Bone Mets Thread
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Just saying Hello.
Thread kind of quiet last few days.
I am starting to get anxious about scans. They are next Mon the 21st. My thoracic spine is hurting more lately. Inch or so above bra closure. Same spot all the time. I have documented sclerotic areas at T5 and T11, but they have been labeled "stable" on previous scans. And my TM's have slowly, steadily risen over the last 4 months.
I wonder if my MO will mention the increased TM's or my reported pain to the radiologist?? I wonder if I should mention to rad tech when I get scan for them to tell radiologist?? I get CT only. Insurance denies PET and bone scan iffy with my RA issues. I fear the cancer is worsening.
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Candy -
I have had significant pain in same area as you for over a year. I am convinced it is an undetected compression fracture...I also have severe low back pain which is my most debilitating pain of all. Numerous CT scans and bone scans have shown only sclerotic mets not getting larger. They keep telling me these pains are musculoskeletal for now.
I have seen physical therapy before and getting ready to see them again for more relief, hopefully.
Just encouraging you, reminding you, that it may be something besides your worst, and very understandable, fear. We can do a number on ourselves...you are not alone...
Warm Wishes to you,
Gumdoctor
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Thanks Gumdoctor. Maybe if scans don't show progression/compression fracture, I will ask MO about PT treatments. I am using heating pad.
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Candy, yes it sure stinks thay there's not better tests available. For sure I would tell the tech about your increasing pain. Best of luck to you.
Gail Mary
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I had weakness and bad pain on my right side. I was sure it was mets pain but a trip to orthopedist and 12 weeks of therapy plus a guided nerve block cleared it. Crazy I have pain from mets but this was the worst. I hated the thought of more doctors but it was worth it. Good luck.
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candy-678...at my last appointment my MO prescribed me Gabapentin. I’ve been taking only 100 mg at night and helps with the pain and sleep. I can increase the dose as necessary to 300 mg @ 3 times per day.
Stronger pain killers like diluadid and Roxicodone were not helping and way too strong. They seemed to only last a couple hours too. I had radiation to T11-12 area last year. The pain hurts exactly where you stated above/along the bra clasp. And radiates up to the shoulder. I have many other bone mets, but the T11-12 and C2 cause me the most pain
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Thanks for the advise. Mine is couple of inches above the bra clasp and radiates to right shoulder blade. Gumdoctor states that her bone mets didn't show worsening with the pain and Marie's wasn't worsening cancer, bbpie -- do you know if your bout of pain was worsening cancer? I do have a lot of skeletal issues with the rheumatoid arthritis and low back issues from years of work. I wonder if this pain is the cancer or the other issues. We will see what the CT shows and I am going to press MO if it doesn't show anything--- do we need another type of scan to see better?
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My increased pain could be from cancer as the T11-12 had interval increase. Also shows “mixed lyric and sclerotic lesions, extensive soft tissue enhancement and edema in the spinous muscles likely representing tumor infiltration versus infection” per CT report. Could possibly be from breakdown of bone not growing. The tumor was 5 cm last year. The pain has been worse the past few months. I was moving from bed to chair to couch all night and not getting restful sleep. I’m able to sleep in the bed all night now...waking up a few times. I also felt the pain was related to my liver tumor too
My CT scans are scheduled for Oct 30 to determine if Doxil is working. My tumor markers have been increasing since January. This past month the CEA jumped from 130 to 390 and CA 15-3 from 229 to 303. These are a good indicator for me that the cancer is very active.
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So sorry bbpie.
My CT reports seem to use the terms lytic and sclerotic interchangeably. I know the meanings are different, but the CT reporter uses both words, or one or the other, over the last 2 years worth of scans.
I too do not get good rest. But I also have pain in my hips, shoulders and lower back so I am constantly changing positions. And use several pillows for support.
The pain I am having now in the thoracic spine/shoulder blade is more during the daytime. Feels like someone wacked be across the back.
My TM's have slowly risen--- max CA 27.29 last month was 59. But up each month over the previous month.
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Hi guys,
Does anyone get back spasms/spinal contractions from mets in the spine?
Does this mean progression
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Faith123, anytime I lay down flat, the muscles in my back go crazy. I had a CT and bone scan recently and they kept telling me to be still, I couldn't because of the muscle spasms. If I lay on me left side, it doesn't do it, it's weird.
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Candy, My compression fracture at T11 caused me the most trouble. Pain radiated all around to my ribs and the nerve root was so irritated that my skin looked like it was jumping. It took a month for that to calm down and thank goodness because it was weird. My tumor markers increased a month ago by 10 percent after dropping steadily for four months, and at about the same time I started having a bit of low back pain and across the iliac crest. My CT scan showed no change from the last scan which was awesome but then my nuclear bone scan came in with activity to lumbar spine and iliac crest. So it was mets for me but it didn't show up on the CT scan. For me this was hard to take - I have not yet had a stable scan of any kind since this all started in March. Really discouraging. But I have a freidn here in town who has the the exact same situation with many compression fractures and she finally got her first stable scans in August after changing from Ibrance to Afinitor over the course of the last year. So take heart - it could be compression fracture which is not good but it's doable. I have three of them. If lying down takes that pain away then that's even more of a possibility. Compression fractures typically feel much much better when lying flat. I used to love getting into bed at night becuase it takes all the load off my back and I felt so much better! PT helps immensely. Hate waiting for scans. I'm right there with ya!
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Moomala, I don't have any compression fractures but have mets to my pelvis, thoracic and lumbar spine. I was reaching and stretching over something at chest height with my left arm. I suddenly had pain over my ribs on the left side few inches below my arm pit. It was quire painful for about 10 sec and then stopped. At first I thought it was a cramp or something. Could this be nerve related? What was yours like?
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I have an mri tomorrow morning after a neuro finally did nerve tests and determined my right leg is basically dead. The neuro ordered it well over a month ago, but it never got scheduled due to “a new girl who was behind in scheduling tests for patients”. So...I got my regular dr to order it when I was there Tuesday and they’re getting me in in the morning. It usually takes weeks to get one scheduled around here. I just wonder if she ordered it stat? My thoracic and lumbar pain is horrible, even on lortab 10’s. I’ve done every kind of treatment you can think of. I just hope they find out what’s going on with this mri tomorrow. Tomorrow mri......then the waiting game
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TNMTNGAL- Good to hear from you. Seems like a while since you posted. Sorry you are having so much problem with right leg and back. Will be thinking of you tomorrow for MRI and let us know what it shows.
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Candy...it has been a while. Thank you for your thoughts tomorrow morning! I will definitely let you know what they say
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Olma,
Hope you find a good solution!
I did get a root canal last summer (2018) after a molar cracked. They mentioned extraction, but I thought the root canal was least invasive. It’s still tender at times. I went into a lot of detail about the situation beforehand and went five months between Xgeva doses. I’ve been on a quarterly Xgeva plan for two years. Before that I got it monthly for a year and a half.
Yet another fun feature of MBC...ugh
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Well...they have read my mri...but they won’t give me the results until my dr signs off on it. She said she’ll get the nurse to call me. I HATE the waiting game!
Ughhhhhhhh!!!!!!!
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Thanks for the encouragment, Iwrite! Still in limbo, waiting for the docs to concur on a dental treatment plan.
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TNMTNGAL, I agree- waiting is the worst since all sorts of thoughts are spinning in our head! Hope you get good results. In my experience, if there was bad news the dr or the NP would have called by now. I guess, no news is good news?
How accurate is the MRI scan for your bone mets? Are the radiologist able to tell if there was progression or not? I get MRI of my whole spine every 3-4 months, but that is only to ensure there is no nerve impingement. The neurologist and my onco told me that it is very hard to tell if there is progression based on MRI images. Hence I was curious about what your dr thought about MRI for monitoring bone mets.
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My scans are all stable, however, it did say I have 3 fractures in my spine. I've been trying to work out 4-5 times a week so maybe that's what did it? The weird part is, she didn't seem the least bit worried about it and told me I have no restrictions on working out. I'm scared to do it though, fractures in your spine seems like a bigger deal then she was making it.
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BigPeaches: All I can say is, huh! That is odd! When things seem unclear in the medical world and with doctors, I think asking for a clear clarification on the matter would be helpful. Perhaps she doesn't realize the type of impact exercises you are doing? Maybe she is assuming you are doing light yoga stretches? I would double check on that one. Keep us posted!
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BigPeaches: All I can say is, huh! That is odd! When things seem unclear in the medical world and with doctors, I think asking for a clear clarification on the matter would be helpful. Perhaps she doesn't realize the type of impact exercises you are doing? Maybe she is assuming you are doing light yoga stretches? I would double check on that one. Congrats on the stable scans despite the fractures! Stable scans are great! Fractures I would also feel concern around. Weird that your doc made it sound like no big deal...? Keep us posted!
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BigPeaches I have three stable compression fractures but something is going on in my lumbar spine and I'm wondering if I have another one happening. I have been very very specific with my orthopedist and my physical therapist about what I can and cannot do because MO told me I could do whatever I was comfortable with and I was not sure about her answer. And they have been very specific back. I do have osteoporosis and I also have bone mets up and down my spine, ribs, pelvis. They told me the following are okay
1. Walking - I either do outdoor walking or Leslie Sansone videos which are great for older exercisers with limitations.
2. Stationary Biking - no street biking due to risk of falls or sudden stops resulting in impact
3. Water walking
4. Tai ChiThey said absolutely no to yoga and pilates. Swimming would normally be okay except that I have a compression fracture at C7. Certain aspects of swimming cause a neck flexion that doesn't feel too great when you have a compression fracture there.
I got a TON of information about compression fractures and exercise from my PT. It might be worth asking your doc for a referral so that you can be sure you aren't causing any more damage by doing any sort of impact exercise - which by the way means that there is one foot on the floor at all times. Both feet off the floor at any time during exercise and you are doing high impact. I do about 2-3 miles walk per day 4-5- times a week and an hour of PT exercises every day. My situation got pretty bad so I'm not allowed to lift weights or anything - I can only do bands/resistance. I miss my workouts so much!
Congrats on the stable scan! WooHoo!!! Sorry about the fractures!!!! I actually had a really rough time with compression fractures earlier this year but with PT and starting Ibrance/Letrozole I was good in about 2-3 months. I/L failed and after just a couple weeks off them waiting to begin new treatment I'm already feeling yucky again with some pain in my lower back and hip. My scans were ok a few weeks ago but I have not had an MRI since March so off to the tube I go!
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Great info Moomala!!!
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Ladies with arthritis and/or RA situations - did you have really painful mets at any time? And how do they tell the difference on the scans?
All I know is that I have mets to the sacrum and illium but I also was flagged three years ago with spinal arthritis and some stenosis and I have had longtime sacroilliac problems. And my one and only genetic risk factor for anything in this life is spondylisthesis - my father has it. Reading up on those symptoms is exactly the problem I am having with my right hip and leg with stiffness, relieved by rest, heat, NSAIDS etc. I cant imagine they would have misread a nuclear bone scan+CT+MRI, but I was wondering. At this point I'm just hoping I don't have two different issues going on.
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S3K5...Dr can’t see mets on my mri. Does, however, see many bulging discs, canal narrowing and pinched nerves. I’ll need another bone or pet scan for Mets.
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Sondra- GOOD QUESTION. If you get an answer, let me know.
I have RA. Diagnosed in 2014, 3 years before the cancer diagnosis. Plus I have "severe degeneration at the lumbosacral junction" per CT report. And the bone mets is cervical, thoracic, lumbar, and pelvis. I hurt ALL THE TIME. The CT reports will comment on the sclerotic/osseous metastasis. Bone scans are not reliable for me due to the RA I guess---shows uptake ALL OVER BODY. And the 1 and only PET I have had showed the mets in the cervical spine. My MO doesn't seem too concerned about monitoring the bone mets, but wants to watch the liver met.
My guess is the radiologists and the MO cannot tell which is RA and which is cancer. I have known bone and liver mets, so they don't really concentrate on the bone anymore.
All the while I hurt like crazy.
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Thanks candy - was hoping you would chime in. I flagged the issue with the breast specialist/surgeon when we had the first discussion after the CT scan back (but not the bone scan) and she acknowledged the risk of false positives. Discussion with oncologist after the bone scan - I never spoke to him about the sacroilliac problem because it was just confirming what I already knew and I figured that was that. This keeps bugging me though - I didn't know dad actually had a genetic arthritis problem in his back until he told me in early August, I assumed he just always had a bad back.
I know what severe back nerve pain is; what I have now is not that. Supposedly once the Ibrance starts I cannot have ibuprofen or tylenol because it can mask a fever. Ok I got that, but dude, I need to cut this inflammation. He said codeine but jesus h, co-codemol does jack for me and I really dont want to be on planet zog more than I have to due to drugs.
I'm certainly not denying I have bc - one look at right sided Frankenboob confirms that and I saw Chad Tumor on the radiologists screen after the mammos, but I really am curious just how extensive the mets are. Probably something I should pin him down on the next time I see him. Cannot wait to get the all clear to go back to the chiropractor as he kept me moving!
The only literature I have seen on this was Multiple Myleoma masquerading as sacroillitis which is kinda the wrong way round
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So, I posted a few posts back about new pain in my spine - couple of inches above bra clasp radiating to right shoulder blade. I got my CT report today. "No new skeletal metastasis identified". But the pain continues. I am going to ask MO about it next Monday with appt. Can CT see the bone mets or possible compression fractures well, or would another type of scan be better? MRI or just plain x-ray. Probably just get the shoulder shrug from the MO and that will be it. As the pain continues.
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