Hello,
My name is Elizabeth, I am 68 years old and I was diagnosed with a benign brain tumor in 1992, and with breast cancer in 2008. I was treated with 32 sessions of radiation for the brain tumor in 2000, and 35 doses of radiation and a lumpectomy for the breast cancer in 2008.
A few months later I was diagnosed with melanoma, twice, and I had surgery both times.
In June I felt a lump on the palate, and I saw my dentist right away. He referred me to an oral surgeon, ordered an MRI, and the next day he told me that I needed to see an ENT doctor and to have a biopsy done.
The ENT told me that I needed to have surgery first, and I had it on August 2.
The pathologist had to send the tissue to Stanford to get a second opinion. I live in San Diego.
I got the report yesterday, and the diagnosis is : hyalinizing clear cell adenocarcinoma.
My oncologist suggested that I have another surgery to remove some more tissue, and she also mentioned radiation.
I used to work for a radiation oncologist, and he said that he agrees with having another surgery, and that I shouldn't get radiation. He also said that this type of tumor may come back.
Has anybody on this forum had a similar diagnosis?
I am the first one in my family to be diagnosed with cancer. My mother and my grandmothers died of old age.
I am very nervous, I can't sleep, and at this point I don't know what to do.
I agreed to have the surgery, but I haven't scheduled it.
I may see another ENT doctor. The one I am seeing now hasn't mentioned anything to me. I had to go to his office to get the pathology report. He never called me to let me know about the diagnosis.
Since my surgery I haven't been able to eat solid foods.
Today is the first day that I feel like eating something solid.
I have been drinking Ensure, and today I am dehydrated. I am drinking Gatorade, and if I don't feel better tomorrow, I will get an IV.
I will appreciate any advice.
Thanks,

Elizabeth

Hi Elizabeth - You sure have been through a lot! I'm wondering about the ENT you went to and why he never let you know about the diagnosis regarding the lump on your palate. It's really important to make sure the ENT you go to has extensive experience in treating oral cancer patients. Your idea to get a 2nd opinion is a good one. Hopefully someone else here will be along whose experience can more completely respond to the issues you are facing.

Hi Elizabeth,

As Anne-Marie mentioned, most here would validate getting 2nd opinion at a CCC (Comprehensive Cancer Center), especially in light of the rarity of that type of cancer and what you've previously been through.

Here is a list and ratings of top CCCs

Cancer Center Ratings

Positive thoughts and prayers

"T"

Hi there welcome - and you are the true meaning of survivor. I would do as fish says - try to be seen by an ENT at a CCC - they will give you we the best advice for this toe of cancer. I wold do the surgery, and once margins can be established your team at the CCC will be able to make a solid recommendation. Hugs!

Yes do take your path results and visit a CCC asap.

Welcome to OCF, Elizabeth!

I agree with the others who have suggested a CCC is the place to be. They will use a team based approach where all the specialists get together and discuss your case individually. The countrys top physicians will usually be found at CCCs.

Best wishes with everything!

Thanks to all who replied.
If I don't hear from my doctor by Monday, I will definitely do the second surgery with someone else.
I have been thinking of going to the Mayo Clinic if I don't get the right answers here. The problem is that I don't like to travel. I still hope I can get a good surgeon, if not in San Diego, maybe in Los Angeles.
This is my fourth cancer, and all of them have been found at an early stage.I am hoping that i's the last.

Elizabeth

Your close to Texas Md Anderson is an awesome hospital

If your insurance (or your personal financial situation) enables you to go to one of the top cancer hospitals, such as M.D. Anderson in Houston or the Mayo Clinic, there's no reason to let geography limit the options for your treatment. A number of OCFers have traveled to M.D. Anderson or Memorial Sloan-Kettering, the top two cancer hospitals as rated by US News. Mayo is #3 on that list, which fishmanpa linked to above. In addition, Mayo is rated #2 by US News for ear, nose and throat, and M.D. Anderson is #3. (Johns Hopkins in Baltimore is #1 for ENT and #4 for cancer.)

That said, if you prefer to stay close to home, the Moores Cancer Center at UCSD is a member of the National Comprehensive Cancer Network, a consortium of 23 leading U.S. cancer centers that together develop the state-of-the-art treatment guidelines that are updated annually. City of Hope, near LA, is another.

Those two are also NCI-designated comprehensive cancer centers, meaning that they have gone through an extensive and lengthy process for recognition from the National Cancer Institute for the quality of their multidisciplinary programs in cancer research. NCI recognition opens the door to greater research funding and enables patients at those facilities to participate in a wider variety of clinical trials. Other NCI-designated centers not too far from you are the Chao Family Comprehensive Cancer Center at UC Irvine, the Jonsson Comprehensive Cancer Center at UCLA and the USC Norris Comprehensive Cancer Center.

If I recall correctly, OCF member DonB was treated at Sharp in San Diego. You could send him an email or a private message for more information about his experience.

I should have added above that especially with a rare diagnosis, you want to be treated where they eat, drink, sleep and dream cancer. Your local ENT (who doesn't even phone you!) won't cut it. At any of the facilities in my post and in fishmanpa's link, your case will be considered by a team consisting of medical personnel from all the specialities involved (surgery, chemo, radiation, etc.) who will recommend what action to take -- and not by just one guy who wants to do surgery. The head/neck departments at the NCCN members and NCI-designated centers do head and neck cancer 24/7 -- that's where you want to be.

Also, just to clarify, M.D. Anderson, Sloan-Kettering, Mayo and Hopkins are also NCI-designated centers, and MDA, S-K and Hopkins are part of the NCCN. (In my post above I was listing only the NCI-designated institutions in southern California since Elizabeth had said she was reluctant to travel.)

Nice job Leslie.

[quote=Leslie B]Johns Hopkins in Baltimore is #1 for ENT and #4 for cancer.[/quote]

I can attest personally for JH having been treated there. There is a Hope Lodge a couple of miles form the hospital. Marcia and I stayed there (no charge) throughout treatment. I can't speak highly enough about my team. They're amazing!

They have a patient/doctor communication interface called "MyChart" which enables you to communicate with your team 24/7. Even now, 4 months post Tx, an email gets answered within 12 hours max (my experience thus far). You can view test results, schedule appointments etc. with the click of your mouse.

"T"