The Leukemia & Lymphoma Society - Fighting Blood Cancers
2 Replies Last post: Oct 14, 2009 9:19 PM by Sanddollar  
Lymph_Fear   3 posts since
Sep 27, 2009
Currently Being Moderated

Sep 27, 2009 9:55 PM

In Between Prognosis and Diagnosis...Confused!!

I am a 39 y/o male. Very active, athletic and known for healthy eating habits. For 9 months, I noticed that I had a large lymph node in left groin area and two smaller but swollen lymph nodes in right groin area, didnt hurt, didnt worry. (For the past two years, my lymph nodes would often swell and go down periodically. Sometimes lasting a few weeks or longer.) This time, three remained swollen for all these months. But, no pain. Two months ago, I had sudden pain, swelling of testicles and hematura. Thinking it was kidney stone, primary physician put me on strong antibiotics, swelling didnt go down, still lymph nodes didnt hurt yet remained swollen. Only area surrounding them hurt, plus periodic bleeding. Pain radiated to my lower back and legs. Primary physician put me on second round of strong antibiotics for possible infection in lymph nodes. Still no change. Then, he asked me strange questions in which i answered yes to: Night Sweats? YES, Fevers? YES, Increased Fatigue? YES, Suden weight loss? YES, Rashes? YES, Loss of appetite? YES. Little did I know, that these were signs of what he called Classic B symptoms. After he spoke with my wife, he realized that i had lost over 30 lbs within a few months - something i attributed to great diet and exercise and smaller portion control, WRONG - I would also drench the bed in sweat each night or every other night, so bad that we would have to change the sheets and I would have to change my clothes a couple of times - thinking it was my metabolism with my new fitness regime, that I went from being hyper energetic and sleeping 6-8 hrs and night to sleeping 12-18 hrs a day - thinking my intense workouts exhausted me! WRONG! Since then, I have seen mulitple doctors, who have given the same prognosis, LYMPHOMA; yet have yet to come up with a definite DIAGNOSIS! We were referred to a surgeon who did not want to excise the lymph nodes until he ran a long series of tests ruling out everything infectuous and viral. All reports came back negative. The left groin lymph node was larger by this time and he wanted to excise it as soon as possible for results. He was sure that he would find Lymphoma and prepared us for it; it was a matter of the type or lymphoma. The biopsy came back inconclusive. However, two days following the surgery, I ran high fevers (while on purcocet), developed chills, headaches, inflamed/swollen lymph nodes over my entire body and a general feeling of extreme flu-like symptoms. The oncolgy surgeon's partner was on call and after reviewing all my records and tests he called my wife back and stated that the only thing he could say was that the Lymphoma was manifesting itself, keep taking the percocet and wait until i could go back to see the surgeon. We did this after I felt a "little" better. By this time, my lymph nodes were down, and the original that were remaining were back to being slightly swollen. The surgeon had no answers. He sent me to a hemotologist. In the meantime, I have had even more tests, more blood work and inconclusive is the word of the day. A close friend of ours who is a nurse practitioner and worked many years in as a chemo-nurse asked me about the antibiotics i was on. I said yes, they put me on a third round of antibiotics just before my biopsy. She stated that after three rounds of antibiotics, it could easily have been a false-negative due to them being in my system. I have since then asked each nurse or dr i have seen and they said it was very likely. However, the hemotologist out of the 6 dr's i have seen, said it was virtually impossible for that to happen. I find all of this confusing, have gotten no answers, cant run, exercise or do normal things because of the fatigue and am getting no answers. They have now sent me for further tests of Eptstein-Barr, Lupus and other things they have not yet tested for. Has anyone ever heard of it being this much of a roller coaster ride to find a diagnosis? They even sent me in to have a mole removed that could possibly be melanoma. It came back negative. We have been through the ringer and experienced all the emotions of those who are diagnosed because of the information we have been given and yet have no definite answers. I am afraid that when it manifests itself, if it truly is a form of lymphoma, it may be in late stage. Can anyone add to this concerning thier search for an answer of some sort? I have yet to be told i DO NOT have lymphoma, I just keep getting told I have to be patient they will figure it out. Two months have passed and i have lost 15 more lbs, can barely eat and remain nauseated and fatigued if i push myself too hard.

debwitter   8 posts since
Oct 11, 2009
Currently Being Moderated
1. Oct 14, 2009 1:39 PM in response to: Lymph_Fear
Re: In Between Prognosis and Diagnosis...Confused!!

I read your post.  What a drag to go through such a problem and not get any answers.  Here is a link to a website that has lots of information regarding the lymphatic system. http://www.wrongdiagnosis.com/sym/swollen_lymph_nodes.htm It seems to be very thorough.  This was the only thing I could think of that might help you. 

 

Maybe going to an alternative doctor would be helpful with the symptoms. 

 

Good Luck.

 

Deb

Sanddollar   6 posts since
Apr 15, 2009
Currently Being Moderated
2. Oct 14, 2009 9:22 PM in response to: Lymph_Fear
Re: In Between Prognosis and Diagnosis...Confused!!

Hey,

 

Hopefully this will help you. I've been on and off these boards for 5 years and had the same situation as you (my user name was different before they changed the boards to a new format).  Anyway, my situation was not lymphoma but "there's something wrong with your blood" and what looked to be an early myeloid leukemia.  Due my family history of cancer (mostly leukemia . . . 3x in 2 generations), I was watched closely.  I had two BMB about three years apart with notable changes to the cells and I had an abnormal flow cytometry indicative of a chronic myeloproliferative disease.  But no monoclonal cell.  It really baffled them.  Shortly after the second BMB, with a referral to yet another hematologist and yet another CT scan, I started asking "are you sure this isn't something like Lupus?"  I had been tested with ANAs every year for three years--the test coming back negative every time.

 

Two more years passed, my ANA finally popped and I developed photosensitivity (a rash you get when you go out in the sun).  They finally determined it was not my blood but my immune system messing up my blood, causing stress on my marrow which makes my blood cells look slightly abnormal and, at times, throwing of the counts, along with swollen lymph nodes, night sweats, chronic low grade fevers for 5 years, problems clotting (delayed bleeding), fatigue, rashes (other than the photosensitivity), and inflammation to my spleen and lungs.  They are fairly sure it is connective tissue--most likely Lupus.  Just a note, it takes 4 to 10 years to diagnose most people that have autoimmune diseases.

 

I hope they figure out what is wrong but, remember, autoimmune diseases like Lupus are called a "disease of a thousand faces."   I also hope for your sake it is not Lymphoma.

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