Looking for answers

Hello, 

Let me start by saying I have not been diagnosed with any form of cancer at this time. I have very high concerns though that I feel are being brushed off by the last two general practioners I have seen about my concerns. Here's a little about me. I apologize in advance for my lack of brevity.

Four years ago I was diagnosed with Celiac disease and several food allergies. I went off everything they said I should not eat and I started feeling amazing. I went on with my life for three years feeling better than I ever had in my whole life. Then about 9 months ago I came down with an absolutely debiltating flu. I spent weeks in bed with swollen nodes showing in my thigh, neck, below my collar bone, under my arms and around my elbow. After about 2 months most of the lymph nodes went back to either not being felt at all or considerably less swollen. A small sort of figure eight feeling squishy lump remained in my neck, along with a lump about two fingers below my collar bone that is about the size of a walnut and fixed hard to my chest bone, there is also a small hard pea sized lump right below my jaw near my ear all localized to the right side of my body. I began experiencing difficulty breathing when I lay on my right side or on my back, when I bend over to pick something up and when I turn my head in that direction. I waited another four months to see the doctor. I figured with my history of inflammation and the fact that I had just had a terrible flu meant that these lymph nodes were simply inflammed. 

I started experiencing night sweats, interrupted sleep, uncontrollable itching in my legs every night. I'm barely able to get about 4 hours of sleep a night. I can't seem to eat without feeling like I've swallowed a watermelon no matter what it is or how little I eat. I've lost 43 lbs since my last doctor's visit which was about 1 year before this last vist with no change to my already limited diet and no additonal exercise. 

When I made an appointment with my doctor to express concern about the lump in my chest and neck and the difficult breathing, he zeroed in immediately on my asthma. He poked at the lump in question for a whopping two seconds and then ordered me a chest x-ray and blood work along with a new time released inhaler. Even after I contested that I am already on a daily inhaled steroid for my asthma. The x-ray did not appear to have any pooling of fluid around my lungs. 

I went and got all the blood work done. I haven't heard a word back from him at all. I am no doctor but I googled a few of my results and they are starting to worry me. If this is something besides my normal inflammation or residual swelling from a flu I feel like there should be a bit more expediecny. 

ComponentStandard RangeYour Value
NEUTROPHILS %, AUTOMATED COUNT 42.0 - 75.0 % 58.0
LYMPHOCYTES %, AUTOMATED COUNT 20.0 - 51.0 % 33.7
MONOS %, AUTO 1.0 - 12.0 % 6.4
EOSINOPHILS %, AUTOMATED COUNT 0.0 - 10.0 % 1.4
BASOPHILS %, AUTOMATED COUNT 0.0 - 1.0 % 0.5
RBC NUCLEATED AUTO COUNT, BLD <=0.0 % 0.1
NEUTROPHILS, ABSOLUTE, AUTOMATED COUNT 1.8 - 7.7 x1000/mcL 4.3
LYMPHOCYTES, AUTOMATED COUNT 1.2 - 3.4 x1000/mcL 2.5
MONOCYTES, AUTOMATED COUNT 0.1 - 1.0 x1000/mcL 0.5
EOSINOPHILS, AUTOMATED COUNT 0.0 - 0.7 x1000/mcL 0.1
BASOPHILS, AUTOMATED COUNT 0.0 - 0.2 x1000/mcL 0.0

 

ComponentStandard RangeYour Value
WBC'S AUTO 4.0 - 11.0 x1000/mcL 7.5
RBC, AUTO 4.20 - 5.40 Mill/mcL 4.60
HGB 12.0 - 16.0 g/dL 14.6
HCT, AUTO 37.0 - 47.0 % 43.0
MCV 81.0 - 99.0 fL 93.4
MCH 27.0 - 35.0 pg/cell 31.7
MCHC 32.0 - 37.0 g/dL 33.9
RDW, BLOOD 11.5 - 14.5 % 12.3
PLATELETS, AUTOMATED COUNT 130 - 400 x1000/mcL 222

Everything I read seems to say that the presence of RBC Nucleated Blood Cells are a sign of trouble. What should I do? Should I wait to hear from him? Should I call? Should I seek a second opinion since he's ignoring my major complaint? Thank you in advance for any responses. 

Comments

  • See a specialist

    my layman's take on your blood work says its nothing to worry about. However the itching and weight loss (more than 10% of body weight) are classic signs of lymphoma. To ease your mind perhaps a visit with an oncologist is the best course of action. Good luck.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    unknown said:

    See a specialist

    my layman's take on your blood work says its nothing to worry about. However the itching and weight loss (more than 10% of body weight) are classic signs of lymphoma. To ease your mind perhaps a visit with an oncologist is the best course of action. Good luck.

    Thoughts

    Amy,

    Except for the Nucleated RBC, all of your lab values are dead-center perfect.  I did a little reading on what "Nucleated RBC" values most commonly represent, and it seems they are usually representative of aphyxia (low oxygen) or forms of anemia.

    Like GKH, I would suggest seeing an oncologist.  Even if your symptoms are not a form of cancer, they are marked and effecting your quality of life.  Night sweats (caused by histimine abnormalities in the blood) and the weight loss should always have their cause determined.  Your lack of sleep is atypical, since fatigue and excessive sleep are more common in lymphoma than insomnia, but these things get scrambled from individual to individual.

    After a CT showed me with massively involved, Stage III lymphoma, my blood labs all came back perfect -- no abnormalities.  Except for LDH and WBC, most of my blood vaules remained in normal range throughout six months of chemotherapy.  And, I never had a node felt by touch exam anywhere. Neither I nor my doctors ever felt an enlarged node on or in me at any time, before, during, or after treatment. Yet I had huge nodes across my chest cavity and moderately large nodes from my neck into my pelvic region.

    So, bloodwork and touch exams (in my limited, untrained, layman's opinion) are of limited value in some cases.

    max

    .

  • Dianna2013
    Dianna2013 Member Posts: 15
    Looking for answers

    If you have a lump on your throat you should see another doctor. I thought I was in perfect health other than being a quadriplegic. I went in for simple wax remval from my ear. The doctor felt a lump on my throat and ordered an ultra-sound the same day! Diagnosed with Mantle Cell Lymphoma Aug of 2013. After she told me that, I had to feel around to find it. In about a month it was very visable.

    Dianna

  • Thoughts

    Amy,

    Except for the Nucleated RBC, all of your lab values are dead-center perfect.  I did a little reading on what "Nucleated RBC" values most commonly represent, and it seems they are usually representative of aphyxia (low oxygen) or forms of anemia.

    Like GKH, I would suggest seeing an oncologist.  Even if your symptoms are not a form of cancer, they are marked and effecting your quality of life.  Night sweats (caused by histimine abnormalities in the blood) and the weight loss should always have their cause determined.  Your lack of sleep is atypical, since fatigue and excessive sleep are more common in lymphoma than insomnia, but these things get scrambled from individual to individual.

    After a CT showed me with massively involved, Stage III lymphoma, my blood labs all came back perfect -- no abnormalities.  Except for LDH and WBC, most of my blood vaules remained in normal range throughout six months of chemotherapy.  And, I never had a node felt by touch exam anywhere. Neither I nor my doctors ever felt an enlarged node on or in me at any time, before, during, or after treatment. Yet I had huge nodes across my chest cavity and moderately large nodes from my neck into my pelvic region.

    So, bloodwork and touch exams (in my limited, untrained, layman's opinion) are of limited value in some cases.

    max

    .

    Accuracy

    i have a relative who ran a bloodbank for the VA. She told me that the automated blood analyzers used by most labs do a poor job on nucleated RBC counts, especially when the numbers are low. She says she would recommend a manual nucleated RBC count be taken as it can be a serious marker. She has seen false alarms with very low levels before. However , even a low level should be double checked manually by a skilled technician.

  • JoaniePP
    JoaniePP Member Posts: 10
    For peace of mind I would see

    For peace of mind I would see an oncologist.  Night sweats were my only real symptom .  I have been in remission for 6 years.  Good luck to you.

  • amybear34
    amybear34 Member Posts: 2

    Thoughts

    Amy,

    Except for the Nucleated RBC, all of your lab values are dead-center perfect.  I did a little reading on what "Nucleated RBC" values most commonly represent, and it seems they are usually representative of aphyxia (low oxygen) or forms of anemia.

    Like GKH, I would suggest seeing an oncologist.  Even if your symptoms are not a form of cancer, they are marked and effecting your quality of life.  Night sweats (caused by histimine abnormalities in the blood) and the weight loss should always have their cause determined.  Your lack of sleep is atypical, since fatigue and excessive sleep are more common in lymphoma than insomnia, but these things get scrambled from individual to individual.

    After a CT showed me with massively involved, Stage III lymphoma, my blood labs all came back perfect -- no abnormalities.  Except for LDH and WBC, most of my blood vaules remained in normal range throughout six months of chemotherapy.  And, I never had a node felt by touch exam anywhere. Neither I nor my doctors ever felt an enlarged node on or in me at any time, before, during, or after treatment. Yet I had huge nodes across my chest cavity and moderately large nodes from my neck into my pelvic region.

    So, bloodwork and touch exams (in my limited, untrained, layman's opinion) are of limited value in some cases.

    max

    .

    Thank you for the feedback.

    Thank you for the feedback. It's been a few weeks since my visit to the doctor. I've been using the inhaler he prescribed and have found no relief to the nagging cough and heavy chest feeling. The lumps have not gone down at all and the one in my neck is constantly pulsing and it feels swollen all the way down my neck into my collar bone area. I'm exhausted and fall asleep everywhere, I just can't stay asleep because I'm itchy and wake up soaked in sweat. My vitamin d2 levels were very low and he prescribed a time release capsule I am to take once a week. I took the first dose this Monday. He would like a repeat of all my blood work in a month. Should I just wait until then to tell him the lumps have not gone away or should I seek an oncologist on my own?