I am interested in hear from others who have been diagnosed with Acinic Cell Carcinoma or other Parotid Gland cancers.
I was diagnosed with parotid gland cancer in May of last year. Mine, unfortunately, was ductal cell which is very rare and very aggressive. And, as if that were not bad enough luck, mine spread to my lungs and spine. I hope and pray that yours is much more controllable than mine.
Sorry I can’t help with any ACC information but I would like to welcome you here to CSN.
Wishing you well
I haven't been on this discussion board in a long time but I hope I can give you some information you are looking for. September 2009, I thought I had a sinus infection that would not go away. After a scheduled visit with my primary physician because of swelling below my right ear he scheduled an ultra sound 2 days later. The ultra sound was inconclusive and an appointment with an ear nose throat was scheduled for a fine needle aspiration that also came back inconclusive. He then scheduled a small biopsy on my parotid gland and it came back positive and I was diagnosed with squamous cell carcinoma in November 2009. After a tonsilectamy (2 days before Thanksgiving:( , and an exam by a dermatologist for possible skin cancer,a primary source was not discovered. After a pet scan and consultations with my ear nose throat doctor ( he ruled against surgery because of the location),my radiation and chemotherapy doctors they decided on the best treatment plan.
Beginning in December 2009 I began Chemotherapy (5 treatments) with Cisplatin being the lead chemo drug with 2 other chemo drugs every three weeks. Cisplatin is pretty rough but I never got nausea. In March I began 35 radiation treatments, 5 days a week for 7 weeks. After treatments my pet scan was clean and I have had a CT every 6 months since then with all being clean.
My primary physician told me he has a patient that had the same cancer 17 years ago so that gives me hope that I got this licked. I also have a friend who had this cancer and has been cancer free for 10 years now. I will check back now then if you want and answer any other questions you may have. I hope this information is helpful. God Bless
Sound like you been through a pretty rough ride with treatment and doing well. Glad you are checking in and helping, take care my friend
Good morning, Dan...your post gives me hope; I was diagnosed with a similar cancer, (albeit more advanced) a few weeks ago, and am scheduled for surgery (parotidectomy and radical neck dissection) in a couple of weeks, with a treatment regimen similar to yours (seven weeks of radiation with concurrent weekly cisplatin). I have been an artist and craftsmen most of my life (I just turned 60), and my wife and I work together as (amateur) artist-blacksmiths (my wife is an MD, I am a medical technologist), and the prospect of losing the use of my right arm has me a little concerned (actually, scared out of my wits, and extremely depressed) - I plan to bust my butt doing PT, I may have to switch up and try to retrain my left hand and arm. I am really pleased to hear of your success, and find it inspiring. Thanks for posting this.
I was just diagnosed with acinic cell carcinoma in December of 2011. I am still trying to figure out what to do next. I was thinking that radiation was the way to go, but the radiation oncologist wants more surgery. My second opinion also wants me today more surgery. During the initial surgery my ENT removed only the tumore and left the parotid gland in place, now they want it to all come out to see if there is cancer elsewhere. I have no idea what to do. How about you? surgery/radiation?
I was diagnosed in April 2010 with ACC of the parotid. Had surgey to remove that same month and started radical radiation that May(m-f for 7 wks)and radical chemo once a week for 35 wks the end of May 2010.I also tested positive for the HER2 Receptor and had 54 weekly treatments of Herceptin added to my chemo regiem. I have been cancer free since June 2011.
Granted, I was very sick and still am unable to work a full time job(thyroid was whacked from radiation) or even a good part time job for that matter. I have extreme fatigue, anxiety and depression most days it is all I can do to get out of bed and take care of my kids. Thank god for family!
It is a very difficult time having to make decisions that we have no idea of the correct way or outcome. Good luck!
I had left ear pain, especially when I would eat (i.e. when salivary glands triggered). A couple of rounds of antibiotics for ear infection didn't help and my GP sent me to an ENT. No external mass, and he admits that he almost didn't bother, but sure enough an MRI picked up a 2cm tumor. Dr. reassured me that it was very unlikely to be cancer, but should be removed either way. Had a parotidectomy in July 2009. While in there, he saw another smaller (1cm) tumor closer to my ear (the larger tumor was closer to my brain stem, not where the pain was, and did turn out to be benign). The smaller tumor was ACC. Because it was so close to my skin, he couldn't get a clear margin without me needing skin grafts, so I did two months of radiation in the fall of 2009. Radiation was really tough - neck burn, tongue ulcers, nausea, yucky or no sense of taste, hair loss, fatigue. I hated it. I've had an MRI each year since and remain cancer free, though. I have continued numbness and sensitivity at the surgical site, but it does improve a bit over time, and I haven't had any issues with dry mouth or real pain. Discomfort sometimes if I forget and yawn too big or take too big of a bite of something. And I have these little holes at the top of my ears, kind of like a little sinus opening, and the left one leaks whenever I eat. It's kind of funny.
I am only 34 now and so I worry about secondary cancer from the radiation down the road. I'm grateful for my body's sensitivity - if I hadn't felt the pain it could have grown a lot bigger before I noticed it and had a chance to metasticize. Dr. took out 11 lymph nodes and they were all cancer free. I'm also grateful for the benign tumor that got them to operate in the first place, if it hadn't been there they wouldn't have found the ACC. So I feel pretty lucky.
So that's my story. Wish I'd known about this site when I was in the thick of it! Nice to connect to others who've gone through it.
Yours is an inspirational story ! Thank you for sharing it ! I have adcc...I have to remember to add the D...some refer to mine as ACC...not the same cancer. adenoid cystic carcinoma. Mine was in the submandiblar gland and still lingering. You are very welcomed aboard here, and please continue to post ! I think you can be a big lift up for others ! Katie
I was diagnosed a few weeks ago with a squamous cell carcinoma which appears to have originated in my right parotid, but has metastasized to the lymph nodes of my neck - I am scheduled for a parotidectomy and radical neck dissection in a couple of weeks, to be followed by radiation and chemo.