BC spread while in chemo? neck spine ribs pain, ear pressure

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JMouse
JMouse Member Posts: 78
edited May 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi everyone. I'm still in primary treatment for Stage 3C ER+/PR+ HER2- breast cancer, and I've got symptoms that I'm afraid mean the cancer has already spread to my bones. Has anyone had these symptoms appear during (or after) treatment? How did you land on a correct diagnosis? Thanks for any help.

Before my mastectomy last October, I developed neck pain opposite to the side with cancer. My surgeon and oncologist dismissed it as an inflamed tendon (at the cervical lymph nodes). In February, about half-way through A/C+T chemo, the pain got worse and "spread" around my neck (to more lymph node regions), and from the collar to behind my ear. Then I got ear pressure and pain.

Also in February, I started to notice intermittent, initially mild burning sensations on certain bones: mid-back on one of my thoracic vertebra; on the ribs beneath my mastectomy especially near my sternum: and at my collarbone.

Now I'm in the midst of radiation treatment and chemically-induced menopause, and the symptoms are constant or just getting worse.

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My care team has tried all along to dissuade me from thinking my symptoms are mets because my initial scans (bone scan, torso CT, brain MRI) were clear. They think all my pains are due to that initial angry tendon and post-operative / post-chemo recovery. They also have discouraged further tests, because (1) it would interrupt care and (2) discovering mets would take away my access to the aggressive treatment I'm on now. (No really, I've been told this bluntly.)

The best I got was an x-ray of my ribs and spine (in April) before radiation -- no gross signs of cancer. My care team has pushed against lymph biopsies and PET/CT scans.

I've tried tackling these pains as non-cancer issues (physical therapy, anti-inflammatories, steroid and antibiotic, and so on), and I'm stymied. My family want me to stop worrying and complete primary treatment without interruptions.

And I think waiting is foolish... has been foolish and increasingly is foolish.

Please, any advice or personal story is welcome, even the scary ones. I just want to figure this out. Thank you. Sorry for the long post.

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  • xxyzed
    xxyzed Member Posts: 230
    edited May 2019

    I had all sorts of persistent aches and pains during my chemo and radiation treatments. I had many scans. Nothing was found. I have now finally two and a half years later completed all my treatment and magically a few months after completion am no longer taking pain medication to sleep at night and the aches and pains that I thought for sure were signs of something bad have resolved.
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  • JMouse
    JMouse Member Posts: 78
    edited May 2019

    xxyzed, thank you for replying (and for reading my ridiculously long post). Congratulations on making it through two and a half years of treatment and shaking off the scary aches and pains. That's amazing.

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2019

    I would keep a log of exactly what is hurting and when, and rate your pain day to day so when you see them you can share the information and figure out how to address it . If they do not want to to a PET scan, then see your PCP and see if he/she can help you get to the bottom of what's causing the pain.

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  • JMouse
    JMouse Member Posts: 78
    edited May 2019

    Thanks, KBeee. I've been keeping track and hope to get a scan soon... or some other treatment ideas. We've tried a few.

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