Feeling Ignored By Doctors - 3.5 year Survivor

Anonymous
Anonymous Member Posts: 1,376
edited July 2017 in ILC (Invasive Lobular Carcinoma)
Feeling Ignored By Doctors - 3.5 year Survivor
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  • bcsuperchick
    bcsuperchick Member Posts: 2
    edited July 2017

    Hey Ladies... I've had nearly every complication under the sun with both my cancer and reconstruction.... I was diagnosed Stage 3B ILC & IDC on my left side and I had atypia on my right. I opted for double mastectomy with expanders, chemo, rads.... had implants, implants failed... my incision ruptured, ended up having SGAP.... had seromas, terrible healing... pulmonary embolism from tamoxifen.... you name it! I've had it.... So of course I worry. Last year, I was diagnosed with sternal mets.... only later for my radiation oncologist to go... wooops, it is radiation fibrosis. Well my sternum has swelled ever since... it hurts, it's sore... My doctor claims it's just inflammation due to all the work I've had done. It hurts for water to run over this area... I also have had stomach issues for the past year or so! I send my doctor photos of my sternum... updated xrays from my chiropractor and he doesn't reply. I recently noticed an area of swelling on my right atypia breast... and she said just watch it.

    My cancer was undetectable on mammogram or ultrasound. MRI ultimately picked it up. I worry that the tests will fail me again....

    Is it time for new doctors? Are they truly just that complacent with me?

    Also my tumor markers, although still in the normal range... jumped about 10 points in April. They didn't even tell me... I asked them at my appt yesterday. I ended up having to text my doctor and plead with him to listen to me... I told him, I am NOT feeling well... so he obliged me and got me in.... they were supposed to schedule me for CT Scans. My appt was 7:55am yesterday. I have still heard nothing.

    I am feeling so ignored! I'm in the Charlotte area! If you have a doctor you'd like to recommend... either surgical or oncology... please fill me in. I think it's time I make a switch.


    ***I tried to post pics, but it's not allowing me to.... ***


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  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    like you I tend to be that one percent that has every medication complication under the sun occur. I see Dr. Gudena at the cone health cancer center in greensboro. We let him know upfront that I was there in that one percent that it always happens to and he has listened and followed through unquestioningly on ordering MRI/CT/biopsies and doing his best to deal with the side effects that they usually don't half to deal with ( like the pulmonary emboli and DVT from the tamoxifen, and now too much estrogen in my system).

    I guess my question would be if the doctor thinks it's from everything you've had done – if it only happened after that radiation that turned out to be unnecessary it's not from all the work you had done that from the radiation and what can he do to help fix it. Has he even prescribed any anti-inflammatories or anything for you? If not, then I would find another. (FYI-many MDs won't listen to anything you have to say about what a chiropractor has said or found. They don't believe chiropractic medicine is legitimate.

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