Lymphoma fear is ruining my life :(

[sovetcke]

Hello everyone,

I am 27 year old Male, healthy, non smoker, and a bodybuilder, have swollen lymph node on the left side of my neck right under my jaw line in the upper neck for 3-4 months!

This all started like a chain of horrible horrible anxiety for months,


First, had back pain from bodybuilding, lived in hell thinking i had a herniated disk, did a lower back MRI and it came back as muscle spasms...

moving on, later i had a full blown panic attack which led to an ocular migraine... of course doctor google told me it's a stroke !

did a brain MRI and everything came back normal, but this started all my panic..

i had a sore throat on and off for a month , and was always feeling light headed and kind of drowsy ( i take no medications at all, i try to avoid them as much as i can)... this lasted for a month, then i had a horrible FLU that lasted a week, after i recovered... i developed tingling in my fingers for 2 weeks! ofcourse i thought it was MS, came back to the doc and he told me your brain scan was fine so you don't have it.

I developed an ear infection in my left ear from swimming, and treated it with a round of antibiotics,

A week later, i was checking my Lymph nodes.... oh my god, i have a small lymph node on the left side that is slightly visible if i push my head back and neck forward,

Of course google said i have lymphoma... 3 weeks passed and it was hell, i was super depressed, afraid that i won't be able to marry the love of my life, neither continue in my career, and even had another panic attack that hit me like a migraine while reading about cancer.

then i decided that i need to be reassured, i can't live like this....

went to an ENT, he put a small scope into my nose and checked my throat and said all fine, i showed him my swollen lymph node and he said it's not big, and nothing to worry about, it might even stay all your life and sent me home...

that made me feel better for like, 3 days, but while sitting home, BOOM itching all over body, small itches that come and go, i lightly itch and it goes away...

i went to a very well known oncologist, and i was literally shaking while telling him my story.. he checked it by hand and said yeah it's slightly swollen but nothing to worry about it's small, but i asked him for a blood test, and a CT scan, he agreed if that made me feel better,

another week of nightmarish worry...

Results came, blood tests were all normal, CT scan showed multiple swollen cervical lymph nodes and largest is 1.7cm, doc looked at the scans and said he does not seem to be worried, ofcourse i went back home, still worried...

2 weeks later i got FLU and while sick i felt that node hurting,

2 months passed and that node was still there, same size, but i stopped touching it which i think made it shrink very slightly, or stayed same size, i dunno...

last week i went to a dermatologist, and explained him my itch, NO RASH, sometimes it gets red (maybe from scratching?) it's mild, and i sleep normal, but sometimes it becomes more intense within the day, and sometimes it's less, but it's annoying, it started with prickles, now it's just random annoying itches that i can't seem to ignore.. he did not even think twice wrote on my insurance paper a name of medicine and told me to take it for 2 months and all my life if i want to, and all will be fine...

i went to the pharmacy and it says "physical urticaria" and he gave me an anti-histamine that is non sedating,

i took one pill yesterday, and i don't itch at all...

now i am scared again, because i remember reading that lymphoma makes the lymph nodes secrete histamines, that makes skin itch, and now i blocked the histamines and i don't itch..

Living like this waiting for the worse is just sad... i know it's a long post, but i never let this out to anyone fully like this, not even my girlfriend :(

[popejoan]

Hello welcome to the forum, and I'm sorry you're going through this.

I don't think you have anything to worry about. You've seen an ENT specialist, an oncologist and you've had all the tests possible and they all came back fine. Your lymph node is only slightly swolen and you said you had Flu and an ear infection, ofcourse they make lymph nodes swell up, and they sometimes don't go down to their original size. I had a big acne under my nose and it made the lymph nodes in my neck swolen.

if it's gonna help, I have two swollen lymph nodes in my right groin, they are bigger then yours and I have overall itchiness for a long time. I haven't seen any specialists as my GP wanted to wait for a month to see if they will go down on their own. They didn't but I'm not worried.

Hodgkin's is very rare and although more common non-hodgkin's is mostly related to age so rarer in younger peoole. I was worried about lymphoma I even started a thread here but then I stopped worrying and my itchiness got better.

You should stop googling. It hasn't helped anyone yet and it won't help you either. You were told by two specialists that you don't have lymphoma and numbers of tests confirmed it. Your next step should be working on your anxiety. Hope this helps.

[sovetcke]

Hello PopeJoan!


The last doc seemed kind of mad, and just said if you don't wanna stay worried about it go find a general surgeon who agrees to biopsy it, i doubt they will on that size thought, and just went off to something more important, there i decided that i am going crazy, i am not going to start doing surgeries for biopsies, this has been on going for years, and every time i think "That's it, this time its real"....

Its time to learn how to be relaxed, self re-assurance, and just enjoying life instead of living in a nightmare of possibilities :)

Am glad to hear that i am not the only one like this, the more people who share the same symptoms the less chance it's something horrible :) (Anxiety talking - feels like i have an evil mind twin always reminding me about the worse case scenarios)

Thank you so much for replying and your time,

[telbanham]

I'm going through the same thing. Found a lump in my right groin over the weekend. It's a swollen lymph node. I have no symptoms but feel I've lost weight. I've googled and I'm literally going crazy. Apparently having no symptoms of infection is worse with a hard solid lump as why would the lymph node be swollen if not fighting off an infection?

I feel your pain, Ive worried about tones of things in the past Health wise but this one feels real, like 'This is the one'!

Plus I've started itching all over now, but I'm trying to reassure myself that its my mind making that happen. Just like when you think of spiders, ants or head lice and your body starts itching automatically for no reason.

At least you've had opinions of numerous professionals and experts who have told you not to worry. I know this doesn't help when you're deep in anxiety but it should do.

[DavidCQ]

I am going through exactly the same thing. I have been into the doctors 3 times to be told nothing is wrong even though I can feel myself getting worse.

I have noticed that if I google an illness that I think I may have I can develop the symptoms that it says you should have if you have it.

I am currently breathless, swollen glands and my ears are constantly blocked and I need to pop them.

I have had tests for strep throat, various blood tests and glandular fever and all came back negative.

I am still not satisfied that I don't have it though.

[Bluebird5]

Hi Everyone, I am new here, but writing because health anxiety has ruined my life. I too, am worried about lymphoma. I was diagnosed with Sjogrens syndrome about 5 years ago (even though I am seronegative). This autoimmune disease mimicks many other dangerous diseases and it can affect multiple-organs as well. My dry mouth/throat really got to me this year and I was hit with debilitating fatigue. I went to an ENT, feeling some swollen glands in my neck too. He said he could feel them, but did an MRI and my lymph nodes are normal size. What came back abnormal, was my tonsils and adenoids enlarged on the MRI. He called me back in to do a scope. At the time, I thought, oh, no biggie, probably tonsil tissue enlarged from allergies, etc. But Dr. Google said I had many cancers or lymphoma - So I immediately went into full blown health anxiety/ocd mode and started checking every symptom I could feel, driving myself crazy. The ENT did his scope and said he was 95 percent sure I did not have cancer, but could do a biopsy to be 99 percent sure. I told him I wanted the biopsy, so we did the surgery within the month. I called in for the results and the intern said, 'no malignancies'. I was so happy and relieved and willing to let go of this hellish worry I carry around. But I read my biopsy report on line and it said, "CD4:CD8 ratio is markedly elevated" It also said, "This assay is not sensitive to Hodgkins or large cell lymphoma". When I read this, I wasn't that worried, I did google it, but I just wrote it down as a question for the doctor, confident that he'd tell me it was nothing and all was fine. So I went to the followup appt and asked the doctor the questions. He said he didn't know why the pathology lab even ran that ratio, that it was probably fine, but sent me to his lymphoma specialist just to be sure. So I left there certain I had Hodgkins lymphoma! I googled, and called everyone, telling them I most likely had Hodgkins. I felt brave, like I could face this and move forward as soon as I learned the next steps. I wasn't even scared. Then the next day, the doctor contacted me and said that the lymphoma specialist reviewed my records and told him I did not need to see him. The lymphoma specialist - who is the director of the MGH lymphoma program - said there was nothing to be concerned about and all he'd do is review my records, say not to worry and send me home. He told me to followup with my rheumatologist and ENT. So I was actually ok with this, but still confused. The next week, I went to my PCP to discuss all. My PCP reviewed all and said he was 'not comfortable' with this and sent me to his own hematologist/lymphoma doctor! In the meantime, I had blood in my urine and completed a workup with a urologist for this who said all was fine, thank goodness! Since then, I've contacted the ENT because I've had more and more symptoms of all kinds of things wrong with my neck. Sores in my mouth, swollen salivary glands, muscle tension, jaw pain. I even went to the ER because my carotids hurt. The hematologist appointment is in 3 days. I can't stand this anymore! Everyone is saying, just go to the appointment 'for piece of mind' but having the appointment has ruined my psyche, I am so anxious!! Every time I walk by a mirror I check my neck and glands. I swear I can now 'see' swollen glands in my neck, but my husband and the doctors so far, have said there are no hard lumps. My salivary glands are swollen and hurt when I eat anything acidic or drink alcohol (which I don't very often). Of course, this is a sign of lymphoma. I am 95 percent CLEARED of lymphoma. The director of MGH lymphoma program and an ENT said, "NOT TO WORRY" - My ENT said if my PCP wants to send me to his hematologist, fine, but it's not a big deal and all should be 'reassured' that all is just autoimmune or another illness, infection, etc. So I thought maybe this whole thing was a food allergy? I went to my food allergist. He really really freaked me out. He said my CD4;CD8 ratio is ONLY caused by lymphoma and I should seek a bone marrow biopsy!!! I had a complete, almost psychotic episode after that because I could not comprehend or function after what he said. Turns out, he was just wrong and feeding into my anxiety and probably his own. So all of this 'double checking' all of these 'reviews' of my own medical records and extra questions ... They've ruined my life ... They've even made some of my doctors anxious. I have wasted many many hours googling variants of my health concerns, sometimes getting reassurance that the scope is broader and I won't get lymphoma other times, totally convincing myself that I have it. I will go to the hematologist appt on Tuesday, but I have to tell you all, I have hit a rock bottom in how health anxiety has ruined my life and it's hard to get out of this loop. I asked my PCP for meds for anxiety on Monday but will wait to take them after I see the hematologist because I don't want to freak myself out with more symptoms. Also, I am eating like a machine, so I don't scare myself by losing weight. I do have night sweats, but also menopause. Sjogrens patients are at risk for lymphoma, but my ENT said he checked for that and not to worry. It's hard to just accept this. I should go to the hematology appt relaxed and asking my questions, rather than planning to take the rest of the month off to do chemo or say good byes. It's awful how I check my symptoms all the time and have wasted many hours circling google. If I am sick, I will regret wasting all of this precious time worrying about my health rather than living a life that I love with my family. Please Help.

[Alamie]

I have 3 swollen lymph nodes in my neck which are there constantly. I've been to a haematologist who has told me they are fine and some peoples just stay up and never go down. I also was convinced I had lymphoma

[DavidCQ]

I have had this for nearly 4 months and it is driving me mad.

Anyway at least we all know we are not alone in this.

[Bluebird5]

I see the hematologist tomorrow. Everyone is saying it's the best thing to do. The pain in my neck is increasing and driving me crazy. Other tests are coming back normal, so this is the last workup to go. I also know that poking at my neck glands is making the situation worse. I stopped doing this over the weekend and am just taking Tylenol until I see the doctor tomorrow. Trying to do some fun things, took my daughter to a movie, trying to teach her how to ride a bike, watching old sitcoms to make me laugh, but the back of my mind is always this worry and constant argument with myself. I want to be able to not worry excessively no matter what my health condition. I am just starting this road, but have hope, indeed, that I'm not alone. It helps to know most people feel worried with medical stuff in different degrees. I just went to the urologist for the followup of my CT scan (which was normal, yay!). She said, "at least that's one worry off of your plate - It's hard to have all of these possibilities in the back of your mind all the time, I hope tomorrow goes well ... " She was so nice!

[Bluebird5]

Good News! I went to the hematologist today and she said she is 99 percent sure I do not have any type of lymphoma. She reviewed everything and will send my path report to her lab, but could not find any nodes of concern or labwork that could diagnose lymphoma. She said my CD4:CD8 ratio happened because my CD4 was high. She said this could be caused by many things, my autoimmune disease or an infection. I have a pretty bad infection in my mouth and glands right now, she could see that, but said there was no indication that this was from lymph cancer. She was not happy with my food allergist who told me to request a bone marrow biopsy. She said he had no idea what he was talking about in this situation and was scaring me. She said, a bone marrow biopsy is to stage an existing cancer, but this is far afield from what I needed to rule out lymphoma. She also said that not everything in a lab report can always be explained, that in my situation, a CD4:CD8 ratio elevated is best to be ignored rather than investigated, but we did not know this so it was good to see her. My followup will be with my autoimmune doctors for my Sjogrens syndrome and to try and recover from this current viral infection I have. I still am not well, I have horrible mouth sores, fatigue and throat swelling. I am taking an antibiotic in case it is a salivary gland infection and trying to stay hydrated. With the sores, she wondered if I should be tested for HIV, but then said no, because my CD4 count was HIGH and in HIV patients it is low. (I didn't think I was at risk, but she was covering all bases.) I am very very happy with the outcome today. I don't even need to see the cancer doctor again unless something else comes up.

I hope this helps reassure others who have similar symptoms or vague biopsy results. It is hard to wait for the resolution and good to get support along the way.

btw- I tried Prozac to help with anxiety and it caused a lot of sweating, fatigue and some stomach upset. I tried Ativan and it worked, but it builds tolerance, so I won't take that anymore. I will try the Prozac again because it did help my mood, but it I want my other health issues to settle down first.

Good Luck Everyone!!!