abnormal lymph node with new mass - no help

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

To make a LONG story short, I have an odd groin lymph node that is considered normal in size (2cm), but is hard, "glued tight" to surrounding tissues and painless. It has (now) been there for 7 years.

Six months ago, I first noticed what seemed to be a growth coming off the node. It goes across the crease and ends in a roughly 2.5in x 1-1.5in lump in my upper leg. Noticing it was still there, I recently went to 2 doctors because of this "new growth". My primary care doctor made fun of me for worrying about it and the oncologist got mad. I've now heard (3 times) that since the strange node (aka "benign neoplasm") has been there so long and I'm not sick, it must be okay. The oncologist I saw wouldn't examine the new spot; my PCP did, but didn't know what it was. She said it probably had something to do with my reactive nodes.

With nowhere to go (and at the risk of sounding paranoid), I thought I'd see if anyone could answer a couple questions - because a lot of this just seems wrong to me...

1. I was told there are people who have reactive lymph nodes ALL the time - for no reason whatsoever. (I have multiple sites / bloodwork was normal).

2. The first oncologist I saw 2 yrs ago told me he didn't think I had cancer, but put down in his record for that appt "possible leukemia" - probably because of lumbar puncture results; I'd mentioned the results to him because I had one a while back showing NO neutrophils, NO monocytes and 100 lymphocytes (with the high end of norm being 50).
I asked 3 different docs about this, but they said as long as the total WBC count was within normal range, the differentials didn't matter. Do these results sound okay? - and if the differentials don't matter, why do they perform them?

3. Is it fairly safe to assume the strange lymph node is harmless because of the long time it's been there?... I do have some serious health issues going on, but mostly it's blamed on multiple sclerosis (although I was never officially diagnosed and no doctors will see me for it)... none of my medical "care" make sense - I also have stent but am NOT considered a heart patient, either... sheesh! Could it be because I'm on an HMO?

Any answers would be appreciated! - and thanks for your time!

brainman

nowhere2go, I am very sorry about your many health issues. I cannot even begin to know how frustrated you must feel. I do not have much in terms of advice other than to suggest that you find an oncologist who will do a biopsy on those lumps.

1. Yes, some people without any other explanation or reason do have enlarged lymph nodes. By far, the largest cause of enlarged lymph nodes is an infection, but you have had yours for 7 years so it does not sound like an infection or cancer.

2. My father went for 18 months not knowing what was wrong with him. All that he knew was that his red blood cell count was low. The initially did suspect leukemia. However, the bone marrow biopsy was inconclusive (like your lumbar puncture). He even had his spleen removed to no avail. It was not until his white blood cell count jumped to 50K+ that they finally did a second biopsy and where able to make a diagnosis.

3. It is fairly safe but not totally safe to assume that since you have had it for so long that this is not a lymphoma. I do not know how a possible multiple sclerosis or the stent would affect your lymph nodes however, they certainly does make things more complicated. I would think that having a stent would by definition make you a heart patient.

If at all possible, get to a major medical center for evaluation of your whole medical condition(s). You need to keep bushing until the doctors tell you what is going on.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

Thanks for your reply, brainman... very limited with where I can go for healthcare and to tell the truth, I've had nothing but one bad experience after another with doctors.

I did have 2 adenomas (benign) surgically removed 7 years ago, so hopefully this odd node (and new growth) is just a similar presentation. Went through a terrible time with the adenomas, too - although they were bulging and uncomfortable, I went from doc to doc - with one laughing at me and the next getting mad... just like with this situation.

Pretty much resigned to the fact that even if it WAS cancer - the doctors here probably wouldn't help (yes - they've been THAT bad). I need to just forget about it (again) and hope it doesn't eventually impede leg movement or press into nerves - as it is, the hard lymph node has had a "pulse" in it for a couple years (no doubt from resting near the femoral artery). Guess more than anything else, I just wrote to VENT.

Thanks again, Jim!

brainman

nowhere2go, you have found a place to go to vent Wink

I am truly sorry about how your medical team has treated you. My heart goes out to you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

Recently started having "night sweats" again and wondered if anyone knew of OTHER causes for this problem? There's been no changes in the weather or covers used - I just wake up in the middle of the night to find my pajamas extremely damp, to the point of needing to change them.

Any ideas of other causes?...

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

STILL have "nowhere2go" for help, so that's why I ask... my insurance company (by way of their helplines and case workers) wanted me to consider one of their "centers of excellence for cancer care" in order to get a diagnosis and treatment, but I found out I CAN'T go to these places WITHOUT an "official" diagnosis. My doctors still consider the case "closed" and have no interest in pursuing things further.

jfkbluecircle

Hi, nowhere2go,
As Jim said, you do have at least one place to go, and that's here to us; those who are/have faced the same kinds of obstacles and frustrations.

There is an organization in Virginia called the Patient Advocate Foundation. They have a website easily obtained by a google search and it may be a good place to look for some kind of assistance to ease your mind.

Best of luck,
Jessica

Tuesdayk

I feel your pain with getting upset with the doctors.
Im 16 and have been having all the signs and my lymph nodes in my abdominal area are inflammed to 23 mm. I've ran a constant 100 + fever the past month.
And still the doctors seem to be just pushing us away saying 'its just an infection'.

Hope you find your answers!

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

Jessica & Tuesdayk - thanks for your replies!...

I'll check out the Patient Advocate Foundation site; need to do SOMETHING! I've gone "downhill" a great deal the past 2 months and the toll is tremendous; if I can't return to my 2nd job soon, I'll be losing everything (my home, etc). Friends have started to express concern because I live by myself and have no family to help me.

My doctor blames it all on MS - yet I was never officially diagnosed with IT either! CRAZY!... The last neurologist I saw said "something had to be wrong" with the 9 tests I had (supporting a diagnosis of multiple sclerosis) and after declaring them as "being in error", I was terminated. Now, no other neurologists will accept me as a patient.

Both lack of care - and inappropriate care - have left me labeled as a patient with complex health issues and my guess is that doctors are simply afraid to "get involved" due to the time factor and a fear of lawsuits.

nowhere2go · New User Joined: 11 Oct 2007 Posts: 6

Hey, Tuesdayk - (forgot to add!)... I truly hope you ARE only dealing with an infection that will soon heal - you're so young!... but I'm also glad you apparently take an active roll in your health care. Wish I could get more of my friends to understand the importance of doing so... there's now been TOO many occasions where they didn't "get it", didn't question their doctors - with both serious AND castastrophic results.

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