Previous Thread
Next Thread
Print Thread
#193069 09-21-2016 04:23 PM
Joined: Sep 2016
Posts: 3
Net Offline OP
Member
OP Offline
Member

Joined: Sep 2016
Posts: 3
I was recently diagnosed with this (intermediate grade, stage 1 or 2)- most likely started on the left parotid gland. I have radiation and surgery as options. I have no idea which one. I am trying to get a third opinion to help sort out all the pros and cons. If I have surgery and cancer is still present than I will have to have radiation anyways.
I havent really been able to firsthand experience with this type of cancer anywhere. Any tips on pros/cons of having surgery vs radiation? Or additional side affects should I have the surgery followed with the radiation? The surgery would take out the left superficial lobe and some nodes behind my left ear. Radiation would pretty much radiated that whole area - 6-7 weeks is what is recommended for me.


diagnosed 9-1-16
intermediate grade
mucoepidermoid carcinoma
researching treatment
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
We've had several members who have had MCC. I suggest reading posts and also on the main OCF site about discovery and treatments. You will learn tons of important info about your illness. This will make you a strong advocate for yourself.

Before you decide on which treatment plan is best go for a second opinion at a comprehensive cancer center (CCC) if possible. ts been proven patients treated at CCCs have the best outcomes. Using a team based approach where all the specialists work together has many advantages. I always recommend patients to get the very best medical team they can weather its 10 miles from home or across the country. If you are able to travel for treatment I think it would be worthwhile to at least check them out.

List of CCCs

There will be so many things to do before you begin treatments. Make sure to have a full blood workup done including thyroid levels (and for men also get testosterone levels). You may have problems years down the road with your thyroid. A blood test now ensures you will know what your regular baseline thyroid levels should be. Taking a pill a day to manage your thyroid isnt a big deal, but getting the baseline level is.

To prepare, if you havent already seen your dentist try to make an appointment right away prior to any treatments starting. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This can help prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings is all part of after care for OC patients.

Regardless which treatment plan or facility you select you will want to start paying attention to your intake now. Eat all you favorites now, desserts too. If you are slim or average build putting on a few extra pounds is a good idea. Almost all OC patients lose weight (some significant amounts) during their treatments. When a person has cancer they burn up calories at an increased rate. Your sense of taste will be affected no matter which treatment option you go with so start eating all your favorites now. You dont want go into this with any cravings. Your ability to eat normally may be compromised for a couple weeks if having surgery, with rads its usually more like a few months. OC treatments have some rotten side effects, this is why I stress eating now.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later. Down the road if you are overloaded with calls and texts you can "assign" someone the job of passing along updates for you. With having 3 children to care for, Im sure there will be tons of small things that can help you during any hospital stays or your treatments. Even taking the kids out to the movies or away for a day can be a huge help for parents going thru cancer and its treatments. Try lining up helpers to stop over and help out with the kids or to drive you to treatments. Its always best to over-prepare than to have to scramble when you arent feeling the best.

Hopefully I havent overwhelmed you with too much info. Dont worry, we will help you get thru everything. Hang in there!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2016
Posts: 3
Net Offline OP
Member
OP Offline
Member

Joined: Sep 2016
Posts: 3
That is all super helpful! Just had my dentist appt today.


diagnosed 9-1-16
intermediate grade
mucoepidermoid carcinoma
researching treatment

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5