Hello, sorry for a long post. I have been undergoing tests for lymphoma since march after having noticed 2 enlarged lymph nodes in my neck in novemver and feeling stupidly tired all the time and finally making a trip to my GP. Other than the tiredness, I only had a cough which comes and goes at this point. My gp found more enlarged nodes throughout my neck including above my left collarbone so sent me for a neck ct, chest xray and bloods. Neck ct showed numerous enlarged lymph nodes, more had come up in the 2 weeks between my appointment and the scan, but it was 'inconclusive' as to whether they were normal or not, I guess due to the size. Chest x-ray was fine, bloods fine except slightly low iron & folate, and slightly raised ESR and TSH.Â
In April, I started to experience a dull ache and swelling above my left collarbone after consuming alcohol (by the end of my first drink). Was then referred to haemotology. My consultant said they felt very firm but they do feel relatively small, and she found new ones in my left armpit. Took more bloods measuring my cbc and ldh, not sure what else, and had a chest abdomen and pelvis ct. During this time, the area above my collarbone swelled so big an actual lump was visible, similar to when I drink but much bigger. It has since gone down but not completely gone away, and thensize seems to fluctuate.Â
i had an ultrasound done yesterday on my neck, which I was under the impression was with the aim to find the best/biggest one to biopsy. My biggest one was 3cm - this has definitely grown as it was so small back in november but now when i look up it sticks out (its kind of below my jaw to the side). It also does not move when i press on it. By my collarbone there were 2, but they were both much smaller maybe 1cm each, which shocked me due to this swelling i thought there was going to be 1 big one! The consultant radiologist said he thought they all appeared normal due to the shape and look of them, and for me not to worry, and I wouldnt thank him if he biopsied it. I am seeing my consultant on wednesday to get the results from my ct and bloods, but im worried because of the ultrasound that she may think a biopsy is unnecessary ... which leads me to my question, should I really push for a biopsy? Does this sound like it could be lymphoma - is the swelling around my collarbone this 'waxing and waning'? I know no one can diagnose me but just looking for advice. Im only 21 and have had months of uncertainty at this point, its driving me mad!Â
Hi em556 I am Mike Thehighlander and am dropping in past from our Non Hodgkin's Lymphoma Forum to say hi but I am sorry to see you find the site. Please understand that we are not medical professionals and only have our own cancer journeys to look back on so can't diagnose or give an opinion as to yes or no Lymphoma is the problem.
The simple answer to your question is yes, an incision biopsy is the only way to get a clear diagnosis as to if a type of Lymphoma is your issue. Yes a CT or an ultrasound can show issues but it's not conclusive so you need to keep pushing your medical team so you can get a clear answer.
If you want to edit your posts hit the MORE button at the bottom of your post.
Highlander ((hugs))
...... hi again. I do have to say that your questions and the story of what you are going through comes up on the Online Community a lot and I am pleased to say that a very very high % of folks come back to say thank you and it turned out that Lymphoma was not the problem.
Lets hope you do have a short stay on the site.
Hi em556, yes the waiting and wondering can be very hard. My type of Non Hodgkin's Lymphoma was presenting on my skin and I had no other symptoms, no raised nodes, nothing. My Dermatologist was sure I had a rare type of T-cell Lymphoma but it took a year and 6 biopsys and a few CT scans to eventually find a clear diagnosis....... that was 19 years back and I am still around today to tell the tail today.
Please keep us up to date with how you get on, but you may have to get your feet in the doors and have pointy elbows when dealing with your medical professionals.
Hi em I would take this as a result.
In my expereances if any of the nodes were seen to be an issue then a biopsy would have been done so keep an eye but remember that our lymph system is the safety valves for our body and lots of things....including stress and even alcohol can make them swell so try and turn the 'what if' levels down and focus on getting on with life, yes, you will still be looking over your shoulder but as time goes in the lengths of time will improve.
Highlander ((hugs))
Hi and welcome to the Online Community but sorry to see you find us.
So sorry to see the issues your daughter is having and the fact that you have found yourself on a Lymogoma support site would suggest that you may have some medical background or you have done an inline search. Raised lymph nodes can indeed develop thoughts of Lymohoma but at the same time our lympsystem is the bodies safety valve and these raised nodes could be reacting to so mant issues.
All you can do at this stage is work with her health professionals to gather the jigsaw pieces to get the full picture of what is going on with her.
Highlander ((hugs))
