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Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (410)
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@jhilbish

Thank you Lenora,
I have been trying to find a site where we could ask questions to people who actually have tis disease and I am so happy to have found you. We do need a back MRI as our Dr. said he should not have this amount of pain from the cancer. We need to get C/T scan results as well to see what if any the tumor's play a part in this. I almost felt like she was saying there should not be alot of pain associated with this cancer? What do find on the subject of pain and the patient's you talk to? It was also hard to hear as she had a mask on! She said perhaps the treatment might have to be changed, I have seen the targeted chemo/radiation and was wondering how people do with that? I know it is hard because it seems to affect every person differently. We are learning as we go but want to thank you again as so far we find your site to have a fantastic amount of info. on many different things, I wish we found you earlier. Again thank you and God Bless. Big prayers for all the warriors still in this fight! I am a 3x survivor and I always say, glove up, get in the ring and start to swing before the bell rings! Big hugs to you and everyone affected by this, have a beautiful day!
Joni and Anthony

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Replies to "Thank you Lenora, I have been trying to find a site where we could ask questions..."
Colleen Young, Connect Director | @colleenyoung | Jan 15, 2022

Hi Joni, it can be harder to understand people with masks on. Never be afraid to ask your doctor to repeat anything you're not sure you fully comprehended. A method I find helpful is the "talk back method". I'll say, "Let me see if I understood you correctly. You said that ______." Then I tell the doctor in my own words what I understood her to have said and/or meant.

The talk back method is really good because then the doctor can also see what gaps they may have left in their explanation or see if it was misinterpreted. Much more helpful that just getting them to repeat themselves. I do this when I accompany my mom to her appointments too, especially when I feel the doctor hasn't phrased things in non-medical terms.

I don't know your husband's pain or tumor, so I can't give you an accurate interpretation of what she said. But I think she may have meant that there may be something else going on in addition to the cancer that could be contributing to the pain. The MRI will give her a better picture.

What helps to alleviate the pain?

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