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Neck masses

abcwangfoo
Posts: 12
Joined: Feb 2011

Thought I had TMJ,told that yrs ago.Gland would swell many yrs ago,while eating. Worse,lately. Oral Surgeon,sent me for MRI,last Friday.Just been told several masses on both neck glands. Any thoughts? Thanks have good week; Pat

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Did the doctor have you do a PET yet, if not I would ask him for a PET to check the hold body. Sometimes these thing are just nothing, like you said it been swelling for years and cancer don’t swell for year. The PET or biopsy will tell you what you have and then take it one day at a time and get the proper treatment you need to get it fixed.

What kind of doctor are you seeing, if I was you I would look for an ENT at one of the Major Cancer places in the US and stay away from small town cancer sites.

All the best to you my friend and welcome to CSN, please stay and give up a follow up on your treatment.
Hondo

tjuhlin
Posts: 19
Joined: Feb 2011

Why did you say "stay away from small town cancer sites"? I'm scheduled to start treatment at one and your comment has made me very nervous. Is there a reason for your statement? I'd like to know, please.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I had Rad twice because the first doctor screwed up on my treatment, then the second doctor only knew a little more then first one did, but not much more, I did not know any of this until years later when having a lot of side affects problems and asking my doctor why he did not get me help before I had this problem.

He said I did not expect you to live this long I never had someone with your type of Cancer before. My Cancer was NPC.

Question your doctor on how many times he treatment someone with your type of cancer, if he says a few times get out and go to MD Anderson of Mayo Clinic or some major cancer place.

Not to scare you but I now live with the side affects of not being treated correctly.

Take care
Hondo

tjuhlin
Posts: 19
Joined: Feb 2011

Hey Hondo, I just wanted you and the others to know I ended up going to the Mayo Clinic in Phoenix. After hearing what needs to be done from the doctor (Otorhinolaryngolist) there at the Mayo Clinic, I knew I did the right thing by going there. There is no way my little "small town" cancer center and local hospital would be able to provide the surgical expertise that is needed for my detailed surgery. My cancer origin is still undetermined but the staff there at Mayo will and are continuing the hunt.

Thanks again.... Terry

abcwangfoo
Posts: 12
Joined: Feb 2011

Hi Hondo;If I go to another DR,not sure Insurance will pay for it.It would be like getting a second opinion.So? I,did have MRI of neck.That seemed scary enough for me. Mass only 7MM(Parotid gland) 5MM,in lymph node. Take care Pat

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Hi abc I have some experience with this. In Nov. 2009 I had lymph node swell to pea size under right ear. I could feel it and had bad ear aches. That took me to doc. Had 2 ENT docs. First one did fine needle biopsy and came back with diag of cancer but wrong type (learnt that later) Something told me to get 2 opinion. Switched ENT and more tests. It turned out I had squamacell cancer of tongue. A tumor was found there. But, much later I also had it in my parotid gland ,,,that was removed. This was over the period of a year.
Read my post "Introducing myself" to get a better time frame. BUT...what I am trying to make a point of is to take Hondo's advise and others. that you need to get to a second ENT. And maybe do some checking into insurance. They usually pay for that.
Don't wait and just go on with your life. Scans tell that there is something there. And by waiting it can spread. And lymph nodes are nothing to mess with. They filter the body. What you didn't tell was if you could feel or see the swelling. If they are that size they can do needle biopsy and you will know what is what. My doc did MRI, PET and CT scans. They all work together to give a bigger picture. Best of luck to you Roze

tjuhlin
Posts: 19
Joined: Feb 2011

Hey, I took your advice (in a round about way) concerning getting a second ENT's opinion. I went to my "small town" ENT for an examination. He did a great job but he knew that the local cancer center and hospital here where I live would not be able to provide what he believed is the proper or best treatment I need. He immediately (and I do mean immediatley) contacted my Oncologist and advised him of his thoughts. I had earler done (the day before) research on my medical insurance plan and determined that I could go to the Mayo Clinic here in Arizona. I passed that information on to the ENT and the time of the examination and within 3 hours my small town doctor had an appointment scheduled for me to see the Head and Neck Surgeon (Othorhinolaryngology) at the Phoenix, Mayo Clinic the next day (yesterday). I now have the pre-surgery examination and tests scheduled for February 28th and neck surgery scheduled for March 9th.

Thank you all so much! Terry

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

The exact same advice I would give you....other than small town cancer facilities. I live in a small town, but in a very metropolitan area. It's also affiliated with a major cancer center.

Bottom line, get a facility that specializes and check it out. If you don't get answers that satisfy you, get more, or from another ENT.

Also, welcome to the forum.

John

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Beware of just any ENT. Two out of three missed Buzz's stage IV base of tongue cancer. Be sure you see an ENT who deals with cancer. Yes, the PET will be more revealing.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Pat, even better, try for the full PET CT as his is the most accurate scan. If you do, follow the Pre Scan fasting very closely as this will affect the accuracy and avoid false results (either way).

Also if possible maybe ask if they do a needle biopsy. Please don't delay Pat, get to a serious centre ASAP and hopefully eliminate the possibility of Cancer. If it is isn;t =great, if it is, the faster you react, the better the outcome - so get cracking - don't take NO for an answer.

Scam

samtheman
Posts: 5
Joined: Mar 2010

Full body PET CT and needle biopsy ASAP! Good Luck :)

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CrimsonRacing
Posts: 17
Joined: Feb 2011

I have to ask what size are they and do they come and go?

My SCC began as 2 small masses on the right side of my neck.......Surgery,Rad.,Chemo....etc.....

Have the MD check to see if it is SCC..........it's fairly common and might get you on track as waht treatment is necessary.

Richard

abcwangfoo
Posts: 12
Joined: Feb 2011

Hi Richard;my masses are small,one is 7MM(parotid gland) Other gland 5MM(lymph nodes)
See;I went to Denist for reg xrays,told him my TMJ,must really be bad.Right gland swelling while eating.He,sent me to Oral surgeon,he had me get MRI.Couldn't stay in for complete,contrast,got scared.Took,CD&readings to ENT&,he said a cyst&small masses. He said suck on lemons,in case a stone in salvtory gland.Lemons NO good for teeth(I found out)'
So;now Iam wondering what the heck to do.JUST quit wondering&get on with things?
What is SCC? I,have been reading on Salivtory gland stuff&cancer. Take care; Pat

abcwangfoo
Posts: 12
Joined: Feb 2011

Hi all,thanks for responding to my question.Haven't done anything yet about,neck masses.Like I said ENT not too worried.I,see him in April.I,guess I ahve to have the faith he knows,what he's talking about. He's the expert.Iam,still worried. Have a good weekend&HUGS Pat

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

I was told mid dec. 1995 I had infected glands take this antibiotic and if it does not go away call me in 10 days. Turns out 5 weeks later I has SCC(squamous cell carcinoma) cancer. By that time it was 5 golf ball size wrapped around carotid. Told they were too big to do surgery they had to shrink them with chemo and radiation and then surgery.

Amazing how fast this grows. It does not do a wait and see.

I suggest finding a head and neck cancer ENT with experience. Medical Schools are good place to start. Most cities with 300,000 have some type of connection at hospitals or cancer centers.

I know waiting just doe not work for me.

Good luck Pat

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Pat,

Personally I would not sit on this but find a good ENT guy and get a conclusive test done.

If it's nothing - great ! it is something more sinister, then you are onto it faster. If it is cancer, then the quicker you get moving the better.

SCC is Squamous Cell Carcinoma, the most common of the throat and mouth cancers. It just describes the types of cancer cells present.

They may be able to do a needle biopsy as a test. If you go for the PET CT again, tell them you had some difficult and they can give you something to allow you do the Scan without the anxiety.

Bottom line is to find out conclusively what is causng the swelling. It is not something I would wait for. Doctors don't get it right all the time so you need to be proactive and persistent until you get answers.

Scam

KTeacher
Posts: 993
Joined: Jan 2011

My ENT was not concerned either, no characteristics of cancer. June 2009 went in to have a lump removed from my lip--ENT was more concerned with other spot, did not remove lump.
What he took out was pre-cancer. After swelling of surgery went down, original lump was still there. Had to cancel an appointment in March 2010. June 2010 saw ENT, I want lump removed. No visible sign of cancer (have been to dentist and dermatologist during this time also). Surgery scheduled for office in July. Between June and July lump grows to the size of a peanut--doctor wants to do surgery at a center with a pathologist, still doesn't think that it is cancer. Lump removed 2 days later, one week later post op--CANCER. Rare and aggressive. Whirlwind begins; MRI that afternoon, PET the next day and Stanford for Tumor Board Thursday. Poked and prodded, tube down throat (gag!). Surgery the next Monday. August 9, 2010 surgery at Stanford. 1 inch of upper lip removed and stitched back together. Path report says it is not clear, reopen and take more, clean margins.
Dentist for tooth removal, radiation.
Get a second opinion, don't wait, hopefully nothing but if it is cancer, get it as early
as possible.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Sounds like you went through quite a bit, hope you are doing better now. Also Welcome to the family here on CSN hope you plan to stay.

Hondo

oopsydoopsy
Posts: 3
Joined: Feb 2011

I know you worry and think the worst already,, Try to ease off your mind and be happy. Enjoy today and do your best. Let us know in April after you see your ENT doctor. Ask lot of questions to make sure that you get all your answers.

tjuhlin
Posts: 19
Joined: Feb 2011

Wangfoo, you really need to get going on this to determine what is causing your neck masses. I waited/wasted two weeks because I believed the local non-emergency care facility's two NP when they both told me that I had a Salivary Gland infection and prescribed two different strength antibiotics to treat my neck mass. I knew almost immediatley that the antibiotics were not working but continued to believe what both NP's told me (what was funny is that the mass in my neck was near the Salivary Gland but not at the gland itself). It wasn't till I went to see my primary care physician (the third week) that the alarm was raised and I began to get the needed testing done (CT,MRI & PET). I went to one of my town's ENT doc's and he knew he was in "over his head" and that I needed to see a specialist. I am grateful to this particular ENT that his ego didn't step in and he immediately referred me to a "out of town" specialist. Though my "battle" has just begun, I do have a direction to go and the information I need to begin the fight.

Start Now! Terry

donna340
Posts: 72
Joined: Nov 2010

Do not wait... If you have to pay for the second opinion out of pocket its well worth the peace of mind. Stress and worry do more damage to your body than good.

Please do not wait to long. SCC of the head and neck is a very aggressive cancer. Im sure if you would provide your location someone on here can give you a name of a very good ENT doctor for a second opinion. Thats whats great about this site we have help comming in from all over the world 24 hours a day seven days a week. Take advantage of it thats what we are here for!

Sending lots of prayers!

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Like mentioned SCC is fairly aggressive....

Mine started in the tonsils (first I noticed anything going on). That was somewhere between October - December 2008. Within just a month or so it already popped up a secondary tumor in my neck a little lower than my ear.

I would get a second opinion also. Like mentioned, you might be out a few bucks if it's nothing. But, your piece of mind will be huge. If it is cancer, then you'll be a few months ahead of the game, versus waiting until April.

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Glad you are all squared away and going to Pheonix. Sounds like a good plan.

tjuhlin
Posts: 19
Joined: Feb 2011

Thank you again for your advice and information. My surgery is March 9th with radiation to follow.

abcwangfoo
Posts: 12
Joined: Feb 2011

Thankyou for all your replies in Febuary.Iam going for a Catscan;today(May 25th) Will,know in a day or so,If masses grew.If so;I want a biposy. Take care all. Pat

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