How was your bone mets detected?
I had triple positive IDC with LVI and micromets in sentinel node. Mastectomy, reconstruction, paclitaxol, and I finished my Herceptin Nov 2019.
I recently had an MRI for an injured hip (need hip replacement - not surprised). What did surprise me was the MRI revealed 2 indeterminate lesions in my L4 vertebrae. Today my oncologist showed them to me on the scan - very distinct, very bright, about 1 cm each. He has ordered an MRI with contrast of my lumbar spine to determine if these are benign or Mets.
Anyone have similar experience? I would have been less concerned if it were just one, but two...
Thank you in advance.
Comments
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Ms. Antrope,
Yours is not the same situation that I've had, but I would suggest that you ask your oncologist for a referral to a radiation oncologist to see if you can have those lesions radiated since there are only 2.
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thank you, BevJen. I do not know if it's mets yet - just know they are "lesions" and am in the awful waiting stage of another MRI and its results. Wondering if anyone found spinal mets incidentally like this.
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I have a single met to my upper femur that was discovered by accident on an unrelated PET. This was about 6 weeks after my bmx where I was Stage IIB (but only for 6 weeks😉). That was 9 years ago. I have been on AI’s only but did have rads to the bone met and it remains inactive. I have had no progression. The fact that you have two mets is not of great concern. That’s still low volume and considered oligometastases. If I remember correctly, my bone lesion was 2 cm so that equals your two! Take care
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thank you for your response. Can I ask if your markers went up with the bone mets?
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Not sure who you were asking. My doctors don’t use tumor markers.
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Thanks, exbrn- was asking anyone on the thread. My markers haven't moved and I had a clear bone scan a couple months ago. On Monday I'm having a lumbar MRI w/contrast to determine what these are. The waiting is as bad as it was after the first biopsy at my original dx....
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How did it turn out?
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Leg pain and aches that got worse by the end of the day. X-ray showed nothing. Pt made it worse and reverberated down the leg. CT, mri, and pet confirmed growth of concern.
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Hi, this is my first post here. I had early stage cancer treated with lumpectomy, radiation and taking tamoxifen, figured it was beat. There was nothing on my mammograms, no high markers, nothing. I was finally trying to move on. Then I had a backache that was blamed on other things until I had nerve zaps down my legs and my toes started going numb. Within a week I was mostly numb from my toes to ribs and losing motor control. The cancer filled an entire vertebra and compressed the spinal cord. This was 3 months ago. I had emergency surgery corpectomy and fusion. I've recovered enough to walk but not normal. The surgeon said he expected to see me hiking and I did last weekend. I want to know why they don't do any screening scans for bone mets, if it's so common. It shouldn't matter if the cancer was early and not in the lymph nodes. Cancer hides. This should have been caught earlier and insurance companies need to stay out of it. I'm mad at them for causing delays and calling things not medically necessary.
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yes, Mkestrel, mets can be very sneaky. I was Stage 4 from the start and if the lump in my breast had not made itself known, I would NEVER have known I had cancer. I had numerous bone mets including in the spine and I felt great and had zero pain. I hate to think how bad it could have gotten if I didn’t find the lump and then was fortunate that the radiologist thought she saw lung mets (which I don’t have) on my breast mri.
Only 20 to 30 percent of individuals progress from early stage to MBC, they say, but that is still a lot of people, individually
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MKestrel, they don't scan because there's no proof that it changes outcomes. Right now, the best available evidence we have is that unless a patient presents with symptoms, they should not be scanned. Scans carry their own risks and bottom line, is there is no evidence that it changes overall survival.
I hope you come join us on the bone mets thread https://community.breastcancer.org/forum/8/topics/...
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MKestrel,
My sympathies and I understand your feelings. As olma commented 20-30% of early stagers progress to metastatic disease. That includes mets to other sites, typically lungs, liver or brain in addition to bone. So though not an insignificant number, bone mets are hardly common amongst everyone who has ever been dx’ed with bc but common as a metastatic dx. Routine screening for early stagers is not usually done because the chances of finding mets is small at initial dx. I am not familiar with the follow up after early stage tx but I suspect that scans are not routine either.I’m so sorry you find yourself in this position. Take care.
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re follow up after early stage:
2015 Breast Cancer Survivorship Guidelines from American Society of Clinical Oncology https://acsjournals.onlinelibrary.wiley.com/doi/fu...
Laboratory tests and imaging Recommendation 1.3: It is recommended that primary care clinicians should not offer routine laboratory tests or imaging, except mammography if indicated, for the detection of disease recurrence in the absence of symptoms (LOE = 2A). Signs of recurrence Recommendation 1.4: It is recommended that primary care clinicians should educate and counsel all women about the signs and symptoms of local or regional recurrence (LOE = 2A). 0 -
Thanks for replies. That's my point, the guidelines and stats are wrong! I'll bet the recurrence rate is more like 50%. What would a CT in a year hurt? With an earlier scan or something, I would obviously still have the mets but dealt with earlier and not be sort of disabled like this. Bone only mets can be treated for a long time sometimes, and quality of life matters. I understand some of their reasons and I am very realistic about things, but I am also very angry. Get loud, ladies, if you feel like you need more imaging or something and they are blowing off your back ache. Who knows, maybe I will beat other stats too. Like a friend said, there's no expiration date on my foot.
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No, you most definitely don’t have an expiration date! It is so difficult to predict the course of mbc so we just carry on until we can’t. I have seen many folks live longer in the past few years and though that’s not a cure, it’s still progress. I am curious about how you know the guidelines are wrong and that the recurrence rate is more like 50%. Can you provide us with your sources?
CT and PET scans are hugely expensive with little benefit for the vast majority of early stage patients. A PET scan costs about $5,000. Health care is enormously expensive and though it shouldn’t dictate the care we receive the reality is that it does. I don’t know what the solution is for you or for any of us who find ourselves facing serious medical conditions and again, I’m sorry you are joining us.
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Scans should cost maybe $100. It's not new technology...price gouging 101. I question the stats because I have been a medical transcriptionist for 18 years. It's just my impression. In my opinion, if even one person can have a better outcome with a little more screening, then the guidelines are wrong. I guess I'm just ranting.
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No, you’re not ranting. In a perfect world we would all want that. However reality can be quite another thing. I believe you when you say a scan should cost $100. but IRL they don’t. I’m a pragmatist though I always hope for the best. What would be a practical way to give everyone access to every type of imaging or testing they wanted? Yes, current prices are outrageous but even if reduced greatly how would we, as a society, pay for it? If anyone can think of a workable solution to medical inequity and corporate greed, they’d have my support.
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See, I'm not sure we'd want all these scans anyway. They all have their own risks. Even the proof for mammography saving lives is shaky. Cochrane Review in 2013 concluded that the best avail evidence failed to show they actually saved lives. Lead time bias is a better understood phenomenon..... people are being diagnosed earlier so they're living with cancer longer, but they're dying at essentially the same time that they would have if they'd been diagnosed later. I think we've reached max benefit from screening (& we're seeing a lot of overdiagnosis) - we need to turn our focus to finding effective, curative treatments.
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After my experience, I felt like people in Stage 2 or 3 should at least be scanned at diagnosis - since my mets could have gone undetected, I wondered how many other people that might be happening to. Like, you could go through the early stage treatment and have mets and not know it. And maybe you choose less aggressive treatment because it seems yourrisk is lower at the time.
Maybe some Stage 3 people do get scans at diagnosis ? I'm not sure about that. But I was thought to be Stage 2 at first and my MO said I wouldn't have been scanned if not for the breast MRI looking funny.
Anyway, I hope in the future,medicine can get better at detecting risk so they know who to monitor for mets. I've seen talk about detecting dormant tumor cells and coming up with a way to treat them - maybe something like that.
It won't help us who are already MBC but could help others.
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Olma - I was suspected Stage III after initial diagnostics, which is what triggered the CT and bone scans I had. In the UK at least, if there is reason to suspect potential for mets at the start (when you get to the breast clinic), you will get scanned.
Kestrel - my mets are in three lumbar where the entire lumbar body is sclerotic and they aren't the ones that give me pain it was a sacral met that caused worsening mobility. However, with a long history of back problems in that area, I brushed it off for a long time. Here the GP system are the gatekeepers and there aren't comprehensive annual physical breast checks - unlike the US, I don't go for an annual gynae exam, I had to request a PAP, and even then it was take off your pants, lay back, and thats it, no physical breast exam. NO ONE touches you on the NHS at the GP level, like they will do everything in their power to not have to touch you. Healthcare is not some miraculous event in a socialized medicine country, its just a different faceless entity calling the shots, in the UK its a govt entity that authorizes the treatments and drugs.
Also, additional imaging tosses up incidentals that can start you down a whole other path that are likely to be wholly unneeded and just cause anxiety and greater cost for the patient as well. I just had my ovaries out and while they were fine, a small amount of blood vessel inflammation was found in a kidney (not cancer related). Great, now I get to worry about that in the back of my mind. MO is taking the watch and wait stance as I get imaging coverage of that area anyway so if it develops into something further it will get caught, but who knows, maybe it was vaccine related. My point is that increased medical intervention isn't always the best approach either.
I like to liken MBC as similar to a plane crash incident - in a fatal crash, there is no one single point of failure, it is made up of multiple tiny failures that line up in the right way at the right time to cause a crash. Same with MBC - a missed exam, a distracted doctor, a cell that decided to take the blood flume ride rather than via the lymph nodes, something at the biochemical level, etc. Some of it preventable, some of it not, some of it complete chance.
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I’m an accidental metster, i.e. my bone met was discovered on an unrelated PET while I had barely recovered from my bmx which was staged IIB. No symptoms although the met was already 2 cm. I believe I’m an example of the study that moth cited. Unless there’s a true cure, this will take my life at some point. The difference ? I will have known about it longer.
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I was stage 3 at diagnosis and had a bone scan. I had a couple bone scans since, due to aches and pains that were suspicious. I started having leg pain 3 years after my initial diagnosis. The MO ordered an xray that showed nothing. The pain persisted on and off, but I honestly didn't think it was cancer. It was only after it got worse, and I eventually had MRI and CT done, that we realized that the cancer had metastasized to the bone.
My MO said what others have said. They have a low threshold for scans but they only scan when there's a symptom of concern as they haven't seen evidence that the scans help. Rather, the scans often cause more anxiety, in addition to the exposure. I wish my metastasis had been caught months ago when the pain first started. Many people ask why my MO (very experienced, part of a top-rated university hospital system) ordered an xray and not a more detailed scan like a bone or PET scan. I think my pain at the time was inconsistent, and I really didn't think my cancer had come back. I didn't push for it. Obviously, in the future I will.
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Once you have been dx’ed with mets “pushing” for scans is usually unnecessary as your horse is out of the barn and any pain lasting for more than 2 weeks will be given attention. It’s scanning at lower stages that is not routinely done.
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Star2017, Did your bone scans ever reveal bone mets
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No, but the last one was nine months before I started feeling this pain (and almost 1.5 years before this new stage IV diagnosis).
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I guess I fail to see what "failing to save lives" has to do with it. Why are we treated so agressively then when they do find it. Maybe we wouldn't have to be so miserable from. Side effects if treatment weren't as intense and started earlier. Or maybe we could/ should put treatment; off till the pain is unbearable since they aren't really trying to save us anyway.
Yep a bit confused and scared here.
Gailmary
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I understand the not scanning at lower stages, but I kinda thought it would be beneficial to have one last scan when done with those 5 yrs of poison.
Some kind of follow up should be done. I believed if it came back it would be in the breast. I did the mamos. And regular primary Couldn't do a tumor marker test.
I just don't get it.
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Star, your story reminds me of my the x-rays I had that the PA thought looked good.. 3 months later the orthopedic oncologic surgeon saw it differently.
Grrrr. Still growling, sorry
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gailmary,
Finding mets early does not change ones treatment. Your tx is determined by factors pertinent to your mets. Also, tumor marker tests are not considered reliable across the board and many mo’s, including mine, don’t use them at all. Again, there is little evidence to support the benefits of early stage scanning because it prevents nothing in terms of mets. Lesions or tumors must have already grown to a certain size in order to be detected on imagingand that, plus a biopsy if possible, become the basis for treatment decisions. Very frustrating, I know but that’s what we have until better detection methods become available.
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I have an appt in a few hours to see yet another doctor. This is bone. I had Stage III 4 positive modes, in my lymphatic vessels and skin nine years ago. NO cancer in over 9 years but lots of pain and serious long SE. In just a few months I have come to the point I can’t walk from pelvic back hip and leg pain. They are saying osteoarthritis. This is unbearable. In less than two months I am using a walker. Two months ago I was rolling a ball to my grandson. Now I’m looking at a wheelchair. Does this sound right?? I have a bone island and a lesion in the hip. Please help!0
