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Anyone else with unknown cheek mass anterior of parotid gland?

In a daze
Posts: 7
Joined: Jun 2010

About 2 years ago I had a marble sized lump in my left cheek--dx was blocked parotid gland. It resolved on its own. In January of this year I felt another lump thing in the same general area. The mass has a thread from the top of the cheek( off the gum) coming down into the mass. The mass is moe like V with a tail and then 2 little bebe like lumps. CS,MRI, Ultrasound,Xray--they can not identify mass. Today I was told that surgery to remove the mass will be scheduled  next week and he will try to remove entire mass.. The mass is anterior to the parotid gland. ENT said be prepared that it since it is not in parotid that chances of a benign finding are minimal. He discussed referring me out after the surgery--I live in rural SW Montana. So of course now I wait!!!! I came to CSN to seek info because if the outcome is cancer I plan on being a survivor.  AND everyone here went through the I don't know phase and the wait for surgery. I forgot to ask how soon he will knowthe outcome following the surgery-I blanked out. Any and all comments/suggestions welcome  .  Elizabeth

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

I'd say welcome to the forum, except it looks like you've been here way longer than I have.  I'm here in Montana, too.....tho, so that makes us sisters in a way Smile.  The biopsy results should only take a couple days....I don't know where they are going to send them (Billings, maybe?)....but between phones and IT communications, I can't imagine it would take any longer.  The waiting is the hardest part....there's so much of it between every single procedure....wait for the surgery, then wait for the results....then of course, waiting for the treatment plan to be drawn up. 

I'm glad your Dr. plans on referring you somewhere else after this surgery, tho....are you sure you don't want him to refer you earlier, and let a big hospital do the surgery....you still have time to do that?  I don't know where you are, but do know that where ever it is, they don't do a lot of this kind of surgery.  Practice makes perfect.  I'm thinking you aren't horribly far from Denver.  Just a thought, since you still have a week to make up your mind.

p

 

In a daze
Posts: 7
Joined: Jun 2010

THANK YOU SO MUCH FOR RESPONDING!! I was on the forum for info when my significant  other had pancreatic cancer in 2010. The support and info helped me tremendously during that time. Never thought I'd be back for my own questions.

I am Dillon. Surgery is to be in Butte by Dr. Kaufman and then a referral if necessary to Missoula.

My greatest concern is that the imaging has not helped them get any idea what the mass is.Where did you get treatment?

Salt lake is 5 hrs denver is 800 miles.

Elizabeth

 

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

in the SE corner, that's why I thought Billings.....I'm in Kalispell, and had my treatment here....but didn't decide to do it here until I weighed all the options of going somewhere huge to have it done.  For the type of cancer I had, the medical center here had all the most modern machines......and the Oncologist I choose is on top of all the treatments, so decided to stay.  This medical center in Kalispell has the best in the state....but if I'd had even a tiny red flag come up, I would have been out of here, and either in Seattle or Houston. 

Honestly, if it were me, and I was looking at going to Butte, but SLC was only 5 hours away, I'd think a second opinion from there would be very doable.  There is a large Cancer Center there....and you won't be unique....they'll have seen lots of cases like yours, and that's what you want.  We have a member on here "T".....he went to his local Dr. and hospital when he first got diagnosed....then on a whim decided to go to John Hopkin's for a second opinion because it was only a few hours away.  The treatment plan was night and day different at a big hospital, and far less damaging to his body.  He dumped the local hospital immediately.  I'm just saying you have time to check out things before you have surgery in this state.  This is a link to the University of Utah....maybe just give them a call...or send an email?

 http://www.huntsmancancer.org/

p

jpk
Posts: 1
Joined: Mar 2013

I would think that the fact it is not in the parotid is a good thing.  I just had a parotidectomy, so if you have questions about that maybe I could help.  Try not to worry until you find out what it is.

In a daze
Posts: 7
Joined: Jun 2010

Thanks for responding. My ENT stated that majority of tumors in parotid are benign  I am not really worrying  -just anxious to KNOW. I know that I have no power over the outcome - it is what it is .

In a daze
Posts: 7
Joined: Jun 2010

I

I did call Huntsman and Billings. Both said I needed a dx first before being seen at either place. I have confidence in my ENT and will likely go forward with him doing the surgery. I am feeling crazy just waiting around. Elizabeth

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

they told me the waiting was the worst part.  Now that I've been thru treatment, I can tell you they were right.  Waiting made me crazy....all the anxiety, and knowing that all I really wanted was for it all to be gone.  I'm going to tell you something we tell each other here all the time.  It is not cancer till somebody in the know say it is.  Our minds take us always to the worst possible scenerio.....but we've had several people come back and tell us it was something else.  For the time being, tho.....don't go looking around the internet checking out symptoms......all symptoms lead to cancer eventually when following links in the internet.

Take some deep breaths.....we'll be here to hold your hand till you find out what it is.

p

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Hi Elizabeth,

From reading your posts, I understand you're considering going ahead with the surgery locally. I see your ENT discussed referring you elsewhere after surgery and getting the pathology reports which he feels will be positive. I understand if you have trust in your ENT BUT...... 

I'd like to offer some very sage and sound advice from personal experience.

Get a 2nd opinion! Let me repeat that... GET A 2ND OPINION! Do it at a Comprehensive Cancer Center and do so BEFORE you have surgery and before anything else is done even if it means travel and a short delay. Certainly, if your ENT feels this is that urgent of a situation that doesn't warrant any delay, then I understand you moving forward but if not? Seek out a 2nd opinion.

Let me share why I'm so vehement about this. 

Long story short, I was Dx's with Squamous Cell Carcinoma Head and Neck on Nov. 30th 2012. Tx N2b, MO Stage IV. I underwent a tonsillectomy and biopsies locally on Dec. 21st 2012. They were unable to locate the primary site. I was then referred by my local ENT to a Radiology Oncologist and a Medical Oncologist at the local hospital's Cancer Center. Both myself and my partner were not entirely comfortable with the meetings. There were just some things that didn't sit right.

I'm two hours from Johns Hopkins in Baltimore. They are a major Comprehensive Cancer Center and one of the best in the country. They took care of getting any of the test results and pathologies I couldn't acquire and had no issue setting up an appointment for a second opinion. Upon arrival, I was taken to an exam room and within minutes an entire "Team" entered the room. A Radiation Oncologist, A Medical Oncologist, an ENT/Surgical Oncologist, a Nurse Practitioner/Manager, a Speech/Language Pathologost and the head of the Cancer Center. They all had reviewed everything and were on the same page concerning what they thought a treatment plan would be. I was poked, prodded and examined more in 25 minutes than I was the entire time locally. 

Mind you, I had the 2nd opinion done prior to starting any treatment locally. 

Upon review of the treatment plan, they informed me that what they had planned for me locally would have, in all likelyhood, caused permanent and irreversible damge to my voice (I'm a guitarist/singer) and based on the size of my tumors and unknown primary, it fell far short of the best case scenario for a cure/NED result.

In retrospect, I wish I had just started out at Johns Hopkins as I lost about a month before treatment started. Being here means being out of work for 2+ months, maybe more and being away from home but in the big scheme of things, it's a drop in the bucket and a very small sacrifice to make for my life. I had the cancerous tumors removed on Feb 7th and it was a good thing we did. They had grown large and had interwined themselves in the nerves, muscles and blood vessels in my neck. Had I stayed locally and gone with their plan, I wouldn't have stood a chance. Their plan was radiation and chemo and see what happens! Maybe surgery afterwards. My Team feels, especially after seeing what was going on inside, that would have been unsuccessful. 

This is your LIFE we're talking about. Please know I'm not doubting your doctor's knowledge or skill nor I don't mean to come off harsh or insensitive to your needs or situation.  This is just common sense advice when dealing with something as serious as cancer and I as well as everyone here want to see you come through this. 

This rant may well be for naught if nothing serious is discovered but again, it's better not to take chances with something like this. Perhaps you can get an appointment with an ENT at one of the cancer centers you contacted?

Positive thoughts and prayers coming your way!

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

i wish i would have had someone to tell me to get a second opinion when i was first told i had cancer.  i had cancer of the voice box and received 35 rad trmnts.   was told chemo wasn't necessary.  the cancer came back in 2012.  only i don't believe it came back, i believe the rad didn't kill it all.  i can't help but wonder if i had received chemo, if it would have killed it all.  then, i had to have a larengectomee.  again, i didn't think to get a second opinion to see if we could do chemo instead of the surgery and i've  been sorry ever since.  i hate having then stoma and all the side effects that come with it.  I no longer breathe thru my nose and mouth but thru the hole in my neck.  I can't smell, sniff, blow my nose, blow out a candle, eat much b/c food doesn't taste right.  i always have to suction my leary tube out because i'm constantly coughing up phlem.  i never leave my house b /c i would have to take my suction machine with me cause like i said i have to suction at least every 15 minutes.

sorrry for running on, just wanted to echo what the others are saying about the 2nd opinion.  i will be praying for your results to be good and hope you know thaat you can come here to talk anytime you need to.

God bless,

debbiejeanne

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

Hi Elizabeth! I had a tumor in my sublingual gland that was cancer, my dx was Adenoid cystic carcinoma.  There are several others on here that have had tumors in various salivary glands. It's not cancer till they can prove its cancer. The ENT that did my surgery kept reassuring me that it wasn't cancer. I wish he was right, but regardless I received great treatment & have had clean scans for the past year. Sounds like everyone is offering sound advice to get asecond opinion. Bottom line though, do what you feel comfortable with. Best wishes to you, and prayers that this worry is for nothing!

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