Discussions By Condition: Cancer

wrong diagnoisis was right diagnoisis

Posted In: Cancer 16 Replies
  • Posted By: Anonymous
  • April 20, 2006
  • 09:15 PM

In 2000 I had a lump removed (partial) from my parotid gland. The removal was a partial because the ENT did not want to damage nerves in my face-after three days in the hospital, I was told that the lump was not cancer.
In 2001 I got a second opinion and was told after surgury that it was cancer and the new ENT was able to remove it without damage to the nerves. No treatment was done and in 2004 it returned. ANother surgury and this time 36 radiation treatments followed in late 2005.
I now get checked every 3 months and my life is upside down-I need to hear from someone with the same condition.

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16 Replies:

  • I'm hoping you can help me. For the last 3 yrs. my dad was diagnosed with Bell's Palsey. 2 weeks ago, he ended up having surgury - a cancerous, malignant mass - parotid cancer. They took out his gland and some cancerous lymph nodes. His face now has no feeling and is numb. They want to do 30 follow up radiation treatments, but at this time he doesn't feel up to it (all of his other tests, before surgury, were fine: bloodwork, chest x-rays, etc.). We were told even after radiation the cancer would probably return. Could you please tell me any/all problems that you had with radiation treatments and any problems afterwards? My dad is 83 and was in good health until all of the wrong diagnosis.Thank you.
    Anonymous 42789 Replies Flag this Response
  • This is so unfortunate. Was the lump (partial) removed sent off, or evaluated at the hospital? Did they talk about a section sample during your surgery? Did you ask for and receive the pathology reports? Email me at sbork@medlawresources.com if you would like more info.
    Anonymous 42789 Replies Flag this Response
  • I, too, was diagnosed with Bells. Six years of misdiagnosis - my problems were getting worse and worse. Two diff. neurologists - both wrong. Their "expert" opinions went from Bells to depression meds to suggesting counseling for hypchondria to a final solid scolding of "Hey lady we've done all we can - you just have to get on with your life!" Well the story has a positive twist. I begged my primary for one more referral and he sent me to Strong (University of Rochester) Neuro Dept. I was there for several hours and finally an MRI was scheduled. Parotid cancer! Unfortunately the cancer had spread through the facial nerves and into the mastoidal wall. The surgery was extensive, the treatment hellish radiation, many many surgeries followed to correct my paralyzed face enough to prevent drooling, vision, my looks (as much as possible), etc. I still have no feeling, I think I still look hideous (but most people tell me I look great comparatively speaking) and I am here today I believe because of surgeons who extracted the cancer and the radiation oncologist who had to torture me to save my life. Of course as the "cancer free" countdown begins understand that with any kind of radiation to the head or neck - teeth and bone are damaged enough to cause future problems. As I began to lose teeth on the radiation side I needed to submit to hyper baric oxygen treatment to prevent my bone from shattering. Parotid cancer is very real and very much a life lasting ordeal. But I do live to tell of it. Please tell your family member to do every part of the treatment his doc recommends. Without radiation his chances are 50/50 at best. I am six years out and let me tell you it really is with you in some capacity forever.I do have a question to pose for anyone with any expertise. Even though I am 6 yrs out and a 49 year old woman, I am having a bad patch with my health of late. Emotionally wrought (I know sounds like menopause), serious weight gain (no standard diet works past 5 to 10 pounds) and truly I eat minimal junk but lots of whole grain, veggies, fruit, read labels, no trans fat, low to no bad sugars), temperature problems, blasckout spells, constant fatigue, weird head aches at the base of the skull in back, ache like the flu all the time. I know this sounds like CFS which is often associated with post cancer and other stressors. Let me just ask this - what is the likelihood that cancer is back and somewhere in my glandular system? Does this typically happen with parotid patients? I don't want to go with a misdiagnosis of CFS and have cancer growing in me again. Please advise because I do have an appointment with an endocrinologist upcoming soon. Thank you. Tess
    Anonymous 42789 Replies Flag this Response
  • Hi,I am scheduled to have parotid surgery this Tuesday at Strong Memorial hospital. My FNA showed "abnormal, Atypical, suspicious cells, and my MRI showed 1 cm gland. I am very nervous as I don't really know what it is. My surgeon says she will do a frozen section while I'm under, and will be aggressive depending on that outcome. Is this what you experienced at first?
    Anonymous 42789 Replies Flag this Response
  • Deb 3 - sorry I haven't checked this site in awhile. By now you have had your surgery and the cells have been tested. Since I was a Strong patient - I am a local. If you too are a local and would like to call me for ANY questions or support PLEASE do! 723 8954 Ask for Terry. Listen if you are to have radiation call me - I had the very BEST radiation oncologist in the entire community. Keep believing! A hard thing to do - I sure know that first hand!
    Anonymous 42789 Replies
    • August 19, 2006
    • 01:42 AM
    • 0
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  • My Father had a lump ten years ago, on the side of his face, but it wasnt that large and didn't do anything to him, so he went to the doctor, and the doctor didnt do anything, and left it, and told him it was fine, knowing my Father, he left it because it didnt bother him, and the doctor said it was fine. My Father just recently passed away from Parotid Gland Cancer, because just last year after the lump started to grow, and cause his face to go numb, he went to the doctor...who said that he coughed to hard and thats why he had it, this doctor dicked around for two months, before sending him to a specialist, who then told my Father that it may be cancer, sure enough it was. My point being this doctor, was the biggest ******e ever, and is known for his horror stories with other patients, during that two month period, my Father could have been diagnosed earlier on with cancer and, he could of won, but they caught it in the later stages, as well, I am so *****d off that this doctor, didnt even do a ******g x-ray nor a biopsy ten years ago when it was first spotted.
    Anonymous 42789 Replies
    • August 28, 2006
    • 00:44 PM
    • 0
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  • In 2000 I had a lump removed (partial) from my parotid gland. The removal was a partial because the ENT did not want to damage nerves in my face-after three days in the hospital, I was told that the lump was not cancer.In 2001 I got a second opinion and was told after surgury that it was cancer and the new ENT was able to remove it without damage to the nerves. No treatment was done and in 2004 it returned. ANother surgury and this time 36 radiation treatments followed in late 2005.I now get checked every 3 months and my life is upside down-I need to hear from someone with the same condition.A partial parotidetomy was performed for the removal of a tumor in the left parotid at Walter Reed Hospital in D.C. in Sep 2002. The diagnosis was that the tumor was not cancerous but after three months, the tumor returned. An FNA was performed along with three aspirations which removed some residual saliva. A second parotidectomy was performed at Walter Reed in Aug 2003 and the diagnosis was inconclusive. Specimen was sent to the Armed Forces Institute of Pathology and their finding was low grade mucoepidermoid carcinoma. No further treatment was recommended except to be checked every three months and the checks consist of MRI and blood tests. No further cancer has been detected but I do have the beginning of the same initial senstaions that I had before the first surgery in the right parotid gland, a tinglinging sensation, soreness, and some numbing. Visits to ENT specialists, MRI, and ultrasound have not indicated the presence of another tumor and my personal feeling is that the condition is viral in origin. ENT doctors have not given me a diagnosis for the right parotid symptoms and I am looking at alternative therapy as well as other ENT doctors here in Europe where I am living.
    Anonymous 42789 Replies
    • August 30, 2006
    • 00:00 PM
    • 0
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  • In 2000 I had a lump removed (partial) from my parotid gland. The removal was a partial because the ENT did not want to damage nerves in my face-after three days in the hospital, I was told that the lump was not cancer.In 2001 I got a second opinion and was told after surgury that it was cancer and the new ENT was able to remove it without damage to the nerves. No treatment was done and in 2004 it returned. ANother surgury and this time 36 radiation treatments followed in late 2005.I now get checked every 3 months and my life is upside down-I need to hear from someone with the same condition.On May 20, 2006, I had a pain in my left temple & numbness on the rest of my face and scalp. I went to the ER believing that I was having a stroke. The ER did a CT scan and validated that I did not have bleeding in the brain. Since, I have melanoma, I went to the Melanoma Oncologist at the local Cancer Clinic for an evaluation. I had a PET Scan which came back negative and a MRI on the brain and rest of my head which indicated that I had a nodule in my right Parotid Gland. The melanoma Oncologist said that I did not have a recurrance of the melanoma and that I should see my Primary Care Physician for follow up. I went to my PCP & she took a blood test for temporal arterioritus which came back negative.Went to a Neurologist who could not give me a diagnosis.Hence, I went to MD Anderson in Houston to see my Head & Neck Doctor who had a PET which came back positive for Cancer and a MRI which came back positive for Cancer in the Parotid. An Ultra Sound and FNA validated the diagnosis of Cancer.I had a Superficial partotidectomy and neck disection Post Surgical Pathology indicated Metastatic Melanoma in one of the five intra parotid lymph nodes.5 high doses of radiation.any questions feel free to contact me a tlkmmk@gmail.com
    Anonymous 42789 Replies
    • August 31, 2006
    • 05:05 PM
    • 0
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  • Hi-I signed in wrong today...forgot my screen name:) I will give you a call tomorrow. I did have the surgery...took 5 hours as the tumor was wrapped around my facail nerve that controls my right eye. Dr. Miller did not remove the whole gland since I had been under so long. The results are negative, although after reading some of these stories...it sounds like the tumors return cancerous after surgery. I don't know if I should have a second opinion since my FNA was "abnormal"? I would welcome any advice. Deb3- signed in umder peaks4me...Thanks! Deb
    Anonymous 42789 Replies
    • September 11, 2006
    • 00:35 AM
    • 0
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  • I am so sorry for your loss. I can't imagine how horrible this all has been for you, your father and your family.
    Anonymous 42789 Replies
    • September 11, 2006
    • 04:47 PM
    • 0
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  • Thank you, it was hard, and it just makes you wonder, if our doctor had of done something ten years ago, would he still be alive? I'm still building up the nerve to go and speak with the doctor, to go through my Fathers file, and ask him directly, why he's so incompetent...this isnt the first time either, something like this has happened in regards to this doctor.
    Anonymous 42789 Replies
    • September 12, 2006
    • 08:25 PM
    • 0
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  • I am in NY having found a lump in my right cheek I was sent to a plastic surgeon where an FNA was done and a second lump located in my lymph gland same parotid gland. Both diagnosed as suspicious for malignancy. Went for a PET scan - body free of disease but.. another location in right base/rear of tongue. This had no previous biopsy. The surgeon felt that he feels a lymph node possibly not related to the other two. Since the FNA did not confirm benign/malignant, WHY???? He wants to discuss with the radiologist the third location. He wants me on the table where he will take sample of tongue area and biopsy in the OR. If found to be of same cell type and cancer ,he will consider radiation and close me up. If not, then we will proceed with parotidectomy and removal of this third area also. I have no clue what should be done regarding this. Would there be an alternate way to find out if the PET scan can be reinterpretted? Is it ok to ask for my films to have some other radiologist read them? Should he go back in and get more tissue from the first lump and get a better diagnosis before surgery procedures? Oh my.. and the roller coaster is getting more crazy as I ride.
    Anonymous 42789 Replies
    • September 23, 2006
    • 06:13 PM
    • 0
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  • When you have only a portion of a tumor removed from the parotid gland, there are cells left behind which cause reoccurances later. This is why, when dealing with parotid tumors (or any tumor, for that matter) they MUST be removed in one piece, with clean margins. For more information, see Patientsforum.com, where you will find 100's of people who have had parotid tumors.
    Anonymous 42789 Replies
    • October 4, 2006
    • 03:34 PM
    • 0
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  • Hi,I am scheduled to have parotid surgery this Tuesday at Strong Memorial hospital. My FNA showed "abnormal, Atypical, suspicious cells, and my MRI showed 1 cm gland. I am very nervous as I don't really know what it is. My surgeon says she will do a frozen section while I'm under, and will be aggressive depending on that outcome. Is this what you experienced at first?While an FNA may pull cells from a tumor that show benign, it's only pulling cells from that specific area. Many patients will find that they either have a malignant tumor behind a benign tumor, or that the cells weren't pulled from the correct area. Either way, while the surgery is being performed, the doctor will do some testing while they still have you open, and then send the tissues off for further testing, after surgery. Once you have the stitches (or staples) removed (usually 7 - 10 days after surgery), the doctor should have the final verifications back from the lab. Luckily, over 80% of these types of tumors are benign. You can get a lot of information regarding Parotid tumors from patientsforum.com. We have 100's of people from all over the world who share their stories (before surgery, after, and if necessary, during radiation). There's great helpful hints under the "Site Map" page, plus you can look up under Users Profiles for recommendations for doctors or hospitals from past patients, who rate their experience, their doctors, and more. You can also view pictures of patients before surgery, and what their incisions look like right after surgery, and then later.
    Anonymous 42789 Replies
    • October 4, 2006
    • 03:41 PM
    • 0
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  • I haven't gotten back here in a long time (2nd post in). Dad, 83, was mis-diagnosed twice by the "specialist" (whom I'd like to see held responsible, but it wouldn't change anything for dad). Anyways, Dad opted not to have the radiation treatments as we were also told it would probably recur. He went to Erie (Hammott?) and they were excellent and went down into his neck and got everything that was there. This was about 6-7 months ago. Dad's done real well for that time period - we got out everyday (and still do). He has trouble with that side of his face (numb, drooling, etc.) and mastoiditis. We just had more tests done last week - it has metathesized into the lungs now. But I feel dad did better on his own and we've gotten quality time we wouldn't have had if he'd gone with radiation and all that seems to follow. He's not in a lot of pain, his weight is finally holding steady - but the latest tests say things aren't good.Just wanted to update on my earlier post. I hope all of you do well with your treatments. I hope that people who are mis-diagnosed will somehow all get together someday and hold the doctors responsible for not knowing the job they are trained to do.
    Anonymous 42789 Replies
    • December 17, 2006
    • 00:33 AM
    • 0
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  • Wanted to comment on the loss of a loved one and the medical interventions.I lost my mother 2 years ago to Colon cancer which metastasized to the liver the lung. She had anemia for 2 years prior to her cancer diagnosis, which we NOW know is a significant possible diagnostic cause for anemia.Many of my family members blame the family physician for missing the diagnosis but, being a medical professional myself, I realize that all these people who are doctors and specialists are only human. We expect them to be beyond error and to work unprecedented hours without a break, thinking about complex medical situations with hundreds of variables and very few "for sure" facts.I try to do everything I can for MY patients, but I'm darn sure I miss many diagnoses. I mean, can anyone really say they are perfect at their job? I think we go to specialists putting them on a pedestal and thinking they will solve all the problems. Who could live up to that expectation?I don't blame my mothers doctor....heck he's still my doctor and my wife's. But I am sure I inform myself about every test being done, what is normal and abnormal, what options are and what alternatives are out there. Who cares more about me than ME anyway, right?But I also strongly feel that medical professionals should be doing everything they can to evaluate patients completely and, MOST importantly, THINKING! I find very few medical professionals stop and think about the whole patient...they rely on tests which everyone assumes are infallible (MRI, CT, etc) and are truely VERY fallible.Anyway, Merry Christmas everyone and God Bless. Here's to hoping for continuously improving medical knowledge.mpoling
    Anonymous 42789 Replies
    • December 24, 2006
    • 03:09 PM
    • 0
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