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audra (@ajnaudra)

Carcinoid Cancer and working

Neuroendocrine Tumors (NETs) | Last Active: Jul 31, 2018 | Replies (32)

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@hopeful33250

@ajnaudra Hello Audra,

I see that this is your first post on Connect, welcome!

I am a volunteer mentor for Connect and I have had 3 surgeries for NETs in the duodenal bulb. While I have not had the extensive surgeries that you have experienced, I can understand the problem of trying to work when you have chronic illness and all the symptoms that go with carcinoid syndrome. I, too, am a resident of Michigan, Oakland County, so we are almost neighbors!

What hospital are you being seen at? Who is your doctor? Also, have you contacted Michigan Vocational Rehabilitation? They can sometimes help train disabled people for jobs that are better suited for their health needs. I’m not sure how you get connected with them, but give them a call.

Also, regarding disability benefits: have you consulted an attorney or a advocate agency to help you get your social security disability benefits? They can be quite helpful (and persistent) at times.

I look forward to your posting again.

Teresa

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Replies to "@ajnaudra Hello Audra, I see that this is your first post on Connect, welcome! I am..."

Thank you Teresa. I live in Port Austin and travel 2 hours to Saginaw to the Covenant Cancer center. I see Dr Binu Malhotra every 6 months but receive Sandostatin every 28 days with bloodwork. I used to travel 3 hours to Ann Arbor but it was too far and really tired me out not to mention the shot alone was $20,000 per month and now it’s just over $500. I don’t understand that but whatever.

I have an Associates in Humanities and Social Science and another degree in Social Work. I suffer from Fibro so have not worked in quite some time. I don’t know if working would be harmful and make the tumors grow lessening the life I have left. That’s why I am seeking anyone’s insite.