To fellow CLLers who reported a lump in the neck, a question:-
is it a lump like a small ball or a gentle mound like a little hill? (Getting quite poetic in my description)
Have a great day.
lump in neck: To fellow CLLers who reported a... - CLL Support
lump in neck
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Safta
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My lump is about 1 cm and the shape of a rugby ball. It's quite solid.
Safta in reply to
we should have a competition for the most eloquent description! That sounds about right to me!
If this lump is near the adams apple then i too have had a lump for quite a while.
No, mine is nearer the shoulder . I guess we each have our own lumps...
The lump on my neck is on my left hand side in line with my shoulder.
At the moment it is a small ball and is not too hard, at times it is larger and much harder to the touch.
Question: Does anyone notice any correlation between the size/hardness of any lumps with illness, ie fighting infection, and/or exercise ?
I've noticed that the lump has become smaller/softer recently, at the same time as It has been not too bad for me in the way of infections, plus my New Years resolution of healthier diet and being able to have a good ( Supine ) exercise routine ( uninterrupted by Owws! ) .. means that I have managed to lose 19lbs since Christmas.
I have SLL and my bumps and lumps wax and wane daily. You can set your watch by them. Armpit, neck, abdomen each no longer than 30 mins. No real discomfort.
Regards
zentangle
CllcanadaTop Poster CURE Hero
I had a lump the size of a peanut... a few weeks later it was a small banana... two days later after a punch needle biopsy, it was confirmed as a Richter's Transformation to diffuse large B cell lymphoma... treatment commenced immediately.
All lumps and bumps need to be investigated by your CLL specialist... as soon as possible.
They aren't likely anything to worry about... probably nodes...
but in my case it wasn't nodes... 5 to 10% of CLL patients will transform and the earlier you catch it the better... particlularly with SLL, if you are Trisomy 12, 17p, TP53 mutated etc. and have been treated.
Richter's syndrome
cancernetwork.com/oncology-...
~chris
Hi chris,
I'm not sure what you're suggesting here. My lumps come and go with daily regularity. They always have done since diagnosis. Many people on here report the same. It's a bit alarmist to suggest Richter's, isn't it?
Regards
zentangle
I don't consider it alarmist when someone suggests it is wise to check symptoms that could indicate we may have fallen into the unfortunate (not so) few that have lost against odds of 1 in 10 to 1 in 20 risk. Sadly that's our risk of developing Richters and something you want to get onto before it becomes too established, due to its aggressive nature.
Personally, I consider it astounding that so little attention is paid to something for which we face such a high level of risk! I guess the message should be "To be alert, but not alarmed" and to know your body well.
Neil
I'm not suggesting for a moment it is Richter's, nodes do wax and wain...
...but CLL patients should have odd lumps checked...
I simply offer my case as a cautionary tale...
Someone told me this very thing a number of years ago and I heeded their advice... I hope others do as well...
~chris
I appreciate everything that has been said on this subject. However, I was led to bbelieve that Richter's also makes you very ill. Is this not the case?
Regards
zentangle
Not in my case...I felt great... just finished 6 months of FR. Richter's is very complex and very poorly understood...
Usually there is a malase, and B symptoms, rapidly rising and high LDH levels... often 400-500...
Rapidly expanding nodes etc.... but again not in my case... which was 'extra nodal' outside the lymph system... just a lump like a soft tissue sacroma...
This is the VERY reason it can be so insidious... can show up anywhere, in the bowels, in the kidney, in the testicles, in the brain... a friend had a Richter's site under his tongue
The median survival is under a year...
Surprisingly, extra nodal Richter's is curable with RCHOP and massive radiotherapy... I'm just entering my 32nd month, post transformation and there isn't any sign...
but I'm certainly not out of the woods... by a long shot.
~chris
Hi chris,
I'm really glad to hear that you're doing so well. Your experience is invaluable to us. I was just surprised that you mentioned Richter's when I was just saying how my nodes go up and down. Perhaps you weren't replying to me.
Regards
zentangle
I understand... I was replying to the thread primarily... lumps and bumps no matter where they are , they need to be assessed...
But, a old familiar lymph node that increases rapidly in size can't be left unchecked either...
A Neil said... we need "To be alert, but not alarmed" and to know your body well.
Well stated and thanks for the info Chris. My node in my clavicle area and armpit are my constant unwanted reminder. I watch vigilantly and so goes my Doc which is much more important.
Jeff
Thanks Jeff
As CLL patients we often have years and years of...'see you in three months'... it was 14 years in my case...
I think we get complacent... absolute lymphocyte count (ALC) goes up a bit, platelets dropped a bit... feeling OK...see you in 3 months...
But as I have learned, things can turn on a dime. There are many who think Richter's only happpens after treatment, I see this all the time on social media... but it is untrue...
Studies at the Mayo found a 45/55 split pre and post treatment in Richter's patients, some transformed as early as two months post diagnosis...
So we need to be alert to changes in our bodies as Neil has recommended, don't wait for another 3 month checkup... get to your CLL doctor immediately... for a proper diagnosis.
I was simply amazed at how fast things can develop...almost took my breath away 
~chris
Almost literally took it away in your case. Your 14 years of W&W was a good run. I only got 18 months. I'm not complaining though because I can learn from and enjoy the fruits of your labor and all the lab rats out there. Now I'm one too.
Jeff
CllcanadaTop Poster CURE Hero
Jeff
CLLPAG is posting a survey, hopefully in the next few days, as another support group to the Zydelig (idelalisib) funding in Canada. We need your experiences, hope you will participate in the survey... as a Lab Rat you have my gratitude...
~chris
Chris (CLLCanada) is so right about being aware of new symptoms and monitoring ongoing ones. A quick check with your doctor is important. It's also important to know as much as you can about the specific nature of your CLL which can help you to spot potential problems. Building a strong relationship with your GP and consultant is key to all of this, as is fast acces to them for when things go wrong. Making assumtions can be a very dangerous game. I won't alarm you with all my details as CLL is so heterogenous and manifests itslef differently for everyone, but it is wise to seek advice, be cautious and listen to the experience of others even if it doesn't turn out to apply to you.
Best wishes and good luck everyone.
Tricia
at the point where my husband's counts increased to the point of shifting him from W&W to treatment, he had developed a lump on his neck, around the side, that grew to a fair size, a couple of cm on a side. it was biopsied etc, and judged to be yet another lymph node swollen with white cells. over the preceding year, he'd gotten a smaller one on his forehead that had also been biopsied and judged to be a harmless cyst. both were biopsied via orders by our GP, though with all results copied to his haematologist.
both subsided over the first few months on ibrutinib, as did his enlarged internal lymph nodes. this suggests that the forehead one was CLL related after all.
best regards to all
Perhaps 5 years before my stage IV SLL diagnosis, I had a lump on my thigh diagnosed by my GP as a harmless cyst. My haematologist subsequently informed me that it was a swollen lymph node - and asks me whether it has changed in size at check ups. It is possible that's where my SLL (which is now CLL) originated and radiation therapy of that original node would have cured me...
i find that quite interesting.
in our case, the forehead lump came up about 4 years after his CLL diagnosis, but in the year where the more marked rise in his counts was beginning.
interesting how people go through such different experiences and symptoms. Thank you all for sharing.
Bottom line is- when in doubt, ask your doctor!
Hi, I have 2 lumps on each side under my chin, I had a bad cold at Christmas time and they swelled alarmingly like golf balls. However, I didn't fancy spending Christmas Eve at the A & E department waiting for hours and having to say " I have a cold" even though in our case it can get serious and develop into Pneumonia.They went away, but I have small lumps at the side and back of my neck (in my hair), my collarbone and a large one on the side of my breast(which doesn't worry me as it isn't painful and stays the same size.Some lumps are like little marbles, some (when there is an infection) are like golf balls and the one on the side of my breast is like a small banana. So I have a variety of all shape and sizes - all my aliens are there growing and vanishing according to my health at that moment. I don't worry - what is the point? I watch carefully when they swell and I start to feel like I have flu. That was when my doctor said we may have to start chemo as they don't seem to be behaving well. Miraculously, a week later the swelling went down and I felt better, so I am watching again.We have to manage as best we can !!!
Sounds just like me. One under my armpit: size of a small orange in the morning; grape in the evening, abdominal one on right side irritates me for 30 mins every day, neck ones up and down all day. Funny how we liken them to fruits, as does my haematologist!
Regards,
zentangle.
PaulaSVolunteer
It seems that for many people, the coming and going of various lumps and bumps is a very common thing, almost a daily thing.
My question is whether there is any way of telling which of these lumps might be dangerous (ie Richters), and which are more ordinary enlarged lymph nodes? Is it only a biopsy that can tell for sure? Or are there some other hints that might indicate the seriousness of the lumps.
I myself have never had any external enlarged nodes, (that I know of). So if I did suddenly notice one, I'd be straight to the doctor. But for those who get them on a regular basis, I can understand how they'd find it hard to know how seriously to take a new lump.
Paula
The only way to assess a probable Richter's is though a blood test, CTscan or more often a PET/CTcan... it will give a good indication...
However... Richter's needs to be confirmed by a biopsy, most likely it is diffuse large B cell lymphoma DLBCL , but it could also be Hodgkin's, HL or rarely PLL.
Richter's can be in the nodes ANY node or totally outside the nodes... it can appear in the spine, like my case, or in the brain, in which case it is refered to as Central nervous system lymphoma... CNS.
I have para aortic node involvement in CLL but no external indications, so a fast growing lump on my waist was a wake-up call...
Get it checked...
~chris
Thanks Chris. So I guess there's no easy way of assessing the significant of a new lump - just need to get them all checked.
You mention that you have para aortic node involvement... Without doing scans, is there any way of knowing if someone has this? And when someone does know they have it (like you), is there any way of knowing if it's getting worse, and maybe at risk of causing major problems?
Paula
I think doctors have a general idea by palpation, but the devil is in the CTscan... 'Every picture tells a story...'
Interestingly, my nodes this time are mediastinal... 
Mediastacial? Sorry for my ignorance, but is that another sort of para aortic or something else? And is it good or bad?
Oh.... your post has just changed... And it doesn't look like these new nodes are a good thing - at all... (Not that I ever thought they were "good" - just wondered how they differed from para aortic nodes).
None of it is good...
The para-aortic nodes are below the kidneys, these are above...
This may help a bit...
radiologyassistant.nl/en/p4...
Previous, it was nodes in the #6 cluster, now I have moved up in the world and the new ones are in fact #4R
Interesting diagram... Thank you. So #6 are para aortic, and #4R seem to be paratracheal? What difference does it make to your symptoms?
I have never had any node symptoms...
'Aye... there's the rub'
... as the Bard said...
Deep internal nodes can enlarge and threaten other organ functions, but it is insidious, rarely would show on any test...
O dear... So, which organs are in danger of being threatened by these insidious nodes? Would you get no warning signs that there was a problem?
CTscans will show all nodes... I amended my previous posts...
My ALC was close to doubling in 6 months, so a CTscan was warranted... it showed node/kidney involement and enlarged nodes around my heart...
I felt great with no indicators other than absolute lymphocyte count (ALC) rise...treatment was commenced... Could I have waited 6 months, probably, but why wait until there are other problems.
It really depends on the node location... some patients have more physical indications.
Like everything in CLL, it varies
I had a lump under my tongue some years back - it felt exactly like an egg in size and firmness - I could 'wiggle' it between my index finger and thumb (index finger in my mouth...thumb under my chin). Around that time (in the 1990s), X-Files, the American sci-fi tv series, was extremely popular and they ran an episode about a person who had a twin growing inside them. Freaky show...freaky episode. I would joke about my lump, saying it must 'be my twin'. I shouldn't have joked. It turned out to be a dermoid cyst that had to be removed by a cronio-facial surgeon. Apparently, I was supposed to be a twin, but the twin didn't develop. I was 28 when it was discovered. So now, i have CLL/SLL and many lumps. Whilst those lumps could indicate Richters at some point, I know for sure, that none of them are remotely related to an X-File episode. (Good grief...I can't believe I'm actually sharing this!!!!) But there's a point to this story... this is the reason I avoid giving any of my lumps cutsie, 'people' names like 'Gary' or 'Jeanie'. For me, I'll stick with the fruit/lump comparisons. It's more appropriate for me to call them 'grapes' and 'plums' ....and there's less chance of nightmares. (Still can't believe I shared this. You guys are marvelous on this site. Cheers, and hope you are all as well as possible. Jules from Oz x
Hi Jules,
Thanks for sharing - I don't feel so alone now. It is marvelous that we can share as I always call my lumps "my growing aliens" My friend in SA moans that I should go to the doctor each time. But, what people don't understand is that as long as I have my blood tests and checks and feel more or less the same there is no point in going each time there is a bit of swelling. When I have a cold they come up and then disappear so I have learnt to live and "watch and worry" Keep strong and keep up with that sense of humour!
Markella xx
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