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Found a neck lump--awaiting FNA results

Gabe72
Posts: 3
Joined: Oct 2013

I'm a 41 year old dad.  Today is my son's 9th birthday... And I'm a wreck.  Trying to keep it together, but it's tough.  I found a lump in my neck a few weeks ago--a little deep, not easy to find.  Feels pretty firm--but not rock hard.  There's no telling how long it has been there.  PCP acted like it was probably nothing--told me to wait a few weeks.  I also recently passed a kidney stone, and I found out I have 4 more still in my left kidney--never have had any in my life.  After that, I had a 24 hour urine collection test, and I found out I have hypercalciuria (high urinary calcium)--so something is definitely off.

I waited one week and went to an ENT.  He said it's probably nothing--said the node was a little over 1 cm (he was wrong).  He put me on antibiotics and said come back in 2-3 weeks.  I went back in one and a half.  He scoped my nasopharynx--nothing found.  I had also had my dentist do an oral screening--nothing found.  The ENT said he thinks the node was the same size--and that I could wait or do the ultrasound guided FNA.  I chose the FNA--still awaiting results--but I found out it was a lymph node measuring 2.5 cm x 1.6 cm x 0.5 cm.  There are so many red flags: >2cm, age>40, ratio of node lxw <2, non-tender, firm, posterior cervical area.

So now I'm waiting, and it's just hard to get through the day.  My mother passed at 47 from colon cancer--never saw her grandchildren or her son get married.  I was in my early 20s when she wasted away.  It was a terrible time.  My dad's mother passed at 39 from breast cancer--before I was born.

I want to do everything I can to beat this if I get the bad news that I'm pretty sure I'm going to get.

Any advice on getting a good doctor?  I've been reading the Duke website (I'm in NC)--there are many doctors that treat multiple types of cancers--and some that are H&N only.  Of the H&N docs, some have published and have better credentials.  Is there any way I can have a say in the doctor I get? 

Despite this roller coaster of emotions, this site has given me some hope.  It's nice to know there are others out there to listen and help.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

You don't have cancer until they tell you that you have cancer....., so get that out of your head.

Well, actually first and foremost...WELCOME

But seriously, you have had several qualified MD's that feel it's nothing to worry about. More than likely it's a swollen or infected lymphnode doing what it's suppose to do...trap something that has flared it up.

I had a swollen lymphnode below by right ear, down on the neck first discovered when I was around 18... It never bothered me, and several MD's said just as I told you...

Now I did get STGIII Tonsil cancer and a lymphnode affected HPV+ eventually at 55 But I'm not sure that was the same lymhnode or not... (but as a side note, after all of my treatment (sixteen weeks, four types of chemo, and 35 days of rads...)). The lymphnode is no longer there, or at least not swollen that I can find.

It could be totally coincidental, or not, doesn't matter...

Anyways, like I said, more than likely you don't have cancer...

But, to answer a few questions...

You can always request other opinions..., choose the best MD that you can afford and are comfortable with. You have to have complete trust in your MD so you can channel everything you have for positive thinking and recovery during and after treatment.

Get it in your head right now, if you do have H&N cancer, it's very curable these days with great survivor rates. Not saying it's not tough, it's a brutal treatment..., but doable.

When I was first Dx, I too had visions of pale, frail, no hair persons that eventually just withered away and died..., that's not even close to the case...

Hang in there, tough it out until you get the FNA results and go from there...

Best,

John

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

Can always make things worse than they are.  that's the nature of the beast.  As John said, don't cross the cancer bridge unless and until you have to.  Despite the worries, you actually don't have a lot of red flags.  the kidney stones, for example, are an unrelated problem.  yes, may people form Calcium Oxalate stones, and the cause of that is idiopathic.  So that problem will play itself out over time, but isn't related to a cancer concern.  The family history, while sad, is not related in any fashion to H and N cancer.  So you need to put this in its proper place.

 

It is fine that you got an FNA, but the size of the node is actually a volumetric determination, so dont convince yourself that the node is high risk because it has one dimension that is 2cm.  On and on it goes.  Nothing I have said will take your worries away, but I'd like to subtract from them somewhat by pointing out that you haven't lost a battle yet.  In fact, you don't know whether you have a battle or not.....

So, please take a deep breath.  See what the FNA says.  And listen to whatever conversation ensues.  It is absolutely too early, IMO, to be looking aroud for a second opinion, when you don't yet have the first opinion.  Doing that will make you crazy. 

Reading what I just wrote, I want to make sure you don't feel I'm picking at you.  I'm not, I just think you should slow down and take all this one step at a time.

 

best to you

 

Pat

 

Gabe72
Posts: 3
Joined: Oct 2013

I appreciate the warm welcome.

Pat, I don't feel picked on.  In my brevity, I didn't go into all the details. SKIP THIS PARAGRAPH if you don't want a bunch of details :).  The ENT did say malignancy was not off the radar--and he spoke about SCC.  On the node itself, I have read up extensively on the subject--and >2 cm is not a great sign (especially when the ratio of length to width is under 2).  Many medical texts on the subject of lymphadenopathy refer to H&N meta and lymphoma for posterior cervical nodes that are chronic (lasting several weeks).  Reactive nodes (to infection) tend to be mobile and tender--mine is firm and non-tender.  All that said, there are still some chance it's reactive--or something unusual (cat scratch, sarcoidosis, etc.).  Kidney stones aren't unusual for most people.  However, in my case, I have never had any--and in this same timeframe, I have seen my serum Ca raise from 9.6 to 9.9 to 10.2 in 5 months--during which time I developed 5 stones.  My 24 hr urine collection shows high volume (polyuria)--causing me very high thirst lately, with high urine Ca (414), low specific gravity, urine cystine was virtually 0,  and high serum phosphorous (4.9).  PTH is 21, so not hyperparathyroidism.  Calcitriol is high normal (53.5).  SCC (and other cancers) can produce a PTH-related peptide (PTHrP) that can cause hypercalcemia, which causes high urine calcium.  Lymphoma and some granulomatous conditions (like sarcoidosis) can also increase production of calcitriol, which increases intestinal absorption of Ca.  Not sure exactly what is going on here--my stone condition being a paraneoplastic condition seems reasonable.  Also note, the 24 collection report states - "Extreme hypercalciuria.  Exclude hypercalcemia, sarcoidosis, hyperthyroidism and malignant neoplasm".

Back to my point, I'm going to try and stay positive--even though each day is a struggle.  I appreciate John's point that it is much more treatable these days.  I'm just kind of bummed at finding it at III N1 (best case).

Tracy Lynn, I'm closer to Raleigh--I'd be willing to travel, but I am reading about NCCN institutions.  Duke is the closest.  However, they are not as strong on ENT.  I may explore out of state treatment, but I have no idea how this all works with insurance.... so back to everyone's original point.  Chill out for now.  I'm just trying to hope for the best and prepare for the worst.  I was reading another thread somewhere, and one guy was saying many folks are so wrapped up in the roller coaster, they don't have time to sufficiently research the programs from which they are receiving treatment--and I'd like to avoid doing that.

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

I truly loved them.  My mom went through a local cancer center and she did not feel like they got to know her personally like I did.  I won't mention names as not to offend anyone :)

 

Here is some info on the Levines...an amazing, giving family and a wonderful cancer institute.  Top notch.  I hope you don't even need them, though!

 

http://www.carolinashealthcare.org/levine-cancer-institute

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

Respectfully, what you didn't read is that paraneoplastic syndrome is not related to SCC of the throat.  It is seen in certain other malignancies, but is essentially unheard of in our corner of the universe. Also, paraneoplastic syndrome leads to hypercalcemia, not just hypercalciuria. Your serum calcium level is normal.  Period.  These tests have normal limits for a reason, in part because there is fluctuation in lab results even off the same speciman.  The norms are typically derived from an arbitrary limit of, say +/- 2SD from the mean.  So you cannot make an issue of values that are still WNL, no matter what the apparent trend. Often, those of us with a bent toward academics tend to google our way into the corner when we are threatened.  This can lead to more discomfort than it is worth.  Peace and tranquility, brother.

 

Pat

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Gabe72,

A lump on the neck may not be your ticket to this game.  Do whatever you can to keep your mind at ease since “it is not cancer until they say it is cancer”.  Truthfully, others have recently walked through the H&N doors with similar symptoms as you and everything turned out fine, they did not have cancer.

If the need comes to fight, fight you will and win you will, but for now, relax and wait.

Matt

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

As previously stated, don't consider it cancer until it is diagnosed as such. That being said, you  need to pursue doctors with the expertise to find out what it is. In my case the local ENT could not find the cause so I went to M. D. Anderson Cancer Center in Houston. In just two days I had the answer. Unfortunately mine was tonsil cancer. The good news is that was eight years ago and I'm doing just fine.

I had minor day surgery to remove the growth in my neck and the pathology identified the cancer. Then I  had the tonsils out and 39 radiation treatments and three chemo rounds of Cisplatin.

I think a Head & Neck specialist is a great idea. They deal with it every day and will get your diagnosis quickly.

Best wishes and keep us posted on your progress.

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

Welcome to the H&N family!  First...it's not cancer until a doctors says so.  Take a deep breath and relax a minute :)  I am near Charlotte, NC and I can NOT say enough great things about Levine Cancer Institute.  They are amazing and have locations scattered throughout the area.  Amazing team of medical professionals who do NOT waste time and they give you all the help you need.  I'm 41, too, and was diagnosed this past February with a 4cm Mucoepidermoid Carcinoma tumor in my lower left jaw.  I had two major surgeries, radiation, two feeding tubes and the works!  I'm 4 months cancer free and doing very well.  You will find a lot of similar stories on here.  There are amazing doctors and medical advances if you have something that requires treatment.  I went to the main Levine Institute in downtown Charlotte and they put me with the absolute BEST surgeon they had.  He has people from around the country (and even other countries) come to see him.  I can give you more info if Charlotte is a convenient location for you.  Hang tough and wait on the results.  It's hard to wait...that was the worst part, but be as hopeful as you can in the meantime.  Attitude helps SO much!  You've found a great group of people here.  They can guide you through anything you may encounter.  Best wishes to you! 

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

I think John said it best, its not cancer until the doctor says it cancer. There are a lot of reasons that a nodes can swell, it is the body’s way of getting rid of something that will make you sick. I was only 45 when my first bout with cancer came and I made it, so even if it is cancer you are in the right place. On advice if the doctor does say it is cancer go to one of the major cancer centers for treatment not some small city oncologist.

On the kidney stones there is a vitamin called TheraLithXR that your Urologist can prescribe for you that helps to keep you from getting more. I was having kidney stone attacks for years until my Urologist told me to start taking them, have not had an attack in years now.

 

For now Welcome to NSC H&N,  hope and pray your test come back negative.

Hondo

wild willy's picture
wild willy
Posts: 31
Joined: Jun 2012

Gabe Babtist hosp. in Winston salem has a good cancer team. they did a good job for me. im almost 4yrs out now.

Gabe72
Posts: 3
Joined: Oct 2013

Just wanted to drop in here, because I needed some positive energy.  Reading this forum does help, because everyone is so warm and compassionate.  I've avoided posting, because my stress and fear are still of the unknown--since I still have no diagnosis.  There is this awkward place between dx and having found a swollen lymph node--scared and anxious--at the same time not wanting to intrude on the folks coping with what's become the reality of it.

As for me, I had an FNA, and the results were inconclusive.  The good news was my ENT ran into the radiologist that did the FNA and was told that the node had "benign characteristics"--the hilum was intact, which is a good sign.  So he said to wait 3 weeks and come back--his hope being it was reactive and would resolve with more time.  3 weeks have come and gone, and it's still there--total time 7 weeks (starting the clock when I noticed it--there's no telling how long total).

I have to go back Tuesday and see what's next.  I suspect another ultrasound (possibly FNA again).  Surgical biopsy seems also possble now.  I'm concerned about doing that because of where it is (in my limited research, I've read about concerns with seeding--not to mention there's a nerve there) and what they'll find.  Days seem to drag, and I'm touching my neck every few minutes, and I'm probably driving my wife crazy.  Trying hard to avoid the chasm of dispair and hopelessness--some days I do ok, and others I do not.  Hoping to have this disease over that disease--come on cat scratch disease or sarcoidosis (like I have any control).

What is strange is that I got dry mouth for 3 weeks, too.  It got progressively worse, so that I had to drink water constantly.  Even my dentist commented on my lack of saliva.  I went to my primary care doc, who ran some tests and did a chest X-ray and sent me on my way.  I was going to go have a diabetes insipidus test done (thinking my stone laden kidney was casuing it), and then the thirst finally resolved.  It was baffling, and I'm stil not sure what to make of it.

Anyway, Thanksgiving is coming up, so there's something to be happy about.  I love turkey day!

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Gabe,

Remember, we (H&N) still have our fingers crossed for your lump to be nothing.

I had a lump as my first clue, then a FNA, which showed signs of cancer and then surgery to confirm.  My ENT did a Jugular Vein dissection to remove the lymph node.   It was tricky, but I slipped him an extra 100 bucks to do me right (just kidding).  Seriously, if he could not safely remove it he would not and would let treatments take care of the lymph node.  My base of tongue was more obvious and the cancer was removed.

Point being is they are going to help you and if needed, they have a vast array of options and tools and all this checking and rechecking is to get it right.

This does not help the anxiety, but each of us went through varying lengths of uncertainty.  I felt my lump on 11-11-11 and was told it was cancer on 12-23-11.  All the time in-between I had hope for it to be nothing.

Enjoy your Thanksgiving and every day and whether the results require treatment or not you will take care of it and you will be alright.  Alright?

Best to you,

Matt

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

I'm sorry you are having to wait and wait and wait!  They found my tumor 12/18/12 and I had surgery on 3/6/13.  That time frame felt like YEARS!  There is no telling how long it had been there. For me waiting was the worst part, so I understand how frustrating and terrifying that is.  I had times where I felt like the doctors were doing NOTHING, but I promise they will take excellent care of you and IF needed, get a game plan in place.  I pray it's nothing.  I pray it's an easy fix and not any diagnosis.  Keep us posted on how things go tomorrow!  

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

....at least emotionally.....the hardest part of this whole thing.  I found the lump in my neck in Dec. 2011....took it to the Dr. in Jan. 2012.....and didn't have a dx until March.....I was a wreck!  Anxiety can dry out your mouth, and that's a fact. 

Many FNA's are inconclusive, so that's not unusual at all....getting it out, and letting them slice and dice it, will give a definate answer. 

Keeping you in my thoughts and praying that this will just be some benign thing that will pass.

p

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