Heather,
The venue of your husband's cancer treatment is of course a decision that he makes, but given the T3 stage and the fact that it is aggressive I am surprised that they did not throw in chemo as well. It makes it a somewhat harsher treatment to be sure, but it statistically is supposed to give better results. You might consider asking about this, assuming you have not already discussed it.
Best,
Anne

So let me get this all down here Heather and see if this makes sense.

Your husband has "aggressive" late stage lateral tongue cancer (a diagnosis we've seen many of our friends and loved ones die horrible deaths from on these boards) and you won't take him to get a second opinion from the best medical facility in the "country" AND you won't take the "expert" advice and support of these boards because something I've written has offended you...

Cancer shakes the very foundation of life, so if this is the case, and you are too emotional to make rational decisions for your husband and family I suggest you get someone else to make health care decisions for your husband so he's got the very best chance at living, which is the only thing that myself or anyone else on these forums care about.

I'll leave further advice for other posters here as I'm obviously not the best person to try to communicate with you. Best of luck for what it's worth.

Eric

Eric, you need to back off. This is not your decision to make, and you have no idea of their circumstances.

Tina, it's why I repeated the circumstances she described back to her as I understood them in case I missed anything.

sh*t's getting real on this board! I think we've lost her...

[quote=HeatherC]It was moderately differentiated. His surgeon offered us an MDA referral but we decided that it would be easier to treat it here, especially if he needed radiation. So, here we are. [/quote]

This is what we all responded to regarding the treatment plan. As I said in my post, we have/had no way of knowing if it was an informed decision. I think even though Heather responded that she had investigated other things, we still have no way to know...therefore our concern.

I do remember, early in my days here, my reaction when someone on these boards questioned our decision to go with Cisplatin even though my hubby had a hearing problem. I felt second guessed and reacted strongly. I know now that it was because veteran posters had seen way more than I had and wanted to help. I hope that you come back Heather and continue to glean information and support here that will be invaluable in your husband's recovery.

Deb

Deleted.

Here's another thought Heather, that you can't make an "informed" decision when you don't have the experience to make it. Or have you and your husband been through oral cancer before?

Have you traveled the country speaking on this disease to major universities(as Brian and I have done, more him than I), in front of the CDC (as Davidcpa has), been involved with the major marketing campaigns such as Truth.org, and the CDC's anti smoking campaigns (like ChristineB's) after surviving the experience yourself and then turning around and helping literally thousands of others through their own experience with cancer? I'm going venture that you haven't.

The best advice anyone can give you, is to get the absolute "BEST" medical advice available to you, which is MDA. After that, the only thing you and your husband can control is your attitude and your nutrition, everything else is up to the expertise of your medical professionals and how your husbands body and his cancer reacts to treatment.

There have been so many examples on these forums of aggressive tongue cancers that have ended in horrible deaths, but two recent examples would be Liza and Nate, both close to me. Liza has a beautiful family, husband and their three children, all in their teens or early twenties. Nate had a fianc� (who left him after his recurrence), his mom Pam, brother Nick and his nephew Lyfe.

Both of these beautiful souls died this year Heather after their cancer recurred several times, as is generally the way with aggressive tongue cancers. Nate underwent two rounds of radiation and chemo to the head and neck, had his tongue resected 2x before they eventually removed it entirely along with his larynx. This left him unable to talk or eat. Liza passed early this year, Nate passed this summer.

I was very close to both of these people, Nate and I were extremely close and I had the opportunity to spend time with him and his family in Houston on a few occasions, staying at their home. I was there for a week just a few days before his death this summer. Nate was on a lot of drugs near the end and tired, spending the majority of the time asleep, so I mostly spent time with Pam and Nick, who are like my family really.

One of Pam's thoughts that she shared with me, and I know haunts her, is if her son would be alive today if he'd been treated at MDA from the beginning. Nate had chose LBJ due to his surgeon for the first go around, the second time he couldn't get into MDA due to lack of insurance, and by the time he finally got into MDA, his only chance was to have his tongue and larynx completely removed followed by another round of rads and chemo in the hopes that this time it worked.

I haven't contributed much on these boards, nor taken on any newly diagnosed patients since Nate passed, I think it's obvious the wound's are still too fresh for me to be of much help in this aspect. I'll admit to that and apologize for it.

What I don't want, is for you to have anything in the back of your mind that would cause you to blame yourself if things do not go well for your husband. Hit this thing doing everything in your power to beat it and if your husband doesn't make it you knew there was absolutely nothing more you both could've done.

It's going to get a whole lot worse before it gets better Heather, treatment is horrible and you shouldn't try to do it without support and family, nor your medical team will know what you both need like those on these forums. Gather other caregivers around you, and I encourage your husband to find survivors to surround him...and then give it hell.

Good luck Heather, whatever decision you choose.

Eric

My husband also declined a second opinion because he trusted his doctor. After I met him, I agreed. Our doctor friends agreed - they said that what you need is to trust your lead doctor. Funny enough, one of the women we ride with has a father that is a top ENT. Our ENT was a resident under her dad .... and after she asked him about it, he said we were in great hands.

In the case of a complicated diagnosis, a second opinion would be in order, IMO. And the doctor might well insist on it. I think that people on this site forget that if there is a tumor board involved, additional opinions and knowledge are brought into the program.

From my point of view, doctor related red flags include: not offering a second opinion, lack of interest in the patient, lack of experience with oral cancer, intellectual dullness, and too much ego (note that surgeons have to have some or they could not do what they do). The doctor needs to be very aware of the state of the art in oral cancer treatment, and he or she has to want to apply it as well as humanly possible to you or your loved one, and have the skillset, support staff and tools to do so.

Maria

Heather I hope you will decide to stick around here on the forum. I know things can be difficult in the future for you and your husband and you could need all the help you can get. Ive been here for over 5 years and have helped thousands of members. With my experiences, I know I will be able to help to you.

I know decisions arent easy to make and I do not think you need to hear my 2 cents. All I will say is that people really do become like family around here and please give the forum a chance. In time I think you will be glad you are here. Speaking only for myself, I know Im always happy to welcome a new member and to help them as much as I can.

Wishing you all the best!