On a roller coaster - An incidental finding

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cocomo
cocomo Member Posts: 7
edited September 2021 in Just Diagnosed With a Recurrence or Metastasis

I guess most can relate to the roller coaster effect between suspicion of recurrence/metastasis and diagnosis/treatment plan. After 9 years remission......... I have had hip pain for almost a year, from what is believably a pressure injury. Recently switched to new pain Dr for different/better? approach to pain. Pelvic MRI was scheduled at first appt. 4 pelvic bone 'lesions' shown. My oncologist ordered PET. Nothing shown in pelvic area; however, lesion did show in up in pectoral muscle (biopsy showed is cancer) and in a rib. Oncologist said I have metastatic breast cancer and I was put in palliative care; to be given ibrance, xgeva, and fulvestrant. Went for 2nd opinion, was told same thing. But somewhere along the line was referred to specialist breast surgeon; who said bone 'lesions' are very faint and may not be cancer at all. Said I may only have local recurrence; and, he is prepared to remove cancer as a lumpectomy (previously had double mastectomy). Next surgeon appt is in couple weeks, day after a previously scheduled repeat MRI w/contrast this time. Supposedly MRI w/contrast will show more clearly if it is; or, isn't bone cancer in pelvic area. Has anyone had something similar happen? Can MRI w/contrast show bone cancer better? Or, did you end up having/choosing bone lesion biopsy for a definite diagnosis?

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited August 2021

    Oh my cocomo.... the mixed messages with all the stress of recurrence! I cannot imagine! Thankfully there was finally follow-up even if local vs. metastatic. I sure hope it ends up being local recurrence for you!! Sending positive energy and support your way.... Please keep us posted....

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  • cocomo
    cocomo Member Posts: 7
    edited August 2021

    Thank you for the positive energy, LivinLife! Seems like oncologists would want to be absolutely sure before diagnoses. I will update once I get newer MRI results in couple of weeks. If hip area does not show definitively bone cancer, then from I understand, I will be having a lumpectomy a week later. Per surgeon, plan A shows just a lumpectomy, plan B is more detailed/involved, if needed. From what I understand, since the cancer is in the muscle, i might lose some use of my arm, with physical therapy possibly able to help. There are so many probablys, maybes, etc. BUT, a definitive diagnoses will be a great start!! Hopefully, just a local recurrence!

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2021

    Indeed, please keep us posted! We're really sorry that you find yourself in this situation, but know we're all here for you.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited August 2021

    cocomo, I have hip pain for over a year now and MO ordered MRI with contrast that didn't show cancer even though, I have ILC that can show up or not. I think MRI with contrast is very important vs. MRI without contrast.

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  • cocomo
    cocomo Member Posts: 7
    edited August 2021

    Thank you so much for your input, LillyIsHere!! That must be frustrating for you, to not know if your MRIs are showing correct results; since you have ILC!

    My pelvic MRI w/contrast is scheduled for Sept 9. Surgeon's preop appt (for pectoral muscle lumpectomy) is Sept 10. Surgeon already said cancer may not be in my bones at all. I wish they would include the rib in this MRI. I did message surgeon for his thoughts; because recently he said it was so small and faint on PET, it may not be cancer. Plus, from what I understand all the doctors at my new cancer facility work together. I just find it incomprehensible that my previous oncologist told me my cancer recurrence was not curable and inoperable and said it was metastatic, etc. with no other tests/scans; until, I said I wanted a 2nd opinion. Then, I started getting referrals; and, it may not be metastatic after all. Otherwise, at first, I accepted the diagnosis and agreed to start metastatic medications.

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  • cocomo
    cocomo Member Posts: 7
    edited September 2021

    Hmmm. My 9/9/2021 pelvic MRI with contrast showed numerous small bone lesions scattered throughout my pelvic area. =( NOW, I know why my hip has hurt constantly for a year. So glad I changed my pain clinic/doctor, who ordered my first MRI at first visit, before he would treat me. I mentioned my hip pain and asked if it could be my cancer returned to every doctor I have seen in the past year. No one thought it was. Wish I had insisted on MRI with contrast way back when it started. Shoulda/woulda/coulda.

    Having lumpectomy surgery next week to remove pectoral muscle cancer; which will be sent off to double check her2neu status.

    Hope radiation oncology will blast my hip pain areas so I can have pain relief.

    Cancer in pectoral muscle, one rib, and the multiples in my hip/pelvic bones. At some point after surgery, will start ibrance, xgeva, and fulvestrant.

    Guess I'll mosey over to the metastatic stage 4 group.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited September 2021

    Soooo sorry to hear all of that cocomo!!! Often docs are sooo quick to dismiss and don't know what they don't know...soooo maddening!!!.. I can validate your coulda/woulda/shoulda though I hope you'll be able to let go of that before too long.. your docs just weren't open to the idea of recurrence let alone a big test like an MRI.. Sooooo unfortunate to say the least! Hoping you get a good treatment plan put together soon and help for you pain. Support and hugs sent your way.....

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  • cocomo
    cocomo Member Posts: 7
    edited September 2021

    Thank you so much for the support and hugs sent, LivinLife. It means a lot to me I will keep you in my thoughts and prayers!

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