Hey I'm a three year survivor from Multiple Myeloma. It is rare cancer, but even rarer for my age (diagnosed at 32) I did chemo then had an autologus stem cell transplant. June 2010.
MM is not considered cureable, only treatable, and though I have had a complete remission (no detectable traces in any bloodwork etc) I am always worried I am relapsing, since the dr.'s have pretty much drilled it in my head that I will relapse sooner then later.
Anyway, that is a whole other post
Question is I "found" a hard lump in my neck in January. I was suffering a lot of sinus infections so I was running my neck as my glands were swollen and acheing.
Then I felt this hard lump. It is rock hard, you can't move it or anyting, and it feels smooth, about the size of a quarter or larger as it is right at the bottom of my ear, and then goes under my jaw.
I am having a CT scan next week of my sinuses, and also my glands to check for infections (my transplant and the chemo left me slightly immune compromised)
I went to my family DR. last week because I kept feeling something caught in my throat. He felt the lump and suggested and ultrasound.
I have pointed it out to cancer Dr. but she said she could not feel it ans said it was nothing (was recently switched to a different dr. who I have no rapport with, she is difficult for me to communicate as she is here doing a fellowship from Asia)
Anyway, can someone please tell me the best way to image these neck lumps? I know lymphoma often presents this way. I don't think I have lymphoma, but am worried about Myeloma relapse. It is not uncommon for tumors to form in the head and neck area. Most myeloma stays in the bone marrow but about 15% of patients develop external tumors..
Hi, have you looked into "Extramedullary Plasmacytoma"?
Is your breathing okay?
Here's some good news: "Extramedullary plasmacytoma is a highly curable disease with progression-free survival ranging from 70% to 87% at 10 to 14 years using radiation therapy (with or without previous resection)"
It seems that imaging can be tricky - and so that doc you have seems like a problem...
In this one from 2006: http://bjr.birjournals.org/content/79/943/e25.full
"Pulmonary and nodal multiple myeloma mimicking lymphoma"
"EMP are uncommon and typically manifest as a solitary plasmacytoma. Solitary plasmacytomas occur most commonly in the upper respiratory tract  such as nasal cavities, paranasal sinuses and nasopharynx."
Which goes on to discuss another study which found: "The most common sites were lymph nodes in 10 (20.8%), the pleura in 8 (16.6%) and soft tissues in 6 (12.5%)"
So that covers both your sinus problems and the seemingly calcified lymph node - plus with MM you get the hypercalcemia so maybe that contributed to the calcification. (Rock hard nodes usually mean a calcified metastasis - but in your case you might have some more rare process going on.)
Note that the abstract says, "the radiological appearances mimicking lymphoma". The authors also discuss the need to differentiate from lymphoma and post-transplant lymphoproliferative disorder. So you need a good diagnostic approach.
I have read about Solitary Extramedullary Plasmacytoma, but in my case I have already been diagnosed (and treated) for Multiple Myeloma so it would be considered relapsed myeloma, or could be metastic myeloma. My understanding of why is is called multiple myeloma is because in full blown form you have many tumors of Myeloma in your bone marrow.
yes good point about the calcium, mine has been pretty normal, but myeloma does some weird things
For testing is CT or ultrasound one better then the other?
Which scan? I don't know the answer, and I'd bet that three doctors might give three different answers..
Maybe this: a sono of the node near the ear since that is most accessible for a possible biopsy. If the biopsy is warranted and turns out positive, then a PET/CT of the whole body, which also should evaluate the marrow.
You might think about canceling next weeks CT so as to avoid the radiation or else make sure it is configured to look for neoplasms and not infections.
Calcification? AFAIK, that can occur in any tissue that is dead/necrotic - so, no, not always cancer related.
Hah! so true about different doctors with different ideas.
I read your post and it got me me thinking about un neccessary testing.
Why go through with a procedure and add the extra radiation exposure if it is not going to show anything? Very good point.
I called the imaging department, and asked if they could tell me the what the doctor has ordered (instructions to the radiolosist). They clerk was able to look up my apointment and see that the dcotor has requested full head and neck. (not just sinus like I though)
So looks like the CT scan will cover all possible areas where anything could be hiding, I feel assured with that.
fingers crossed it is just a scarred node from my previous chemo / infections etc.
Will post an update after my follow up appointment next week.
Thanks for you insight, Nodes are not typically a Myeloma issue. If you ever have questions about blood work, then I'm more then happy to respond! MM patients are taught alot about reading blood work since that is how most of us are monitored, and we are given copies of labs to track stuff ourselves. I know many MM patients who create spreadsheets for that!
Thanks for the update and also for the offer on looking at the MM blood work. If someone comes along with any related questions, I'll be sure to let you know. They'll appreciate your insights.
I assume that your paraproteins are good now else you would have mentioned that. Spreadsheets, huh? Wow.
Btw, here's a free full text case-study of EMP nasopharynx that I stumbled on:
I had the CT scan, but when I talked to the tech before hand he said it would not really show the nodes since there was no contrast ordered.
The scan showed some patches of sinusitis, but that could be allergies, and a slightly deviated septum (which could explain why I "snore" now) but did not show the neck well.
Went to my family dr because the lump is still there and I'm getting twiggy pains now and then.
He had a student dr. there that day. She was able to feel the lump and move it a bit, so that confirmed the thoughts it is a lymph node. she said it was reassuring that she could move it slightly.
I had the ultra sound last week. Called the dr. today for the results. Reception told me they just received it by fax, but the Dr. is not in today. The Physician's Assistant is there so she would give to him so he could look over and I could come in this afternoon and see him about the results. Reception called me back to say P.A. wants my Dr. to see the results and I should come in and see the Dr. on Monday when he is back in the office.
In case anyone is following (hate when I read a thread that doesn't update with the outcomes... )
got the US results. confirmed it is a lymph node, measures 1.8 x 1.8 cm. but shows a fatty centre or something with normal margins
At this point the radiologist suggested either proceeding to FNB or to do a follow up ultrasounds in 2 months to look for changes.
My family dr. felt given my history of upper respiratory infections, and treatments etc. watch and wait and an repeat ultrasound is reasonable and I am ok with that as I'm becoming needle phobic with the contanst blood tests, and Iv's and all that which come along with Cancer. He said he is not worried so I should not worry.
The reason the reults were flagged at my Dr. office is the radiologist said my thyroid is not normal, and shows changes associated withthyroiditis (hashimotos). My dr. said we will keep an eye on it, as what happens is the thyroid can have this but function ok until it eventually burns out, at which case you start treatment with thyroid replacement.
I've suspected that I've had sub clinical underactive thyroid since my transplant (it's not that uncommon side effect from high dose chemo), but at this time it is not that above range so I have not persued treatment.
I will take a thyroid condition over metastic cancer any day!
saw a endocrinologist and have started thyroid replacement medication. Feeling pretty good on synthroid, realize I must have had more symptoms of thyroid disease then I though I did! lose some weight without trying which may be from the thyroid med or could be a "red flag".
Had an ultrasound follow up in December (yes way past two months!) and lymph node is still enlarged. Radiologist recommends FNA. My Family doctor agrees. Saw my ID transplant doctor and he felt the node and he asked that I follow up with him after the node is biopsied.
I'm going to see hematologist next week for my quarterly follow up, she has been in touch with my family doctor for copies of the ultrasounds and she has ordered a full CT scan (head and neck). So we will see. Still likely just a scarred node, but after almost a year need to get definite answers.
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