Long Road to Diagnosis and Still not There

In December of 2017, I noticed a lump on my neck. I had just started a new job with a 3 month waiting period on the insurance. The lump progressively got larger in the next couple of months and then I felt several lumps. I went to my doctor before I had insurance and asked about them. He said it was probably an infection and nothing serious but to come back in March once I had insurance. I came came to see him March 5, 2018. He ran bloodwork and ordered a CT scan. Cigna denied the CT scan as medically unnecessary. They said I could have an ultrasound instead. 15 days later. So I had the US. It revealed 9 large and abnormal lymph nodes in my neck. The report said there were indicators for lymphoma or possibly another metastatic disease. I had a fine needle biopsy of my neck which came back benign. Of course, I celebrated. My doc put me on antibiotics for 3 weeks to rule out infection. After the 3 weeks, I had another ultrasound to measure the nodes. Some had increased in size and some had slightly decreased. The report said that they couldn’t rule out a lymphoproliferative disorder. I went to see my doc for follow-up and he said it’s still possible that I may have lymphoma. I reached out to Johns Hopkins to a cancer clinic to see what they thought. They told me I need a CT scan with contrast. Unfortunately, my last blood work was 90 days old so I had to get new labs done before I could do the scan. They have to make sure your kidneys can take it. I’m hoping and praying that Cigna will not decline this CT scan. I have and advocate working to help me with that. If this CT scan is abnormal, Hopkins said they will see me. It’s been almost 3 months since I saw my doc on March 5th. I’ve never been referred to an oncologist although this whole time my doc hasn’t thought I may have lymphoma. I don’t understand why this is taking so long. Did it take you long time to get diagnosed? At what point did you get referred to an oncologist? Did you have a thin needle biopsy come back as negative and your doc still thought you might have lymphoma? Reeling from this rollercoaster ride....
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  • Can't comment on lymphoma specifically but I've heard/read many stories of young adults having it take awhile for their cancer to get diagnosed. Cancer or not I think it's important you advocate for yourself and make sure the doctors actually figure out what is wrong so you can feel better!

    In my case a dermatologist saw my melanoma several years before it was removed - I reported it may be growing and they thought it was nothing (partly due to age and part because it didn't display many of the other typical skin cancer signs) and sent me on my way. Once it was removed and found to be melanoma a few years down the road (by which time it was much bigger) I was given a PET/CT scan and sent to an oncologist. Even with the cancer center/hospital I attend I find I sometimes need to make calls to make sure things get scheduled in a timely manner and nothing falls through the cracks.
  • Thank you, Mishanne. I have been following up like crazy. Just frustrated to be months into this without a firm diagnosis and so little having been done. I’m not a young adult. I’m 37 years old. And I’m frustrated that cancer could be progressing in me and I can’t get help.
  • 37 years young! Young enough to fit the definition of young for young adult cancer here at least. I'm 31 myself so I've stopped thinking of the 30s as old ;) I hope they figure it out for you soon.

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