FOLLOWING ARE STORIES OF MISDIAGNOSES FROM OUR MEMBERS
IT IS HOPED THAT THESE STORIES WILL BE OF BENEFIT TO PHYSICIANS WHEN DIAGNOSING THEIR PATIENTS
(Names of patients, doctors and hospitals have been removed)
I walked around with symptoms for 3 years before I was diagnosed and guess what? I was the one who found the tumor. My 3.5cm tumor was located "inside" the base of my tongue. My symptoms consisted of a severe sore throat (right side), intense ear pain (right side), facial/jaw pain (right side), and high blood pressure. All symptoms were "chronic" for three years. Went to Internists, ENT, periodontist, orthodontist, chiropractor, acupuncturist, etc. It was the periodontist that misdiagnosed me as having TMJ. So a year and a half of the three years I was treated for TMJ. The high blood pressure was treated as something separate from my other symptoms. I always felt it was directly related to the other symptoms I was experiencing. Finally after three years, I was visiting a nurse practitioner and I asked her to feel a lump on the right side of my neck up under my jaw bone. Told her I didn't feel it on the other side and that I felt the soreness in my throat was emanating from that lump. Finally went for a CT (something the periodontist should have ordered for me a year and a half earlier) at a nearby military hospital. When the CT showed a tumor I went to [hospital] for a biopsy in Nov '97. That's when I received my diagnosis. Have been with them since then.
_______________________________________________________________
I was just recently diagnosed with ACC, June 26th. For several years I had occasional swelling of the left submandibular gland with slight irritation. My primary doctor suggested I see an ENT a few years back. The ENT told me he felt it was like a grain of sand in the gland along with my smoking, irritating and causing the gland to swell and if the gland did not grow or cause me pain not to worry about it. He set up an appointment for a biopsy but said he was certain this was all it was. The big chicken I am, I decided to go with his "thought" and not have the biopsy.
About a year ago the swelling came and never left, then six months ago the irritation would not stop. When the left side of my tongue went numb and the pain worsened, I decided it was time to have this checked out again.
My doctor sent me to another ENT who after examination decided it was inflamed from infection and I needed surgery to remove the submandibular gland. He explained that this so called grain of sand probably had lodged in a duct and was causing the inflammation. Surgery was scheduled as an out-patient.
The doctor was shocked to find a tumor instead. This tumor had taken over the submandublar gland, was wrapped around my facial nerve causing the tongue numbness and had grown up to my left ear (about a week before surgery I had started having earache in my left ear). The tumor was sent for biopsy and the following Monday after surgery I was informed the results... ACC.
_______________________________________________________________
I was misdiagnosed for 5 years before my diagnosis. I had a lump in my submandibular area. Had a CT scan, fine needle biopsy, saliogram and treated for inflammation, no change and told it was OK and just to watch it. Finally it was diagnosed Feb 98 with much perineural invasion.
_______________________________________________________________
My husband went to his primary Dr. for a year complaining about a bloody nose & the Dr. had him stop taking aspirin, stop blowing his nose so hard, dry air, etc & finally he "saw" something in the nose (a year later) & sent him to a specialist to have a nose polyp removed. The specialist looked at it, agreed it was a polyp & scheduled him for surgery. It was not until they got into the surgery that she saw the "look" of the growth & knew it looked like cancer. Then she biopsied the thing & it was identified at ACC right from that. Surgery to remove the tumor was after that diagnosis.
_______________________________________________________________
For a little over 4 years I was misdiagnosed. I had a numbness in my left cheek. I would tell doctors, dentists, opthamologists about it. The dentists seemed the most concerned and would study their xrays to see if they could see anything, but none did. The doctors would either ignore the question (I know that is my fault now and will not let it happen again) or would treat me as if I was a hypochondriac. It wasn't until the tumor had gotten bigger and started to affect my left eye that any doctor took it serious. My eye doctor sent me to a neuro-opthamologist as I had developed Aides Pupil. The neuro-opthamologist sent me for an MRI which was read wrong. In two months I was back in his office because my eye had stopped making tears. The neuro-opthamologist sent me for another MRI at a different facility and this one was read correctly. From there I went to an ENT who did a biopsy and the rest is history.
_______________________________________________________________
At age 17 he noticed a "pimple" in front of his ear that wouldn't go away. After months, he decided to go to a doctor about the pimple, because it had gotten a little bigger. The doctor told him it was an ear infection and treated it as such...but the antibiotics, of course, did not help. So- the doc sent him to an ENT. The ENT informed him that it was "only" TMJ, and that as long as it didn't bother him, to not worry about it, but later on he could get it fixed by an oral surgeon whenever he had the time and money. He told [my husband] it would swell and maybe even get larger the longer it went untreated, but that he had plenty of time to get it taken care of. So with that, [my husband] went on about life, not even worried. By age 24 (Seven whole years later!!!) the "TMJ" had caused a knot in front of [my husband]'s ear the size of a golf ball, and it was beginning to get painful, so he decided to take a vacation from work and get it fixed. We consulted with a dentist who told us that it was definitely NOT TMJ, and took x-rays. He told us from those x-rays that it was either a cyst or a tumor and referred us to an oral surgeon for further care. The oral surgeon determined that it was a tumor, and referred us to yet another ENT for further investigation. The ENT ordered a needle biopsy which came back BENIGN. He then referred us to a plastic surgeon due to the fact that it was so close to a facial nerve that he didn't think he could perform the surgery. The plastic surgeon, believing it was benign, went ahead and scheduled an outpatient surgery to remove it. The surgery was supposed to last half an hour, but ended up lasting seven hours, and landed [my husband] in ICU. The surgeon told me he had never seen anything like it. That he took out 3/4 [my husband’s] jaw muscle, the salivary gland, and had to scrape it from the nerve. He said that he wanted another biopsy because it looked so suspicious. The biopsy came back ACC and none of the doctors we had seen had ever seen ACC before. The surgeon recommended a good oncologist and they teamed up and researched it some before recommending radiation therapy...the rest is history..... [my husband] will be 30 in January.
_______________________________________________________________
I am now 50. Since I was about 30, I had slowly increasing pain in both breasts, but mostly the right one. For a long time, it was only when I was premenstrual or menstruating. I was told that it was because my breasts were "fibrocystic," and that I should stop drinking caffeine and take Vitamin E. I started taking Vitamin E, and that seemed to help for a few years. (Not drinking coffee was not an option--I'm a writer.) But during the 2 to 3 years before my diagnosis of ACC in March 2000, my periods began to wane, while the pain in the right breast increased, and the lump causing the pain also increased in size. Eventually, for at least the last year before my diagnosis, that lump hurt all the time. Sometimes the pain was so bad I had trouble sleeping on my right side, and it usually hurt when someone hugged me too hard. But until the last mammogram in early 2000, all that showed on my mammograms was increased "breast density," also called increased "fibrocystic" lumps by my then-doctor. There is a myth that all "breast cancer" is painless. I later discovered that about 10% of cancers occurring in the breast ARE painful, including ACC. I also later discovered, according to Dr. Susan Love's Breast Book, that the so-called fibrocystic lumps are a myth: they are not harmless, often precede cancer in the breast, and drinking coffee has nothing to do with it: another myth. When my new physician referred me to the first surgeon in March 2000, before the biopsy, he showed me my recent mammogram and the previous year's mammogram. The lump was clearly visible on the recent mammogram, but only barely detectable--and only if you were looking for it--on the previous year's films. In all the previous year's films, the so-called "fibrocystic" matter was hiding the lump of what turned out to be ACC. After the biopsy, my first surgeon determined that the wall of the tumor's capsule had in fact already broken, sending out its little seeds of destruction. IF my previous doctor had been more interested in me as a person and my family history of breast cancer than in trying to sell me on hormone replacement therapy, and IF she'd known about the fibrocystic myth and what its presence can mean, and IF she'd known that some cancer in the breast is painful, I'd have had a biopsy a lot sooner, when the tumor was smaller, instead of not until its capsule had broken.
_______________________________________________________________
I was misdiagnosed in Lacrimal Gland area, as are a great deal of other Lacrimal Glanders. They originally diagnosed me with Pleomophic Adenoma or Mixed Benign Tumor of the Lacimal Gland. The differential diagnosis between the two is very difficult because they resemble each other so much. I guess the two different doctors who diagnosed me just thought that ACC was too much of a long shot to suspect it. Luckily the treatment indicated with a diagnosis of Pleomorphic Adenoma is surgery to remove the entire tumor with a healthy margin, just what they probably would have tried to do had they actually known they were dealing with ACC. Three of the reasons that they did not get it right are, one, that there was not the regular intensity of pain associated it, two, that there was not noticeable pitting of the bone, even though there was definite erosion, and three, that the time from presentation to the time I actually went to the doctor was 3 years, much more than the customary 1 year.
_______________________________________________________________
About 11 or 12 years ago I began to have severe pain in my left ear. I initially went to an ENT who gave me some ear drops and dismissed me. Over the course of the next 5 years I went to 4 or 5 more doctors, ENTs and GPs, getting more ear drops and being dismissed each time. All during this time I was in sheer agony with tremendous pain in my ear where I could not touch the ear in any way nor could I ever sleep. I think the problem was that there was nothing tangible for these doctors to see. The pain was inside, there was no outward sign of a problem. I also believe that doctors hear so much moaning and groaning from people that they don't take people very serious. It's insulting. Anyway, after about 5 years of this finally a bump developed near where the pain was. This was great news for me. I now, finally, had something to point to and say, see, there is something going on. A biopsy was done and ACC was diagnosed followed by surgery. For the next 5 years after the surgery I saw the ENT who did the surgery once a year for an office visit. He merely looked into my ear and said it looked fine. A couple of weeks ago, it now being 6 years after the initial surgery, the cancer has returned in the exact same spot. I must tell you, even though I have a history of this and complained about pain in the ear again, I STILL wasn't being taken seriously. The ENT ordered a CT scan to amuse me since he knew there was no way the cancer was back. When the CT scan showed a tumor he still insisted the cancer was not back but ordered a FNA and what do you know, the cancer was back. I now am scheduled for surgery to have the tumor removed again. I don't know anything about this cancer, it has never been discussed with me what is going on or what to expect or if this is life threatening or what. I know nothing. Hopefully I'll know more about my prognosis after the surgery. Misdiagnosis? That's an understatement.
_______________________________________________________________
Misdiagnosis....hum.....cough for 1 1/2 years...consistently getting worse, wheezing, 'nodule' seen near thyroid, neck protruding near thyroid...and still they said don't worry, its nothing... finally I demanded tests saying if they didn't do them I'd go to the emergency room where I would get proper care. Gee a tumor 7cmx3.5cmx2cm....the rest is history...including my voice box, vocal cords, thyroid and 8 rings of my trachea...I now breath through a hole in my throat and talk with a prosthesis that makes the voice noise in my esophagus. I can understand doctors waiting a few months to see if symptoms clear up...but waiting years is inexcusable. The kicker in my situation is in 1997 I had an MRI for back pain. The radiologist 'missed' seeing the huge tumor! Oh...but there was no sign of anything serious with my back!
_______________________________________________________________
I had my share of being misdiagnosed. In 1978, I went in because of a very painful lump behind my ear and low grade fevers every day. The G.P. just dismissed it as a "swollen gland". I had my own issues with doctors not taking me seriously, so I left, even knowing intuitively that it was cancer. But at that time I had such a fear of cancer that I just didn't want to face such a diagnosis, so didn't pursue it for close to four years until I just couldn't stand it. So late in 1981, I went to a diagnostician. Severe problems like terrible pain at the site, night sweats and horrid headaches prompted me to check it out. His diagnosis was "mononucleosis cells caught up in the gland" so I had a blood test done and no mono cells showed up. Then he said "it must be something more serious like Hodgkins disease or Leukemia. But he didn't want to deal with it, and finally I searched out an ENT in the LA area. (I'd had enough of the medical community in this "severely rural" area that I live in. It really is labeled severely rural according to the state!) The ENT knew right away that it was a parotid tumor, but said my chances of it being benign were 95%.( So much for percentages!) This was in 1982 when I had my first surgery.
_______________________________________________________________
In l992 I went to an ENT for complaint of off and on pain and swelling in a lump the size of a bean under my jaw. He said it was a calculus in the salivary gland. I requested it'd be removed, but he said there were too many nerves in the area and I could end up with a paralyzed side of my face, and I should be able to put up with the discomfort for 5 years at least. By then he said it could be so chronically infected antibiotics wouldn't help and it would have to come out. In l998 I decided I'd had enough and wanted it out. I went to a different ENT this time so I could get it out for sure. He said 50% of all neck masses are malignant so he always does biopsies, and not needle, because they are sometimes false negative. It was ACC.
_______________________________________________________________
I discovered a lump behind my jaw, under my ear. Primary care physician said it was a swollen gland. 3 months later is was still there and larger; went back and same doctor ordered a needle biopsy, which showed benign tumor. ACC was discovered several months later during surgery to remove the "benign" tumor.
_______________________________________________________________
I am not sure, that you are interested to my story. I was misdiagnosed on the other side. After my surgery in 1999 and my radiation in 2000 they read my first MR and said there is a tumor again. One week later I had the next surgery and it was nothing. I war very happy about this, but it was one surgery to much.
_______________________________________________________________
[My wife] was a tough one because she suffered from back pain for three or four years before we found the tumor, which is still officially listed as unknown primary. Our drs missed the tumor on the initial MRI, and found it only after a second MRI the following year. I guess our big gripe is that the initial comments from the [hospital] pathologists following a needle biopsy were "We don't know what this stuff is, but is sure isn't cancer!" after which we had a big party. If a knowledgeable pathologist had seen the tumor cells, we would have had an accurate diagnosis. As it turned out, [my wife] had to have a surgical biopsy during which they had to drill THROUGH her spine to get at the tumor cells on the other side. Only after the additional pain of having to go through this were we able to get an accurate diagnosis. We were told that ACC is extremely rare, and rarer still that it would show up on her sacrum without a trace of it elsewhere. So, I guess we would have to cut them some slack. Still.....hopefully more pathologists will learn to recognize ACC when they see it!
_______________________________________________________________
There are far too many of us misdiagnosed and a brainstorm is needed to find a way or ways to stop this. My story is the same went to PCP Doctor for what he thought was a sinus condition about 2 and one half years ago and to make a long story short I could not convince him that nothing tried worked. After seeing another Doctor paid out of my pocket rather than using the insurance the new Doctor hearing my story suggest a cat scan and I said it would be best to contact PCP to order scan and the new Doctor agreed. I call my PCP and asked for the cat scan and he agreed by saying that he would refer me to an ENT guy and order the scan. I waited 8 days and no call from PCP or Staff and the rest is history.
_______________________________________________________________
My diagnosis was made in early 1982, For about three years prior to that, I had gone to several doctors including my family doctor who found nothing wrong. He finally referred me to an ENT doctor, nothing. Next I saw another ENT who assured me that there was no cancer. My symptoms were a sore throat and a cough. Every time I started to speak I had to clear my throat. The problem came to light when my dental hygienist noticed a swelling under my tongue. My dentist referred me to another ENT who did a biopsy and it was ACC in the submaxillary salivary gland. Had surgery and radiation. In 1990, had a prostate biopsy which was also ACC. Treated with radiation therapy. I had 6 month check ups Xray and occasional CT Scan and MRI. In 1993 Xray revealed two spots on my lung. The doctors decided they were just scarring from previous pneumonia. Subsequent tests came back normal, that is, no change. In 1996, I insisted on having another CT Scan, after which, the doctor decided that a needle biopsy of the left lung might be indicated. Of course it was diagnosed as ACC. The doctor recommended no action be taken. He said that ACC was slow growing and that other causes were apt to cause my death before the ACC. He suggested I come back when the pain became unbearable and he would recommend some chemotherapy. At that point, I contacted ENT at [hospital] (they did the first surgery in 1982). A tumor board was convened and recommended lung surgery which was done 1997. Subsequent tests revealed mets in both lungs and the liver and in the left shoulder. The tumors in right lung and shoulder were treated with radiation due to severe pain in December 2000. The Onco at [hospital] maintains follow up but recommends no treatment, except for Tamoxifen and pain medicine. When it gets to be too much, he wants to try chemotherapy.
_______________________________________________________________
I thought everyone might be interested in my story of misdiagnosis. It was me. I was the only one who was wrong. I put off going to the doctor because I was convinced that the wheezing noise I was making was due to my 5 cats and that I volunteer at an animal shelter. I was certain the doctor would just say get rid of the cats and I, of course, would say no way. When I finally went to the doctor she said maybe a sinus infection and gave me some meds. I didn't even have the prescription filled for a month because I was certain that was not the problem. When I went back to the doc (five months later) she said maybe asthma and gave me a new prescription. I tried it and actually went back the next week to tell her that they did nothing. She was concerned enough to send me to a pulmonologist who was so worried about the noise he insisted on doing a broncoscopy the next day, even though the chest x-ray didn't show anything. The next day the broncoscopy revealed a large tumor in my trachea blocking 95% of the airway. Neither of these docs ever said anything about the cats. The only time it was mentioned was in the hospital after the dx of ACC. One of the interns actually put it on my record that he advised me to get rid of them and I refused. Funny, what difference did it make then?
_______________________________________________________________
I kept complaining of a lump and tingling like electricity going through my neck, and the Dr said it was just swollen glands and gave me antibiotics. Then again I saw her and she said, not to worry about it, all was OK. My next visit I said, could it be thyroid, as I had had this trouble years ago. No she said. Finally, six months later I was still asking her, and she seemed irritated about my questions, but she said OK I will send you to have an ultrasound. She thought I was fussing over nothing. They found a tumour, I went to another doctor, had a biopsy, and luckily (or unluckily) he discovered it was ACC. But it took 6 months of my complaining before my Dr took action.
_______________________________________________________________
In mid 1997, upon the *urgent, persistent, insistence,* of the Radiologists at [1st hospital], a [2nd hospital] ENT surgeon, finally, used the pharyngiscope on me. For at least 8 years prior to that [2nd hospital’s] internal med MDs offered a dx of adult onset asthma, occasional vomiting vertigo, and *CARPAL TUNNEL syndrome(!); the [2nd hospital] MDs and two [2nd hospital] radiologists were all certain that the golf ball sized mass in the meticulously redone series of X-rays could only be a "bolus of food" stuck between my esophagus and trachea, in my voice box. Chiropractors - and radiologists who would associate with them - couldn't possibly be real healthcare providers capable of diagnosing and referring real medical problems, right?- was their attitude. During the exam, [Doctor] confidently announced [although my airway was seriously occluded - 90% without the swelling of irritation/excitement] "Oh, good it's *not* cancer!" There's more to the long saga but [Doctor] and [Doctor] did a laser debulking (surgical complications largely expunged from chart by [2nd hospital’s] legal department). The pathology reports there, and subsequently at [3rd hospital], stated ACC.
_______________________________________________________________
First earache in right ear in Fall 1987 which persisted. Consulted with ENT's and PCP's throughout the next couple years with the same problem and none of them could find anything. Early 1990 the pain had really increased so saw a new PCP in Arizona and again he put me on antibiotics even though he couldn't find anything causing them. A month later the pain was shooting attacks from the ear to the back of the throat so was referred to a ENT and he thought it was the arthritic spurs in the back of my neck causing them. Had x-ray which showed minimal spurring so had physical therapy. Pain persisted and continued to increase. Then I was referred to a neurologist who thought it could be Glossopharyngeal Neuralgia so ordered a MRI of the head only. That was inconclusive so he suggested I see a dentist.
Went to a regular dentist who said it could be TMJ so took me across the garden area to a TMJ specialist. They proceeded to do the full head, circle x-rays and was diagnosed "a classical case of TMJ". He wanted $7000 up front to start treating me with a splint and possible braces on my teeth but he couldn't guarantee this would help the pain for some time.
I called my insurance company to see if this was covered and it only covered $1000 lifetime on TMJ and told me to get a second opinion and gave me the referral and name of a TMJ specialist. So I called the first TMJ specialist (and I use that term loosely) and wanted my x-rays to take with me and would pick them up. When I got there they told me they couldn't find them (this was two days later). The new doctor called over there and demanded them but they stuck to their story so he had to take new x-rays. NO TMJ!!! He suggested I see a different ENT to check for Eagle Syndrome (still don't know what that is).
Then the fun began - was told it was sinus and that I was allergic to my cats. Told me to flush my nose with a solution of 1 tsp Glycerin, 1/2 tsp salt, 1 cup of water and gave me a small syringe to flush this up my nose and spit out my mouth, do this four times a day using a cup of water each time. Told him I would drown and then he told me to get rid of the cats. That's when I asked him if any doctor in AZ had gotten higher than a "D" average in medical school and he told me I could call him a Quack but that was what was wrong. He later got my Rubber "Quack" Duck award.
So I called back my PCP - by this time (July 1990) the pain was excruciating - like a knife stabbing me from the ear to the throat and then twisting it. Referred me back to the first ENT I had seen in May. He saw no sign of the Eagle Syndrome and suggested I see a different Neurologist and gave me a referral.
She said it was a "Classical case of Glossopharyngeal Neuralgia and put me on Dilantin without telling me the possibilities of any side affects and had another MRI done. I questioned why they weren't taking the MRI further down into the throat and she said that it had to be nerve pain from the brain to be causing that sort of pain. Six days later I got lost going to work and didn't know who I was when I pulled into a gas station for help. She said I couldn't just stop taking the Dilatin but had to wean off it - Ha! I never took another one! She then decided to give me Lidocain for the burning in the throat and scheduled a nerve block for the 9th cranial nerve from the brain to the ear and said we could do two of these safely if necessary. First one didn't phase it, so did another one a week later and had the pain back before I even left the surgi-center. They suggested we try a third one the next week and I yelled "Enough Already!!!"
All of the above doctors gave me things for pain and each time I was allergic to them or they didn't help such as Demerol, Tegretol, Naprosyn, Fiorinal, etc, etc.
My daughter came out on vacation the next week and heard this pounding noise in the middle of the night and found me hitting my head against the wall trying to knock the pain out of my ear.
The next day we called [hospital] who told me they couldn't get me in until Feb. 1991 - this was August 27th, 1990. Told the gal I would be dead by then so don't bother, so she wrote down my history of doctors, treatments and drugs and said someone would call me back. An hour later [Doctor] called me and after I convinced him that I had been through all of the above and more he told me to come in the next morning. So my daughter and I called around and picked up MRI's, x-rays and copies of doctors records and headed to [hospital] the next morning.
[Doctor] said he would check me first and then look at the pictures - he used his two fingers to hold my tongue down instead of a tongue depressor and the rest is history now. HE FELT THE TUMOR WITH HIS FINGERS embedded in the base of my tongue.
_______________________________________________________________
I showed the lump in my parotid gland to my family physician in February of 2000. He told me all the different things that it could be, and told me to come back in six weeks, or sooner if I could notice it growing. When I went back he sent me to an ENT doctor. This doctor sent me for a biopsy. The biopsy came back as benign inconclusive. I was told that it was a pleomorphic adenoma. The time of surgery was left up to me, but I was cautioned that my facial nerve could be affected if I let it continue to grow. Two days after surgery I was told that the tumor was being sent to [hospital], as the pathologist wasn't sure what it was. It turned out to be ACC.
I feel fortunate that I was able to feel the lump before it got too big, and that my family doctor is very diligent in referring to other doctors. My ENT surgeon was very skilled and was able to spare the facial nerve.
On September 11 it will be a year since my surgery, and in the middle of November it will be a year since my radiation treatments were completed. I still have some tingling in my cheek area, my ear rings, and wax accumulates in my ear and is very difficult and painful to remove; plus, I have some hearing loss. I don't know if this is permanent or not, but I'm not complaining as so many others have had results so much worse than mine. God has been good.
_______________________________________________________________
I had a doctor order a needle biopsy, which showed a benign tumor. it wasn't until the surgery did the tumor biopsy showed it was acc. left submandibular gland !!
_______________________________________________________________
[My husband] had noticed a lump in his neck and mentioned it to our family doctor. Doctor said (something to the effect of), "It's probably just swollen glands, after a cold. That's a delicate area to be messing in...not something I could take out in the office. Don't worry about it unless it gets bigger or starts to cause you any pain or other troubles." So, [my husband] didn't worry about it, for years. It didn't go away, but it didn't cause him any problems either. It was probably 6 to 7 years later when [my husband] started noticing a tingling feeling in the saliva gland. We had moved and new Doctor agreed it should come out (submandibular gland). We had no idea it could be cancer until the pathology report came back a week after surgery.
_______________________________________________________________
I was diagnosed with ACC in 1993 I had been having problems about 4 years before. I was first told that I had TMJ and was given a mouth piece to wear a t night to stop the grinding of teeth which they said was causing the pain in my right jaw. I then went to an ENT who told me I had some type of infection in the ear canal and was given cream to place in the ear canal each day . After this did not make a difference I changed ENT's and this one told me that I had a benign tumor in the ear canal and did surgery to remove it. This was in 1992. The following year I was reading a story to my son he put his head back and hit me on the side of my head I hurt so much that I cried. I then went back to The same DR who told me that my benign tumor had returned and that she would have to do more surgery. I then requested a second opinion which she did not want me to do . I told her that I was going for another opinion and that if she did not want to make the appointment that my medical DR would. She finally agreed and sent me to [hospital]. I was in that DR's office about 10 minutes when he told me that it was Cancer. He used the same Lab report and slides that she had. At that time I underwent 7 1/2 hours of surgery to remove the tumor. It was laying on the facial nerve but it was not wrapped around it. My face was temporally paralyzed . After the surgery I took 30 radiation treatments at [2nd hospital]. It was closer to my home and I could travel here and back every day. I was clear at each check up until last August. A place was found in the right ear and from there is was found that I have mets in the lungs. I took 25 radiation treatments again at [2nd hospital] to help with the pain in the right rib. I have not been yet to an Oncologist, just seen the DR. who does radiation. I am looking for an oncologist to go see to find out if there is any help out there. I have received some names from other members and I am planning to follow up on them.
_______________________________________________________________
Tooth pain for 3-4 years. First saw dentist in Philadelphia area. I was told teeth were fine. Moved to Arizona, April 2000. Tooth pain became worst, some ear pain too. Went to another dentist in Phoenix area, November 2000. Again told that teeth were fine, but if pain kept up come back and maybe I need a root canal. That night I went home and looked in mirror at my mouth. I saw a bulge protruding down the roof of my mouth. Showed my husband and made appointment with regular physician. This doctor referred me to ENT who then scheduled a biopsy, December 2000. Came back as ACC.
_______________________________________________________________
I was treated for "adult onset asthma" for 3 years with symptoms of cough, wheezing, choking that was unresponsive to inhalers before they located my tumor in the left mainstem bronchus (5 cm.) They finally did a ct when I started coughing up blood last November.
_______________________________________________________________
I was misdiagnosed for 5 years. My GP said it was just an inflamed gland. I had a lump on the right side just under my ear and behind my jaw. She said I would have to live with it. It kept getting bigger and more uncomfortable but she did nothing and because she is such a poor record keeper there is very little in her clinical notes to say there was an ongoing problem. But I kept track of appts in my business appt. calendar and often when I went in with one of the kids (I have 4) I would remind her of the lump. Finally after a year she did a sialigram (spelling?) and it caused the pain to increase and the test proved inconclusive. she then sent me to an ENT who was just starting out and she did an ultra sound which couldn't be read properly because the dye from the sialogram was still in my parotid gland (could a tumor be blocking the die from leaving?) then they did a CAT scan which showed a mass but the ENT felt it was an inflamed gland. She tried antibiotics and it didn't work. She sent me to another ENT from Toronto and he looked at me and the CAT scan and agreed it was just inflammation. I was too young (39) and it would be very rare to have a tumor in that area so he relied on statistics and sent me home saying not to worry. He did not do ONE test, and assured me he was THE BEST head and neck guy around and I could trust his opinion. Over the next few years I went to my local ENT and was told things like 'you must have a low pain tolerance' or we could do other tests but 'they are reserved for more serious illnesses'. She thought I was a whiner because this other GOD of head and neck said there was nothing wrong with me. She did a needle biopsy and at the time she said it wasn't the needle she normally uses but it would 'have to do' and the pain was excruciating, I felt like I had been assaulted, it was horrible. I've had many tests, gave birth to 4 kids naturally, without medication, had a perforated ulcer and two other surgeries and they were like a hang nail compared to this needle biopsy. I am not a wimp for pain. The test was inconclusive! I now know that it should have been done with the aid of an ultrasound, but I didn't know this at the time. Sometimes I wonder if she perforated the tumor and that is when it started to spread, this was in 1996. This went on for another few years and all she would offer me is a different pain medication. Then in summer 1998 I started to get numbness in the side of my face, my sense of taste changed, I would get terrible shooting pains up the side of my face and of course I had this huge bulge under my ear. I went to see my ENT and she still refused to do anything (at this point I was feeling, like why go to the doctor, they do nothing!) I asked to see someone who could help with the nerve pain and she sent me to a neurologist. It took 4 months to get an appointment (it was considered non urgent). The neurologist said she wanted to do and MRI, this was the first I'd ever heard of this test never having been really ill before. It took another 5 months to wait for this test. Needless to say the MRI showed a very large invasive tumor and she asked me to see a colleague of hers in Ontario. He saw me within a month and did a needle biopsy (which was painless) And he called me April 1,1999 and said he was very sorry but the biopsy showed it was ACC a rare cancer. Later that day the other guy, the head and neck GOD told me the biopsy information was sent to him and he felt it was most probably benign. WHAT? But he felt I should have the surgery as soon as possible. Anyway the fellow in Ontario studied under the other fellow and did not want to interfere, they really stick together don't they? I had surgery April 19th, 1999 and there was absolutely nothing benign about it. It was terribly invasive to all the surrounding tissue and this fellow never once came to me to tell me it was cancer, he sent one of his students. He also removed my facial nerve to be on the safe side and didn't have the TIME to do a graft. He told my husband after the surgery, what he had done and said he would do the graft after radiation. He did not once before the surgery, tell us about any risk of paralysis. He was a liar and a coward and every time I think of him now, I hate him. I wish he could pay for what he's done to me but there seems to be little chance of exposing him for what he really is. When I went for radiation I asked to go to a closer center and went to [location]. Before radiation they did some tests and found I already had numerous mets to my lungs and kidneys. He didn't need to remove the facial nerve to prevent spreading, it already happened. The original tumor was there for a long time, according to the doctors at the new center. I could still go on and on but basically I was misdiagnosed for 5 years and I still wouldn't have found out it the neurologist had not helped. I still feel so angry.
_______________________________________________________________
[My wife] was misdiagnosed for over a decade, before dx of acc, a year of same docs rubbish before mets were detected in lungs 5 years later._______________________________________________________________ My family doctor gave me antibiotics for the "sore" I had on my soft palate. When the "sore" didn't go away after a few months, he said I should see an ENT. The ENT told me I had a tumor and I had a biopsy. The biopsy was sent to my father, an oral pathologist, who had several people read the slides and they decided it was either polymorphous low-grade adenocarcinoma or ACC. Personally, we were all hoping to polymorphous low-grade adenocarcinoma but when the pathologists had a bigger section to analyze (during the first surgery) it was determined that I had ACC. It is my understanding that until 1983 polymorphous low-grade adenocarcinoma was confused with ACC. When people speak of a less aggressive form of ACC, they could mean that it's really polymorphous low-grade adenocarcinoma and not ACC. ACC, as we know, is high-grade and aggressive where polymorhpous low-grade adenocarcinoma is not very aggressive. _______________________________________________________________
I felt a small lump under my left jaw bone at least ten
years before my first
surgery in 1988 revealed ACC of my right submandibular gland. During those
previous years I was told it was probably just a swollen gland as a result of
some dental work. In 1983 an ENT told me it was a calcium deposit or stone
in the salivary duct, but I need not be concerned....only if it should become
infected. When, in 1987, I became aware of what seemed to be rapid growth he
thought it might be best to remove it, however, he never mentioned the
possibility of it being cancerous.
The pathologist's report came back with a dx of ACC. By then it had invaded
the muscle and bone beyond the gland itself. Within the next five years I
had two modified radical neck dissections to that same area for recurrences
and one modified radical neck dissection to the left side of my jaw where ACC
again reared its ugly head. I have also been living with lung mets since
1993.
_______________________________________________________________
Well, there was a minor misdiagnosis, they guessed that my Mom's tumor
migrated up her facial cranial nerve to the cavernous sinus, from a minor
basal cell carcinoma (skin cancer) Drs felt they could not biopsy. She had
maximum radiation, which would have been the correct course of treatment
anyway. It was a pretty good guess. Now we have had a biopsy that the
tumor returned in her eye socket area, and biopsy was
"adenocarcinoma'"
following removal of the tumor (and her eye) we know it was Adenoid Cystic
Carcinoma. most likely originally too.
First symptoms were undiagnosed from Thanksgiving to end of January as her
symptoms progressed--3rd nerve palsy, etc. There was a definite delayed
diagnosis as local docs/radiologists could not figure it out. That was
excruciating.
_______________________________________________________________
Misdiagnosed as Sinusitus.
_______________________________________________________________
I was also misdiagnosed. The first doc told me that I had a
nerve on the
scalp to rise to the top. He wanted to give me a shot of cortisone to shrink
it back. I refused. Then 5 years later, I as the tumor enlarged, I was told
that it was a sebaceous cyst. 1 year later the headaches started. I went
back to the doc and he insisted that it was some type of carcinoma. From
there I went to an oncologist who did blood work, the only thing that showed
was the globulin fractions were high but not enough to be concerned about. He
sent me to a surgeon who said it was a cyst and tried to remove it. Once he
opened it said he did not know what it was but he felt sure that it was
benign. He and the oncologist told me that it was a benign neoplastic
growth that did not spread. However, this was after the path report showed
ACC with peri-nerve invasion. I began researching and found this site and
learned what ACC was really all about. I had the growth for 6 years before we
learned what it was. The surgeon tried twice to clear margins and failed. I
quickly went to another doc who jumped on it. I left me my research and he
began his own research. This Doc was able to clear margins but had to rotate
my scalp due to the size of the tumor and the loss of muscle, tendons and
skin. I was turned down for radiation and chemo, so we just wait. However, I
am having many other problems with my throat and ears that I am now concerned
that it has mets.
_______________________________________________________________
Yes in my case – misdiagnosed.
_______________________________________________________________
Yes I went without being properly diagnosed also. I'm not sure for how long - it was at least several months. The tumor was at the base of my tongue - I had chronic sore throats and after eating anything spicy my throat would stay sore for a couple days. I was told that I had sinusitis, bronchitis and enlarged tonsillar tissue (my tonsils were removed when I was four years old) when I started having difficulty with swallowing and coughing up bits of food I became more insistent and was then referred to a specialist, ENT, who still did not think it was anything to worry about because I did not drink or smoke and I was not elderly. Before I went to see him I had researched the lump on my tongue looking for tongue cancer - I found a picture of a tumor growing on the back of the tongue - one picture was of a benign tumor and one was a malignant tumor - mine looked just like the malignant one - I told the ENT that I felt that it was cancer and he discarded that. At my initial visit he was instructing a student doctor and at that time he said that I had three neoplasms. I asked him to schedule the biopsy soon - because I was in the process of losing my health insurance - the first surgery he missed the tumor on my tongue - the one that I had been most concerned about - he had removed a cyst further down my neck - which came back as a tonsillar cyst - the neoplasm that had been seen in my sinus supposedly disappeared before the surgery and he had forgotten to put the tumor on the base of my tongue on his surgery order form - so when I went for surgery thinking he was going to biopsy my tongue tumor - he only went down and removed the tonsillar cyst. Because the device that they put in your mouth for surgery covers your tongue he did not even see it. When I looked in my mouth after surgery I was surprised to see that the tumor was still there - when I went to see the ENT after my surgery and told him that I was surprised to see that the lump was still there - he looked surprised and didn't seem to know what I was talking about. Then he claimed that he had drained it and it apparently came right back. What he didn't know was that I always get copies of all of my medical records because doctors do not always tell you when things show up - I had already gotten copies of my surgical report as well as pathology and there was no mention of his having done a biopsy or draining off any fluid - the truth was he had simply missed it altogether because he went by his surgical order when I went in and the lump on my tongue was not mentioned in the surgery order. I then waited another couple months because he still was not concerned about the tumor on my tongue. After the second surgery I got a call from his partner saying that I had this rare cancer and that I needed to come in to see the ENT again. There is more but I think this answers your question.
_______________________________________________________________
I had a small lump in my right lower lip which was resected and sent for biopsy. When the pathology report was sent to my doctor it correctly stated ACC of a minor salivary gland. My misdiagnosis then occurred when my doctor apparently misunderstood the report and told me that it was BCC - Basal Cell Carcinoma, not malignant however could regrow locally, I did not read the report. After regrowth, and another resection the next pathology report was read correctly and I was hurriedly sent off to a plastic surgeon and had half my lower lip resected thankfully with clear margins.
_______________________________________________________________
My husband's submandibular gland was misdiagnosed, pathologist said it was normal. Because my husband also had lung nodules he underwent a thoracotomy and the initial specimen came back as ACC usually related to submandibular gland; because they were not sure if the ACC was primary or secondary they did a right lower lobectomy. I then called the ENT surgeon who contacted the pathologist and his revised reading was ACC. My husband has also had a right upper lobe and left upper lobe thoracotomy with wedge resection. Also a new 8-mm nodule is identifed in left upper lobe.
_______________________________________________________________
I'm not sure I would describe my situation as true
misdiagnosis; the doctor
heard the raspiness with his stethoscope and since heart and chest x-ray were
clear, suggested that I see an allergist. I delayed doing that but after I
did and found no allergic condition, I was referred to an ENT who ordered the
CT Scan after scoping through the nose and down the throat. Surgery and
radiation followed soon after.
A closer example to misdiagnosis occurred after a few years post op and post
radiation, when the breathing difficulty returned. I had been going for
regular scans and since nothing showed up, that doctor said it was scar
tissue causing a narrowing. He didn't want to remove it surgically, because
another procedure would cause more scar tissue, etc. I then ended up at a
"prestigious" cancer center, got a bronchoscopy which came back
negative, but
I ended up needing an emergency tracheostomy because the bronchoscopy had
irritated my trachea enough to cause it to start closing down. My third major
medical center had a surgeon with experience in reversing tracheal breathing.
It was a 3 step procedure, the first involving removal of scar tissue. Of
course, under that tissue was ACC in full bloom and thus, the cancellation of
the original plan.
_______________________________________________________________
I had a lump for at least five years, that I can remember. Asked several doctors, including my dentist. Was told it was a blocked salivary gland, and swollen lymph node, but that I didn’t need to worry unless it moved, got bigger, or started to hurt. I didn't pursue aggressively. After several years, it started to ache so I made an appt. with an ENT specialist. He examined me and told me it was nothing. About a year later, I happened to mention this lump to my daughter’s doctor. He became concerned and sent me for a CT scan. It showed a mass. Went back to ENT, said not to worry, but needed surgery to remove it. It was after 1st surgery, tests came back ACC. A week later 2nd surgery, radiation etc.
_______________________________________________________________
I went to the dr for a persistent sore throat and was told it was allergies. I went again and I had a biopsy which came out negative. I returned due to continued sore throat and was told the I would just have to "learn to live with it". Two years later I saw another ENT and he did another biopsy and BINGO!
_______________________________________________________________
I was misdiagnosed for years, partly by me not pestering my GP enough not following up treatments that didn't work etc.