Parotid Gland Cancer

ChristineMS

I am interested in hear from others who have been diagnosed with Acinic Cell Carcinoma or other Parotid Gland cancers.

mixleader

Parotid Gland Cancer
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.

Roger

Dan Garrett

parotid gland
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

Hondo

Dan Garrett said:

parotid gland
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

Hi Dan
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

Hondo

Hondo

mixleader said:

Parotid Gland Cancer
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.

Roger

Hi Christine
Sorry I can’t help with any ACC information but I would like to welcome you here to CSN.

Wishing you well
Hondo

Canuckie

ACC
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?

pitbull4me

Canuckie said:

ACC
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
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!

sidsalscar

ACC
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.

katenorwood

sidsalscar said:

ACC
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.

Hello !
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

dwills289

I was diagnosed a few weeks
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.

dwills289

Dan Garrett said:

parotid gland
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

Good morning, Dan...your
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.

ksallust

It was incidentally discovered that I had a pleomorphic adenoma on my parotid gland during an MRI I had for a different reason. It was benign according to the biopsy and I had surgery November 4, 2022 to remove it (1.8x1cm). It was nestled right against my facial nerve in the fork where the nerve bifurcates so surgery was tricky. The pathology results came back that the benign tumor had started to transform and approximately half of it had myoepithelial carcinoma cells. Low grade, low transformation rate, clear lymph nodes, clear margins, except the surgeon wasn’t able to get a margin in one spot because it was right against the facial nerve. He took some from the other side of the nerve and that was clear. I’ve had two radiology oncology opinions and I am getting differing recommendations on whether I need to have radiation or not.

wbcgaruss

Hello, ksallust, and welcome to the CSN H&N forum.

I will try to add some information here for you. What I have found is that opinions can differ and it is dependent on each individual, where and how the cancer was located and the extent of it I guess as far as spread or multiple places it could be probably side by side or close together at the original area.

The idea as best I can understand is after surgery they will sometimes follow up with radiation to mop up errant cancer cells which can't be seen and I would say they strongly suspect are there because they are not confident all the cancer was removed with surgery. So radiation gets any errant cancer cells left. I imagine they have used chemotherapy with radiation also in some cases.

So those are the tools available surgery, radiation, and chemotherapy used separately or in combination with one another. It all depends on many factors and your doctor's recommendation.

I have read of some cases where they have done surgery alone and gotten clear margins and did no radiation and it worked out fine as in my second cancer where a small part of my tongue was removed with clear margins and no follow-up was done. I also had a cancerous lymph node removed which wasn't encapsulated and had spread and follow-up radiation was recommended because of the chance of recurrence.

So you have had 2 opinions so far possibly a third would put your mind at ease. Do you have confidence in your doctors, which can be a factor for you?

Another thing that a lot of cancer centers and hospitals have is what they call a tumor board where multiple physicians will look at and discuss your case and you can be present and you would have more than one doctor's input and I believe between the group they formulate the best treatment option for your case and for you it would be is follow up radiation recommended or not.

You may want to ask your doctor if this is available for you.

You may want to check this site out--UF Health

https://radonc.med.ufl.edu/patient-care/information-for-patients/sites-of-treatment/head-neck-cancers/

I hope this helps, you may want to go to the H&N page and click on new topic in the upper right and start a new fresh posting of your own since this is an older one from 2011.

Wishing You the Best

Take care, God Bless-Russ