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Time it took to get a diagnosis

Alan_Robinson
0 Recommendations

I am a 13 year survivor of squamous cell carcinoma of the tongue. I would like other members of this community to discuss their diagnosis story.

I first had sour on the side of my tongue that would not heal early in the summer of 1996. I went to see my general practitioner and she suggested that I use a canker sour medicine. It was not until I saw a dentist nearly two months later when my tongue was getting larger and the sore more painful. She knew immediately what was wrong and sent me that day to an oral surgeon for a biopsy. It still took nearly 3 months from my original doctor's visit to the final diagnosis. How about you? Did you have problems with medical professions that resulted in later diagnosis?

Explore topics in this discussion:

Cancer Surgery Arthritis Acid reflux GERD Head and neck cancer Pain Oral cancer Lupus Fibromyalgia HPV Speech therapy

18 replies

sayl09

I had a sore in my mouth, that started about two years ago, I thought it was a canker sore so I used meds for canker sores. But it was not a canker sore. I finally went to my family Dr. on the end of June and he sent me to a ENT clinic. They to biop and found out it was oral cancer. I had surgery on July 8th, 2009 and now on August 10th we'll be starting radiation treatments. So I feel that they didn't waste any time.

katsarcow

Yea, it took going to the doctor 5 years and when a lump showed up on the side of my neck, they dicked around 3 more months and then told me it was stage iv tonsillar ca. That was 10 years ago. I had no mouth symptoms, just swollen lymph nodes and he just shined them on. I had constant pain and inflammation and they said it was arthritis, lupus, fibromyalgia, ... go figure. The doctor jumped thru hoops to get me the best treatment and care. He was sure glad when I moved out of state and he wasn't responsible for me anymore. He's lucky I let him live....

gsp48

Had a lump in my neck July 1978. Thought it was allergies,sore throat. Had shot of penicillan.Lump got smaller. Blood tests okay,but felt run down. They went for a biopsy and found the squamous on the tonsil scar tissue behind the lymph nodes. Had radiation 40 treatments,saliva and lymph removed on one side and no problem since 1978. I was a non smoker,just a fluke.

drnia

My husband's dentist noticed white spots in his mouth and on his tongue 19 years ago. They were diagnosed as dysplasia and watched for 3 years. in Feb. of 1993 he began to have face pain but it took until June until he got the diagnosis of cancer of the tongue. He had a radical neck disection followed by 35 radiation sessions. He was cancer free for 6 1/2 years when he had another malignant area removed. He had three more surgeries, the last in the fall of 2008. All were considered primaries. This spring he again began to have facial pain and in June of 2009 he was diagnosed with squamous cell carcinoma. He had major surgery, removing tumor from the tongue, floor of the mouth and jaw. He had the fibula removed from his right leg which was used to reconstruct the jaw and a flap attached to replace the floor of the mouth. He only has a small amount of remaining tongue. He is now 8 weeks post surgery. He has a g-tube and is not yet able to have any food or drink by mouth. He tires easily but is making a slow but sure recovery. He can has begun to speak and is understandable a good part of the time. He is very determined to recover and live a "normal" (whatever that is) life. He has jerry-rigged a portable iv pole that he can attach to a table in a restaurant and we just returned from a 5 day trip to NY with our 13 year old grandson. It was physically exhausting but he was determined to make the trip as scheduled and was an amazing trooper. We have eaten out frequently and see friends and family regularly. He is 67 years old and has retired as a result of the most recent surgery. I feel his positive outlook and strong will have definitely worked to speed up his recovery.

drnia

I originally had some lesion picked up by the dentist which proved to be dysplasia. It was supposedly lasered of in late 1991. 18 months later, I had some soreness that gradually worsened (Feb). I complained about itand over a 3 1/2 month period, I was seen by neurologists (difficulty swallowing), Dentist (they thought me teeth wefre causing the sore in my mouth), pain relief specialists (who did nerve blocks), and ENT people. It was not diagnosed until I insisted on a scan with contrast. (They originally did one without contrast which did not show anything). By the tine the surgery (biopsy) was done, and invasive cancer was present. Two days later the definitive surgery was done disclosing a stage IV cancer of the base of the tongue with positive lymph nodes up to 2 cm in size. This was a delay of about 3 months in the diagnosis. I now have minimal tongue tissue left. I am on gastric feedings, and I have had major mouth reconstruction (fibular bone graft). I am stilkl on the right side of the grass, and supposedly, all the cancer has been removed. I have had bilateral radical neck dissections (although at 16 year intervals).Much of my discomfort might have been prevented had the removal been complete with the laser, or even if the cancer would have been correctly dignosed earlier.

Shellygirl

My husband, Joe, had an irritation near his jaw for about 8 months til he had a biopsy. It was not constant, so the doctors thought it was the beginning of a necrosis due to prior radiation. They didn't think it was cancer because his prior surgery was 5 years ago. It was confirmed squamous cell on the jaw bone. This past March, he had another neck dissection and the jaw was removed with a fibular flap. Thank God the cancer did not spread to his tongue. He is on the mend and having difficulty with speech and swallowing. He has had three surgeries in all.

mimi2005

I was misdiagnosed for about 6 months. In June of 2004, I began to have a sore throat and could actually see what turned out to be a tumor on my toncil. I went to my family doctor several times between June and January of 2005. I would wake up at night feeling like I was suffocating because the growth would close my air passage when I laid down. I would wake up gasping for breath. My doctor repeatedly treated me for a severe sinus infection. Finally, in January my Mom was ill in intensive care and I was concerned about visiting her if I was contagious. At this point I drove resting my head on my hand to help support it and was so sick, it was hard to carry on my normal life. I went online, listed my symtoms and repeatedly found either absess of toncil or cancer. I went to my doctor who again diagnosed sinus infection. I told him what I had found on the internet and his reply was to "stay off the internet because it would scare me to death." I said I wanted to go to an ENT and he said take another round of antibiotics and if they don't work he would refer me in a month. I took the antibiotics for 3 days before I told my husband one night I was afraid to lay down to sleep. He took me to ER where they tested me for mono and for an absess. Both tests were negative. The doctor felt the tumor and told me to see an ENT the next day. I did and was diagnosed in his office with cancer of the toncil and had surgery the following morning, followed by chemo and radiation. The surgeon was unable to get a clean margin and the cancer had spread to my throat. I had stage IV cancer. My best advice is we each know our own body best, if l ever think something is wrong again I will not take as long to have a second opinion.

Heathy82

In June 2008, at the age of 26, my voice went hoarse. After 2 weeks of no resolve, I sought medical attention. I was found to have a non-specific lesion on one of my vocal cords. I was told it was GERD and put on acid reflux meds. After a couple of months of no change, it was mentioned that a biopsy would probably be a good idea, to rule out cancer. However, in the next couple of weeks I got married, took a honeymoon, moved out of state and took a new job.

I promptly followed up with a new doctor who readily dismissed the idea of cancer saying I am too young and have no risk factors. I switched doctors and heard the same thing--there is no way it is cancer, it doesn't look like cancer, etc.

On June 27, 2009 I underwent an elective surgery to improve my voice. My "lesion" turned out to be much larger and much angrier than anticipated. Pathology report came back "highly suspicious for invasive squamous cell carcinoma." This is 14 months after my voice initially went hoarse.

Yes, I am 27--very young for this cancer. Yes, I have never smoked and drink very minimally. Yes, I have laryngeal cancer that was not caught for 14 months.

drnia

I am now 3 months post op. My speech is improving and I get stronger each day. I still have the gastric tube but I am eating about 90% of my food by mouth. It is a struggle because I still can't close my mouth, have only 3 lower teeth, and only have a stub of a tongue. I have to get the food to the back of my mouth with a fork or spoon, but I am doing it. I blend some food, mash some with a fork, sometimes use a syringe to get the food to the back of my mouth. Liquids are not easy and I use a syringe to "drink". I am determined to get rid of the tube. I will get dental implants this winter and hopefully as the flap swelling goes down and I can close my mouth things will get easier.

hikergirl

My dentist found a white spot in 2006 & I was referred to an oral surgeon (in a small town) who removed it - at that time it was in situ. It reappeared on my gum in 6 months and I underwent laser treatment by a different oral surgeon and was told to have a graft performed on that area. For some reason I did not feel in my "gut" that I was healed, even though all the experts including my dentist told me to get the graft. When I started experiencing pain I went to UC San Francisco where they performed a biopsy - the squamous cell carcinoma is now in my bone and I'm not looking forward to the 16 hour, extensive surgery to remove most of my jaw and lower teeth. My new oncologist says that by not heeding the advise of my dentist and oral surgeon I probably saved my own life. The big mistake I made was by not taking my own intuition seriously and going to a large hospital with full trained experts in the field of oral cancer. I'm trying not to beat myself up over it but would like to emphasize that small town doctors have huge egos and should not be treating oral cancer unless they are fully trained in that field. I will be on a feeding tube after surgery and would like to hear from others as to what to expect with that. I too, will need dental implants later on as well as speech therapy. My new, top notch, world famous surgeon from UC San Francisco says that 60% of the patients he sees were NOT smokers (I never smoked) and that it was spontaneous mutation of the cells. The small town oral surgeon kept saying "it's so strange that you never smoked" like he didn't really believe me! What's strange is that he was so uninformed and behind the times. Don't trust small town doctors - they don't see enough of these type of patients and they don't keep up on it like they should. Go to the experts even if it's inconvenient and expensive. It's your life.

paaatriot101

Hey just my two cents here on length of time to get a diagnosis...
5+ years of being prescribed every type of new antidepressant that came on the market at the time.
Who knows if I did not completely lose my voice still would not know.
Could not get any of them to listen to me, oh it's all in your head, fybromyalgia, etc... now I can say no it's all in my throat:)
I would say we need to speak up to our doctors more, except that I tried. I have had dr's :"terminate" our relationships because I refused all the lyricas', galbaplatens, wellbutrims, phenobarbitol at one point, amtryptoline, and lately savella. Telling me " If you're not going to take what I advise and prescribe I see no point in continuing treatment" 2X, by different docs.
Oh well what are you gonna do:) Hang in there all have a good day tomorrow:)

pjradford

Hikergirl, it is really too bad that doctors don't try to rule out cancer in the very beginning instead of trying everything else first or assuming that we don't have cancer. I was fortunate and even though I live in a very small town my doctor was not satisfied with the "inconclusive" test results from the needle biopsy or the CT Scan so he ordered a second test of both and was finally confirmed as SSC of the tonsil. I had a feeding tube for 8 months and had no problems at all with it and it saved my life because I could barely sip water. You will be asleep when they insert the tube and I had to stay one night in the hospital as a precaution. The tube is several inches long and you just curl it up and tape it against your stomach. Sometimes it can sort of get in the way and may get a little sore where it is inserted but it is not bad at all. Also when it is time to remove it you will get nervous but it does not hurt and it only takes a couple of seconds when they just yank it out. It will begin to heal very well in about a week. That feeding tube is a life saver so just be thankful you can have one to keep you alive. Also my insurance paid for the liquid protein that I had to pour into it. Let me know how you get along with it and I wish you the best. I'm sure you will not have any problems and will do fine.

hikergirl

Hi pjradford - Thanks for the reply, your encourgement is very helpful. My oncologist says I'll have a naso-gastric tube which will be inserted before I leave the hospital and it will stay in for at least 6 weeks. He says not even water by mouth until I've healed. I'm happy to hear that insurance will pay for the food replacement liquid. I'm just obsessing about the feeding tube, I don't know why, it will probably be the least of my problems. Did you loose weight while on the feeding tube? I'm already under weight so I'm stuffing in the food now to gain as much as I can before my surgery on Dec. 10th.

Alan_Robinson

hikergirl, ask your doctor for a PEG tube. It is a lot more comfortable than a nastro-gastric tube. He may need a GI doctor to put it in but you will feel less like a patient once it is in.

You will not lose weight with the tube feedings. there are some very high calorie formulas that make sure of that. I have been a PEG tube twice for oral cancer and I can tell you it makes all the difference in keeping your weight up.

Alan_Robinson

Hikergirl,

I am also not a smoker and 38 when I was diagnosed. This is true for a growing number of oral and head and neck cancer patients. Talk to your surgeon to see if they can test the tumor they remove for genetic markers. They have found the HPV virus in a lot of non-smoker tumors. I wanted to do that on my last surgery but they could not find a tumor.

pjradford

I am surprised about the having no water by mouth, but maybe your situation is a little different from mine, Water is the only thing I could drink (sip) and I had to have it because my mouth was quite dry. My doctor never even mentioned anything about not drinking water until healed. Please don't obsess about that tube even though I can understand why you would because I did not want to have one and kept thinking I would not need it because I would still be able to eat but I was extremely wrong about that. Really the tube became such a part of me that I was worried about giving it up!! If I had it to do over again I would have gotten the tube right away when my doctor recommended it, but I put it off until I got weak and needed it. Yes, I lost a whole lot of weight which for me was a good thing. I was told I would lose a lot and to eat a lot before treatment so I just "pigged" out and did like they said by adding butter, etc. for extra calories and I gained about 12 pounds before treatment. In Dec., 2007, before my treatments started in Jan., 2008, I had to have oral surgery to remove all my back teeth. That was a big shock to me to have to have all that done, but I told them to tell me whatever I had to do and I would do it. I am still in the process of many dental visits to fit me with partials for the back. At least my front teeth were good, but for the rest of my life I have to use dental trays filled with fluoride once a day for my teeth to prevent decay because once you've had radiation it changes everything. I would advise you to eat every fattening thing that you love in large quantities. You will never love any food the way you did before treatments. I have to make myself eat now because I don't won't to get weak. If you have any more questions don't hesitate to ask and I will tell you as much as I can. Have a great day. Paula

Alan_Robinson

Piradford, I lost my ability to swallow two years ago after surgery. So I have no water by mouth. After my hemiglosectomy, water was the first thing that I started drinking but milkshakes and smoothies were more nutritious and tasted better.

Alan_Robinson

Piradford, I lost my ability to swallow two years ago after surgery. So I have no water by mouth. After my hemiglosectomy, water was the first thing that I started drinking but milkshakes and smoothies were more nutritious and tasted better.

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