I went to the doctor numerous times i had my ears checked, mouth check etc. I broak out with cankersoars all over my mouth i have this white line on the left inner cheak and i got this ridge tendon feel in my cheek i feel it with my tounge
I have this peircing pain in my right ear its hurting as i type this. I am so scarred i dont wanna die.. the ear nose and throat specialist didnt really look in my carefull i had this little lump in the soft part behind the roof of the mouth on the left side and its not on the right. He said it was a absessed ulcer and proscribed this ointment for it. i feel like kaiser is over looking my symptoms! please i need some advice i am only 28 years old i am going to get married to the love of my life and i want to grow old with her. I love her with all my heart!

Pat,
It's too soon to panic! It sounds to me like you have an infection of some type. Cancer is characterized by LACK of pain. If the ointment doesn't cure it, ask them for a biopsy.

It sounds like you are really panicking and I don't want to add to it, but I must clarify something. Cancer in its early stages might be characterized by lack of pain, but my daughter has stage 4 tongue cancer and now a recurrence, and her first symptom was pain in her ear, then pain when swallowing. She had no visible lesions, spots or lumps, just pain. GO TO ANOTHER ENT. Get a second opinion. If there is actually a visible lump there, request, no, DEMAND a biopsy.

It probably is NOT cancer, but you need to find out. And you need to do it soon. If you feel this doctor is not addressing the issue sufficently, find another. Find a head and neck surgeon or ENT that specializes in cancer.

Best of luck to you.
Rainbows & hugs,
Rosie

Oral cancer is not characterized by a sudden outbreak of numerous sores, which sounds more like a herpes simplex outbreak. Stress can cause herpes to manifest itself if you have it. Your post certainly sounds like you are under stress... At your age you are also not a likely candidate for this type of cancer unless you are a chronic chewing tobacco user, and you didn't mention anything about the risk factors in our life. Like the others have said, go to see a different ENT, or someone who specializes in oral pathology. They will be able to tell you what's what. Any ointment that the doctor gave you for use in your mouth is likely only to reduce the effects of the symptoms and not to treat disease. My guess is that he gave you something to take away the discomfort of this herpes outbreak and is waiting for a couple weeks to go by when it will clear up on its own usually. There is no treatment for it and it has to run its course.

Brian,
First of all, I don't want to offend you because I think what you are doing with this website is wonderful. I also am going to try to find the time to write a testimonial to help in getting sponsors.

I have a problem, though, when you tell people that they aren't likely candidates because of their age or their lack of tobacco use, etc. While it may be true that the majority of oral cancer victims do have a history of tobacco and/or alcohol abuse and are generally older and also more often male, it is also a fact (which you have stated yourself) that this cancer is striking younger people with no known risk factors.

I understand you don't want to panic people unnecessarily, but I think you do them a disservice by telling them they don't have to worry too much because they don't fit the profile. If any of the known symptoms are there, they do have to worry. Not panic, but worry enough to be sure they are being checked out thoroughly by a qualified professional.

I thought the same as you when reading about the mouth sores, but one thing caught my attention. PIERCING EAR PAIN IS A SYMPTOM of oral cancer and one that shouldn't be ignored. Granted, it could also be a symptom of something else, but it is an issue that needs to be addressed. Ear pain was Heather's only symptom for several weeks, then the pain when swallowing followed. She absolutely does not fit the profile for oral cancer in any way whatsoever. But that doesn't alter the fact that she is very likely going to die from it.

I'm sure by now some of you are probably tsk, tsking thinking I shouldn't be scaring all the newbies. Well, I'm sorry, but maybe they need to be scared. They need to be scared into action. They need to be told to get a second opinion. They need to know how important it is to get a biopsy. They shouldn't be lulled into thinking they don't have to worry just because they don't fit the profile or because their dentist or doctor isn't informed enough to be able to properly diagnose oral cancer.

Well, I'm done. I'll get off my high horse now. But, be assured, I'll be here posting for quite some time to come. I feel very strongly that "not fitting the profile" doesn't mean diddly when dealing with oral cancer.

Sorry, no rainbows or hugs today,
Rosie

Rosie,

Thank you.. God Bless you and your daughter
I am going to see if kaiser has a diferent ent my parents think I am hypercondriac. its nice to have someone who is understanding. did your daughter experience any severe fatigue? or any like spraining feeling pains in her front or rear? of her neck were any of her lymphs swollen?
did she have any thick ridge like feeling in her cheek as i do. please let me know. you and your daugther will be in my prayers

Patrick Emanuel

Never be afraid to speak your mind to me, I've got a thick skin (at least the part that wasn't radiated) and I am perfectly capable of defending my statements. Also this forum is intended to allow the free exchange of ideas, including calling on the carpet, someone who has posted something which is inaccurate or may hurt another person physically or mentally. So here is why I said what I said.

While your daughter is a prime example that there are no absolutes, STATISTICALLY speaking, 75% of all oral cancer patients are or have been tobacco users, most for long periods of their lives. The greatest risk factor for OC is still advanced age, since the vast majority of those who get this disease are over 55. Of the 25% that were not involved in tobacco use, over 85% of that 25% are still over the age of 40, (a study just about to be published) not in their twenties. The average dentist sees at least 3 lesions a day which mimic oral cancer but are not. Therefore, there are MILLIONS more of these non-malignant lesions occurring every year than the 30,000 oral cancers which strike people. If we sent everyone running to their doctor that had a lesion of some sort in their mouth, ringing the alarm about oral cancer, we would unnecessarily be panicking millions of people that do not have oral cancer. This does not serve them or us in our desire to help people. It is no help to someone to move them to action through unsubstantiated fear. We want to help them make good, fact-based decisions. This does not mean that I don

While Rosie and Brian seem to contradict in various aspects regarding diagnosis of OC, they try to hit the same target--- giving some guidance to people at a loss. I think people on board here are mature enough to make their own judgement. Rosie,it hurts when reading some of your recent posts about Heather's recurrence. It seems to me that you are on the verge of giving up.Don't ever give up. I know the rainbow may be hiding away now but who knows one day it may appear again.There are always miracles.Even though I am very far away from you, my heart goes with you and Heather.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Brian,

Actually, I thought perhaps a doctor should biopsy the lump, not the sores. And you are right, in my sorrow, anger and confusion over Heather's condition, I came on too strong.

Patrick,

I believe you need to get a second opinion, especially to address the issue of the ear pain and the lump. Brian and the rest are right, though, the sores and the ridge you describe do not sound like cancer. Heather didn't have any of those symptoms. No sores, no ridge, no fatigue, not even a lump. It is very unlikely that you have cancer and hopefully, getting an opinion from another doctor will set your mind to rest. Just be diligent and be aware of any changes or any new symptoms. Wishing you a happy outcome.

Rainbows & hugs,
Rosie

Rosie, you are an incredibly generous woman to take the time to try to help others, even at a time when your own needs are so great. Your passion to keep others from making a mistake by not seeking treatment, or by blind acceptance is also commendable. We all have found your posts on this board to be articulate, helpful, as well as heartfelt, and I want you to know that my comments should not be construed as any kind of personal attack, but merely aimed at finding balance.

I am scheduled to go see an ent through kaiser unfortunitly its going to be the same guy but i will make sure he check outs everything. today i was starting to get these red circular splotches where the swelling on the inside of cheek and some minor tenderness under the left side of my jaw and neck and slight soarness on the right rear behind the roof of my mouth almost in the throat area. My apointment for ent is april 2nd pray for me.

Patrick Emanuel

Brian,

I didn't take your comments as a personal attack, but thanks for clarifying that.

Now that I have your attention, though, I would appreciate knowing if you or one of your loved ones was in the position Heather is in, where would you go for a consult and/or treatment?

As a quick recap, on Aug 21st, she was diagnosed with stage 4 base of tongue SCC (I've quit kidding myself about the stage being a 3/4. It was 4.). On Sept 4th, she had very aggressive surgery - partial glossectomy, mandibulotomy, selective (modified radical) neck dissection. The surgery was supposedly successful with clean margins. 4 nodes were positive, although the largest was only 1.2 cm, so surgery was followed by 7 weeks of RAD, which started Oct 30th. The RAD was interrupted because of infection, so an extra 3 days was added.

After RAD, she had 1 good week, then started to go downhill and never really recovered. The docs suspect this second tumor was growing while she was undergoing the RAD. They don't know the size, but are pretty sure it is much larger than the first and is growing rapidly. The MRI of the brain is clear. The bone scan and CT scan of the abdomen, chest and lungs is OK. The head and neck area shows a large "lit up" area and they're not sure exactly what is tumor and what is from the RAD.
the tumor is in the oropharyngeal area. The surgeon suspects it is in or near the throat because she had a feeling her throat was constricting, plus she has 2 areas draining in her neck. She was on a heavy duty antibiotic for 10 days and it didn't clear it up, so they suspect it is at least partially drainage from some necrosis of the tumor. The one spot may be the tumor itself pushing out. He also suspects it may be moving near the base of her brain.

Her pain seems to be increasing daily. She has a trach tube in again to help her breathe. I'm hitting a brick wall when it comes to getting a clear opinion on any clinical trials. I have found some trials, but am lacking the expertise to evaluate them. The surgeon is pushing for chemo to start ASAP. He feels surgery is out of the question, but is willing to refer us to another surgeon. The chemo doc is trying to get her a consult set up at Johns Hopkins, but is willing to try to get her a consult at any hospital of our choosing. But she also feels some type of chemo needs to be started ASAP.

I agree treatment has to be started ASAP. The only question I would like answered first is whether or not there is a clinical trial that should be considered first. From what I've gathered, for some of the trials anyway, if she has chemo now, that will disqualify her for the trial. But I don't want to hold out a false hope that a trial might be the answer when I truly have no idea in the world which way to go.

If we get a consult at Hopkins soon, I should at least get the questions about the trials answered. But, as always, I value your opinion and expertise. You probably know as much about which direction to go as do the doctors.

I guess what I'm really asking is - do you know of any trials that are even worth considering at this point? Or would you agree that getting standard chemo started ASAP is the thing to do?

I know her chances are slim at best, but since this tumor is growing fast and chemo targets fast growing cells, it might give her a decent shot at remission. But which chemo combo holds the most promise? I know I'm asking a lot and I don't really expect a definitive answer. A little guidance would be greatly appreciated though.

If you'd rather, feel free to e-mail me instead of posting on the board.

Rainbows & hugs,
Rosie

There is a lot I don't know about your/her situation, and that may negate the value of what I say here. For instance I do not know what kind of team of doctors have been treating her and recommending to you what you should do. Knowing that they were not some small town doctors with limited resources or experience would make me feel better. (PLEASE if you are a small town doctor, do not email me regarding this comment; it is only reasonable to assume that major cancer center doctors have a greater exposure to things and greater resources at their disposal.) Next, regarding clinical trials. In my own opinion, I believe that they are a path of last resort. You don't even know at this stage if conventional chemotherapy will work or not. Opting out of a known technology, with known results, for an unproven technology or treatment doesn't make sense to me. Has someone lead you to believe that chemotherapy will not work for her? If so, what was their reason for believing that? I would want to see that she was in a major cancer center and have those doctors decide which chemo agent is the most appropriate given the tumors location and staging. I believe that getting her into a facility like Hopkins, MD Anderson, Mayo, or Kettering, if it is within your financial abilities to do so, outweighs any benefits of being treated in the comfort of a home environment that you/she is familiar with.

Given what little I know about the details, I am with the surgeon on this one. Starting a therapy now like chemo seems the prudent thing to do. It will not take long to determine if it is having an effect or not. If not, you can fall back to the next level of treatments, clinical trials. In the meantime I would want to be sure that you are getting professional opinions from more than one doctor, and hopefully from several of different disciplines. This is all so much easier when they are together at Hopkins or where ever. Your posts indicate that you do not have a belief that she will beat this, and I would like to know what has been said to you that makes you feel this way. It may provide some insight to me. As always, if there is something within my small realm of influence that I can do to help you, please do not hesitate to ask.

Patrick, Your doctor should be doing some basic testing to determine if you are fighting a significant infection. This would at minimum involve blood work. You should be able to ask him what he thinks this is, and why he thinks that. You should be able to leave his office with a complete understanding of what is going to be done to determine a definitive diagnosis, and what treatment is going to be instituted to get you healthy again. Do not be afraid to ask tons of questions; do not leave without answers that give you some peace of mind and a sense that something is going to be resolved. If he cannot tell you after some basic tests what it is that is wrong, he should refer you to someone else that will help him determine what is happening. Do not accept a wait and see attitude from him if things are getting worse. Let us know what happens.

Thanks Brian. I wanted to strongly suggest that Heather go along with the recommendation that she start chemo ASAP. I was hoping that was what you would say. I was the one who first brought up the subject of clinical trials and now regret that I even mentioned it.
The reason I started looking in that direction is because the surgeon first said her chances are less than 10%, then amended that to "actually even less than that". He then mentioned that hospice care may be a consideration for the near future. He was looking at a time frame of less than a year. To give him some credit, the next day he did say that since this was a fast growing tumor, that chemo might have a fair chance of halting it. But he definitely does not have the positive attitude that he had when we started this odyssey in August.

A couple of the OCF members have e-mailed me privately and have given me an extra helping of support and of hope. Thanks Dinah, Donna & Eileen. We should hear something today about when we can get a consultation at Johns Hopkins.

Financially, we are not well-to-do, but we have excellent credit. I've always thought it ridiculous that credit card companies keep increasing our credit limit , because there's no way we would ever put $25,000 on a credit card, but for this, we certainly will if necessary. After this is all over, I will just have to go get a job again so we can pay it back! :p

Thanks again everyone for all the info and support.
Rainbows & hugs,
Rosie

Rosie, I know exactly what you are going through I had Danny in at the Mayo clinic they did another Biopsy at the end of Feb. and told us that it needed surgery but was not so sure that he could make it through it with the amount of weight loss and the way he continues to be losing and it would be such a radical surgery and the Mayo doctors said that Chemo would do no good because it will not shrink or halt the tumor. It never really went away it just shrank in size and continued on growing down in the base of his tongue. We talked to the ONO and she agreed that we should not have the surgery and just live one day at a time and come to grips with this because she gives Danny about 8 months as a educated guess to survive. He opted not to take his whole Jaw off or the third or more of the tongue out because its so radical that they do not think it will help. I will pray for your daughter she is young and Danny is 55 years old so she probally has a better chance. Bobbie 232

Dear Rosie,
Wanted to discuss a couple of things re Heather and trials.
I have just completed 7 weeks rad to tonsillar stage 4 SCC with lymph mets to left and right neck. Prognosis was v poor and unlike Heather they(Vancouver oncologists)ruled out surgery as would have been too drastic a cure????
I was put on a trial which had it's origins in France and another from Italy, which recommended double chemo - Carboplatin and 5 FU's together - which was supposed to be most effective but also most severe treatment. The chemo was to be given 3 times - weeks 1, 4 and 7.
The results of older trials have shown that most patients cannot tolerate these high doses so they have reduced them to 2 sessions only,within the 7 weeks (which is what i received) they say any more could produce permanent side effects which out-weigh benefits.They explained that the chemo itself didn't treat the cancer but made the radiatiom more effective. Right from day 1 my lumps went down and are all but gone - to the point where there was not enough of a lump to biopsy on the left side.It's impossible to say whether still cancerous or not but am hoping the tiny bit left is just scar tissue. My radiotherapist is still worried that cancers in the young tend to be more aggressive.The chemo made the lymph node soft and although the side-effects are grim they are nothing to be afraid of - if the tumour can recede that quickly...... it's got to be worth a try and soon.
Like Heather I am a young woman with no risk factors but that's another topic! I am just mad that it took them 6 months to finally treat me and feel sure that my staging would have been different with a whole different experience, we must push for timely diagnosis.
I want to wish you all the best with your decision-making . Rest assured we are all rooting for you and Heather, whatever you decide on. I am worried about relapse too but will hang on in there and keep fingers crossed!
Bye for now, best wishes,
Frances.

Frances,

Thanks for the info. I have added it to my list of things to discuss with the onc. Sure hope your cancer is totally gone. I wish you the best.

Bobbie,

I am so sorry to hear about Danny. I surely hope they are wrong. Heather's surgeon also said he wouldn't recommend operating. It would just be "heroic surgery", probably wouldn't work anyway and she would be terribly disfigured. I can't help but think about people like gnelson and Packer66, though. I know they are still having reconstructive surgeries and it has been terribly hard on them, but they are still alive and supposedly cancer-free. I think if chemo doesn't work, it might be worth a shot, with a different, more confident surgeon, though. Of course, it is ultimately Heather's decision.

Evereyone,

As far as clinical trials, I have changed my mind again. I just re-read an article I found in a magazine from last year. It states that about 75% of children with cancer in the US are in clinical trials and only about 5% of adults are. And the survival rate of the children has increased progressively with the increased number enrolled in trials. Sounds to me like it is worth considering.

We do have a consultation at Johns Hopkins on April 3rd. We also have an appt with the local onc on Monday because Heather's swelling has increased just over the last 24 hrs. It had been her cheek and jawline that was swollen. Now the swelling has expanded to include her eye and lip. If the onc thinks it is critical, we will start standard chemo Mon. Otherwise, we will go to Hopkins on Thurs and see what they recommend.

To all who have e-mailed me privately, Thank you! You are all so wonderful and caring. And Eileen, you and Brian may disagree frequently, and I do respect Brian, but I think you are an angel!

Wish us luck!
Rainbows & hugs,
Rosie

Rosie, glad to feel that your strong will to fight the battle with Heather has returned.For your information, I am also in a clinical trial. I was chosen because of my advanced stage. The tumors in my tonsil and left neck were very very large.Judging from my education background(that I could discipline myself during treatment), my strong will to win and most important, my relatively young age ( compared with Heather, I am very old), the team of doctors decided to put me in the trial.Once you are in a trial, you are more closely watched by the doctors and receive more frequent check-ups.Of course in Heather's case, timing is of paramount importance. Hope that the doctors will choose the best treatment for her ASAP. Take care,

Karen stage 4 tonsil cancer diagnosed in 9/01.