The title says it all. I'm 46, and besides being fat and having Type 2 diabetes, I've always been pretty healthy. A few weeks ago, I chomp down and an almond sliver goes into my gum, it swells up and stays swollen, starts to bleed. My doctor says "Yeah, you infected your tooth, see the dentist." The dentist freaks out, sends me to an oral surgeon, who sends me to an ENT, who sends me to another surgeon, who debulks the lump and pathology comes back as SCC in the gum and lower jaw. Surgeon doesn't think it's made it to the lymph nodes, or anywhere else. PET scan yesterday, waiting on results. Mandibular resection scheduled for the week after next Meanwhile the lump is already starting to regrow in the week since the debulking.

I'm looking at 5 year OC survival rates, and trying to tease out some hope. But it's not working. The doctor says he thinks we're catching it early, and I hope he's right. But what feels so unfair about it is, other than the lump, an itchy cheek, and maybe a sore throat, I feel fine. Like really fine, better than I've felt in years. I'm going to go out and chop some wood later, and rough house with our 4 year old. But in the back of my mind, it feels like I've been given 10 days to live.

I'll fight, with everything I have, to beat this thing. But how do you get your brain around it? How do you not take it as a veritable death sentence?

Your story is kind of like mine ... we weren't even thinking cancer, and I had a surgery to remove a non-healing sore, and Oh, look, cancer! Except yours sounds a lot harder, and I'm sorry. There are lots of folks here who HAVE beaten the odds, though, and you hold on to those, and follow their advice as much as you can ... that's what you do right now. (Some of them come on to all new posts and give good advice ... I highly recommend heeding it! I couldn't do all that was suggested but I wish I could've.) And write down ALL the info the doctors and nurses give you, because it ends up being a lot to remember ... I had my mother with me at most treatments, as my driver, and that helped a lot (my stepdad watched the kids, so my husband could work ... we homeschool, and that was sure interesting). Take help when it's offered, put them on a list, and then call them when you need them. You may not right now (after all, we didn't feel sick up front!) but if you end up in chemo or radiation territory, you'll want reinforcements. Hope you don't have to, but doesn't hurt to be prepared.

And ((hugs)) ... everyone here is rooting for you.

Is your surgery being done by a surgeon that treats head and neck cancer? Do you live near any cancer centers?


I am a little farther in my journey than you but our stories are similar. About mid-August, large lump on underside of my tongue that was painful, went through a lot trying to get a diagnosis and a biopsy. Biopsy came back squamous cell carcinoma of the tongue, just had surgery to remove it on October 1st, lost a fourth of my front tongue. Also had a left side neck dissection done. I'm home and healing and hopeful that my journey is over once I'm healed and learn how to use my new mouth.

[quote=VirgoMomof3Boys]Is your surgery being done by a surgeon that treats head and neck cancer? Do you live near any cancer centers?[/quote]

The main surgeon is a surgical oncologist who used to be an ENT. My wife is a nurse (ortho supervisor), and when she asked her extended network, he's The Guy, at least in this area. He's honest/blunt, and so far, I don't want to have a beer with him, but he seems to be on the 'be super aggressive early so we don't need to deal with it again" level.

The hospital calls it a "cancer institute" and it's part of the Memorial Sloan Kettering Cancer Alliance, so I don't know if that counts as a cancer center or not?

Sounds like you're in the right network of specialists, but a second opinion is still worthwhile. "Super-aggressive" is along the same lines as surgery ... once it's done, you can't take it back. I had some doctors who went the super-aggressive route ... not that the treatments themselves were all that out of the ordinary, but I think they were above and beyond what my stage warranted, and I've had to deal with the fallout from that. They got twitchy because I had a very rapid recurrence, even though it was still very mild. I'd done second opinions the first go-round, so I didn't worry so much the second time ... which was not a good plan. In hindsight, just knowing I'd had the second opinions would do me a lot better now.

That said, it may still be just exactly the treatment you need, and the second opinion reinforces that ... which is GREAT to hold on to during the struggling times.

Take a breath. It sounds like you have got things covered. My dad had two bouts of oral cancer in his upper palate. He has a prosthetic and he is 95, his last surgery was 10 years ago. He never had radiation although it was recommended after the first surgery. Having OC is not automatically a death sentence. There are lots of check ins of long term survivors on this forum, check them out. That said, I know how you feel. I was diagnosed almost a year ago with SCC on the right side tongue. I had surgery in Feb and started 30 rounds of radiation in March. I just had my first post treatment PET scan and am seeing my doctor this week, hoping all is good as the doctors assure me it will be. You are in the right place for support and encouragement along your journey, we've all been there. The treatment for your cancer is going to be rough, no way around it, OC treatment is tough. But you will get through it! Keep us updated and we will be here to support you!

Hi Rayster. Sorry to hear your diagnosis. There's no two ways around it, its a scary time! Your feelings are completely normal, I think most people feel that way at the start. I certainly did.

The people here are patients and caregivers, and every journey is different. We're not medical professionals and can't give medical advice but it sounds like you have the medical stuff well underway.

The waiting is hard. I found it easier to break down into steps. The next appointment, next treatment, next test results etc. There comes a point where you've done all the admin and side issues, and you just have to wait for the next step. My next step is my checkup in December, and no matter how many times I rub my neck and do test swallows there's nothing I can do before then. Yours is your PET results, then your surgery. If you think too far beyond that it will do your head in. Take it one step at a time.

Googling is very good for helping you understand what the doctor has told you, and I found it helpful in framing my questions for the doctor next time I saw him. You only have a limited window to discuss things directly with the doctor, and there's a lot of information to process. I see you've Googled OC survival rates, which is extremely common and I did exactly the same thing. The problem is you're actually asking Google the wrong question. You don't care that xyz number die from OC, or even the odds. The question you want the answer to is "is this going to kill ME?" Thats the real question. Of course even the mighty Google doesn't know the answer to that one. But it is a useful tool for getting your head around medical terms.

Keep posting your progress, you'll be surprised to find that most things someone here has experienced already, including weird things that aren't on your radar right now. Its a tough road, but you're not alone.

This was what I copied from one of ChristineB's posts:

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available. They use a team based approach where all the experts are on the same page. They work together to create your individual treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. Remember your physician and medical team work for you so choosing the right team and facility are crucial.


https://www.cancer.gov/research/nci-role/cancer-centers/find THIS IS THE LINK TO CCCs

[quote=DeniseG]Having OC is not automatically a death sentence. There are lots of check ins of long term survivors on this forum, check them out. That said, I know how you feel. I was diagnosed almost a year ago with SCC on the right side tongue. I had surgery in Feb and started 30 rounds of radiation in March. I just had my first post treatment PET scan and am seeing my doctor this week, hoping all is good as the doctors assure me it will be. You are in the right place for support and encouragement along your journey, we've all been there. The treatment for your cancer is going to be rough, no way around it, OC treatment is tough. But you will get through it! Keep us updated and we will be here to support you!
[/quote]
Good luck to you, and thanks. Trying to put things into prospective. People survive this, why not me? And everyday is another day closer to better treatments and the status quo changing, right?

[quote=OzMojo]The waiting is hard. I found it easier to break down into steps. The next appointment, next treatment, next test results etc. There comes a point where you've done all the admin and side issues, and you just have to wait for the next step. My next step is my checkup in December, and no matter how many times I rub my neck and do test swallows there's nothing I can do before then. Yours is your PET results, then your surgery. If you think too far beyond that it will do your head in. Take it one step at a time.[/quote]
So this is exactly where I am right now. By nature I'm a planner, and I like to start at the end, quantify risks, and work backwards. That's not working for this. So trying to focus on the next step, and being ready to roll with the punches. Resilient rather than planful. So focused first on what needs to get done, just in case. Transition plan at work. Financials, house stuff I can take care of in the next week, recording messages for my wife, son and friends, birthday cards for my son until he turns 18. I'm limiting that scope to "surviving the surgery'.

Then I'm a blubbery mess.

Get my head out of it, and plan for the near future. Spent the weekend doing family stuff, mostly feats of strength so I remember what it's like to be original version me. But I already asked the plastic surgeon how quick the leg will rehab if i make it off the table. He tentatively okay'd planning for a vacation to Scotland in April. So bought travel books and started talking about itineraries. My buddy is going to come help put in a bathroom in our basement next weekend. I've been putting it off, and the wife is questioning whether we want to do it now, but it's a twofer. It'll help with convalescing - it'll be a lot easier for her to work and keep the house presentable w/o help, for all the friends and family that'll show up, if I can be stashed down in the family room during the day. And once I'm good, we'll have a much needed BR down there. And it gives me a near term future project to focus on. So, a three'fer actually.

[quote=OzMojo]Googling is very good for helping you understand what the doctor has told you, and I found it helpful in framing my questions for the doctor next time I saw him. You only have a limited window to discuss things directly with the doctor, and there's a lot of information to process. I see you've Googled OC survival rates, which is extremely common and I did exactly the same thing. The problem is you're actually asking Google the wrong question. You don't care that xyz number die from OC, or even the odds. The question you want the answer to is "is this going to kill ME?" Thats the real question. Of course even the mighty Google doesn't know the answer to that one. But it is a useful tool for getting your head around medical terms. [/quote]
Yeah, and that's a biggie. I like numbers in everyday life, but they're not really spectacularly useful here. So I've kinda pulled back from that. I've been reading Ian Gawler's "You Can Conquer Cancer" and the chapter on dealing with the prognosis was helpful. Now if I could just get the analytical part of my brain to settle down when I'm not working, I might be able to hold it together.

[quote=VirgoMomof3Boys]This was what I copied from one of ChristineB's posts:

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available.
[/quote]
I'm going to try and get in at one of the places close-ish to me this week.

Rayster - I'll chime in even though my part of the road on this particular journey was a great deal less bumpy than yours will likely prove to be. It might be helpful if you read Stephen Jay Gould's account of his cancer. Perhaps you know about him. He of course was a brilliant scientist, and he knew that statistics are exactly that: just figures that help people get their mind around large-scale events. They are entirely objective and each of us is different. You say you like numbers (I can't even remember how to do long division...) so you'll understand this more than I. Here's a brief about him:

https://www.mesothelioma.com/blog/a...ma-stephen-jay-goulds-cancer-journey.htm

It's important to note that his type of cancer was far less survivable than what we all face (generally speaking), yet he got through it for many, many years.

Other than that I have nothing to offer but my good thoughts and friendship. My own H&N cancer experience was of course rough, but I got through it and so will you. You're part of our family now and we're here to help, to cheer, and to support whatever you're going through.

When I was first diagnosed a good friend told me "remember when its 2.30am, you're sitting on the floor of the shower crying, tell yourself your not alone and you'll be ok." Of course at the time I had no idea, and shrugged it off as well intentioned advice. 2 months later I was sitting on the floor of the shower crying, and I smiled when I looked at my watch. It was about 2.45am, so she was pretty close.

I started out worrying about my kids and grandkids, but I found when you're sick the world gets real small. Sometimes its no bigger than the toilet you're throwing up in. I was surprised to find cancer is the last thing on your mind when you're really sick. You're more worried about what new combination of symptoms will my body throw at me today.

Every cancer journey is different, and you'll have different experiences to mine. Keep posting your progress up here, there are plenty of caring folks with good ideas.

For you folks that are long term survivors, do you ever get back to anything near normal again? The thing that rocked me, probably more than anything else, is the utter feeling of vulnerability, and the idea that that vulnerability will ride with me forever. I'm terrified of the idea of recurrence, and I can't see that ever fading. It's literally like the boogieman actually came out of the closet; how do you sleep at night after that?

Your normal changes. You'll see me weep a bit here on the forums, because this is the only place I really can ... it's a good place for advice and sympathy. But in real life, I have to try to just keep moving forward. I've got a lot of new challenges, but there's still a lot I can do. I've been a Scout leader (Girls and Boys both) since my kids were little ... I still do that, just have to make a few more accommodations when we go camping. (And honestly, I think I'd have to do that anyway ... I was one of the few adults who didn't like taking along big mattress pads before; now I need one. LOL. That might just be age!) I adjust the menu for myself. But those are also good lessons for my youth, so we play it that way. And my co-leaders know there might be days where my energy just isn't there and they have to take over. (Since I'm generally ADD and high-energy, again, a break would be needed on occasion anyway ... just more now than it used to be.) That's some examples, anyway. Home is crazy, too, but who knows ... life changes and it could be that anyway. My family is great and the whole mess brought us closer together, so there's that. And I have a good therapist (had one before, started seeing him again) who helps me through the really rough times.

Welcome to OCF, Rayster! Im so glad you have found our site to help you get thru everything!!! Being among other oral cancer (OC) patients/survivors who have already been thru the hard times helps make it a little easier. We completely understand every single thing you are dealing with and we know how to make this as easy as possible. When you get a cancer diagnosis out of the blue it is NOT easy to handle mentally. If you have not yet checked in to see a therapist, Id suggest doing so ASAP as it can take weeks to get in as a new patient. Many patients will need the help of a therapist and anxiety meds to get thru their diagnosis, treatment and recovery, the meds can also take weeks to kick in. Its nothing to be ashamed of, even quite a few caregivers need the extra help as well. I found it very helpful top focus on what is within my control... any "what if" thinking is unproductive and just making everything harder than it needs to be. Try to stay as busy as possible to keep your mind engaged with positive things like reading a good book, doing complicated puzzles, watching a complex movie are all a few things to help get past this initial shock phase. Every single day push yourself to do only positive, productive things that will in the long run help you down the road when you will be going thru treatment and/or recovery.

At first theres a million an d one appointments (at least it sure seems like that many) which have patients running all over the place. As you tell people about your illness, many will offer their help. At this time its far too early to know what you will need. Tell everyone you will let them know when the time comes what they can do to help. Be prepared for friends and relatives to have varying reactions to your news. Some who you are closest to may run for the hills pulling a shocking disappearing act while those who arent close may turn into your biggest supporters and cheerleaders. Write down every single person who offers their help with complete contact info. If possible after you get a decent list going (10-12 or more) people think of one of those people who could be in charge of relaying info to everyone. Its a good idea to select someone other than your spouse as the info relay person. There really are tons of things others can do... take your little one for a day of fun, walk the dog, mow the grass, pick up groceries or cook a meal for your family, pick up prescriptions, do a load of laundry, drive you one day a week to rads (if you do rads), sit at the hospital taking a "shift" so your spouse can tend to things at home are just some of the little things that can help make this so much easier for you and your spouse.

Do your best to think positive and not focus on the doom and gloom of worrying about things that are too far down the road. At this point you do not even have a treatment plan in place so its very very early to even consider a recurrence. Most patients do NOT have recurrences! Those being treated at the countrys top comprehensive cancer centers (CCC's) have the best odds of not going thru a recurrence. If at all possible try your best to have treatment at a CCC. Please let me know if you need the list of CCCs. I suggest a better focus of energy is to focus on something to help get your medical team selected and get a second (or third) opinion. Any extra stress you bring upon yourself at this time only makes things so much harder than this needs to be. Read posts here and info on the main OCF site to learn about your illness so you can become a strong advocate for yourself. Of course none of this will be easy but with us by your side, you will get thru this and get back to your regular life. It will take time to bounce back but thats getting too far ahead. Take things day by day.

Hang in there!!!

Rayster, welcome to OCF and very sorry that you had a reason to join us. I heard those dreaded words in 2005 when my sons were still teenagers. I wasn’t sure I would live to see them graduate from high school. My journey had a lot of bumps in the road including a recurrence in 2010. I had a lot of side effects but overall I am doing well and enjoying life. I personally know many long-term survivors. Most people do not have a recurrence and most OCF forum members rarely post on here after they are done with treatment. This disease can be aggressive and you should treat it that way. Treatment can be brutal, but it is only temporary. If possible seek a second opinion at a major cancer center that treats a lot of oral cancer patients. I was initially treated locally (didn’t know better), but when I had a recurrence, I went for a few “second” opinions and ended up at Johns Hopkins in Baltimore. I wish I had started there for so many different reasons.

Wishing you the best!

So just wanted to post a quick update, and a thank you to the group. During the initial rush of info and emotions, finding this forum was like finding a log to cling to when you're being swept away in a flood; the flood's still happening, but at least you can keep your head above water. My very deepest thanks to all for the shared advice, and experiences, and simple good wishes.

So I'm 3 1/2 weeks post mandibular resection, and about 2 weeks pre-radiation. Before the sugery, I took the time to bundle all my records and go to a dedicated CCC for a second opinion. They confirmed the treatment plan, and while a lot of the doctors were nice, the head of surgery came across very "you're just a number" to me, and they didn't offer the same reconstructive and nerve grafting options my local hospital did. Not doubting their skill or their outcomes, but factoring in the logistics of trying to do the surgery and aftercare and hour and a half away from home, the surgeon's attitude versus the one I had, and needing to wait at least another month to redo all the consults, I opted to stay the course.

Honestly can't say enough good things about the ENT surgeon. He chased down everybody, Plastics, Imaging, making sure the surgical plan was buttoned up, made the radiologists check and re-check their findings; the day before surgery the last recheck confirmed that the cancer was further along the jaw than they'd reported, and also in one of the nerves we expected to graft.

Surgery went off without a hitch, took 13 hours. They'd told my family I'd be in a coma for a day or two after, but apparently things went well enough that they woke me the next day. Out of the hospital in 13 days, with the the graft alive and kicking, the primary neck/throat incision healed, the NG tube pulled, swallow test done and GTG on soft solids, weight bearing on the graft leg with a boot and a walker.

Went home with a trach tube in my neck, but it was pulled last week, and is almost healed. Final pathology from the surgery said that the lymph nodes were lit up on the PET scan, but never had cancer in them, they were reactive, probably from an actual infection. Also, confirmed negative surgical margins everywhere there was cancer, so chemo is off the table. Been having home health come in for wound care and physical therapy; graduated skipped crutches and graduated to a cane last week. Rehabbing the leg has been the hardest part of recovery to this point. I've been meeting with the radiation oncology team, prepping for treatment.

My doctor's tempering expectations, but says this is good news in terms of prognosis. So that's where I am. Things have probably gone as well as they could have gone under the circumstances, and I'm still standing, with a decent chance to keep standing for a while.

Good to hear this! Very glad for you!

Rayster - you sound like you have a good plan in place for yourself! Also, while you're recuperating keep in mind that you will get to "normal"...it'll just be a "new" normal...

Wow! You've been on a wild ride lately! So glad to hear surgery went well and your recovery is moving right along. I am also two weeks out awaiting radiation with no chemo so here's to hoping that leg of this journey goes smoothly for us both.

So glad to hear this Rayster! You sound more positive and in control now too. Radiation treatment will bring it's own set of difficulties so come back for advice and encouragement. Christine will tell you to eat all your favorite foods now, pack it in! She will also tell you to pack in the calories while in treatment and how to do it. Hang in there, you're doing great!