Second cancer from CLL???

[dcfrey]

Hi. My name is Dianne and have had CLL for about 5 years. Thanks God no treatment needed yet. Unfortunately I also hace CLL in my linguial tonsils and just went for a check up yesterday to see how they are doing. Well I will be going for a biopsy on Monday as my doctor wants to confirm it is just the CLL that is causing a very swollen right side of my tonsil. Hoping it is not a squamous cell that has developed. Little scared as I know there is always a possibility of a second cancer if you have CLL. Has anyone run into this problem? Thanks and wishing everyone well.

[AussieNeil Partner Administrator]

Tonsils are largely lymphoid tissue, so it is very unlikely that your swollen tonsil is due to anything other than CLL infiltration. Your doctor is just being thorough.

Neil

[PaulaS Volunteer]

Hi Dianne,

I see this is your first post, so welcome to the group!

Sorry to hear about your swollen tonsils. AdrianUK had a similar problem recently, so you might find his post helpful, and the responses to him that give some further links.

healthunlocked.com/cllsuppo...

We all tend to think of the worst scenarios when we get new symptoms, but as Neil has just said, it's most likely to be just CLL enlarging your tonsil and nothing more serious. But it's good that your doctor is getting it checked out.

wishing you all the best for the biopsy on Monday.

Paula

[AdrianUK in reply to PaulaS]

Hi, tonsils can grow with CLL. I’ve had both normal tonsils grow and now lingual. Had a tonsillectomy in November and will be having a lingual tonsillectomy next Thursday.

[PaulaS Volunteer in reply to AdrianUK]

I guess you're not needing treatment for any other aspects of your CLL, Adrian? If you were, then I'd assume your swollen tonsils would shrink when you started treatment, like other lymph nodes do, and you wouldn't need surgery to remove them. Did you have a biopsy of the tonsils at any stage, like Dianne dcfrey will have?

I've often wondered why I haven't heard of swollen lymph glands (other than tonsils) being removed surgically when they are causing problems. That would seem to be a good idea, especially if the person isn't suffering other symptoms from their CLL. I expect there are some good reasons though. Maybe other glands have greater uses than tonsils? Or maybe they are just harder to remove?

Anyway, I wish you all the best, Adrian, as you have your tonsillectomy next week.

Paula

[AdrianUK in reply to PaulaS]

Hi Paula, my other lymph nodes aren’t really growing much fortunately. And my bloods are exciting to normal doctors but not haematologists! So no treatment for me just yet. The tonsils were looked at under the microscope after they were removed and showed CLL growth in there as you’d expect. The lingual tonsils will be biopsied and then reduced in size (much harder to fully remove) all in the same procedure but I don’t think anyone is expecting anything other than more CLL growth. As far as other lymph nodes go what I read sometime was that if you remove them they just grow back. But also I guess if at least one mode is becoming problematic then the chances are high others are or the blood levels are also rising. So that’s probably why they treat. Mind you I did hear of someone who was going to have a groin node treated with the so called proton knife. Which is really a very precise form of radiotherapy (which I believe is also sometimes used)

And yes, from what I hear tonsils do shrink in response to treatment like other nodes. But I heard of one lady who needed both her tonsils and linguals out in the first year of diagnosis with CLL but hasn’t had chemo for the subsequent 20 years. So personally I wouldn’t want treatment if it was only my tonsils growing.

[PaulaS Volunteer in reply to AdrianUK]

Thanks for your reply, Adrian. It's interesting to hear of different ways CLL affects people and how problems are dealt with.

I can see that when it's only your tonsils that are enlarging. there's no need for treatment that will impact all of your body.

A few years ago it was only my spleen that was causing problems (massive enlargement), and the rest of me was OK. My haematologist mentioned the option of shrinking the spleen with radiation, but that had its disadvantages and I didn't choose that option. I don't think that's done much now, but it was an interesting idea.

[AdrianUK in reply to PaulaS]

Interesting, I’ve heard of splenectomy being done too. Not sure if that’s a current thing or not.

[cllmom]

Dianne I just had biopsy of right tonsil on the 20th and am waiting for results. Doctor said its either CLL or squamous cell. I was wondering what your outcome was ? I hope everything is going well for you.