I was recently diagnosed with mucoepidermold carcinoma of the left tonsil. I understand that this is unusual, in that most cancer in tonsils is classified as squamous cell carcinoma.

The path to diagnosis started with the appearance of a small lump in the area of my neck under the left jaw. A CT scan revealed a mass 3.4cm by 1.5cm. A fine-needle biopsy revealed what was initially classified as squamous cell carcinoma in the swollen lymph node. A subsequent PET scan identified the primary site as being in my left tonsil. Fortunately, no other activity was found.

The next step was a panendoscopy (inspection) of my mouth, throat, etc. - together with a tonsilectomy for both of my tonsils. (I'm early in the process, but the recovery from the tonsilectomy has been about as painful as anything I ever want to endure--but, I digress.) A biopsy of the left tonsil revealed a new diagnosis of mucoepidermold carcinoma vs squamous cell.

From what I have been able to learn, which is not much, the treatment is virtually the same for the two types.

The planned treatment program starts Feb 21st, and consists of seven weeks of radiation combined with a week's worth of chemo during weeks 1 and 5. I have already made arrangements for a PEG feeding tube to be installed 4 days prior to the start of radiation.

I have a pretty good idea of what I'm facing , but I am just starting to get my arms around the whole idea. If I did not KNOW that I have cancer, I would say that I was healthy and doing pretty well. I've learned an awful lot in a very short period of time, and quite frankly I'm starting to get pretty scared.

Many of my questions have been answered by the "Getting Through It Together" document.

I have NOT, however, been able to find anything about a diagnosis of tonsil cancer involving muceopidermold carcinoma. All the references seem to refer to tonsils and SCC. Can anyone help?

Any and all comments will be appreciated.

Len

Hi Len: I can't help you with your diagnosis because my tonsil cancer is squamous cell, but I did want to welcome you to this site, though I wish neither one of us had to be here. I am a newbie, too, only diagnosed a month or so ago. (A series of different diagnoses until the last biopsy and tonsillectomy revealed the primary tumor in the left tonsil.) And yeah, getting my tonsils out was the worse pain I have ever felt. I started radiation and chemo this past Monday. The chemo wiped me out but I am getting a little more energy back this weekend. Good luck in your search for answers. We are practically going through this together. I hope I can be of some help. -Michelle

Sorry we have to both meet like this, but we have to get thru it. I appreciate your response and will keep in touch.

A couple of questions:
Are you using Caphosol? I believe this is what they call
"magic mouthwash".

Are you using Radiaplex Rx gel? This I understand to be a
specialized radiation skin cream. Its purpose is to
minimize the effects of radiation burns.

Thanks and be well!

Len

Len welcome to OCF. Even though I have had SCC instead of your type of oral cancer, I can still help you. Your treatment will be the same radiation as what I went thru. Im happy to see you read the Getting Thru It Project. That is one of the most important things on this entire forum that you could read. It is a great way to prepare for what you will be facing soon. Do your best to eat everything you can now. Your sense of taste will be changing for a few months.

Magic mouthwash has several variations, its presciption medication not over the counter. The brand Caphosol is not magic mouthwash! The type my doc prescribed to me was made of malox, benedryl and lidocaine. To use the magic mouthwash you swish it in your mouth for about 20 seconds and then spit it out. This will numb your mouth for about 15 minutes, long enough to enable you to eat with a sore mouth.

Best wishes to you as you prepare to begin treatments.

Len, adding my welcome and sorry you're here. But it's a great place for support and knowledge and everyone is wonderful.

I was prescribed Caphosol too and used it diligently. I suppose it helped but frankly I don't know for sure. I can assume it would have been worse without it. I do know that's it was very expensive.

I never heard the term magic mouthwash until I got on this forum a month or so after my treatment. I was prescribed viscous lidocaine for mouth numbing. It was only partially effective, so maybe the MM is a better bet. But you're getting the PEG tube so this won't be as pressing an issue for you - although please be sure to drink lots of water. I'll let those who've had the PEG offer you guidance on that, ditto on the specific cancer type you have.

There are different makes and models of creams and gels for radiation burning. I don't happen to be acquainted with Radiaplex. I used Miaderm, and then toward the end when the burns were more severe Silver Sulfadiazine, which is great stuff.

Being scared is normal, I know I don't have to tell you that. But it sounds to me as though you have a good team in place and you're doing everything right. We are all here to support you.

Be sure you ask for any pain medication you need. Don't skimp on that! Also anti-nausea meds. My doc put me on Zofran right off the bat but I found it never did much for me. Compazine was eventually something that I found effective.

You've been to the dentist, right?

Courage - you'll get through this!
David2

PS eat eat eat eat!

Christine, thanks for clarifying the difference between "magic mouthwash" and Caphosol. I need to find out more about "magic mouthwash", it sounds like it will be a very important aid.

Thanks and be well,

Len

Hi Len, You have found the perfect place with the best people to help you through your journey. I don't post much anymore, but I check in daily to keep up with everything. Your post caught my eye because of the info you posted. We live in Sacramento and have been married 42yrs with one daughter and two grandgirlies (our pet name for them.) Richard finished treatment Feb 2009, so he's two years out. The treatment was the most difficult and trying time for both of us. You'll have to dig deep and endure the treatment, while your wife will watch you go through it and suffer because she loves you. It will be painful for her as a caregiver and you as the patient, but it will bring you closer. Please come to this forum and ask questions. We are all here to help. You can stay informed and know what questions to ask and how to handle problems that come up during treatment.
Richard had a Peg put in before treatment and was glad for it. He continued to drink milkshakes and water through the treatment.
We were lucky that he healed up quickly and we were able to resume our "new normal" life. We started back hiking in the Sierras and Yosemite, most recently Half-Dome. We still get nervous before check-ups but the farther out we get it's a little easier.
So, there is so much to look forward to and to live for. You just have to get through the treatment and a few weeks after to emerge from the tunnel.

If you ever want any info or feedback, you can e-mail or call us. I would be happy to answer any questions your wife might have.

Best of luck...Geri

Ken,

Radiation therapy can damage the thyroid, so it is a good idea to get a baseline TSH blood test before your treatment begins. Many of us take synthroid after RT because of this.

Welcome to OCF the best source of info on oral cancer! Good luck with your treatment.

David, thanks for the additional information. I've made notes regarding the drugs and creams you have mentioned. It is sincerely appreciated.
I just found out that I have NOT been tested for HPV. My ENT did not think it was associated with MEC. Should I press for an HPV test? From what I've read, a positive result does not change the treatment, but can mean a slightly better prognosis. Do you agree?

Got the dentist covered, that is really where all this started.


Thanks and be well,

Len

Thanks, Susan. I added that thought to my constantly growing list of questions to ask.

Thanks again and be well!

Len