Bone Mets below the knees

[B17865]

Does anyone have bone Mets below the knees? I’ve had unexplained intermittent right ankle pain for several months. When I told my oncologist that I want my next PET-CT scan to go to the bottom of my feet, she said that breast cancer doesn’t spread below the knees.

[Iwasborntodothis]

Yea, I think that's BS but my scans go full body because I had a malignant melanoma removed from my calf several years ago and the radiologist insists on it. So - I can't say that we've found anything with these extended scans but I fail to understand why that little bit of extra bone can't be scanned. It has to be insurance driven.

[Kerryd22]

I don’t think that’s right. My last scan talked of Mets from my head to my toes. Literally. I have a regular bone scan to check the entire skeleton as the CT is only interested in soft tissue.

Depending upon what treatment you are taking the pain could be a side effect. Or it might not be but I’m on Exemestane and I get heaps of pain from my knees down but it’s treatment related.

[wendle3007]

Maybe ask for a nuclear bone scan. This will cover your whole skeleton. You should be having one of these annually anyway if you already have bone mets

[Discocat]

I have bone mets from my skull to my pelvis...with pretty much all bones in torso affected. I don't have any mets in my arm or leg bones but I get full body bone scans once a year and a half in-between. I do get pains in my hands/wrists and feet/ankles but I think this is from the hormone therapies. I take Letrozole and have monthly implants of Zoladex which have put me into menopause....hence the side effects.

[kpgirl]

A visit to an orthopedic practitioner would certainly help determine the cause of your ankle pain and if he cannot figure it out, then he might request an MRI to be done. Maybe it's something as simple as needing an inlay. I also jump to the conclusion that every new ache and pain I have is cancer-related. For 6 months I had terrible pain in my left upper thigh, but it seemed to have just been a side-effect of letrozole/Ibrance and imaging showed nothing. At some point it just went away on its own.

I hope your ankle pain resolves itself, too!

[NPmary]

I know a woman on another social m e Dia site that did indeed have bone mets below the knee. When I was first treated for stage 1 BC I tried to take the aromatherapy inhibitor and could not tolerate the ankle pain the doctor dismissed me - now it is a known side effect.

[PJBinMI]

I could be wrong, but I think pain from bone mets is generally constant and not intermittent. I'm a long timer (19+ years with bone mets) and have often heard that bone mets generally don't show up below the knees or elbows. Do you have any "issues" with your feet? If I were you, I would talk with my primary care doctor and ask for help figuring out this pain. My pcp is really helpful. Also if you see a palliative care dr. or NP, they might help figure this out. With this lousy cancer, it's sure easy to worry about every little change in our bodies!

[Timtam56 in reply to PJBinMI]

I just want to pipe inn here and tell you PJBinMI, that I went undiagnosed with intermittent pain for 8months before I force my doc to get me a CT scan. He kept telling me that I didn’t have cancer because my pain (In my back, spine, ribs, head, shoulders, and hip) couldn’t be cancer BECAUSE it was intermittent and it moved to different sites. I am now being treat with Lyrica/Pregalbin, which inhibits neural pathway messages to the brain. It’s for nerve pain, and some of my cancer Mets are probably being caused by pressing on nerves. So we can’t make blanket statements like cancer “pain is generally constant.”. Just saying. I guess I’m a bit sensitive to misdiagnosis, and not being heard.

Also B17965. My sister died…… albeit many years ago…. With undiagnosed MBC. Her doctors spent 2 years telling her she did not have cancer. Her pain was all the way down her lower back to her knees. They opened up her upper leg and had to replace the long bone/femur, with a metal rod. But she was very far gone and there was not the research and wonderful drugs that we have now. It was 2007.

Some your pain could be what I have, which is osteoarthritis in ankles, knees, and wrists. I don’t know how old you are. But there is also the complication of ageing issues, due to age or overwork, and our cancer. Get a second opinion if you are not sure you’re being heard. And….. Sorry. This is long. I get a long bone X-ray and CT scan every 3 months. But i think things are different here in Australia.

Go well everybody. X

[Iwasborntodothis in reply to Timtam56]

Always good to see you here TimTam hope you are well.

[Bettybuckets in reply to Timtam56]

So sorry to hear that about your sister Miss Tam Tsm… glad you chimed in as as always good to hear from you!

[Roarlion]

I have never heard that breast cancer can’t spread below the knee. The PET scan does not scan below the thigh. I have cancer in my mid femur , it was not picked up on the PET . I complained of pain and we did an X-ray and it was cancer. I will ask my oncologist. My breast cancer spread to my eye ( very rare). I find it hard to believe that it can’t go below the knee!

[Eliactida1955]

So sorry to hear that . I have bone Mets but not below the knees and I haven’t heard of it. Cancer can spread everywhere but I hope you find out. I wish you the best.🙏✝️

[Godbeforme]

in 2018, I slipped in my kitchen and fell on my behind. my femur broke completely ABOVE my knee where it was weak because of the cancer; when they tested for BC they said it was in the bone. I'm writing to tell you that before this happened, I had been favoring my right knee, not because it hurt, just because something in me knew it was weak, I had remembered squatting down to get a book below the tv and using my left left to push up with instead of both legs, which I didn't really think about at the time, but after the fact. When they put the titanium rod in my leg from hip to knee, I went back to the ortho for a few months getting xrays to check on the bone growth. Right in the spot of the bone cancer where I had the break, the bone grew and strengthened around the hardware, etc. and I regained strength in that leg. Just something I found very positive. Hope this helps, although you asked about below the knee, I had never heard that ... cancer in the blood can go ANYWHERE is what makes sense to me. They may have the degrees but I have common sense. God bless you and heal us all in Jesus name, amen! <3 PS ... in 2013 I was told I had innumerous nodules in my lungs; here we are in 2023 and I've never had any problems with my lungs or breathing, I do not have asthma or any breathing difficulties whatsoever, what do you make of that? I had vaped before, maybe that had made the nodules, I don't know.

[diamags]

I get a full body bone scan and CT scan of the pelvis, chest and abdomin every 4 months. That covers any bone mets below the knee. I've been on this ride for almost 10 years and have never had a PET scan.

[DSmomCA]

Just finished radiation to tibia. We’d radiated lots of bone mets (ribs, back, femurs..) and still had pain in r tibia. Doc scanned it and saw tumor in that bone. They’d previously scanned only to knees, but thankfully believed me and she took a more comprehensive look. Just because they don’t “typically “ see met below the knee is not real. Insist they explore further .

[B17865 in reply to DSmomCA]

Thanks so much for sharing this with me. I’m going to show it to my oncologist. I’ve already told her I want my next PET scan to the bottom of my feet!

[love2golfwell]

The nurse practitioner at my doctor's office also said breast cancer does not spread to the limbs that is why they do my PET/CT scan from the base of the skull to mid-thigh. I am not sure if this is legitimate though. If you are very concerned you should push for the scan you want.