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Sclerotic changes in spine

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Hi,


I’m new here, based in UK but reaching for a wider audience as I think our approach to follow up after primary BC is based on cost-effectiveness rather than comprehensiveness.


I had lobular BC last year: ER/PR+, HER2-, grade 2, 3.5 cm, spread to 3 nodes, LVI, perineural invasion. Treated by mastectomy and radiotherapy.
Had a DEXA scan recently, to check my bone density. Report said it was fine, but excluded calculations from 2 spinal lumbar regions as they showed sclerotic changes.


My understanding is that any bone abnormalities in a BC patient should be further investigated, to rule out bone metastasis. But my oncologist said we all have some form of change in our spine at our age (I’m early 50s) and so is not worried and won’t do any further investigations.

I also have a nagging abdominal pain for several months now. Again, they show no real concern.

But I am worried.

My question is this: does anyone else have experience of seeing sclerotic changes on a DEXA? If so, was is further investigated, and what was the outcome?

Thanks for sharing.

Comments

  • moderators
    moderators Posts: 8,285
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    Hi there, katone. We're so sorry you find yourself here with this worry, we know the anxiety of a recurrence scare can be overwhelming.

    We're sure other members will chime in soon with their advice and experiences, but we also wanted to point you in the direction of our Bone Health forum which, given your concerns and bone health changes, might be a good source of info and advice.

    The Mods

  • eleanora
    eleanora Member Posts: 299
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    Hi Katone

    I have MBC, with lesions only to my bones, including several in the lumbar spine area. My lesions were discovered and are monitored every 3 months by CT scans and bone scans, plus a recent MRI of the spine. All of my lesions are sclerotic, meaning that they have responded to my treatment (Kisqali plus Fulvestrant) and therefore nothing needs to be done other than continue that treatment.

    I am not a doctor, but from my experience and all of my research and reading, I doubt that a doctor here would rely on a Dexa scan alone. You did not mention that you are on a continuing treatment of any kind, which is something also common for hormone receptor positive BC in the US.

    There is a "Bone Mets" thread here on BCO which you might want to look at to see others' experience.

    Best,

    Eleanora

  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited July 2023
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    A dexa scan is not used for any kind of diagnostic testing although they will note changes if they see it. However, because a dexa isn't a clear x-ray due to low radiation exposure, these changes could be anything and more than likely represent normal bone degeneration. It reads like your oncologist is thinking that. Is he right? Should you have more scans to rule anything else out? Here in the US we might do more scans or if there are no physical symptoms of pain we might not. There is no way to know for sure what is going on though unless they do. However, it also may not matter in the long run if they choose to not do scans. If it is something else beyond normal bone degeneration, statistically speaking there is no such thing as catching it early. The medicine either works or doesn't. So if your oncologist wants to wait for physical symptoms of something else then I don't think you would be out of line to accept that. It's up to your comfort factor.

    Personally speaking, I'm not sure what I would do. However I hate scans so I can see just waiting to see what happens and assuming my oncologist knows what's best.

  • maggie15
    maggie15 Member Posts: 1,075
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    Hi Katone, Spinal sclerotic changes were noted on my DEXA scan which caused no alarm. About 4 months later I had a spine CT because of a fall. Sclerotic lesions on the spine were found but appeared to be inflammatory/degenerative to the radiologist. On chest CTs which I regularly have for other reasons a sclerotic lesion appears on my scapula, also determined to most likely be caused by inflammation. This makes sense because I take corticosteroids for an inflammatory lung condition. Also, I do not have the symptoms of bone mets.

    I did have an open biopsy of my jawbone done by an oral surgeon when a painful infection would not heal. It turned out to be osteomyelitis (infected bone) but the fact that strong antibiotics were having no effect made the oral surgeon suspect cancer. It turned out that I actually had breast cancer at the same time. I haven't met anyone else who was diagnosed by an oral surgeon.

    There are many causes of sclerotic bone lesions so physical symptoms/radiological evaluation are what determine further scanning. I used to live in Scotland and just as the NHS has prerequisites for additional testing, insurance companies in the US also have utilization management guidelines that are followed.

  • katone
    katone Member Posts: 7
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    Thank you so much for your helpful responses - so kind of you to take the time to write. It really does help to hear others stories. I felt reassured that it’s nothing to worry about…

    …and then I had an ultrasound for gyne reasons, because I’ve been having left abdominal pain which they thought could be ovarian cyst. Ovaries fine, but they happened to check my liver and incidentally found 2 spots. Small (5-8mm) and hyperechoic, from reading I think this means likely benign, but of course it’s reignited my fear.

    Waiting for MRI. But given spine changes and abdominal pain, I want to ask for a chest & abdominal CT too. Don’t know that I’ll be able to push for that, but my emotional health is so poor right now that if it gives me peace of mind - surely it’s worth it?

  • lillyishere
    lillyishere Member Posts: 775
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    katone, I learned the hard way that many pains in the abdomen, bones, etc. come from letrozole. Most likely, you may have these pains from meds. When I begged my MO to scan my back for terrible bone pain, he said that he will request it but I should not worry or get surprised if "stuff" will show up on MRI. And yes, there were a few areas that I got worried about. MO said it was totally ok and most people have sclerotic changes and other benign spots that scanning reveals.

    However, please follow up on the appointments.

  • maggie15
    maggie15 Member Posts: 1,075
    edited July 2023
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    Hi Katone, It's good that they are doing an MRI of your liver since you have abdominal pain and incidental findings on the CT justify further investigation. However, while you can ask, they may not scan your chest and spine since that is not where the symptoms are. There are private companies in both the US and UK where you can pay for "peace of mind" scans and a doctor consult but they are expensive and not covered by insurance. Also, it can start a cycle of wondering whether things are still OK months after having a clear scan.

    As Lillyishere said, the pain could be due to cancer treatment (AIs in her case) or something unrelated to cancer. If anxiety is negatively affecting your life you can ask about meds for that. I hope that they can find the reason for your pain and do something to alleviate it.

  • katone
    katone Member Posts: 7
    edited July 2023
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    Thanks maggie15 and lillyishere - yes I am probably being over anxious and of course I don’t want to waste anyone’s time, nor my own energy, with benign findings!
    Perhaps I should clarify that even though I was node positive, I never had a staging scan, and in fact all I’ve had is my mammogram and subsequent ultrasound to guide biopsy (and DEXA). Think that’s why my mind is in overdrive.

  • devoinaz
    devoinaz Member Posts: 40
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    Just reading tonight and thought I'd chime in. I had a sclerotic lesion on my upper femur that was found in a DEXA scan last November. They followed up with a regular x-ray (which showed the same spot - no surprise there) and then a CT scan with contrast after that. The radiologist decided my spot was a benign "bone island". This is what the doctors thought all along, but because I had just been diagnosed with BC in October, they wanted to check it out more thoroughly than they would normally.

    I looked at all the scans and wondered how they could tell if it was cancer or not. I looked in the literature, too, and really never could figure it out. I did learn in my reading that these sclerotic benign lesions are super common, especially in that part of our skeletons. That made me feel a lot better about everything.

    Anyway, I hope all your scans come back clear!!!

  • maude7646
    maude7646 Member Posts: 12
    edited July 2023
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    katone: I had a breast mri before surgery and they found 2 lesions on my liver that turned out to be hemangiomas (benign cysts). Had a CT chest after that because my MO wanted a baseline and a third larger spot was found, so had to have an MRI on the liver. Liver MRI couldn’t find the spot in question. It turned out to be an error on the chest CT (yes that can happen). So after several weeks of total panic and all those tests, it all turned out to be nothing! Long story short, it’s very common to have incidental liver findings that turn out to be nothing. I know it’s not easy, but try not to let the worry overwhelm you.

  • katone
    katone Member Posts: 7
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    Maude7646 - how did they know there were liver hemangioma? Were they able to conclude that from MRI?

  • maude7646
    maude7646 Member Posts: 12
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    When they first discovered the liver lesions on the pre-surgery breast MRI, they were almost certain they were hemangiomas, but recommended a follow up ultrasound in 6 months, just to be sure. Then, when the chest CT found the spot that didn’t exist, it confirmed that those 2 were hemangiomas. The liver MRI also confirmed it. So if I hadn’t had those other scans, it just would’ve been ultrasound. Does that make sense?

  • katone
    katone Member Posts: 7
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    Yes - it does - thank you!
    I’ll sit and wait, much calmer now, until my scans 🤞

  • threetree
    threetree Member Posts: 1,470
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    Just want to say that 3 Ritalin a day could be the cause of the weight loss.

  • recoveringbelle
    recoveringbelle Member Posts: 23
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    Hey! Thanks. I've been using Ritalin since 2012—has to do with the chronic fatigue intrinsic to severe EDS. :-) But instead of making me functional, it helps me do things like pull food out of the fridge (which could also be cause of weight loss—just total lack of energy to prep food.)

  • katone
    katone Member Posts: 7
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    Just to update, for anyone else with similar questions/experience:
    I had ultrasound of liver which showed cysts suspicious of mets. Urgent MRI with contrast - this showed…NOTHING!! Initially relieved, but now confused - I saw the cysts myself in the ultrasound, so why didn’t MRI detect anything? Do I take MRI as final conclusion, and trust that all is ok?

  • katone
    katone Member Posts: 7
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    @recoveringbelle - I think one of your posts has disappeared from this thread but I recall it said you have EDS, extreme fatigue, and high calcium? Someone close to me had the same, and was eventually diagnosed with hyperparathyroidsm (google it). It’s rare, and took some time to diagnose, but may be something worth discussing with your doctor. Of course this may not be the case at all, but a blood test for parathyroid hormone will indicate. And it can be cured. Just wanted to mention as I saw first hand how debilitating such symptoms can be, so feel for you.