Acinic Cell Carcinoma of the Parotid Gland
Comments
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another survivor
Last year, I, also, had a tumor slowly growing, for 10 years, under my right ear. When it was discovered 7 years ago, they said it was benign so I put off surgry for 3 yrs, until it become very noticable and uncomfortable. I was 41 when I had it removed. After 3 hrs of surgery, docs found it was ACC, told my husband that he was going back to remove lymph nodes and 'clean out' what he can,making the surgry 5 hrs. He also recommended 6 wks of radiation. Everyday, I laid on a table with a special made mask holding my head still. It wasnt painful and I was done in 10 minutes. I did get a dry, sore mouth and was a little tired. Lots of water and protein! Radiation was a small sacrifice to ensure removing all the cancer. Tho, I dont remember anyone mentioning the long term effects of radiation. I am a young 42, and now a bit concerned about what these effects might be. I still have the numbness,(sensitive to touch), but not painful. Now I need to follow up yearly.0 -
quite some time agograndmabear101 said:another survivor
Last year, I, also, had a tumor slowly growing, for 10 years, under my right ear. When it was discovered 7 years ago, they said it was benign so I put off surgry for 3 yrs, until it become very noticable and uncomfortable. I was 41 when I had it removed. After 3 hrs of surgery, docs found it was ACC, told my husband that he was going back to remove lymph nodes and 'clean out' what he can,making the surgry 5 hrs. He also recommended 6 wks of radiation. Everyday, I laid on a table with a special made mask holding my head still. It wasnt painful and I was done in 10 minutes. I did get a dry, sore mouth and was a little tired. Lots of water and protein! Radiation was a small sacrifice to ensure removing all the cancer. Tho, I dont remember anyone mentioning the long term effects of radiation. I am a young 42, and now a bit concerned about what these effects might be. I still have the numbness,(sensitive to touch), but not painful. Now I need to follow up yearly.
I had an unidentified mass behind my left ear in 1990. It was removed and diagnosed as an acinic cell tumor. Back then it was not classified as cancer (probably because it is so rare and they did not have enough data) For a year after that I had to go to the hospital every six week for a sort of screening. Again this reflects that the doctors did not really know how to proceed.In one of the screenings it seemed that the tumar had come back but the new stuff was luckily diagnosed as internal scar tissue
A little more than 22 years have elapsed now.It has not come back so far and I hope it never will.
All the best to you lot.0 -
My Dadbigtrixi said:quite some time ago
I had an unidentified mass behind my left ear in 1990. It was removed and diagnosed as an acinic cell tumor. Back then it was not classified as cancer (probably because it is so rare and they did not have enough data) For a year after that I had to go to the hospital every six week for a sort of screening. Again this reflects that the doctors did not really know how to proceed.In one of the screenings it seemed that the tumar had come back but the new stuff was luckily diagnosed as internal scar tissue
A little more than 22 years have elapsed now.It has not come back so far and I hope it never will.
All the best to you lot.
Hello to all! My daddy was diagnosed with breast cancer (which I now think it may have been ACC after all) in 1998 and then diagnosed with ACC in Dec 2008. He got surgery, no treatment, came back in Feb 2009, this time he got 2nd surgery and radiation. To my knowledge he never went back to oncologist until Sept of 2010 because my Daddy's liver enzymes were elevated (he would go to Mexico to check his labs on a motnhly basis). Same dr who did not have him come back for regular check ups told him to wait a couple of mos. Daddy went back and insisted on a pet scan and he finally got it March 2011. Unfortunately, the cancer had spread to lungs and bones. He went to MD Anderson in Houston, TX for treatment and he tried a couple of phase 1 clinical trials. The first one reduced cancer 20% in lungs, but he ended up with kidney failure which he recovered from. He tried a second treatment, but the cancer in the lung progressed. He lost his battle a couple of weeks ago. MD Anderson was a great facility to be treated in, his doctor was Pia-Paul in the Center for Targeted Therapy, she tried and did her best to find treatments for my Daddy. From reading your stories, all I can tell you is to be diligent about check ups, every 3 mos, to keep an eye on it and be persistent with the doctors. In my experience it is KEY with this type of rare cancer. The best for you on dealing with this disease. I hope my Daddy's enrollment in the trials will end up helping one of you....
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My sistermaurageor said:My Dad
Hello to all! My daddy was diagnosed with breast cancer (which I now think it may have been ACC after all) in 1998 and then diagnosed with ACC in Dec 2008. He got surgery, no treatment, came back in Feb 2009, this time he got 2nd surgery and radiation. To my knowledge he never went back to oncologist until Sept of 2010 because my Daddy's liver enzymes were elevated (he would go to Mexico to check his labs on a motnhly basis). Same dr who did not have him come back for regular check ups told him to wait a couple of mos. Daddy went back and insisted on a pet scan and he finally got it March 2011. Unfortunately, the cancer had spread to lungs and bones. He went to MD Anderson in Houston, TX for treatment and he tried a couple of phase 1 clinical trials. The first one reduced cancer 20% in lungs, but he ended up with kidney failure which he recovered from. He tried a second treatment, but the cancer in the lung progressed. He lost his battle a couple of weeks ago. MD Anderson was a great facility to be treated in, his doctor was Pia-Paul in the Center for Targeted Therapy, she tried and did her best to find treatments for my Daddy. From reading your stories, all I can tell you is to be diligent about check ups, every 3 mos, to keep an eye on it and be persistent with the doctors. In my experience it is KEY with this type of rare cancer. The best for you on dealing with this disease. I hope my Daddy's enrollment in the trials will end up helping one of you....
Hi, my sister now has this for the fourth time. She is at MD Anderson as well and about to start the clinical trials. She may have contacted you all ready but just in case she has not...My sister is only 30 years old. Her battle started at the age of 14. Our family is starting a non-profit to raise money for acc and need to speak with people who have had it. I know this was your father that had it but maybe you could still talk with us and help us??? I hope to hear from hear you, i can tell you more about her. please email me cindy.gilmore@hotmail.com or call 713-857-52550 -
HiMsJo said:Acinic Cell Carcinoma
I am commenting on your message. Alot later but, have the been diagnosed w acinic cell carcinoma of the perotid gland and had tumor removed April 2011. Tumor was low grade and 5 lymph nodes were benign. Two Drs recommended no radiation and 2 were for radiation. As of this time I have not had radiation. My Hd and neck surgeon rec not and has been following up w me every couple of months just checking me. Now 2nd opinion from oncologist at another facility is recommending ct scans and chest x-rays every 6 mos. or radiation treatments. But it has been 9 mos. since surgery. I am trying to make a decision soon and am concerned because they had done a needle biopsy 2 and a half mos. before the surgery so am concerned about spreading of the cancer cells through the bloodstream. Is there anyone w this form of cancer that could tell me about their experience, or opinion on needle biopsy, wish I hadn't had it? Its a rare bird, would appreciate some input. Good luck and prayers to all of you dealing with cancer of any kind. Had noticed you were 54 in Dallas area, and was curious what facility you found that deals w this kind of cancer. Thanks,Ms Jo 54 in central Texas.
Have you had any luck speaking with anyone in the same situation as you? My sister has had this three times and has recently been diagnosed for a fourth time. Please contact me...I would love to connect the two of you so you can talk. cindy.gilmore@hotmail.com0 -
ACCcindy.gilmore said:My sister
Hi, my sister now has this for the fourth time. She is at MD Anderson as well and about to start the clinical trials. She may have contacted you all ready but just in case she has not...My sister is only 30 years old. Her battle started at the age of 14. Our family is starting a non-profit to raise money for acc and need to speak with people who have had it. I know this was your father that had it but maybe you could still talk with us and help us??? I hope to hear from hear you, i can tell you more about her. please email me cindy.gilmore@hotmail.com or call 713-857-5255
I've been scrolling through the posts and seen this is the most recent post.I wanted to ask,how is your sister?I was diagnosed with acc 9 moths ago,had partidectomy and as of 1 week ago ct scan shows no cancer(btw I had a biopsy several months prior to surgery and it showed benign but inconclusive.Mine was contained in the gland,had not metas.so I feel extremely fortunate at this time.I lost my mother on July 23rd to pancan (pancreatic cancer) and watched her from day one (for about 14 months) slowly wither away,so dealing with this has been extremely stressful to say the least.I hope this post finds your situation better than it was.Please let me know.
P.S.I wanted to reach out and ask if anyone has knowledge of any acc patients that acquired acc through contaminated drinking water?Thanks for any input.0 -
My Husband has had 2 Rounds of ACC, now it is in the lungsACCme said:ACC
I've been scrolling through the posts and seen this is the most recent post.I wanted to ask,how is your sister?I was diagnosed with acc 9 moths ago,had partidectomy and as of 1 week ago ct scan shows no cancer(btw I had a biopsy several months prior to surgery and it showed benign but inconclusive.Mine was contained in the gland,had not metas.so I feel extremely fortunate at this time.I lost my mother on July 23rd to pancan (pancreatic cancer) and watched her from day one (for about 14 months) slowly wither away,so dealing with this has been extremely stressful to say the least.I hope this post finds your situation better than it was.Please let me know.
P.S.I wanted to reach out and ask if anyone has knowledge of any acc patients that acquired acc through contaminated drinking water?Thanks for any input.
I am looking for others that this has moved to the Lungs.
His started in the Salivary Glands in 2005, those were removed, then the Left Temporal Bone was eaten away by tumors (2012), with most of the surrounding dura. Both times they did 32 rounds of radiation.
Odd they said it never would have spread from his Salivary to his Brain area so they think now he had 2 hot spots, but I don't know about that. I cannot find much on this but it can show up in the temporal bones of the skull.
They found 2 spots in his lungs they are watching. He is seen every 3 months as this cancer seems to get really aggressive in a short period of time.
So far so good, I cannot believe how well he has done but he has suffered so much.
He was in construction, for 30+ years, now retired. His family is showing signs of Cancer as they age, but all different.
He never smoked, drank, or did anything in excess. Drs. just say Bad Luck.
If you have not pushed for full body scans, I would consider doing that, they would never have looked at his lungs if he had not been complaining of stomach issues and he went for 9 months complaining of a tingling in his left cheek until the tumor became viseable in the temple, they only did one MRI 6 months prior so fight for yourself.
Any thoughts are welcome.
Thanks!0 -
ACC metastatic to lungsbeboacc said:My Husband has had 2 Rounds of ACC, now it is in the lungs
I am looking for others that this has moved to the Lungs.
His started in the Salivary Glands in 2005, those were removed, then the Left Temporal Bone was eaten away by tumors (2012), with most of the surrounding dura. Both times they did 32 rounds of radiation.
Odd they said it never would have spread from his Salivary to his Brain area so they think now he had 2 hot spots, but I don't know about that. I cannot find much on this but it can show up in the temporal bones of the skull.
They found 2 spots in his lungs they are watching. He is seen every 3 months as this cancer seems to get really aggressive in a short period of time.
So far so good, I cannot believe how well he has done but he has suffered so much.
He was in construction, for 30+ years, now retired. His family is showing signs of Cancer as they age, but all different.
He never smoked, drank, or did anything in excess. Drs. just say Bad Luck.
If you have not pushed for full body scans, I would consider doing that, they would never have looked at his lungs if he had not been complaining of stomach issues and he went for 9 months complaining of a tingling in his left cheek until the tumor became viseable in the temple, they only did one MRI 6 months prior so fight for yourself.
Any thoughts are welcome.
Thanks!
Hello beboacc. Very sorry to hear of you and your husband's difficulties.
I had ACC (thought at time to be stage 3) in a minor salivary gland removed by surgery in early 2003, followed by radiation. That tumour is completely gone, no sign of recurrance. The usual aftereffects - dry mouth and some loss of facial sensation on that side. Plus I can't really grow a beard now, not that either I or my wife are complaining about that. Very minor, doesn't affect my quality of life.
Like your husband, there were no risk factors - I've never smoked or been near smokers, never was in proximity to toxic materials, and was in good physical health.
We found multiple small metastasis in both lungs in September of this year (2012). Quite an unpleasant shock, as we thought this was long past, but it appears that the primary had metastasized way back in 2002, before it was removed and nuked. It had only grown to a clinically detectable stage in this last year. So, obviously it is very, very slow growing. While cost of any potential therapy is not really a concern (I live in Canada), the oncologist advises that there is no current treatment available or recommended (typical of a slow cancer that has spread too far for radiation or surgery). Next CT is in December and if it shows no change, then the recommended course of action is just to keep up my general health since that has been the effective inhibitor (it's worked for the past decade....) If it grows fast, then they would try chemo. Obviously, I'll be continuing to hope for a more effective medical treatment to develop in the future. And in the meantime, staying healthy, and also looking into self-complementary oncology therapies such as The Healing Journey program that originated at the Princess Margaret hospital.
Best wishes, best of luck, and prayers.0 -
ACCcindy.gilmore said:My sister
Hi, my sister now has this for the fourth time. She is at MD Anderson as well and about to start the clinical trials. She may have contacted you all ready but just in case she has not...My sister is only 30 years old. Her battle started at the age of 14. Our family is starting a non-profit to raise money for acc and need to speak with people who have had it. I know this was your father that had it but maybe you could still talk with us and help us??? I hope to hear from hear you, i can tell you more about her. please email me cindy.gilmore@hotmail.com or call 713-857-5255Hi,
I read that your sisters battle started at 14 and like her I was diagnosed at 16. I am 24 now and have two kids but recently I have had a tender knot to appear in the same place as my last cyst and it seems to slowly be getting bigger. I recently had a PET scan in 2012 and was all clear and now I think 5yrs after my last surgery it has returned. I feel like I have a golf ball on the side of my neck.. I have Frey's syndrome associated with the surgerys and I am curious to hear more about yours sisters experience.
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Dear Melissa, I know it's been a while....Melissa_Mae said:Kathy
It seems you have been
Kathy
It seems you have been dealing with this a little while and there's not alot out there. I found out this week that I have acenic cell after my tumor was removed from my parotid. Sounds similar, it was wrapped around my facial nerve. I'm still healing from surgery but will have to make a treatment decision soon and was wondering what you decided to do. My choices are radiation and neutron laser therapy. Any suggestions or advice as I begin this process? Thanks!Dear Melissa,
I know it's been a while since you posted to Kathy but 4 months I was diagnosed with the exact same Cancer scenario as you. My parotid gland was removed and I have just recently completed a 30day IMRT Radiotherapy course.
Can you advise what post operation treatment you finally ended up doing and also tell me (after 3 yers now) how you are doing? Do you have regular check ups? MRI / PET CT Scans / etc...?
As you know, this cancer is so rare that there is little information out there so I really appreciate this website and connecting with fellow patients.
Thanks,
Stevito
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Dear Melissa, I know it's been a while....Melissa_Mae said:Kathy
It seems you have been
Kathy
It seems you have been dealing with this a little while and there's not alot out there. I found out this week that I have acenic cell after my tumor was removed from my parotid. Sounds similar, it was wrapped around my facial nerve. I'm still healing from surgery but will have to make a treatment decision soon and was wondering what you decided to do. My choices are radiation and neutron laser therapy. Any suggestions or advice as I begin this process? Thanks!Dear Melissa,
I know it's been a while since you posted to Kathy but 4 months I was diagnosed with the exact same Cancer scenario as you. My parotid gland was removed and I have just recently completed a 30day IMRT Radiotherapy course.
Can you advise what post operation treatment you finally ended up doing and also tell me (after 3 yers now) how you are doing? Do you have regular check ups? MRI / PET CT Scans / etc...?
As you know, this cancer is so rare that there is little information out there so I really appreciate this website and connecting with fellow patients.
Thanks,
Stevito
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Will help if needed....cindy.gilmore said:My sister
Hi, my sister now has this for the fourth time. She is at MD Anderson as well and about to start the clinical trials. She may have contacted you all ready but just in case she has not...My sister is only 30 years old. Her battle started at the age of 14. Our family is starting a non-profit to raise money for acc and need to speak with people who have had it. I know this was your father that had it but maybe you could still talk with us and help us??? I hope to hear from hear you, i can tell you more about her. please email me cindy.gilmore@hotmail.com or call 713-857-5255Hello! I saw your post and wanted to reach out and offer any assistance, as you mentioned you want to talk with those who have had ACC. I was diagnosed at 14y/o, had a full parodidectomy of salvia glands and all surrounding lymph nodes. I'm pleased to say that there has been no reoccurrence since, and that was 20 years ago. My follow-up care has been quite aggressive...I see my ENT every year and alternate chest exrays and CT scans yearly, just for safe measure. Due to the slow growth of this type of tumor, early detection is best.
When first diagnosed, my pediatrician at the time let the lump on my neck go and told us it was just swolen lymph nodes associated with puberty. It wasn't until a year later my mother insisted it be biopsied (the lump started to hurt and I was having consistent migraines). Thankfully, the surgeon who did the biopsy recognized this was something far beyond his capabilities, sewed me up and referred me to a specialist. Thankfully, we lived close enough to Mayo Clinic, which at the time, Dr. David Olsen (sp?) was the #1 surgeon in the world for this type of cancer.
Recovery was awful. I was out of school for 2 months, and the facial paralysis eventually subsided, although there are still hints of it that only I notice. I also have Frey's syndrome, which is more of an annoyance than anything. Years ago I also encountered a problem with my slavia duct spontaneously getting clogged, which would cause the right side of my face (the side I also had my surgery on) swell up to be 3x the size of my left side. The first time this happened we rushed to the ER not knowing what was going on. With a quick look we were told it was a clogged duct and sucking on a lemon drop would fix it...and it did. It happened a couple times after that but it's been 10 years since it's happened.
I still see the same ENT I saw for follow-up after the initial surgery 20 years ago. We have developed a fantastic patient-Dr relationship and he keeps me apprised of any and all latest research findings related to this cancer. Again, because of it's rare nature, to my knowledge, there's still no answer to the "Why me?" question. If you or any one else reading this know's differently, I would be very interested in hearing more.
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f/uLevijm said:ACC
Hi,
I read that your sisters battle started at 14 and like her I was diagnosed at 16. I am 24 now and have two kids but recently I have had a tender knot to appear in the same place as my last cyst and it seems to slowly be getting bigger. I recently had a PET scan in 2012 and was all clear and now I think 5yrs after my last surgery it has returned. I feel like I have a golf ball on the side of my neck.. I have Frey's syndrome associated with the surgerys and I am curious to hear more about yours sisters experience.
Levijm,
Have you followed-up with your physician regarding the lump that has reappeared? If you haven't, please do and INSIST they take aggressive measures to identify exactly what it is. To my knowledge, this type of tumor has a greater likelihood of reoccurring in the first 5-7 years after initial removal/treatment compared to reoccurring decades later, although the later is one of the characteristics of this type of tumor.
My aggressive approach with f/u has lead me to remove any cyst-type lump that has appeared on my body (i.e., the bottom of my foot).
Best of luck.
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f/uLevijm said:ACC
Hi,
I read that your sisters battle started at 14 and like her I was diagnosed at 16. I am 24 now and have two kids but recently I have had a tender knot to appear in the same place as my last cyst and it seems to slowly be getting bigger. I recently had a PET scan in 2012 and was all clear and now I think 5yrs after my last surgery it has returned. I feel like I have a golf ball on the side of my neck.. I have Frey's syndrome associated with the surgerys and I am curious to hear more about yours sisters experience.
Levijm,
Have you followed-up with your physician regarding the lump that has reappeared? If you haven't, please do and INSIST they take aggressive measures to identify exactly what it is. To my knowledge, this type of tumor has a greater likelihood of reoccurring in the first 5-7 years after initial removal/treatment compared to reoccurring decades later, although the later is one of the characteristics of this type of tumor.
My aggressive approach with f/u has lead me to remove any cyst-type lump that has appeared on my body (i.e., the bottom of my foot).
Best of luck.
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Acinic Cell Carcinoma
I went into the doctor three weeks ago concerning constant headaches. I then asked my doctor should I be concerned about the small bump under my right ear. He, very unprofessionally told me that it looked like it was Hodgkins Disease and refered me to a specialist. I met with the specialist, he said it was inappropriate for the previous doctor to diagnose me with that and he proceeded to tell me it was probably just an infection from a wisdom tooth removal. Last week, I met with the specialist to get a CT Scan as well as a biopsy done. Without actually testing the fluids they got from my biopsy, the doctor came back and told me it was simply an infection and he proceeded to give me a prescription for anti biotics. Tuesday, I got a call from this same doctor who tells me he got the results back from my biopsy and I have a rare cancer called Acinic Cell Carcinoma. I was upset and did not have much to say to him. He apologized and scheduled me to meet with him next week.
I have a few questions.
First, I am 21 years old, never had any medical conditions and I have never experienced this before. I am a college student and far from home which is only making it worse. I want to know, from other people who have been diagnosed with this, did you go to another doctor for a second opinion? I am questioning whether or not I should trust the validity of my current doctor due to the fact that he is very cocky and tells me incorrect information without first testing what needs to be tested. I did not appreciate being told one thing, that it was just a simple infection, then being told the following week that I have cancer.
Second,
To anyone who has had this surgery done, how long was the recovery process? As I mentioned I am in college, my last year and I do not know if I should deal with this after I graduate or what. Everyone is telling me my health is more important, but I do not feel that way. I feel that I have come so close to getting my degree that I have worked so hard for that I do not want to have to stop. I'm currently in panic mode if you could not tell. I am so confused on what to do about this situation.
If anyone can provide information about their own experience with this I would really appreciate it.
Thank you so much!
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I had a painful marble like lump under my ear. I had several doctors and an oral surgeon say it wasn’t anything to worry about. Finally my own dentist urged me to get it looked at. I went to an ENT, he operated operated and removed my peroxide gland. It was cancerous. Because the ENT wasn’t convinced that the sac was removed without being compromised, radiation was recommender. Now 16 years later I still have side affects such as muscle twitching and atrophy in my shoulder. I also have dry mouth. Does anyone have the muscle twitching?
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