Bone Mets Thread
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This is definitely a semantic matter but it’s interesting to see the value/importance we sometimes attach to these terms. I remember that over the years we’ve had a member or two assume that NED was the same as cure, as they were not stage IV. One woman asked if there was no evidence of disease, then how could the disease recur. I can understand how bewildering a recurrence would be if you thought NED was forever or didn’t understand that tiny bc cells may not be detectable with out current testing methods but they can still be lurking in your body.
And don’t even get me started on folks who use the word cured…0 -
@sondraf I so agree with you. And I’ll take it one step further. As long as my scan comes back without any new growth gone berserk, I’m good. I’ve had more bad scans than good scans so I guess it’s all a matter of perspective as well as a mental survival tactic of mine.
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Spookie, how is your backside feeling? Have you been taking anything to relieve the soreness? Do you use a heating pad? When is your next dr appt? I would definitely mention it to your mo. I usually get asked at any kind of dr appt if I’ve had any recent falls, but bring it up if they don’t ask. Why do you think you fell?
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Backside still hurts divine. I’m not sure if it was my knee that gave out on me or I do have a funky back and it’s been hurting could’ve been either or both. I did tell MO today that I fell. He was just like OK I can’t get my knees fixed. I wanted to a couple of years ago, but they have determined that I’m too medically fragile to have elective surgery. Heart attack would be different or stroke but not this so I have a wheelchair that I stay in around the house. I have a very nice ramp out front in the lift on my car and I guess I’m just gonna be stuck in a chair for most of my time Tylenol knocks it down. It’s not real bad anymore. I’ll be all right. It was just embarrassing to go down in a restaurant. I did get myself a fancy recliner two years ago. It’s got heat massage and will stand me up. It’s wonderful.
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@sondraf It’s early days for A/A but so far it’s a non-event. I started a dexamethasone swish and spit on day 1. The roof of my mouth is a bit tender but no sores. My doctor’s first choice was Trodelvy but I wasn’t strong enough both physically and mentally to go that route. I’m under no illusion that this will work long term but if I can feel human again for a few months, I will gladly take it. My June biopsy showed a PALB2 mutation so I was hoping to add Lynparza to my tool chest but alas PALB2 didn’t show up in December’s biopsy. So many tumors, so many variations.
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Tsioutsiou,
I am also Greek and I read the stage 4 forums because of my 65 year old mother, who has mets in bones and lungs. You will find valuable information here and you will also read stories that encourage you to help your mother. At least, this is what I feel. I don’t think the stat you read about 24 months is accurate. Actually, everyone is a different case and is treated individually. At the beginning, you may feel disparate, but you will soon find peace and strength to support your mother and see your life from a different prospect. I wish you all the best.
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@margarita12 Am very glad margarita I find a Greek person here, but don't get me wrong, am not glad you r here. We are from kefalonia, but now we r in Athens. Where r you from? R you in Athens as well? Would you like to meet maybe?
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Hello girls. I want to make a question. My mother's breast tumor is only 8mm, but the metastases to her bones is almost everywhere. Skull, ribs, pelvic, spine, upper arms and upper legs. That means that the tumor is very aggressive? Shouldn't the tumor be larger since the spread is quite a lot?
They also found a 11mm cyst in her uterus and they told her today to do mri and colposcopy.
Thank you in advance
P.s sorry for my English, is not my mother language.
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tsiutsiu,
I am not a doctor so I may be incorrect. Although the size of a tumor is taken into account for staging, aggressiveness is a graded scale of 1-3 which looks at the actual cells of the bc tumor. Breast cancer tumors spread on a cellular level either via the lymphatic system or the bloodstream. Although smaller breast tumors are looked at more favorably, that in itself is not a guarantee that there will be no metastasis. It only takes one little cell to set up shop somewhere and begin to spread. Additionally, we have members who were stage IV at diagnosis and NO breast tumor was ever found (occult) . This is a long way of saying that the size of your mom’s breast tumor doesn’t have to be big to metastasize nor does it mean metastasis will be limited because the breast tumor isn’t large. Again, it’s possible to have breast cancer metastasis without ever finding the breast tumor. Take care
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Thank you so much unicorn from your promt replay 😘
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What is the consensus with using TENS machines? I don't want to use it directly on the mets, more for other parts (quads, hip flexors, glutes) where I have myofascial pain and tightness. I read somewhere ages ago TENS machines were contraindicated for bone mets folks, but it seems like some on here do still use them?
I'd love to use my massage gun but that one I know for certain is not allowed regardless of area.
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Unicorn hi again.
How is possible not to find the primary breast cancer and have a therapy? Because you need a biopsy to find the type of cancer so you can have the therapy. For example er, pr, her2
Thank you in advance
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Exactly what rk2020 wrote. When they biopsy the suspected area, the cells are identified as breast cancer cells, as opposed to cancer of those organs. Each type of cancer has identifiable qualities regardless of where in the body it appears. So regardless of the site of metastasis, it is still breast cancer not bone, liver, or anything else
Breast cancer does not present or progress in a linear fashion. It does seem a bit strange but as you learn about breast cancer you’ll get a better understanding of what’s involved.1 -
@tsiutsiu I had a missed diagnosis in my spine because they thought it was multiple myeloma. It spread to my stomach because of no treatment, so I had an endoscopy with biopsies, which identified it as breast cancer. A bone biopsy after the endoscopy also said breast cancer. The cancer has never been found in my breast. So I have occult de novo breast cancer.
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Has anyone had a bone scan shortly after any kind of spinal surgery? My MO's office called to schedule my next bone scan, for next month, and I'm not even two weeks out from thoracic instrumentation surgery. I can only imagine all the vertebrae where the screws were inserted are going to light up dramatically, because they are healing. So not sure how useful or necessary the bone scan will be. A CT scan makes sense, to check the organs and such. I'm going to email my MO about it, was just curious if anyone else has experienced this.
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Thank you so much girls for your information. Am so sad about what is happening to my mother, but am so glad I found this community. I read you stories and you give me so much courage. ❤️
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@sondraf I was using these at physio for a healing ankle fracture for a few months prior to MBC diagnosis. I opted to stop using them. That's just me, though, I'd rather err on the cautious side.
Looks like I have a tumour in vertebrae C2. Radiation is a possibility to try to take care of that. We'll see what the RO says. What a location. If it were to break it would be known as a "hangman's fracture" apparently… some grim anatomy trivia. MO says I'm not in immediate danger though, phew.
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Brief update, not quite three weeks out from my thoracic instrumentation surgery:
Had my first follow up today, everything is healing well and sutures were removed. Doctor had to remind me that yes, my back is going to be sore and tight for a few more weeks, we did cut your back open, remember? My back gets tired after minimal things, like walking for ten minutes at a leisurely pace, or taking a shower, or doing the dishes. Or working on a jigsaw puzzle with my Mum, of all things! Laying flat for 20 minutes or so is very helpful, can't sit comfortably for very long so am constantly up and down, but lots of gentle movement is good.
Not feeling any worse, which is great, but progress is slow, feel perhaps 2% better today than yesterday? Maybe 3%, lol.
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@sf-cakes I’m so glad you posted an update. I’ve been thinking about you. I’m sure it’s frustrating that you aren’t healing quicker but your body has been through a lot. Slow and steady wins the race.
BTW, I’ve recently started doing jigsaw puzzles (hadn’t done one in decades) and now I’m hooked. I was up until 1:30 am last night and believe me, I’m usually in bed by 9:30-10:00. I’m usually the anti-night owl.0 -
sfcakes, it sounds like you’re doing well. Not quite three weeks is not that long! I can tell a difference in my leg from when I was only six weeks out of femoral rod surgery to how it feels now, four months out. What I realize is there’s a lot of healing going on inside that we don’t see but it is happening. Of course, not as quick as we wish! I, too, find shifting my body often and gentle movement helps as well as numerous breaks in the day to lay on the sofa. For the record, I never had back surgery but I no longer do puzzles because it hurts my back! Btw, were you able to ask your onc about having a bone scan next month so soon after surgery?
I’ve been able to walk more with my cane and less with the walker. I drove my car today for the first time in two months. I was grateful to finally get out on my own. I even went to the Y and joined a half hour yoga-in-a-chair exercise class. The instructor is a woman I went to school with and it was very casual. Plus the handicap placard dh got for the car makes life much easier!
I had a ct and bone scan on Monday. Bone scan results are not in yet. The onc NP called with results of the ct which had one concerning issue stating: right paratracheal lymph node measuring 1.1 cm, previously 0.3 cm. Differential diagnosis includes reactive versus metastatic disease.
So the increase could be caused by any recent infection or could indicate mets. Not sure what to think. I have not had any illness, other than four months ago having a pulmonary embolism when I was hospitalized for the leg surgery, which isn’t really illness. I have an oncologist appointment in 10 days, so I will see what she says. The NP said I could scan again in 2 months rather than go four months like I have been, so I will definitely do that. Sheesh. Always something.*
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Divine, thank you for posting about your experience with really noticing a difference with how you feel at four months post surgery. Getting out on your own in the car sounds heavenly!! I'm hoping that the increase in size of one of your lymph nodes is not mets, I know we all know that of course that's a possibility, but still hoping not for you.
RK, my Mum loves jigsaw puzzles, we ordered four new ones shipped to the house. I wasn't ever into it, but it is very easy to get obsessed! We kept saying, "just find this one piece" which of course is like eating chips - one is never enough.
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Divinemrsm how’d you go driving? Were you nervous? I felt like I was a new driver!
sfcakes how do you sleep?
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Margesimpson, sleeping flat on my back - there's no pressure on my spine and it's quite comfortable. I have a little wedge pillow under my knees. I should've made that clearer in my previous comments, realize now it sounded like laying down was also uncomfortable, that would be truly awful if I couldn't sleep! I lay flat during the day a few times for about 20 minutes when my muscles feel really sore, and that relieves them. But I can sleep for hours, thankfully.
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Thanks, I couldn’t imagine which position would be comfortable- The knee pillows are good at preventing too much movement. Im relieved you are able to rest without pain!
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margesimpson, finally getting out to drive my own car made me feel like an adult, lol! It felt like freedom, like being back among the land of the living. Even tho dh is always willing to drive me anywhere I need to go, no matter what time of day or how far, there’s still nothing like being able to get behind the wheel myself, drive where I want, see what I want to see at my own pace. Dh and I like listening to much of the same music, and we often sing along to all kinds of songs on the car radio, but also, being myself listening to the car stereo while driving down the highway is one of my favorite simple pleasures, so it was nice to finally be able to do that again.
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Ladies I am getting very anxious again. I have multiple bone mets. So far just in bones. (pelvis/hips tailbone etc)neck,,, So far the worst pain is in tailbone but manageble. when I am up and about I dont feel it mainly sitting. I am trying to stay active,but the Verzenio is making me tired. The last time I saw my oncologist she said she thinks she has to cut it down, My next appt is week after next with nurse practioner.Remeber I told you all that my oncologist is going out on disability,I think she is out. I see the new doctor in March. I just feel kind of in Limbo, I finished my dental work and want to start on the bone strengtheners. How do I know if I fracture or break something? Those of you who have multiple bone mets are you all active? Do some of you still work? I am getting very sad and depressed lately. I feel pretty good otherwise I just dont want to miss anything. I don't have anyone to talk to. I am the one people tell all their problems to and I don't want to bring anyone down, I feel very alone.
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jen1, I'm nearly nine years out w/ extensive bone-only mets (ER+PR-), no specific pains but plenty of general joint pain from anti-estrogens. I worked for five years after MBC diagnosis and could have continued to now, but Covid had shut everything down, so I'm glad I quit when I did. There is a lot to process with this diagnosis and plenty of scares along the way, but enjoy the moments of normality when you can and be prepared that you may well be at this for a long (long) time…
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Thank you cure-ious
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