Hello,
My father has been having trouble opening his mouth and has been seeing his GP who felt he had TMJ and prescribed him NSAIDS. He is 71. Then he went to the dentist because he thought perhaps some of his oral pain could be an abscess, he also has pain up along side of his ear. The dentist told him he has a 4cm flesh colored tumor in the back of his mouth. We took him to a ENT who also felt a tumor in his chin area about 3cm and movable. He is scheduled for a biopsy on Monday and Tuesday he will here all of his options.
My question is, can this doctor who did not even feel his neck or ignored this mass in his mouth be in trouble for neglect? We are not looking to sue but he sure does not know what he is doing. Also I want to be supportive, is there anything I should or should not say. I understand that without the biopsy we are still not calling it cancer, but has anyone ever presented themselves with these sympyoms and had it be benign.

Misdiagnosis is a somewhat common denominator around here unfortunately. Consider that there are "only" about 30,000 cases of OC a year (compared to 1/2 million+ of other forms of cancer) . Does that excuse the doctor from malpractice? Only a personal injury lawyer can tell you that. GP's (and Dentists as well) typically get it wrong. The head, neck and throat area is very complex and hence it is a specialty onto it's own. He should have been referred to an ENT sooner.

My story is similar and it certainly wasn't benign. The tumor wasn't flesh colored though - it was tan colored. However there was no pain and it got up to 6 cm.

There are other things it could be - the biopsy is the definitive gold standard for diagnosis.

Please be aware that if his biopsy is Mon or Tues he may not get the results back immediately (depending upon the type of biopsy)so be prepared unless they have told you otherwise.

We all hope that it's not cancer but if it is you have found the best support site possible for you as well as your Dad.

I was misdiagnosed.I saw a general practictioner 3 times and asked specifically if she thought it might be cancerous-- the spot on my tongue. It was well documented. I had to have a full glossectomy due to her negligence in waiting 3 months to get referred. I approached 2 different well known lawyers and unfortunately due to malpractice laws the doctors are very protected against lawsuits due to all the frivolous ones people persued back int he 70's and 80's. It would take a lot of your own money to pursue it and even if you win it wouldn't be that much compensation that you would get.

Go ahead and approach legal counsil if you think you have a case but just kow that Drs. are very very protected.



Sad but true

Hello and thank you to everyone who replied. My families objective is not to sue this doctor but to protect any poor patient who may have this a** in the future. I feel as a GP and when a patient presents him with these kinds of symptoms, he should at least feel his neck for swollen glands or lymph nodes. He saw the 3cm tumor in his mouth and said nothing. My mother asked him to re-look at the tumor to make sure he did not miss it. The doc just called it TMJ and gave him some pain medicine. It was a dentist who finally said we have a problem.
My dad had a biopsy this morning and the ENT felt this may be lymphoma instead of oral cancer. He will tell us everything tomorrow or Wednesday.
My husband just finished 6 rounds of R-CHOP for Non Hodgkin's Lymphoma last month, he is doing great. One family member gets healthy and now one gets sick.

My heart goes out to your family during this tough time. I imagine it is a very trying time for you right now. We will pray for your father and husband!! Please let us know what the biopsy results are.

be diffiniton, I do not think you have a case for MP. Mp is difined as such,

1. Improper or negligent treatment of a patient, as by a physician, resulting in injury, damage, or loss.
2. Improper or unethical conduct by the holder of a professional or official position.


I also by what you say, I do not think this was the case. It could be he just missed the other tumor or inflamation. He is human. Heck, my ENT putted around for 3 weeks, suspecting cancer but, HE made sure he got HIS MONEY from me first before refering me out to another with more expereince. Now that was moraly wrong, but did not constitute Mal Practice. Just a piss poor morals and judegment on his part.

Bottom line is, you have found a Doc you like and trust. He is getting the care you deserve and need. I hope all comes back benign.

John
Stage4A Tonsil and back of tognue

I would certainly go back to the GP and tell him that he missed a cancer diagnosis and you want to be sure that doesn't happen again. You don't have to go through the expense and probably long term frustration of filing a lawsuit to do that. I had my plainly visible tongue cancer overlooked at two regular dental appointments (they were teeth cleaning but the dentist looked in my mouth at the end) and only caught at the third one. Right after that dental appointment, before I got into see the oral surgeon who did a biopsy and diagnosed it as cancer, I had a physical with my GP and he also looked at the tumor and said it looked to him like a spot on my tongue that was irritated by a tooth (which was what I thought it was).

Later when I saw him after my diagnosis, he did apologize for that and said he had actually never seen tongue cancer before. This was not a newly minted GP but a 40-somehting-ish GP who is very conscientious about learning whatever he can about diseases and medical conditions (makes regular rounds at our local hospital as I found out when I ended up there after treatment--and it is in part to see patients of his but in part just to learn). I am less forgiving of my dentist who never apologized for not catching it earlier - and had it been caught earlier I would not have needed radiation.

Nelie

If I had listened to my first 2 (out of 5) doctors I would probably be dead. Neither one Dx'd cancer.

Hello and thank you to all who replied. Your right, Doctors are human also, and this one especially needs to know what he missed, maybe it will make him a better doc. When my husband first went to his GP for a golf ball size tumor on his collarbone the doc said we will just keep an eye on it, and then changed his mind and ordered a x-ray. Thank God he did because that showed a 10cm tumor in his mediastium. Because we caught it so early he his now 100%
Today my dad will find out the biopsy results, I will post them later. Just posting here makes me feel better, thank you

Sorry, but I have to chime in here. I spent 20 years as a litigation attorney, including defense of medical malpractice cases. Nobody should be expressing views on whether or not anybody has a claim for malpractice here. Those are considerations vastly too complex for this forum, and are dependent on facts none of us possesses at this point.

I was visiting my ENT annually and having a scope done, due to sleep apnea related issues. It was about 6 months from the time of my last exam with him until the time the anesthesiologist discovered my tumor, about 2 cm. Did I have a claim? Maybe yes, maybe no. It was more important to me to devote my energies to treatment, revcovery and living the best life I could. I know my ENT was shaken by the diagnosis, and may well fear a suit, but that's not where my head is.

Sorry, but we shouldn't practice either medicine or law on these forums.

Hello,
The biopsy shows squamous cell carcinoma. Anyone who can share any stories of hope I'd love to hear them.

If anyone re-reads my original post or any one after that they would see our family is NOT interested in suing ANYONE for malpractice. We just want him aware that if someone presents themselves with oral pain and trouble opening there mouth maybe it would be a good idea to look further and maybe even feel the neck for enlarged lymph nodes. I'm not a doctor but but even I know that much.

I am sorry to hear about the biopsy results. Has he been scheduled for a PET/CT scan and any more doctor appointments? Please post all your questions and cercerns as we are here to help and guide you and your father.

Hello,
Dad had a PET scan today, he finds out the results next week. He did look at the CT scan results and read that there was metastasizing into a lob. I'm assuming that means the lung. My dad also has a spot on the side of his lip that looks like chelitis, except the skin looks black. I'm wondering if that is where this all started.

Lets all relax a little bit . This is supposed to be a supportive enviorment where people can share thier experiences and stories. I don't think anyone is telling anyone what to do OK????

You can absolutely write the Doc and bring it to thier attention let them know what happened so that they know what they overlooked so it hopefully won't happen again.I definitely plan on doing that too. I was just recounting my experiences with pursuing medical malpractice which were very upsetting as I defintiely had a very obvious case of misdiagnosis that has changed my life forever. I identify with feeling very angry adn sad that my health was further endangered due to a wrong opinion. . A site like this is for sharing our experiences with this disease. I wasn't giving legal or medical advice just informing of what I went through.

I absolutely know your frustration and exasperation very well. I was so so sick, not getting better fmr antibiotics and had a huge weird lesion on my tongue throat and extreme throbbibg ear pain yet I had to go to the Dr.3 times to finally get referred to a ENT who took a biopsy. I didn't fit the demographic being young and a non smoker. This general practictioner was reccomended to me through my OBGYN and had a good reputation too. Its a tough thing to go through.

My tumor was advanced stage 2/3. I had surgery radiation and chemo and a year later although my life has changed a lot (I have no tongue) but I'm doing really well now. Just take things as they come and stay strong and positive! There is always hope. KATE

Thank you Kate for sharing your story. This is such a stressful time for the family, the siblings are all fighting. Some kids dont want dad to know what squamous cell carcinoma is and some want to tell him the truth. He wants to know the truth. If we do say anything negative we are being screamed at. Everyone here is angry and upset and taking it out on each other. That is horrible, dad would object but of course no one is telling him because he has more important things to worry about.

I'm so sorry your family is fighting right now. I think it's pretty normal - even though this is a sickness and not a death there is still greiving to be done and anger is a very normal part of that process. Maybe everyone could step back and breath over the weekend. Do yall have a clear understanding of who will be your dad's primary caregiver, who will go to all the appointments and ask questions, be his advocate, etc. In my opinion that person gets the most weighted vote on what to tell your dad. And I'm sure your dad is not an idiot, I would assume he knonws something is going on and would appreciate the truth. My husband knows what he has and that it is very serious. He doesn't know the stats and prognosis conversation I've had with his docs, but that point is not as necessary or as value-added right now. This treatment is sheer hell and the patient needs to know that this is very serious so they don't decide to stop or not have the treatment, but there is no need to add to their emotional pain right now by telling them stats say they have x-percent. Besides they are people not stats. If he wants to point blank ask you - tell him you don'nt know - to ask the doctor. The doctor will know how to best answer your dad.

I hope I didn't come across as too aggressive or know it all. I am truly concerned for your father and your family and I have added you guys to my prayer list. I lost my mom to cancer and was co-caregiver with my father (I even moved in). And it's a really hard thing to watch your parent go through. It is killing me now with my husband, but in certain ways it was harder with my mom.

Anyway - I digress and have started rambling so I'll close now. Just know that this is a wonderful place to be and we will all do everything we can to support you. Please keep us posted.

Thank you Michelle, not at all too aggressive or a know it all, this is what I needed to hear. Especially about the people not being stats. Thank you

I was reading some stuff on the OCF site and came across a section you may want to read. here is the link - the whole segment is good, but if you are pressed for time scroll down and read the last two paragraphs from the bottom. They may help wiht your family. http://www.oralcancerfoundation.org/emotional/the_family.htm

http://www.oralcancerfoundation.org/emotional/the_family.htm

Hello,
Our family is enjoying the break from Doctor appointments and tests. We find out the PET scan results on Wednesday.
We have talked to several oral cancer survivors in the past few days, they are giving us a little hope. My sister works at a pharmacy and today they had a temporary pharmacist who is a OC survivor who had large tumors in his mouth similar to my dads and 13 lymph nodes removed in 2001. He called my dad and told him his story including some of the painful treatments but was proof that it can be done.

Good to hear your dad got to talk to an actual survivor. How is the family getting along? What did yall decided to tell your dad? I've thought about you alot the past couple of days and prayed for your strenght as you support your father.

Thank you.
We are only telling dad positive things, if he wanted to, he could go online and look this up, I'm glad he does not, it's overwhelming. I remember when my husband had lymphoma I never told him anything negative. I basically lied for the six months that he was in treatment. If he knew all the side effects of the chemo drugs, he would have been terrified.
So far the siblings are treading lightly on the subject of dad. Until we here the plan from the ENT, we are not saying much of anything and we all trying to absorb all this information. Thank you for your prayers, yesterday I brought dad some Holy water from Lourdes, so far I have shared it with several friends and family members who needed blessings.

Hello all,
The PET scan shows cancer in the cheek (3cm), throat(4cm) and a few small nodes in the lungs. He was very confident that radiation and chemo would handle the situation. Can this type of cancer be eliminated without surgery? I was not there with them at the appointment so I have a thousand questions. The ENT did tell them that chemo and radiation would not be easy and their days would be full of appointments. My mom is just so glad to have a bit of good news. Yesterday, I could hear the desperation in her voice.

You have to consider all options. Radiation and chemo are the primary tools, but if all else has not resolved the issue more tools have to be added. At this point I would want to know what the doctors feel his options are. Clearly in all these locations, surgery alone will not resolve things. It is possible that a change in chemo might help the lungs, but what works there does not always work in other areas. If their prognosis is dire, and I hope it is not, it may be time to look at clinical trial drugs and options.

Can anyone tell me why the doctors are choosing not to do surgery? I will not be meeting the ENT so unless I pressure my siblings to ask these questions, I will not know and can only speculate. I think the tumors are to large. Are there fast growing SCC tumors? I understand that no one here is a medical doctor and cannot give advice, I,m just wondering from anyone's personal experience.

My only experience has been that I had 2 suspected nodes in my neck and they found a small primary at the base of my tongue. I had 3 previous cancer docs tell me that they wanted to do a RDN or a PND but Moffitt said no surgery before concurrent rad/chemo but maybe afterwards. Their reason to me was that the rad should kill the cancer and they saw no benefit to postponing the killing treatment while I healed from surgery.

As far as the spots in the lungs, my MO once told me that if I developed any they would try another round of chemo before surgery was considered and it would also depend upon their location in my lungs.

The use of surgery is always balanced with the compromise in quality of life that it will cause. Base of tongue cancers for instance are never treated with surgery except in extreme cases, as the ability to swallow, speak and more are compromised forever.

Hello and thank you for answering some of my questions. My parents went to the oncologist today, they want to do a biopsy on the lungs to make sure they know what they are fighting. The CT scan shows four small spots on three of the lobes. They will be starting chemo shortly after that. A combo of three; taxoline, cisplatin and 5FU.
The Doc was very straight forward with my dad and told him this will be very hard on him. (He also has diabetes) He will be in the hospital for five days for the first infusion. My brother did not like her bedside manner and felt all this information was to much for dad who broke down pretty hard after that appointment.

Hello,
The radiologist-oncologist decided not to do any radiation on my dad at this time. From what I understand, they just want to get some type of hold on the metastasizing cancer cells and see if he responds to chemo. I think the areas in his mouth are just to large. The doctor could not look any of my family members in the eyes.

My prays are with your family. Lets hope that his plan works.

Well, my Dr in Columbus that did surgery to remove part of my tongue and did a left neck dissection told me that I didn't need radiation or chemo because he got all the cancer. This with 1.5 mm margins. Had a local RPO send me letters and call to tell me that the 1.5mm margin was way too close and the cancer would be back. To make a long story short, it was back in less than a ,month. The 1st Dr finally said it was back after a couple of biopsies and on both sides of my tongue. He did what he could do then agreed that I did need rads and chemo. I got those from the local Dr and was treated agressively. Had rads and chemo for 4 weeks, had to have my teeth removed, then had to have rad seed implants in my tongue. This is a very painful procedure but I had no choice.The surgery for implants was the 29th of Feb and I was out of my mind for a few days. LOL almost ended up in a rest home until I recovered. Hell, I beat that and was called a miracle patient. This was done in Wheeling, WVa by the RO that said I needed rads and chemo. I feel that I should have a case against the Dr in Columbus for his mistakes about rads and chemo. Maybe it was because of my age or the cancer study I was in??? This goes to show that the big guys screw up frequently too.

Wow! Thank you for sharing your story. Right now dad is in the hospital for a staph infection from the needle lung biopsy he had done on Friday. His fever was 103 and blood pressure was 91/50.
EzJim, how big was your tumor?

Hello,
A quick update on dad, he had two chemos for the golf ball size tumors in his tonsils and cheek (SCC) He does not get sick or tired from the chemo, in fact, after sitting in the infusion chair for four hours he went out to eat with friends. His WBCs are always great, his energy is fantastic, he played three games of volley ball last week.(72) The best thing here is he has no evidence of the tumors, they have melted away. That monster in his mouth is now a empty flap of skin where the tumor was bulging.
My dad prayed to God for more time here, it looks like his prayers are answered.

That's fantastic news. Let's hope all his future exams are unremarkable.

Hello,
A quick update on dad showed that the SCC in his lungs has disappeared. The CT scan shows a few small nodes in his face that they will continue to battle with chemo.

what chemo drugs and how many times a week is your dad getting

Thank you victor

Hello,
Dad is getting paclitaxol and carboplatin, he gets chemo every 21 days.
Where was that lemon sized tumor that was so large? My husband had a mediastium tumor with lymphoma that was eight by ten by eight. Two chemos for him and it melted away. This August he will be in remission for one year.
I am hearing a lot of great cancer survivor stories lately, they have come a long way with these new cancer fighting drugs.

Missy,

It would be helpful to us all if you could modify your signature line to include your dad's treatment history. For instance see mine below my name.