Still paranoid...chets pain and more...?

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Nichola
Nichola Member Posts: 402
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi Girls

I had a 2nd recurrence to my chest wall (LHS of recon) last year (first was skin of recon).  Soon after, (July 2010) I had a head on collision whilst on my way to go on holiday (some guy fell asleep at the wheel)...and have since had 7 initial physiotherapies, 5 osteopath treatments and I'm on my 6th further physiotherapy treatment for whiplash.  Before Xmas I started getting chest pain on BC side and I then got pneumonia and pleurisy over Xmas which (nearly) came back again last month.

Because of worstening upper arm and shoulder pain my onc ordered a bone scan (January) which was clear, but even after all this treatment my neck and shoulder pain is persisting.  Also, recent  chest Xray (not CT) says my chest is clear yet I still have chest pain mainly on the LHS of reconstruction - mostly evident when yawning.  It doesn't seem to match peoples descriptions for costochondritis...and I just cant help feeling concerned as as I've had 3 x false negs on US/mammos so find myself not trusting even the bone scan or thinking maybe it's in hidden nodes to my neck etc., etc..

My question is whether any of you have experienced chest, neck and shoulder pain like this that didn't show up as bone mets and whether I should be reporting this to my onc again.

I would love to move on, but just can't as I keep getting wierd "symptoms"?  Physio says I'm an "unusual" case which doesn't help...!!!

Thanks in anticipation

Nx

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    Have you considered truncal lymphedema? I have costochondritis, which I fought as a diagnosis but finally gave in to. I also have LE on my LHS. You may have even the slightest build-up of fluid and the pain is quite impressive! Let us know how it goes....

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    Years ago I was diagnosed with costochondritis.  It never really went away, but was mostly no big deal.  It seemed to be confined to just one joint mid sternum, left side.   In October 2010 my T9/spine junction became inflammed.  I had a full body bone scan in November and everything was clear, with the exception of the increased isotope uptake at T9.  My CA 27.29 was only slightly elevated at 40, so the increased isotope uptake was assumed to be from inflammation.  In December or so I developed severe pain in my left shoulder (cancer side) and arm along with severe pain at all costo joints at the sternum on both sides.  Diagnosed by my GP as costochondritis, along with Bicep and Tricep Tendonitis.  I do believe I have Truncal Lymphedema as well.  Last week I had my routine labs done prior to my routine followup with my Oncologist scheduled this coming Tuesday.  He called my Thursday because my CA 27.29 is now 341.8.  I did CT's, and MRI and more lab and will find out the results Tuesday.  Since your symptoms are so similiar to mine I'll let you know what my Oncologist says!

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  • Nichola
    Nichola Member Posts: 402
    edited March 2011

    Thanks Barbe and Chele

    Barbe - I had forgotten that lymphedema can effect not just your arm....However pain in BC side area is not swollen and my shoulder and neck pain is the other non BC side...?  The reason I am confused about the costochondritis is that every thing I've read says it's related to the muscles attached to the sternum, where as this is mainly on the far left of my left reconstructed boob?

    Chele - please do keep me informed of your outcome... I've just had another lump removed which was thankfully benign, and that took presidence for a while so I can't bear reporting more probs if they are indeed just muscular related!!

    Nx

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    Nichola, arthritis (costochondritis) is very sneaky, like breast cancer and can present in many different ways. The reconstruction could cause LE too. Just a thought. Let us know how this all resolves.

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  • hereandnow
    hereandnow Member Posts: 322
    edited March 2011

    I'm wondering with your localised recurrences, esp chest wall, if you had radiation. You may be having some ongoing problems with radiation pneumonitis. Just a thought to ask your onc. All the best, I hope they find some answers for you soon.

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  • Nichola
    Nichola Member Posts: 402
    edited March 2011

    Thanksi Herandnow

    I had radiation 3 years ago (I was told even after a second recurrence that it wouldn't work again),  and I have looked up rad pneumonitis and it usually occurs within 6 months of rads and other symptoms so not sure if it would be worth considering?

    Nx

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    Nichola, I don't even want to tell you.  I've got mets to my thoracic spine, sternum, and probably the left shoulder (the one that is bothering me.)  The MRI confirmed the spine and sternum, we don't have the report from the full body bone scan, but my oncologist is very experienced at reading all scans and he thinks it looks like cancer in that shoulder.  I've been in physical therapy for 2 months trying to get my shoulder back to normal.  If only I had linked the pain to possible mets!  Go to your doctor gal, it's not worth the risk of ignoring it.  I just had my first full body bone scan three months ago and I was fine.  Amazing and scarey all at the same time.  I'll keep you in my thoughts and hope it's not the same for you.

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  • Nichola
    Nichola Member Posts: 402
    edited March 2011

    Thanks Chele

    I am gutted to hear that you are now stage IV.  I am praying that you don't have further progression....

    Please could you let me know what your bone scan results say....?  I am seeing an Orthopaedic Consultant as a follow up to the car accident at the ed of the month and in many ways I am hoping he'll suggest a MRi as they are the only scans I really trust!

    You are in my thoughts and prayers,

    Nxxx

    N

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    I'll let you know as soon as I get the results!   Call your doc, tell him what you want.  You've had a reoccurance so I think it wouldn't be too hard to convince your doc you want MRI's done.

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    Here's a scary little factoid.  The bone scan was absolutely useless.  Nothing was noted on it at all, just some degenerative changes.  Thank God my oncologist saw something on the CT's (that wasn't mentioned in the CT report) that made him order an MRI.  Good grief.  So, tomarrow I'm having an MRI of my shoulder done.  I've got an appointment Tuesday with the radiation oncologist.  If I'm going to get nuked I want ALL the parts to be nuked that need it!  I'll let you know what the MRI says.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    {{{{{{{{{{{{{{{{{ chele }}}}}}}}}}}}}}}}

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    Thanks barbe!

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    The good news the shoulder is NOT cancer!  Three different tendons have tendonitis, but NOT cancer! 

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  • Nichola
    Nichola Member Posts: 402
    edited March 2011

    Thanks Chele...that's a relief for you and me!  How are you getting on...?

     Big love 

    Nikkix

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  • chele
    chele Member Posts: 1,465
    edited March 2011

    I'm just fine and dandy.  I had my 3rd radiation treatment today and I'm continuing PT for my shoulder.  I should be good as new in no time!

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