Wendy, boy am I glad you have joined our group!!!! I would definitely advise you to go for second opinion. Only this one doctor's eye and knowledge puts a limit on how you will be treated. From what you replied with I know you are NOT being treated at a CCC or your case would have first gone in front of a tumor board with all the experts weighing in on your treatment plan. Thats the reason for the rush. Ive seen this with other patients where they're rushed right into surgery before they have time to even process whats going on, they get told they dont need a second opinion. Do you have another appointment with this doctor coming up? A treatment plan should not be determined until all the tests are completed and reviewed. I have one simple question that will tell you everything you need to know about this doctor. Ask him if you should get a second opinion and if he thinks you should go to a CCC. If he says its not necessary then you know he is NOT looking out for your best interests. You can also ask if the doctor is affiliated with a CCC. Any reputable doctor will have no problem with their patient seeking a second opinion, they will encourage it to make sure their patient gets the very best medical care. I hope you were given copies of the biopsy results and any other office notes on file, they can be given to another doctor to review. Just remember.... surgeons cut and will always advise a patient to have surgery. Once its been removed, it can never be fully restored to exactly its original function and it can never be put back. Another thing... a neck dissection is NOT a replacement for radiation treatments. You may only have on shot at getting the cancer eliminated so you want to make certain you have the very best medical team you can get in your corner.

PLEASE review the links Ive sent you to help you find a second opinion location. Make those phone calls and get the ball rolling for an appointment. You will want to find an ENT who specializes in treating oral cancer patients and not the type of ENT who mainly puts tubes in kids ears. In those links I posted theres info describing the flow of things from when a patient is first diagnosed thru treatment and recovery. Theres even info about financial assistance to help cover costs if you would choose to travel to get treated.

When people first learn of your illness they will give you all sorts of advice they learned from their "Great Aunt Sally" who had xyz cancer in 1975 and got thru it just fine because they would rub cinnamon sticks on their feet. Yes, that was meant to be funny But seriously, the false cures will come out like crazy or you should do this or that all because they "heard" some third hand tidbit and it will help you. Friends and relatives will behave differently, some become your new BFF while others who had always been very close to you will run for the hills. Some people simply can not mentally handle someone they know and love being sick. Im telling you this so you are careful to just say "ok, thank you for the info" and not follow it and also take anything from "Dr Google" with a grain of salt. This kind of thing can be harmful or interfere with your treatments.

If you would like to talk about anything Ive posted, please feel free to give me a call. I talk to OC patients from all over the world on a regular basis. Over the years Ive been here Ive picked up quite alot of info and tips. I'll PM you my info so watch for the tiny flashing envelope next to your My Stuff tab.

Hi Wendy, You got this girl! I just went through all of this and just joined this group. I is a long road ahead but with positive attitude, wonderful support and confidence you can do it. I have a VERY similar story. I am 30 years old, non-smoker, minor social drinker, very healthy, no virus and I had partial glossectomy for stage IV tongue cancer. The process moves so fast but that is a good thing because you don't want it to spread and you don't want to have to stress and worry! I found out I had cancer March 10th and went through all the same test you are and had surgery March 20th. I saw you discussing a PEG tube. I had a NG tube the day after surgery and only for 9 days before passing my swallow study. This was a major shock to me and now 5 weeks post op I can even chew soft foods! I am 9% back to talking like my old self again. Everyone is different in recovery and this is your journey. I am so glad you have a supportive family and husband. I realized when you have cancer your whole family has cancer! Take one day at a time : )

Wendy,

Welcome to OCF and very sorry you had to be here.

I was diagnosed with oral cancer (SCC of my lateral tongue, stage 1) in 2005. I also did not have any risk factors and never even heard of oral cancer before. I went to the best ENT in our area, had CT scan and all the other tests, and had my first surgery (hemiglossectomy) within a few weeks of first learning I had oral cancer. After this surgery I was given the all clear - told they got all the cancer. What a relief!

A few months later, after I had time to do more research, I decided to go for a 2nd opinion and ended up at a larger hospital in a larger city. During this process, all my records were reviewed by the this other hospital and I learned that the pathologist at the small, local hospital "misread" one of my biopsy slides and in fact there was "cancer at the margins" in the one area.

I then ended up going to a another hospital (larger and only did cancer) for a 3rd opinion. My options included more surgery (tongue and/or lymph nodes), radiation or "watchful waiting" and combinations of these. I was sent for more tests (PET/CT scans, etc) and there wasn't any signs that the cancer remained. Over the next few months I visited multiple doctors to determine what should be done. Even the doctors that initially recommended more surgery, were now in the "watchful waiting" camp or radiation camp. I opted for radiation because I felt I had to do something.

Then in 2010 I found out that the cancer had returned to the same location and again went for multiple opinions. This time I ended up at Johns Hopkins (Baltimore, MD) - one of the best head and neck cancer hospitals in the USA if not the world. One hospilat wanted to do major surgery, but the doctor I saw at Hopkins did not agree. He recommended surgery initially, but at Hopkins and most larger hospitals that treat a lot of H&N cancer patients they do "frozen sections" during surgery - this is a term for a biopsy done during surgery to make sure that clean/wide margins are obtained. This was not done at the first two hospitals (small, local hospital) where I had surgery. The surgeon would continue to remove tissue in the area until clean margins were obtained. So when I went into this surgery I had no idea how much of my tongue would be removed. Fortunately it was minimal. One of the hospitals this time wanted to remove half my tongue, plus lymph nodes on both sides of my neck (a repeat PET scan did not indicate that the cancer had spread). Since I already had RT in 2006, this was not an option.

If I was able to have a "do-over", I wish I had gone to Hopkins at the beginning. Who treats you and where you are treated are extremely important. In spite of doing research and asking lots of questions back in 2005, I did not know any of this and I did not find out about the OCF website and forum until a year after I was initially diagnosed.

One of the things I love about the OCF forum, is that all the posts made over the years are saved and searchable. I would often do searches of prior posts to look for other patients that had a similar diagnosis as me. You can obtain a list of posts made by any OCF member by clicking on their username, or search posts in the various forums. You can read about my "OC adventures" from 2010 by searching posts that I made.

Wendy, I would recommend a 2nd opinion at a major cancer center (use the list Christine gave you to find one near you). Ask lots of questions and make sure they do frozen sections during your surgery. Oral cancer generally spreads first to the lymph nodes in your neck, so many doctors recommend a neck dissection to check the lymph nodes for cancer. A PET or CT scan is a good tool to see if the cancer has spread, but from my understanding you need a certain volume of cancer cells to be present before they will show on a scan. Wishing you the best!

Just wanted to add that both UCSF and the Mayo Clinic will do second opionions electronically - if you send them the files and course of treatment suggested by your team they will review with their tumor conference. Cost at UCSF is 800.00 and is not covered by insurance.

Review can take two weeks or longer so not for immediate decisions.

WHOA!!! To me (and many OC patients), $800 is a ton of money.

Thanks for the info Stef!!! This is great info to help many who are far from these places. Its a great option for patients who are in remote areas too. Two weeks actually is not bad at all for turn around time. It can take 4-6 weeks to get an appointment to be seen.

Wow, MrsZiggy. Ive been non stop telling my family how wonderful this group is. You all have given me so much support , both information and emotional. As each day passes, Im feeling more confident in my ability to overcome this. Im so happy for your progress. I know it has not been easy for you.

Susan2992,ChristineB, Stef H.....im currently trying to get a second opinion. I made copies of my ct scans from this morning and hope to have the Cancer Center OncoLogist take a look at my reports tomorrow. I am in a smaller city and unfortunately, do not have the resources to go far from home, as I am the caregiver for my parents as well. Thanks so much

So glad you're finding support here--we've been there so definitely lean on the group and feel free to contact me directly for support and my perspective.
You're in my thoughts, Wendy.
Esther

By the way, Wendy, I totally agree that you should get a second and even a third opinion. I went for 3 consultations and am so glad I did as each differed markedly in how they would perform reconstruction surgery. I ended up going with the third opinion and it was a very good decision.
Esther

Hi Wendy,

I'm so sorry to hear about your diagnosis. I can't even begin to understand what it must feel like. I'm very glad to you have good support around you.
I could be in the same boat as of tomorrow, I get the biopsy result from my tongue tomorrow after work, and I this week, this waiting period, has been the hardest and slowest week of my life. All the best with the surgery and best of luck with the result from. Please keep us updated.