Bone Mets Thread
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every time I have a pet/Ct scan it's from skull cap to mid thigh
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Hi BevJen,
I've never had a PET scan. They are difficult to get here as there are limited numbers of machines in British Columbia (although they recently installed one locally so that may change). My MO is happy with a combo of CT/bone scans to monitor my situation. And I agree, PET would perhaps tell us more (although not necessarily - if I understand correctly PET is best for 'hot' cancers - mine is slow and lazy which is not a bad problem to have!).
I've had several radiation treatments due to pain/impacts from the bone mets. The first zap was to resolve severe sciatica. It was amazing with almost instantaneous relief. The second zap was for hip pain as I was getting so that I could barely walk on my right hip - this only resulted in a partial response but it was a big improvement. And then another zap to my lower spine for pain in the sacrum/lumbar area. Now I'm in a holding pattern with regards to the skull base mets. There is one particular area of bone called the clivus which seems to be causing some numbness in the right side of my face/jaw. I'm a bit nervous about zapping that one unless I'm fairly certain it's getting worse so am monitoring while I wait to see if Verzenio/Abemaciclib improves things.
I know some ladies have had radiation treatment to zap a single bone met but mine are too widespread for that approach. It's also important to understand that radiation treatment is not without risk of some collateral damage. There is often a pain flare after treatment and the radiation to my hip caused some significant vaginal discomfort. I threw up after the lower spine zap - it nicked my stomach... And apparently the skull base radiation can lead to a sore throat for about a week. All to say.. a balanced approach is required.
JoE777, my bone scans are head to toe but but CT scans are typically chest/abdomen. As my MO pointed out, mets to the cervical spine and skull base are rare (according to the literature, mets to the clivus are exceptionally rare) so they don't scan there in Canada.
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I also had small tumors in both lungs so I suppose there is concern for usual places for metastasis
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I have lobular and have been getting PETs the whole time. At staging I had two CTs that showed some weird bony stuff that didn’t change after chemo or 6 months later. A few lung modules that never changed so were deemed benign. I had two negative bone scans at staging. My Mets showed up 4.5 years later and only PETs since then. My PET initially showed extensive bony Mets which came close to totally resolving on Ibrance and then I progressed after 18 months.
On Afinitor the bony Mets were all “ resolved, reduced or stable” after 4 months. I haven’t had another PET yet since my TMs have been quite predictive. I am at 8 months on Afinitor.
I didn’t get into a big discussion about different kinds of scans with my MO, partly because I am highly allergic to CT dye and the massive amount of steroids I need to have one are miserable. Also I have Kaiser so no insurance pre- auth needed.
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BevJen- I wish I could be of help, but I don't think I will be. I have "Lobular-like features" so said my breast biopsy when had the mastectomy. What does that mean????? I do list as IDC/ILC since that was mentioned in my records. I had a PET on diagnosis that stated "osseous lesion on C2" and "sclerotic" lesions in the thoracic and lumbar spine. My bone scan showed uptake everywhere-- extremities, spine, hips, everywhere. But I have rheumatoid arthritis. So I think the bone scan was not a good test for me. My 3 month CT's --chest, abdomen, pelvis--says "sclerotic" lesions. I do think that bone mets are hard to diagnose and monitor, at least in my case. And my MO seems more concerned about my liver met. She doesn't seem as concerned about the bone ones. I do use Xgeva though. I have a lot of skeletal pain, but my MO has never mentioned the option of radiation.
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i m mahmoud from egypt and i have my mom she is stage 4 and she have ca 15 1550 is very high and i m scary
the doctor says to my mother she will continue in armosin 25 mg and she have some pain in his body and we need to know if she will take some treatement to his pain
you have pain in your body and what is the treatement you taked for this pain thanks
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Since she has breast cancer spread to her bone she may need medication for her bone cancer pain which would be different than for the side effects. For the side effects I took a prescription anti-inflammatory, Celebrex until my insurance thought I didn't need it. Now I take Meloxicam and it doesn't help.
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Depending on where the pain is, she may want to consider radiation treatment. I've had three radiation treatments since being diagnosed to deal with sciatica and pain in my hip/lower back. For the most part is was very helpful and I had a good response.
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Hi all,
for what it's worth I want to share my recent experience dealing with a sudden and acute pain that was located under my left breast.
Of course I got very scared because my left breast is where my original tumor was located and also because I had been free of pain for a very long time.I used to suffer from widespread debilitating pains in my femurs, hips, flanks and arms....but that all changed when I doubled my daily amount of magnesium citrate.
This time I first palpated my breast but I could not feel any hardening, I then started examining the area under my left breast, and I knew I had found the spot when I felt atrocious pain when I put pressure. The pains seemed to stem from the rib cage and the muscles attached to it.
That was three days ago, today I'm completely pain free...so what did I do?
I figured I would start with anti-inflammatories—in case it was just inflammation— by doubling the amount of good quality Omega 3 fish oils I was taking—I also massaged some magnesium oil into the affected area and started wearing a bra day and night, to ensure the weight of my breasts wouldn't add more pressure on whatever muscles were involved...well....it worked! I'm now happily pain free...hopefully these remedies can work for those of you that are tired of taking painkillers.
I'm getting a pet scan in couple weeks and that will shed light on what's really going in that area, but for now I'm not suffering, and isn't one of the stated cause of cancer inflammation?
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Hellou ladies, did anyone had total spondylectomy en block? Removal of totalvertebra where the met is and replacement with titanium cage. Thank you
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Maaaki - I know I've read on here someone had that procedure. Andi maybe? I hope they are along soon to help!
So Ive had two rads sessions and while my right side (the bad side) feels so much stronger/stable and the muscles feel like they are actually engaging, now the left side (where I had the herniated disk three years ago) is acting up and being an asshole. LIke WHY jesus someone give me a break here. This is the side that has been taking all the weight with the crutches for the last three weeks. The last two days I have been 'walking' more due to improved right side, and yesterday I was really motoring along, so muscles are now getting used again that have been off duty for quite some time.
Question:
I know its my L5/S1 area because my left toe is tingling more and I have had neuropathy there since the herniation (there is a bit of disk in the canal at L5 causing some stenosis). I am receiving rads just on the other side of the spine at the SI joint. Could there be some scatter causing some agitation to the nerves? Confluence of factors?
This is all massively frustrating as I just want to be mobile in some manner. I don't even care about the damn cancer at the moment, just get this back sorted!
Frisky - I think I have some magnesium oil in the house, I may try your approach
although perhaps with an SI brace rather than a bra.(Note: next week I have RO and MO and next round of drugs coming up so at least I have an oppty to raise this if it continues, but will try conservative approaches in the meantime)
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I have a couple silly questions. When you all found you had bone Mets....was your pain consistent/constant? Like sitting and standing pain?
Also have any of you had bone Mets NOT show up on a MRI?
Thank you for your answers. Sending a hug to all of you💐
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Hi, Jons girl,
So the jury is still out on whether or not I have or have had bone mets -- long story. The point is this: I've now been told by my MO and by the radiologist that "bone mets are difficult" sometimes to discern on imaging. I'm learning through all of this that different imaging types seem to show up different types of mets. So I would guess that it's possible that bone mets would not be visualized on an MRI, depending upon what area the MRI looked at.
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Apparently these scans are hard to read or, are worthless (you chose). I had a compression fracture on my T10 which cancer invaded. Every Nuc Bone Scan showed it getting worse for almost a year. Finally, my ONC said I should see a Rad because he worried about it breaking.
So apt at Rad. The doc that I went to see examined the Nuc Bone scans. He had a funny look on his face and said he needed to go consult someone. He left the room. He came back and said he HAD THREE radiologists read the bone scan and it was healing bone. Yahoo I thought. But just to be sure he said we needed to do a MRI of my thoracic spine. Well the MRI showed it was not healing bone it was growing cancer. I ended up doing 10 rad treatments. ( also the MRI found mets that the nuclear bone scan had never mentioned)
Now my bone scans never mention T10. Don't read healing/healed met or met is there. It's like it doesn't exist.
I never had pain in my T10 which surprised all the radiologists.
Very confusing. Sorry for being negative.
Hugs to all
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okay folks....the pain around my left breast is back, but is no longer concentrated in one hellish spot, now it’s widespread and the area is also hot...not good....
I applied a lodacaine patch right where it hurts BUT it’s not doing much good...
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Frisky have you caught a virus? Temperature? My son was just telling me that his three mo baby (little CC) has the croup. He said it's a virus in her lungs. He is giving her breathing treatments at home. Poor baby
Are there any well people in US anymore?
My son and wife just bought their dream home but its outside of town surrounded by corn fields. Corn dust. Farmers spraying but nobody listens to me. Their 7 yr old used to have asthma. She hasn't had any issues with it for two years but since they moved into this house (one mo ago) Chloe has been to the ER three times with serious asthma attacks. She on asthma meds and she has to use a nebulizer at home. Corn dust. It gets into your walls and causes mold. I told them move the heck out of there. But they just nod their heads and humor me.
Starting to piss me off. When are people going to wake up and realize our government is allowing practices that are killing us?
Oh God, I'm so sorry. I went right past your issue and into a rant. Forgive me.
I'm praying for you girlfriend. Great Big HUG
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Jons girl - My bone mets have never really hurt. I have back pain but it's from bulging disc and compressed nerve. I don't really know about MRI. I just had one and it did say there were numerous osseous lesions. My scan surprise was having things not show up on CT but show up on nuclear bone scan.
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For Maaaki, my L1 was destroyed by tumor and replaced by a titanium cage. It was actually a five level fusion because rods and screws were added to two vertebrae above and below the site. A long operation, I needed 7 units of blood afterward. The doctor used dental tools to tease the lesion out from where it had wrapped itself.
Was discharged with a brace and walker, got in home PT/OT and took a few months to recover. Physical limitations remain of course however if you consider the alternative...
I spent over two weeks in the hospital because it required several days to get on the surgical schedule. Had to be flat on my back due to the risk of spinal cord damage. The pain came on somewhat rapidly but was first treated as muscle strain until I couldn’t walk. Once a simple x-ray was done, the metastatic diagnosis was evident.
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S3K5, thank you for your suggestion...I’m getting a pet scan in one week that hopefully will shed light on what’s going on in that area and everywhere else.
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Frisky and Jonsgirl - my mets hurt mostly periodically, especially at night, but not all spots hurt.
I had severe pain to pressure under left breast last year - later same thing happened under right breast - and developed a period of being unable to take a deep breath because of hot, stabbing pain in the area. It got better after 2 or 3 weeks. Sometimes came back, treated w ibuprofen and tylenol, limited movement. When I was subsequently diagnosed w MBC, those areas showed lytic lesions along with others all over ribs. 6 months later, there were healing fractures on my ribs at those sites that had hurt the worst. So I believe you dont always feel the mets, and severe pain may be a fracture that is developing. After I had started treatment last year, in 2nd month of treatment, I developed severe sternum pain particularly lying in bed, turning over, that took about 3 months to go away. Bone and CT scans 4 months later showed pathological fracture but luckily no misalignment. The pain is a signal to me but of course not always cancer! E.g. I also have trochanteric bursitis in right hip which comes and goes, gives me thigh pain, but ct scan bone scan and pet show no cancer there.
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Hi all
I was diagnosed in May, but its taken me this long to read reports other than planning scan reports for rads which showed mets. I've started with bone scans and scans dealing with bones and working my way to get the nerve to read the others. I have a question. When mets were found i mentioned pain in my lower back and MO had me do lumbar spine MRI. MRI showed mets, but nuclear bone scan did not show mets there, or in my pelvis, MO told me CT showed mets to pelvis but bone scan doesn't show this either. It seems weird to me bone scan isn't picking up these mets. Which makes me feel uncomfortable. Unfortunately I'm finding reading the reports things were alittle more extensive than I thought...sigh. Is that why they have us do both CT and Bone - not only to check the organs but for things the bone scan doesn't pick up too? 0 -
hi Rabbit! I recently read my seven month old reports too and was taken aback by the extent of bone Mets Really glad I was too chicken to read all that until now. Yikes.
Anyway. I just had a treatment change due to nuclear bone scan showing progression while my CT was stable. This was really confusing to me. A doctor friend told me that blastic lesions show better on bone scan. Lytic lesions tend to show better on mri I plan to ask MO about this when I see her next.
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That makes sense Moomla, I had extensive lytic mets at Dx that didn't show on a bone scan but showed on a PET/CT. I didn't want to believe it since my bone scan was clear, but my next two PET/CTs showed them healing so I had to acknowledge it was true. Sorry about the progression, hope your next treatment works well for you.
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And yet, my extensive mets are all sclerotic and my bone scans look almost normal. It’s puzzling.
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Hello, vlnpr, thank you very much for your info. I am not affected by this lesion in vertebra, but I was thinking about the total spondylectomy due to currative possibility, it worked on my liver two years ago. I already had cyber knife but suv activity after 3 months did not dissapeared only went down to half. I know it is major surgery and my QL is very good now, so may be I wait.
My met was also not really clear on scans for two years what is it, it was osteoplastic lession and did not change for two years so they even described it on mri as endchodroma (benign tumor), but after two years it started to grow and had metabolic activity with osteolytic descrution.
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Maaaki, how much has it grown?I too have a lesion that didn’t change over 2 years and was called benign chondromyxoidfibroma but has recently had increased suv activity bone scan.
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Rabbit and all,
Prior to May 2019, I was scanned and scanned because tumor markers were going up. They found NOTHING. In May of 2019, they found liver mets. No one mentioned bone. I switched MOs and she said -- looks like you might have bone mets too. I was shocked. Nothing had shown up on CT, PET/CT, nuclear bone scan other than what was described as "arthritis." Just had a CT only, and the radiologist said that it he wasn't sure what he was looking at, but then he said "extensive metastasis to spine." So it appears that these things do NOT always show up, or that they are misread or not read or whatever. From May to October, I was only worrying about liver mets. Not the case now.
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PeksyIt grow from 2 cm to 4 the widest. The suv in 2017 was 6. Than two years nothing, size same and this April 8.7 suv. I had cyberknife in july, dont know suv right before, in october suv was 4.7 and size on mri 3X4 cm and soft tissue in neural foramina however they did not if it is still inflamation after cyberknif
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Hi Moo! - agreed. I'm glad i waited until now to read stuff. Had a good cry over the ones I've read thus far. I found myself saying..."So that's why that hurts" alot. That's a good question to ask. Different types showing on different scans. I hope your new treatment is kind to you in terms of symptoms and a powerhouse against yourcancer.
Bone scans are showing some of the stuff are Sclerotic but maybe the ones that aren't showing on the bone scan but elsewhere are a different type. I guess I'll find out very soon when I request the last batch of scan reports to go over at my appt on the 3rd for checkup and zometa....lumbar MRI, 2 CT Scans (one at mets diagnosis, 2nd as baseline for Ibrance), and Brain Scan- so far I've just read my bone scans (one at mets diagnosis and one as baseline for Ibrance)....crossing myself several times to read these...Ahhh
BenJen - I'm sorry about the addition of bone mets to your plate
I'm sorry about Golum reading your reports too - still cannot get over that- "not sure what I'm looking at" "Oh oh! Extensive bone mets!". 3rd will be 5th? Zometa for me...4th or 5th...these have been much kinder to me than the first one was. Ugh. I felt like I had been whacked all over with a 2X4 the first time.
Thanks for your help ladies!
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