The ringing in the ear is still one of the worst side effects. At least it’s just one ear. The other side effect I’m not sure I mentioned enough is your teeth. Oh my poor poor teeth. I’m at that 2 year mark and more or less I think my teeth have suffered the most from radiation. The left side where the radiation was focused and cooked that saliva gland. I still get a little bit of dry mouth from time to time, but I think that is more from me not drinking enough water.
You know another annoying thing that I’ll mention just for this blog, every little thing I feel on the left side of my face makes me think cancer is back. It’s like cancer PTS or something. My left side of my face where the surgery was feels different. Sometimes I turn my head to far and it strains the scar area. Kind of like hitting your bruised arm on a coffee table.
All in all I’m finally at a point where I can look back and say it was only 8 weeks out of my life. Those daily treatments sucked, and the commute in rush hour really sucks. Lets just say I feel for that cancer patient in Orange is the new black. Its all a memory now and seems like its far enough back in my history to not sit on my mind everyday.
In that first year, find stuff to do to keep busy. I really wish I had more hobbies, but I have stayed really busy with work, and I’ve tried to get out more. You know take random 1 hour lunches to hop across town to see a friend. I think anything to help just speed up time that first year after treatment will work wonders on forgetting the day to day treatments.
I have just read your blog as it is really the only information around on what the radiation treatment will be like, so thankyou for sharing your feelings at what must have been a very difficult time for you. My 17 year old son has just had his right superficial Parotid gland removed after a diagnosis of MASC. The surgeon thinks they have all the cancer and the 14 surrounding lymph nodes were clear. We are just waiting to hear if the oncologist thinks radiation will be required. I have to say I really hope not as your experience does not sound very pleasant. I hope all is continuing well in your recovery.
Sue, I just read your post and am curious if radiation was recommended for your son. I had surgery in Sept. 2016. My MASC tumor involved the superficial lobe of left parotid. Tumor margins were negative. There was no involvement in deep gland. No lymph involvement. I met with radiation oncologist whom recommended against radiation at this time but rather serial survallence CT scans. My 3 month follow up CT was negative. Scheduled next week for 6 mo. Hope all is well with your son.
@Sue – I hope all is well with you son. My 21 y-o daughter recently had MASC and had to have surgery + rad + chemo. If you want to talk and exchange info, pls send me an email, phrl1601(at)gmail.com
Take care.
Hi,
I just found out I have masc, and I think it would be nice to talk to others that have personal experience with this rare cancer. If you don’t mind, I’d like to ask questions and get your thoughts…. I’m scheduled for surgery in 2 weeks.
Thanks for sharing.
Patti
pborden58@hotmail.com
Dx. In Sept 2016. Open to communicate with anyone with this rare occurring type of cancer jnupdal@riverviewhealth.org