Fine line - "hypochondriac" or "being your own advocate"...

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wyattsmom
wyattsmom Member Posts: 33
edited March 2017 in HER2+ (Positive) Breast Cancer

I am looking for people who are ER-/PR- /HER2+ that have had a recurrence, metastasis to other areas and/or brain. I am curious how many people with our type of cancer develop metastases after clear NED diagnosis, and what were your symptoms, tests that found it and ultimate outcome.

I was diagnosed with stageIII A or B... ER-/PR- HER2+ breast cancer in 2009. Left breast. Chemo, lumpectomy, node removal, radiation, herceptin for another 6 months resulted in NED.

Mammogram 2012 showed atypical dysplasia in right breast. Ended up with bilateral mastectomy and DIEP flap reconstruction.

After a relatively good period of time not being scared and worried of recurrence, new symptoms have developed that has brought on a full-out obsessive concern of recurrence. I hate to spend any time (and money for that matter) worrying about recurrence because I know that we need to stay positive and my old oncologist once said "doing unnecessary scans and blood work doesn't affect outcome". However I don't want to ignore something that would result in extending my life. (If I would have acted quicker with my first BC maybe it wouldn't have been Stage III by the time we found it.) I think we all feel that way, don't we?

Currently have enlarged lymph nodes of neck on left side, gripping breath-taking episodes that last several seconds nearly daily on ribs extending under left breast, left eardrum popping, pain on the top of my head on the left side, periods of dizziness and some occasional confusion. Blood tests look good except for slightly elevated platelets and trace blood in urine. Scheduled for PET scan next Wednesday. I am concerned about brain Mets being HER2+ along with these other symptoms.

Anyone else out there with similar symptoms?

Sorry for the long post...

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    WyattsMom - I originally had a BMX for ER/PR negative DCIS with clear margins & clean SNBs on both sides, then reconstruction. Docs did not routinely test for HER2 expression with DCIS. I went on with my life - or as they say "fat, dumb & happy".

    On my regular two year check up, I had just found a lump under my collar bone. MO recommended CT or MRI. I requested immediate ULS & ULS biopsy if necessary. Turned out it was back & had changed to IDC, still ER/PR negative but confirmed HER2+. Although it was not really in the area where the breasts used to be, it was still considered a "recurrence" rather than a metastases.

    I had no other symptoms. I had chemo, ALND surgery, more chemo, rads, herceptin for a year. 4 years after that second diagnosis (2-1/2 years after final treatment) I'm still NED (again). I did push until I got a PET/CT last year which confirmed no new 'hot spots'. That was the gold star for me to move forward once again.

    I'll keep you in my thought this week. Hope your PET is negative.

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  • wyattsmom
    wyattsmom Member Posts: 33
    edited March 2017

    Thanks so much for sharing MinusTwo. I TRULY appreciate it!

    I was thankful that my new GP recognized that these odd stabbing breath-taking episodes I have are not okay. He called it serendipitous that I had two of these bouts while he was examining me. I call it a miracle! You know when there something wrong with your car but it never makes the noise in front of your mechanic? I was grateful he was able to see it in action! That's what prompted the PET scan.

    I'm sure there are many of us that would just like a scan every year or two just to be sure things are okay. I'm not looking for trouble but I'd like to head it off from becoming something we can't try to handle. Or even dare I say it... Have time to get your affairs in order.

    Thanks again for sharing MinusTwo! I truly appreciate the input and sharing of your experience!

    I'll post again when I have my results. Praying it's just an anomaly. :)

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Actually one of the ways I convinced my MO to order the PET/CT was to tell him I would go ahead and get my port removed (which he REALLY wanted me to do 2-1/2 years post active treatment) and not bug him for at least a year about more 'possible' issues. That year will be up in June and I've kept my part of the bargain. If he wants a CT in June, I'm not likely to agree unless the blood work shows problems.

    Hang in there. I had some "ground glass opacity" in my lungs for awhile that resolved, and what they were calling possible scar tissue even though I never had lung surgery. I hope yours will be an anomaly too.

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