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lyphoma???

joniewright
Posts: 1
Joined: Mar 2017

I have been dealing with this for 3 years now. It started when i had an ultrasound to check the thyroid bed. I had thyriod cancer in 2008. My thyroid was removed and so far so good. So on the ultrasound they seen some enlarged lymph nodes. We watched them then in 6 month one had incressed in size sent me for a FNB. They guy acted like he didn't know what he was doing. he said he wasn't even sure if he got the right one. So those resulte came back negitive. So then a year later same thing enlagred lypmh node on a ultrasound. They end up doing a PET scan. The lymph node light up. The doctor i was going to said it is nothiing to worry about that if it is lymphoma that it is slow growing. So I had another ultrasound 6 months ago and the lymph node had incressed in size and change fatty helium and now there was one on the left side to. So a new ENT end up doing a FNB on the one on the right. They didn't even get what they need to to test it. So had to go back the next week and have another FNB done. The results came back neg. So now las week had another ultrasound done. This one says Bilateral leve1b lymph nodes which are prominent in size with hypoechoic and thickend cortex. So now there is 4 lymph nodes that have incressed in size now on the right side and 2 lymph node on the left side that have incressed in size. All this time for 3 years i have had night sweats, faugtie, just not feeling well. In July 2016 i started lossing weight i lost 3 dress sizes from July to September 2016. I now have stopped losing weight as of now. I just don't know what else to do.. I was thinking about having them to remove a lymph node. Any help would be nice. 

Thank You

Joni

lindary's picture
lindary
Posts: 684
Joined: Mar 2015

If you aren't comfortable with how your case is being handled you need to get a second opinion. It is usually best to find a group dedicated to the treament of cancer with specialists for lymphoma.   Good Luck. 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi joniewright,

I agree that getting a second opinion is a good idea.

Good luck!

Sten

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3386
Joined: May 2012

Joni,

If indeed accurate, I've never heard of such a botched set of biopsy attempts before.

I would never return to your ENT -- start from scratch. Go to a medical oncologist for evaluation. ENTs (no pun intended) tend to antibiotic cancer patients to death. With your previous cancer history, all suspicions of cancer need to be  taken seriously. Get to an oncologist.

toolmantodd's picture
toolmantodd
Posts: 3
Joined: Mar 2017

We went to Cancer Treatment Centers of America, thinking we were only going for a 2nd opinion.  The first oncologist told us he was quite certain the lymphoma was a stage 1 & ordered a PET scan nearly 3 weeks ago and we still haven't been contacted by them to do the test.  Last week, we arrived at the CTCA on Monday, & was given the PET scan within 3 hours.....only to learn it was stage IV.  Run, don't walk to get that second opinion!!!!

lindary's picture
lindary
Posts: 684
Joined: Mar 2015

My oncologist is about 10 mins form our house. My primary dr was fairly sure it was cancer and thought it was lymphoma. The oncologist agreed and outlined a treatment plan. Her next thing really surprised me. She sent me to Rush hospital in Chgo for a second opinion. It's about 30 - 45 mins drive. He verified the diagnosis and explained more about the follicular non-hodgkins lymphoma I had. The best thing he told me is it is not curable but it is treatable. Once it is in remission my life will be similar to someone who had diabetes. I just need to keep my appts with my Drs and alert them if anything seems to have changed. I was told I was officially in remission mid-Nov of last year and have just finished my first year of Rtiuxan maintenance. 

I have the upmost confidence in my primary oncologist and my primary Dr. The way both of them handled my situation makes me love them even more. 

 

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