Hi. I am a 29 year old who was just diagnosed with mucoepidermoid carcinoma of a minor saliva gland. I had a 1cm mass on the floor of my mouth that was removed 2 weeks ago. My doctor is now recommending a neck dissection to determine if there is any lymph node involment.
Wecome to the board Mellay, you did not say if you have started your Chemo /radiation. You have a ways to go in your fight if you were so recently diagnosed.
Our first and most important question we ask of newcomers is " are you going to a major, comprehensive, cancer center?" If not then please do before you go any further in your treatment.
Please take the time to read the information section of the site, the advice is invaluable.
Try and give us a little more information about your treatment and diagnoses and we shall try to help as much as we can.
Take care
Marica
I am being treated at Clarian Health in Indianapolis, which includes the IU school of medicine. I have been told by other doctors that my doctor is one of the best in Indiana. That makes me feel a little better. I have not started chemo or radiation. The surgery will include shaving part of my mandible to test for any cancer. My doctor is doing the neck dissection in hopes that it will come back clean and I will not have to have radiation. Right now, we are just waiting on insurance to approve the surgery. My doctor thinks that we caught the cancer very early but this is still very hard to deal with.
Mellay, this does not sound like a comprehensive cancer center to me. Before you do anything else please go to a cancer center with a team of doctors specializing in oral cancer treatment and specializing in radiation therapy, chemo therapy, cancer surgery, and include all of the other specialists used in treating this disease.
Have you had any CT scans or PET scans that indicate a "hot" area in your neck? Is there a reason the doctor thinks your cancer may have metastasized to your lymph nodes? Surgery in hopes that it comes back clean is a pretty radical approach to this disease without any clinical evidence of a problem.
I strongly suggest you get a second opinion at a comprehensive cancer center.
Actually, I had surgery on my neck even though there was no evidence of nodal involvement from a CT scan or physical exams. I think because there is such a high chance that there can be "occult" neck involvement, the aggressive approach these days is to recommend selective neck dissection anyway. At least that's what my ENT said and what I have read in a couple of articles.
But, Mellay, even if the neck dissection comes back clean, there are other risk factors that can be determined from the pathology report on the tumor that might indicate you should have radiation anyway (this is my case). It's for that reason that it is really worth it to go to a comprehensive cancer center, at least for a second opinion.
There are really two windows for getting a second opinion. The first is before any surgery or anything begins and the second is after surgery when you get the pathology report on the results. If you don't go before the surgery, then it is worth checking with a comprehensive cancer center in that second window about what, if any, treatment is needed after surgery. I would recommend doing this even if your doc says no further treatment is needed. At a CCC they may be aware of some risk factors your doctor is not aware of (also what happened to me sort of).
Kirk,
I know that we like to use the "get thee to a comprehensive cancer center" mantra and I use it myself, but I do take the time to research whether a person is actually already at one and not further complicate their fear and confusion. Clarion Health partners is part of a "teaching cancer hospital program" with the American College of Surgeons. They have a partnership with IU which is listed in the NCI site as a "cancer center".
Mellay, I am impressed with your self advocacy and knowledge, I know from personal experience that the more knowledgeable a patient the better the survival statistics and I also read it in Lance Armstrongs book this morning (p97) "Every Second Counts".
The following is a link to the NCI cancer center description and how that differs from a comprehensive cancer center.
http://www3.cancer.gov/cancercenters/description.html
Hello Mellay, Welcome to our world. I am sorry you have to deal with this kind of thing.
If you could elaborate on what you have been told about your diagnosis I'd appreciate hearing about it. Mucoepidermoid carcinoma is rather uncommon and it has characteristics that differ from the type of cancer we usually hear about (Squamous cell carcinoma).
Backing up Gary on the comments, I'd like to add; We should also refrain from giving what seems like medical advice (since we for the most part aren't experts). In this case, the entire process that Mellay will be going through may be similar but not necessarily the same as what many of us are going through.
Mellay
You will find that on this board some of the members are really knowledgable about the scientific/medical aspects of this disease. Others ,like myself, are more in the cheering section, here to help keep up your spirits when you are feeling down.
Don`t be put off when it appears there is a little family squabble going on, it does not mean a thing.
Everyone here will have your best interests at heart ... even when they do not altogether agree on a particular issue.
Take care and keep in touch.
Marica
Thanks to everyone for responding. Clarian is a teaching hospital but also a CCC.
The cancer I have is one of my minor salivary glands. The prognosis for low grade is good, high grade is poor. I am at the intermediate grade so it can go either way. My doctor is being very aggressive because of my age. The neck dissection will tell if I need radiation to my neck or not. My surgery is Monday so wish me luck!!
Sending you good thoughts of clean lymph nodes.
Nelie
Hello, I'm Edd. New dx, ca of base of tongue with mets. Just had neck surg. 10 days post op, doing fair I guess. Minimal pain but trouble swallowing and a lot of sputum. Wife just had new dx of breast ca, we like doing things together.
Hi Edd, Sorry for the delay in coming back to your post, but you came in at the tail end of a thread and I think you nearly got missed.
Welcome, sorry you had to join us, hope your neck is healing well, me and my husband like to do things together too, he has prostate cancer. I hope both of you were dx'd early so he outcome will be good for you both. Now you have found us please stay around and keep us updated..
Sunshine..love and hugs
Helen
Edd....I am afraid that people will not find you if you add your introduction to the board at the end of someone else's thread. I'd like you to post again (starting a new topic) on the introduce yourself board and tells us more..... and how we can help you. Clearly you have something good going for you, a strong sense of humor. I and all of the OCF board posters wish you and your wife a quick and successful journey through treatments and a rapid return to a healthy and normal life.
thanks, Brian and Helen. I'll take your advice and start a new thread. Edd
Yes I'm seeing what Marica means....how about those family squabbles???????.....I see them more and more. Don't you think that would "put newcomers off" a bit? I know that I don't post often b/c of this....just do my research and ask quick questions.....but I think that is the best thing about the forum anyway! So thanks to all those that continue to help me and my wonderful husband!
Michelle G.
I also am a new member, but not a new cancer patient. I was diagnosed with mucoepidermoid carcinoma 8 years ago and just recently found this site. Unfortunately, I still have lots of questions and few answers. Even the information page for mucoepidermoid carcinoma has been down since I discovered this site.
I just started surfing the chat boards to try this way to find out more about this cancer. If I find nothing else out...maybe the fact that I am a survivor after 8 years will be an encourager to you, Mellay.
Shannon J