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Update - July 2005

I intended this page as a good place to post stories about mucoepidermoid carcinoma.  From all reports, there are very few resources on the web focusing on this very rare cancer, and those sites which do focus on parotid carcinoma tend to be full of success stories for other, more treatable varieties.

For now, you can read about Karen S., Michelle, Pam's Dad, Nancy K., Christine, Kim W., Barbara, Lisa, and Ryan below.  I had considered creating a public forum for my site, which would include a section for cancer stories, but the time commitment to maintain a forum seems beyond my ability at this time.

Please feel free to e-mail me a short bio to post, subject to the standard disclaimers.  I'm happy to include links to other personal sites, or to general sites of similar intent.  Due to increased spam (from listing my email address on this page) I've had to change the address to cancerstory (at) this domain.  The old address is now a black hole - email sent to that address is deleted before I even download it.

Thanks to Michelle's mom, Lori, for pointing me to patientsforum.com, a website devoted to patients of tumors of the parotid gland.  That site has more stories, as well as a discussion forum.  As of this writing, I haven't yet talked to the organizers of that site, but I would like to establish contact to see if and how we can collaborate.


Karen S., 32 year old female from Holmdel, NJ
Submitted August 2001

I was recently diagnosed with Mucoepidermoid Carcinoma, Intermediate Grade. (on the floor of my mouth) and it has changed my life forever.

June 18, 2001 they found the tumor at my dentist office during a routine visit.

June 21, 2001 the oral surgeon removed the tumor thinking it was benign.

June 23, 2001 My 32nd birthday, spent it recovering.

June 26, 2001 I got the call, it was malignant, Mucoepidermoid. After consulting with a few Head and Neck Oncologist including Memorial Sloan-Kettering, I decided to go with University of Pennsylvania. It was a hard decision.

July 21, 2001 I had an 8 hour surgery at the University of Pennsylvania with an excellent doctor, which included removing some lymph nodes, and a huge part of the floor of my mouth. That was the definitely the hardest recovery I have ever encountered. Feeding tubes and trachea.. I had the whole works.

August 6, 2001 Results from my surgery, all clean margins and lymph nodes. However, one bad thing I have perineural invasion, so he recommends radiation.

On August 27th I will start my radiation in Toms River, NJ and am very nervous about it, the side effect will not be fun.

I'm looking for others with this rare Mucoepidermoid,  I would love to hear other stories and be each other support team. I have had no luck except for Barney's story. Bless his heart. I thank you Bruce a million times over for letting me tell my story on your site.

my email: karen [at] interactivepros (dot) com

Michelle, 14 year old female from Connecticut (as told by her mother)
Submitted February 2002

March (?) 2000 - Michelle feels a lump on the side of her face/jaw in front of her right earlobe. Unbelievably, she tells me from day 1 that this is a tumor! I tell her she is overreacting. The physician's assistant in the doctors office believes it is just a swollen gland that could be due to acne or a canker sore in her mouth.

November 2000 - Lump is still there, so we have it checked again. It is slightly bigger now. Physician's assistant sends us to an ENT Surgeon to have it checked out. ENT doctor thinks this is a self-contained, solid benign tumor in her right parotid gland (main salivary gland). It's unusual for someone so young to have one, but these are not uncommon in the salivary glands.

December 2000 - When the doctor goes in to remove the lump, he finds that it is not self-contained and is in fact characteristic of a malignant tumor. The facial nerve is involved, so he does not attempt removal. He only removes enough for a biopsy and closes up. Lab results come back mucoepidermoid carcinoma. We are then sent to see a specialist (Otolaryngologist) at Yale Medical Center.

January 2001 - Surgery is scheduled to remove entire right parotid gland with facial nerve grafting to be done (maybe 2 out of the 5 main nerves). They plan to remove nerves from her leg and graft to the facial nerves involved. Prognosis on the nerve grafting is paralysis for 9 to 12 months (she would look like a stroke victim) with anywhere from full recovery of feeling and movement to possibly permanent paralysis. We won't know prognosis on tumor until after surgery. We prepare for the worst.

Surgery is a major success! The surgeon was able to remove the entire tumor without sacrificing any of the facial nerves. He also did what is called a partial neck dissection, which is to remove the lymph nodes closest to the tumor. Margins on the tumor were clean and lymph nodes were clear. Michelle had some minor paralysis in the corner of her mouth and lower jaw due to the surgeon having to manipulate the nerves during surgery. They were bumped and bruised and scraped for biopsy. This was only temporary and lasted about 3 months. After meeting with radiology specialists, we decided against follow-up radiation. Due to Michelle's age, we felt that the possible side effects from radiation were greater than the chance of reoccurrence without radiation.

This all sounds neat and tidy, but between November 2000 and January 2001, we saw many different specialists. We talked to doctors at The Children's Hospital (Harvard) and the Dana Farber Cancer Center in Boston. We consulted a Pediatric Oncologist here in Connecticut. We spoke to radiology oncologists at Yale in New Haven and at the Wittingham Cancer Center in Norwalk. I tried to find any information online. There is not much out there on this type of cancer, and there is even less out there on kids who get it.

August 27, 2001 - Michelle feels a lump on the right side of her neck between her ear and shoulder. She has strep throat and the doctors tell us it is a swollen lymph node due to infection. We are told to finish antibiotics and wait 3 weeks. Lump is still there.

September 20, 2001 - We are sent to ENT doctor to have it checked. He also believes that it is swollen lymph node. Wait another 3 weeks.

October 10, 2001 - Michelle is due for quarterly checkup with Otolaryngologist at Yale. We have him check it for us. He believes it may be due to acne and agrees with the other doctors diagnosis'.  He orders a chest x-ray and puts Michelle on a stronger antibiotic for 14 days. She is also seeing a dermatologist and using a prescription face wash and ointment for acne. October 31 - Chest x-ray clear, still thinks lump is swollen lymph node.

January 30, 2002 - Acne seems to be under control and lump still has not gone away. We call the doctor at Yale to have him look at it one more time. He still thinks that it is just a swollen lymph node, but has scheduled a needle biopsy to be sure.

February 2002 - Needle biopsy performed. Preliminary results say everything is ok.

Even though this turned out to be nothing, we will always think every lump or bump is the cancer returning. I wish my daughter didn't have to live her life with that kind of "black cloud" always there.

Submitted September 2, 2002

Hi!  My name is Pam and I thought I'd send you my dads story (to date). 

In 1-02 my dad (age 68) found a lump next to his right ear.  This was just after a visit to the dentist.  He talked to the dentist who said he hadn't felt anything and it was probably just a blocked duct.  After antibiotics didn't get rid of the lump, the dentist referred him to a dental surgeon.  This Dr. determined that it was a tumor but was likely to be benign.  The FNA came back inconclusive.

In 2-02 my dad had surgery to remove the tumor.  Unfortunately, the biopsy they took during surgery came back malignant so they had to stop the surgery.  He was at an outpatient facility and now the procedure became too much for the Dr. to handle.  So in 3-02 my dad had a 7 hour surgery to remove the tumor.  The lymph nodes were left in because they were clear.  The surgery went well with some facial paralysis.  The biopsy came back mucoepidermoid cancer.  So my dad endured 8 weeks of radiation. 

Six weeks after finishing radiation (7-02), the cancer was back!  Now our options were severely limited.  We could let it go and my dad would die.  Reading Barney's Story told just how his death would happen.  While it was very difficult to read the story I am so glad I had that kind of info available to me.  The surgeons gave my dad another option.  Very radical surgery.  Very disfiguring surgery!  My dad really wanted to know if the surgery would be worth it.  He was given about a 25 % chance of full recovery by one doc.  Another told him he had to have the surgery because if he didn't his death would be a very unpleasant one but with the surgery when (not if according to our "doom and gloom" doc) the cancer came back it would do so in another area (brain or lungs) and they could make him more comfortable while he was dying.  What a decision to have to make.  My dad decided to try the surgery. 

On 8-27-02 he underwent 16 hours of surgery.  This included removing a lot of muscle, skin all around the cancer cells.  This meant my dad lost pretty much all of the right side of his face!  Yes, my dad no longer has an ear on his right side.  He lost a bit of upper jawbone (right across from the ear).  His eye and mouth are alright except for the previous paralysis.  His mouth is off centered because of the jawbone part they took.  That can be taken care of with some kind of device.  They also removed the back lymph nodes because they found the cancer was just beginning there.  They also removed the jugular vein since some cells were on it.  There was a team of three doctors during the surgery.  One did the "top" stuff, the 2nd was the deep skull surgeon and the 3rd was the muscular-vascular surgeon who did the reconstruction.  They took tissue and muscle from my dads back and "tunneled" it up to his face and then reattached it.  It covers everything they removed including where his ear used to be.  They say in a few months he can have another surgery to attach a fake ear.  Yippee, more surgery.  My dad spent 4 days in surgical ICU and then one day in an intermediate care unit.  Then they released him.  He came home last night.

His recovery has been faster than we thought possible.  He never even had time to heal from the RT.  I think his stubbornness has helped him.  I know I've included quite a lot of details.  But I couldn't find any info about this type of surgery anywhere.  The patientsforum is wonderful but most of the tumors are benign (luckily!)  and there isn't any info about what my dad went through.  So now if someone else reaches these same steps maybe they'll have a bit more info than I did. 

This was a very brutal surgery and there were many times during the first few hours that I wondered just what we had done and whether it was the right choice.  My dad saw himself for the first time today (9-2-02) and was pretty shocked by what he saw.  We knew all along that the ear would go.  We knew just what would be done.  But there is nothing to prepare you for the reality.  My dad is a strong man who doesn't usually care what other people think about how he looks but even he is scared of people seeing him now.  I hope as he heals, and the stitches come out, and the skin blends together more, I hope he isn't scared anymore. 

I know that no matter what he looks like now, he is still my dad.  And now he has a chance at life again.  Even if its only a slight chance.  Feel free to use this story any way you want.  The more information people can get, the better they can make decisions.

Nancy K.

Received September 7, 2002

I found a small bump last summer (2001) which turned out to be a parotid tumor, and in December I had surgery to have it removed. It turned out to be mucoepidermoid carcinoma, low-grade. Although the tumor was already in the muscle and fat tissue, all the margins were clean. My surgeon discussed radiation with me but I have decided not to have it yet. He doesn't think it will come back. I am now 48 years old and healthy, with no cancer in the family.

I think I also remember you saying you went to University Hospital in Cleveland. I am also from the Greater Cleveland area, but I went to the Cleveland Clinic. I had a great ENT surgeon, Dr. Strome. After surgery I had complete paralysis on the left side of my face which started coming back after about 3 months, and was 99% after 6 months. But I still feel he saved the nerve, other surgeons would have cut it.

Please write back if you can. I would be glad to share any other information if you're interested.

Nancy K.

Christine

Received October 4, 2002

Hi. I am a 36 year old mother of 3 children and also had mucoepidermoid carcinoma. I was diagnosed right after my second child was born. I had a lump for 2 years and had been to a couple of doctors (an ENT and an oral surgeon) and they both felt it was a benign mass. I finally sought out another ENT who did remove and it turned out malignant. This was exactly 5 years ago. I did not do any radiation on his advice and on advice of ENT at Sloan Kettering, however, I get a yearly MRI.

I would be happy to share my story as this is the first website I've come on like this. Mucoepidermoid carcinoma is so rare. Thank you for starting this site.

Kim W.

Received November 3, 2003

I can't thank you enough for taking the time to spell, out in detail, Barney's story.  Information is scarce on the internet!  My uncle is about where Barney was in June of 2002.  But, nobody will give us any information about a prognosis.  His ENT surgeon sent him for radiation after the initial tumor was removed,  then returned within two weeks.  Then the ENT sent him to another surgeon at OU Medical Center, who said he couldn't do surgery because it would come right back and it would take off too much of his face.  The surgeon has referred him to an oncologist for possible chemotherapy(2 1/2 weeks later!).  We go to that on Thursday. 

I don't think anything can help him now.  Even with radiation it is visibly growing every day.  It has closed off his ear, and almost shut his eye.

My Mom finally got the nerve to ask just how long my Uncle has and was told "This isn't a movie, I can't give you a timeline".  She didn't ask for a specific day, or month or even year!  Just some idea.  All he said was "It could go to his brain and kill him."  I think this is way out of his field, he didn't know what to do or say.
 
Thanks to your website, we can be a little better prepared.  I wouldn't have expected the blood, I'm glad I know in advance.

Thanks again for the information, it is greatly appreciated.

Blessings to you and your family,

Kim W.

Barbara

Received October 25, 2004

Hello,
I just wanted to say thank you for sharing your dad's story.
 
I donít have specifics but I will share what I do know and feel free to post it on your site.
 
My husband Jim ( now 29 yrs old) found a lump the size of a dime near his jaw bone  in (roughly) Feb 2003. He was soon to be 28 yrs old. In 3 wks time it grew to the size of a golf ball. We saw the primary who sent us to an E.N.T. ( DR S.) The E.N.T. did a needle biopsy which lead to Jim's 1st surgery on March 27th 2003. The surgery left Jim with a paralysis of the left side of his mouth. The nerve grew through the tumor and had to be severed. It was suspected that Jim had the tumor since he was small b/c when I met him (1997) he already had a crooked smile. The biopsy resulted in a a mucoepidermoid carcinoma. I donít remember sizes or grades. I just know it was malignant and not common in Jims age.  The E.N.T recommended a second surgery. She was not confident and neither were we that she could do a good job. She had never gone in and done a second parotidectomy. She was worried about the scar tissue build up.  We were worried about Jim ending up with a bells palsy look.
 
So we sought a surgeon at the University of Pennsylvania. (DR. W.)  After the usual tests and scans Jim under went a second surgery on May 19th 2003. His drains were out on May 23rd. After presenting Jim's case to a medical convention it was decided that radiation therapy would be best. Jim's 1st round of radiation was on July 9th and ended August 26th 2003. After radiation Jim had a horrible time with pain. It eventually went away and was thought to be the nerves healing from all the trauma. Since then Jim has had the usual needle biopsy's,  PET , MRI and CAT scan done.
 
All had been fine until his latest PET scan with CT fusion done on October 11th 2004. On Monday October 18th we got 2 calls. The first call was regarding Jims scans. " The DR is concerned about a questionable lesion found on your thyroid. We need you to have blood work and an ultrasound done before your October 27th 2004 appt."  Needless to say we were stunned. The second call came from the primary's office who was calling with MRI results b/c Jim was having back pain. They said " You have 3 herniated discs, arthritis, and a mild case of spinal stenosis all in your lower back."  So Jim made the appointments for the  ultrasound and blood work. He is seeing some hot shot Temple neurosurgeon for his back tomorrow ( October 26th 2004). Then He see's DR.W on Wednesday about his thyroid results. Jim's fear and mine is that his back, legs, knees, joint pain is all caused by the cancer.
 
This whole ordeal has been a nightmare. After Jim's second surgery we were told he cant have surgery in that area again and radiation is one body part per life time. Also if it comes back it will travel down and not up. And that he'd have to go through clinical trials next. So if he has a cancer of his thyroid then hopefully they can remove it from the other side or front. But he cannot have radiation again. Now, I have been doing some reading and am wondering about radioactive iodine injections. I need to find out if that can be done even though he had regular radiation already. I wont know anything for 2 days. And even then we probably wont know for sures b/c he'll probably need to have a needle biopsy done. I will keep you updated.
 
Thanks again
Barbara in Philadelphia

 

Lisa

Received November 8, 2004

Thank you for the web-site. It is very insightful. I have just been diagnosed with a tumor on my parotid gland. I am scheduled to see a surgeon this Wednesday to have it removed. My doctor told me there is a 50 50 chance of it being cancer. I just want you to keep me in your prayers.
 
Lisa
Ryan, as told by his mother, Yvette

Received April 28, 2005

Thank you for this site, I've searched for information since my son had his surgery.

My son age 16, on March 5th, 2004 had a malignant tumor, mucoepidermoid carcinoma of the partoid gland removed from the left side of his face just in front of the ear. We choose not to go thru radiation, we felt the side effects would be far worse than the reoccurrence at that time. I have always second guessed our decision at that time. He has regular check-ups and at this time has no signs of reoccurrence, but like one story told, it's hard for him to live life with the black cloud, every lump, bump or illness your first thought is the cancer is back. Ryan's grandmother (my mother) died 15 years ago of breast cancer, I've read someplace briefly it could be related to Ryan's cancer in someway, would like to find more information on if the two are linked in anyway. This is all so greek to me and looking for any help and the odds of it reoccurring.
Any feed back would be of great help and appreciation.
Ryan's mom-Yvette
 

*I have not verified any of this information.  If you send me information, I reserve the right to edit it for length or content, or to refuse to post it.  If you object to how I chose to edit, I will remove it at your request.  I will also remove the information at a future date if you or your family requests.  I have no control over those who may obtain the information from this page, nor of what they may do with the information, so please use care when sending personal information.  I'm not trying to be harsh here, but I do think I owe it to you to set expectations up front so we understand what I'm offering to do and what your options are.

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