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Mucoepidermoid Carcinoma in a 10 year old

kimnavarette
Posts: 19
Joined: Dec 2013

My 10 year old son was recently diagnosed with Mucoepidermoid carcinoma in the parotid gland. The cancer was found when he underwent surgery for the removal of a branchial cleft cyst, which turned out to be a tumor. We feel as though we are straddling two worlds here with treatment options. This is an adult cancer in a child. Pediatric oncologists at the University of Michigan have not treated this cancer in a child. Adult oncologists see the cancer on a regular basis, yet don't treat children.

 

We are trying to research as many treatment options as possible. Trying to decide if it is important to go to a facility that has treated a child with this cancer as even major cancers centers appear to treat only 1 case per year. Or is it better to pick a treatment center near home to keep life as normal as possible. Does treating one case per year give them an advantage? My son is a triplet and we also have a 15 year old at home. We will of course go anywhere we need to get the best care possible. We are currently at Mott Children's hospital at the University of Michigan for treatment. After the first surgery (partial parotidectomy) we were told they found cancer in the localized nodes and that he would need a complete parotidectomy and removal of all local nodes. We have been told it is high grade, stage 3. We are awaiting recommendations from the tumor board in treatment protocol. We were initially told they don't like to radiate kids under 16 if they don't have to because of the side effects. Now it looks like we will need to radiate due to grade and stage.

 

Anyone here with a Mucoepidermoid diagnosis in a young child? Did they do radiation? What cancer center did the child receive treatment from? Name of treating Dr? Anyone use proton therapy? Which center? Please, any help you can give us would be appreciated! We are trying to get up to speed as quickly as possible, but it is do hard to find good info on this cancer in a child. Hoping someone here can help!

 

Thanks!

Kim

Ladylacy
Posts: 491
Joined: Apr 2012

So sorry to hear about your son.  Cancer is horrible for anyone but I hate to hear about it in children.  I know nothing about this type of cancer but have you thought of St. Jude's Children Hospital since they treat everything for children.  

Wishing you and your family the best -- Sharon

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

Welcome to the board.  No one who has posted here in the last few years has exactly this situation, although MEC itself isn't rare on this board.  Your questions and concerns are completely understandable.  I've opinions on a few of them.  You are correct in that no one has collected a large series of childhood MEC cases, so in one way of seeing it, there are no "experts".  But there are other cases out there, and there is a small world literature which has developed around the topic.  What you should do, IMO, is chose your treatment physician because of his attention to the science of his specialty, rather than casting around to actually do treatment at some facility that has seen one or two cases before.  MEC is a known cancer; the fact that it is in a child won't represent a significant impediment to successful treatment. 

Here's a sample of the literature available on childhood MEC: http://www.ncbi.nlm.nih.gov/pubmed/23140879

Radiation, under the circumstances of the cancer you describe, is mandatory, not optional.  Doing the radiation planning will not be foreign to those specialists just because this is a pediatric case.

I'd be pretty comfortable staying right where you are for treatment.  One of the questions you are certainly permitted to ask your planning physician(s) is "is there an advantage to my child to traveling to MD Anderson or its equivalent for treatment."  You will get an honest answer to this question.  You can ask them the same regarding Proton therapy, although the answer to this may be mostly conjectural on anyone's part right now.

Sorry for the circumstances.  But you don't have to call all these shots yourself.  If you trust the people doing the treatment, ask them the same questions you've raised here. You'll get valid answers.

 

best wishes

 

pat

 

 

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

Sad to hear your situation. From my own experience, I was originally treated in my hometown of St Louis for SCC of mandible. When I had a recurrance, I was unhappy with options so went to the Mayo Clinic in Rochester. They consulted with MD Anderson to see if they felt proton therapy held any advantage over SBRT at Mayo for me. A decision was made for Mayo. That tumor is now gone but I have another. I am doing chemo in STL but at the direction of Mayo who came up with the plan. Then back to Mayo for another SBRT go round (5 days). I guess what I am trying to say is how three major centers, Mayo, MDAnderson and Barnes, have all worked together to come up with the plan they felt best for me. While I will be getting my chemo administered virtually across the street, Mayo made the recommendation for the concoction I will receive. Sorry you have these difficult decisions to make but know that the major centers do work together if you opt for another opinion.

Your son and your family will be in my prayers.

Candi

 

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

Kim, i don't have any answers but wanted to say I'm putting your son and family in my prayers.  I'm so sorry to hear this.  It is always harder to take when its a child.  you may want to try St. Jude's since they only deal with children.  I wish you the very best.  please keep us posted on his progress.

God bless you,

dj

 

robswife87's picture
robswife87
Posts: 179
Joined: Mar 2013

is one of the best. you have the option of Henry Ford which has a great cancer center also. Also check with Karmanos.

I can guarantee that U of M will consult other Cancer Centers around the country for consult on this. At the U of M i would make sure to speak to Dr. Eisbruch who is the leader in the Head and Neck radiation department. And Carol Bradford in the Otolaryngology Dept in the Taubman Center there. She is the leading oto oncology doctor in that dept.

Sandy

TracyLynn72's picture
TracyLynn72
Posts: 725
Joined: May 2013

of anyone with cancer, but especially a child!  ((HUGS))  I am still in the healing process of MEC (tumor, surgeries, radiation) and will keep your family in my prayers! 

denistd's picture
denistd
Posts: 508
Joined: Apr 2009

I think if you follow Pat's advice, you won't go far wrong. Denis

kimnavarette
Posts: 19
Joined: Dec 2013

Thank you all so much for the comments and the prayers! The moment when someone tells you your child's life it's in danger is not something easy to describe to others. I know you all understand this feeling of helplessness. I appreciate you taking the time to provide us with any info you have! We meet with Mott again on Monday.

bravelybeautiful
Posts: 1
Joined: Dec 2013

Hi Kim,

Thought you would be interested in this story. A 4 year old boy was diagnosed with tongue cancer in Ohio...

http://www.10tv.com/content/stories/2013/12/19/columbus-nationwide-childrens-day-of-giving-child-gets-new-tongue.html

corina secareanu
Posts: 1
Joined: Feb 2014

Hi KimI, I understand what you are going through. My son, 11 yearsolds was also diagnosed with mucoepidermioid carcinoma of maxilla, after being treated for a odontogenetic cyst. He had a he imaxillectomy back in December 2013. Unfortunately the tumour was not completely removed so there is another surgeryplanned for Thursday the 13th of February. Also I will have a meeting with theoncologist.   The plan is to have some radiotherapy. As far as I understand the proton therapy would be more efficient and less invasive over the traditional therapy. The proton therapy is not available in UK. Would you please share your experience with me? Any information would help to take the best decision regarding my son's care. Thanks,Corina

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

corina, i  haven't seen her on for a while.  try sending her a pm.  click on her name, scroll to the bottom of the page, click on send pm.  i think you'll have better luck that way.  very sorry to hear about your son.  praying all goes well in surgery and recovery.  God bless you.

dj

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

The effects of H&N radiation can be significant but doable. If proton therapy is an option, I would certainly investigate further. I believe proton therapy can definitely reduce the side effetcs.

God bless,

Candi 

kimnavarette
Posts: 19
Joined: Dec 2013

I haven't been in here in awhile. We flew to Houston Texas (MD Anderson) for a second opinion in January. We met with the Proton Therapy Center. Based on our research we decided that proton therapy was the best choice for our son. If there is a chance we can avoid secondary cancers later in life we had to take a shot! he has undergone 10 radiation treatments so far. We have not seen any side effects yet. He will undergo a total of 30 radiation treatments. My understanding is that it is important to pick a proton center that has been up and running for some time. They emphasized not to pick a brand new center. I will try to attach a link to a video that might be helpful to you. There are so many people at the MD Anderson Proton Therapy Center that are from other countries! We are constantly stunned at how many people come from around the world to have their children treated there! if there is any chance to get your child to a proton Center I would take that opportunity!

 

http://t.co/GX4Toqabru

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

Hello kimnavarette, 

First, I am sorry I didn't find your post sooner, but I do not come back to this site as much as I did during treatment. Second, I hate to have to welcome anyone else into the group of MEC survivors, especially a child, but now that he and you are here...hello and I am glad you found this site.  I tend to write a lot...so I am sorry in advance if this is long.  :)

I was diagnosed with MEC of my hard palate in 2010.  I underwent surgery to remove my tumor, which was about the size of a ping pong ball...it had grown into my sinus cavity.  I had no involvement of my nodes.  I then underwent 30 rounds of IMRT radiation.  I had looked into Proton therapy and based on the location of mine and that they had felt they had most likely removed the whole tumor during surgery they felt I would be better off with IMRT. Proton was my first choice and I am so glad that you are able to have it with your son!!!! My tumor was first low grade and then bumped up to intermediate grade.  my staging changed as well depending on clinical presentation vs. pathological presentation.  I had just turned 30 when diagnosed, with three small children at home.  Post treatment, I had my fourth child.

I don't know much about Proton except that the side effects are less, that it is a great option for children, and that it damages the good tissues less.  I will be praying that your son never has any side effects and that he goes through this easily...I will also be praying that he will be joining me at having No Evidence of Disease.  

If he does start to have difficulty swallowing or not wanting to eat.  I found that Boost High protein in chocolate was easy to get down and it gave me the energy to get through the day. I also would have milk and ScandiShakes (I had to have them in smaller doses than a packet...too filling). Also, having something to do every day kept me from sleeping the day away.  It was fairly late into my radiation before I started to have side effects.  Magic Mouthwash did wonders so I could keep eating.  I ended up eating a lot of overcooked Macaroni and cheese.  I also found that Stouffer's Swedish Meatballs were of a textural type that I could swallow better than others.  

I don't know if your son has/will need a feeding tube.  I can offer no help there.  I was able to get through without one, but only just barely.

If he develops sores in his mouth, good dental care and brushing his teeth will hurt, but it will be essential to having the sores heal faster.  I liked Biotene products.  gentle, effective, and they increased my saliva.

Having cancer is rough, being the caregiver to your child is rougher.  It was much harder for my mom to watch me and care for me daily during my treatments (while my husband was at work) than it was for me.  I had to get through each day and try to stay happy and optimistic, my mom had to watch me lose weight, lose my energy, worry if I was eating enough, sleeping too much, and if my skin was too burnt.  

If you read any statistics about MEC, please know a couple of things: children respond differently than adults...they are much more resiliant and a statistic is just a number...your child's cancer is unique to him.  His journey will be unique to him.  Your journey as his parent is unique to you.  The journey of his siblings will be unique to them as they watch him, miss him, question, doubt, get angry, get jeaous of the attention, etc.  This unique journey is one no one ever wants to take, but your and his attitude will affect how he gets through it.  I was determined to put a smile on my face every day, even when it hurt to smile...so I did.  There were days I wanted to scream, so I did, but as a mom, I also had kids that I had to show that even though I had cancer it wasn't going to change our relationship.  I would still get onto my kids when they did something wrong and my mom would get onto me when I didn't do something I was supposed to...like eat or drink enough.  Those days when she treated me like she usually did, when she didn't act like I was fragile...those are the days I remember.  Those are the days that made everything worth while.  My mom told me that there was nothing harder than to take a step back and making me do for myself when she could have taken over.  I am grateful for those moments when she didn't step in.  she still stepped in plenty...I still needed so much from her and my husband, but I remember those moments where I was treated normal much better than those moments when I was treated like a cancer patient.

It is hard to know that your loved one is not back to their old self the moment treatment is over...it will take time to heal...every minute of that time will feel twice as long as it did during treatment itself.

I am not on here much anymore, but I will be checking in on you and your son.  Please keep me updated on how he is doing.  Please feel free to ask any questions.  I will tell you what I know, or you can search for my previous posts.

I am big into HUGS....so I am sending you and each member of your family a giant set of HUGS!!!!  

ekdennie

 p.s. If you haven't set up a Caring Bridge site, it was a life saver for a cousin of mine when her son had brain cancer.  It allowed everyone to get updates without dozens of phone calls.

 

 

 

 

ValeIT's picture
ValeIT
Posts: 19
Joined: Feb 2013

Hello, in Italy in Pavia is a new center for proton therapy. 

Try to inform you if your health insurance covers the costs abroad. 

In Italy reimburse all costs if there are no specialized centers. 

Before we inaugurate this center patients could travel abroad with reimbursement of costs for medical care. 

I do not know 'how you organized your health care system, but it is good to inquire. 

Sorry for my english ... I'm Italian and I use the translator on line. 

You can watch here:

http://www.cnao.it/index.php/it/

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