Bone Mets Thread
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Bev: Thinking of you... Hopefully the source of your pain was discovered. Healing wishes...
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Also thinking of you, Bev! Thank you for checking in.
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BevJen- Thinking of you. So the back pain issues was a right hip issue?
Snow-drop---Pocket duty for MRI tomorrow. Keep us informed of results.
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I am glad you are getting some attention finally Candy! I wish there were some kind of standard for imaging maintenance. I feel like so much is potentially missed arguing with insurance companies and waiting for symptoms to worsen. I hope you get some answers. I have found an orthopedic oncologist helpful to an extent. The ortho doc here is a turd and I refused to work with him because he is such a jerk to deal with. Unfortunately, the closest ortho oncologist is in Portland so I have only ever spoken with him over Zoom and he reviewed my films. He doesn't do much other than monitor at this point but where the local ortho was writing me off saying I had a huge met and seemed annoyed that I would bother him about it, the ortho oncologist thought it was a non-cancerous cyst and he seemed a little more in tune with what to look for in terms of bone mets.
KBL and BevJen hoping you both heal quickly also.
Question for those of you who have had mets to the C spine: I continue to have daily pain on the right side of my face, mostly around the ear but also in the jaw with daily headaches and nausea. I do okay for a while and then I just crash and can't seem to function with the fatigue, pain and nausea. It gets a little better with tylenol and ibuprofen and heat but doesn't completely go away. Does that sound like potential met progression to the c spine? I am hoping this is just a prolonged ear infection but I've done one round of antibiotics and the pain persists. I worry also about the Xgeva and osteonecrosis of the jaw and also thought maybe a brain met but the ONJ is so rare and I have no other neurological symptoms. My training has always taught me when you hear hoofbeats think horses not zebras, so I'm trying not to be too melodramatic with my self diagnoses.
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Thank you, emac. I have mets in my C spine, but I have no facial pain. I do have neck pain and have a hard time turning my head too far left or right. I wonder if size of tumors matter, though. I have ILC, so mine are more like webs and not anything that is big enough to press on nerves.
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Hi Emac,
There are some elements that do sound like an ear infection but I think you need a scan to rule out mets in the base of your skull. I have them and they were causing numbness on the side of my face rather than pain but... I also have c-spine mets.
The numbness was not severe so I took a wait and see approach. Then last July I started experiencing low grade headaches. By the end of August they were severe headaches and nothing would touch them including Tramacet. I wouldn’t be too bad when I first got up but by 11:00 AM I had a blinder. Could barely function. MO put me on a steroid and it brought an amazing amount of relief (sleep was a another matter - lord I had amazing insomnia for two months!). While scans were stable clearly something was up so my RO gave me five treatments to the c-spine and skull base. Completely resolved the issue.
Hope this helps. I didn’t have any jaw pain but those headaches? Wow
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BevJen, thinking about you and hope the hip op goes smoothly.
KBL, thanks for the info. I’m in Scotland and I do receive the benefits we have here....after a battle though, took over a year to get one of them!
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Karen, oh, gosh, I forget we are from all over the world. I should have looked that you were from Scotland. I’m glad you’re getting what you are entitled to.
Sadiesservant, that sounds so painful. I’m glad it was able to be resolved.
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Bevjen so sorry that you are having to go through all of this. Thinking of you and hoping the ops go smoothly and that you get the answers and pain relief that you so badly need
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you got this. Be strong. Be well. We are all praying for you
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BevJen I’m praying for a successful surgery for you tomorrow.
Candy, I’m currently doing PT for my shoulder as well. Before I got the cortisone shot, it was severe pain. I then did 15 acupuncture session that really reduced the pain and now I’m doing PT to get my range of motion back. It’s a horridly long process but things do get better. Hang in there with me as we do those painful stretches!
I’ve had some intense back pain for about two months. I thought it might be gallstones or my spleen, but my liver levels are normal. My latest bone scan and CT came back fine—no bone mets progression. So the thought now is that it is muscle pain (maybe from the Tamoxifen).
After PT last week, the pain was so intense that it felt like I couldn’t breathe. My chest also has a tight feeling. I felt like a hypochondriac but I went to the ER anyway to get checked out in the remote possibility that I had a pulmonary embolism. Good news was that everything basically came back normal. (Yay but also felt slightly stupid for going to the ER.)
The one thing that wasn’t completely normal was a high MCHC and an extended blood clotting time. My Activated PTT was 144 and it is normally 30. Does anyone else have experience with this while on Tamoxifen and Herceptin? Could this be a blood reaction to the Moderna vaccine?
My MO told me to stop Tamoxifen and I’ll probably switch to Anastrozole or Letrosole in a few weeks. He also agreed with the ER doc that I should see a doc that specializes in benign blood disorders.
I’m so ready to be done with all the doctors, tests, and pain (and my journey has only just started). I find great comfort and encouragement from all of you, especially those who have been living with this for years. You are my heroes
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Hey all,
I had a bone scan and they saw sclerotic lesions on the ribs and lower spine. Was going to get a biopsy and while I was waiting for it to get schedule, my onco did blood work.
He called and said that he saw no indicators on the blood work so he CANCELED THE BIOPSY.
I am nervous to take this good news on it's face value. While I would be thrilled not to be facing MBC, I don't want to go back in a year and find out I have new hot spots and that it was really MBC.
Also, the radiologist who did the initial CT with contrast saw a hot spot in the kidney and noted it, but the Onco say that it's so small (1 CM) that he doesn't think that they would be able to do anything about it so they will "wait and see".
Should I be getting a second opinion? Has anyone had "normal" blood work (the only thing that they noted was low VIT D) and turned out to have MBC?
Thanks,
Mth 2ME
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my bloodwork was all normal at diagnosis including tumor markers, calcium and alk phos
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The only thing that showed up on my bloodwork before my mets diagnosis was a slightly elevated Calcium level - nothing else. The mets showed up in a needle biopsy of a lump in my armpit. After bone and CT scans I had a biopsy of my L4 spine which confirmed the mets. My bloodwork has never seemed to show anything concerning with my cancer. I've never sought a second opinion, but I'd be concerned if I felt like my MO brushed off my concerns or what had showed on the scans.
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mth2me, while is trust a lot of what my oncology team says, finding suspicious spots in bones and liver without biopsy confirmation makes me nervous for you. Also, the spot on my bone that led to my MBC diagnosis was only 1.3 x 1 cm, so to me, they doesn’t seem too small to investigate further. I really hope it’s nothing but it’s always best to know quickly and with certainty. Good luck.
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Agree sunshine and I will add I had numerous bone Mets in several areas, both lytic and sclerotic which were seen on imaging. No pain, no red flags on bloodwork
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Thank you so much for your quick replies. I will call the office and request the biopsy. My family all cheered and were happy, but I don't trust an all clear based on blood work.
Thanks again and hope you all are well.
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Mth 2ME - I’m way behind in reading this thread so I may have missed some of your background. I will say that when I was DX MBC, I was taking Tamoxifin since completion of stage 2 treatment. My initial ER xrays and CT showed sclerotic lesions as well as innumerable lytic lesions in multiple areas. My blood work, including tumor markers, was in the normal range. Two months prior to my DX, my ca27.29 was elevated from where it had been trending for 3 years but still within the normal range.
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Mth2ME, for me, a CT scan showed a sclerotic lesion in my spine. My doctor ordered an MRI, said the MRI should be able to distinguish if it was cancer or not. MRI results were inconclusive. Having a biopsy was the only way we confirmed it was a metastasis. All my blood work at that time was normal. Please have the biopsy!
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Mth2ME,I will tell you I listened to oncologists tell me I didn't have cancer for six years. During that time, it progressed throughout my spine, in my femurs and bone marrow and into my stomach. I did have above normal tumor markers, and they just ignored them because they were all high. Duh! My lobular breast cancer only shows up on MRI.Anyway, all this to say trust your gut. Have the biopsy and don't take no for an answer. Better to have it and be negative than not have it and find out it's spread to an organ.
If your oncologist doesn't believe you can have cancer with normal bloodwork, show him what these ladies told you.
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Thanks so much for the info. My onco did say he would order an MRI and that would be able to tell if it was cancer, but it sounds like that's not necessarily so.
If the MRI is inconclusive, I will push for the biopsy.
He said that a bone biopsy is too risky when the blood work is not showing anything.
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Mth2ME , I have to add what others have already said - BLOOD WORK CAN BE NORMAL EVEN WHEN WE HAVE BONE METS. I had some spots on my C7, T11. Pain took me to the ER where an MRI confirmed the mets. I got the tumor marker tests and a complete metabolic panel and CBC. Everything was normal. My oncologist pushed for a biopsy of the C7 spot since it was very painful. And yes it was BC metastasized to bones. After that for 6 years, my bone mets kept progressing but the blood work was ALWAYS normal.
At that point the oncologist stopped doing the Tumor marker test and relied on scans only (She said "You are not a TM lady").
Please don't rely on bone scan and blood test - these are not relilable. MRI and a biopsy of the suspicious spot is the best way to rule out or confirm the mets.
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Mth2ME, this is what happened to me: When my first suspected mets showed up on a PET/CT they were in my bone, but they were in a place that was inaccessible to biopsy. Actually, the bone mets lit up on the PET, but the CT correlate looked benign. Because of that we did an MRI. The MRI looked suspicious, so two out of three imaging techniques looked suspicious, but we still could not biopsy. I had a treatment change and we planned to re-scan in a couple months. The scans a couple months later showed progression and further changes, an then we were able to get some more conclusive answers about the mets.
It's true that bone biopsies can be difficult. For me the "watch and monitor" approach was okay, and I assumed it was mets anyway so I wasn't really in limbo there. In my gut I knew, and a couple months later we got confirmation. Meanwhile, my bloodwork was normal and fine, so I don't think that alone is a good indicator. I hope that info helps you. I do think the MRI could help sort things out if the biopsy is not an option for you right now. Best wishes.
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One more thing for me. When I had a bone marrow biopsy back in 2013, they just pulled a random sample. Sadly, it was negative when I really was positive. Last year, I had a bone biopsy. Totally different experience. They did this one CT guided and actually pulled a sample that had a lesion. Came back positive for lobular, just like my stomach.
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Mth2ME, I am in total agreement with these ladies. I found my MBC by accident, 26 years after initial diagnosis with BC: I had at chest CT for an unrelated concern, and it reported "extensive sclerotic foci throughout the skeletal structure which has progressed significantly since the previous examination [the "previous exam" again for this other issue 8 months earlier and which noted, "multiple tiny sclerotic lesions which may represent tiny bone islands"] and is most suggestive of sclerotic metastatic disease". My PCP said it was likely either to be multiple myeloma, lymphoma, or most likely my breast cancer from the original bout, returned as MBC. She ordered an immediate bone biopsy. My MBC was confirmed by a bone biopsy of my hip.
My blood work was completely normal. No warning signs there.
I so hope that you will press for a biopsy, and/or additional scans if a bone biopsy is for some reason impossible, and find out for sure. You want, if possible, to get ahead of this and into appropriate treatment are as quickly as possible.
Please let us know!!
Sending hugs to you and your precious family-
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My issue started sometime last year, my doctor said its bursitis sent me for an x-ray which showed nothing then take an anti-inflammatory get some therapy for it all of which I did but in reality, I should have phoned the cancer center and they would have sent me straight for a bone scan which is what they did when I phone them eventually as it was not getting better.
I had a bone scan and a CT scan my oncologist wanted me to get an MRI but I am highly acrophobic so she said I could skip it. I don't suppose a few months make any difference as she said I have indolent disease which I think means it's slow-growing.
I now think it's better to bypass the local doctor and always go back to the cancer team.
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Looking for info. I have bone Mets. TNBC. Tumour markers were in 500s. Now 138. No scan but due soon. Will be 6 mos come May. Is that much of a drop a good thing? Hoping so. Praying yes. Thanks in advance for any info :-
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I would surely think so!!
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Thank you so much for your reply!! I would think so too, I would think that much of a drop has to be some type of positive. Praying hard that this is my remission drug. So need a break from chemo 🙏🙏🙏
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Sounds pretty positive to me! Hooray!
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