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Newbie but not new to cancer.....

lsugirl
Posts: 10
Joined: Jul 2011

Hi everyone, 

Please forgive me if this topic has been discussed previously....I hope I can get something to help my over active mind. Ha!

I tested positive for mono yesterday after I "encouraged" my GP to do the blood test given that I felt like a truck has hit me even though I've not had the flu. I was in bed Sun-Tues, had a sore throat which turned into the crud so I went to see her to rule out bronchitis. she said I had a tonsil stone on my tonsil which explains why I've felt like I've had a piece of popcorn stuck in the back of my throat that just wouldnt go down I told her. She just poo-poo'd that comment saying if it doesn't go away she would send me to an ENT. Huh? Got a z-pack and then got the call last night I tested again for mono. This is my 3rd time....2nd time in two years. My first time was when I was in 7th grade and I had full blown mono....2 weeks of high fever, lathargic and my right gland (same side this stone is on) swelled up like I swallowed an egg sideways. I missed a month of school and was told I'd never get mono again. 

She ordered the EBV IGM (sp) test to confirm my mono test yesterday...what really will this test show? Has anyone had this done to rule out mono or confirm it or even more, lymphoma? I'm not worried about anything, I just liked to be armed and prepared for what might come my way you know?? I had a D&C a week ago to rule out endo cancer (history of endometrosis since 14) so I'm wondering now at 44 am I going to be dealing with something else, maybe not cancer but a crazy virus?? 

Ok, I'm rambling....sorry. Any help, direction, advice is very much appreciated. Thank you and God bless!

Kim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

Isugirl,

When the doc ran the mono tests, did she also run a CBC ? I would demand one. The CBC can indicate whether it is indeed simply mono or if other issues are possibly going on. I would not let the "tonsile stone" issue ride too long either. I'm sure you know that the tonsiles are part of the lymphatic system.

Some data suggests a link between Epstein Barr Virus and a few rare forms of  subsequent lymphoma, but it is a relatively weak link and most oncs do not regard it as a huge red flag in medical history.

As you wrote in your bio, it is critical to drive your own care.  It it does not clear within a few weeks I think I would go to an infectious diseases guy, or some other specialist.

There are several regular contributors here who have had mastectomies followed by later, differing cancers, and they might chime in with their particulars, if they see any parallels in what you have described above and in your bio.

I hope everything clears up rapidly for you,

max

 

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lsugirl
Posts: 10
Joined: Jul 2011

Hi Max,

Thanks for your response....I was wondering the same about my blood counts. I even asked the lab guy today if she ordered a CBC test and NOPE! Ironically I had my blood drawn on 12/14 for a full CBC and hormone level tests by my gyno to see if my "night sweats" and irregular periods were indications of peri-menopause...instead he says my tests were good but let's do a d&c so I have my test results. What numbers/tests should I look for? 

Thanks again!! Always glad to find supportive peeps who understand what or at least has empathy for what we experience. I feel that my hubby just thinks I'm being lazy...which is so not me!! Before I got sick I worked out twice a week with a trainer at 5:30 am so it's not that I'm lazy, hormonal or depression....I'm sick!!! 

Sorry for the frustration....appreciate your assistance. I just don't understand about the EBV test to "prove" my mono test was not a false positive?! i guess given this is my 3rd time she is checking for explanations? Keep you posted!

kim

GKH
Posts: 292
Joined: Jul 2012

I can't over emphasize that we all need to drive our own care. I am a cancer patient, not a cancer MD but I have learned a lot. I was misdiagnosed with gout, RA, fibromyalgia and several other illnesses before they finally got it right - Stage IV lymphoma. The final diagnosis came only after I insisted on a very difficult biopsy. I was sick but no symptoms other than me saying "hey I feel bad". A big issue for me was "normal" blood work. I had slightly low red and white counts just barely outside normal so my swollen lymph nodes were poo poo'ed by several GP and a chorus of specialists. Go get a CBC and take it from there. Maybe insist on a CT if bloodwork is suspicious. See an onc.

po18guy
Posts: 237
Joined: Nov 2011

My first advice to those with no diagnosis is not to ask for a cancer that you do not have. That being said, I began with a single enlarged node. What developed was fatigue, night sweats, weight loss, high fevers. New-to-me doctor gave antibiotics and blood tests. Got worse. Felt like mono again (had it in '73). Asked about mono and was told that I had it before. Uh, could have told doctor that, but wasn't asked. More tests and waiting while nodes began popping out of my neck. Yes, I had mono (again). This toid "me" that my immune system had failed. This silly notion apparently never occurred to the certified medical doctor. Mentioned family history of cancer (60% of dad's side succumbed to it). Doc gave me anti-anxiety meds. I am not kidding. I stilll have them. Never went back. Wife went to bat for me. Bottom line: rare, aggressive cancer and lots of it.

Funny things, immune systems. Wife's appendix went bad decades ago and came out. She had tonsil stones for years, and the tonsils came out, but never any cancer. Watch for the usual: spiking fevers, sudden and substantial weight loss, drenching night sweats and palpable nodes. Lymphoma bloodwork is often completely normal. It is a huge leap from non-specific symptoms all the way to cancer. Look for chronic infection, endocrine problems and auto-imune disorders first.   

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

Isugirl,

Like a lot of others who write here, my CBC results were never radically out of normal range, except for a few markers. This was despite the fact that I had an extensive amount of widespread cancer. Sedementation Rate was one that was out of wack, and LDH was the other

Note: I did not say "HDL," I said "LDH," which is something completely different, and UNRELATED to cholesterol.   LDH values very accurately paralleled my progress toward remission, but I do not know if it is common for it to be so accuarate a sign.  That is, some people may (I suspect, I do not know this)  have significant cancer and normal LDH, so it is just one result among dozens that must be looked at.

LDH is an indicator of tissue damage or cell death, and is most commonly focused on in trauma patients and some liver diseases, but it can also shoot up with cancer. Interestingly, my WBC counts were never abnormal, although I was taking a common WBC booster after my first infusion (neulasta).

I would look at the Sed and the LDH, therefore. The lab will normally bold or highlight line items that are out of normal ranges. If these are way off, I would demand to know why.  Also, always be sure to get a full copy of the results, and file them somewhere for future reference.

max

fullyloved
Posts: 38
Joined: Oct 2012

I am amazed at how many people state that the doctors looked at everything else first and they went the round of specialists before being diagnosed with their true ailment: lymphoma. That happened to me and I thought maybe that was because I was young, and the doctor incompetent. But I realize now that that is probably not the case. Seems like the symptons for lymphoma can mimick so many other diseases.

And like you, Max, my CBC's were totally normal, which is why the doc and I didn't get too concerned at first. Surely, if there was something seriously wrong, it would show up there. I have since learned differently. The one odd thing was my LDH level. Absolutely through the roof! I have since learned that that can be a marker for cancer. If only I had known it then, I would have caught it months sooner.

My onc doc insists that I can't possibly be feeling better now than I've felt for years, but I know differently. I firmly believe that I had lymphoma coming on for quite awhile. I can finally explain alll kinds of odd things that I thought were just normal, and now have found out they weren't, just early symptoms of lymphoma.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

A doctor at a Quicky-Clinic told me recently, after I asked him about diagnosing cancer: "An internal med practice sees such a constant stream of routine, minor problems that they do not automatically, or even easily, think 'deadly disease' with most patients."

A friend just spent 17 days in the biggest regional hospital in my area, which is also a University Teaching hospital. His daughter asked the Hospitaler how his Stage 4, terminal prostate cancer was coming, and the doctor replied "We did not know that he had cancer. It is no where on his charts."

Also, Medical Mistakes is one of the leading causes of death in the US. This is firmly established and documented.

max

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

I agree about lymphoma not showing up for sometime.  My mom was hospitalized in August with back pain dehydration and very high calcium level.  After treating the calcium my mom started to feel better. The doctors felt it wasn't anything to be concerned. The doctors figured the cause was dehydration and calcium supplements.  Bloodwork was normal for 2 months. looking back high calcium is a marker for cancer. 

 

Emily

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