IT has been a while since I have been on here so I guess I will just start from the beginning. I had some enlarged lymph nodes in my neck so went to doc and tryed antibotics with no change. CT scan was done and found enlarged mediastinal mass, had biopsy done it waas negitive for cancer. Now heres were the interesting part comes in, they tested for fungal issues sarcoidis, and many others. Everything was negitive so onc decided to just wait and do repeat CT in 6 months. I just had my CT done on July 6 and saw doc on the 8th, the results were that the mediastinal mass grew and they also found 3 groundglass lung nodule in right lung. Doc said we will do some more tests and then do another biopsy to look for cancer. I am very confused and not sure what this means. I was just wondering if anyone else has had some of the same issuses or am i just a VERY strange case lol. Is it common for lymph node biopsy to come back negitive?? Please any advice would great. Thanks!!
I would love to be able to help you but your situation is very strange. I would have expected the mediastinal mass to be cancer, how did they do the biopsy? If they only biopsied the neck nodes I would request a PET scan as this will light up any active lymph nodes. CT scans won't tell you everything they need to know for a diagnosis. And a needle biopsy is not enough to diagnose a Lymphoma.
Lymph nodes can be swollen and not be cancer so that is not so rare, they filter out infections in our body. I am really worried about the mediastinal mass that has grown. Are you in a cancer center where they do a loit of cancer biopsies? I would almost recommend another Hematology Onchologists opinion. And run!
I had a mediastcopy and they took samples from some of the nodes in that location. Everything has been negitive but now because i have new growt in my right lung and the mass has gotten bigger it has my onc confused as to what it might be. I have going to a cancer center since sept of last year when everything was seen for the first time. They told me back in sept of last year that they thought it was lymphoma but since biopsy came back negitive they tested for many other issues all negitive. My last onc told me that she thought it was histoplasmosis and if it was stable on my 6 month ct then it was nothing to worry about. Well my 6 month Ct was just done and now it is spreading and all the lymph nodes have grown some have grown almost 2cm. I have tried to have a PET done but my insurance will not cover it unless I have a diagnosis :( not sure what else to do. My last biopsy went really bad I had to wear wound vac for over a month because I had an allergic reaction to glue they use so docs are not wanting to do another one unless they have too. I am just afraid that if I wait four more months that it will continue to spread.
Thank you for your response... It is a very scary situation just wish doctors could figure out what to do and how to treat me. I am tired of every 3 months being told you don't have cancer and turn around and oh wait it could be cancer... But thank you again for your advice and help!!
Lymphomas are sods to catch, and Hodgkins even more so. You are looking for a few rogue cells in the middle of a lot of good ones, and they can move about a bit. I had the mediastinal mass. In ascending order of scar size, I had a bronchospy, needle biopsy, mediastinoscopy, then sixinchscardownthesideoscopy. All but the last showed nothing untoward, yet still I had the mass. A chunk of lung was examined, and there it was - Hodgkins lymphoma. I'm not saying for a moment that you have it, just offering a suggestion as to why you don't know what you have got yet. Don't let them forget you!
On the positive side, and this worked for me, you are 6 months down the line, and still with us. So it isn't growing quickly. But you need answers. Only a biopsy will confirm Hodkgins, and I think the same is true for NHL.
From first conversation with a doctor to handshakes all round was about 5 months, including the worst Christmas I ever had. I first felt ill in September 2001, then coughed a bit of blood one day. That had me running to the doctor. I was sent to see a chest specialist, via an X-ray. There was a mass on my chest. I had a bronchoscopy and a CT scan. The bronchoscopy fished out a few cells which were inconclusive. Next, I had a needle biopsy, which fished out a few more cells. These proved inconclusive. Next up was a mediastinoscopy. Here the surgeon pulled out a lymph node or two, and sent then off. The results were - wait for it - inconclusive.
In March 2002, I went into hospital whilst the surgeon tried to unwrap the tumour from around my vena cava. He couldn't, and took a slice of my upper right lobe of my lung, for frozen section examination. Inconclusive. The full path results came back a day or later. These showed Hodgkins. Only then could the doctors start work.
I could have been lucky with any of the first three attempts. It could have been a quicker process - the needle biopsy machine broke down on the evening before my appointment, right before Christmas. But those things apart, this was always going to be a marathon rather than a sprint.
Again, though, don't panic. You may not have this. I write this not to alarm you, but to illustrate the difficulty in coming to a diagnosis.
Frustrating goes only part-way to describe it.I am glad I am one of life's natural optimists. Not only is my glass half full, rather than half empty, but I've got a spare glass as well, and another bottle stashed away. Even so, it was pretty hard going at times.
I love cooking. My wife is a wonderful cook, but Christmas has always been my job, and illness would not stop me. Christmas day 2001, despite feeling exhausted, I spent the morning in the kitchen, and the table groaned under the weight as we sat down to lunch. I managed to nibble something, then left the family to it whilst I went in the other room with a sandwich and a glass of wine. I sat in front of the TV, and watched firstly Her Majesty's Christmas Broadcast, then the back of my eyelids. What a party pooper! But despite all this, I don't look back in anger or sadness, just gratitude.
The upturn only began, though, with the diagnosis, and that is the important point I'm making. It's like standing in front of a locked door with a box full of random keys. Imagine how you feel as each one is a failure, but think what it's like when the key turns and the door opens! Stick with it, my Confused friend.
I had a needle biopsy done on the swollen lymph gland on my neck in '09, which came back negative, so I didn't worry too much about it. The swelling got larger and became unsightly over the next year, so I had it surgically removed, at which time it came back positive for Hodgkin's Lymphoma. Three weeks ago I completed chemo, and will be starting radiation in a week.