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Undiagnosed, scared mom.

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

Hello. I'm here to get some advice. The night of the 25th of April prior to going to bed I noticed swollen lymph nodes in my groin. I reached out to my doctor and she felt them and thought because I have HSV1 and get outbreaks on my back that I was possibly going to have an outbrewk and started me on the medication. It did nothing for my lymph nodes swelling so I followed up a week later and saw a nurse practitioner in the clinic who sent me over for an ultrasound. The ultrasound came back as:

 

There are 2 palpable lymph nodes in the right groin measuring 0.4 x 2.3 x 1.1cm and 0.4 x 2.1 x 1.3cm. There are other smaller nodes identified in the right groin. The nodes maintain normal central fatty hila and the cortex is not grossly thickened. There is no abnormal fluid collection or hernia. 

 

impression-

 

Ultrasound findings suggest reactive non pathologically enlarged inguial lymph nodes. The nodes should be monitored on physical exam. If a progress, recommend repeat ultrasound or biopsy. 

 

This ulrasound was done on May 1st. My lymph nodes are still swollen. I think they gone down a tiny bit but they are still hanging out. I have lost my appetite completely and have lost 15lbs in the last 3 months. It's hard to say if it's from stress as I had a complete breakdown in February or if something is wrong with because of the lymph nodes. i had an appointment with a general surgeon and he is sending me to have a needle biopsy for peace of mind. This is scheduled for the 22nd.

Im reaching out on here for support through this testing and advice on how to push my doctors to help. I have been to the ER with stomach pains that were horrible. They did an ultrasound on my pancreas, liver, gallblader and right kidney and could only send me home with the diagnosis of gastritis. I don't have night sweats but I do have fatigue, stomach pain and no appetite. I'm a mom to 7 year old twins and a 5 year old and barely hanging on emotionally. Nobody has answers as why I'm not hungry. My CBC came back ok with only my RDW elevated. I have to force myself to eat and have become severely anxious and depressed over this. I feel stuck. What can I do next? 

What can I ask my doctor to do for my no appetite? Please help. 

po18guy
Posts: 994
Joined: Nov 2011

"...suggest reactive non pathologically enlarged inguinal lymph nodes" - This points 180 degrees away from malignancy. Since you have a known viral infection and an outbreak was either in progress or suspected, enlarged lymph nodes are a healthy sign. They mean that your immune system is functioning. If it was not functioning, or impaired, you could expire from common infection in as little as two weeks! No cancer can claim your life in anywhere near that short of a time. Far better to have a fully functioning immune system with enlarged "reactive" nodes - a sign that it is doing what it is designed to do.

I suspect that most of the symptoms you have experienced since hearing the word "cancer" may be stress related. You are on alert and noticing each and every new symptom. Sometimes, coincidence is simply coincidence. Your doctors are on the case. Trust them and be as patient as possible as you undergo the diagnostic procedure. Remember that mothers of young children are particularly susceptible to worry, stress and anxiety. This is normal, but it can easily spin out of control.

Antianxiety meds can help. So can Marinol, a synthetic THC that is a proven appetite stimulant.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3294
Joined: May 2012

Twins,

Welcome.  As the radiologist interpreted your two somewhat enlarged nodes as non-pathological, and because all other scanning has been negative for enlarged nodes, added to the normal CBC, I'll share that Lymphoma in your case sounds very unlikely in my layman's opinion.  It is impossible for a touch exam to accurately determine slight changes in size , so the fact that they "seem smaller" is mostly a subjective guess on your part.   The doctor is being generous in doing the needle biopsy, but hopefully it will provide some much-needed peace of mind.

Lymphoma in advanced cases can cause weight loss, but you definitely are not in a situation of advanced lymphoma, so the cause must lie elsewhere. Since most of your GI tract has been scanned negative, the cause may relate somehow to your emotional turmoil.  From the test results you shared, Lymphoma is definitely not the cause of your stomach pain.

I hope the biopsy proves negative and allows you to focus on emotional wellness.

max

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

Thanks for taking time to reply. I just had a 3 day stay in the hospital for pneumomediastinum. They could not find where the air came from. I had every test under the sun, from CT's from the waist down, to CT's from the chest up, barium swallow test, HIV test, fecal leukocyte test, it was all done. All came back negative but I have air in my neck, chest and upper back. It's slowly reabsorbing. My labs are now abnormal... I asked if they were concerned with the lymph nodes and told them that I had a fine needle biopsy scheduled Monday. They didn't seem concerned even with my labs showing some abnormalities. What are some markers? I do have a cold now and coughing up mucus (tmi) sorry. 

 

My CBC shows-

 

WBC- 13(H)               Ref range 4.0-10.0

RBC- 4.32                            3.85-5.20

Hemoglobin- 11.9                    11.5-16.0

Hematocrit- 35.1                     34.7-46.0

MCV- 81.3                               80.0-97

MCH- 27.5                              26.0- 34.0

MCHC- 33.9                            32.0-36

RDW- 15.2 (H)                        11.5-15

Platlet- 272                            140-440

MPV- 10.3                             6.5- 12.4

Auto Abs Neut- 10.50 (H)      1.5-8.0

Auto Abs Lymph- 1.53           0.8-4.00

Auto Abs Mono- .89              0.0-1.20

Auto Abs Eos- .04                0.0-.30

Auto Abs Baso- .03              0.0-.30

Auto Abs Imm gran- .04(H)  0.0-.03

Auto Abs NRBC- 0.00.          0.00-0.01

Auto % Neut- 80.7 (H)       37-80.0

Auto % Lymph- 11.7 (L)    16.0-51.0

Auto % Mono- 6.8              0.0-12.0

Auto % EOS-  0.3              0.0-8.0

Auto % Baso- 0.2              0.0-3.0

Auto % Imm Gran- .3         0.0-0.5

Auto % NRBC- 0.0             0.0-0.2

 

I know that I'm an anxious mess with these lymph nodes popping up but I really do have a lot to fight for. Could those neutrophils and lymphs be up from a cold? I saw a general surgeon and he's the one who referred me to have an ultrasound guided needle biopsy for peace of mind. Are these accurate? The hospital said my organs looked good on the CT's. Would those even show anything to be of concern if I had lymphoma? I was scheduled for a colonoscopy/endoscopy on Thursday but had to cancel since I was hospitalized. My mammogram checked out good too. Should I just leave this alone and trust that I am okay? I appreciate you taking your time to help me.

 

-Christina

 

 

 

 

 

 

po18guy
Posts: 994
Joined: Nov 2011

The numbers mean very little to essentially nothing. They are a snapshot of a single point in time. They were dfferent a minute before the sample and were different a minute after. Doctor watches for signs that are truly off the chart, and for the trend in your bloodwork. Even if you had some form of lymphoma in your body, blood would not tell you about it until it was totally obvious. You clearly have infection going and that explains your node. If I were you, I would immediatley stop thinking cancer. No reason to think cancer. It seems clear that they are doing the needle biopsy to calm you down. That's why I am thinking that anxiety meds might be worth trying. You have good doctors on your case and they are doing all the right things.  

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

I'm on an anti depressant called mirtazapine, gabapentin (off label for anxiety) and Valium. I'm doing my best to cope and really didn't want to jump to "cancer". I've never experienced these symptoms that I'm having so it's worrisome. But thank you again for answering. 

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

I had a core and fine needle biopsy done Monday, and it came back insignificant because they didn't get enough tissue to test. I was also hospitalized for spontaneous Pneumomediastinu for 3 days. They have no idea how I got it, but also noti another swollen lymph node in my neck. It's quite large and I can feel it pushing against my throat. 

I have a repeat biopsy next Wednesday on the groin lymph nodes, a colonoscop/endoscopy tomorrow and I meet with a hematologist/oncologist on the 5th. The doctor who did my biopsy said the nodes still looked benign on ultrasound but also stated nothing is 100% without pathology. I didn't feel the one in my neck until the air reabsorbed the Pneumomediastinu. My labs have been all over the place but the recent one showed elevated Auto Abs Eos at .35 when 4 days prior it was at .04. My RDW's are still hanging out at 15.5.... I don't want to doom and gloom myself but things aren't looking promising. I've felt sick since Febuary....did you start feeling a certain way prior to diagnosi? 

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

My primary also noted the large node in the neck and said if it doesn't change in a week or two to come back for an ultrasound Referral.

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Hey twinmom,

I know having children makes this all more frightening. My children are grown and it does ease the anxiety.

You asked about the symptoms I thought I would tell you what mine were. 

About 6 months before diagnosis I had some shortness of breath whenever I climbed stairs or steep inclines. I also felt I had less stamina when working. Then about a month before diagnosis I lost my appetite and lost about 30-40 lbs. Did not really mind the weight loss and attributed at first to stress but when the stress seemed gone I was still losing weight. I noticed a large growth the size of a baseball under 1 armpit that was only visible when holding arm straight up in the air. I was having night sweats some. Went to Dr for a physical knowing there was somthing going on. Blood counts showed low white blood cells, low red blood cells, low platelet count. The next day he had me at oncologist. The oncologist ordered a CT scan with contrast which showed a lot of swelling in Lymph nodes and enlarged spleen. Then on to a PET scan which showed all the places there was cancer. Next a needle biopsy and a lymph node biopsy. 

Keep going until you get a diagnosis. Many of these things are not as easy to find the cause of as people think. Just keep pushing for yourself until you get answers. Keep asking around for Oncologist and Dr's people you know use. All Dr's are not the same and finding the right one makes all the difference. Even after my diagnosis I went to 2 more Dr.'s. I did not go because I doubted the pathology report. I just knew that the course of treatment was as important as the diagnosis and wanted to make sure I had all the options. Ended up using the original oncologist.

Not sure my list of symptoms has helped at all since everyone does not have the same. I can say that of the 11 or more symptoms of Lymphoma I was having about 8 so before even the CT I was pretty sure. There are so many types though I still had to have all the test to have a specific diagnosis.

Hoping you get your answers soon. The waiting and uncertainty is really the hardest for me.

Sandy Ray

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Hey twinmom,

I know having children makes this all more frightening. My children are grown and it does ease the anxiety.

You asked about the symptoms I thought I would tell you what mine were. 

About 6 months before diagnosis I had some shortness of breath whenever I climbed stairs or steep inclines. I also felt I had less stamina when working. Then about a month before diagnosis I lost my appetite and lost about 30-40 lbs. Did not really mind the weight loss and attributed at first to stress but when the stress seemed gone I was still losing weight. I noticed a large growth the size of a baseball under 1 armpit that was only visible when holding arm straight up in the air. I was having night sweats some. Went to Dr for a physical knowing there was somthing going on. Blood counts showed low white blood cells, low red blood cells, low platelet count. The next day he had me at oncologist. The oncologist ordered a CT scan with contrast which showed a lot of swelling in Lymph nodes and enlarged spleen. Then on to a PET scan which showed all the places there was cancer. Next a needle biopsy and a lymph node biopsy. 

Keep going until you get a diagnosis. Many of these things are not as easy to find the cause of as people think. Just keep pushing for yourself until you get answers. Keep asking around for Oncologist and Dr's people you know use. All Dr's are not the same and finding the right one makes all the difference. Even after my diagnosis I went to 2 more Dr.'s. I did not go because I doubted the pathology report. I just knew that the course of treatment was as important as the diagnosis and wanted to make sure I had all the options. Ended up using the original oncologist.

Not sure my list of symptoms has helped at all since everyone does not have the same. I can say that of the 11 or more symptoms of Lymphoma I was having about 8 so before even the CT I was pretty sure. There are so many types though I still had to have all the test to have a specific diagnosis.

Hoping you get your answers soon. The waiting and uncertainty is really the hardest for me.

Sandy Ray

Twinmomplus1's picture
Twinmomplus1
Posts: 12
Joined: May 2017

Thank you for replying Sandy... I only had a couple nights where I woke up sort of sweaty but not drenched. This started back in February. I got cosmetic Botox in my forehead for my birthday, the next day I felt like I couldn't get a deep breath, and then I felt nauseous. After a week, I couldn't sleep at night. I would fall asleep and jolt back awake. I was awake for 5 days straight and went to doctor after doctor for help. They told me I was having anxiety and tried sleep meds but they didn't work. I reached out to a psychologist and she got me in with her psychiatris. They put me on meds and I do CBT weekly. 

 

The beginning of March or end of February (can't remember) I had horrible diarrhea for 4 days straight. I chalked it up to a stomach bug since my kids and husband had it a couple weeks before.

 

In mid March I started a 30 day detox (no sugar, soy, dairy, gluten, alcohol or caffeine). A week into it, I started to get really bad gas, and then constipation. I finished the cleanse and then went an over nighter with my husband where I finally ate a normal meal. I was hungry the whole time and was eating like crazy but kept having horrible gas. When we got back home I noticed my lymph nodes were swollen on the right side of my groin (April 25th) so I called my doctor, she said to watch and wait. I waited a week and my appetite started diminishing daily. I had told her that I had lost 13lbs over 3 months and was having irregular periods. She said it more than likely from the stress and anxiety. I requested an ultrasound on the lymphnodes and they came back as reactive non pathillogically enlarged Nodes. 

I'be been to the ER with stomach pain where they did an ultrasound on my pancreas, liver, gallbladder and right kidney. They said everything was fine and that I had gastritis. I went home sick... Went back to the ER twice last week.. I had burning pain where the lymph nodes are in the groin, he did an ultrasound and saw that I had a 2.5cm cyst on my right ovary and said that happens a lot to women and nothing to worry about. He did a CT of my abdomen, he said it was okay, he noted the cyst and nodes but sent me on my way. The next day my neck swelled to the size of my face, saw my primary and she said it was allergies and to try Flonase. My husband wasn't buying it, he took me straight to the ER, I was admitted they night with Pneumomediastinu... 

 

Sorry for rambling..... I'm a mess as I know something isn't right in my body. I went from 147lbs to 129 at 5'5''. I was extremely active before this started, running or Zumba 5 times a week.... I now no longer have the energy to work out. I'm barely hanging on with having to help my sweet babies get ready daily. I keep pushing and had to make my own appointments to get help. My doctor has been horrible at getting on top of this. My OBGYN is the one who referred me to a general surgeon and gasteronlogist. I just want to be okay. 

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