Kari's Journey:

Patient: Cancer of Unknown Primary > Adenocarcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 7 years ago, Female, Age: 68

  1. 1
    • Kari
    • Experience with Adenocarcinoma, Unknown P...
    over 5 years ago
    Kari's Avatar

    Diagnosed

    Oh No

    Went to my primary care doctor for my annual exam (August 2010) which I'd been religious about for all of my adult life. I had no symptoms and no complaints and felt great. Having always been the "picture of health", was surprised when my doctor contacted me by e-mail after my visit, referring me to a hematologist/oncologist to find the cause of anemia showing up in my routine CBC. My blood counts had been on the low end of the spectrum for many years, but I never had any symptoms and no one seemed concerned. In fact, I felt great - exercised regularly, ate well, had plenty of energy, etc. He had just told me the year prior that I was "blessed" with good health. I took no medications, had low blood pressure, great cholesterol, and had maintained my weight within 5 pounds of what I weighed at 16. I went to the oncologist/hematologist who said my anemia was borderline and I could just come back in a few months for a follow up. An alternative to that would be to have an ultrasound or CT of the abdomen just to look around. After consulting with my brother-in-law who is a radiologist, I decided to have a CT of my abdomen/pelvis. There was no evidence of anything as far as my organs, but he called to tell me that my bone looked "mottled." I asked if that could be osteoperosis and he said no - that my bone was osteoblastic which could be caused by several bone diseases. He referred me back to my oncologist. After 3 bone marrow biopsies - the first inconclusive, the second showing adenocarcinoma and the third confirming adenocarcinoma - I was diagnosed with adenocarcinoma of unknown primary. Really? I was working out of state at the time I received the phone call and was told that because the cells were estrogen receptive, I would be prescribed an aromatase inhibitor. No real need to come home or do anything differently. I could just carry on and come into the office in a month to see him. Really? I went home, found a new oncologist and began pursuing finding the primary site. I had bone scans, PET scan, more CTs, upper endoscopy, breast MRI, and my third colonoscopy (I'd been getting them routinely since 50). Nothing showed up and the conclusion was that it probably started as breast cancer which just couldn't be detected at this point. Really? We can only guess?

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  2. 2
    • Kari
    • Experience with Adenocarcinoma, Unknown P...
    over 5 years ago
    Kari's Avatar

    Bone strengthening drugs

    Drug or Chemo Therapy

    I asked my oncologist about taking a bone strengthening medication and he said that "would probably be OK." I switched oncologists. My sister died of breast cancer four months before my diagnosis, had bone mets, and had been receiving an infusion monthly to help strengthen her bones. I read about the recent approval of Denosumab for bone mets which could be given by injection and didn't have some of the side effects of the drug she'd been getting. My new oncologist started me on it right away. I haven't noticed any side effects from it and continue to get a monthly injection.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • Kari
    • Experience with Adenocarcinoma, Unknown P...
    over 5 years ago
    Kari's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    I take hormone therapy - anastrazole (generic for Arimidex) orally once daily. It was difficult in a way for me to start taking the medicine because I felt fine with no symptoms. How would I know if my future symptoms were due to cancer or the side effects of the anastrazole? It can cause joint and bone pain just as bone mets themselves. I feel like I've aged 10 years over the last year. My hair is thinner, I'm not as strong, my skin has wrinkled and much of my muscle has turned to fat. However, I feel I can't complain because I'm still carrying on my life much as I did before. It's all just so surreal.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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