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lyssa19958

Swollen hard occipital lymph node over a year. Help

To make things brief. Im extremely terrified. Ive been having the C-word scares for over 3 years first it was when i find out i had a lump in my breast after i had my 2 kids, and find out it was a fibroadenoma a benign tumor and been constantly checking my body for any lumps and bumps since then one day i recently notice a hard lump a little below my hairline i believe an occipital node was swollen since last march when i discovered it. Its hard barely movable and wax and wanes. One moment feels bigger then later feels a shinks a little. Im 22 years old with no family history but constantly having worries of this possibly being lymphoma. I cant talk to my fiance about this or my family members because they think its my anxiety agian because ive been in the docs in and out since i was 16 about noumerous problems that werent serious at the time but this obviously is because i have a defiante hard lump fixed that been there since last year march, also when i got it discovered i got a CT scan done blood test that came back negative for anything, just said i got a few swollen lymph through out my neck that i cant feel also swollen but it looks normal and nothing suspicious. Since then i went ahead and let go of the situation until recently i felt it randomly agian and i think it got bigger!!! I dont know if its because i haven't felt it in awhile and i forgot how it felt or what but now im super scared keep shaking so worried about this. I attend college and also a mom and now this is something agian i have to worry about it keeps following me. Now i pushed my doc to do fna biopsy that he dosnet recommend because he says its only serious if its a size if a golf ball then he will worry, but will only do a fine needle biopsy and not a open biopsy thats more accurate in diagnosis, then a fine needle. Because he thinks its not that serious to go ahead and do a full surgry on it and open me up. Which i think thats the only way for sure to know what i actually have. Some fine needle arent actually 100% accurate but thats the only thing i got right now. Im just really scared and think it grew. I dont know what to do in the meantime but just freak out im really scared. I would like to know if anyone else was ever in the same situation as me and had a hard lymph node swollen for over a year and it turned out to be nothing ?? Sorry how long this was

Thanks.

15 Replies

  • lyssa19958

    Hey Lyssa,

    Cool it , worry will only make things worse for you. A mass or lymph node the size of a golf ball is ridiculous before taking action.

    Generally nodes below 20mm are dismissed according to my oncologist.

    As a survivor of NHL I can sure appreciate what you are thinking and how you must feel.

    My diagnosis took nine months of to and fro, from a GP who said that I had a dental problem.

    From there I had bloods which were always ok.

    FNA was the first positive that I had.

    Bone marrow biopsy was the next confirmation.

    The rest is history.

    I was 47 when I first noticed a small lump beside my ear, it was annoying when shaving or using the phone. Apart from that there was no pain.

    Over the 9 months it grew from the size of a pea to the size of an apricot seed. Other nodes were detected in my neck and surgical biopsies were taken.

    After 20 odd years of chemo, radio, mabthera and an autologous bone marrow transplant, I am finally in remission and have been there almost four years.

    If your doctor won't give you what you need to clarify and resolve your fears, change to another and try for a referral to a specialist, perhaps a hematologist or oncologist.

    In the meantime try to relax and be positive, enjoy your baby and fiance.

    Stay in touch via this link. Good luck.

    JohnEdna.

    • JohnEdna

      Thank you and yes i defiantly might change doctors asap. He's very arrogant and seems to brush things off because im young. Also you said you had a fine needle that told you it was positive? So maybe having the fna will give me some sort of accuracy.

      And my other biggest fear is having surgey and getting put to sleep with anesthesia. I wish there was a way they can numb the area and take the whole thing out!

      Thanks so much your very helpful!

    • lyssa19958

      Yep, again Lyssa,

      What works for some is not necessarily what is going to work for you.

      I guess I am one of the lucky ones who did get positives from the FNA. (It isn't a painful procedure.)

      Surgical biopsy also can be done using local anesthetic, which again is no big deal.

      If facing these procedures is freaking you out, you can ask for sedation to help you relax.

      My role in this forum is to care and share experiences and to offer support, NOT to susuggest cures or offer medical advice.

      I notice Joy has replied to your initial post.

      My advice to you is to listen to her, she like me, has been through the mill and is "ONE SPECIAL LADY", who doesn't give false representation on any subject, particularly where Cancer is concerned.

      I do hope that between the pair of us, we have been able to give you some form of solace.

      Keep in touch.

      JE

    • lyssa19958

      No, I never had a fine needle, I had a surgical removal of the lymph node. FNAs are not a hundred per cent reliable. I didn't get put out for the surgery, it was done with a local anaesthetic and was very quick so ask for that. Keep in touch.

    • JoyKF53

      Hello Joy, my major worries are over, but you still have issues with the gamma knife appointment yet to come.

      My best wishes for that. How is David's progress?

      I had my CSI CT guided c6 nerve root injection at 10 am today (Thurs)

      Anasthetic worn off and about to go to bed. Here's hoping. ...... good night.

      Talk again soon. J

    • JohnEdna

      David was fine til he had his post op check up, the surgeon, in his infinite wisdom, decided to cauterize the wound where the drain was removed (fair enough) but also his other wound where the infection had been. That was healing really well til the surgeon messed around with it and now it's leaking like mad! The nurse will be in tomorrow so we'll see what she thinks. Your injection sounds horrendous, I haven't a clue what it is but I'm very glad I haven't got to have one! And I hope you recover from it quickly! Don't worry about the Gamma Knife - it'll be a piece of cake!! Lol Speak soon.

  • lyssa19958

    I'm guessing you're not in England (mom instead of mum) so no point in telling you where to go for help, so all I can say is change doctors. I had a small lump behind my ear that turned out to be Diffuse Large B Cell Lymphoma. Having said that it may reassure you to know that between seeing the specialist and surgery to remove it (which was only three weeks) two more had come up below it. So I would think that if that is the only lump, and you've had it that long, it's unlikely to be cancer as more lumps would have appeared. But, to put your mind at rest, change doctors and get that surgical biopsy done - you're absolutely right, a FNA is not as reliable as surgery. Keep in touch and let me know how you get on.

    • JoyKF53

      Thank you for your reply. I find it helpful to speak to someone that has been thru the situation. I suffer from really bad anxiety so knowing this might be a real situation i may have to deal with is really getting to me. Its just hard to cope with the "what ifs.. " But my real question is , i gotten a ct scan done which came back clear and an ultrasound that came back clear, if i do have this... Then i cant beleive the ct didnt catch it, i thought a ct scan is really good at usually detecting something like this? Because my ct was good honestly is the only reason im actually getting by and holding onto .

      And also i live all the way here in the U.S in florida.

      Thanks agian.

  • lyssa19958

    Hello,

    Just read this today.  I just found out today that I have a large swollen occipital lymph node as well.  I probably have had it for a very long time and did not realize, most probably for several months.  My dermatologist took a look at it today, and did not seem concerned. However, I will get a second opinion from my general practitioner.  Will keep you posted when I get more information.  I hope you are doing well.  Please try not to drive yourself crazy worrying.

    Just curious, have you had hair loss as well? I have been trying to find out why I am losing hair and thinning.  Wondering if the swollen lymph node could be related.

    • caterina87106

      Hi caterina87106, did you ever find out what the cause was of your hair loss and swelling occipital lobe, and were they related? I’m having some of the same symptoms (hair loss on the frontal crown, swollen lobe, and also high testosterone levels and mildly elevated TSH levels). I was also recently diagnosed with POTS, a condition that increases your heart rate. Perhaps they’re all symptoms of an autoimmune disorder?  Thanks! 

  • lyssa19958

    I know this was posted a bit ago, but I have the EXACT SAME THING! I’m 23 have 3 kids and attend college, the node popped up out of no where and goes up and down in size, never over 2 cm. My doctor is working with me but isn’t concerned, I’m a sever hypochondriac and the internet has damaged me! 

  • lyssa19958

    Hi, i found what i believe to be this lymph node swollen about six months ago. My pa said it was a cysts. But a recent dermotologist visit says its not. I am very anxious also and am going to make an apointment with my md, but wondering what you learned? Thanks.

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