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Basically for the past 6-7 months maybe longer I've had swollen lymph nodes in my neck probably 5 or 6 of them from under my jaw to collar bone on the left side. I am worried about them. Have seen the doctor on a couple of occasions now and had 2 normal blood tests my last visit was last week and told him my main worry is Lymphoma, he said that'd be bad luck and told me to stop smoking, if I was worried about this disease. He said he wouldn't refer me for a biopsy as what if it was clear then more lymph nodes pop up can't send me for a biopsy for everyone. I am a 23 year old female and I know lymphoma is more uncommon in my age group doesn't mean it isn't a possibility, I also suffer from fatigue for months now sometimes it's so bad. All he said about that was oh take some vitamins. That can be a Cause for tiredness. I just don't seem to be getting anywhere with ANY doctors they just seem to back each other up saying viral infection that's causing it.. that keeps coming back. But make no effort to investigate it. The fatigue is just constantly making me feel rubbish.. also suffering horrible headaches now and again and like aches in hips and shoulders and slight chest pain now and again (not sure if its related) I've just had enough. Feeling like this since January. Obv it might not even be lymphoma but I am worried it. I know lymphoma doesn't show up on bloods either which I pointed out to the doctors when they said they were normal which they didn't comment on.

I have a question to those who've been diagnosed with this disease how big were you lymph nodes?? Did they grow, if so how big and over what period of time?? The doctors have said mine aren't overly big ranging from pea, bean to small marble sized. Saying that they would have grown bigger than this if it was Lymphoma.

I Thank you in advance for any reply.

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12 Replies

  • Posted

    Demand they remove a lymph Node and only have it sent to pathologist at MD Anderson Cancer Center. I spent almost 3 yrs with lymph node issues plus other unusual health issues then finally they sent it to MD Anderson in TX and a month later I got a diagnosis of (Peripheral Angioimmunoblastic T-cell Lymphoma ) Which is very rare aggressive and hard to diagnose Cancer. It was already Stage 4 by the time they got it diagnosed. SO I SAY DON'T HESITATE FIGHT FOR YOUR RIGHT TO KNOW and Start at the TOP or they'll drag you through the trenches until it's to late Luke they did me!!!!

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  • Posted

    Hello Emma

    You have a right to be worried and you have a right to see a haemotologist who will give you many more blood tests than your dismissive and ignorant doctor can be bothered with.

    I have a post under "non hodgkins lymphoma" which describes my experience.

    You are very young Emma but you have genuine symptoms and deserve better attention. I'm sure you will feel better after you have seen a specialist.They do a very thorough job and I do hope it settles your mind.

     

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  • Posted

    Thank you both for your replies. I am phoning for another appointment in the morning with a new doctor. And asking for some kind of referal, or better yet a biopsy . I'm fed up with been dismissed. is that centre in the UK Vicki? I'm sorry to hear that you both have this disease my thoughts are with you.

    May I ask how many swollen lymph nodes you had? How big they were and did they grow over a period of time how long and how big too?

    Thank you again for your replies

    Emma.

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    • Posted

      Sorry Emma just seen your questions. Will try to answer them all.

      1. Center is in USA @ Anderson Texas

      2. I started I thought with 1 in front of ear it wasn't swollen bad I actually thought it was a under the skin pimple that just never got a head.....lol.....it never got larger then a kidney Bean.

      3. Within a week I had other small swollen node's in and around jaw and neck , when they did pet scan is when they told me all the lymph node's in my groin and internally in my stomach were also swollen but they found what they believe to be my actual 1st one in my armpit and you could barely feel it and turned out to be 1.9 inches and had started to adhere to my muscle.

      4. Their not sure when the one in my armpit started but I never knew it was there as it grew inward.

      Hope this will help you out and that I answered all your questions

      Vicki

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  • Posted

    Hello Emma,

    How many times do we have to hear about patients being fobbed off by the ppeople who we are supposed to respect and trust with our lives.... .

    your story is so close to mine.

    I had nodes on the side of the face and under my jawbone as well as near the collarbone. The we'reabout the size of a pea but the one near my ear grew to about the size of a peach seed.

    Unknown to me until I had a CT scan there were 2 other larger ones in my chest and upper abdomin.

    My bloods never showed anything out of the norm.

    What I would suggest that you do is to get a GOOD GP to refer you for a FNA (fine needle aspiration)

    ASAP. . that should give you a quicker result than waiting for a node excision..

    I wish you all the best and offer my support via this link.

    Good luck and remain positive.

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    • Posted

      Hello,

      I had 9 needle aspirations from different areas and they found nothing, also had 2 node's on right side of neck which showed nothing, then they took out a lymph

      node from my left arm pit which was 1.9 inches and had started to adhere to my muscle. They had sent all others to local pathologist but this time Dr decided to send them to MD Anderson Cancer Center in TX and it took a month but I have a very rare and agressive Cancer and was already in stage 4. I had 2 yrs of crazy symptoms before the swollen lymph node's. It's called (Peripheral Angioimmunoblastic T-cell Lymphoma with NK's) they said at the time only 1% of population in the world get this type Cancer. But they've been looking for almost 4 months and can't find anyone in USA with it right now and are expanding the search elsewhere now. There's no one that has ever lived through it, they are try to by me the most anyone's ever lived 2 yrs but there's a 70% chance it will come back during that time. I'm doing pretty good so far and will have my 4th round of Chemo on 7/20. I've looked every where trying to find some research hospitals that will follow my treatment while I'm alive and take blood, tissue, or anything else that might help after I'm dead and believe me or not due to research cost they don't want it. Research Dr here actually said to me it will take someone rich or famous in order for the research to happen. How sad is that???

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    • Posted

      Oh Vicki you poor thing. Such a low percentage world wide and negative responses within the States. Must be like waiting for a time bomb to count down.

      Has anybody suggested clinical trials? Maybe worth exploring this avenue, or Bone marrow transplantation. Even MabThera, if anyone over there knows about mono- colony antibody therapy. (I have had both for my Non-Hodgkin's Lymphoma)

      My Haemotologist at St Vincent's Hospital in Sydney Australia

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    • Posted

      Vicki its me again, sorry for the abrupt finish to my last reply a couple of hours ago. I hit the wrong button and before I knew , the message had gone. (Old fingers with arthritis).

      In the meantime I Googled your type of lymphoma and found heaps of contact points in USA. You have probably done this already. I see that the prognosis isn't all that flash, however there is an upcoming conference in Nov/Dec 2016 where I imagine representation from near and far will be un attendance.

      Perhaps you could offer yourself as a discussion topic if your medical team are prepared to forward your updated reports etc.

      I sincerely wish I could offer you more in support.

      Best wishes with whatever you elect to try and please keep us informed via this link.

      Regards,

      JohnEdna.

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    • Posted

      Oh Vicky, I don't know what to say to you except to agree with everything John Edna has said. The longer they can keep you going with chemotherapy the better, new discoveries and treatments are being discovered every day and who knows, they may find something for you. Your courage and your friends and family will keep you going and we are all here rooting for you x

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    • Posted

      Oh my I just spent over a So illhour composing a reply and it just disappeared Grrrrrrrr

      Soooo I'll rewrite my reply before the weekend is over as it's late and my meds are kicking in

      Thank you in advance for your understanding

      Vicki

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    • Posted

      Hi Vicki,

      I guess you had a meltdown of sorts, I was looking forward to your comment on my note to JoyKF53.   You have had me wondering.

      ?I do understand how things go when in the middle of threatening times...don't feel bad at all.   If you do get the time/inclination, please drop a note here to fill me in on what is happening in your world.

      I am an old guy with a good ear and am pleased to offer my support to all who have any mis-association with Mr "C".

      ?Until then, my best and warmest regards to you.

      JohnEdna

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  • Posted

    Oh dear Emma, you must have all sorts of things going through your head. Okay, I have been treated for Stage 1A Diffuse Large B Cell Lymphoma (DLBCL) so know a little bit about it. The lump that I found was behind my ear and was pea size. By the time diagnosis was made there were 3, the first one being the largest. You are right, any age can get Lymphoma although it's most common in older women. I had mine surgically removed, my doctor said this was more thorough than a fine needle aspiration. Either way, whatever the diagnosis, I will give you the same advice as I gave another young woman on this site.Go to your GP, be assertive! Demand a referral to a hospital. You could change doctors, you do not have to give a reason for doing this. If the GP refuses to give you a referral take yourself to your nearest A&E and present them with your symptoms! If you are still having problems Google how to get a medical referral, there is a Service for Patients who give Advice and Liaise with doctors on your behalf. I'm not allowed to give it to you on this site but use the words I've given you to look online. It's 4 letters! Whatever the outcome, whatever is wrong, it's treatable so please don't worry unduly - not knowing is the worst part. Keep in touch, you'll get there in the end x.

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