Hi everyone,
My last post was three weeks ago just after I had my tonsillectomy. And unfortunately today I got the results. It turns out my abnormal tonsils were full of cll cells. Or as my surgeon said loaded with cancer cells. Has anyone else here had the same experience or results? He recommended bringing my heamtology appointment closer than April.
Xx
I had not heard of cll in the tonsils so I googled it. If I am reading the article I am linking you to correctly, its an unusual but possible presentation with cll/sll.
If it were me I would probably copy the article and bring to my cll doctor and surgeon to see if the article is talking about the same presentation you had, so they can see its not unheard of if that's what is going on.
I don't see where there is anything else to do about it other than take the tonsils out. The way I read it cll cells usually go to our nodes but sometimes, for reasons they do not know, can settle in other places like our tonsils. I could be way off, I hope someone can explain to you what happened.
ncbi.nlm.nih.gov/pmc/articl...
Thank you for your quick response.
Hi there
It’s true I had rapidly growing tonsils that almost choked me to death and I had to have them removed as an emergency. They were growing so fast that the haematologist told me he thought it was a transformation it really wasn’t. It was just CLL.
If you were to remove any lymph node in your body it would be full of CLL cells even if it didn’t look enlarged. So that in itself is not a concern at all.
Tonsils are a specialised form of lymph nodes. And as I understand it if you have a throat infection lymphocytes including CLL cells will be naturally attracted to the tonsils and then once there will find it a nice place to grow. Adenoids and lingual tonsils (back of your tongue) are other places where they can grow.
The reason many doctors haven’t seen this in tonsils is twofold. One CLL is itself a rare disease. I know it doesn’t feel like it in here but it is!
Second Reason is that CLL is typically a disease of older people and the generation befor mine almost all had their tonsils removed as kids so it is less likely for CLL to grow there unless some tissue was left behind.
So in short it’s good they have removed the tonsils (hopefully you will snore less and in my case I was able to breath and swallow again!h
In my case I was treated about a year after the first tonsil operation (needed a lingual tonsil removal too when they started to grow as a precaution. The lingual tonsils can’t easily be fully removed so I’ve been warned they could be the first thing to grow if I get a relapse. My nodes as a whole didn’t really grow much till later (tho they were all active on PETCT)
So talk to your doctor and as long as the CLL cells are all that is in your tonsils this is not a big deal and I’m not even sure it’s a guarantee you will need treatment soon as I spoke to a lady once who had tonsillectomy’s and didn’t need CLL treatment for decades.
In some cases the tonsil growth will be a mixture of infection and CLL cells (or infection started it and the CLL cells continued after).
So as I say this is probably going to become a lot more common as more people get CLL who haven’t had their tonsils removed. So much so that I think examining the visible tonsils should be part of a check up. In truth GPs May be better at assessing tonsils than even CLL specialists however.
I wonder if we should do a case series and get it published. Of all of us who have had this issue? If anyone is interested in working with me on this it might be an interesting little project that may help others.
So in short
Don’t panic.
Make sure the histology has been carefully checked.
Think about lingual tonsils. I’ve been told if I feel a lump at the base of my tongue again or struggle to swallow or feel weird down there to go to A and E where an ENT doctor can look at my linguals. It’s possible to get lingual tonsilitis which I have had once post Chemo without the corresponding growth. (The lingual tonsils looked red and inflamed and angry but were not enlarged and after antibiotics this had resolved).
My SLL was diagnosed following a diagnostic tonsillectomy, I was told this was a rare presentation but the more I read on here makes me feel this is not the case! I’ve got ongoing ENT problems which no one seems to be able to say could be SLL related though I very much feel they are. I’d be interested in being involved in a case series if appropriate.
Has anyone looked at your lingual tonsils? What are your ongoing issues?
AdrianUK has experience of tonsil involvement and I’m sure will share it with you if he sees this link I’ve sent.
To be honest I’ve heard of this a fair bit. CLL cells seem to like the tonsils as a repository it seems.
Best wishes,
Newdawn
My tonsils and adenoids regrew (they were removed 65 years earlier) during my third progession and blocked my ears & sinuses.
-
In my earlier progressions I had minimal node involvement in my first progression, but huge nodes in my abdomen during my second. My third progression featured nodes at my clavicle and neck that were visible and palpable for the first time sincemy diagnosis in 2008
-
My CLL expert doctor said it was not unusual since he considers tonsils and adenoids to be part of the lymph system just like lymph nodes.
-
When I started treatment with Venetoclax they went back to normal size within 3 weeks.
.
From WebMD : webmd.com/oral-health/pictu...
Nov 14, 2017 - The tonsils (palatine tonsils) are a pair of soft tissue masses located at the rear of the throat (pharynx). Each tonsil is composed of tissue similar to lymph nodes, covered by pink mucosa (like on the adjacent mouth lining). ... The tonsils are part of the lymphatic system, which helps to fight infections.
-
webmd.com/oral-health/pictu...
May 18, 2019 - The adenoids are a mass of soft tissue behind the nasal cavity. Like lymph nodes, adenoids are part of the immune system and are made of the same type of tissue (lymphoid tissue). White blood cells circulate through the adenoids and other lymphoid tissue, reacting to foreign invaders in the body.
Len
Dear Suzuki,
I had CLL in my Tonsils and was very glad to finally get them removed in 2013 (from memory), before I had FCR treatment for the CLL starting end of 2014.
I think it's reasonably well known to get CLL in the tonsils, and if you need them removed provides a good biopsy opportunity.
Hope you are now feeling much better.
Wishing you well,
Ernest
i had a lipoma that was full of b-cells. your blood is cousing thru your body. many parts will pick up b cells like a sponge. it does not mean they themselves are cancerous,
Hi there, yes, I had a large lump that formed on my lingual tonsil. Luckily I had prompt surgery to remove it. The pathology showed CLL cells in the lingual tonsils. I have regular check ups with my ENT specialist to check that it has not returned. Wishing you all the best.
Indie.
See my post today re tonsils. Elizabeth.
Hello Suzuki1000
Makes sense, tonsils are lymph nodes, which is where a lot of our CLL ends up. Blessings.
About 3 years ago, my tonsils were swollen and they stayed that way for a year. I feel really stupid since my dad had CLL and that was one of his problems. His actually had rotted out. Mine was the first sign of my CLL. The hemo doc that I had at that time said that I should just get chemo and they would go back to normal for either 2 months or 2 years..So I went to a better doctor at the U of Minnesota specialist and he said 'get them out' It was so nice to breathe right again and my voice actually had changed while they were so swollen. Had tried antibiotics and prednisolone (other doctors) and the pred. helped very temporarily. Shortly after removal, my other glands took over the burden. Now on IB for past 6 1/2 months. My sister just told me a couple days ago that I was so brave when the tonsil thing went down..I said, I didn't think it was so bad. The pain medicine worked wonders!!
You can also have swelling of the foliate papillae which are situated on either side of the tongue in posterior part of the mouth. Very easy to traumatize the tongue when chewing if this occurs especially if you still have your 3rd molars. In my case after going on I&O the situation was quickly resolved.
Yes and my hematologists response was of course! You have cll. The cells will be everywhere. I’d still follow suggestion to see hematologist sooner than later.
Best to all! Debrah
Ps, j should clarify that my surgery was chest, not tonsils. Not sure that it would make a difference, but I’m not a doc.
"He recommended bringing my heamtology appointment closer than April."
If it were me I would be looking for an appointment tomorrow. Not to panic but, I sure would want to let him know what was going on.
Michael
A CLL specialist told me CLL csn present anywhere. He said he has one patient with CLL in his finger, and another in her ear.
- Bobby
Hi!!! SUZUKI1000, So Sorry, I noticed cancer cells are attracted to moist areas in body. My poor Dad developed lung cancer Mesothelioma he was an executive for commercial furniture and supervised the delivery, unfortunately they were installing harmful insulation later we realised .😢 I would pursue natural supplements and vitamins etc. Maybe Shark or mushroom extracts but only you can do what's best for you. I'm at stage 0 with CLL. I hope you feel better🤗🙋♀️your friend 8n Health🤗😇😷❤💪🙋♀️, Debbie.
Be glad they are now gone and that’s 1 less thing that cll had a hold on! Try and get back to liven the best you can and you live your life don’t let cll live it for you! As I say F-cll and I kick it’s ass each and everyday and I hope you can do the same good luck!!
I went to an ENT because of a lymph node on side of neck that would not go away. He ordered a ct with contrast . The results showed several tonsil stones he said at my follow up app.. He showed me the ct pictures and they were everywhere in my tonsils. He told me not to worry about lymph node because I had one on each side! My regular doctor ordered bloodwork to check for cancer and then I was sent to Onocology doctor. I was told bloodwork indicated CLL. So I was wondering, is this something like what happened to you ? I am wondering now if my tonsils are full of CLL and not tonsil stones!
New to the group and New to CLL
Life with CLL
New to CLL so confused 
CLL Covid Concerns
New to this world of CLL
