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Evaluation process feels like living in a pressure cooker

Caralynn
Posts: 5
Joined: Sep 2017

Hi everyone,

I'm looking for some friendly advice on my evaluation process.

I started in January of 2017 with a swollen lymph node under my jaw, my PCP and I decided to try antibiotics and give it 6 months to go down. It didn't and when I came back In July for my f/u I told her it was bothering me it was still there, she felt around and found 3 very small lymph nodes under my left arm pit, one behind my elbow and a few in my groin.

She referred me to have an US of the one of my neck, and it came back abnormal, I was also referred to see a surgical oncologist who , in my opinion didn't give me a very good exam and sort of laughed off my lymph nodes because he said they were too small to be concerned even though I told him the last few months I've been having night sweats and fatigue. 

I was then referred to ENT to have a FNA of the node under my jaw looked at, and an US of my abdomen, ultra sound of my abdomen came back normal, no masses anywhere. Fine needle aspirate came back with a reactive lymph node no cancer findings. I also had a CT scan with contrast done on my neck, it showed multiple enlarged lymph nodes measuring 2.8 centimeters , compared to a CT done a year ago of my neck when I passed out, they haven't grown in size. My blood work was normal except for a positive EBV IGG and EBV EBNA, he said next step is to remove a few of the lymph nodes in the neck and biopsy them to test for lymphoma. I feel like I'm just getting on my doctors nerves but I wish they would understand that this has been really stressful because I have all these swollen lymph nodes and instinctly I feel something is wrong. My ENT keeps telling me I'm being paranoid. But I am just waiting on Pins and needles for him to call me back to schedule my excisional biopsy. Am I being paranoid? Or does this sound a little concerning? 

 

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

If I went to a physician who "sort of laughed off" my concerns, then another who made me feel like I was "getting on their nerves" and telling me "I'm being paranoid", I would of course, never return to their practice. Unfortunately, I have been to a couple of doctors like that. (There is one doctor is this town I wouldn't take a cockroach to). 

If I were you, I would re-focus on the ultrasound of your neck lymph node which came back abnormal. Also tell your GP about the visits with the doctors she referred you to. When I told my GP about my treatment at one of the doctors she referred me to, she was furious! 

Having said this, I have had superior health care and I don't believe any better can be had.

You will hear over and over in a health care setting, your must advocate for yourself. Or have a trusted person to advocate for you.

Best of luck, keep us posted?

Hugs,

Rocquie

 

Caralynn
Posts: 5
Joined: Sep 2017

Any insight or advice on how long this might take until they make a diagnosis? It's been about 2 months now of testing. 

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

There is no way to predict the timing for a medical diagnosis. A lymphoma diagnosis cannot be made without an excisional node biopsy. We all have and still do a lot of waiting. Try your best to live for and enjoy each day and resist worry for the future.

Best,

Rocquie

 

 

Caralynn
Posts: 5
Joined: Sep 2017

Well it was a good thing I went to a different hospital , I went to Hershey cancer center and the oncologist was great. Geisinger (who I was originally seeing, told me nothing showed up on my FNA and said nothing further needed done) well, Hershey read the FNA report and saw they didn't even run the agents to look for lymphoma, and the one they did run on the sample, the CD45, was 100 percent positive. I am.scheduled for a PetScan and bone marrow biopsy. 

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