Definitely, Don't give up! I agree with ConnieFL. There are ways to get through the financial portion of this disease. My son had no job, no insurance,and was going through divorce. He was able to get a pay't plan going and found out that one of the drug companies affiliated with the hospital had a plan where deserving or qualified patients would have the bill "forgiven". The hospital allowed him to pay any amount monthly for the different departments that were sending bills, even as low as $5/month. He has survived all of the above, plus best of all he has survived oral cancer - almost 4 years, now! You can do it, too!

Hi Connie

I'm feeling better today and more logical. It is just difficult to go to a doctor and they talk down to you and dismiss everything you say. How could this doctor decide in ten minutes by looking at my tongue with a stick if I have cancer or not. Doctors need to weigh what the patient is saying along with what they see.

To me it is like when someone is murdered. All evidence points to the fact that the person was murdered but if they have no body they have no case. Sometimes years later they decided to build a case on circumstantial evidence, they wait a long time because they no the chances are poor of a conviction with only circumstantial evidence no matter how strong. No visible tumor, no cancer.

I have read that it is not that uncommon for people to have cancer and the primary tumor is never discovered.
Also that it takes one billion cancer cells to make a 1cm tumor.

I do have a trust issue when it comes to doctors. It is not lack of respect but it is hard for me trust.
Anyway with all that being said (blowing off more steam), sorry I have made an appt. with an oral surgeon for December 8th..
If he says he doesn't see any reason to suspect cancer then I will let it go.
Thanks again for your time and information. This sight and people like you are a life raft.....
Hugs
Brenda

Hello Anne-Marie

So happy to hear your son is doing well! My daughter had thyroid cancer but it was caught early and she is doing well also!

The hospital has worked with me and forgave my bill last year when I had my gall bladder removed. I qualify for the local free clinic but every time I go I see someone different, sometimes a doctor but not always. They referred me to an ENT and he said he thought I had acid reflux. There is just no way I believe that is the case and then yesterday was told possible allergic reaction to my bp meds that I have been taking for ten years.
It is the fact that I don't feel I'm being taken seriously that has caused me to become much more paranoid then usual.
Taking the advice from this forum I have made an appt. with an oral surgeon on the 8th of December.
I will come up with the money somehow!
Thanks again and I will let you know what he finds out.

Hugs
Brenda

Brenda,

I'm glad you have an appointment. Hope I'm not stepping on any toes, BUT if he says it doesn't look like cancer please make sure you have a biopsy of the lesion on your tongue no matter what, it will give you peace of mind. If it was me I would want all the lesions biopsied.

Don't ever let a Doctor talk down to you that happened to me in the beginning, but like I said before if I knew then what I know now maybe things would have turned out differently.

This is how different Dr.s think.....My Dentist of 11 years looked at the lump on my tongue he said, let's keep an eye on it...back to him again 2 weeks later it was getting sore and bleeding he gave me steriods...I called him 2 weeks later he was on vacation I went to another Dentist he took one look at it he said..Cancer...I jumped out of the chair. He was so upset he never charged me. As you can see they all think differently.

You are your own best advocate. I know your tired, sick and weight loss, I was in the same position..don't give up!

Take care and God Bless..

Brenda, glad to hear you are going to an oral surgeon. I agree with Connie, make sure you have your lump biopsied. Please try to keep yourself busy so you can keep your mind off this. Worrying will never change anything, it only makes you feel bad. Hope to see you come back with the results as negative.

You should check with a different ENT. Or go to an ER and tell them of your symptoms. They work with people with no insurance and they have programs that help wipe your hospital bills clean!

BTW, it is totally possible that this is not cancer, don't give up on it so easily!! A hard lump on ur nose can be many things, and the stuff going on inside ur mouth can be many things as well!!

You can't just say, i have this this and this going on, so i will read the internet, and go with what looks to be most fitting!! Its not how it works, and often the internet is wrong! You might be getting yourself all worked up over nothing!!

You need to be seen by a doctor, I suggest a ENT but at least go to ER and start there if you are so worried about no insurance and what not!!

Also check with your county about possible health insurance programs!! Here in minnesota, we have a few different options for low income people to get health insurance through the county!!

How silly are you going to feel if you get ur "things in order" and nothing happens? or you get them in order, and go in and find out that the thing on ur nose is nothing but just hardening tissue, and you have a combination of acid reflux and maybe an infection in your mouth??? You owe it to yourself to get checked out!!

Oh and by the way, I had a lot of your symptoms that you have in your mouth before my cancer, and yes, it was all due to acid reflux from my hiatal hernia!! So go get checked out!!

oh and if they don't want to biopsy lesion on ur tongue, or even if they do, sometimes it's better to ask for a scan first, sometimes a scan can rule out the need of a biopsy, if the scan doesn't find positive, then no need for biopsy!! And a scan covers many areas!!
Glad you got a appt made with a oral surgeon! Make sure you tell them about ur worry with your nose as well!!

Beth

Interesting you should mention the ER because of new symptoms, a friends concerns and much more pain I did go to the ER yesterday.

I was treated in the hallway by a nurse practitioner whom after I mentioned five symptoms asked if I suffered from panic disorder? She felt my lymph nodes and looked at my tongue and throat, ordered a fast strep test. It was negative. I had mentioned I had seen an ENT and she said well if you have seen a doctor why are you here? The only thing we do is treat your symptoms and refer you to a doctor or specialist.
A doctor also came out looked at my tongue and said he was surprised the ENT didn't do a biopsy. I said the ENT said he didn't see anything that looked suspicious enough to biopsy as in a hard lump.I told him I had an appt with an oral surgeon on December 8th. He thought that was a good idea and said he doubted with the holidays I would be able to see anyone sooner.
No blood tests were done, urine, anything other then bp and temp.
They dx me with Thrush and gave me a script for mouthwash and a note to follow up with an oral surgeon.
Perhaps I'm wrong but I feel if I had good insurance and a job my experience would have been much different.


I have now cancelled my plans to travel to Atlanta four hours away for Thanksgiving as I'm in too much pain for the trip and I know i would be unable to eat anything.

My new symptoms are severe headache for three days,increased ear/jaw pain. Also either I have developed a lot of white lumps on my bottom gums are the bones are showing through.
My upper gum looks abnormal to me also and one area does have a new lesion and it is purple looking.
I showed a friend my mouth and gums and they were very concerned about how it looked and suggested I get to a doctor sooner then the 8th which also prompted my visit to the ER.

I am in shock as to how quickly my mouth is changing.
I don't feel silly about getting my things in order because I have not felt well for over a year.
The truth is I don't plan to have any procedures done if I do have a cancer dx.

First of all I can tell you are a very caring person. It is horrible that you had this illness at such a young age. I admire your strength, dignity and optimism.
So please know that my question comes from deep respect for you.
You say you had similar symptoms to me and you believe it was acid reflux, which is what I was told also. Do you think it is possible that was not the cause and I ask this since you were dx at stage 3? To me it just proves my point that my dx is wrong. You had to have had a stage one and two.....you were under medical care and yet dx came at stage 3. How much time elapsed between your dx of acid reflux and your dx of stage 3 cancer?
My thoughts are because of your age you didn't fit the profile. The reason I don't fit the profile is that I never smoked.

As you can see I don't have much faith in doctors but I do have faith in science,It is absolute. So if I receive a biopsy then that I will believe. Maybe if doctors were doing more reading and actually listening to patients then there would be more dx of stage one and two and less three and four.
My fear comes from the fact that we are always reactive rather then proactive.

MY favorite quote is by Albert Einstein
"Insanity is doing exactly the same thing over and over again and expecting different results"

Lastly it is true I may not have cancer but I do have an illness that is greatly impacting the quality of my life and it is not acid reflux or Thrush!!!!!!!!

Warmest Regards
Brenda

Hi Brenda,

About the gums. Well while I was going thru radiation I was so sure that the bones in my guns were showing through as well. I could feel them touching my lips. My dentist said that my gums had always looked like that and I'm only noticing it now because I'm on alert and I'm always looking at them. I showed my gums to my sis at the time and she freaked out as well. However the dentist was right. My gums had always looked like that and I've only just noticed it cos I'm looking.

Hoping you get some answers soon.

Minh

Hi Minh

Thanks for your post! I just spent the last hour or so taking pictures of my gums and nose. I will post them with my other ones and to me they look scary. I know I'm really paranoid right now so that is why I'm taking pictures to verify to myself what it is looking like and to document the changes.
In the pictures I used a macro lens so it may be tmi for those nose photos lol, but I think I see some abnormal bumps inside.
Like I said the changes are happening so fast. Wish I could photograph the things you can't see like the back of my throat, inside of my cheeks and the roof of my mouth.
Will let you know when the photos are up.
Thanks again
Brenda