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Bone Pain from Mets or AI?

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I am recovering from my third breast cancer dx and have been getting numbness and pain in my ribs, legs and hips. It gets worse at night when I lay down. During the day it doesn't bother me too much or stop me from going about my normal daily activities.

I just had my normal bloodwork which was ordered by my cardiologist. He only runs a CMP and Lipid panel. I got the results today and all are normal.

Is it possible to have bone mets and normal CMP and Lipid tests?

My first reaction is to ignore the pain no matter how much it hurts at night. I have no idea how a doctor could tell what the cause is anyway and being on Letrozole, I assume I would be told it is from that. I was on Letrozole for 6 months in 2019 after ILC then quit due to increase in cholesterol levels. My cardiologist put me on the generic Lipitor but only 10mg, which apparently is enough to keep it normal. I went back on Letrozole last fall after second mastectomy, IDC and I am on my 6th month. Bone pain in legs/hip only started to increase about three weeks ago.

Are there differences in symptoms between bone pain due to mets and pain due to AI?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,947
    edited April 2023
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    It’s also possible to have bone mets and no pain at all and completely normal blood work. My point is that based on your symptoms there is no way of knowing what might be the source of your pain. I have never had pain from my bone met nor had anything show up in bloodwork (bc does not reveal itself much in bloodwork). A touch of arthritis is possible too. Potential bone mets can be explored with imaging but in any event please pursue this with your mo . Take care

  • mavericksmom
    mavericksmom Member Posts: 1,199
    edited April 2023
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    exbrnxgrl thank you! You are one of the members on BCO that have been so helpful to me, so many times, on various topics! You have no idea how much I appreciate and value your comments!

    I was able to move an appointment I had with my PCP for the end of May, to the 24th of this month. He is a great doctor and very thorough. If he thinks my concerns warrant moving up my MO appointment, I will. I kind of hate to take up an appointment with my MO if my PCP thinks it's from something unrelated to cancer.

  • sunnidays
    sunnidays Member Posts: 160
    edited April 2023
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    If it's worse at night or very early in the morning it's possible the bone mets, the joint pain from letrozole is more constant but at the same time not all day every day it's very difficult to explain the difference. I find over-the-counter pain medication, heat pads, and warm showers helpful plus stretching exercises. I have arthritis in one knee as well and that can flair up as well.

  • mavericksmom
    mavericksmom Member Posts: 1,199
    edited April 2023
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    Thank you sunnidays! Your information is greatly appreciated.

  • shanagirl
    shanagirl Member Posts: 370
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    I had bone pain for years after my treatment for StageIIIA …. I always thought my bone pain was a result of the Hormonal therapy I was on duringTreatment, or arthritis. My oncologist always ordered lab and work at each follow up visit every 6 months. If I had a specific pain anywhere he would schedule scans which never showed anything new. He also always included in my regular labs blood work Cancer Antigen CA27 Blood test which remained stable and low for 13 years. Then Last December it spiked from a stable low 26 to 84 which is high. He immediately called me and told me to come in for Scans he scheduled at the hospital..That’s when my bone Mets showed itself throughout my spine, sternum, ribs, sacrum hips & tailbone.. It explained a lot to me considering the pain I had been in for the last few months and not being able to even sit very long on a bar stool. I thought I was developing severe arthritis, but never thought it would be Mets because he was always checking my pain with scans, to ease my fears. But this time, cancer showed it’s ugly face in my bones….. the point I make is talk to your oncologist and his team. And stay up with your numbers on your bloodwork and your CA27 test. It will jump high if you have traveling cancer proteins in your blood test. I hope this helps.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Shannagirl, Thank You!!! I can't believe I just logged on and found your comment! I have only seen my MO a few times, next visit isn't until September. The bone pain has lessened, or I am just getting used to it, not sure which. It definitely gets my attention more at night. However, I don't feel well and after having three new breast cancer diagnosis in the last 20 years, I feel it is inside me somewhere.

    My new MO never did any blood work or tests/scans. I had a bone scan w/ contrast and a full body CT scan w/o contrast (due to very poor veins) in December of 2018 after I was diagnosed with ILC, nothing but a Dexa Scan which showed normal bone density, since.

    My PCP appointment in May was a disaster, it couldn't have been any worse, due to a series of unfortunate circumstances. My doctor told me upon entering that he would need to interrupt my appointment because his patient before me needed an EKG and he would need to go back as soon as the results came in. Completely understandable, I had no issue with that.

    Then he went right in to catching up with my breast cancer and treatments which included two surgeries. He was aware I was diagnosed again when I saw him last August. The hospital he is part of changed their computer program, now using MyChart, in November, and no one from his office loaded my information to the new system, so he had to do it. He is not computer savy, but neither am I, so again, I understood.

    He was interrupted my appointment as he told me he would. About 20+ minutes later, he came back and began to use the computer which of course he had to log into again due to the time delay. He became increasingly frustrated with the computer, back and forth from the old from my old chart to the new. Finally after another half hour he was done. Then he focused on my BP which was something like 140/70, which is really good for me. He thought it was too high. Understand that now he was over an hour behind his other patients.

    He finally turned to me and said " okay, do you have any questions?" Inside my head I heard myself say "tell him NO, he already took so much time with your visit," but instead, I said, "yes, the reason for my visit!" Then I tried to explain my leg pain and after a few questions he diagnosed it as "restless legs syndrome." He wanted to immediately put me on a medication that was originally prescribed for people with Parkinson's Disease, to which I said "No thank you." I quickly ended the appointment and left.

    I didn't feel comfortable with his diagnosis or the way he keep making me repeat answers three or four times!

    So I decided it was time to look for a new PCP. It turns out the same practice hired a new young female doctor, who used to be their hospitalist. She comes from a family of doctors and so I called to see if I could switch doctors and make an appointment with her for my wellness visit in August. I used the excuse that I prefer a female doctor for my PCP, which is true. They didn't give me any static about that, so on the upside I will see her in August.

    I have an appointment with my breast surgeon in June, so I will address the bone pain and my feelings of cancer being somewhere in my body and hear what he has to say. I know most likely the bone pain and pain in my gut are due to benign things, but I have heard too many stories from others similar to yours, shanagirl, and I would feel better if the very least, they ran a blood test.

    I want to say, I am soooo sorry you now have bone mets to contend with!!! I hope you stay in touch as myself and others here because we all want to know how you are doing! We all care because we understand due to experience!

  • jampus
    jampus Member Posts: 4
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    HI, my name is Josie

    I am a cancer survivor, stage 2 br ca, treated in 2012 and all good since. I am, however, not writing for myself. I just found out my 45 yr old niece in Cairo has been diagnosed with Stage 4 Br CA with hip and spinal mets. She went to Dr d/t back pain, so unsure how long she has had this. She is still waiting for the biopsy results and treatment plan. As you can all understand she is feeling shock and fear. I can help her to an extent, having been through the chemo, surgery and radiation myself, but the mets, is, thankfully for me, an unknown part of this. I was hoping for some advice in helping her. I have suggested she join this group, but not sure if there is an Egyptian site. She does speak fluent English and is hoping to be able to travel to England for treatment.

    I was wondering, Shanagirl, if you can let me know what treatment you had for the bone mets pain. Right now that is her biggest problem.

    Thanks, Josie

  • maggiehopley
    maggiehopley Member Posts: 116
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    Hi mavericksmom- I just now saw this post. We were on the surgery forum at the same time, I think. I'm sorry to hear that you are having symptoms. I hope your doctor's appointment goes well this month and that you have good news.

    I'll be thinking about you, maggiehopley

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Thanks Maggie! I am feeling hopeful that my issues are not from cancer. I see my BS in two weeks so I will have his opinion to sort this out. I trust him. How are you doing?

  • maggiehopley
    maggiehopley Member Posts: 116
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    Mavericksmom, I'm still in active treatment. I had a poor response to neoadjuvant chemo so after surgery I started 14 cycles of Kadcyla. I have 2 more to go, and I'm ready to be done. I've lost 15 pounds due to side effects. My MO threw me for a loop last month when she suggested I consider moving on to neratinib and doing that for a year. I had to take a leave of absence from my job (I'm a teacher) and I plan on returning in August. Neratinib causes severe diarrhea and there's no way I could manage that in my classroom. Fortunately, she asked the tumor board and they said no. Yay!

    I'm taking anastrozole (Arimidex) and having no problems with that but I will probably do Zometa infusions every 6 months because I already have ostopenia.

    My biggest issue right now is from my right thyroid lobectomy I had in January due to a large thyroid nodule that was found when I had a CT scan. Fortunately it was benign but I am still feeling, 6 months later, like I have a Lego stuck in my throat and I have some swallowing issues. I think this is going to be permanent :(

    I'm having a colonoscopy in July and of course I'm worried about that. I have never had one and I am 58.

    It's always something (or a lot of somethings), isn't it?

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Aw Maggie, I am so sorry to hear you are still in active treatment! I am supposed to have a colonoscopy in July too, but not sure that will happen at all. My veins are so bad from all my health issues, particularly the breast cancer, and they can't access my veins to put in an IV. I had a "virtual" colonoscopy in July of 2018, and nothing was seen. My gastroenterologist wants me to have another virtual colonoscopy, (same prep, no anesthesia, uses CT scans) at least that was what we discussed last year, but that was before my latest cancer fiasco. I can't lay on my stomach now and I don't think Medicare will pay for virtual colonoscopies. I hate when doctors tell me "they know how to code it so Medicare will pay for it" because who will end up with the bill if they don't? Me! I can't go to an endoscopy center as no one there can get a vein, so my only other possibility is having one done in a hospital setting. I know there aren't many gastroenterologists who do them in the hospitals any more.

    I am not calling about the colonoscopy, I will wait to hear from my doctor. My son and his family, who I haven't seen in four years, are coming in July for a visit, so no way am I scheduling any test, let alone a colonoscopy, before or during their visit!

    Please stay in touch. I really want to know how you are doing. PM me if you want to. I am 11 years older than you, and I had to retire from the school I worked at in February. I didn't want to but there was no way I could continue. I was not a teacher but I provided learning support for special education students in the regular education classes. I worked in a middle school, grade 6/7. I am glad that you will be able to go back to your job and NOT take that horrible medication! One thing I like about being retired is going to the bathroom whenever I need to instead of when I can fit it into my schedule!

  • maggiehopley
    maggiehopley Member Posts: 116
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    I will have my colonoscopy in the hospital, too, because I have a port. Even though they won't be using it, they require that I have the procedure in the hospital. My husband does, too, because he has a pacemaker.

  • mavericksmom
    mavericksmom Member Posts: 1,199
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    Good to know, I thought I was the only one who needed to have it done in the hospital!!!