Luigi,
My team at MD Anderson consists of surgeon and chairman of the head and neck department, Randall Weber, radiation onc., Adam Garden, and the one whom I particularly like, my oncologist, Ed Kim. Be prepared...the head and neck section at MDACC lacks enough space and can be crowded with long wait times. MDACC can feel like a cattle call, but, as Brian said, these people know what they are doing and they have seen thousands of cases.
Best of luck and if you need any help or suggestions regarding Houston, please feel free to contact me.

Take care,
Danny G.

Gino,

My question was directed at forum members, not the general population. I have been here 3.5 years and I can be "fairly sure" on the answer. It was kind of a rhetorical question because I felt that some people were guiding you to not getting radiation. I felt, and still do, that you need the 2nd opinion ASAP. That is all. One way or the other, it is of no matter to me. It would be nice to avoid radiation, but not if you need it. My concern is that the decision is based on proper medical guidance, not the decision itself.

Best of luck,
Glenn

Gino,

I would like to offer my biased analogy. Having the first bout of cancer was like sitting back playing Russian roulette with one bullet in the chamber and spinning it. You may have dodged the bullet but are now faced with a positive pathology report of living cancer cells in at least one lymph node. Now, add a bullet to the chamber, spin and fire. Still feeling lucky? ...add another bullet, etc. How full can you load the chamber and still dodge the bullet(s)?

I have shed a few tears over the past 2+ years over this dreaded disease, some for me and family but many more for the victims that are no longer with us and their families that they left behind.

I didn't bat an eye at radiation but was reluctant to go ahead with surgery. Even after 2+ years I find myself second-guessing my decision. Battle this beast as hard as you can...you may only have one chance.

Just my opinion. I am really glad to hear you are going to MDACC for a second opion. Best wishes.

Ed

Hi Gino,
There was one poster on here, along with her sister, that touched me and I think of her alot. Her name was Marcy and her sisters name was Michelle. Below I have copied and pasted some of her posts and some of her sisters posts. Marcy died last April, she was 32 years old, mother of a 4 year old girl. She had tongue cancer, with one lymphnode affected. She didn't have radiation. Please read hers and her sisters words to get a feeling for why some of us are pushing you to radiation.


Marcy
Contributing Member (25+ posts)
Member # 965

posted January 28, 2004 09:08 PMJanuary 28, 2004 05:08 PM
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Brian,
Your situation sounds alot like my sister Marcy's.
Her first surgery was January 03, resection of tongue and lymph nodes. One node positive and they told us they didn't recommend radiation. If only we could turn back time and have tried the radiation right away. In June she had a recurrance in her neck and submental area. Then they recommended radiation and chemo. After this she had a radical neck dissection. 2 months later the tumors recurred in the neck, face, and also skull mets and c1 mets. She was in such horrible pain. Her tumors are continuing to grow so fast it doesn't even seem possible. She also got the pneuomonia last week and had to be admitted for 2 weeks. She received the Gamma knife for her bone mets and now they are going to do IMRT for the tumors in the face and neck. Is this what your friend is receiving. They want to try and shrink the tumors so she has longer to live and less pain. She is on a morphine pump at my mom's and still in alot of pain. I don't know how much more of this she can take. Watching this pain in my beautiful little sister is heart wrenching, she is only 32 and has a beautiful 4 year old daughter. We continue to pray hoping God will change his mind and let her stay with us.

God Bless you,
Michelle

--------------------
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32

Marcy
Contributing Member (25+ posts)
Member # 965

posted July 25, 2005 10:24 PMJuly 25, 2005 06:24 PM
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Hi Dave,

I read your post and thought I would tell you what they did for my sister Marcy. She was diagnosed with I believe a stage 2 SCC of her lateral tongue, she was 31. They did a partial glossectomy and neck dissection. She was very scared about losing part of her tongue but she could speak very good after she healed. She did have 1 postitive lymph node. They chose to do nothing else for Marcy afer her surgery because she had only one positive lymph node. NOW I can't even begin to imagine why her doctors wouldn't have recommended aggressive treatment.
Marcy had a CT scan 3 1/2 months later that showed her cancer had spread extensively throughout her neck. THEN she had chemo and radiation and also a radical neck dissection.
Nothing could stop her cancer at this point. I suggest you treat the cancer as aggressive as possible. I believe Marcy should have received rad and chemo immediatly not wait those three months. Marcy felt something wasn't right from the beginning but her doctors didn't always listen....
Anyway, that is some of Marcy's story.
I wish you the very, very best as you make your decision.
Bless you,
Michelle

--------------------
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32

Hi folks,

Minniea, Marcy's case is certainly disturbing. Was her one positive lymph node enlarged, or was it a micro positive? Also, do you know if she was a non-smoker? I'm just curious.

Uptown, it's very likely I'm dealing with an empty chamber. That is to say, I might very well be cancer free. That's what makes the decision so difficult.

After thinking about this for the past few days, I'm leaning towards the radiation. In fact, I went to get my second simulation today, so I'm all set to go. I figure that if I don't do anything and have a recurrence, I'll never forgive myself. On the other hand, If I get the radiation and it comes back, at least I can tell myself that I did everything I could. Of course, what I REALLY want is to not have to deal with this ugly beast ever again!

Thanks for all your comments.

Gino

Hi Gino,
I do know that Marcy was a non-smoker, not sure about the node.
I realize that my tumor was a stage IV, but, it was well contained within my jaw bone and my node situation was the same as yours.............micromets. I had the lymphnodes removed and had radiation. I had clean margins from the surgery and, quite possibly, was cancer free after the neck disection. But, it was in the nodes and to me and my doctors that meant radiation. They couldn't promise me that the cancer was all gone in my neck, but they COULD promise me that my chances of it not coming back were better WITH the radiation. I did not have chemo.
I'm happy you're leaning to radiation, especially if you are able to get IMRT. Most of the IMRT patients on this board are doing very well. I didn't have IMRT and, while I'm not having issues with my teeth, I was up until a month or so ago eating steak, chicken, pork, mexican food, you name it, I was eating it. Is it different? Yes. But you get to the point where you REALLY have to THINK about WHY it's different, as your body adjusts to your "new normal". I had conventional radiation and I taste just fine and still have saliva.
We're thinking of you!
Minnie

Gino, that logic of "if I don't have the treatment and get a recurrence I'll never forgive myself" is pretty much what made up my mind too (although getting a second opinion where they strongly recommended it anyway also helped).

Nelie

Let's not forget Heather, she was 28, didn't smoke or drink and had an early staged cancer as I recall. Considering that they can't even a detect a tumor as small as 2mm with any conventional scanning technology this micro stuff is almost absurd. You are aware that tumors send thousands of cancer cells into the blood every day, right?

If you die you won't have to worry about forgiving yourself.

I'm not understanding that last remark. Gino didn't reply on a scan, his mets were determined to be micro mets from the pathology done on a neck dissection. Gary, are you saying that should be enough for radiation because detecting possible recurrences at an early stage is unlikely because of scanning limitations?

Nelie

Hi!

Gary, within the context of my last post, your last comment (i.e., "if you die you won't have to worry about forgiving yourself") is alarmingly deterministic, as it assumes that a recurrence automatically means death. I know you probably didn't mean this, but your comment can be easily interpreted this way. If I don't get radiation and do have a recurrence, I hope I have plenty of time to be pissed at myself. I know I'd still have plenty of fight left in me (even as I kick myself in the ass).

Nelie,I understand that your case is similar to mine in that your doctors found micro traces of cancer. However, as I understand it, there are at least two factors that distinguish my case from yours. First, yours was a stage four tumor (mine was barely a stage one). As Gary said, tumors send thousands (perhaps millions) of cells into the blood each day. Obviously, the bigger the tumor, the riskier the situation becomes (no matter how "contained" the tumor might have been). I know people here have insisted that the staging changes (it becomes higher) when they find cancer in the nodes. However, according to every doctor I've spoken to, cases of micro malignant cells like mine defy conventional staging standards. Namely, they simply have no idea what to make of it. Second, you mentioned they had found micromets in your "nodes" (meaning more than one node). As far as my doctors could tell, a microscopic speck of malignant cells (which they found after using a number of different dyes) was found in only one of my nodes.

I'll be flying to Houston early tomorrow morning and seeing the folks at MD Anderson. I have an appointment at 2:30. They will review all my records and give me a second opinion. I will make my final decision after they have made their recommendation. Luckiy, I have already completed the simulation process and I'm ready to start radiation treatment if they tell me it is warranted.

Thanks again for your comments and support.

Gino