RLM,

Sometimes a patient has to tolerate being treated by a jerk because that physician is the best one available. So much depends, in my opinion, on the rapport you have with your physician. I too was a T1 and have never doubted my choice in physician from the second I met him and he had me laughing within minutes while I was scared to death. His confidence in his abilities translated into my confidence in my ability to survive this. I am very much a "gut" feeling person, and say go for it. Just drove 20 hours there and back to get an all clear on my 3 year check, and will return 4 months from now because I want to finish this dance with the one that brought me!

Sincerely,
Lisa

RLM,
I had an appointment scheduled for a second opinion at Methodist Hospital, one of our major private hospitals. My cousin, who was a radiologist at the other major private hospital, referred me to an oncologist there, telling me, " you won't like it at M.D. Anderson, it is just too big and impersonal." Well, after meeting my team at M.D. Anderson, including a very arrogant Chilean/German surgeon, who happened to be the long-time chairman of the Head and Neck Department, a radiation onc. with no personality, and a very personable oncoligist, I decided to stay at M.D. Anderson. I never went for the second opinion.
Although my cousin was correct about the size of the place and at times I had to become a squeaky wheel to get some attention or some help, (I still give em' hell occasionally) here I am, almost 4 years later, alive and well. My original ENT doc who did the biopsy, said "you have an aggressive tumor and MDACC treats cancer aggressively." I think that I made the right decision.

Best of luck with your treatment and recovery.

Danny G.

RLM, I also felt good about my ENT/surgeon from the first appointment I had with him. I still have a lot of trust and faith in him and I'm very glad that there is a doctor as good as he is practicing in my town and basically being the person in charge of followup to my cancer treatment.

But twice since I became his patient I have also gone to get a more expert second opinion and both times that opinion was incredibly helpful. The first time was at his urging, actually, after my partial glossectomy, because the radiation oncologist at the radiation medicine center at the hospital at that time was saying I didn't need radiation and my ENT thought I did. I took all my records and sent all my pathology slides to Dana Fraber and got a very thorough exame by an ENT there and then a very thorough consult with and MO and RO from their head and neck team. The RO made it very clear that I did need radiation, and why, and the MO strongly suggested I have chemo as well--even though that was a very agressive recommendation he was confident it could reduce my chances of a recurrence and after talking to him and reading some research articles he gave me I agreed.

I came back to my ENT here and was able, with some help from him, to get these recommendations implemented here.

I also have a top notch MO here who used to practice at Sloan so I'm very happy with both those local doctors (less so with the RO who ended up treating me but that's another story).

The second time I went for a second opinion was just recently when my swallowing problems were not getting better, even with recommended exercises, and I wanted to be really sure I was doing everyting I could to recover swallowing ability. The result of that second opinion (which someone on this board helped me arrange) caught undiagnosed strictures in my esophagus which had been totally missed when the hospital here had given me a modified barium swallow test (My ENT is not to blame here since he never saw the barium swallow directly, just based his recommendations on the report). I got a referral to a surgeon at Dana Farber (turns out she's the same one that examined me for the other seocnd opinion) who can do the surgery to fix this problem (hopefully).

There is clearly a difference between the knowledge and care you get from a CCC with a head and neck cancer team and being treated by individual doctors affiliated with a local hospital, regardless of how good those doctors are. This is simply because at the CCC they have seen more cases of oral cancer--that is ALL they see--and know more details about how to treat different issues, and ,as Amy mentioned, test for different issues. It's not an insult to a good ENT, such as yours, to say you want to get a seocnd opinion just to be sure. In fact, my ENT has been very supportive both times I wanted another opinion and very receptive to leanring about anything I found out that he hadn't told me about.

On the other hand, you have an early stage cancer and you're probably going to be OK not doing that if that's what you choose.

Nelie

I just wanted to add that although I have used expert resources for a second opinion for my oral cacner treatment and follow-up, I also was treated locally for stage I breast cancer lst year and I'm quite satisfied that I got good care locally without needing a second opinion. But that's in part because the breast cancer was Stage I and not an aggressive type, and also in part because breast cancer is more common so even in places that are not CCCs there are doctors who have treated lots and lots of cases.

Nelie

First of all--thanks to everyone who took the time to reply and tell me of their experiences. I appreciate it so much. I was encouraged by so many of you who relied on their first instincts and that those have served them well! I was also interested to learn about those of you who didn't have such a great experience and exactly why you felt that way. It helps me to understand what I need to think about and why I need to keep my mind open.

For those who wondered what my exact is, it is T1 squamous cell carcinoma of the tongue and floor of the mouth. I will have selective lymph node dissection at the time of my partial glossectomy. We will consider radiation (and chemo) based upon what they find from the ND. All of my tests, CT, chest X-Rays and PET scans came back clear, but I realize that doesn't always mean so much.

I found my surgeon by coming to the Eastern Regional Cancer Treatment Centers of America. Not in any way close to my hometown in West Virginia. I thought about going to Johns Hopkins or MD Anderson, both very well-known head and neck cancer treatment centers, but really wanted an approach that took in all of my body (spirit, mind, nutrition, naturopathic) as well as just my mouth. (I've been a vegetarian for 17 years, and never smoked, drank very very little so these things are important to me.) They seemed to fit the bill.

My second thoughts really all center around wondering whether I should have gone to these recognized giants in the field. The treatment I got at CTCA was excellent and the people there took care of me like I was a long-lost relative, and the otolaryngologist they hooked me up with was great, as I have said before. He has super credentials, and is a plastic surgeon, too. So I am confident that he will give me the surgical treatment that I need right now.

I don't think there is any question that I need surgery. The last oral surgeon I saw at home at home did the biopsy, but wasn't able to get clean margins. I had been treated by another group of oral surgeons on several occasions, who had done a biopsy, but even I could tell the last time that they had not treated the entire area. Their advice to me was not to worry about it, that it would never come back to bother me. (This same group of oral surgeons had seen me for lesions in the same area two years earlier with pretty much the same advice.) Anyway, were it not for the diligence and concern of my dentist who called the pathologist herself and talked things over with them, I would not have sought the advice of the last oral surgeon and found myself with the correct diagnosis. It was after a conversation with my dentist about the true nature of that patholgy result that I decided that I really didn't want to go back to the group of oral surgeons who kept pooh-poohing my problems. I insisted on seeing someone new and my dentist was open to referring me to someone else. So, finally, I was sent to the guy who diagnosed me with T1-SCC.

So, I now depend a lot on gut reactions. It is how I found my current OBGYN, my neurologist and my oncologist for my dogs. None of them live in my hometown, all of them are about a six and a half-hour drive. But they have all delivered excellent care, above and beyond what I expected, and I had an instant connection with each and every one of them. So I am hoping that this otolaryngologist and I continue to have the great fit that we had at the start.

I have read some things some of you have written about being treated at a large head and neck center versus being treated at a smaller cancer center. How much different do you think the care is? Do you think it is personalized, attentive care? I have reason to believe that my SCC might be of HPV origin, and so I did think more than twice about going someplace like Johns Hopkins where they are doing so much research on that subject. Has anyone in a similar position been to Johns Hopkins or been able to receive the vaccine that has been in development? I was disappointed to learn that while they have been rated No. 1 in some places at the top head and neck care center, their newsletters in the last year or so didn't mention anything new for folks who are suffering with this problem. A bit disheartening. In the end, it was that kind of thing that made me just decide to go with my first instinct.

Again, thank you for your warm welcome and all the information. It helps so much to know that there are others who have been there. The surgery is just a few days away and I am still a little shaky, but I feel some relief just by your great posts.

RLM

RLM- Best luck with your surgery. We'll be looking forwrd to hearing from you. Amy

RLM, There is a woman who often posts here, Gale, who's husband was treated at Johns Hopkins and who had an HPV-related and is now enrolled in a clinical trial for a vaccine against a recurrence of HPV. Hopefully she'll be along to post here soon.

As may not have been clear from my story above, there is actually a window where you can request a second opinion after your surgery about whatever you are told about the need for further treatment. You may want to keep that as an option even if you don't feel you need to get a second opinion at the start.

Nelie

I just want to weigh in on an obvious point - I have less problem with patients that have small early lesions being seen by a single ENT in a local facility than I do with those of us that have latter stage disease. I am a firm believer that those of us that had advance disease should be in a multidiciplinary CCC that has a team approach to things, and end up going through a tumor board before treatment begins getting perspectives from doctors of all different diciplines before deciding what is best for us. CCC's attract the best of the best, and they also have available to them clinical trial drugs that would not be available in a smaller or lesser center, and definately not in a private practice. While I want my doctor to look at me as a human being and not just the dust jacket on some disease, I will tolerate less personality and a coarser bed side manner in trade for having the best hands, eyes, and skill sets around any day. I want the doctor to cure me...not marry me.

Nelie, I apprecate your point about the option to request a second opinion. Already, my otolarygolgist and my RO are telling me different things about what I should do if we find simply one diseased node. So I'm certain I'll be in a real sweat if that comes to pass and I'll need someone to step in with a tie-breaker. My questions about larger, well-known head and neck centers was in part because I thought perhaps they might be helpful in that sense.

I also hope that I can find out more about the clinical trials with the HPV vaccine. It seems to make sense that someone in my shoes should be doing everything possible to take action to prevent future problems. My ob-gyn for the present suggested supplementation with folic acid, because as she put it, the HPV virus doesn't like folic acid very well at all.

Brian, I appreciate the point that you made above. I am certain that you are correct in your assessment that only the best should be sought for more advanced disease. I suppose my concern and above question comes from a lifetime of experience with neurologists who failed to meet my expectations and/or pain management with excruciating migraines. I spent many years in agony and seeking help without finding it. Talk about making the rounds with dismal outcome! Here, a little bedside manner AND genius go hand in hand. At least that is what I found. I can't help but hope for both in my future treatments because I found that only those doctors that had both really were able to see my pain and heal it. I've been lucky so far. Perhaps I will have to give up one for the other in the future, but I can't help but hope I won't have to. Especially in this most serious of battles.

RLM