Bone Mets Thread
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dutchiris, maybe you could talk to your RO (if you have one already). I had some pretty severe hip pain before I was diagnosed. I actually thought my hip was fractured, which it wasn't. Then when I got the mets diagnosis, I met with the RO as well as an ortho oncologist. The OO was a virtual appointment, but when I saw the RO, he went through my scans with me and showed me where the damage was. We decided on palliative radiation to my spine (I think that was about 3 sessions) and then to my hip/femur. The rads to my hip REALLY reduced my pain in that area.
I hope you find a good solution to your pain.
BTW, I love your profile picture, although it makes me wince just a little. I mean, OUCH! I could not have done that before, and certainly not now. It's pretty to look at, anyway!
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Thank you for your response. I do not have excruciating pain but worrying a bit about it worsening.
That is my daughter in the picture. I might risk falling over putting my socks on, lol.
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hi again
My beautiful mother - newly diagnosed with MBC to her pelvis in October was today told she has some lyric lesions to her skull fault . Her her 2 status has also changed - and she is now er /pr+ and her2+ (2018 was equivocal then decided to be negative - and treated as such at the time ) now here we are.
I’m crushed - she will be facing chemo(taxol) now with herceptin and perjeta.
If any skull met sisters could reach out that would men so much to me and my worried siblings -
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I don't have skull mets, but there are a few ladies around who have/had them, hopefully they will chime in. Yes, they can cause problems like any other met, but they aren't brain mets - different situation entirely.
Also - the swing to triple positive is not necessarily a bad thing either, there are a LOT of therapies existing and coming through for HER2+, many of which are very successful at eliminating the mets or keeing them at bay for quite some time. Do you have a particular concern about her needing chemo at this point?
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Wishing your beautiful mom and your family the very best. So hard at the holidays, especially during this wretched year of the pandemic!
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Candm, you're moms diagnosis is actually fairly good in the stage IV world. I know skull sounds scary but it's still bone mets, not brain and HER2+ will give her lots of treatment options. Herceptin and Perjeta has kept me stable for 4 years, allowing me to live a pretty normal life.
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Thankyou everyone.
I am concerned with the chemo- the whole thing really. But in a way I am happy that we will be fighting this more aggressively.I am learning slowly more and more about the HER status and the options available.Taxol ladies- any insight? tips? tricks? Her Oncologist thought he would divide the dosing so she is in the chair more often but less of a "hit" each time or something like this- rather then every three weeks- she would go weekly
normal or ?
I just pray this works to shrink and/or stabilize.
She needs some good news .
What a wretched year indeed.
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There is a Weekly Taxol for Stage IV thread you may want to check out:
https://community.breastcancer.org/forum/8/topics/...
Those ladies ought to have tips, tricks, and reassurance, most of us bone mets ladies are on the Ibrance train, or Herceptin/Perjeta (triple positive). The poster Mara has in her signature noted she was on weekly Taxol at the start with her H/P treatment as well, so you may want to message her.
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yes, definitely visit that weekly Taxol thread. I did weekly Taxol with Herceptin and Perjeta, it was very do-able and not terrible...I had just turned sixty by the time my treatment started, so...I am no spring chicken but I did OK and got good results at knocking back the cancer
I highly recommend the icing of hands and feet during Taxol to help prevent neuropathy and funky nail conditions.
Best of luck to you and your mom.
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CandM...so sorry about your mom. Wishing her the best. Please keep us posted on how she's doing.
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Hi all. Had an ultrasound on the right side where this knot is. It is not painful. It is not movable. Now GP is sending me for an MRI because the radiology report suggested it. I hate the waiting game! My chart still has the “mets to liver/other” on it. I asked my dr why it was there when I hadn’t been told anything about it. She said it was a mistake. If it’s a mistake, why not correct it in my chart?
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TNMT....I would for sure got to a different place for the MRI if your previous report has a "Mistake" and they did not correct that...that is serious and that is not a SMALL mistake.
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TNMTNGAL, In your profile, it says after 2010 on Tamoxifen, you started on targeted therapy in 2018. Is this due to any progression in your bone Mets?
Agree with Nicole, maybe you should consider a second opinion or switch MO if you have the option. Such a “mistake” on your chart is not acceptable.
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TNMITGAL My God lady, I haven't seen you post in such a long time!!!!!! Throught we had lost you, seeing your face really warms my heart. God Bless You
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@snooky1954 Thank you Snooky! I’m still hanging in there. Just really busy. We started a new rental business on our property in addition to the wedding venue. We now rent out 3 units through Airbnb and it really keeps me busy, which is not a bad thing. It keeps my mind off things with my health. By my medical chart, I now have mets to my “liver/other”. I’m trying to figure things out. I have an MRI scheduled on my right side on December 23rd. Then I’ll have to wait on results through the Christmas season. As you well know...the waiting is the hardest. They’ve also added “adenocarcinoma of the inner right quadrant of the breast” to my medical chart, but haven’t said anything about it yet. (The original 3 cancers were on my left side.) I haven’t said anything to my husband nor anyone else yet because I really don’t know what is going on. I’m just waiting on my appointment with my regular dr on the17th to ask what’s up. Just pray for me please. And I always pray for everyone here. God bless you as well Snooky! I will update when I know more.
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Question...anyone.. with your bone mets in the spine...did your pain feel like a constant burning/stinging pain like a torn disc? I have torn discs, bulging discs, herniated discs/degenerative disc disease throughout my spine. Also, my feet hurt me soooo bad. They showed up solid black on a nuclear bone scan I recently had, as well as several spots on my spine. They said they were arthritis. Anyone else had this dx of arthritis but wonder if it’s really not more bone mets
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Also...both my implants were ruptured, so they replaced the original silicone implants with new silicone implants back in March. When they did that surgery, could it have “set off” mets to liver/ribs/chest bone? Anyone have a surgery that “set off” mets rapidly
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TMNTNGAL, I don't have the pain you describe in my spine, just a lot of ache, and it's through my whole spine. I can tell you that the only thing that showed it was bone mets was an MRI and subsequent biopsy. Not one other scan even shows anything. Also, I've been having pain in my left rib on and off for a while, but it's becoming more constant, so I'm going to see if I can get an MRI for my left rib. My mets are in my spine and stomach. No imaging shows it in my stomach,just biopsies.
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TNMTNGAL,
I have a lot of degenerative bone disease in my spine, as well as mets. This summer, I had my original radiation oncologist (from 2003/2004) look at all of my scans and I asked her opinion about my bone mets. She suggested having an MRI of my whole spine to see if they could discern what was degenerative and what was metastatic. Interestingly, when that came back, she said that a whole lot of it was degenerative disease, and not so much on the bone mets, although they were clearly there.
That gave a much clearer picture of my spinal mets and my back disease than did a nuclear bone scan that I had had a few months earlier. Perhaps it's something to talk with your doctor about?
Also why are all of these things being added to your chart about your situation, and by whom? If they are being added and not discussed with you, I'd sure be looking for another doctor or doctors. They are doing you no favor.
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I had that when I was first being diagnosed and started tamoxifen again( my treatment changed as I got my full diagnosis of bone Mets). hot burning pain. The only thing that worked to stop it was a topical herbal: frankincense and myrrh!! My husband was using it for neuropathy. It worked amazing. Once I got on my full treatment, Ibrance, etc it stopped.
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TMNTNGAL - I have only one of my mets in the spine that I routinely feel at T12, or right about my shoulder blades. It can be a dull ache when I've been active but at times I get weird little showers of prickling sensations in my legs and arms if I lay on my back or turn to my side. There is a compression fracture there so that's probably part of it. I have a couple lower in my lumbar and sacral regions that I never feel.
In terms of your bone scan, towards the end of the scan the feet are very close to the camera and those bones are tiny. The collimator setting for a whole body bone scan is very different than the one set for a close up of the feet. In a whole body setting it is collecting a lot of radiation in a very zoomed out view so they will look darker. If you compared a single view to a whole body view setting they would look very different on screen even at the same dose. It's not too unusual to have black on places that sit close to the camera such as the the feet and sometimes the nose area of the scull and curve of the pelvis. I have a spot of osteonecrosis on my left shin that showed up on my last bone scan and they were concerned it was a met. My MO and the oncology orthopedic surgeon told me it is unusual to get mets below major joints and it was in fact not a met. I was told areas on the hands and feet that show up are much more likely to be arthritis or degenerative processes than mets.
I agree with everyone here that it sounds like you are not getting adequate info on things being put in your chart. I would definitely ask for clarification. Praying for good news and clear answers for you.
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TNMTNGAL- Always good to hear from you.
I have rheumatoid arthritis. And disc degeneration in my lumbar spine-- L5S1. So, I do wonder if my various pains are from the bone mets, the RA, or the bad discs. My CT's show "sclerotic" lesions on the spine/pelvis. Bone scans say "degenerative changes" or "arthritic" but show uptake in hands, wrists, shoulders, clavicle, spine, hips, knees, ankles. So I wonder if the scans are not a good tool for checking my bone met status. Too much going on in my skeletal system. I have a lot of pain. But which is cancer, AI use, RA, etc. But my MO seems to concentrate on my liver mets more than the bone mets anyway.
Keep posting.
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I’m sure it’s been mentioned here, but if I want to see if there are mets to my rib or ribs, is that a specific MRI? I will be asking my doc next Monday at my appointment. CT never sees any of my bone metastasis or any of my cancer, for that matter, yet that’s what they still want to use on a three-month basis.
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Hi KBL.
I suspect it's a function of your sneaky ILC. It seems to be common for those with ILC to report difficulties in getting accurate scans.
In my case, the mets on my ribs light up like a Christmas tree with a bone scan. I find it interesting as bone scans have been pretty useless for me otherwise. They always note that the bone scan significantly underestimates the burden of disease as confirmed by CT.
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KBL my bones mets showed up in a nuclear med bone scan. They inject you with the radioactive stuff, you wait for several hours and then get scanned. The scan is a rather slow process, but not uncomfortable.
It's up to you whether or not you look at the monitor as you are slowly moving through the scanner. My bone mets showed up as lighter or bright white spots on the monitor. The CT scan did show some of the mets in my hip. My RO went through those scans with me which was very informative.
Oh, I just thought of something: The last time I got my bone scan, I had a CT scan scheduled for the time in between the injection and the actual scan. Since I was going to need an IV for the contrast for the CT, the nurse who put in the IV for the radioactive dye left the IV in place for the CT person to use. They removed it after the CT scan, but it kept me from having to be stuck twice.
I had a similar experience when I needed bloodwork done after my Zometa infusion. I asked the infusion nurse (before she started) if she could leave the needle in so that I could get my blood drawn through the same needle. She said, "Oh, we can't do that, but I can draw your blood here right now and send it to the lab." Again, it saved me from an extra stick. I still have good veins, but anytime I can avoid an extra stick, I'll do it.
I hope you get some answers.
(((hugs)))
Carol
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Hi, sadiesservant and Sunshine. That’s one of my biggest problems. I’ve had a few bone scans, PET scans, and CTs, and although I’m loaded with cancer in my total spine and stomach, none of those show a thing. Sneaky ILC is right. I suspect it may be because it’s in strands or because my many tumors are under a centimeter and don’t light up. I did read once that with ILC, you should try a PET scan once if nothing lights up, it’s never going to.
Have either of you had some kind of MRI of your ribs? That is the only scan that’s ever shown my cancer and the only only one I semi trust, except for biopsies, since they’re the definitive answer.
That’s why I had a missed diagnosis from 2013. It’s just so weird.
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No, I haven't had an MRI of my ribs. I did have one of my head recently when I was experiencing killer headaches. Thankfully it came back negative for brain mets but confirmed the c-spine and skull mets which we already knew where there. I had radiation to the area in November which thankfully took care of the headaches.
MRIs are harder to get here as there are long wait lists. While I do get bumped to the front of the line, I think MOs are judicious in their use. I can certainly understand it given how long an MRI takes. I was in the machine for over an hour for the brain scan! About the only good thing was I had such a bad headache that I was happy just to close my eyes...
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KBL,
Just to weigh in here -- this summer I had an MRI of my skeleton to try and sort out what was degenerative disease and what was actually mets. On the MRI report, it says that the MRI cannot really visualize the mets to my ribs (although they had shown up in a CT, I guess). I also have lobular, so I don't think that an MRI will do the trick for you for this particular thing. I mean, you can try, but that's what my report said.
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Thank you, BevJen. I’ll keep you posted on what my MO decides to do. I already know CT won’t work on seeing rib mets.
I’m so glad your headaches got better. I’ve been having minor ones every single day. They’re not to the point I can’t handle them.I think they’re either sinus or from my neck.
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KBL, I did have an MRI but it was just of the pelvis and was ordered by the Ortho Oncologist. It was about a month after the initial mets diagnosis. As I'm thinking about it, this must have been what the RO was showing me. The concern was for the stability of my femur and whether or not I needed a rod to prevent a fracture. So far, I don't need the rod.
I haven't had one since then. My next set of scans (nuclear med and CT) are scheduled for the end of December.
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