Little swollen gland on neck

[elm1]

I just had a phone appointment with my hematologist a few weeks ago. On watch and wait stage zero for the last two years. I noticed a small swollen gland on the back of my neck maybe a little larger than a pea. Is this normal? There’s nothing to do but sit around and worry. So. I am. Lol

[albie58]

Its normal. No need to worry but if it really bothers you give your hematologist a call. I have several swollen nodes about 2 cm. On my neck, under my arms and in my groin...those are smaller. I have had them for years and they have stayed the same size. Oh...and did I mention I have tiny ones under my jaw? I have been on W&W for 13 years with no treatment. So yes, CLL can leave you with nodes....its perfectly normal.

[elm1 in reply to albie58]

Thanks. I really appreciate your response. Xo

[Test_Tech in reply to albie58]

Hi Albie58, I would like to ask you and cujoe if you two know your FISH test results. I copied mine below. Are yours similar to mine?

Positive for deletion 13q14.3 (75% of cells)

Negative for the following: deletion of the ATM gene (11q22.3, trisomy 12, deletion 13q34 and deletion of the TP53 gene (17p13.1).

Thank You

Test_Tech

[albie58 in reply to Test_Tech]

Hi test_tech!! Yep! I'm 13q only..all others negative like yourself including cd38 and zap 70. I am also mutated. Everyone's experience or journey with CLL is different and unique to that person. Hopefully, you have many years of W&W. I'm sure I'll need treatment at some point down the line. My spleen is enlarged and platelets keep bouncing around, but the trend is going down. So, just a matter of time I guess unless things stabilize for a good while.

[Test_Tech in reply to albie58]

Thank you albie58, 13 years looks great to me at 70 years old.

Take Care

test_tech

[cujoe]

elm1, Congrats on stage zero + 2 years W&W.

I second albie58's reply. I started out 2006 with many palpable nodes spread about the neck & head. Docs like to say they "wax and wane". Also like albie58, I have never needed treatment and as of this year all those nodes have dissipated.

Remembering my early years after diagnosis, it is difficult to not get concerned with every lab up/downtick and nodes that come and go. However, over time you should find that most (and hopefully all) of the spurious concerns are just CLL doing it's thing. Stay safe & Be Well - cujoe

[elm1 in reply to cujoe]

Thanks soooo much! You’re response is very helpful. Xo

[cujoe in reply to elm1]

Well, in all honesty, albie58 & I are not representative of the mainstream posters here. But you may turn out, like the two of us, to be in that fortunate group of CLL patients who never need treatment. (at least, so far.) It took me many years to realize that nearly all of my hand-wringing concerns never came to pass. In reality, other than the now-dissipated enlarged nodes, less than perfect lab results, and semi-annual oncologist appts, I would not know I even had CLL. You may travel a similar road, so try to not let CLL take over your life.

Most importantly, if you ever do need treatment, you have ever expanding options that are much more effective than those available 14 years ago. Keep thinking of the glass as more than half full & Be/Stay Well - cujoe

[elm1 in reply to cujoe]

Thanks sooo much. Xo

[Test_Tech in reply to cujoe]

Hi Cujoe, I would like to ask you and albie58 if you two know your FISH test results. I copied mine below. Are yours similar to mine?

Positive for deletion 13q14.3 (75% of cells)

Negative for the following: deletion of the ATM gene (11q22.3, trisomy 12, deletion 13q34 and deletion of the TP53 gene (17p13.1).

Thank You

Test_Tech

[elm1 in reply to Test_Tech]

All I know is that I’m 13q deletion. Does that help?

[Test_Tech in reply to elm1]

Thanks for the reply, I'm hoping I can go as long as you two without treatment.

test_tech

[elm1 in reply to Test_Tech]

I hope so too. I’m also mutated.

[Test_Tech in reply to elm1]

When were you initially diagnosed elm1?, I am wondering if the deletion is connected to how long you can go with being treated.

test_tech

[elm1 in reply to Test_Tech]

In August it will 2 years. I had an elevated white count and lymphocyte count for years. My primary care physician suggested I see a hematologist. She thought I must have had inflammation somewhere. I was shocked by the diagnosis. I must have had this for several years. So far I don’t have symptoms. I’m a regular exerciser and eat healthy. I’ll be 69 Sunday. I figure I’ll start worrying if and when something changes although I get nervous every 4 months when I go for my blood tests. How are you feeling!

[Test_Tech in reply to elm1]

I feel great now! I had been stuck in the house because of constant AFIB and the fact that the Ablation procedure I had scheduled was postponed due to Covid19. But I had the procedure on May 26th. I waited one week and couldn't wait to get out and start running and bike riding again, that's why I'm feeling great. We are about the same age, I turned 70 in December, I was diagnosed in March 2018.

Stay Well

test_tech

[elm1 in reply to Test_Tech]

You too! We’re CLL twins!

[cujoe in reply to Test_Tech]

Test_Tech,

Same; i.e., 13q14.3 deletion. (double in my case) percentage was 32 % at diagnosis in 2006 and 86% when retested in late 2016.

I also have PCa and was tested via the STRATA clinical trial for about 120 genetic defects common to cancers, but not specific to CLL or PCa. ATM & TP53 were included as were a number of other genetic defects that are often abnormal in CLL. Considering the extensive cancer (no other CLL) in the three most current generations in my family, I was astonished to find I had no defects. The genetic testing was done in 2017 and used tissue from my final prostate surgery done 3 years earlier.

Here is a somewhat dated 2014 research paper that discusses genetic abnormalities in CLL;

Genetic Abnormalities in Chronic Lymphocytic Leukemia: Where We Are and Where We Go

(Note the Figure 1 diagram that shows the location of most defects)

hindawi.com/journals/bmri/2...

Keep asking good questions and you will get good answers here at CLL Support. Lots of well-informed patients, care-givers, and great Admins here. Stay Strong & Be Well - Captain cujoe

[Test_Tech in reply to cujoe]

Thank You cujoe

[Ironj]

I noticed a pea size one as well it’s like only half is felt and the other half is deeper in. I’m not sure if it’s been there I’m almost thinking it’s been there for a very long time. I noticed it because my neck has been feeling stiff like I was sleeping the wrong way when I move it in any direction for the past month. I do have a neck injury but this is a different feeling that I’ve had from my neck injury. Do you have any neck discomfort?

Best wishes John.

[elm1 in reply to Ironj]

I have zero discomfort. I may have had it a while back and showed my doctor but I forgot. Lol. Or it’s a new one. Did you show yours to your doctor?

[Ironj in reply to elm1]

I go every 3 months to the oncologist and he’s never said anything and like you I am almost certain I’ve had it I just can’t be sure. But like I was saying it’s about the size of a pea but only half of it is popping out a little. I don’t have pain from that to touch my discomfort is a stiff neck in all direction.

[elm1]

I’d have the stiff neck checked out. That has to be annoying. I think we’re both fine on the little swollen gland. If your doc didn’t say anything it wasn’t anything to be concerned over. Glad we have this site for support!

[chuckh]

It has been normal for me over and over again. It was probably the very first visible sign that my white count was going up. On me. it was my parotid gland... which my understanding is a combination of a lymph node/salivary gland. Mine started out tiny and would slowly grow and grow. and then a combo of factors indicated it was time for my first treatment.... and with my very first treatment/chemo it went down.. along with the other less noticeable ones in my groin..... while sitting in the chemo chair. So yes... no scholar here but I think it is fairly common with CLL and other lymphomas.

Since that time it has come back several times.. only to go away again with subsequent treatments each time.. I think I am currently on #4 time... and treatment to begin in about a week if all goes as planned...

Best of luck to you... no worries...… Chuck