Aromasin, however, I was off Aromasin for 1-2 months and it did not get any better or worse.  It could be just a weird overuse injury that I haven't realized what ergonomics (or lack thereof) is aggravating it...

Julie "Here comes the sun!"

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Feb 8, 2009 02:19AM curlieqs wrote:

I agree with LuAnn, get it checked out girl! I too did not have the burning pain, it was a relentless harsh ache that would not go away with Chiro, massage, physical therapy, or NSAIDS. The pain was like no other I ever had. But like LuAnn says, it is different for everyone. I know some people had no pain. Please get it checked out, and I really hope it is not mets. Keep us posted please, OK?

(((((((((Julie))))))))))

Bone and brain mets. It's not the amount of time served, it's what you do with it.

Dx 7/10/2008, IDC, Stage IV, mets, ER+/PR-, HER2-
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Feb 8, 2009 04:12AM ElaineD wrote:

No burning pain here either. It's worth mentioning it though-I think we tend to assume that any ache and pain will be related to a spread of cancer-most aren't and are simply aches and pains, but it's worth having it checked, for your own peace of mind. Since it cleared in warmer climates, coould it not be arthritic type of pain, which often responds well to warmth?

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Feb 10, 2009 06:48PM 3boys4me wrote:

I have this same question.  I hurt all the time - lower back, legs, arms, neck and shoulders - but now my torso.  I'm on tamoxifen so am wondering if that's causing the pain or is it something else??  I finally went to my onc yesterday to try to go off the tamoxifen to see it that is what is causing the pain.  He's telling me to keep on the meds and he will sending me for a bone scan.  It's just scary - I don't think it's anything, but would rather get it checked out than worry...

** Live Well * Laugh Often * Love Much **

Dx 2/2007, IDC, 5cm, Stage IIb, Grade 2, 6/14 nodes, ER+/PR+, HER2-
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Feb 11, 2009 11:59AM jejarvis wrote:

Well, right after I was done with chemo (I had FEC, the Taxotere) in late 2005,I had miserable all over aching of muscles and bones, it felt like I was sore from really working out at the gym too much.  This nagged me for almost a year.  I was on Tamoxifen, and I thought it was tamoxifen causing the aches, so I went off it for 1-2 months with no change in this generalized pain.  I had every test imaginable to rule out any central spinal cord compression, bone mets, brain mets, full neuro workup including nerve conduction studies-- all were clear.  My oncologist kept telling me it was just after effects of the chemo and that it would eventually stop... and it did-- all of a sudden it was gone... but it was probably almost a year from the last dose of taxotere.  Since then I found an accupuncturist that had his explanation of the all over (mostly muscle) pain:  he said the chemo made the intracellular fluids (chi) stagnant and that when the tissues finally healed, then the "chi" circulation could clear the back up.  Now, I'm in the medical field, and was a real skeptic about accupuncture to begin with.  However, this explanation made sense to me and explained my muscle pain.  I wish that I would have known about and tried accupuncture to see if it would have helped when I had that pain.  Maybe that would help you... how long has it been since your chemo?

But back to my shoulder pain... this is different.  It is very localized, and it feels like any muscle pain is just tension that is gaurding the deeper painful area, because massage, muscle relaxers, etc don't really get rid of the deeper pain.  It's been going on for too long and it could very likely be something like bursitis, but I will definitely have my oncologist order the appropriate tests to determine whether it is due to cancer.  It will ease my mind or let me know the real cause and get on to dealing with it.  Thanks for everyone's input.

Julie "Here comes the sun!"

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Oct 30, 2009 02:38AM jasonborn68 wrote:

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Oct 30, 2009 02:55AM Fidelia wrote:

Hi all - I had pain very similar to jejarvis' description for about 4 months - it got so bad that it felt as though my arm would separate from my shoulder if I did something as simple as digging in the garden with a hand trowel - to relieve anxiety!!! Sadly - after about 4 months of increasing pain - a skin met popped up on my back - with this disease I have found it doesn't leave you wondering for long!!! I have also found that I am in constant pain now having 'upgraded' from tamox after this second recurrence - so I now only get concerned if there is a focal pain for more than 2 weeks - 'burning' is a sensation I do associate with mets as mine seem to occur very close to nerves - dammit - but so far have responded to AIs...definitely get it checked as it may be nothing more than over-sensitised nerves or it may be a sign you need to switch to something else for a while - hoping it is the former and you get back to Hawaii - which sounds like a great pain reliever Emotions
Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Oct 30, 2009 05:23AM kmmd wrote:

I reported the jasonborn post, repeat of the above with the links for promoting buying meds in someone for whom that was their only post here

www.youtube.com/watch?v=vrpJD2... Keep breathing is my new motto. Kate

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Oct 30, 2009 08:39AM JeninMichigan wrote:

I had mets to several upper right ribs and left hip.  I felt absolutely no pain in either place.  Since completing treatment I have had alot of various bone pain and joint pain and muscle pain.  Especially when I get out of bed in the morning.  I have also had three pet scans six months apart that all say I am cancer free and the bone mets were completely resolved.  I don't know where all this bone, joint and muscle pain comes from.  I am on Tamoxifen, Herceptin, Tykerb and Aredia so I guess it is one or all of those causing the problem.    I think it is worthy of getting it checked out.  Hopefully it is nothing.  Somehow for me with the peace of mind that it is not cancer, I can tolerate the pain so much better.   

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Oct 30, 2009 12:54PM cmhartley wrote:

jejarvis,

Definitely talk with your onc and follow through on this.  I had nagging neck pain that I "blew off" because I had this problem in the past and most recently shoulder pain (near shoulder blade) that I almost blew off because it came and went.  I had always heard that if it was bone mets you would know it...unrelenting, severe pain.  Well, thank goodness my oncologist ordered a PET scan because I was just diagnosed with extensive bone mets.  I certainly don't want to scare you I just think we all need to be vigilant.  I almost decided not to get my PET scan.  I wouldn't have called if it wasn't for the PET imaging place calling me to set up the appt.  Be your own advocate and my prayers are with you.  

Original Diagnosis: 3/08/2005 Stage IIb IDC, ER+, PR-, HER2-, 3/11 nodes positive; Recurrence 10/22/2009 extensive bone mets; 11/20/2010 diffuse liver mets; 1/2013: grade 4 liver cirrhosis, portal hypertension and esophageal varicies

Dx 10/22/2009, IDC, 3cm, Stage IV, Grade 2, 3/11 nodes, mets, ER+/PR-, HER2-Chemotherapy 04/05/2005 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 10/04/2005 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Hormonal Therapy 09/23/2009 TamoxifenHormonal Therapy 01/15/2010 FemaraHormonal Therapy 03/01/2010 AromasinTargeted Therapy 05/15/2010 AvastinChemotherapy 05/20/2010 TaxolChemotherapy 03/22/2011 AbraxaneChemotherapy 07/01/2012 XelodaChemotherapy 02/13/2013 HalavenChemotherapy 12/06/2013 GemzarRadiation Therapy 01/02/2014 External
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Oct 30, 2009 01:34PM AnneN wrote:

I had no idea I had bone mets until the staging PET/CT my onc ordered found them. I had four of them - 2 in spine, one in collarbone, one in hip. (One of the spine ones has since disappeared after treatment.)

I have never felt any pain from the one in my hip. The ones in my spine and collarbone don't cause any pain unless I overexert the muscles near them. There was also a period of 2 weeks when I first started my treatment when I had a cancer "flare" from the Tamoxifen that caused serious back pain - I had to be helped in and out of bed. But I could manage it with Tylenol, and after the flare subsided, no more pain unless I overdo it.

I have never had the burning sensation some of you describe. For me it just feels like any old backache - I wouldn't have known it was mets without the PET/CT.

I agree with everybody else - get it checked out! 

Faslodex/Zometa/complementary supplements. Mastectomy with immediate DIEP at NOLA on 12/15/10.

Dx 3/20/2009, IDC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Oct 30, 2009 05:52PM marshakb wrote:

I had nerve pain with my femur bone mets. No one thought it was cancer related. I felt like your garden variety sciatic nerve. Went to pcp, chiropractor, massage therapy, etc. Had temporary relief but that is all. What alot of people don't understand is you can have NO pain from the actual tumor but it makes that bone weak and you get related pain, like my sciatic or over use of a muscle/tendon pain. It WAS the sciatic nerve that caused the pain because it was exposed and rubbing against the crumpling bone. I'm not trying to scare you but pain lasting that long needs to be checked out with a PET/CT scan. Praying it is nothing!

I'm not dead yet!

Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Oct 30, 2009 06:00PM, edited Oct 30, 2009 06:01PM by ElaineD

The question was asked in February, and the poster hasn't been back since-think we can assume it's been dealt with already!

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Oct 30, 2009 08:07PM jejarvis wrote:

Hey, sorry everyone for not posting an update.  I did get an MRI and it was negative for any bony problems.  I have been having a massage therapist really work on the area and it is helping-- it  is not what I would call pain now, just tightness with overuse.  I think it is scar tissue from the radiation plus overuse.  It does feel much better, and I feel less worried that it is mets.  However, it is always at the back of my mind and I try not to ignore pains, now.  I have another follow up visit coming up with my onc in a month and I want to push her for some more imaging of the area.  Of a more concerning nature, she found an area in the other breast that she can feel a texture change (I can't) and I had just had a negative MRI.  If she can still feel it next visit, then she will order an ultrasound.  Just when you think this disease is not there, it reminds you that it can recur at any time.  Thanks for all the words of advice and again, I apologize for not posting an update-- just get busy!! And also I try not to hang out on the BC sites too much.

Julie

Julie "Here comes the sun!"

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Nov 1, 2009 11:55PM razerstam1 wrote:

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Nov 2, 2009 06:02AM GramE wrote:

razerstam, You have imbedded advertisements in  your post -- this is NOT allowed.   I have reported your post.   

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May 12, 2013 03:08PM RunToTheMountains wrote:

I am sorry to be a bother. But can someone please tell me again what bone pain feels like? I am not diagnosed yet but they keep tossing around pagets bc.  I did not do anything for a while about my nipple changes thus I am afraid it is advanced.  It has been over 3 weeks and mri, ultrasound, biopsy (which was messed up) and I still haven't gotten answers. I have a surgical consult tomorrow. But I am having a lot of pain in my arms, elbow, low back that I have never had before. I am scared. Everyone keeps telling me to relax. But I will not relax until I find out for sure. In the mean time if someone has metz to bones could they please describe this to me? I have been hanging on a thread since this all started.

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May 12, 2013 03:59PM exbrnxgrl wrote:

Waiting for results is very hard and I would be foolish to tell you not to worry because that's quite difficult to do. There is no one definitive symptom of bone mets. I, for instance, had no symptoms or pain. I hope you get some answers very soon.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur

Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-Surgery 09/07/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Breast implants (permanent) (Both)Radiation Therapy 11/15/2011 ExternalHormonal Therapy 11/21/2011 Arimidex
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May 12, 2013 04:19PM ibcmets wrote:

Bone mets occur most of the time in the spine or femur.  You will have back pain that won't go away.  If you are on an aromatase inhibitors for being ER+, you can also get bone & joint pain.  It's like a deeper pain that does not affect the muscles (not sure how to describe).  Note shoulder and arm pain can be from frozen shoulder and not cancer.  I also had this after chemo.

Have tests done requested by your oncologists.

Terri

6/2009: ibc,stage IV bone mets, ER/PR+, Her2-, 1/2011: BMX/Recon, Femara & Zometa;10/13 Aromasin/Afinitor

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May 12, 2013 11:05PM Rosevalley wrote:

Pain is such an interesting topic since our brains decode what we feel and attach meaning to it. Each person will describe something a little bit differently. prior experiences play into our perceptions too. 

For me the joint pain of arimidex was like ground glass in your joints, just unrelenting aching and pain. I just didn't want to move. Even my accupuncturist tried leaving the needles in and could not get rid of the hip pain. I used to just LOVE my sessions, because Tagasshi could get rid of all the pain after chemo... I slept at times during accupuncture. But 6 months of the joint pain.. whew did me in. I wasn't given any pain relievers. I finally quit the drug and that got rid of the pain.

Neulasta shots were horrid. Like an intense pain from the inside out, everywhere and nowhere specific. Intense... it was doable because you knew it ended after a couple of days.. take the percocet. ugh.. nasty.

In the weeks leading up to my PET scan in April of 2012 I kept feeling this odd tingling sensation in my sternum and different places. I never felt anything like it and didn't know what to make of it. I couldn't decide if it was painful or just wierd. It was bone mets, but I didn't know it at the time. I also had a rib that clicked when I would breathe, but it didn't hurt. Then my other ribs started to ache on the right. That was small fractures, couldn't lay on my right side after a while. All of this annoying, but didn't stop me from activities. Those feelings were all bone mets; they hurt but didn't nail you.

Interestly, once the treatment started the faslodex and zometa made the pain worse not better. It took months of treatment to really feel better. I have one area in my back that when I stand for long periods or sit it just aches like heck and won't stop. Yet the scans say clear.. the pain stays on. Oh well.

To this day when I think of a pain score of 10, I remember splitting the bone in my lower leg as a ten year old. I fell off the edge of a barn roof.I screamed and rocked back and forth on the ground, in just crazy intense pain... off the charts. That is still my "10." To this day nothing hits that level. Four huge gall stones and a "knife in your back" and I would rate that a 9. I have had a couple of crazy painful back injuries and still 9s..8s. Bone pain like a quick long fracture is the worst. I was just frantic I hurt so bad and could hardly pull it together.. crying and gasping. I spent the entire summer on my back... leg up. ugh.

I have heard that bone cancer and bone pain is excruciating. This I can believe.How is it in some cultures a woman is supposed to be silent during birth and in other cultures scream through it all? Is it expectations and patterning, "it will be like this" and you behave accordingly? Like little kids who skin their knee and if they are engaged keep playing, but if Mom is watching... on come the tears!

Dx 1/2/2007, ILC, 6cm+, Stage IIIa, Grade 1, 1/17 nodes, ER+/PR+, HER2-Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2-
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May 12, 2013 11:46PM Tweetyb422 wrote:

I had mets in both hips, only the left side hurt. For me it was like a stabbing pain. It woke me up at night. In the beginning it felt better when I walked but by the time I had my pet scan which was about 2 months from when I first noticed it, it was awful. After rads I currently have very little pain more stiffness now. My shoulder and arm hurt now, I have a pet scan in 2 weeks. I am starting pt this week they think it may be frozen shoulder, I hope so, but I am tired of being in pain.

Dx 3/25/2012, 6cm+, ER+/PR-Dx 2/2013, Stage IV, Grade 3, metsChemotherapy 04/23/2012 Adriamycin, Cytoxan, TaxolChemotherapy 06/18/2012 Adriamycin, Cytoxan, TaxolSurgery 07/31/2012 Mastectomy (Left); Lymph Node Removal (Left)Chemotherapy 08/20/2012 carboplatin, GemzarRadiation Therapy 11/05/2012 ExternalRadiation Therapy 02/25/2013 ExternalSurgery 04/05/2013 Prophylactic Ovary Removal (Both)Chemotherapy 05/01/2013 Xeloda