Found "lumps" in my neck :(

Hey all~

I found them Monday night and have been debating posting.  I have my 3rd iron infusion on Fri and I will see a NP after that b/c my dr's schedule is full.  I found them on my supraclavicular lymph node, or the lymp node that is located at the base of your neck on the upper part of the hollow above your clavicle (or, at least now that I'm thin, it's hollow!)  There's a mass of 3 separate nodules that, I think, are stuck together in a triangular formation - they roll all together & can't be moved much separately.  The largest one is about 1" (or 2.5 cm) & the other two are smaller than that one - probably a 1/3 - 1/2" and maybe 1/4 - 1/3".  There's a second set of lumps that are also right next to each other going up my neck, but very close to the other set.  These are both pretty small, maybe 1/4" each. 

Signs it's not due to an infection - the supraclavicular nodules is not typically swollen, the ones behind your jaw line/ underneath your ears and the ones underneath your jaw more towards the midline of the body are the nodes typically swollen from an infection.  I'm not sick/ no symptoms of typical cold.  The big indication that it's not an infection is that the supraclavicular node on the other side of my neck has no bumps at all, it's just fine.

I did have 3 metabolites measured in a 24 hr urine sample that would be elevated by certain types of cancer, which were all normal.  Cancer of the lymph nodes (Hodgkin's lymphoma) is not measured by any of these.  All of my autoimmune tests came back normal

Recall the ESR from my last post - erythrocyte sedimentation rate.  Apparently this is very closely associated with Hodgkin's lymphoma, it is actually used as one of the diagnostic markers to assess response to treatment.  Normal is 0 - 20.  Mine was 95.

After finding the lumps and reading more on Hodgkin's lymphoma, I saw that fever was one of the symptoms and checked my temp Monday night using two different thermometers (night I found the masses).  One read 99.4 and one read 100.  I have typically "run low" and am usually 97.5 - 98.  The next morning/ yesterday, it was fine.  Took it again when I got home last night, it was 99.4 on the thermometer that had previously read 100.  The other thermometer is set on celsius & I didn't bother with it.  This morning, it was 98.6  Seems weird to me that it should fluctuate like that (& I'm not taking tylenol or ibuprofren, etc).  I don't feel any differently than normal, just tired.

My liver is almost certainly enlarged, that's why it's sore on my right side & why the CT scan of my abdomen was done this past Fri.  I also got a chest xray.

Other symptoms - exercise-induced fatigue, nightsweats, anemia, fatigue in general, shortness of breath in general.  I have all of those.

So!  I know doctors don't encourage people to read about their symptoms online b/c there really are a lot of symptoms that overlap with various disorders.  But, mine all fit just this one & I think having found those masses practically "seals the deal".  My WBC count has been mildly elevated all 3 times when it was assessed across 6 wks, all the while I never felt sick like I had "come down with something".  All autoimmune disorders associated with my symptoms have been ruled out.  The iron infusions have still not given me a lick more of energy, although it only has been 1 week from the first treatment & I received the second infusion yesterday.

I am keeping in mind that nothing is "set in stone" until I get a biopsy, which I would certainly think they would order . . . & you know I would argue for, but I'm not too worried about them not ordering it - how could they argue against it?  The hematologist argued with me about my anemia being due to WLS, despite my labs indicating it was due to an underlying chronic condition.  I don't see how anyone could possibly argue that my WLS caused the masses in my neck &, given my labs & symptoms (it ALL fits), I think it would be unethical for them not to biopsy it.

Bright side?  Hodgkins lymphoma is one of the cancers with the highest degree of successful treatment at all stages.  Keeping my chin up!

I hope you find some answers.

Any reason why you think this is Hodgkin's lymphoma instead of a non-Hodgkin's lymphoma?

Please don't hesitate to post, I have been thinking about you and personally appreciate the updates on how you are doing.

From what I've learned, the difference is that the tumor is located right on a lymph node with Hodgkin's, whereas you can have a tumor in other organs (particularly your spleen and liver) that is a lymphoma-based tumor & not have any tumors on a lymph node & that's designated as non-Hodgkin's.  I believe the difference is because a lymphoma-based tumor really just means that it is an abnormal cell growth that arises within the lymph system.  The lymph system circulates your immunities & WBC and the "hub" of it is in your spleen.  Your spleen filters out the lymph fluid for any foreign substances that your body has found, attached to, & removed from some other site in your body (via macrophages).

Hey Lisey, I am afraid I don't have anything to add but I just wanted to say that you have a great proactive and positive attitude and I'm rooting for ya sweetie.

Yorkie xx

Thank you!!

Lisey, as strange as this may sound, I'm sort of glad you found the enlarged lymph nodes as they may finally lead to a definite diagnosis. Both Hodgkins and non-Hodgkins lymphoma are very treatable, and there are surely other potential diagnoses as well. But you're right, there is no way to establish a definite diagnosis without a tissue biopsy.
     There are specific cells they need to look for, as well as the architecture of the lymph node (don't ask!) so a needle biopsy will not be sufficient, IMHO. A general surgeon or head and neck surgeon (formerly known as ENT) should be your next referral.

Larra

Thanks for the info, Larra.  I agree that it does sound strange, but there's definitely a part of me that feels the same way.  Once I know what's wrong, then a plan can be formed & a treatment started.  It's like I feel that I will be more in control at that point . . . or, at least, that's how I feel now!

Do you agree that given my symptoms & labs, and now the masses, that it would be unethical for them not to order a biopsy?  That's actually my biggest fear right now.  I actually don't even need a referral for my insurance, but I would think they would have a better idea of who is a good surgeon to contact than my randomly picking one.

I really don't think you'll have trouble getting a tissue biopsy, but if you do, demand a second opinion, or do whatever you need to do to get this done. And as already pointed out, when you are considering any form of lymphoma, a needle biopsy is not sufficient. They don't necessarily need to remove an entire lymph node, but they do need a piece of tissue (not true for every potential diagnosis, but true for lymphoma).
      I don't think this is one of those lumps people discover after losing a lot of weight. Your weight has been stable for awhile now, and then these lumps show up, and in just the right place to be enlarged lymph nodes. And all the other symptoms as well...something is going on.
      If this really is lymphoma, you will need a CT scan of chest and abdomen/pelvis for staging purposes and to direct treatment. And keeping some palpable lymph nodes is actually an advantage, as they can be easily assessed to see if you are responding to treatment.

Larra

Thanks, Larra :)