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#20351 05-05-2006 05:19 AM
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Hi to all!

What a nice place this is to visit and get information. I must confess to coming back day after day since my diagnosis--T1 SCC of the tongue--and doing my best to learn from those of you who have walked in my shoes and beyond. I am so proud to live in a world where people dealing with this stuff are still just . . . getting on with it. Living, I mean. Being funny, being well-spoken, being a bit out of sorts sometimes, but being so HUMAN!

I confess to being alternately frightened, emboldened and unexpectedly offering solace to everyone who seems to want to give comfort to me. Only reading and learning and breathing slowly in and out stops the worry.

I am scheduled for surgery next Wednesday with a great doc. (otolaryngologist) and I suppose the main worry I have now is that I didn't go for a second or third opinion, and I wonder if perhaps I did the right thing now. I met this guy, we really clicked, he spent a lot of time with me, gave me much better surgical options than my oral surgeons in my home town, and was very thorough and explained away all my questions (of course, those were just the ones I had at the time!) and said he did quite a few of these types of surgeries. All in all he seemed quite top notch. Both my husband and I were totally wowed by this fellow and it seemed that getting other opinions would just muddy the water and make the marching orders more difficult to follow in the end.

But now that I am back home, it is hard to explain the way I felt when I talked with this man and the confidence I had in his abilities. Everyone is shocked that I will be letting him take parts of my tongue and I haven't even let anyone else in his field take a crack at giving me their opinion. But that is just it: how much energy should one expend running around getting second opinions and how much time should one waste? I've been slipping through the cracks of a practice of oral surgeons since 2001, and now I feel that time is of the essence.

Has anyone else been in this position? I am just wondering if I need to reconsider and drag myself around to some other large cities, miles away from my home for some second and third opinions. I really liked this guy and his "vibe." I know it is kind of a new-agey thing to say, but he really did have a good one!

Thanks for the advice. Good thoughts to all.

RLM

#20352 05-05-2006 07:26 AM
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For what it's worth, my opinion is - trust in your Dr. is everything. This whole cancer thing is a crap shoot as far as I'm concerned and YOU have to feel good/resovled about your decisions. I told my Dr. that making a decision about my treatment is like buying real estate in a foreign country from a broker speaking a different language I don't understand - did I just buy swampland?? Also sounds like you may be the kind of person who usually is the one taking care of others and now people are showing their concern for you - that can be hard too - again, make decisions that you think are best for you = not what you think others want....terry

#20353 05-05-2006 07:33 AM
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RLM,
Welcome to this forum. As you have already discovered, it is a great place to get info and support.

Thought I'd throw this out there for you. My husband and I decided to go with an ENT surgeon in a somewhat rural area. But we sent his files off to a doctor that is a leader in the field at a CCC and had a phone conversation with him regarding the treatment plan. He was able to let us know that he agreed with the treatment plan (though he did suggest adding concurrent chemo, which the smaller center wasn't doing at the time) - he also knew of the ENT surgeon and calmed our fears by calling him "world-class."

Certainly this route is not as good as actually going in person for a second opinion, but it could be something to consider if you are feeling like you would like to have some confirmation that your chosen path is the best.

Wishing you all the best ,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#20354 05-05-2006 08:57 AM
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RLM,

I was diagnosed with SCC (stage 2) on my tongue 3 months ago. I went through a similar process as you. My doctor, part of the ENT team at the Huntsman Cancer Hospital, came highly recommended by the oral surgeon who diagnosed my cancer. The oral surgeon managed to get me an appointment with my surgeon the day after the biopsy came back. It was so reassuring not to have to wait.

Anyway, I felt completely comfortable with my surgeon from the get go. Everyone I talked to from the oral surgeon to the office staff and nurses said that he was "the best". I had a PET/CT scan to check for any spread. After that he laid out his plan for my treatment and I was scheduled for surgery. He explained exactly what was going to happen and why. I had a partial glossectomy and a neck dissection. My margins came back clean as did the lymph nodes.

My surgery couldn't have gone better. It was long--7 or 8 hours, but I had no complications. As he was trained in plastic surgery as well, I had minimal scarring and some great reconstructive work on my tongue. I've said before on the site, you can't tell I had a 3 cm piece of my tongue removed from just seeing or talking to me. I can't get over how well things went and how happy I am with the results.

It sounds to me like you've done your research and are making an informed decision. If you feel good about your doctor then I'd go with that. I did and I'm glad of it.

--Aimee


Stage 2 SCC of tongue, surgery only 2/13/06. Margins & nodes were clear. No rad or chemo deemed necessary. Recurrence found 4/07. Surgery 5/22/07 with Cisplatin x 3 and 33 IMRT. Died 12/28/07.
#20355 05-05-2006 01:15 PM
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Hi Rlm,

Welcome to the forum and good luck on Wednesday. You will find many survivors here that did get other opinions before beginning their treatment and they did this for many reasons. You didn't mention anything about your staging, lymph nodes, radiation or chemo. Are you having a glossectomy only?

I too, did not go for a second opinion. I was referred to my surgeon by several of my colleagues and friends. Like Aimee, I had a partial glossectomy and neck dissection. I have not looked back about getting another opinion, as I had complete confidence in my surgeon. It would be great if you could get past this as second guessing yourself after the fact, can be self-destructive.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#20356 05-05-2006 02:16 PM
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RLM, no second opinion here either. I was referred to the ENT surgeon by the ENT who diagnosed me. I liked the surgeon a lot, checked his credentials, which were superb. He answered all my questions in detail. Explained exactly what he was going to do, drawing pictures to make sure I understood, sent me to be examined by and meet the assisting plastic surgeon, and I never looked back. Post-surgery, before I could even ask for it, he arranged the radiation and chemo. That was four years ago and I am still impressed by him.

If you are comfortable with your choice and he has experience, I agree with Jerry that second guessing is unnecessary. I think you can safely trust your initial impression, given your description of the doc.

#20357 05-05-2006 02:32 PM
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Dear RLM, I going to take the opposite side because I am regretting that we DID NOT get an opinion from one of the big Head and Neck Cancer Treatment Centers. John' ENT sent him to a well respected Otolaryngologist {surgeon} in our state when his cancer was diagnosed a year ago. There were no options offered to him but surgery and radiation. That was projected to get it all. His cancer has recurred and he has since had another major surgery and chemo starts next week. After the 1st major surgery, he was not counseled or directed to speech or swallowing therapy or any ancillary help in dealing with the after effects of surgery and radiation. We have pretty much "been on our own" It has been really tough going. I feel that if we had been under the umbrella of a big Head and Neck Cancer treatment Center, John would have suffered less through all of this- the outcome might still be the same-but his life to date might have been better. His tumor was in the floor of his mouth and staged as a T2 but no nodes were involved the 1st time. I don't mean this to scare you. I'm just giving you my "hindsight" opinion. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#20358 05-05-2006 02:36 PM
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RLM - Let me start by saying i am a huge believer in second opinions. However, after reading your post, how you feel about your doctor and seeing you are stage 1 a am very much in support of your current decision. I recently had a recurrence and ran around getting second and third opinions only to wind up following the recommendation of my primary surgeon and after a roller coaster ride of confusion. Don't look back, don't second guess your decision and good luck and let us know how it goes. I've had 2 partial glossectomys and both went very well iterms of my fully recovering 100% speech and functionality.

#20359 05-05-2006 02:38 PM
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correction - the previous message was actually sent by Warren F. didn't realize i was signed in under my wife's name

#20360 05-05-2006 03:40 PM
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Hi RLM,
My husband and I also were wowed by the first doctor we saw and we never considered getting a second opinion. Three years out, still cancer free, and still seeing that same fantastic doc that I "clicked" with from day one.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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