Bone Mets Thread
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B-A-P, fwiw, my liver mets continue to shrink while at the same time I grew a new lung met & a bone met. Cancer is a wiley bastard. Oh & my bone met showed as a mystery blob on CT and was subsequently confirmed by nuclear bone scan - so it showed on both and there was congruence in the interpretation. I think I read something about lytic v blastic bone mets showing differently on various scans. I went down the pubmed rabbit hole on diagnostic imaging of bone mets last month & read a bunch of articles & then said "whoa, let the oncologists do their job" but my takeaway is that it's.... complicated...
Hope yours turns out to be nothing at all.
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Hi, I learned yesterday that I have bone mets to the sacrum and a lumbar vertabrae from an MRI. I am scheduled for a PET Scan next week. I have pain/burning in my hips and tailbone. What helps with that? Tylenol only helps a little.
With treatment (radiation, drugs, ablation) does the pain go away for the most part? At least for a short time?
I have this nervous, jittery feeling inside right now (and yesterday). I am trying to do deep breathing, distraction with puppy pics online, prayer, etc. I am employed in an office, and I have not told my boss, yet. I have to tell her this afternoon about my appointment next week.
Thanks!
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GoKale - my initial dx was mets to femur (really bad), iliac, sacrum and T11. I had a very hard time sitting. It was just 12 months ago but seems like years to me. I had radiation for femur pain. I’m happy to report that I have little to no pain in my hip and sacrum from the Fulvestrant/Ibrance/Zometa treat I’m taking. I can’t remember when my butt area started feeling better but I want to say it took a few months. I don’t like to take much for pain (personal choice to put less stress on my liver) but would take ibuprofen as needed - 400 to 600 mg. I wish you well with your treatments and hope you find relief quickly.
On another note, when I was stage 2 I wound up telling my boss immediately because I received my diagnosis over the phone at work and I was a mess. I tried to return to my meeting after my call but apparently I wear my heart on my sleeve and the room full of all men asked “what’s wrong”. I crumbled. How embarrassing but at least I knew these men very well.
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B-A-P...I'm in a similar position as you right now regarding possible bone mets. I had my 6 month bone scan (8 month this time because of Covid) yesterday and he took numerous extra pictures. I think I was on the table 1.5 hours. He said he saw something on my shoulder, elbow and possibly jaw area. He said he needed the extra pictures because if he doesn't get a good view they will need to do it again anyway. He then told me not to worry too much. Yeah ok, tell a Stage 4 patient not to worry. So here I am...worrying.
Question...my bone met is in my sacrum so it wasn't really something I could touch to see if it's painful. When I press down on one area for the shoulder and elbow I do feel some pain but it feels more like nerve related. Anyone that has bone mets that you can touch, what did the pain feel like?
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GoKale, I found that Ibuprofen or Aleve is more helpful for bone mets than Tylenol. Unfortunately Tylenol never did much for me. After my bone mets worsened I had to switch to a longer acting Rx NSAID (I'm on celebrex) but for now you might want to consider one of those OTC options.
It is really hard when you are first hit with the news of mets. I did the same things you are doing, but it completely makes sense to use a medicinal crutch if you feel you need one. Talk to your doctor. After you get your PET scan and you get a treatment plan in place you will gradually be able to adjust and let the dust settle again, until then, be patient with yourself. Best wishes.
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RK2020 - thank you for such encouraging words.
Buttonsmachine - thank you. Once I finish the steroid pack I was on (I thought I had an exercise injury), I will switch back to Advil and hope it helps more until I can get a real plan in place.
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thanks for the input so far everyone. It’s true that there is not much control over it and as far as I know there’s just one area they’re looking at. I don’t really have much pain at all (just an ache in the SI joint every now and again but nothing lasting ). It’s never nice to hear that it might be in another area other than my liver but I realize that it might have been missed previously. If it wasn’t, then it’s continuing to move and that’s distressing.
Sometimes the anxiety spirals and then I wonder if it is a met, if they’ll suggest rads or let the chemo take care of it (I’d rather rads). I’m so used to pushback with treatment that the unknown is so bothersome to me. I hate the wait . It’ll be another week before I know anything since I have to wait for my regular CT to take place .0 -
B-A-P, radiation (palliative) REALLY helped my hip pain. I had 3 sessions to my L4 and L5 spine and 10 sessions to my hip/femur. I hope you find relief from the pain. I take Tylenol PM now at night, but nothing else for pain - at least at this point.
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hi sunshine. I don’t actually have any pain. Just the odd ache here and there in my SI. If it wasn’t for the bone scan yesterday I wouldn’t be aware of anything bone related. But it’s not confirmed to be a met. I’m just anxious. They saw something but at this point who knows what it is.
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Kale - if you are a candidate for radiotherapy to the sacrum or the other painful mets, that will solve the pain pretty quick. My sacral met was so bad I was losing power in my right leg and was on crutches. While it took a bit of time, I was able to reduce my pain reliever needs week on week after five sessions and my leg strength eventually came back. I don't take any painkillers now for my mets; only a few times a week due to menopause creakiness.
I also thought I had a standard exercise injury I had done so many times before, which confused me to no end. But I do recall having some slight niggling hip/sacral pain after a long walk, some 9 months prior, which I only recall because my parents were visiting and I asked to use my dad's TENS unit that night.
You may want to hold back from telling anyone at work your full diagnosis until you get the whole picture and treatment plan.
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SondraF - thank you for this information, it is very encouraging. I really hope to have a good treatment that helps like that.
I was able to let my boss know about my appointments next week without giving her all the details. When I told my husband yesterday, he took the news bravely. We decided to wait for all the test results and a plan before we tell anyone else.
I am so thankful for all of you and your helpful suggestions. It has been a tremendous help to me mentally as well.
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Kale, I will echo what Sondra said regarding pain relief with radiation. I have had several treatments, I have extensive bone mets, including to the sacrum, lower back and right hip. At once point I had a bout of sciatica from the mets that made it almost impossible to walk. The radiation was astonishing in how quickly it resolved my issues with the exception of the hip which only provided a partial response (likely as some of the pain is arthritic). My recovery from each treatment has been pretty quick with minimal side effects but, of course, it depends on where you are receiving the radiation and the other tissues that are exposed to the beam.
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10 rounds of rads in my spine for Mets. No more pain. Thank goodness. Minimal SEs - some indigestion and oddly my belly button got red and raw. Steroid cream took care of that. Anticipating more on pelvis TBD. Good luck
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Ladies, I am back from a pelvis MRI. I got the results in the portal but I don't know what they mean. Are you familiar with this terminology? It says:
15 mm markedly T1 and T2 hypointense ovoid focus within the posterior left iliac bone is in keeping with a bone island. Otherwise, no discrete osseous lesions.
While waiting with anxiety... thank you!
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LillyisHere, bone islands are benign masses in the bone
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Thank you Moth. What is hypointense ovoid focus mean?
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oh that is way above my info but I think it's just how radiologists describe what they're seeing.... kind of like me saying a "black and white prick eared long snouted four legged canine" is in keeping with border collie type dog..... I think that's what that language means anyway. Hope you get to talk it over with your doc soon!
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LOL Moth. I don't want to take over this thread but I can't stop laughing
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Well, moth, you answered a question for me, too. 8 months before I was diagnosed with MBC in 2017, a radiologist noted on a chest CT:
alt="" style="width: 482px; height: 58.0098px;">This is the first time I've seen an explanation. This was in June of 2016, and in Feb of 2017, I was diagnosed with MBC, later confirmed by a bone biopsy:
alt="" style="width: 445px; height: 77.0695px;">If anything remotely funny can be associated with this, my GP provided me with this (Feb) information and noted that she'd set me up with a radiologist for a bone biopsy to determine the cause of the widespread sclerotic foci (she said it was either MBC, lymphoma, or multiple myeloma). She said that the appointment would be in two weeks and that I'd get the results 10 days thereafter.
I'm a Realtor, and I have LOTS of clients who are doctors AND good friends as a result of doing business. I called a dear radiologist friend, and he said, "I'm doing bone biopsies tomorrow morning..be at the hospital at 10 AM!" He did the biopsy personally that next day and had the results for me virtually immediately. It was very interesting to see my GP's face when I was able to move things quickly when she could not or didn't make the effort to do so...I have another GP now by the way....
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hi B-A-P and everyone. I have bone mets , confirmed in CT, Bone Scan, and PET-CT. still the doubts remain in my mind, even having pain in Right SI Joint.
One thing my Onco told, to get a CA15-3 (Tumour Marker) Blood test done, before he starts treatment which I did. He told that in case the TUMOUR marker depletes and these Tracer signs on Scans persist, it might be Arthritis.
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Moth, love your interpretation, can’t stop laughing 😂
Lilly, in my recent ct-scans bone islands or enostosis (another strange terminology!) noted. So I started massive study (new job)! Moth is right, bone islands are benign lesions, small (usually less than 1 cm), round and stable, and develop in their origins which means they don’t travel to other part of body unlike malignant lesions. they mostly appear in long bones like femurs but also in spine.
So now the question is what is the cause: during the process of remodeling of bone or cycle of bone growth or endochondral ossification, old bone tissues breaking down- also known as resorption- to growing new bone cells. Osteoclasts (kind of bone cells) are responsible for resorption. When resorption process has not completed- due to age, health conditions, some medications etc- a bony mass or focus or osteoclasts or (feel free to add as many as radiologists strange terminology here!) remain in spongiosa where ossification (bone growth) is in process. Also osteoblasts are kind of bone cells that form new bone. This new bone tissue is called osteoid, which needs calcium and other minerals to calcified as bone.0 -
hi moth, i believe you mentioned something about the hard CT table, yes they are awful, but about 18 months ago while getting on the table for MRI, i mentioned to the tech that i have a lot of pain lying on the hard table and out of the closet came a foam covering for the table!! never knew it existed, but now i wont get on the table without it. last time i needed two layers (i think they were thinner than usual). so ask and see if you can get some cushioning so you can be comfortable during the scan.
have a good weekend to all.
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Thank you Snow-drop. Sometimes I think the knowledge, drive and intellectual curiosity some of you have could have been a very valuable to "cure for cancer" industry.
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may I ask a question please. This is all new to me
Just got my first blood work
Ca27-29 marker is 89. Is that high?
bilirubin is high Does that mean my bone Mets have spread to my liver!
OTT scared. Thank you
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Hi Chatham Lady,
I read that anything over 38 for that TM is considered high but you can't make any judgement based on a single reading. It's all about the trends. If you have mets then it is not surprising it is high.
There is huge variability among readings for tumour markers. My MO only recently measured Ca 27-29 and I don't know what the results are. He more typically uses Ca 15-3 but, in my case, the numbers have never been particularly useful. I think the highest its been is 46 even though I have extensive mets, now in my liver. It has gone up but the change is subtle.
I think the same can be said for the bilirubin. If none of your other numbers are out of whack then I don’t think it indicates problems with the liver. They will keep an eye on it but many things can influence our blood numbers including our level of hydration, any meds or supplements we are taking, etc. I know it’s hard but don’t panic.
Hugs!
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thank you. Just scared out of my mind.
appreciate the calming inf0 -
Moth love the analogy.
I agree some of you all would make great scientists or researchers. I feel like I need a medical terminology class just to keep up.
CL.scary times until you have a treatment plan. Doesnt matter how many either. I’ve been doing this 8 years and still feel like you this weekend. Waiting stinks.
So my scans came back stable for liver and lungs but increase in bone mets since last 3 months. Sternum and arm were new last scan and now have a friend.
I’m on abraxane and zometa. Have failed anti hormonals, some twice. Was taken off xgeva when I had progression before. My MO is considering my staying on abraxane as I’m tolerating it very well and liver hasn’t been this good in years. She doesn’t want to add another chemo in conjunction so it can be used as a standalone later. I’ve failed several in the past 12-18 months.
Anything I can do for my bones? Inside or outside the box?
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Zillsnot4me, rads seems like a reasonable option & totally inside the box. Either a high dose of traditional or SABR/SBRT? Whack a mole oligoprogressions is my team's current treatment approach: treat small progressions with rads & try to stay on current systemic treatment. My liver mets are shrinking so nobody wants to take me off the systemic while that's happening - hence rads for both a lung met in Dec and bone met right now.
My bone met is totally asymptomatic btw. I mention it as I was just speaking to someone who said she wouldn't get referred to an RO unless her bone mets were hurting... that's not my RO's approach. He's very willing to treat asymptomatic mets to just kill em dead. Hth!
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Hi, I had SBRT for my bone mets. All were asymptomatic. I had 3 sessions (total of 24 Gy) of Cyber knife treatment to single T10 met in 2019 and 1 session each (20 Gy) to two mets in T9 and T12 in november 2020. Actually I started to feel something (like very light neuropaty) only after treatment in two-three months after radiation never before.
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Hi! So I am new to this site. I was diagnosed with breast cancer ( invasive ductal carcinoma ) on the right side in 2008. It was 1.7cm. Stage 1A grade 2 Er+ Pr-, Her2 -. I chose to have a mastectomy due to some family history and I had same day tram flap reconstruction . I had the axillary lymph removed and it was negative. I was 45 years old. The oncologist said I had a very low risk of recurrence. I don't remember the actual percentage, but it was 0- something. I remember the zero. I chose not to follow with Tamoxifen due to risk of blood clots, weakened bones, etc. I went on with life, and in 2017 I began having back problems, so I went to doctors, and had injections that helped for awhile. I had a MRI in 2018 and there was a lesion on my sacrum, I was referred for a bone scan but it did not detect that lesion, however, one on my tibia/ fibia was detected. After more x-rays, CT scans and another MRI it was determined we'd just keep an eye on it but it was forgotten about. Now fast forward to 2020. I went to the doctor with pain in the center of my chest and shoulder. I had seen the doctor for a cough a month earlier and was told I had infiltrating lung markings, so of course I just asked if it could possibly be related. She all but rolled her eyes at me. She looked at my records and decided to run some blood work. I admit I am not the skinny girl I once was, now I am a little fluffier and I have high blood pressure. She was indifferent to me. One of the tests was a d-dimmer and it came back abnormal. When a d-dimmer is abnormal it usually related to a blood clot in the lung. I suddenly became more interesting and was sent for a CT scan. That is when my cancer journey began once again. Multiple lytic lesions were seen throughout my sternum and ribs. I was sent to Oncology and had a PET scan that detect innumerable lytic lesions in my spine from T-3 to sacrum, in my sternum and my ribs look like I was shot with buck shot several times, lesions in my shoulders and arms, both of my hips and right femur are involved. I have a lot of pain on most days, pain in my ribs, burning sensation down both legs but especially down the right side with numbness in my foot. I was prescribed Celebrex and recently Oxycotin for pain, but not taking the Oxy much. I was prescribed Ibrance, but had the dosage cut from 125 mg to 100 mg due to nuetropenia and now I have been completely taken off due to continued adverse effects. I am on Letrozole only until my next appointment in 2 weeks. I am struggling to understand how what is said to be a slow growing cancer was not detected 2 years ago and how one uncertain lesion has now taken over my upper body. Since I haven't had my legs scanned so don't know if it is all over them as well. My doctors plan was to look for a gene but he requested results back in January and still nothing so the plan is to reduce the dosage of Ibrance to 75mg. I just feel lost in all of this. I don't know what my prognosis is or if I am getting the right treatment.
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