I appreciate the concern but I assure you, we didn't make the decision about MDA without thought. No one has to sell me on MDA; I have a friend who's been in treatment at MDA for several years and I understand that MDA is the gold standard for cancer care. We discussed it with his surgeon, who we trust completely, and we discussed it between the two of us, and we made an informed choice. All things WERE considered in the decision, including the nature and extent of his treatment plan, there's no "homework" I didn't do and it was absolutely NOT a question of "mere convenience."

Again, I appreciate the concern but I'm not looking for people to second-guess and criticize the choices my husband, his medical team, and I are making together.

Heather, you need to understand the nature of these boards and the history of patients or caregivers who come here and post.

What we see is a lot of them blindly accept the diagnosis and treatment plan given to them by one physician who may or may not have the experience to treat oral cancer. All of us here advocate at least getting a second opinion at a NCI designated Comprehensive Cancer Center for many reasons but mainly because they see 100's of patients a year and use a multidisciplinary approach to recommend a treatment plan.

I am sorry that you felt attacked for your decision but we know that this disease is unforgiving and the best guns need to be there the first time. When we don't see that you have at least consulted with a CCC, we all kind of jump in and recommend that you do in case it is something that is simply not on the radar.

If you have done your homework and you are comfortable in your decision, we all respect that. Please understand that we have no way of knowing the process that got you to your decision and only want the best outcome for your husband.

After you are on the boards here for a while, you will see what I am talking about.

Wishing you the best,

Deb

[quote]When we don't see that you have at least consulted with a CCC, we all kind of jump in and recommend that you do in case it is something that is simply not on the radar.[/quote]

That's understandable and, like I said, I know that it comes from a place of concern. But it's seriously alienating as someone new to this board and this experience to have our decisions questioned in a tone that implies we're taking shortcuts with my husband's care because we can't be bothered to drive to MDA.

I'm probably overreacting to this, but in less than a month my husband was diagnosed with cancer and had 1/4 of his tongue removed. My head hasn't stopped spinning yet and all of my emotions are pretty close to the surface. I appreciate the wealth of information on this board but I would suggest that folks consider their tone a bit more carefully.

Hi Heather! Sorry to hear about your husband's diagnosis, it sounds pretty similar to mine. Your husband had his hemiglossectomy on the same exact date I did 1 year ago! And sorry you are feeling attacked on the board! I just wanted to give you some support I had my surgeory at MD Anderson; however, after meeting with both the radiation oncologist and medical oncologist at both MD ANderson and my local(ish) cancer center, we made the decision to do the radiation and chemo locally in Louisiana, and so far so good!

I know how overwhelming everything can be... I went from being completely independent, care-free to being diagnosed with cancer, having to move back home with my parents (I was living in Atlanta), losing over half my tongue (when I was told I would only be losing about 1/4th), and just basically a spiral of bad news in about a month's time. And on top of that, you have to make serious decisions that can literally be the decision between life and death!

After much thought and consideration, though, we decided it would be best to be back home during the treatment. I think the decision was best for my family, I don't know if I could have handled any other changes. I will say though that one thing that helped us make the decision is that my team at MD Anderson discussed my treatment plan with my team at my local hospital, so everyone made a colllective decision on my treatment plan. Also, I had a lot of trust in my doctors and the machine used was the same at both hospitals.

A second opinion is always nice to have, just so you can feel more confident about the decision you ultimately choose. My biggest concern through all of it is that I didn't want to have any regrets... in case I ever have a recurrence, I don't want to be able to look back and say "if only I had...". And despite my decision to do treatment in Louisiana, I feel like I had the best treatment possible.

Good luck, he will get through this!

Hi heather I absolutely did not intend for you to feel attacked - and trust in a dr is very important. It is after all your decision. As others have stated we just want to educate - having been here a while you learn a few things - 1) not all hospitals are created equal (and many newcomers don't know that and make decisions based on convenience thinking one hospital is the same as another - ask Kelly about his recent ordeal with an experienced ent - who told him his cancer was back - he was terminal, and to look for a hospice (he actually had a brutal canker - that was necrotic) - for this reason we always suggest looking into the best possible care. and 2) some people simply don't ask - just accept what is given in terms of advice this can be a deadly mistake.

Unfortunately we've lost far too many members here - some in their early 20s to this disease - we always hope and pray for the best outcome and treatment for all. The worst thing is to sit there and regret your decision afterwards - and wonder - what if...
Hugs seriously I didn't mean to offend you - Hope all goes well. Treatment will be rough -but you will get through it. And try to take some time for yourself.

Hi Heather,

I had 50%+ of my tongue removed, stage 4 and a neck dissection to remove lymph nodes.

No doubt about it, cancer sucks, and you have every right to be pissed off for your husband and your family. This is a place you can vent that anger, because everyone here has felt it. I Know I did.

There is good news. I am 4 weeks past surgery and my only speech issue is a slight Elmer Fudd sound (think "you wascally wabbit"), and that is because the new tongue (which I prefer to the phrase "flap") is still swollen and gets in the way.

I am eating solid food, back at work, and recuperating, but feeling pretty damn good. I still have rad/chemo starting in a few weeks, but I will cross that bridge when I get there.

Know this is beatable. Not a chance I am letting it beat me, and I'm sure your husband feels the same way, especially when he looks at you and your little one.

I'm here to support and encourage. Good luck to you, and let me know if I can help in any way (even if it is just to vent - I have thrown a pity party in my own honor a time or two).

Tina

Heather, the first time my husband had cancer he was just 32 years old. Non-smoker, non-HPV. He had 1/4 his tongue removed and 65 lymph nodes, 1 positive. We had a 7 year old and a 10 year old at the time and I just want you to know ....I get ya. Your range of emotions, fear, anger and worry are mirror images of my own. You are in for a ride as a family. I have been around these boards for 7 years now and can honestly tell you that the intentions on here are never to offend, everyone on here are fighting for your husbands life right along with you.
Our only intentions are to be here for you and your husband, this is a place for you to reach out and ask questions. We all have tips and tricks that help make the battle a little easier.
Please know that everyone's concern about your medical care only comes from a pure heart, in that they want only the best outcome for you and your family.
My husband has had this stupid disease 3 times in the last 6 years and so if your needing A shoulder I'm here.

I agree, there are to many stories on this site of patients not being treated at the best facility's possible and way to many suffer becouse of it.

Heather,

You are posting on a board full of people who are experienced on the path that you and your family have found yourselves on. Many here have been through this ordeal several times and or have been on these forums for many years and have literally helped thousands through this crazy and often deadly ride. There are even people here that speak nationally about this disease to our medical community, and of course we've all lost friends and or family to this disease that we've tried to help.

It should be very evident as to how critical the advice is to get a second at MDA just based on how many posters have suggested it, of which you can add myself to that count. What I would tell you is instead of getting angry and feeling judged, you should take a moment, understand that our only concern is for your husband and your family and that we are speaking from a place of wisdom earned through heart breaking experience.

Second opinions are just prudence, and second opinions from arguably the best Otolaryngology dept is a no brainer. Unlike you, we've already lived this and have seen friends and family die to the diagnosis you just described, in fact I held the hand of my friend, from Texas no less, this summer as his third recurrence of aggressive tongue cancer was taking his life after it took his entire tongue, and larynx after many surgeries and two rounds of chemo & radiation.

So what I would say in the nicest way possible, full of love and compassion, is to pull your spinning head from your behind, and get the second opinion as it truly is a matter of life and a horrible, tortuous death. I don't really give a damn if I offend you either, hopefully I make you mad enough to get the second just to shut me up. My only concern, as a man who was diagnosed in his early 30's, married with two young children, is that your husband lives for you and your young family.

Peace and love,

Eric

[quote]I don't really give a damn if I offend you either, hopefully I make you mad enough to get the second just to shut me up.[/quote]

Well, you've made me mad enough to stay the hell away from this board from now on.