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starting on the journey to diagnosis

Posts: 1
Joined: Dec 2013

Hi there so glad I found this place , I am 35 years old and for the last year I have been having a,range of non specific symptoms. Chronic fatigue total loss of vitality, generalized itch which is worse after even a glass of wine, very achy body, pain in the pelvic bone, and lower right sided abdominal pain which feels like pressure and can be unbearable! Loss of appetite, have lost 10lbs over the last month, and a pea sized firm, immovable node behind my right ear . I'm really scared, my doctor ran bloods which were normal, and was putting it all down to a busy life or maybe depression, I felt really upset by that as I feel so unwell it's so hard to explain it I feel something is wrong. Since the node came up she is taking things more serious as lymphoma may be,a possibility and wants to send me to an ent as I have trouble with swallowing certain foods at times too. I'm scared about the tests about the diagnosis I'd love to hear some stories about your road to diagnosis xxx 


Posts: 107
Joined: Feb 2007

Have you had a blood test for ANA, SS-A and SS-B?? The thing with blood tests is knowing WHICH to run.

I have Sjogrens "which is an autoimmune disease" and it can add to or "piggy back" other autoimmune stuff.  I had the Sjogrens for about 10 yrs prior to being diagnosed with B-cell Lymphoma of which I completed treatment with 6 rounds of R-Chop and 1 month of methotrexate spinal shots in 2012.

Sjogrens main symptoms are dryness and fatigue but it is very individualistic and does have "other stuff" thrown inthere. My teeth went from healthy to pot in 3 years due to the dryness. I'm a member on the Sjogren's website and you might check it out. Great group of folks there.

Also I know the partroid gland "right below the ears" can get blocked and need to get flushed. I've had that happen to me though antibiotics finally took care of the problem. One time it looked like I had a tennis ball stuck over there.

Posts: 210
Joined: Jul 2013


I think you'll find that most of us have had different roads to Dx.  There are so many different types of NHL and each type impacts each person differently.  For me, the doctors feels that I first started with cancer in February of 2013.  By mid May 2013, my symptoms were shortness of breath, rapid heart beat, and dizziness.  I really had felt any other symptoms before that and didn't realize I had any swollen lymph nodes.  By the first R-CHOP in early June, I had trouble getting off the couch to get a drink of water.  I'm in my late 40s and was in pretty decent shape.  

Blood work will only tell part of the story.  The only real way to know if it's any form of cancer is through a biopsy.  I recommend you keep pushing your doctors...especially if that inner voice is telling you something.

Keep us posted.


jimwins's picture
Posts: 2111
Joined: Aug 2011

Hi aquasab and welcome to the site.  You'll find caring and understanding folks here and realize you are not alone.  As Karl mentioned, the road to diagnosis is somewhat individural depending on the type of lymphoma and where it shows up.  I was diagnosed with Diffuse Large B Cell Lymphoma that showed up in the area between my small intestines and stomach.   My main symptoms initially were fatigue (I fell asleep often) and some GI problems.  I initially went to a GI specialist, had a colonoscopy and received and "all clear" and was diagnosed with inflammation and treated accordingly.  A short time later I was getting ready for work one morning and after going to the bathroom, I was dizzy upon standing and nearly fainted.  Long story short, I was taken to the emergency room and was admitted to intensive care.  I was bleeding internally and was given 19 units of blood during that time.  Through scans, they determined the source of bleeding and performed a procedure to correct that.  They noticed a small mass and performed a biopsy.  I got the diagnosis of lymphoma a couple weeks later and the cancer journey began.  I started chemotherapy (R-EPOCH) which was interrupted by a surgery to remove a short section of my small intestine.  I completed chemo and am now over 2 years in remission!  I was very fortunate - they said I was a model patient in my response to treatment.

We very well understand your fear right now and it is very normal.  I pray it is not cancer but please know lymphoma is very treatable and even curable in some cases. I have less than 3 years to the "cure" mark and I plan to get there :).   It's very hard not to be anxious and worry right now.  There are good medications for anxiety and you might ask your doctors about that.  It helped me a lot.  

Please know we are here for you and keep us updated, okay?

Sending big hugs and postive thoughts your way, 


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