parotid tumors

b4gving

My mom has just been diagnosed with 2 parotid tumors, 1 that is 8cm and the other is 13cm. We go Friday to an ENT surgeon. I would really like to hear from anyone out there that has had this cancer. Thanks. sampsonlyn@aol.com

beany

I am a 21 year old survivor of asinic cell carcinoma (parotid gland cancer). I was diagnosed in 1998 after my doctor tested the lump by my ear. I had immediate surgery, and the cancer was removed completely. I have had two other surgeries, however, because the scar tissue after surgery often appears and feels as though the cancer has recurred. I am lucky not to have had radiation and chemotherapy... I had a complete parotidectomy recently (removing the entire gland), and to be honest, it wasn't that bad! I thought the surgeries would cause much more discomfort than I have felt. The only side effects have been occasional pain when scar tissue presses against nerve endings. What else would you like to know? Tell you mother to stay positive!!!!

dkeats

I have some information about parotid tumors.
I was diagnosed with muco-epidermoid cancer of the parotid (Left side) 6 years ago. They removed it and I had to do 7 weeks of radiation becuase it had gone to my lymph nodes and my brain stem. They didn't do any chemo becuase they said chemo had no effect on this type of cancer. I think you probably know that this kind of cancer is pretty rare. Mine was a high grade stage three. The side effects from the radiation were not too bad...dry mouth, sore gums and burnt taste buds so everything tasted awful. This past May I had a reoccurance of this cancer. It was in my lymph nodes, mastoid muscle and had crossed over to the other side of my neck. I had a classic neck dissection on both sides (incision from ear to ear). The problem was that I had already had my life time dose of radiation so they didn't know what to do about treatment after surgery. They consulted a specialist in Chicago and decided that they had to radiate me again if I had any chance of survival. They had also learned in the past 6 years that if you did chemo along with radiation, that the radiation had better results. I must say it was a pretty tough treatment. Week one was an infusion of taxol, then F5U that I had to have 24/7 for 6 days (wore a pump that was connected to my port). During that time, I had radiation twice a day. Then the next week I would have nothing. Then it started all over again. I did this for 10 weeks total. I also had a feeding tube which was a life saver. I couldn't eat anything and my throat and tongue were burnt.
I had to delay one week of treatment in week six because my skin was so burnt on the outside that I had blisters and had to use "salvidine" which they prescribe for burn victims. This all sounds awful but it wasn't so bad. It's been 6 months since my last treatment and things are looking well. My biggest side effects are from the surgery. They had to take out the mastoid muscle on my left side so I have a very weak neck and arm. Plus stiffness in my neck and shoulders. I was on the feeding tube for 5 months and there are still things I can't eat. They first things I could eat where cheese and chocolate! I still can't eat anything with tomato or citric acid (like fruits and some veggies). They say my condition might not change becuase I've been radiated twice what they consider acceptable.
I'm telling you all this not to scare you, but to let you know that I survived it not once but twice so I know your Mom can do it. Maybe something in this message will help and give you information to ask your doctors. I wish I could have responded sooner. You are probably well on your way in treatment. If you have any questions, don't hesitate to ask! Best of luck, Marilyn

beany

dkeats said:

I have some information about parotid tumors.
I was diagnosed with muco-epidermoid cancer of the parotid (Left side) 6 years ago. They removed it and I had to do 7 weeks of radiation becuase it had gone to my lymph nodes and my brain stem. They didn't do any chemo becuase they said chemo had no effect on this type of cancer. I think you probably know that this kind of cancer is pretty rare. Mine was a high grade stage three. The side effects from the radiation were not too bad...dry mouth, sore gums and burnt taste buds so everything tasted awful. This past May I had a reoccurance of this cancer. It was in my lymph nodes, mastoid muscle and had crossed over to the other side of my neck. I had a classic neck dissection on both sides (incision from ear to ear). The problem was that I had already had my life time dose of radiation so they didn't know what to do about treatment after surgery. They consulted a specialist in Chicago and decided that they had to radiate me again if I had any chance of survival. They had also learned in the past 6 years that if you did chemo along with radiation, that the radiation had better results. I must say it was a pretty tough treatment. Week one was an infusion of taxol, then F5U that I had to have 24/7 for 6 days (wore a pump that was connected to my port). During that time, I had radiation twice a day. Then the next week I would have nothing. Then it started all over again. I did this for 10 weeks total. I also had a feeding tube which was a life saver. I couldn't eat anything and my throat and tongue were burnt.
I had to delay one week of treatment in week six because my skin was so burnt on the outside that I had blisters and had to use "salvidine" which they prescribe for burn victims. This all sounds awful but it wasn't so bad. It's been 6 months since my last treatment and things are looking well. My biggest side effects are from the surgery. They had to take out the mastoid muscle on my left side so I have a very weak neck and arm. Plus stiffness in my neck and shoulders. I was on the feeding tube for 5 months and there are still things I can't eat. They first things I could eat where cheese and chocolate! I still can't eat anything with tomato or citric acid (like fruits and some veggies). They say my condition might not change becuase I've been radiated twice what they consider acceptable.
I'm telling you all this not to scare you, but to let you know that I survived it not once but twice so I know your Mom can do it. Maybe something in this message will help and give you information to ask your doctors. I wish I could have responded sooner. You are probably well on your way in treatment. If you have any questions, don't hesitate to ask! Best of luck, Marilyn

Marilyn,

Just wanted to tell you that I am proud of your strength and positive attitude. You are truly an inspiration to me (since you survived a much more severe form of porotid gland cancer than I). I hope all is well with you. I'll keep you in my prayers.

Jaylene

xray

dkeats said:

I have some information about parotid tumors.
I was diagnosed with muco-epidermoid cancer of the parotid (Left side) 6 years ago. They removed it and I had to do 7 weeks of radiation becuase it had gone to my lymph nodes and my brain stem. They didn't do any chemo becuase they said chemo had no effect on this type of cancer. I think you probably know that this kind of cancer is pretty rare. Mine was a high grade stage three. The side effects from the radiation were not too bad...dry mouth, sore gums and burnt taste buds so everything tasted awful. This past May I had a reoccurance of this cancer. It was in my lymph nodes, mastoid muscle and had crossed over to the other side of my neck. I had a classic neck dissection on both sides (incision from ear to ear). The problem was that I had already had my life time dose of radiation so they didn't know what to do about treatment after surgery. They consulted a specialist in Chicago and decided that they had to radiate me again if I had any chance of survival. They had also learned in the past 6 years that if you did chemo along with radiation, that the radiation had better results. I must say it was a pretty tough treatment. Week one was an infusion of taxol, then F5U that I had to have 24/7 for 6 days (wore a pump that was connected to my port). During that time, I had radiation twice a day. Then the next week I would have nothing. Then it started all over again. I did this for 10 weeks total. I also had a feeding tube which was a life saver. I couldn't eat anything and my throat and tongue were burnt.
I had to delay one week of treatment in week six because my skin was so burnt on the outside that I had blisters and had to use "salvidine" which they prescribe for burn victims. This all sounds awful but it wasn't so bad. It's been 6 months since my last treatment and things are looking well. My biggest side effects are from the surgery. They had to take out the mastoid muscle on my left side so I have a very weak neck and arm. Plus stiffness in my neck and shoulders. I was on the feeding tube for 5 months and there are still things I can't eat. They first things I could eat where cheese and chocolate! I still can't eat anything with tomato or citric acid (like fruits and some veggies). They say my condition might not change becuase I've been radiated twice what they consider acceptable.
I'm telling you all this not to scare you, but to let you know that I survived it not once but twice so I know your Mom can do it. Maybe something in this message will help and give you information to ask your doctors. I wish I could have responded sooner. You are probably well on your way in treatment. If you have any questions, don't hesitate to ask! Best of luck, Marilyn

HI MARILYN!

GLAD TO HEAR YOUR ON YOUR WAY UP THE LADDER AGAIN. MY FRIEND WAS JUST DIAGNOSED WITH ADENOID CYSTIC CARCINOMA OF THE PAROTID GLAND. HE HAD A TOTAL DISECTOMY OF THE GLAND. AFTER TWO MONTHS OF DELIBERATION AS TO WHETHER THIS WAS BENIGN OR MALIGNANT I THINK YOU CAN GUESS THE OUTCOME. THIS 34 YEAR OLD MALE OUTLIVED LEUKEMIA AS A BOY OF 4 YEARS OLD. THEN AGAIN, LIKE YOU, YOU TAKE THE TREATMENT BECAUSE THAT IS YOUR BEST OPTION, EVEN THOUGH IT CAN RE-ACTIVATE THAT LEUKEMIA. THERE IS A TREATMENT CALLED NEUTRON BEAM THERAPY. THEY SAY THEY HAVE 100% SUCCESS WITH LOCALIZING THE TUMOR AND TREATING IT, OR THE CELLS. HAVE YOU HEARD OF THIS OR IS THIS THE TREATMENT OPTION YOU EXPERIENCED. WE ARE ASSUMING THAT THIS IS A STAGE 4 CANCER BECAUSE OF THE SIZE OF THE MASS, BUT HE HAS YET TO BE STAGED. ANY INFO WOULD BE GREAT. KEEP FIGHTING!

jackie7964

xray said:

HI MARILYN!

GLAD TO HEAR YOUR ON YOUR WAY UP THE LADDER AGAIN. MY FRIEND WAS JUST DIAGNOSED WITH ADENOID CYSTIC CARCINOMA OF THE PAROTID GLAND. HE HAD A TOTAL DISECTOMY OF THE GLAND. AFTER TWO MONTHS OF DELIBERATION AS TO WHETHER THIS WAS BENIGN OR MALIGNANT I THINK YOU CAN GUESS THE OUTCOME. THIS 34 YEAR OLD MALE OUTLIVED LEUKEMIA AS A BOY OF 4 YEARS OLD. THEN AGAIN, LIKE YOU, YOU TAKE THE TREATMENT BECAUSE THAT IS YOUR BEST OPTION, EVEN THOUGH IT CAN RE-ACTIVATE THAT LEUKEMIA. THERE IS A TREATMENT CALLED NEUTRON BEAM THERAPY. THEY SAY THEY HAVE 100% SUCCESS WITH LOCALIZING THE TUMOR AND TREATING IT, OR THE CELLS. HAVE YOU HEARD OF THIS OR IS THIS THE TREATMENT OPTION YOU EXPERIENCED. WE ARE ASSUMING THAT THIS IS A STAGE 4 CANCER BECAUSE OF THE SIZE OF THE MASS, BUT HE HAS YET TO BE STAGED. ANY INFO WOULD BE GREAT. KEEP FIGHTING!

Hi, Xray! I have just finished with treatment (surgery only, was able to skip the radiation due to stage and type of cancer--Stage 1 mucoepidermoid, low grade, in the minor salivary glands of the tongue), but I do recall while doing my "homework" about this type of cancer, that neutron beam radiation had the best success rate, followed by photon beam (which also had an excellent success rate). Not sure about the stats for your friend's particular cancer, but that was what I read about mine. Didn't know that they had that type of machine in Chicago, but did know about the one in Seattle. I wish your friend the best of luck and God bless you both!

P.S. Don't know if you can take advantage of this or not, but they're also coming out with a very focused radiation machine at the University of Wisconsin-Madison. Not sure if it's photon or neutron (probably photon), but they say that it's so focused that you can avoid some of the nasty side effects, like the dry mouth (at least to a great degree). I believe that clinical trials are starting in late summer/early fall. Their phone number is 608.263.6400. A good ENT to talk to about this clinical trial would be Dr. Greg Hartig--I went to him for a second opinion in my case. You can reach him at 608.263.6190. Good luck!

mattie

dkeats said:

I have some information about parotid tumors.
I was diagnosed with muco-epidermoid cancer of the parotid (Left side) 6 years ago. They removed it and I had to do 7 weeks of radiation becuase it had gone to my lymph nodes and my brain stem. They didn't do any chemo becuase they said chemo had no effect on this type of cancer. I think you probably know that this kind of cancer is pretty rare. Mine was a high grade stage three. The side effects from the radiation were not too bad...dry mouth, sore gums and burnt taste buds so everything tasted awful. This past May I had a reoccurance of this cancer. It was in my lymph nodes, mastoid muscle and had crossed over to the other side of my neck. I had a classic neck dissection on both sides (incision from ear to ear). The problem was that I had already had my life time dose of radiation so they didn't know what to do about treatment after surgery. They consulted a specialist in Chicago and decided that they had to radiate me again if I had any chance of survival. They had also learned in the past 6 years that if you did chemo along with radiation, that the radiation had better results. I must say it was a pretty tough treatment. Week one was an infusion of taxol, then F5U that I had to have 24/7 for 6 days (wore a pump that was connected to my port). During that time, I had radiation twice a day. Then the next week I would have nothing. Then it started all over again. I did this for 10 weeks total. I also had a feeding tube which was a life saver. I couldn't eat anything and my throat and tongue were burnt.
I had to delay one week of treatment in week six because my skin was so burnt on the outside that I had blisters and had to use "salvidine" which they prescribe for burn victims. This all sounds awful but it wasn't so bad. It's been 6 months since my last treatment and things are looking well. My biggest side effects are from the surgery. They had to take out the mastoid muscle on my left side so I have a very weak neck and arm. Plus stiffness in my neck and shoulders. I was on the feeding tube for 5 months and there are still things I can't eat. They first things I could eat where cheese and chocolate! I still can't eat anything with tomato or citric acid (like fruits and some veggies). They say my condition might not change becuase I've been radiated twice what they consider acceptable.
I'm telling you all this not to scare you, but to let you know that I survived it not once but twice so I know your Mom can do it. Maybe something in this message will help and give you information to ask your doctors. I wish I could have responded sooner. You are probably well on your way in treatment. If you have any questions, don't hesitate to ask! Best of luck, Marilyn

Hi I had my facial nerve removed with my parotid cancer. I have alot of disconfort on my right side of my face and neck. I would like to talk to you about side effects.

Unknown

This comment has been removed by the Moderator

ivandiamond

parotid tumors
I had a parotid tumor surgically removed last Aug. Because of no clear margins and late stage cancer, I had conventional radiation. Cancer recurred in neck and near clavical in july. Simple surgury removed neck legions. Now I am receiving fast neutron beam radiation at NIU Institute for Neutron Therapy in Batavia, Ill. Only other fast neutron radiation is in Seattle at Univ of Washington. This is supposed to be best for salivary gland cancer. Check it out on internet. Let me know if I can be of further help.