Newly diagnosed

Hi bashkier! Welcome to the club we all never wanted to join. Now that you are here, please know that you are in very good company. The people on this site are fantastic and very supportive. 

I had to look up your type of cancer, and realized it is a type of salivary gland cancer. I had Mucoepidermoid Carcinoma (MEC), had surgery to remove and am now cancer free. My cancer was located on the roof of my mouth. The "great" thing (great is a word I use loosely here) about salivary gland cancers is that they are usually slow growing. Now that you know you have the cancer, just remember to breathe. Get a good plan together with your doctor and surgeon, and ask tons of questions, have further testing done if needed, and take notes. Have someone go with you to the appointments as well. I'm a good note taker, so I usually brought a notebook with me and scribbled away. I got all the test results as well, and have them in a huge envelope along with the notes. Once I got home, I'd type my notes into a word document, and then copy and paste definitions of terms that I wasn't familiar with. Yes, folks, I am that OCD! :-) My surgeon was thorough. Just when I thought we were done with tests and were moving to schedule surgery, she'd suggest another test. Since you do have cancer, your insurance might even approve of a PET scan...which is a 10 to 12 thousand dollar test. I had one done, from the head to mid thigh, and it showed one spot on my breast, which then was tested and deemed negative for cancer. Once my surgeon was comfortable with the fact that the only cancer I had was in the mouth, then she proceeded to schedule surgery. 

As for the surgery, I woke up with nausea and a bloody nose. The surgeon had to take bone from the roof of the mouth as well, so the roof of my mouth had no skin. I can't speak about what it will be like for you due to the parotid gland being involved. I'm sure others on here can speak about the parotid surgery process. My surgery was a day surgery and I was back home in my own bed later that evening. One thing I'd make a part of my plan with the surgeon is what are they going to do to preserve the nerves that surround the parotid, and will there be any plastic or reconstructive surgery involved. And if it is involved, what are they going to do and how will they do it. And if they aren't going to do reconstructive surgery, then why not. And have them justify it to you either way. I just feel that knowledge is empowering. However, you do what is right and comfortable for you. 

Is surgery what your doctor is recommending? Or are they recommending surgery plus radiation/chemo? Have they staged your cancer? Mine was low grade, T1N0M0. That means tumor stage 1, no nodes and no metastasis involved. 

Warmest Regards, Mary

I went to Mayo Clinic in Rochester for SCC  of the tonsil, T2, N2a, M0 HPV+.  I had surgery there in July 2017, and chemo + radiation there in August 2017.  I am part of a clinical trial at Mayo. I thought the care there was excellent, very patient centered.  They are very detailed oriented and I think that is important.  The ENT department there is highly rated and I really liked my surgeon, Dr. Eric J. Moore,  and oncologists.  I would highly recommend Mayo.  

I felt very overwhelmed in the beginning, lots of information, lots of anxiety.  Hang in there.  It will get better.  Once I settled on where to go and got going on my treatment I felt much better mentally.  

Getting cancer sucks but there are also gifts like increasing your appreciation of the little things.  It has made more mindful of all the blessings I have.  

I wish you all the best. 

Caregiver, that is a great tip! Definitely go to your primary, and talk with your current doctor who diagnosed you. Get that specialist recommendation. The initial surgeon who removed the growth prior to biopsy personally knew and recommended the surgeon who removed the rest of the cancer and came up with the treatment plan. So, I had a great recommendation from someone who was also great. The surgeon also had a great reputation as well, and she and I worked well together. That soooooooooooooooooo helps get you through this.

As for nerve issues surrounding the parotid...surgery techniques have come a long way since the first surgies of its kind. Find that specialist, and they'll know what to do and how to handle it. 

Do you have a support group you can attend in your area, since you don't have much support there? That would be something to look into. 

Also...please remember...this type of cancer is SLOW growing. You have time to find your surgeon, time to make a plan with your doctors. Stage 1 is so much better than stage 2. You can do this. We all deal with the "what if it comes back" type of thinking. I did the same thing. But you can only deal with today. If you think about the "what if's" then that will drag you down. 

You've got this. You are here, getting support and answers. Keep on planning and asking questions. We're here fo you.