Still Trying to find out if I have lymphoma 2 years on

Hi my name is Robert I am 28 years I old, I served in The Armed Forces and consider myself quite fit or at least I used to. I started getting really horrible symptoms in early 2013 I had throat problems, abdominal problems ,I even had a Colonoscopy and Endoscopy to check for any illnesses or problems with my throat or stomach I was eventually after months of endless doctors appointments admitted to hospital around October 2014, I was in for 2 weeks and missed my daughters birthday, anyway after loads of bloods and various tests I was told an infection of the throat and abdomen and sent home with antibiotics that tbh didn't work! Now by February 2015 I start getting swollen lymph nodes in my neck on left side going downwards from my neck along with some along my collarbone, I said to doctor but they were dismissing it as infections or maybe stress as I suffered from PTSD in the past. Fast forward 10 weeks I started getting really bad nightsweats and severe itching so I was recommended for an ultrasound of neck. They done ultrasound 1 week later and they found 2 enlarged lymph nodes on left side of neck and a 22mm nodule of my thyroid Isthmus. I had a fine needle biopsy 2 weeks later and it came back as inconclusive which I new it would have because their not always accurate. 3 weeks After that I was referred to ent for ct scan of neck to prep for surgery to remove only 1 lymph node and thyroid Isthmus. It took 5 weeks for surgery and both were removed and it took further 4 weeks for pathology results and it came back as benign for thyroid cancer and benign for lymphoma. I originally thought the full lymph node would be removed but obv not it was only part. By this time I was told loads on times its an infection of lymph nodes and it had been anxiety related which tbh as you all know that is rubbish. After this surgery I have felt 10 times worse all my symptoms are through the roof now and my abdominal pain just under my ribs now is really bad. My weight has plummeted to 8 and a half stone. I'm about 5'10 in height and usually weigh 11 stone and over past few year I've lost so much weight. Now months later I have been referred to another ct scan, though this time its a full body scan because my lymph nodes have spread to my groin and leg areas on both sides as well as my right side of neck. This ct scan has only took just over a week, they rushed it after a full body ultrasound and few blood tests,which tbh most of the blood tests came back fine except post surgery obv. I can feel in myself they were wrong diagnosing me but time will tell after next surgery!! everyone knows their own bodies and know when something is wrong I hope down the line there is an answer other than you have an infection or its in your head. U should always pressure doctors if you feel they are dismissing things to quickly because cancers like hodgins lymphoma can remain hidden. I feel for anyone who got the bad news,it is really horrible experience we have all lost someone down the line and no one should suffer.

6 Replies

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  • Yours has been a wild ride. Keep up hope and press on.

  • What a terrible experience!! Try to stay positive. I'm actually getting fed up with people saying this but it's all we can do.

  • You haven't said if you have seen a hematologist/oncologist. They would probably order a PET scan to give you a more definitive answer.

  • Consider going to a different hematologist/oncologist for a 2nd opinion.

  • I agree.try having a MRI dye pit in.that's how they found my cancer.l was also fighting fory health for 2yrs.all the best xox vicki

  • I was the same I was told bloods came back fine and the ones in my tummy where just big ones till I got breast cancer them they did biopsy with a fine needle I have to go every three months I was angry at first because I had to fight with them to get test if it was not for the breast cancer doctor I still would not know I had NHL I know myself I had something because every time I was in hospital they would ask me if I had blood cancer

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