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Avatar universal

Lymphoma, Any words of advice

Well, Here I am 4 - 5 weeks after the discovery of a large, painless lump in my collarbone.  Immediately I got up from my magazine read and looked in the mirror to find a huge visible mass where there used to be a dip in my collarbone. I got to researching it and diagnosed myself with a swollen lymph node...which could be the sign of lots of things, or nothing at all according to google, search engines, etc.  I called my doctor and they didn't seem to panic... only alerting me that sometimes they swell, wait a few days and see if it goes down.  Me knowing my body knew that this wasn't the norm.  I did have a ctscan scheduled to check some pain in the joints I'd been experiencing (feeling like I was falling apart)  After the radiologist finished I pulled my collar of my shirt down and said, "LOOK AT THIS."  The widening of her eyes and drawback of her body gave me instant gratification that this was not normal.  I waltzed over to my doc office that's next door and visited the window and asked the receptionist, "Should I wait another week for this too be seen?"   (It seems that was the only appt. available.)    So, it's not that important I guess.

Finally after 2 weeks of waiting to see my family doctor for this lump that hadn't changed... My doctor says, "Yes, we do need to get that looked at and see what it is."  Another few ct scans of the head and chest finds several swollen lymph nodes from my neck down into my mediastinum.  According to the reading... "suggest lymphoma"  Also, the largest lymph mass measuring 8 by 5 by something.  So I cry a few hours, and drive around a few hours going now where.  I'd picked up my reading before the family doctor had received it.  I have to call medical records to have it practically pushed into my doc's lap because they hadn't received it at the office yet.  A few hours later she calls me and tells me she wants to send me to a specialist asap, not to panic from the word lymphoma...this could have lots of other causes....(Right, like none of the other causes troubles me...HIV, Hepatitis, other types of cancers, the list went on.)

So the days drag on...a few days later I see my cancer doc.  I knew this appointment was just going to be the beginning of more and more appts...and it was.  I was scheduled for a CT scan, and MRI of the brain, a removal and biopsy of one of my lymph nodes, and a bone marrow biopsy all within a week, and another week and a few days to wait to see the "Cancer doc" once more to see.... WHAT IT IS?  So I'm left here with these words from my doc.  "It walks like a duck, quacks like a duck, but is it a duck?"  The duck meaning, "lymphoma".  So, I'm a sitting duck at the moment...waiting......for the appointment to find out..." Hey doc, is it a duck?"  "Is it a flock?"  Do I plan my last family vacation or what?

So in case your all wondering...  Other symptoms.  I had hives one night after discovering the lump, a week later I had hives again.  I've suffered from severe to moderate itching for a while.  I've blindly been fighting fatigue for quite some time.  It seemed nothing could give me energy.  My eyes seemed really dry in the evenings, for a while I've been waking up with a really dry mouth "like I'm dehydrated"  When I would do my usual work that requires some physical activity I'd become short of breath with just a few stairs to climb....I used to run up and down those stairs no problem.  I thought that the chills were just from the extreme cold of this winter...but they were chills.  I never monitored my temperature...until the past few days.  At the hospital the other day when leaving from bone marrow biopsy the nurse took my temp, left the room, took my temp again, left the room (never said anything), I took a drink of my seagrams on ice, and he came back with an oral thermometer...and an explanation that I had a temp twice so he wanted to check orally....I told him well...I just took a cold drink. The temp read normal and he wheeled me out.  I've noticed the past few nights that i've had a temp of 99.1 - 100.1... but usually it's 99.7.  I've also had some super dooper headaches the past few days...I feel like I'm gonna blank out.

Cool story right.  

Oh yeah....and I think I can feel like every lymph node in my body....Top of thigh, around knee, forearms, upper arms, under arms, back of neck, neck, chest, hips, ... And my calf muscles have been hurting, joints have been feeling fragile.  Health...I miss you!
2 Responses
Avatar universal
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907672 tn?1381025723
Hello.  Sorry it took so long for someone to respond to your post.  Your story sounds very familiar as I was diagnosed with Lymphoma 4 years ago.  Have you got the final diagnosis yet?  Typically, a biopsy (or several biopsies depending on how many lumps they find) are done first and sent to a pathology lab.  The lab analyzes the samples and determines what specific type of lymphoma you have (there are many sub types) and how aggressive it is behaving.  Mine took weeks to get results as they had to send my biopsy samples out of town to a bigger lab.  Then, once a lymphoma diagnosis is made, the doctors usually proceed with all the CT/PET scans and bone marrow biopsies to figure out what stage of Lymphoma you have (where it's at in the body).  It surprises me that they are doing all these staging type of tests before they gave you an official diagnosis.

It is imperative that they get the diagnosis correct as treatments are tailored to the specific sub type of lymphoma.  If I were you, I would probably seek a second opinion at a larger, cancer research hospital.  Your doctor can send the pathology samples to them so that a second pathology can be ran.  This will help verify the diagnosis and give you a little more peace of mind knowing that the diagnosis is correct.  

Your other symptoms of rash, itching, fever, fatigue and body aches sound very common for lymphoma, but of course these symptoms can resemble other diseases as well.  The only way to diagnose Lymphoma is via pathology from a biopsy.

Keep your chin up and please know that a Lymphoma diagnosis doesn't automatically mean that you need to plan your last family vacation.  They have some amazing treatments in the works and people can often live long productive lives after being diagnosed.  Please keep us posted on your health.
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