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    Old 10-09-2004, 06:57 AM   #1
    NY 1009
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    Enlarged lymph nodes.

    I have a huge node that's back again that was once removed back in 1997. it's not cancer but something that wasn't normal either. It's called Atypical follicular lypmhoid hyperplasia. when you palpated it felt like rubbery yet a hard consistency and it would wax and wane, (big one day, and smaller the next) no pain, no symtoms. I was put on an antibiotic to see if would go away, it didn't. the actual size when it was finally taken out was 4 x 6 cm. It felt much smaller when I felt it from the outside.
    It is now 2004 and it's back. I am now having symtoms. I went back to the ent last Nov.of 2003 to the same ENT dr. he said it could be scar tissue but it's hard to determine this from an MRI or cat scan. It's now 11 months later and it's much bigger. I'm not going back to the same ent. My family dr.sent me to a general surgeon located in the same building as her. I guess she knows him so referred me to him. He refused to biopsy it. this the beginning of 2004. January to be exact when it wasn't as large as it is now. he said if he went in there only to discover it was scar tissue, he'd be mad. He didn't know whether to biopsy the node under my armpit or a very small one on opposite side of neck where the original main one is. I didn't even know there was one there. It was so small. and the pathologist said they couldn't do another more extensive test on the sample because it wasn't a sufficient amount of tissue. I am sooooo angry and disgusted with this dr. they're afraid to go and biopsy this large one because it's on the carotid artery. they're afraid that they could mess up. I could feel my blood pulsing through that vein when your'e palpating the node. I have hypertension too and I can't believe how hard and forceful the blood is pushing through that particular vein. I understand they don't want to take the risk. But I am not feeling well now since end of last fall and I lost 16 lbs without even trying in a matter of four months. I am feeling extemely weak these days where I can't even climb up a set of stairs or go for walks where there's an incline. I love to go out at the park and trails for excersise. I have had horrible night sweats where it looked like I had wet the bed and as if I just stepped under a shower. Now I'm woken up when they're just beginning. I just don't feel well, included my cognitive thinking. I feel foggy most of the time and can't even carry on a conversation on days becuase I can't even rember simple words. It's ridiculous. and there's no answer.

    all my bloods are normal other than a slight decrease in my red blood cells. the doctor hasn't said anything about it. I read my report. I just can't donate blood anymore because of this. the last time I did, I was sick for a whole week. they really shouldn't have taken my blood I was told from a nurse freind of mine that I worked with.
    I don't know what kind of specialtist who deals with lymphomas on a daily base to test this darn node. Do I go to sloan kettering where they have these specialtists? I understand there are over 34 subtypes of lymphomas and they're very hard to diagnose sometimes. thanks to the expert pathologists out there who are being diligent on doing research and learning new things all the time. Atypical is an abnormal result, but not cancer. It looks disturbing to the pathologist when they look at it, so my ENT sent the biopsy to another lab. it took weeks to get my results back. my ent was relieved and so was I when we finally got the answer, but there are so many misdiagnoses out there. Sometimes lymphomas are easy to diagnose, and there are others that are very difficult. I've read alot lately on this subject and find it very amazing. there's a particular foundation that is doing wonderful research and patients and families of lymphoma patients can go to this site to learn more about it. But there is no answer on what type of doctor to go to besides a hemotologist. I went to a hemotogolist when it first started growing back and when I was filling out the patinet history sheet, it was asking questions like do you have numb hands or feet, do you have palpations,etc. stuff that had nothing to do with enlarged lymph nodes. Each doctor has a different history sheet to fill out. So after I filled the sheet out and was waiting in the room for the dr.to come in, the first thing he said was, you have anxiety. the things you checked off show me this is what you have. He didn't even give me a physical yet to feel the enlarged gland for crying out loud. He said that I've probably had it all my life and will have it for ever,( I know I'm an anxious person, always was fast, thought fast, moved fast, etc.) nothing new to me. so how does anxiety cause enlarged glands under your arms and on your neck?
    He told me to come back and see him if the node starts growing larger. I haven't and I won't. My family dr.told me to go back. I told her NO WAY. so I guess it's up to me now to take my health into my own hands and do all this research on my own. which is not a good thing in some peoples eyes. I just wish that there's someone out in this forum who can help me and guide me in the right direction of where to seek treatment next. I am fed up with doctors. all they care about is shoving patients in to their 15 minute slots and if you don't hurry up and tell them what your'e going through, they get aggrivated and shove you out the door.
    what ever happened to all the good doctors that used to be out there? I feel lke the whole medical field is turning sour and bad. No wonder people are taking their health into their own hands and finding a doctor that we're satisified with. That can take multiple visits. it's like trying to find a good therapist. they tell you it's o.k. to go through many drs till you find the one you feel comfortable with. I thought that was just related to mental health, not physical health. what happened to our system?
    I'm venting as you can tell and I apologize for that. Hope someone has an answer out there for me, and soon. I'm at my wits end.

     
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    Old 10-09-2004, 07:51 AM   #2
    ysco
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    Re: Enlarged lymph nodes.

    Your story is truly moving... it seems like you were out of luck with those doctors. I do feel your frustration and completely understand and justify it.

    I will give you one advice: SEE OTHER DOCTORS, SOONER THE BETTER. Those you mentioned give a seriously malpracticing impression. Once you realized this is the case it's time to move on. Sadly some doctors are like it and there is little you can do. But I don't feel it's a majority.

    What kind of doctor should you see? perhaps an ENT specialist, surgeon, even an oncologist. This mass you have obviously needs to be removed or at least biopsed, but it's clearly a very delicate matter due to its location. I can somewhat understand the doctors who are afraid to take this risk there, it's not easy. Yet it's enraging to see they are doing nothing about it and seemingly look for some kind of settling diagnosis to avoid taking this action.

    Have you been suggested a FNA? This is a far less invasive and probably safer procedure where a little tissue is taken through a needle. It is not 100% accurate but is pretty good at shedding some light over abnormal lymph tissue.

    On another note I don't think lymphomas are particularly hard to diagnose comparing to other cancers. It actually depends how proficient your doctors are and how quickly they refer you to undergo the crucial determining test (biopsy). As you probably know lymphomas can only be diagnosed through a biopsy, of which the more invasive procedures rarely yield inaccurate or misdiagnosing results.


    Your overall condition and symptoms obviously suggest something is not quite right. It's a brave and wise decision you got to take your health into your own hands and do something despite the doctors' opinions.
    I can only express my solidarity with your distress with those doctors.

    The bottom line is, in my humble opinion, you must seek a second opinion.

    Remember you have to right to insist on further tests even if the doctors are reluctant to do them. Nevertheless don't rush into taking hasty decisions, do hear what the doctors have to say. Hopefully, you will find a way through.

    Good luck.

    Last edited by ysco; 10-09-2004 at 08:03 AM.

     
    Old 10-09-2004, 11:42 AM   #3
    MonNiteFootball
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    Re: Enlarged lymph nodes.

    We are on the same exact path my friend and it's truly frustrating. I had an inguinal node removed in August that yielded the same results as you. Not cancer, but not normal either. Atypical follicular lymph hyperplasia. Was told it could be a precursor to lymphoma. I have right sided cervical lymphadenapothy and just had two other lymph nodes removed from my neck which I'm waiting on pathology results for. Yet, my doctor chose not to remove the largest node as it's sitting on the carotid artery. When I woke up from anesthesia I was pretty angry that he had chosen to take the easy route when I gave permission to take the bigger one in order to be dx'ed properly. Since we are on the same path, let's see if we can't help each other. My head and neck surgeon is the current doctor I'm seeing, but I'm going to do some more research and see what I can't come up with. Like you, I have done plenty of research. I have the same symptoms as you as well, weight loss, fatigue, anemia and DRENCHING night sweats. I can feel them coming on so I have woken myself up to keep from completely drenching the bed and ending up sleeping on towels. I hear your pain and if it's any consolation, just know you are not alone. Hopefully, between the two of us, we will be able to get to the bottom of it.
    I will say this, find another doctor, preferably an oryntologist(sp?) asap, someone who is willing to remove the node. Preferable someone with superb surgical skills as ysco said, it's a very sensitive area.
    As patients, we are the client and our doctors are supposed to take every appropriate measure to dx us properly. Even if the measures are risky.
    Keep us posted on your plan.

     
    Old 10-25-2004, 09:39 PM   #4
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    Angry Re: Enlarged lymph nodes.

    Wow - I can relate to your frustration. I miss my old doctor who actually delivered me. He would look at my fingernails for signs, feel my neck, test my reflexes and simply chat with me. Asking me what was going on in my life and so forth. He would have researched my last visit before we met so he could remember my history and discuss that. Those were the days... they are gone.

    Rush, rush... hurry and make your symptoms seem legit. I was actually relieved when my mono test came back positive 3 years ago because the dr. kept ignoring my symptoms and attributing it to depression. I KNEW it wasn't just in my head! Vindicated at last. But here I go again... more symptoms... small time frame with each visit to spill out symptoms like some raving hypochondriac in hopes that she will put it all together and tell me something... ANYTHING for crying out loud.. and all I get is referrals out to other doctors. (which at least is something. my last HMO doctor wouldn't even refer out!)

    It is sad. You would think drs would care. I mean... isn't that what we are all hoping for in the long run... that someone cares that we feel lousy? When the doctor dismisses you as if you are wasting his/her time, it is so humiliating. It makes us come here - to the internet - where we try to diagnos ourselves instead of seeking the medical attention we may actually need desperately.

    Best of luck to you. Keep switching doctors until you find one that LISTENS. And as for me - I am getting tough these days. No more Ms. Nicegal about how lousy I feel because it is MY BODY, MY HEALTH, MY LIFE and it is THEIR JOB to help us live it to the fullest if we aren't well. I am going to tell my new ENT that I see in a couple weeks that I want answers. That I want his undivided attention and his professional decency as well as human decency. I would rather be a little afraid of the confrontation than to be afraid that there is something wrong with me!!

    Take care! Keep us posted!
    Blessed Journeys,
    Peanut

     
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