Found a lump 🤔

[Tinkataz]

Hi, new member here, just hoping for some general advice? I got my diagnosis 3 years ago as a result of unrelated blood tests, I have no symptoms. A few days ago I found a small lump on my neck, but I have no night sweats, no weight loss etc, so my GP has said I should go in for blood tests. She has emailed my haematologist to ask exactly what blood tests are needed, and we’re waiting to hear back. I’m trying not to worry but it’s difficult. Has anyone experienced similar circumstances? I don’t know if it’s just my bodies reaction to a wee infection, or could it be more serious. Thank you and stay safe 💜

[HopeME]

I think you and your GP are taking the correct action. Good work. Given your CLL diagnose finding a bump on your neck is not unexpected. I remember finding them on my neck while waiting to be diagnosed. It was a scary time for me so I empathize with your concern but I think you will find the swollen lymph node to be a typical symptom of the disease. There are lots of amazing treatments if/when you need them. I know it is easier said then done but don’t worry.

Best

Mark

[Tinkataz in reply to HopeME]

Thank you so much. So glad I found this forum, was starting to feel very isolated, poor choice of word during lock down ?? I have a wonderful partner, he does his best but can never really understand . Have had a nose through other chats about lumps, and it seems it doesn’t necessarily mean I’ll treatment anytime soon. Thank you and stay safe

[fapumpkin in reply to Tinkataz]

I am glad you have found this forum, I have found it particularly helpful during the shielding as you can talk to people in the same situation as yourself.

My Cll diagnosis was from a biopsy on an enlarged lymph node on my neck which I had noticed some 7 years prior when I was 35, and whilst on watch and wait for 9 years my bloods remained "normal" whilst the size of my lymph nodes ebbed and wained. Sometimes new ones became enlarged (had one by my collar bone) and they would diminish in size again once a cold etc had gone.

I was nervous about starting treatment and when I unintentionally lost a lot of weight, I was treated with Rituximab and Ibrutinib. I have been on Ibrutinib for nearly 4 years, and it has very little impact on daily life.

Hopefully you are getting enough vitamin D whilst shielding. Please take care and always feel welcome to ask the community if you have any concerns.

[Miggins60]

I had the same last year, and thought “this is it” but the small swelling went away after a couple of days and has not returned. I had a blood test a few days after that (normal schedule) and everything was fine. Hope you find you are OK. Mags

[ygtgo]

Hi Tinkataz

I could have written your post word for word.

I was diagnosed after a routine blood test and placed on W&W in 2006.

About three years later, I discovered a lump on my neck, I had no night sweats, no weight loss etc ....

I went in to see my Consultant, had my bloods checked ... His comment of " I see you've got a new found friend " and his bedside manner put me at ease.

Since 2009, my 'friend' and I are still pals ... it is sometimes soft, sometime more solid, but rarely annoying.

'We' are still on W&W ....

ygtgo

[Tinkataz]

Thank you! So happy I found this support site, was feeling incredibly stressed, but it seems like what I’m experiencing is not so usual, or much to worry about. Thank you for taking the time to answer

[cajunjeff]

Tinka, as others have written, we can have nodes pop up which can be related to your cll or to some other reason. If it is cll, a swollen node in and of itself is no indication treatment is near.

Time to treatment is most often driven by the type of cll you have. That is determined by what is called a FISH test. Some types of cll are more aggressive than others, some so indolent treatment is never needed.

Your profile where you write how fortunate you were to catch your cll early reveals a common misunderstanding virtually everyone of us had at diagnosis. Everything we grew up with knowing about cancer told us our survival chances depend upon early detection.

That's not the case with cll. Since we do not treat until our cll is in a later stage, crazy as it sounds, early detection can be more of a curse than a blessing.

You might not treat for another ten years, who knows? I think some of us would have been better off not knowing so we would have had extra years of not worrying.

Here is one way to think of it. Most likely you have had your cll for a number of years already. Nothing has changed except that you know. I think the best strategy after one establishes a relationship with a specialist and gets over the shock of their diagnosis, is to park their cll somewhere in their brain where one doesn't think about it and get on with life. I do think there are certain stages we have to go through to get to acceptance, but it may help to know most people get there.

I think doctors more and more see cll these days as a manageable illness for most of us as opposed to a terminal illness. I am treating for my cll now and I see my life as pretty normal, if anything I eat better and exercise more since my diagnosis. Good luck and welcome to the forum.

[Tinkataz]

Thank you for your response. I feel over the 3 years since my diagnosis I have pretty much parked the CLL to one side and got on with my life. I don’t call it being in denial because that’s not how I feel. I feel that, hopefully I have many years left, and I don’t want them to be coloured by worry of ‘when will I get ill’. This is why I am only now joining this forum. I am glad I know though, otherwise I wouldn’t know to self isolate. I work for a huge supermarket, so would still be at work, putting myself at risk. Happily, I’m being paid 100% of my wages for 12 weeks which is a huge relief. I would be very interested to find out which kind of CLL I have, so thank you for the information. And I definitely should follow your example and eat healthier and exercise more!

[cajunjeff in reply to Tinkataz]

Good point, it is good to know so you will be extra careful. I misunderstood and thought you had only been just diagnosed. I figure since you wrote about a "wee" infection you are in the UK, no one says "wee" where I live unless they are on a roller coaster ride.

I don't know in the UK if FISH tests are routine at diagnosis. I think they should be, but I understand the point of view it might not be essential to have such testing until treatment is indicated.

[Tinkataz in reply to cajunjeff]

Lol! Yeah I’m in Edinburgh, Scotland, sorry about that. That’s so funny, we say it all the time 🤣

[JigFettler Volunteer in reply to Tinkataz]

Welcome to the Forum!

Loads of info and stuff to get to grips with. Dont be overwhelmed, there is time to learn.

Do check out the pinned posts tho! Important stuff to know from outset.

Jig

[Tinkataz in reply to JigFettler]

Thank you so much will do. With all the best intentions in the world, the folk around me don’t really understand, so nice to talk to folk who do, and gets lots of info

[JigFettler Volunteer in reply to cajunjeff]

UK FISH at diagnosis, no. Due fluidity of CLL. Definitely before treatment.

In my case 3 x.

Jig

[Poodle2]

Hi Tinkataz, I was diagnosed last year in July. Had a similar issue quite recently. One of my nodes started getting bigger. My CLL specialist thought nothing of it in January but in March my local haematologist wanted to be sure it wasn't anything more sinister so I had an ultrasound biopsy done about a month ago. It was just my CLL although you can imagine how anxious I was - thanks for this forum - I got a lot of encouraging responses when I posted (see my previous posts). I don't like the lumps as they remind me of the disease and they are the first thing I see when I wash my face in the morning. I really hope they come and go ...I won't be complaining too much as it could be worse. Hope it's the same in your case - I read somewhere that in about 75% of the cases of lumps in CLL - it's just CLL causing it. And btw - some hospitals do FISH test even at diagnosis if you ask for it even here in the UK. I had it done and I know other members who had it done too.

[Alex830]

I actually got diagnosed with CLL because I went to the doctor for two swollen lymph nodes in my neck that didn’t go away. This was in October of last year and I have no other symptoms. My oncologist isn’t too worried about them. They never really go away but some days they are definitely more obvious than other days. They don’t bother me and they are not painful. My blood count has been pretty stable. Hopefully it is nothing to worry about.

[Tinkataz in reply to Alex830]

Thank you, I was at GP this morning to get bloods taken so fingers crossed. So glad I found this forum because I’ve received lots of support and reassurance that a lump doesn’t necessarily mean an escalation in the disease. Take care

[Altindal22]

Hi

I been diagnosed with CLL 15 years ago been on watch and wait , with regular blood test , I had lumps on my neck , groin, under arms , under my jaw , they have grown in size a little but my doctor doesn’t seem to be concern so I would worry to much , just have your regular checks and look after your health

Keep well .

[Tinkataz in reply to Altindal22]

Thank you so much. I was at GP this morning to get blood taken so fingers crossed. So glad a found this forum because I’ve received lots of reassurance that a lump appearing doesn’t necessarily mean that the disease has escalated. Take care

[JT67]

Hi Tinkataz, it sounds like you are in the same place I was about 4 years ago. I was diagnosed when I had no real symptoms, apart from a lump in my neck and unexplained fatigue. As my first and only child was born 2 days later I had no choice but to ignore any thoughts about what the diagnosis meant for me and I just carried on. I am now into my third month of treatment after a pretty hairy 6 months of my condition getting worse and worse. I have not been able to work since last October but the treatment is now working really well and I would be back at work if it weren't for the need to self isolate. I just wanted to share a couple of thoughts about my experience in case it helps. Your attitude is fantastic in that you are able to park your concerns over diagnosis. I also found this pretty easy and I still haven't looked into the science nor do I understand the details of my diagnosis. This works for me. The mistake I made though was to carry on as normal without looking at my life and identifying what caused me most stress and making some changes to eliminate this early on. I had a very stressful job and just kept on working at the same level. There were also some elements of my relationship that were causing me frustration and resentment and I addressed neither. Since my illness ramped up last year I have been seeing some alternative therapists and, although I do not hold with a lot they say, the one thing I do believe is that my CLL is a manifestation of some pent up stress/resentment and frustration that had been going on for years and I had not dealt with. Having had 6 months in bed with little else to do I now realise what the causes were and will take steps to change them. My "advice" is to try and identify any areas of stress or frustration in your life, even if they do not seem very significant to you at the moment and see how you can change them. The only other person I know who has CLL did this the moment he was diagnosed and has had 30 years without the need for any treatment. My second and last(!) experience I wanted to share was my fear of treatment. As I say I didn't look into the detail of my diagnosis or try to understand it and I had little anxiety about it other than thinking that, once the disease reached the stage where treatment was required, that was basically the end. I wish I had joined a group like this a long time ago to realise that it isn't. I let the doctors postpone my treatment until I was in a very bad way indeed and it has taken a long time for me to get back to "normal" as a result. What I found was that the treatments are amazing and relieve the symptoms of the swollen lymph nodes and internal organs very quickly indeed. I had just developed other side effects as a result of starting treatment late that have taken longer to improve. I was so afraid of what treatment might involve that I let matters run on rather than pushing for treatment sooner. I am now significantly improved after only 3 months though. I have been very lucky to get onto a trial and am on Ibrutinib, which is one of the easiest medications to take and I have had only very minimal side effects. There is nothing to be afraid of in terms of treatment in my experience. I have found it to be really positive and all the nurses have been amazing.

Sorry for the length of this reply. I have no medical insights to offer and am new to this group but there is a wealth of information here if you want it. I have never posted anything before but I just wanted to share the two things I would have changed since receiving diagnosis...fear of treatment and not reducing some of the things which caused stress and anxiety in my life. Stay well and happy. You are probably a long way from needing treatment if you ever do at all 😊.

[Tinkataz in reply to JT67]

Thank you so much for your response. I think that today, even mainstream medical world believes that stress has a negative effect on health, so thank you for your excellent advice. Conversely, I wonder, if stress can exacerbate illness, surely removing stressers from your life, and maybe relaxation, meditation, yoga, or even just positive thinking could have the opposite effect? Like you say I’m no doctor, but to me it seems logical. Obviously I don’t believe yoga can cure cancer, but I’m sure relaxation, exercise and positive thinking will not do you any harm, and can only improve your quality of life. I must admit I absolutely do need to improve my diet! No excuses, I know what I should be doing, and my meals are very healthy, but, it’s the sugary snacks between meals I’m guilty of. Honestly, it feels like an addiction. As for treatment, part of me hates the phrase wait and watch, or is it watch and wait?? Anyway, it feels a bit like there’s an axe waiting to drop on me. I think I need to get away from my way of thinking which has been, once I need treatment, that’s the beginning of the end. Jeez, that’s the first time I’ve actually put that into words. I should take my own advice and think positive 🙂 I’m just so happy I live in the UK, so won’t add a tonne of debt on top of everything! Again, thank you for your advice.

[lJln]

Hi Tinkataz

I was diagnosed with CLL in Feb & I’ve had lots of lumps appear mainly glands they go up & down all the time in various places it always worries me but I try to think positive & just see it that my body is more sensitive now where glands are concerned I’m currently being treated for water infection no obvious symptoms of UTI I had one gland up but had been suffering severe headaches for over a month I was worried my CLL was progressing or I had low ferritin again doc did bloods & white cells had doubled so doc gave antibiotics & a day later I had developed ‘ frequency’ symptom so water infection was suspected lab a few days later test came back positive UTI. My persisting raised glands along with raised white cells were the main reasons that I was initially referred to haematology I was tested specifically for CLL due to my health history I hope to stay on W&W for a long time like everyone else does! This is a great forum to find support & honest answers to our often scary questions. Take care.

[Tinkataz in reply to lJln]

Thank you so much. It’s funny you should mention UTI, because, as well as the lump on my neck, I have a urine infection, and have had a few over the last few months. What I find difficult is, what is down to the CLL, and what is just normal day to day ailments. For example, I’m terrible for not drinking enough fluids, so is that why I have a urine infection? Although, I have always been terrible at remembering to drink water, but the infections are new. Anyway, was at GP this morning to get blood taken, she said she will mark it as urgent so I might get results this afternoon, if not next week. Last winter, instead of my normal one cold a winter, I had a cold every month for 5 months, but then, so did lots of my colleagues at the supermarket I work at. So again, normal day to day or CLL? Had bloods taken then, they were stable, and GP said there’s some nasty viruses about this year. This was pre-Covid 19, which got to say, has added a whole new level of stress for us! Wish me luck with my results and stay safe and well.

[lJln in reply to Tinkataz]

Sounds similar to my story yes I too worry what is normal for CLL everyday but I think we all feel so differently interesting to find someone else suffering with UTI problems though my story started Jan 2019 I got pneumonia I just felt I wasn’t right for ages after that & in Aug later that year I started with UTI that was treated but I still ended up with kidney infection felt dreadful after that suffering chronic headaches nausea just felt dreadful everyday got to a point where I couldn’t cope with feeling so poorly anymore so I begged my GP to admit me to hosp or I was going to take myself to A&E that night, he did & I had bloods done my ferritin came back at 9.6 should be 40-200 no wonder I felt so unwell 1 hour later I was on a drip having an iron transfusion by 11pm that night my headache had gone & I got better slowly as iron levels fed through my organs after that I had chest infections & Tonsilitis over winter followed by 10 wks of feeling fine & completely normal then like I said chronic headaches started in march & now I have another UTI worse than last year as came back as having 2 nasty bugs but I don’t have any of the painful symptoms of UTI just frequency & feel a bit groggy & more tired. I’m thinking it could maybe be CLL related I have an appt in two wks with CLL consultant I am going to ask about it when he calls me but my GP says I’m probably just sensitive to picking up infections now with having CLL. I need further advice on how to prevent picking up UTI’s already drink gallons of water & other recommended preventative measures having a good GP who will prescribe antibiotics as soon as I say I feel like I’m going downhill again does help! I suppose time will tell with frequency of infections. As for Covid it made me put CLL to the back of my mind a bit & life is currently all about surviving this virus now & there I was thinking coming to terms with CLL diagnosis was my biggest hurdle this year! I hope you get over your UTI soon stay safe.

[Gary53]

Hi, read all of the replies and always learn something new. I can add that lumps aren't often bad. Apparently they go up and down even without CLL, we just notice them more than those other people, you know, those poor normal people without special care and attention from the NHS.

Had a really big one, a massive node on my neck, painful, which wouldn't go away. Also my spleen was up. Looking it up on the net, (a little knowledge can be dangerous) , thought the CLL had mutated into Hodgkin's disease, another leukaemia, more nasty that our good old CLL. I got the feeling the haematologist thought the same. Still kept my sense of humour and kept calm, it really does help. Think positive, and get back to believing we can live forever.

After a biopsy, the haematologist said, good news, it was a bacterial infection, not something else. He also said I was a peculiar patient, yes he also has a good sense of humour. He's been treating me for 17 years so he should know.

Before the hole in my neck could heal, I kept squeezing it like a boil, and drained it. Not recommended, I'm sure, but it worked for me! I'm still alive!

By the way, I was diagnosed 17 years ago, in an advanced stage of CLL and needed Chemo. Past two years been on Ibrutinib, and that doesn't knock you about much, not like the old chemotherapy.

By the time you need treatment they will probably have an even more specific, targeted drug to treat CLL, with feeble side effects.

Think positive, as CLL is vey treatable, and the treatment is getting better all the time.

Gary

[wizzard166]

Relax with the lump on your neck. I have three lumps that would pop out throughout my life if I was getting sick. That started when I was a teen ager with mononucleosis, and never went away. They are on the right side of my neck.

I was diagnosed with CLL in April 2018, and since then the lumps on the right side are always there, but get larger if I get sick too. Then about a year ago my wife and I were on a trip that passed through Abu Dhabi and Israel, and huge painful lumps came out when I got sick on the left side too. The ones on the right have never been painful. The ones on the left go down to almost to where I don't feel them, once I am over the sickness.

These are lymph nodes, and everyone has them. With our CLL our lymph nodes begin to grow all over our body. We don't feel the ones with our fingers in the abdomen and groin, etc, but they are there and swollen too. Its nothing other than a symptom of our illness.

I understand your doctor wanting blood work, to simply see if you show signs of infection, but any GP knows how to order a simple normal CBC. I'm a bit surprised the GP is going to ask the Hematologist which ones to order. Normally you would be seeing a Hematologist every six months in early stages of CLL, and then I guess every few months when things heat up. When you have a Hematologist that is following you with CLL, it likely would have been better just to call your Hematologist instead of the GP. In all likelihood the Hematologist would have simply said not to worry its nothing, or perhaps had you come in to probe around with their hands for a clinical evaluation. Lets face it if your GP needs to ask your Hematologist what to do, wouldnt it make things easier for you just to contact the Hematologist for CLL related things? Anyway you did the right thing in looking into it.

Carl

[JerrysGirl3]

Hi Tinkataz. I suddenly had three palpable nodes on the side of my neck exactly where my thyroid cancer was. Went to ENT and he said was not thyroid related. So I went to CLL doc and he said probably CLL related but not to worry because my numbers were good. So I have difficulty swallowing and it's extremely annoying but nothing can be done til they get bigger and then they'll put me on meds that will shrink them. I was diagnosed in Oct 2015. I'm on watch and wait.

[JerrysGirl3]

I see Mark below said it all lol. Both myself and my sister suddenly came down with nodes in our necks! My cll doc says they're not big enough to worry about. She's waiting to see her doc. We both also had thyroid cancer so endo says not related call cll doc lol