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Feeling Desperate.. Swollen Lymph Nodes 8 Months

Hi All!

I am a 27 y/o female and I have had swollen/achey lymph nodes since February 2016. I am typically not a very sickly person, and rarely go to the doctor. In February I began feeling "off" - have muscle aches and pains, feeling of swollen lymph nodes in my neck, and just feeling generally unwell.

My symptoms have persisted, moving through my body over the past several months. My lymph nodes in my neck, armpits, and left groin have been painful and tender, but none that I can actually "feel". The only noticeable nose is one that popped up behind my right ear in April, was soft and slightly movable, but went back down in about two weeks. I can still slightly feel it under the skin, non-movable and rubbery feeling.

I have seen several GP doctors, a hematologist/oncologist and an ENT who specializes in cancers of those areas. Everyone has told me their concern levels are very low, and I have no relevant symptoms of lymphoma.

I have had extensive testing; six blood tests (only revealing low iron/slightly anemic, low b12) X-rays of the chest, ultrasounds of the neck, abdomen, spleen, and chest. CT scan with contrast of the neck, chest, pelvic and abdomen.

Out of all of these tests, the only thing that has come back is "slightly enlarged" lymph nodes in the armpits and neck. My hematologist said the one in my neck is 1.7cm and he referred me to the ENT. The ENT reviewed my CT scan and stated his concern level was very low. He said the lymph node did not appear abnormal, and was not particularly "large in size". He felt around on my neck, did not feel anything that concerned him, but said he would gladly do a biopsy if that would help my anxiety and fears.

I have a fine needle aspiration scheduled for the 23rd of August. My anxiety/stress the past 8 months has been through the roof, with constant fear of cancer and the unknown. I have no symptoms that I've noticed other than tiredness, but not overwhelmingly tired.

Does anyone have ANY insight?

26 Replies

  • HeatherP143

    Hi Heather. I have been treated for Diffuse Large B Cell Lymphoma which presents itself in the lymph nodes. Firstly let me reassure you that swollen cancerous lymph nodes are very rarely painful. The fact that you have had fine needle aspiration and ct scans which showed nothing untoward is excellent. The fact that your blood test results were a bit "iffy" means absolutely nothing - I had cancer but all my blood tests came back normal! A ct scan with contrast would have shown cancerous lymph nodes - they glow and are obvious. Lymph nodes can enlarge for many many reasons, I'm assuming that you haven't had drenching night sweats or severe itching? From what you have told us, and from my own experience, I would say it is extremely unlikely that you have cancer, much more likely to be some other underlying cause of your malaise. Keep seeing your doctors, they will get to the bottom of it eventually - but meantime stop worrying about cancer.

    • JoyKF53

      Hi Joy!

      Thank you so much for your insight! I have not yet had my biopsy (fine needle) I have that on the 23rd of this month. Praying for clear results.

      The only symptoms I have are muscles aches in my shoulders/collar bone area and just general "achey/tender" lymph nodes in my main cluster areas of the neck, armpits, and left groin.

      The only itching I've noticed is inside my throat the past couple of weeks, I'll wake up in the morning and it will be itchy in the back of my throat and around my nostrils on my face, very random, but that makes me think some sort of reaction or allergies may be causing the swollen nodes, but I just don't foresee that continuing for 8 months non-stop. The lymph nodes seem to come and go. They will swell up and bother me, and different areas seem to be affected

      At different times of the month.

      I know everyone is different, and every diagnoses is different, but Hearing other people's experiences is nice to get different perspectives. I've felt very "pushed away" by most of the doctors I've seen in the past 8 months and I just feel frustrated at this point.

    • HeatherP143

      It really does sound to me like some type of allergic reaction to something. I really don't think that cancerous lymph nodes come and go, once they're up they're up! All the other symptoms sound like an allergy, not necessarily a hay fever type but maybe something in your surroundings or diet. The itching with cancer is usually on the limbs or torso. Please let me know how the biopsy goes, I'm rooting for you!

    • JoyKF53

      I know it has been couple of months dince this post but i have swollen lymph nodes for 5 months. I have headaches, earache, neck aches, tonsil on that side is red, and i feel like something is growing in that side in throath. My jawline feels numbed in that side too and I have widsom tooth thatis impacted. Plus im pregnant 3 months n its hard for doctors to do testings they need to do . I had ultrasound which showed 2 cm swolken lymph node, and my WBC count was 11.6 . Normal is 4.5-10 ... i had one lymph node swollen for 5 mojths n second one appeared a month ago.

    • anesa55559

      Hi there I just wanted to know did you get to text he bottom of your problem as I’m suffering with the same now I have been to the doctors and for scan on my neck but now I have pain in my ears and really bad shooting pains in my temples 

      Thanks very much sarah 

  • HeatherP143

    Hi Heather, I know it has been long time dince you posted this but I wonder if u found out what is wrong ?

    • anesa55559

      Hi Anesa!

      I had a bipsy last August of one of my lymph nodes in my neck which only showed aggetated cells in my lymph nodes, along with slightly cloudy lymph fluid. My doctor said he thinks my body is reacting to something in my enviorment -- basically allergies. 

      My symptoms have continued on and off, but I have tried to put it out of my mind. My doctor told me at my last appointment in Augus that typivally they are looking for a lymoh node that swells up, and doesnt go back down. Stays the same size, or continues to get bigger. 

      I'm not a doctor, but for all of the testing I went through, I do not see as to where pregnancy would not allow the doctors to do what they need to. 

      If your lymphy node is showing 2 CM, have your doctors not expressed concern? Where are your lymoh nodes showing up at? What do they feel like?

  • HeatherP143

    Im having the same issues with my lymph nodes in my neck collar bone and groin for about 6 months now. Have had multiple blood tests and scans and a fine needle aspiration which all come back normal just favouring reactive lymph nodes.. Am getting frequent viral infections and upper respiratory symptoms. Plenty of achiness and pain throughout my body and am still trying to get to the bottom of it!

    • kurt19299

      Hi Kurt,

      Infection is one of the main reasons for lymph system reaction.

      Don't jump to conclusions too soon keep onto your medico re infections and regular bloods.

      If needed perhaps a CT Scan with contrast.

      Hang in there and stay positive.

      Keep in touch.

      Best wishes. ........JohnE

    • JohnEdna

      My ENT ordered a CT scan than after Radiologist found out that I am pregnant he said It will hurt a baby , because CT with contrast pass a placenta. He called my ENT and agreed to wait until I am 20+ weeks . My gynecologist doesn't want me to do CT scan at all because she said if is not urgent it can wait. She said radiation can make s premature labor and can afftet a baby where baby later can develop a cancer . My lymph node started showing up since September but at that time I started working in the house where they have dogs and cats as a babysitter . Even though Im pregnat I dont feel tired, I never did. I did have some itchy skin but once a week which can be due pregnancy. I have fully impacted widsom teeth on both sides and now other side of beck started to swell. I went to oral surgeon and he said if teeth doesn't hurt he wont take them out until baby is born . I have headaches, and pressure in forehead, i have pain in my ear and lower jaw and neck , I have read tonsils ( not strep throath), and I feel like something is stuck in my neck . I have lots of polghem ( thick mucas) hope I spelled well ) between nose and throath that can't get it out. When I have hot shower lymph node almost disappear than comes back . It is so moveable, it hurts on touch , my lower jaw feels so weird. I dont have night sweats, mo fever, no tiredness, my body doesn't hurt except my head and everything on head lol ... i cant believe it that lymph node can be swollen for this long ! Before i found lymph node I had couple of months stomach issues ( did every possible test and it turned I have H pylori, I still have it but cant have antibiotics because of pregnancy). I have UTI too and Im currently on Macrobid . My immune system is not strong to fight infections!.

    • kurt19299

      How big are in size ? Do they grow ? Are they painful and moveable ? I have since September 2 cm was measured in November . I went to two specialists and non of them are concerned abt it . I dont know what to do .

    • anesa55559

      Hi Anesa,

      ​Gee it sounds to be too hard doesn't it? 

      However there are two major factors here.

      1) The Baby and 2) You.confused

      ​I am sure that your doctors have both of you in mind as they make decisions about how best to treat your problem. However I think that since your ENT specialist requested a CT Scan surely he must be of the opinion that there is indeed a problem.

      I am not from a medical background, but I have had problems with Non-Hodgkins Lymphoma since 1994, which started from enlarged lymph nodes in my neck, near the point of my jaw just below my ear lobe.

      I have endured Chemo, MabThera, Radiation, not to mention having a heart attack in the early stages of a Bone Marrow Transplant.eek followed by open heart surgery and 5 Coronary artery by-passes.

      Hey, I am still here, and have been in remission for a couple of years, but I guess, what I am trying to say is to have faith in your medical practitioners and stay positive. 

      If you don't think you are being treated properly, go for another opinion.

      My best wishes to you and please keep in the loop with your progress, we are interested in you.

      Cheers,  JE

    • kurt19299

       Yes Kurt, frustrating isn't it? 

      If you have had no success from your recent treatments consider other options and different doctors.

      Perhaps your infections are coming from other underlying problems.... maybe get a referral to an Immunologist / Dermatologist or even a Haematologist for further investigation and blood work. 

      Could you have an allergy question

      Where abouts are you in the world?

    • JohnEdna

      Have seen a Haematologist, they did the ct scan. Said everything was normal and to come back for a check up in 3 months..

      as far as i know i dont have any allergies. Havnt been sick or to a doctor in about 2 years and now im there every week haha

    • anesa55559

      Im not sure on the exact measurements but i do have them on some paperwork somewhere. They do get bigger and firmer somedays and They are moveable but dont hurt apart from some times i do get pains in them


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