Worried About Enlarged Lymph Nodes And Other Symptoms

Duck03
Duck03 Member Posts: 11 Member

Hello everyone. I have been worried because I have a few lymph nodes on both sides of my neck that are enlarged. There’s constant pain in my right neck where a 1.9cm right lymph node is located. On the left side I have a 2.2cm lymph node that only hurts when pressed. All other lymph nodes in my neck are enlarged as well (greater than 1cm) but have been growing steadily, including the 2.2cm left lymph node, so radiologists think they’re reactive. However, the 1.9cm right lymph node, where most of my pain comes from even without touching, has grown slightly bigger than the others in a short time span and continues to grow. The most recent ultrasound results I got stated that this lymph node is an “ovoid circumscribed solid mass with central vascularity, likely a lymph node”. I’m not sure what that means but unlike my other lymph nodes in that ultrasound, the radiologist had to use the word “likely” to say it was a lymph node, which makes me feel like they weren’t certain. This worries me.

My symptoms are: Nausea, abdominal pain, muscle and joint pain, headaches (migraines occurring almost every day), pain in throat where lymph node is, hot flashes, extreme fatigue, feeling cold randomly, night sweats, high white blood cell counts, and high inflammation markers. Do any of these symptoms correlate with lymphoma?

My specialists are saying they are at the end of the rope for what they can do for me. I have a biopsy referral but I’m on a waitlist and don’t know when I’ll get called. Just trying to piece things together I guess as a way to prepare myself in case I get bad news after the biopsy.

Thank you for reading.

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Comments

  • po18guy
    po18guy Member Posts: 1,342 Member

    Sorry to hear of thus. Lymphoma can produce any and all symptoms. However, many of your symptoms point directly to an acute infection. YEspecially sin e they are centered around your mouth/throat area, which us highly susceptible to infection. Our immune system, when triggered, can produce virtually every known symptom, such as joint pain and many others. Cancerous nodes are generally not painful. Infections grow much more rapidly than any cancer, therefore the nodes are highly tender. Ultrasound is like black and white TV as compared with an HDTV. They are not truly detailed - except in identifying baby's anatomy. Are you on antibiotics or antiviral drugs? That is the usual therapy.

    However, if you have a biopsy, stand firm for the excision of a complete node. SDoctor may want to use a needle to aspirate a sall sample if tissue for examination. However, needle bioipsies have a substantial dfalse negative result, as they extract a tiny amount of tissue. To eliminate lymphoma, an entire node must come out. The node must then be sectioned and its structure examined. Needles cannot do that. At this point, and with the limited info, I am leaning toward infection.

  • Duck03
    Duck03 Member Posts: 11 Member

    Thank you for responding! At first, all of my doctors thought it was an infection as well. But this has consistently gone on for 2 years, since 2020. The symptoms appeared in 2020 and then my lymph nodes started growing around 2021 one random summer, no infections were present. I just developed intense pain in my throat and felt a small bump so I went to an emergency appointment to my doctor. He thought it was allergies and the pain was caused by acid reflux. As time passed, it wasn’t going down so I got an ultrasound done. That’s when we found the swollen lymph nodes. After that I had what doctors think were 2 different gastro infections both a year apart. Was on antibiotics for each at different times but my swollen lymph nodes didn’t go down. I was also on antibiotics recently for an ear infection because my niece passed it down to me. Was on antibiotics but this time my throat is hurting even more than before. I’ve even gotten MRIs of my head and neck as well as CT scans, everything comes back fine except for swollen lymph nodes. That’s why my specialists feel that they’re at the final stages of what they can do for me. Antibiotics haven’t worked in reducing the lymph node sizes, the nodes just keep growing steadily except for that one on the right side that is growing a bit faster.

    I will definitely do this! Do you think I can ask to have the whole node taken out the day of or is this a thing that was put directly into the referral for the biopsy? Trying to figure out where I should call on Monday to confirm.

  • ShadyGuy
    ShadyGuy Member Posts: 812 Member
    edited November 19 #4

    A brief comment. In my opinion you have classic lymphoma symptoms - however the bag of symptoms you describe could be caused by other conditions too. Have you had weight loss? My approach would be to do whatever is necessary to see an oncologist/hematologist. Whatever is causing these symptoms you really need to get to the bottom of it. Good luck.

  • Duck03
    Duck03 Member Posts: 11 Member

    Thank you for your response. I have been looked at for many disorders and diseases and everything comes back negative. I had a time during covid in 2020 where I was around 280 pounds and lost almost 100 pounds in 2021, but that was throughout the year. Although I wasn’t doing anything different or eating different things. My doctor wasn’t too concerned because it happened in the span of a year. Currently I’m maintaining my weight at 199 pounds but all other symptoms persist. As I told another commenter, the symptoms started in 2020, the lymph nodes grew in 2021.

    I have a hematologist/oncologist who has done everything they can. Bone marrow biopsy came back fine but I read that a bone marrow biopsy is not a test that diagnoses lymphoma, it’ll only show on the bone marrow biopsy if the lymphoma is in the bone marrow. So I’m not certain it’s a definitive test. My oncologist decided one of the last things we can do is rule out lymphoma with a biopsy of my lymph nodes. I’m still on a waitlist though and I’m just trying to prepare myself mentally in case I get bad news. I’m ready for good news as I’ve had other tests all come back fine (honestly I’m expecting the results to show nothing but just in case I need to be prepared).

  • ShadyGuy
    ShadyGuy Member Posts: 812 Member
    edited November 19 #6

    I am on my third time and each time I received CT scans and PET scans as screening. I am at a loss as to why your onc has not done a biopsy, given your easily accessible nodes. It is a simple fast test. Best of luck and please let us know what you discover.

  • Duck03
    Duck03 Member Posts: 11 Member

    I haven’t gotten a PET scan done yet. Honestly my oncologist felt some hard lumps around my armpits as well but we never got that checked because we’re too worried about the neck lymph nodes. At this point I’m unsure if I should even ask for a PET scan as I’m on a waitlist for a biopsy (again, only because it’s the last option). I will add an update in the comments when I get my biopsy results back whenever I get the biopsy done. Hopefully it doesn’t take too long.

  • ShadyGuy
    ShadyGuy Member Posts: 812 Member

    Good idea. If a biopsy is positive for lymphoma (or other malignancy) then its time to get a PET to determine how widely distributed it is. I am still hopeful it is not cancer at all but some kind of autoimmune disorder which can be handled without chemo. Stay positive!

  • Duck03
    Duck03 Member Posts: 11 Member

    I will keep this in mind and ask for a PET if it’s something bad. Hoping it’s nothing too. Also it’s not an autoimmune disorder as I’ve already gotten checked out by two rheumatologists, with one who said it’s possible I might have fibromyalgia due to my joint pain (all other tests such as for arthritis and lupus came back negative). This is why all my specialists are saying they’re getting to the end of what they can do for me.

  • po18guy
    po18guy Member Posts: 1,342 Member

    Don't mind me. I had aggressive lymphoma, so am not familiar with chronic symptoms.

  • Duck03
    Duck03 Member Posts: 11 Member

    No worries! I hope you’re doing better nowadays or at least feeling ok. Thank you for your comment!

  • po18guy
    po18guy Member Posts: 1,342 Member

    The classic "B" symptoms of lymphoma are spiking fevers, drenching night sweats, can't-get-out-of-bed fatigue, weight loss more than 10% in 6 months (without change in diet/exercise), and often itching. Having a node out will be crucial, as the 'internal architecture' of the node must be examined. Nodes have an internal structure which lymphoma will efface, (remove/obliterate).

    An analogy might be to that of an orange: instead of a peel, stem, seeds and segments, you find only a mass of clay inside - clearly something is wrong. Roughly, that is what a lymphomatous node will look like inside. Since yours were vascular, that is a good sign. However, having one out (you have hunreds of them) will help to calm the stress.

  • Duck03
    Duck03 Member Posts: 11 Member

    Out of those symptoms I have night sweats and the fatigue. I don’t get fevers but I get hot flashes frequently. The biggest weight loss I had was 12 pounds in 4 months without trying. But honestly that doesn’t sound concerning to me.

    I’m glad that it being vascular is a good thing. At this point I’ve come to terms that I can only wait until the biopsy and that I shouldn’t be worrying right now as it’s not certain until results say it’s certain, if it ever does. Talking here helped ease the worry though. All I have to do now is make sure about the type of biopsy they’re doing so I can have better peace of mind that results will be accurate.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member

    Duck,

    I've been busy myself lately, and am sorry for not having commented earlier. A few things in your thread intrigue me, since much of your diagnostic journey is atypical for most patients. I'm just making these observations at random, and I might have missed a statement or two in your exchanges above. Your answers may shed light on your case for me or someone else reading here.

    1. You speak of your 'specialists' a few times. What types of doctors are these (please list all) ? I would expect primary care, an ENT, and possibly a medical oncologist ?
    2. You made the statement that " 'your oncologist said that he (or she) had 'done all that they can.'" This is peculiar, given that you have never had a node biopsied, which would occur around the first visit with most oncologists. Also, getting a bone marrow biopsy before any form of nodular biopsy is very unusual. And, a doctor saying that they have done all that they can is odd, when they do not yet even have a diagnosis and have never given you oncology therapeutic treatments of any form (I do note that you mention antibiotics).
    3. Many insurance carriers will not pay for a PET without a positive biopsy result; that is, PETS most commonly occur after a cancer diagnosis.
    4. You are on a biopsy 'Waiting List' ? A biopsy is usually a minor, same-day surgery as an outpatient. Are you in a rural area or an area with few very surgical facilities available ? Any vascular surgeon, general surgeon, or oncology surgical specialist should be able to schedule a biopsy fairly readily.
    5. You mention a 100 pound weight loss, which began when you were about 300. This is extraordinary, if you had no changes in diet or activity. It would be a lot, even following bariatric surgery. It is a loss of 33 %. In oncology, weight changes of 10 to 15 % are regarded as 'significant.'

    These answers should clarify things for everyone here,

    max

  • po18guy
    po18guy Member Posts: 1,342 Member

    As of 3-4 years ago, there were 68,069 known human illnesses and conditions. There is at least one more now. You have one of them, or perhaps one of the thousands more which are unknown. If you are in the states, and if you are not already being seen at such a facility, I would strongly advised you to consult at a National Cancer Institute designated comprehensive cancer center. Anyone who has need may located the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

  • ShadyGuy
    ShadyGuy Member Posts: 812 Member

    Really? I thought there were only 68,068!

  • Duck03
    Duck03 Member Posts: 11 Member

    No worries, thank you for your response. I’ll answer your questions:

    1. I have a primary care doctor, have gone through 2 Rheumatologists, have gone through 2 Hematologists who are also Oncologists (am currently working with the 2nd one). The first oncologist worked at a cancer center and I was working with them on a Hematologist basis as I’ve always had unexplained Iron Deficiency Anemia even without periods (am on birth control that stops them). I am working with a Gastroenterologist who thinks my abdominal pain may be a gynecology issue as the gyn I worked with found some endometriosis 2 years ago, a gynecologist who I’m replacing (have an appointment with a new gyn this month) because they aren’t taking me seriously and don’t want to check again for more endometriosis or adenomyosis.
    2. All doctors except the primary care doctor has told me they can’t do more for me (which is why I changed doctors), or that they’re nearing the end of what they can do for me, or (in the case of my gyn) are unwilling to continue tests or checking for things. I feel like I’m crazy for trying to figure out what’s wrong. I feel terrible every day and having doctors tell me that they can’t help me makes me feel like I’m in the wrong and like maybe nothing is going on with me. This biopsy wasn’t even supposed to be a thing because my oncologist didn’t think I had anything and she couldn’t find any blood related issues. The reason she offered a biopsy is because my iron levels dropped again and my primary called her asking her to please help me in any way possible.
    3. Thank you for telling me about the PET scan, I’ll wait until the biopsy results.
    4. I live in the US but the hospital my oncologist works at is short staffed in terms of biopsy doctors. There’s only one doctor performing biopsies currently so a waitlist was developed. They’re taking patients week by week so I’m unsure when I’ll hear back to schedule an appointment.
    5. Yes, I decided to look back at my health records and was relieved to find out that the 100 pound difference actually happened in the span of 3 years and not one. Covid made everything seem like one long year. I apologize for that false info. The most recent weight loss I’ve had without trying was when I first discovered a swollen lymph node (the one on the right that hurts), which was a loss of 12 pounds in 3.5 months (according to the weight records in my doctor’s online portal). I don’t think that’s of concern though.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member

    Duck,

    Your timeline now makes more sense to me. You have gone through a widespread shuffle, such as quite common in US healthcare these days. The bottom line of everything you have learned to date is that the next step needs to be the biopsy, and as several have mentioned, an excise biopsy is to be preferred. I had an aspirational biopsy myself several months ago, and all it did was slow things down for me, as aspirational does not allow for staining slides, but are used with flow cytometry only.

    Few conditions cause night sweats: mostly just blood cancers and menopause, but you mentioned being on birth control. I myself have had unexplained anemias a few times. With all of your symptoms combined, a biopsy is clearly much needed. I hope you have answers soon,

  • Duck03
    Duck03 Member Posts: 11 Member

    I’m going to call the hospital today to see what kind of biopsy they’re going to do.

    Yes, birth control has been what’s controlling my periods. If I have periods I get severely anemic. However it seems that part of my anemia isn’t period related. But I have no blood disorder as shown by the bone marrow biopsy. I didn’t see night sweats being a part of the birth control when I researched it before but I’ll check again.

    Thank you, I hope I get answers soon too, but hoping for good results (nothing serious).

  • Duck03
    Duck03 Member Posts: 11 Member

    Just updating you since you said to update. I went in for the biopsy today and had what I’m now considering a failure. The biopsy did not happen at all. The ultrasound tech didn’t look at where my swollen lymph nodes actually were. My lymph nodes are the biggest at Level II (the submandibular area of the neck). She looked at the center of the neck where smaller lymph nodes are located. These lymph nodes were never big to begin with, just 1.6 cm or less in size. The doctor doing the biopsy said that because they weren’t the size previously mentioned (as in he was confusing the level II lymph node sizes for these smaller level III lymph nodes) that we shouldn’t have the biopsy because if it were cancer, the lymph nodes wouldn’t shrink. But again, he was mistaking the location and sizes of the lymph nodes and missed out on getting a biopsy on the actual problem ones on Level II. I’m upset I didn’t speak up, I was nervous and thought he had looked at the ultrasound images I had brought with me…I was mistaken. Now I have to go back to the hematologist and ask for another ultrasound to see if those lymph nodes are still enlarged and then maybe see if we can ask for another biopsy. I feel very stressed.

  • ShadyGuy
    ShadyGuy Member Posts: 812 Member

    I can see why you feel stressed. 1.6 cm is roughly 2/3 of an inch, plenty big enough to find and extract. Sorry this happened. Hopefully your hematologist can straighten this out. Be strong.