My SO was diagnosed with ssc on the floor of the mouth. He had a CT scan showing 2 lymph nodes that need to come out also. Yesterday we were told that surgery is going to be scheduled. My SO concern is that the cancer will spread more by next week while he waits for scheduling. has anyone had to wait long for surgery for floor if the mouth cancer? We are real new to this and just trying to learn what to expect and learn from anyone who has gone through or us going through this.Thanks for your help.

Hi Jts,

Welcome. This is a great forum and chock full of information and support. You can quell your SO's fears about the cancer spreading that fast. It's already been there for some time. I was diagnosed Nov. 21st 2012 and the surgery to remove the cancerous nodes was on Feb. 7th 2013.

Hang on...there's a hell of a ride coming. Read as much as you can here, take notes, ask questions and stay away from Dr. Google. Just so you know...Dr. Google is currently being sued for false diagnosis/information and causing undue fear and stress. I heard he is actually a computer algorithm devoid of human emotion and compassion

Treatment is brutal but doable. I'm sure many will chime in with great tips and advice.

Positive thoughts and prayers

Thanks for your reply and words of advice. The doctor said the tumor on the floor of his mouth is small and said no chemo or radiation should be needed. However, I wonder if that changes with the new finding of involved lymph nodes. I will look around this site and learn as much as possible.

With my surgeries, they went ahead and had the lab do quick pathology checks, so they could remove more right away if needed. My first and recent surgeries were on the right side of my tongue, and my other surgery was a neck dissection to remove clumps of lymph nodes (30-some) as preventative. On both my tongue ones they were very careful to go till they got clear margins. I think that is standard, as least to try for. So even if it spreads a bit in the interval, that does not mean they won't try to get it all.

You get more thorough lab reports later, of course, when they have had time to analyze all the pieces.

Hi JTS - Yes, you found about the best place on the planet for the information you seek. None of us are doctors, so we can't give actual medical advice, BUT telling you what they did for each of us is about as close as you can get. Everyone is different, you will hear that over and over here in your new family. If you read enough you will see the slight variations in the diagnosis and treatment that other members got. Don't be alarmed if yours is a little different; your cancer (or that of your SO) is different, so your treatment will be a little different.

Now, as for how quickly do they get to your surgery or to your treatment, none of us like having to wait even one extra minute when we find out about this new invader in our bodies. We want it gone ... yesterday. Unfortunately, wait we must, and it often seems like an eternity. After my surgery I had to wait 6 weeks before radiation started. I thought that was excessive and that the tumor was just growing by leaps and bounds every day. Then the doctor tells me we needed to wait a little while for surgery site to heal before zapping it with horrendous amounts of radiation; that actually made a lot of sense, but I didn't think of it while going nuts waiting for rads to begin.

Right now, the doctor has said you probably won't need radiation or chemo. Don't take that too much to heart. That doc was a surgeon, for the most part they believe surgery is what takes care of most cancers. There are other specialties that will get involved as time goes on. They may think otherwise, ie rads or chemo is still needed. If you have gotten your brain conditioned to not needing rads or chemo and then all of a sudden you do, it will come as a BIG shock (ask me how I know this). Another of our family members, Bart has a saying about just this subject ... "don't attach to outcomes". When you attach to a particular outcome (I won't need radiation) you develop an emotional stake in the outcome. Then, if the decision goes the other way (you do need rads) you've set yourself up for a big bummer, possibly even depression; and depression is exactly what you don't need while fighting this demon in your body. SO, the right way to keep your head straight is to just accept that you have no control over the beast. If I don't need rads or chemo, great; if I do, okay let's get it started. Afterwards, if the cancer stays away, great, if it comes back, okay what do we need to do now to keep fighting the beast. This approach allows you to keep a positive attitude throughout the whole battle. Bart has had several recurrences thoughout his long term battle and he still to this day maintains a wonderful positive attitude that he shares with other family members just beginning the journey. Listen to what he says, he knows how to help you keep your mind straight.

Okay, I've said enough for now. There will be more later, but you have enough new stuff to chew on for awhile. Unless your SO also joins the forum, you are the one who will have to teach it to him/her.

Welcome to your new family, we will help you every step of the way through this new journey. It's what we do.

Tony

Thanks again for your advice. My SO has prepared himself for whatever the docs say. He just wants to get things moving. The faster the better. As for me, this is not my first rodeo so I know how the whole thing works. My late husband had stage 4 non small cell lung cancer. It was found in his brain first. I know all about chemo, radiation, the gamma knife, cryoblation,and keeping on top of the cancer as it reappears. He was suppose to live three months if he was lucky. It was three years almost to the day. I was widowed at 40. These groups helped through that so I wanted to find one again.My SO also lost his father to lung cancer. I told him that all cancer is not the same. Told him that we will just have to stay on top of this. He has a good outlook just is in a hurry to get it gone as everyone is.

Hi jts,

You have a lot of first hand experience dealing with cancer. Your SO does as well to a lesser degree. Getting hit with a cancer diagnosis throws everyone into a spin. What helps get both feet planted is empowering oneself with knowledge and education about the road ahead.

Some take a passive role, some bury their heads, some take on the challenge head first. Unfortunately your role is a support and caretaker role.

Encourage SO to join here, learn as much himself, advocate for himself and lean on you when support is needed. I am sure most be people feel better and do better the more educated they are about the situation they find themselves in. Best of luck. Don

Welcome Jts. Actually having surgery by next week is pretty quick in my town or is it just be be scheduled? Averages can be a month or two waiting, especially with popular surgeons at a top rated CCC. Some tumors are aggressive, spread more quicky than others, depending on tumor grade, so that may be consideration. On two seperate occassions, I had tumors pop up while waiting for surgery, a few weeks, to remove another cancer, and was lucky to be vigilent, and discovered them, and had both removed in one surgery, twice. Maybe express your urgency, and see if there are any earlier openings, which did me no good lol. As time waits for no one, neither does cancer, but doctors seem to be in a different time zone than ours, and hopefully know more than we do. As far as any further radiation or Chemoradiation, it also depends on the tumor size, thickness and other pathology from surgery.

Best of luck with everything.

Don,
I told my SO about this site. He said he might check it out. I also said it helps to talk with people who are also going through this cancer to get knowledge. He isn't one who cares for the internet much. He has already said he is going to do what it takes to fight this. People who knew me when I was caregiver for my late-husband did not like that I am the kind of person who, much like my SO, faces everything head on. I had to stay strong for him and am doing the same again. I am attending all appointments, taking notes for him, and writing questions he has.He knows I will stay by his side.

Jts,

Welcome and sorry to hear about your SO's diagnosis. It sounds as though you are on top of things and you've certainly come to a forum where you will find an incredible amount of support.

I had the same concerns as your SO regarding wait time as we (my mom) waited about five weeks before she underwent surgery. I never rule out second opinions, so we actually sought out five opinions over a period of a few weeks - and all of the docs we met with told us that waiting several weeks wouldn't be detrimental.

My thought was that every second is critical, but our docs were confident that it would be okay to wait a few weeks. I still haven't wrapped my brain around waiting for treatment, and I doubt that I ever will, but so far the docs we've encountered have been pretty accurate when it comes to their opinions.

As Tony pointed out, a surgeon is probably going to recommend surgery. That rings true in my most recent experience. Our surgeon suggested surgery and our chemo doc recommend chemo prior to surgery. A treatment decision was made after the docs (surgeon, chemo specialist and radiation doc) met collectively to discuss and debate my mom's overall situation.

I wish you both the absolute best, and please make sure to take care of yourself too.

Regards,
Dave

I hope your SO does check out the forum, and takes an active role in his treatment and learning about his care. From his saying (going to do whatever it takes to fight this) it sounds like he has the proper attitude for this biggest battle of his life.

Unfortunately, some don't have that attitude, and then everything just gets dumped on the caregiver. I think we have one other CG on the forum whose SO has just basically given up. It it putting a tremendous stress on the caregiver.

It would be hard for me to fight for someone who I think has given up already. I would have to love them an awful lot.

Here's hoping round two of your caregiver burden stays reasonable and that your SO remains receptive and agreeable throughout the battle.

take care, he is lucky to have you.

Tony

Hi JTS, and welcome. I'm so sorry that your family is facing this battle. It's heartbreaking that you've been saddled with facing cancer twice, but you sure sound up to the battle. You'll find lots of comfort here, I sure have --

Stay strong.