Thought I had lymphoma - I don't!

Hi all

I recently got very worried that I had lymphoma and spent a lot of time stressing out and reading this forum and others on the web. I told myself that once I was sure I was OK I would post a message on these forums to try and help people in the same position I was in, and because so many people who are worried about having lymphoma never post again once they're all clear. So here is my little story!

At the start of September 2017 I got a nasty cold which turned into laryngitis and a chest infection. Had a week of antibiotics and got 'better' but it took me well over a month to stop feeling exhausted and the niggling cough never went away. At the end of November I got another virus, just a sore throat and hoarseness for a few days but again it utterly wiped me out and for much of the next month I had days where I felt really terrible and struggled with energy levels. And all the time there was this irritating little cough.

I started to panic when I noticed a lump in my neck on the left side kind of above my collarbone around the time I had the sore throat. I'd noticed 'puffiness' in this area since September but just thought it was fat! Now I started to wonder... I visited my Dr who thought maybe I had glandular fever or something else was going on and he was great and sent me for a chest XRay and blood tests. All came back clear except very slightly raised inflammatory markers.

I was still worried though - since visiting him I'd noticed two more larger lumps in the same sort of area of my neck. My anxiety was extra as my sister had had Hodgkin's Lymphoma years ago which was discovered by a neck lump and I knew this could raise my chances of having it. He understood my concerns and arranged an ultrasound. Christmas was coming however and it would be at least a month before I could have the scan.

The lumps didn't go away, I didn't feel any better, and prodding the lumps and googling my symptoms started to become a bit of an obsession. Added to this I started to have mild night sweats a couple of times a week. Great! My partner became equally worried and we started actually putting plans on hold in case I was diagnosed and had to have chemo. So we decided to pay for a private scan to put our minds at rest. The private hospital wouldn't do a CT scan for just my neck (we wanted this as I'd read it was more reliable than ultrasound) so we went ahead with an ultrasound which I managed to get a couple of weeks quicker than the NHS one. For info for people who are wondering this cost about £285 and we claimed 75% of the cost back on our private health insurance, so it wasn't too much to pay in the end for some peace of mind.

At the scan I saw the very senior radiologist looking at the screen and taking screengrabs and wondered what he was seeing. At the end of the scan I asked him and he said "You're absolutely fine. There are several reactive nodes but nothing that shows any signs of Hodgkin's or any other malignancy and as you've got a thin neck they're easier to feel. You've got nothing to worry about."

It felt like a weight off, I was so relieved. However, that night I had the worst night sweat yet and my partner and I woke feeling very deflated. I also couldn't stop wondering 'what exactly are these nodes reacting to?'. So I spoke to my Dr again, who was a little surprised I had gone private, but talked it all through with me. Essentially he told me to stop worrying, there was nothing of any concern. If it would put my mind at rest he would arrange some more blood tests to double check the inflammatory markers and everything else.

So here I am a week or so later - the blood test is tomorrow and I don't even feel like there is much point going! Since the private ultrasound I have tried to make some changes to improve my health. I'm a fairly healthy person but was obviously struggling to fight off those viruses in autumn/winter so decided my immune system must need a boost.

I've started taking multivitamins and echinacea, exercising more, eating better and drinking less alcohol. Crucially, I've also started taking antihistamines as one of the other things that popped up in my endless Google searches was allergies. I didn't think that could be it but it seems that perhaps it was a factor as my lumps have finally started to get smaller and the never ending cough has cleared up.

To do a little summary for anyone in my position, the things that I think have helped me to feel better are:

1. Distraction - the Christmas break spending time with friends and family stopped me focusing on my health so much. The brain is SO significant in all this and I don't think my anxiety was doing me any good at all.
2. The ultrasound - despite the fear the morning after the bad night sweat, overall the ultrasound really helped to settle my mind and I would certainly consider paying privately again in the same situation.
3. Antihistamines - obviously I'm not a medical professional but I would suggest that anyone struggling with raised nodes and an irritating cough or nose/throat symptoms should give this a whirl - the positive effects on my symptoms have been obvious within a week and I wish I had thought to try it sooner, if my mind hadn't been so clouded by thoughts of lymphoma!!

I'm not sure about the night sweats but they could be anxiety, hormones or even the temperature of my bedroom - either way I'm no longer worried that they are a 'b symptom' of lymphoma!

I hope this helps and good luck to everyone going through what I went through, I hope you get some peace of mind soon.

Anne

  • Great news Anne.. and yes we all love hearing when someone's diagnosis turns out good ... we all want good news stories too ... it gives hope to others starting on those scary tests and even scarier results .. so you go on and enjoy the rest of your time ... know who supported you, they may need you in the future ... live, love, laugh and make the most of it all ... Chrissie xx 

  • Dear Anne, I just wanted to say thank you for this post. I am currently suffering from extreme anxiety regarding upcoming tests. It is so reassuring to read this after seeing some cases disappear from these forums. Thank you for taking the time to write this- it is helping me feel more optimistic.
  • Hi Anne

    I know that you posted this a while ago but just wanted to say thank you for your post. 

    I have had multiple swollen lymph nodes in my neck and groin for about 8 months now and reoccurring infections (mainly UTIs and sinusitis) and just can’t shake the feeling that I have lymphoma. I’ve had blood tests and they’ve all come back clear apart from slightly raised white blood cells and had an ultrasound of my liver, pancreas and bladder a few months ago which was fine. But the lymph nodes still haven’t gone down. Over the last 4 months I have lost a substantial amount of weight (gone from a size 12 to a 6!) 

    I am due to have a biopsy and am waiting for the referral to come through. I had an X-ray today on my chest. I’m really hoping that the results come back clear but I’m worried that I still won’t be able to shake the worry that it is lymphoma but just keeps going undiagnosed. 

    Your post has given me something to think about and sometimes these things just don’t have an explanation. 

    I will remain positive for now :) 

     

    Olivia 

  • Hi Anne 

     

    Thank you for your post - it is reassuring! 

    I have been having night sweats on and off for the past 4 months.  I had them for 4 weeks, then went away then came back for 2 weeks then went away and now I have had spells of them on and off.

    I had 3 swollen lymph nodes in my neck, which I can feel

    really easily.  I paid for a private ultrasound scan who said  the lymph nodes look ultrasoundly normal.  

     

    I have had lots of blood tests which have all come back normal.

     

    I have come off my contraceptive pill in case it’s hormonal but still getting the night sweats.

     

    Its horrible waking up freezing but soaking with sweat.

    I am not really sure where I can go from here! Recording all that I eat and drink and planning to go back to the GP.

  • Hi anne

     

    Thank you for posting this it has given me abit of home.

    I am currently going for blood tests today and scans tomorrow. Mine started with a swollen node under my arm which was causing pins needles. The lump under my arm has now gone but I now how one Infront of my left ear it's hard and doesn't move. I've been itchy constantly, barely eating as I feel full, my chest feels like someone is sitting on it constsntly, tired all the time. There is alot of cancer in my family so I am petrified it's going to come back with something wrong. 

    I'm not looking forward to Christmas this year at all I just want to get the results back.

    Any feedback or advise will be really appreciated 

     

    Hayley 

  • Hello everyone 

    my story what still make me so so down i have swallen lymph gland on left side of my neck from April was bigger but gone down to pea size still there many dr consultation them said he will be there all time he not will be back to normal size, ok but my last few blood test come back with slightly elevated wbc, hematologis was looking for the blood and he said about the reason of my wbc is cousing of smoking nothing hematological problem , but im still worry so worry i was ask dr for a scan and he said with that small lymph gland no one accept scan, i have only Xray what resoult come back all clear nothing there but im worry, i not have no symptoms i feel ok from april nothing change i feel the same only this gland worry me he bot go bigger still small 

    please can someone say about have the same 

    ps. I google a lots what make me anexiety level so high everyone said dont look on internet but i cant stop 

  • My son was referred to hospital when his glands were very large in his neck but not at all painful. He had headaches, some night sweats, and a little fatigue.

     

    Following chest x-ray, full bloods, ultrasound on neck and tummy, he has been diagnosed with a virus - glandular fever, also known as Mono or EBV. ( He didn't have a sore throat, temperature or fever). Viruses can present in different ways and may take time to clear.

     

    It is always wise to be cautious but try not to fret. The symptoms can be similar but may not mean you have cancer.  

     

  • Thank you. Thank you. This allows me to wait out the week before I have my tests, without feeling locked up in negative thoughts. I too went for private healthcare after my GP told me to wait three weeks; she would then refer me for an ultrasound with a waiting list of at least six weeks. I have a hard, 3 cms node in my neck, just below my jaw. I’m sixty six and the consultant seemed to be preparing me for a bad outcome. So here I am, feeling that this is not real.  

  • Can I just say I'm so happy that you've wrote this post as I am a 19 year old healthy girl who has a swollen lymph node on my left hand side of my neck and was constantly reading up giving myself anxiety day in day out on this site but also is good to spread awareness , my gp also said nothing worrying got full blood count done which came back Normal and am currently waiting on appointment for ears nose and throat for ultrasound 

    wanted to share my own experience to let others aware that it isn't always the worst case and not to keep googling eveything easier said than done I know !! But thank u for this post 

     Just to add I was unwell when the lymph node first became swollen was run down with cold no sore throat and even now still have this lump on left hand side is the same pee sized moves through fingers full blood count was normal just waiting on ultrasound but feeling less anxious due to this post and blood results :)

  • Hi [@Anne111]‍ . Thank you so much for your reassurance. I am that kind of person that is constantly looking for some answers online and worrying that my symptoms could be cancer. 
    I know it's been a while but wanted to ask how are you doing these days. Are the night sweats gone for good?