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enlarged right tonsil & swollen lymph node that's been there for months, maybe years...neck & throat wants to remove tonsil

mommysteph0891
Posts: 5
Joined: Jan 2012

hi,
my name is stephanie. i'm 31 years old. my doc noticed a swollen lymph node on the right side of my neck. didn't worry about it and says it's normal and to just watch it if it grows. i went back a few months later for other reasons...i'm always tired and wanted to see if maybe i was low on iron or something else. well he felt my lymph node and thought it may have gotten bigger. so he referred me to a throat, neck and ear specialist just for a 2nd opinion. btw he took blood tests and everything came out normal. well my appointment for the specialist was today. he noticed my right tonsil is also enlarged. told me not to be alarmed but said i needed to get a surgery to remove my right tonsil and get it tested for anything abnormal. now i'm scared. first of all...is this normal to do this w/out doing a biopsy first? i heard people w/ lumps on their throats get biopsy's by getting samples w/ a needle? i have no other symptoms other than the enlarged tonsils and lymph node. both on the right side. i'm just scared and would like opinions. i made the mistake of using google...and now scared out of my mind and worried i might have cancer. yes i'm jumping the gun but i was curious. anybody w/ tonsil cancer or Mucoepidermold carcinoma? closest thing i found on google. sorry...just worried and needed to vent and get opinions. thank you in advance.

Larrykins
Posts: 38
Joined: Jan 2012

Hi Stephanie,
I was in the same boat as you this time last year. I went to ENT specialists (2) and neither did a biopsy. They both thought my left tonsil looked 'odd' and I had a lump in my left side for around 5 years. My neck used to inflate twice a year but no one saw anything in blood tests either. They also wanted to operate, neither even mentioned cancer. An MRI I had done was mis-read. They told me I had a non-cancerous lump in my saliva gland and should have it out.
During the operation they saw no tumor in the gland but 3 'infected looking' lymph nodes which they took out with the tonsil and tested. The test came back positive for SSC (squamous cell carcinoma).
I was furious because I imagined that they had just scrambled my cancer and spilled cancer cells all over. That if they did a biopsy then I would perhaps have started with radio and chemo and then had an operation carving very large margins.
These thoughts have never left me and although my surgeon has been excellent I still think they should have done a biopsy.
I had a biopsy done on the right lymph nodes after the operation and it was not pleasant mind you! A biopsy on the lymph node is also not an exact science and they can miss the right spot quite easily apparently. The tonsil on the other hand is very easy. It takes minutes and can be done right there in his office.
My initial doctors were ENT specialists not oncologists but still, I am not a professional driver but I can see a hole in the road well enough.
At present I have had all the treatment and I am presently clear. I am 42 and I was lucky enough not to suffer too much.
I know a lot more about cancer medicine now than before but I am not a professional, and don't know anything about your case but if I could go back in time I would ask for a tonsil biopsy. A few sprays of lidocaine, a painless pinch and my doctors would have known immediately what we were up against. I don't understand why this is not standard procedure and when I saw your post it just makes my blood boil.
Another reason to have the biopsy first is that because I was operated before the diagnosis they had to wait a couple of months before the radiation treatment could start. I had to heal first. These months were hard, knowing I had cancer and doing nothing about it. The mind will race. Which is another reason not to Google too much. You are in the right place for info here.
I really do hope you don't have cancer and there are many other reasons for inflammation and lumps which are not life-threatening but they will only see this with a biopsy. And it's so easy to do.
I wish you all the best luck in the world. I also wish I had written your letter on this site one year ago and had it read by me. You are already ahead! Insist. You are in control of your health.
Larry

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

Hi Steph,

April 2011 I found a small lump maybe quarter siz or less on the right side of my neck, went to my internist and ws then referred to an ENT. By the time I saw him the lump had gotten a bit larger, he also scoped my throat and asked if I realized my right tonsil was enlarged and inflmed, I told him know that my throat didn't hurt or no other problems swallowing. He sent me for a fine needle asperation, that was inconclusive, then went for a PET scan after which he said he was going to remove my tonsils.Had the surgery on June 27th 2011. He only removed the right tonsil, on a follow up visit 2 weeks later he told me I had SCC, squamous cell carcenoma (sp) or cancer of the rt tonsil. I asked how I could have gotten this and he said if I was a smoker, drinker combination of both, he would say that was the cause, but since I don't do either I fall into that small category of we don't know. Others here will mention HPV, but since he didn't mention it nor did I know about it it was never discussed. My ENT sent me to a oncologist, that was at the end of July, who discussed treament with me, all of it was overwhelming at first as I certinly had no clue ...but by Aug 8th , I was receiving the first of 3 all day chemo infusions of cisplatin,taxtore and 5fu,the 5fu was in a pump that I wore from monday thru friday, I had 1 infusion every 21 days. After the 2nd infusion the lump on the right side of the neck was gone. On Nov 3rd I started radiation, I went every day for 7 weeks for a total of 39 treatments, along with a weekly infusion of cisplatin. While the treatments are long, for me they were very doable, with little or no complications, but as you will read here everyone is different. Like you I was scared, read the stuff on the internet which I came to realize is a lot of doom and gloom. This site and the folks that post here are a wealth of knowledge, never be afraid to ask a question. Each doctor has their own protocal for treatment, no 2 are the same.

Blessings,

Linda

RogerRN43
Posts: 185
Joined: Sep 2011

Unilateral tonsil enlargement can be a sign of infection, chronic inflammation, or malignancy. Easy for me to say but keep busy and keep your mind off the thought of cancer. It is not cancer until you are told it is.

Your ENT sounds like he wants to do a diagnostic tonsillectomy which will be biopsied. Since you said you've had an enlarged node for a few months and that it may have grown, a quicker diagnostic method would be for the ENT to do a Fine Needle Aspiration Biopsy (FNAB), he inserts a needle in the node, extracts some cells, they are stained on a slide, and they examine the cells. The results can be had in a couple of days.

Googling will drive you mad with anxiety and it's not worth it until you get a proper diagnosis.

Be positive. Wishing you the best. The support is here should you need it and hopefully you won't.

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Mine started as just an irritation, then eventually a lymphnode puffed up also.

My ENT was the first specialist that saw me after my GP whom only prescribed antibiotics which didn't work.

The ENT scoped me, had me do a CT and come back and see him that same day. He told me at that time he was 95% sure I had SCC (Tonsils). Since I had never smoked more than likely HPV+ as well.

That was on Friday, that following Monday he took the tonsils out, and did a quick biopsy..comfirmed STGIII SCC Tonsils. He sent the tissue out and a few weeks later confirmed HPV+.

Not telling you to say yours is the same, I have no idea...that's just how my story began over three years ago.

Sixteen weeks of four different kinds of chemo, seven of which were concurrent with 35 daily rads.

Hoping your isn't cancer, but if it is...it's a tough regime, but doable.

Best,
John

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Steph, I'm closing on two years post treatment. Not for mucoepidermoid, but SCC at base of tongue. It sounds like the tonsilectomy will be the least painful way to diagnosis.

I went to my primary after lympnodes on one side remained enlarged for over two weeks, no flu or cold. I was lucky that my primary care doc didn't give me antibiotics, but instead sent me right to a specialist surgeon. He didn't believe in the absolute reliabiltiy of fine needle biopsy, so he took out a lymph node which came back positive.

From the posts already made, it sounds like the tonsilectomy for biopsy will be relatively painless, and provide a reliable diagnosis.

Do that, then think. Don't think about it until them. Easy to say, but not impossible to do. As advised, stay away from Internet until then or prepare to be assimilated.

best of luck, hope it's infection,

Hal

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Hal, with all due respect.....the week or so of tonsils coming out and healing up was pretty much equaly to the last few weeks of rads...at least for me.

It is what it is, but it was no walk in the park.

Also like LTS suggested, the FNA is an option, but if the tonsils have been giving you fits for a few years. They more than likely just might need to come out for a number of reasons...

Best,
John

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hear you John. I don't have experience and misread Larykins. He was talking about a FNA, and I thought they had taken his tonsil out. I thought it sounded too easy. I had one lymph node out. Had to be put out, but outpatient; that wasn't too bad.

best, Hal

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Whoever told me Oh, just eat a lot of Ice Cream....had no clue.

Man it was rough having a big scoop of tissue taken out of the sides of your throat....

The procedure itself wasn't that bad, not even for a few days. But when they started to heal and scab over whatever, they hurt bad when swallowing anything with substance.

And for me, forget anything cold, or hot for that matter...cold really hurt, so Ice Cream was definitely out of the question.

I remember a lot of runny thin instant potatoes and clear gravy, LOL....

Best,
John

Larrykins
Posts: 38
Joined: Jan 2012

Tonsilectomy was the most constant, unstoppable, inescapable and longest amount of pain I have ever had! Cancer treatment was a walk in the park by comparison. I felt like a beast being slowly slaughtered. Not normal.
It's why I have never questioned why they would only take out one tonsil and not the other as they must both have been equally mistreated. I couldn't eat or sleep for 2 weeks. Screaming in agony all the while.
Don't let this put anyone off however...

longtermsurvivor's picture
longtermsurvivor
Posts: 1791
Joined: Mar 2010

If you do a fine needle biopsy, it will come back either positive or negative. If it is positive, you can move to treatment without doing the tonsillectomy. If it is negative, you cannot trust that there isn't cancer somewhere else in the tonsil, so you will then need a tonsillectomy after the fine needle biopsy. Either approach is acceptable.

Of course, the tonsillectomy isn't curative for cancer anyway, so if this is a malignancy, it will require definitive treatment, like radiation. No matter how you approach this, the tonsillectomy is for diagnosis only. I hope I haven't confused you with this.

As others have said, you don't know that this is cancer. It may still be completely benign diseease. And as others have also said, it actually doesn't help you to spend time on google at this juncture. All you can possibly do is freak yourself out. Your job right now is to just keep your head together, get the next step done, and see what you've got.

Best wishes.

Pat

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

Needle biopsies are hit and miss. Upon recommendation of my ENT I elected to have a suspect lymph node removed for biopsy and I am glad I did. Not only did it prove what was already a suspicion, it may have eliminated the area of metastasis assuming it did not migrate to other nodes. As an aside. Several years ago I had prostate cancer. After a couple of years of rising PSA I elected to have a needle biopsy (in the office with NO anesthesia). They took 12 samples and it was neg, two years later I had it done again with anesthesia this time but neg again. A year later another one, this time it was positive in an area that was missed the first two times.

Larrykins
Posts: 38
Joined: Jan 2012

That's what I heard from my doctor too. Some love them some think waste of time.
Tonsil biopsy on the other hand much surer bet.

tracylc31's picture
tracylc31
Posts: 9
Joined: Feb 2012

The winter of 2005-2006, I had several colds and sore throats. The lymph node in my neck was swollen. I kept waiting for it to go away. It never did. In May 2006, I started running a fever and feeling really bad. My dr. checked me for mono. It was negative. Even though it was negative, we tried 3 different kinds of antibiotics. Still wouldn't go away. She sent me to an ENT who tried a fine needle aspiration but couldn't get enough cells. In July, he took out the lymph just to be sure it was nothing. That wasn't the case. They knew it was cancer but didn't know where it had came from. In August, I had a biopsy done of the whole nasopharyngeal area. It came from the base of my tongue. After 2 rounds of chemo and 36 radiation treatments, I am cancer free. I'm not going to tell you it was easy, cause it wasn't. But you must keep a positive attitude, no matter what the findings. To this day, I never realized how sick I was. Even my ENT told me, "I can tell you this now, but I would have never told you this before....I didn't think you was going to make it." So if things were that bad and I am still here to tell my story, it can be done. I hope all goes well for you.

mommysteph0891
Posts: 5
Joined: Jan 2012

Tonsillectomy done last Tuesday. Had both removed even tho only the right was swollen. I'm healing fast. Now just waiting for those test results. The doctor said he saw nothing of any concern but said there was little white bumps, or white pus on my lymph node. He even checked my nasal & that's all he saw. I'm praying & hoping to God this means it's only an infection? But he said he sent out the tests. Hate this waiting game. :( I'm trying not to think about it but it's just so hard. Can't stop worrying & thinking about my 4 small children.

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

Just stay calm....I'm willing to bet it's not cancer at all.

My ENT and I'm sure yours does as well, actually had the ability and did a quick biopsy on the tissue at the same time he removed my tonsils.

In my case he staged me right then as STGIII SCC Tonsils. Didn't even have a need at that point to test the tumor off to the side.

A few weeks later the official reports came back and also confimed it as being HPV+.

I of course can't guarantee that as I'm not a Cancer MD Professional. But I'm going off of my experience and my MD's ability to check the tissue at my facility.

The white spots/bumps are usually indicative of infection caused by many things, streph being one for instance.

At this point there is nothing that you can do to change what the Dx will be...worrying about it will do nothing more than at stress to your situation...so try to chill a little.

Easier said than done, believe me I know...

Best,
John

mommysteph0891
Posts: 5
Joined: Jan 2012

The time to respond. I know I must've looked like a crazy, worried person & I thank u all for being so kind & patient w/ me, Instead of booting me out & telling me im in the wrong forums. It was only a bunch of chronic infections. I pray & wish you all good health & fast recoveries! I pray u all will be & stay cancer free. God bless you all!

longtermsurvivor's picture
longtermsurvivor
Posts: 1791
Joined: Mar 2010

live long and prosper. Gee, I always wanted to say that to somebody.

Pat

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

LOL, hey we all had to start somewhere.... I'm actually very happy that it's not your time to report for duty here....

Thoughts and Prayers that you never will,
John

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Thanks for sharing your wonderful news. Unfortunately our minds go straight to cancer when we have a lump/bump-seems to be human nature.

I'm so glad your results were negative and wishing you a speedy recovery. God bless

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