Bone mets??

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lorieg
lorieg Member Posts: 802
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Re-posting because I posted in the wrong section.  Sorry! 

I am pretty positive I am stage IV (see signature) although still holding onto a little hope that I may have bilateral breast cancer as opposed to mets.  My oncologist and my second opinion oncologist disagree slightly on this matter but at least agreed on treatment.

Anyway, I realize that scans would help me with this answer and this is a not very scientific poll, but I was wondering if those of you with bone mets can decribe what your symptoms were like, if you had any??  I have been having very odd back pain in my thoracic spine in a few spots.  I am 33 and have never had back pain other than a few minor sprains here and there and this definitely does not feel like a muscle issue.  The pain does not keep me up or really bother me at night, and it is not even significant enough to bother taking tylenol/ibuprofen, but it does persist when the other bone pain from the chemo has subsided.  I have had 4 rounds of A/C and am through two rounds of Taxol/Herceptin.  It started at least a month ago but was so intermittent I didn't think much of it at first.  I do have a 10 month old daughter  (and 4 year old son) so carrying them around may be part of this issue (I hope!).  I did discuss this with my onc who said we could get an MRI but he thought it was unlikely that I have bone mets since my bone scan was clean prior to treatment.  He also said that at this point we would still just finish the taxol/herceptin and so treatment now would not change although obviously it would change future treatment.  I decided to hold on the MRI and live in my little dream world where I do not have major organ mets yet, but this pain is nagging and annoying *mentally*.

Just also wanted to say that I frequent this forum a lot b/c in my heart/head I do believe I am stage IV, and you ladies are an inspiration! 

Thanks so much!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    Since you are still on the Taxol, can't it be that?  I had terrible bone pains and aches while on the four rounds of Taxotere.  They were really awful!  I had my last Taxotere Sept. 15, and no more bone or back aches at all.  Bet that's it.  Check with your onc - mine agreed it was the taxotere.  Best of luck to you - hope that's  all it is.

    Linda

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited November 2009

    lorieg,

      Please keep your hope up!!! I have had a lot of pain since I started chemo.  They have said I have nerve damage thet may or may not go away. You just have to wait unfounatly,cause it can get better. I still have pain in my back, hips legs, Which they think is nerve damage. I am in hopes I can get better, that is all we can do. I question now if I should have had chemo but having a 37% percent ratewith everything I have done ,it is the best thing I could do.

    I wish you luck and know that in most cases you do feel better!!!

    Keep in touch to let us know how your feeling.

    Bridget

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited November 2009

    Lorie,

     I sure hope its the chemo. I have mets in my 5th lumbar. My feet started hurting super bad and then a few weeks later ...I had sudden, severe back pain that no OTC drugs helped, went to get up and fell to the floor. Hubby took me to ER and the mass showed on a regular xray. My onc said this is a normal way for it to be found. Many other ladies had no symptoms and theirs was found thru routine scans.

    I am doing ok...and I pray you will be too. Hugs, Mazy

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  • americanpinay
    americanpinay Member Posts: 338
    edited November 2009

    My left shoulder blade started to ache while I was on Taxol. My last infusion was in March. That same spot still flares up. I recently had PET/CT, bone scan and MRI and all are clear. If I am to hazard a guess, your back pain is probably from Taxol. Good luck.

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  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    Lori,

    I am so sorry to hear you are going through this.

    I have bone mets to my cervical spine. I have had unrelated upper back and neck pain for years, since my early 20s. Carrying around heavy objects and stress always made it worse. I tried to figure it out, way back when, but the the only test available then was x-ray which showed nothing. Eventually I just gave up trying to determine the source.

    Earlier this year they found a local recurrence and sent me for a bone scan. It lit up and so they sent me for an MRI. It showed lots of arthritic problems in my cervical spine as well as a bulging disk that is causing spinal cord compression. And I have a slight scoliosis in my thoracic spine. Now I know why I was in pain for so many years.

    All these other problems made it hard for them to tell for sure if the lesion that looked like a met on the MRI really was one or maybe just more arthritis. Finally I had a PET scan which confirmed mets to the C-6 vertebra.

    So, back pain can have a variety of sources. Hefting around two little ones, especially a 4-year-old, could definitely contribute! But if the pain is new and getting worse it is definitely worth checking out. Better safe than sorry.

    In the meantime, definitely ask your doctor for something to take care of the pain. Tylenol with codeine has been helpful for me, and there is also stronger stuff out there. With all we are going through, there is no reason why we should put up with physical pain.

    Here's hoping it turns out to be nothing a little acupuncture wont take care of!

    Lisa 

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    I'm in a similar situation although have had a bone scan which came back with one suspicious area. I just had an mri and am playing the waiting game, certain it's mets but praying for arthritis!

    Tricia 

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  • 3katz
    3katz Member Posts: 1,264
    edited November 2009

    lorieg - are you getting neulasta or neupagen shots? That may contribute to the pain. Are you on a hormonal such as Tamoxifin? And as the others have stated, Taxol can be a cuplrit. Since you are stage III, are you getting regular PET/CT scans? It is good to know the pain isn't so bad that you require pain meds and that the pain doesn't keep you from sleeping. That's actually a really good sign.

    As the others had said, caring for your little ones may be a cause as well. Your body is going through trauma with the surgery & meds. Even though you are still young being only 33 (I HATE hearing about young women having BC!!) I hate to say this but you aren't getting younger Frown so there may be some aches developing over time. Did you exercise regularly but maybe not as much anymore?

    Don't feel bad - your fears are justified. I'm sure everyone has them and of course it is mentally annoying. But please don't sucumb to that fear of being stage IV. Maybe this is your body's way of saying you need some more rest. Try some stretching or even yoga. But be diligent with your onc about getting regular scans. I'll bet after you complete treatment you'll feel much better - it may take time, however.

    It is so sad to hear about young mom's battling this beast. I really don't know how you do it - guess you really don't have a choice. When I went through my initial treatment I was absolutely miserable and I don't have kids. You are actually an inspiration.

    Regular scans are important and your onc may just wish to wait until your chemo is finished. It was encouraging your onc suggested an MRI - that means he is listening to you. Every ache and pain does not mean mets but it is good to stay on top of everything.

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    Thanks everyone for the replies!  I really appreciate your encouraging words and that youtake the time to respond!  I have less than 3 weeks until my last Taxol and then I will be having a PET and a breast MRI.  I may even have a biopsy again to see what is going on with this breast because it is still very hard and has color change.  I was nursing at the time of diagnosis so we are hoping a lot of the breast has scar tissue/fat necrosis or something besides just cancer otherwise I have had an extremely poor clinical response.  I think that is what concerns me the most about this weird back pain....if I am not responding great clinically to chemo than there hasn't been much to keep this cancer from ravaging my body for the last 3 months.  My axillary lymph nodes are much smaller, that is the only good sign.  I think I may go ahead with the thoracic MRI when I see my oncologist next week.  I am already assuming its mets so might as well know for sure.

     Amy- yes, I am getting neulasta but that pain is very distinct and resolves in a few days (I know this from when I did the A/C).  I do have joint/bone pain all over that persists longer from the taxol but the back pain just feels very distinct and very different.  I was low normal body weight at diagnosis and now am a little underwieght (lost 10-15 pounds in the first week of my diganosis on the "OMG, I have breast cancer diet")  and can not put it back on.  I am eating healthy and exercising.  The fact that I can not seem to put on weight and keep losing a little also concerns me.  I think I will try yoga.  I have never been a fan but maybe it will help me now.  Thanks again for your response.  You are sweet!     

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  • hipchik47
    hipchik47 Member Posts: 268
    edited November 2009

    Hugs Lori,  I think about u and your sweet babies a lot.  That OMG I have cancer diet can't be good.  How about a few chocolate milkshakes a day ! Yum.Hugs Hipp

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    Thanks, Hipp :-)  I can think of a lot of unhealthy ways to put on weight!!  Chocolate milkshakes sound delicious!  Stupid cancer for making me want to eat so healthy!  One more reason to hate it!!

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    I talked to my oncologist today and am having a thoracic MRI tomorrow.  Thanks again everyone for the support!

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    Good luck with the MRI lori, mine was ionconclusive so hope you get some answer's:)

    Tricia 

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    Thanks again everyone for the support.  I found out today that my thoracic MRI did NOT show evidence of mets.  Not sure where my pain is coming from, rib/shoulder possibly, but for now I will take the good news!  I have hope that since my pain did start midline in my t-spine, and that was clear, that maybe the pain that seems to have moved more laterally is nothing as well. 

    Anyway, I will claim this small victory over cancer for today and worry about the rest tomorrow.

    Tricia, anxiously awaiting your results.  I am keeping my fingers crossed for you :-) 

    Nite all, and thanks again!

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    Good to hear it Lori:)

    I had no answers either but in view of my her2 status my onc ordered the pet!

    Tricia 

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