Newly diagnosed

bashkier

I have just been diagnosed with acinic cell carcinoma of the left parotid gland. 

I first noticed the lump on the left side of my neck about 2.5 years ago and it has slowly been growing and is now 3-4cm in size.

I had a doctor look at it in Jan 2017 and he put me on some steroids and said that should solve the problem. 

In Dec I went and had it looked at by another doctor - who sent me for an ultrasound, then a CT scan w/contrast, then a FNA and now the biopsy result.

I am researching what doctor and hospital to use for the surgery. From what I am reading the facial nerve and recurrences are things to worry about with this type of tumor.

Has anyone got any input regarding going to the Mayo Clinic in Rochester for this? 

 

 

bashkier

Also - what would anyone who

Also - what would anyone who has had this diagnoses suggest? The 'if-I-knew-then-what-I-know-now' type of stuff to look out for? Thanks! 

Feeling somewhat overwhelmed with all this.

Mom68

Welcome

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

bashkier

Hi Mary -

Hi Mary -

Thanks for the informative reply. Am feeling a bit overwhelmed and depressed right now - especially as I am far away from home and family and friends with not too much in the way of emotional or physical support here - whilst I am providing all of this for others.

Yes, surgery is recommended and they won't know about radiation until they do the surgery. So far the lymph nodes appear ok on the CT Scan but was told they would biopsy them around the tunor during the operation. Was told is low grade and probably stage 1. The facial nerve issue scares me - along with the fact that these seem to recur.

 

Luckily I have healthcare. I like your notebook idea. I am also a file and note keeper. I will start to put together my list of further questions to ask the surgeon.

regards,

K

HopefulInNM

I went to Mayo Clinic in

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 wife

Surgeon

K,

Did you get any referrals for a surgeon??  My husband ended up having carotid artery surgery, although unlike your's.  Just know you need someone that has done this specific type of surgery before - quite specialized.

Wishing you the very best,

Crystal

Mom68

Agreed about specialist recommendation

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.