It is with great sadness that I have to convey that Aimee passed away on December 28th. Her memory will be kept alive in the "Odds of recurrence/Great Quotes" thread that she started http://www.oralcancerfoundation.org/forums/ubbthreads.php/ubb/showflat/Number/66336/fpart/1

Aimee was 32 at her passing.

I am particularly saddened by the loss of yet another OCF poster. This woman was so young, and had so much of her life ahead of her. While I do not want to turn this thread into a referendum, I want all of you to note that like so many that I have talked to in the last 5 years, her disease was missed by doctors of various disciplines several times, even after it was brought to their attention. Second, that her treatment was by a surgically trained ENT who did not have her interface with a multidisciplinary team. I am increasing disturbed by what I am seeing in the US when people get treated outside a multidisciplinary environment, and surgeons tell their patients that they are cancer free because they got clean margins. Micro mets are not detectible on scans till developed into a tumor of a size that the scan can see. During this period if they are in the lymph system they can move to vital organs rapidly. I personally believe that many people treated this way are getting incomplete treatment, and that is causing a great deal of the early high recurrence rates associated with oral cancers. Aimee was let down by the medical system and all the doctors that came into contact with her, at least up to the point of her recurrence when she finally had chemo and radiation.

Clearly OCF's work to educate people is not limited to the general public, but to members of the medical and dental community that continue to miss identification of early disease, or worse, actually dismiss it when it is brought to their attention as a possible differential diagnosis. If her treatment had been full spectrum the first time around, would she even have had a recurrence so rapidly afterwards?

Hi Brian. I think this is a really really good point. Another friend from this board passed away November 5th. She was 32. Got many different opinions as what route to go- and sought treatment close ot her home which was not a CCC.

I was 33 when diagnosed but went to a general fam practitioner 3 times between October and December 06 and a dentist before I went to another general practitioner in January of 07 who finally referred me to an ENT who took a biopsy. Meanwhile I felt worse and worse and had cancer in my body 3 months longer than I had to.

Its frustrating that this happened and I hope it doesn't effect my outcome. Once I got to the right person I was treated very agressively and my surgery was performed with the utmost care. Getting there was the big battle. I knew something was wrong. the spot on my tongue felt hard and was a really weird shape and color but the first Dr. brushed me off and made me feel silly for even asking if she thought it might be cancerous or something to worry about.

anyways! It seems pretty logical that had these two women been given the medical guidance they needed and deserved - they might might still be alive today. I've been lucky so far- hope my luck continues!

Thanks so much for everything that you do here. This site has helped me out a lot during a very difficult year for me.

Kate

Brian, i surely agree 100% on this one. I had told at least 3 Drs in erooms to check my tongue and it went right over their heads. I was getting scoped every 3 moths for Barretts esophagus and aske my surgeon to check my tongue on hiw way down with the scope. When I came too he already had an appointment with a cancer Dr for me. That is when things finally started to get rid of this disease. As you know I went to a CCC for surgery and treatment, 1 of the top 15 in the world. Dr told me he had removed all of the cancer and I didn't need Rad or Chemo. Now I have it on both sides of my tongue and will have to go thru hell for his mistake. Teeth have to go and will have the Rad seed implant and Chemo after the all clear from the teeth removal. Yes sir, they all can screw up and we have to pay the fiddler. The Radiologist is the same one that said the margins were too close and I needed th Rad Chemo combo. He's from a small hospital at that. I guess the big guys don't have all the answers. sure temps one to get a lawyer.

All,
I find myself with a heavy heart after reading the above post. My deepest sympathy goes out to Aimee's family, loved ones and to all of you who have been affected by her passing.
I have to say I agree with Brian and fail to understand why a diagnosis of "cancer" of any type is not immediatly referred to multidisciplinary care. I am disappointed that Doctors and Dentists, and almost embarrassed to say that I fall into this catgory, don't pay attention and listen to their patients. Due diligence; would most certainly prevent many of these situations. I would rather have a petient be mad at me and leave my care because of a negative biopsy report that they felt was unnecessary than have a patient pass on because I didn't have something investigated.
Brian, the U.S. is not the only country as I'm sure you are aware, where this is all too common place. I have seen my fare share of it in Atlantic Canada and it is an area of great concern for me. I believe there are not enough CCC clinics. How do we fix that?
Brian, I am certain that your efforts have saved many lives, but I know every loss to OC, and especially the loss of a member of this site must affect you. I don't know how you keep going. I am glad you do and I am sure I speak for many when I say, "Thank you for all you have and continue to do."
This site is by far the best OC site I have seen and I am proud that I can participate. I refer everyone I come in contact with who has a question or query about OC to this site and make them aware of your selfless, monumental efforts that have gone into this site and the OCF.
My cancer was not OC, I was misdiagnosed by three surgeons for three years before I finally found someone who would listen to me. The news of Aimeeb's passing has weighed upon me because it is similar to my own experience.

My thoughts and prayers go out to all of you.

Mike