We must become advocates, all of us: 3

Asking Questions

Today I started being my own advocate, by asking questions.  I told my oncologist I wasn’t satisfied with the explanation he provided for why he didn’t order the Gallium 68 scan.  I asked that he refer me to a nutritionist.  Finally, why was an octreotide scan and 5-HIAA test never ordered.

Why order a PET scan to search for other tumors when he said the scan wouldn’t reveal anything.  Why waste resources when you know the results will be inconclusive?

Its unfortunate when it feels like your oncologist ignores your requests and questions. Its not very pleasant when you find holes in the data given to your by your health care provider and its scary when you are losing faith in the treatment you have received.

To be fair we’re all human, we can only know what we know. People can only do what they can do.  I could sit here all day wondering if things would’ve been different if someone suggested to do this or that, but if things were different, things would be different.  There are moments when I get angry, but unrefined anger doesn’t do anyone any good.  Anger filtered through a lens of critical analysis can give us the outrage we need to change something.

I have initiated change, I asked the right questions but now I feel depleted.   It took so much to stand up and ask my questions that I don’t have the energy to hear the answers.

I’m not happy with my doctor, that doesn’t mean he’s a bad doctor or person. Simply put we just aren’t a good fit right now. I assume that he is a competent, friendly and a passionate person, but I need more.  I need a second opinion from someone who specializes in NETs.

asking questions

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13 comments

    1. I checked out Siteman Cancer Center, they do not accept my insurance and they were very disrespectful when I contacted them.

      Currently I am investigating options out of state.

    1. Carcinoids – Neuroendocrine tumors. Stage IV when diagnosed. Source tumors at small and large intestine junction, both lobes of liver totally covered, tumors in both ovaries and uterus and lymph node under sternum. Got into my tricuspid valve in the heart, so open heart and valve replacement 2 years ago. Tumor activity major amped up lately – things are kinda caving in. Sucks!

      1. I wrote about the experience, it should be on the site soon. Recently, after standing up to my doctor he has begun sending me out for the tests and scans they should have before they cut out my lung. I will be Wash U next week to get my Gallium 68 scan. Late is better than never. Having the ability to look in hindsight will be a valuable tool to try and prevent others from entering the nightmare of ignorance that I dealt with.

        Is yours typical or atypical?

  1. My experience has been the reverse…..tests all over the place!! Have had so many of the 5HIAAs….octreoscan as soon as I showed up at Siteman. Scans….
    Typical/Atypical are not words that have ever been shared with me by any of my docs.
    Inoperable is the one I hear.

    1. Well that’s unfortunate, fortunately you have found yourself some doctors who have an awareness of your cancer.

      It is a terrifying moment when you lose all confidence in people who have poured chemicals through you and chopped out your lung.

      How did you find out about your cancer and where to go to seek proper treatment?

      1. Found out quite by accident – tumor bulge from the masses on my liver were visible just by looking down. Colonoscopy and biopsy determined it was carcinoid tumors in my intestine …. scans after that lit up as they do with this kind of cancer. Sandostatin injections were started.
        I went to that local group meeting this afternoon. Turns out I am probably not going to the right place for the optimum in treatment, based on others there and their experiences and where they have gone. Crap way to spend an afternoon – I will be doing some research and talking to my insurance company. There were some nice folks there.

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