My daughter (age 41) has SCCA under back part of tongue. In original surgery the USC surgeon only did biopsy (as he really didn't think it was cancer). Now he will go back in to do margins & neck dissection to remove nodes. He will also remove a nerve that is causing her pain. MRI didn

I had 2 nodes in my left side that showed up on a Pet scan. A needle biopsy showed SCC. they later found the primary at the base of tongue. My FIRST cancer doc told me I had to have a Radical Neck followed by chemo and rad and he gave me a 60% survival rate. My SECOND cancer doc told me that he would remove the 2 nodes only and then do chemo and rad and he gave me a 70% chance. My THIRD cancer doc (Moffitt Cancer Institute)told me that I would undergo concurrent chem and IMRT rad and they WOULDN'T remove the nodes because the treatments would get rid of the cancer period and they gave me a 80-90% chance. Who do you think I put my trust in? I am not saying you should not do the surgery but I am saying that you need multiple opinions. Good luck and keep asking this group all the questions you can think of. I am 5 only weeks out of treatment so there are many others out here that can help you.

Bonnie, I have a partially numb tongue and I eat what I want and taste everything. This is not as potentially a big a deal as you might imagine. I did not have a tongue tumor, but extensive surgery was done inside my mouth. I look just fine and talk a mile a minute. I had the radiation and chemo also, and have completely resumed my life as it was before. Any treatment post-neck dissection can be addressed later if needed. In the meantime, please know that a partially numb tongue is very, very easy to get used to. At first it was so swollen that I was alarmed, but that disappeared rapidly.

Bottom line, don't panic. Docs generally tell you the worst case scenario, so you will be prepared, I guess. At least that happened with me, and the outcome was light years away from what it might have been.

With regard to the surgery, you can expect much swelling and drainage tubes and maybe a scary appearance for a few days. I was in the hospital for about a week, and stayed out of the public eye for a few days after that. The neck dissection is not difficult to recover from, nor is there much, if any, pain invoved. Around here, we say that one of those is sort of a cake walk compared to other treatments.

What you and your daughter are facing is very scary, but very doable. Expect the surgery to take many hours, and do not get upset about that. It does not mean things are going wrong, just that it takes a long time. You might want to get an erasable white board and marker for your daughter to use when she wakes up, because she most probably will not be able to talk for a while until the swelling goes down, or if she has a trach. That is also something not to worry about. I had one, and before I left the hospital it was removed and a bandaid placed over the hole which healed quickly. One must look very closely to see that I ever had one.

I am very glad you found this site. Whatever you and your daughter face, there will be someone, and most probably many someones, who have walked the same path. We got through it and you and she can also.

Now take a deep breath!

Joanna & David, Thanks so much for your replies. The white board is an excellent idea - I'll definitely do that! Panic was indeed my first reaction & I've been in that state for the last month since we began this ride. I'm SO glad I found this site. Being able to correspond with people have been through this is invaluable. I'm sure I'll have more questions.
Bonnie

Bonnie, have youall only seen one Doc? If so, you might consider getting a few more opinions from people in the Head and Neck cancer field[ and not just surgeons] before she goes any further. Good wishes to you both. Amy

Amy and David, sometimes one doc/opinion is enough. I presented with an ugly tumor in my mouth and shortly thereafter a huge lymph node. It made perfect sense to me to get both out as soon as possible. I also checked out the doc's credentials, training, and experience, spoke to a couple of his patients, and was satisfied. I agree completely that the more educated opinions the better, but I am just concerned that when there is a situation where second or third opinions are not available, we might be sending the message that the treatment will therefore be inferior, which is not necessarily the case.

Not trying to start anything here, just presenting an alternate view.

Bonnie,
Welcome to some comfort and help from this site. I just went through my husbands second surgery yesterday. Tom's first surgery was not to remove cancer but a "cyst" that we later found out to be a tumor. Tom has SCC, r. tonsil primary, and the second surgery was to do a modified radical. Doc also located some tissue on his tonge that looked suspicious. So that may come back with cancer and doc said they would hit it harder with the radiation treatment coming up in a few weeks.
My experience was and is probably much like your family's. Shock, disbelief, afaid. But now Tom and I see that there is so much hope and while your life does change, slurred speak, can't eat the 3" hamburger, but 1" gets down fine. We are begining to learn we are stronger than we thought. Also we are in a hospital this time that has a team and finding we are learning what questions to ask. I would say the most important thing is to get your questions answered until you understand the answers. I have had to learn to be brave and ask again, until I understand, and our docs have all done a great job answering our questions. We did get more than one opinion, but in the end it was the same course of treatment. I must say, at this point, I feel very comfortable and pleased. You'll get to know what your level of comfort is and will get through this experience too.
Best Wishes to you and yours,

Joanna, I think we all are trying to help so no one should ever take offense to anyone's opinion. The more comments we can all share the better off the author is. I hope the doc & treatment I chose was the best offered, that's all any of us can do.

O.K., I have been mulling over this response for an hour or so now: Whether to post to this at all, or if I do, what exactly will I say, and who might I offend? But--fools rush in where angels fear to tread--- If we[John and I] had "do overs", we would NOT have taken our referred Otolarangologist\Surgeon\Oncologist opinion as the only approach. His field is surgery- no ifs, ands, or buts. We had no second opinions, no tumor board conferences. And John's treatment, thus far has failed to cure him. He might not have been cured by any means- noone can say- but I do have a strong feeling that the journey so far might have been easier if there had been a team approach to dealing with his issues. I truly feel that a major Head and Neck cancer center is paramount in dealing with this disease- this is not a new idea, read this site- unfortunately, many of us do not arrive here until too late. Amy

This is a public forum and none of us are doctors - just patients and caregivers sharing our experience, strength and hope. All of the posts on this thread have valid points.

Surgeons typically like to cut.

The "Tumor Board" is a mechanism that many CCC's employ where all of the patients doctors convene and jointly hash out the best treatment protocol, then they present the options to the patient. It does seem a little wierd that you haven't even seen the MO or RO yet. It is also strange that there has been no PET (or PET/CT) as part of the initial workup. The MRI is a very accurate and detailed scan for soft tissue. CT's are more commonly given for treatment planning purposes for radiation therapy.

By the way, my PCP is a head & neck surgeon and he recommended against the surgery.

Please bear in mind that each treatment plan is unique and each patient responds differently to treatment. So many of the responses you get should only raise more questions to ask so that you may be your own advocate and be comfortable with the treatment plan that you select.

Definition of "differentiation":
"In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably."
Source NCI Cancer Definitions. http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=46445

What this means in laymans terms is "poorly differentiated" tumors invade soft tissue, muscle and even bone.