Three weeks ago I was a healthy person with my own consulting business looking forward to a long life with my grown children out of the house and terrific second husband.
I had a persistent mild sore throat and some swallowing issues. Feb 24th saw the ENT who found the tumor and scheduled me for a biopsy. I got on the web and found the top guy in New York, saw him on March 3rd and am scheduled for transoral robotic surgery and a neck resection in New York City this Friday. The MRI and PET show bilateral lymph nodes which from my internet research doesn't look good.
I am more worried about going through radiation and chemo and the short and long term side effects than I am about the surgery which I know will be top notch (he's done almost 200). I am looking for anyone with experience on other than the standard cisplatin and high dose IMRT radiation that I am certain will be recommended.
Hoping for the best but expecting the worst.
Lizzie, sorry to read your news, and welcome to our little online community. You've come to the right place for support and information.
As I had two of the three standard therapies I can't offer you the info you seek on alternatives, but I'm sure someone will weigh in.
Sounds as if you've got a great team on your side and I'll be sending the good thoughts your way on Friday.
David 2
Oh, and rereading this...
Only those of us who've sat there in a doctor's office and been told we have cancer, and metastatic cancer at that, can know how it feels. Which is to say catastrophic, numbing, terrifying, cataclysmic... you choose the words. The feeling is the same.
And we all then process it in our own ways. All of this is to say that it made me sad to see "expecting the worst" in your post. For me anyway, I never had any doubts that I'd get through this. And I'm not by nature a glass half full kind of guy and have had long bouts of major depression over the years.
We're in the realm of feelings so common ground is difficult to find. Right now you're likely feeling a lot like those poor earthquake survivors in Japan: lost, cut off from your emotional moorings, fearing the future.
All I can offer in the way of solace is to urge you to keep things in a realistic rather than a pessimistic place. No question that you (and all of us) face an uphill battle against a determined foe. But I found it useful to place that foe in perspective and remind myself that I was a person of determination and inner strength, that I had a medical team uniquely skilled to help me (and which yours certainly seems to be) and that every day that I was around to breathe the air and contemplate how great it is to be alive is a blessing. And, I should add, I'm not a religious person. This is about being human.
Ok, enough of this blabbering! I'm thinking about you.
Welcome - and yes sorry you have to be here. Frankly I am sorry this forum has a reason to exist... But I'm glad it does.
First off I'd like to say.- don't look at the stats.... There are a melting pot of people thrown in to get those numbers, and tumor aggressiveness, age and other illnesses are not necessarily taken into consideration.
Secondly - alternative therapy? My suggestion is - have your surgery - and then post op - see what else is available to you in terms of treatment - maybe by getting a second opinion - perhaps a clinical trial? But don't leave it too long time is of the essence.
I would also like to tell you - I had a tongue tumor - had it removed with wide margins - had one lymph node involved - and have had the neck dissection and part of my tongue rebuilt - I am starting radiation and chemo this Friday, and while it's no walk in the park and something I am not necessarily looking forward to, I am glad I'm having it. cisplatin is usually only a 2 or 3 dose thing, and radiation for me will take 6.5 weeks. It's hard but many here have gotten through it.
There are side effects - of course -but not everyone has them all. It's a very individual thing. If they recommend it and you have a second dr. do the same then I would do it. It's six or seven weeks that could very well save your life.
Read through the forum, it will give you scads of useful info, but take into consideration none of it is your story - you will right your own and it may have an entirely different set of ups and downs.
Best of luck Friday... And remember to bring a pen and paper or tablet to communicate. Also try to have someone around to advocate for you if need be. Take care.
Lizzie:
I, too, hate that you had to join us, but you'll be glad you did. People on this Forum have every type of oral cancer experienc(s) you could ever imagine - and you get it first hand. I will send a prayer your way for a successful surgery Friday and be thinking of you. There are side effects to radiation, for sure, but it beats the alternative.
YOU CAN DO IT!
julieann
Lizzie, I may have given the wrong impression in my post. I'm in no way endorsing what many people think of as "alternative therapies." I understood your question to mean specific medical treatment that might lie outside the boundaries of what the majority of us on here have been through. Cheryl has it just right.
D2
Where is the Primary?
Were you a tobacco user?
Welcome to OCF, Lizzie. Im sorry you are here but you are very lucky to have found OCF to help guide you.
The tried and true ways to get rid of oral cancer are surgery, radiation with or with out chemo. Thats it! Anyone who tells you differentlky is a liar! There are millions of dollars spent of false cures. Just read the quackwatch.com and you will see all the bizarre treatments that scammers attempt to push off as cures. Best advice I can give you is to get treated at a cancer center and to eat everything you are able to now before treatments begin.
Best wishes with your treatments.
No, lifelong nonsmoker with a healthy lifestyle (glass a wine with dinner, lots of vegs, little beef, get my checkup, mammogram, colonosopy). The local ENT told me I shouldn't have this cancer, I am not a candidate.
The primary is on the aryiglottic fold in the supraglottic area of the larynx. The doc thinks it's likely a HPV positive tumor. I hope it is since he told me those have a better chance of survival.
Thanks for responding.
When I say alternative I meant those treatments in clinical trials or used for other cancers like monoclonal antibodies, other chemotherapy agents and proton beam radiation. I am not interested in any quack stuff.
On the main OCF pages there is info about clinical trials. You can ask your doctors or check your hospitals website too. Nobody is interested in the quack stuff, but people are taken in everyday by it. Makes me ill thinking of how low a person would stoop to make a buck, scamming cancer patients!
The standard of who an oral cancer patient should be has changed dramatically over the few years Ive been on OCF. I didnt fit the bill either but I went thru it 3 times.
Lizzie, I don't drink, have never smoked, don't do drugs, am a vegetarian, and work out 6 days a week, yoga and cardio with some weights... I don't fit the bill either...l and strangely enough there are a lot of us here - the face of oral cancer is no longer relegated to the elderly and smokers and drinkers. It is what it is...
Best of luck and blessings!
Lizze,
I am 2 weeks & 3 days out from my IMRT and Cisplatin, and I still can't believe it happened to me! I teach choir, singing, and general music in a small town in Kansas to middle and high school students. I do not fit the profile. I have never smoked, have never drunk a lot of alcohol of any sort, mostly wine when I did. My husband is also great, and my three grown children are fabulous. My 97 year old aunt I think always thought I took after her in health. I could go on, but you get the idea.
I wanted to avoid radiation and chemo so badly. I had the smallest lesion on my tongue, it seemed that I would get out of it relatively easy. Then for some reason I had this metastasis within a month after it was removed. Unfortunately when the lymph node was removed and the lab worked on it they found microscopic extracapsular extension. That takes you back into radiation and chemo.
I had my treatment at MD Anderson, which is 11 hours away from my home, but was worth the trip. I felt like I got great treatment. I weathered it all better than I thought. I am back home now, feel not bad, but not good either. At least my neck does not burn like it did for the last week of radiation and the 1st week post, and my sores in my mouth are much better.
I could go on, but what you really need to know is that to get well, which is I'm sure what you want, you really are going to need to do whatever that excellent doctor in New York suggests, or what the oncologist or tumor board suggests. As you already know, they are going to say radiation and chemo of some sort.
So this post is somewhat like Cheryl's.
You won't have quite the same life, but who is to say it can't be better in some ways. And you can win the battle, and enjoy your family, and encourage others. Wish you did not have to do this, but you came to a good spot for meeting others with your disease.
Anne
Lizzie
Whew! So glad you clarified that you don't mean "alternative therapy" but clinical trials or cutting edge mainstream medicine. But now I can't post my sarcastic answer that you need to go to a psychic in order to hear from patients who used alternative treatments since they are all dead.
The majority of us went thru cut, burn and poison but we are still here because of it. One thing about clinical trials is that they don't always work while radiation and chemo usually do.
Still it's always good to explore viable alternatives so here is a link to the NCI main clinical trial page which has info you may find helpful
NCI- Clinical Trials Last but not least, it really sucks that eating right and living healthy don't protect you from getting cancer. You read all these articles about "cancer prevention diets" and then discover that it didn't prevent your cancer.
sorry you had to join our little club.
Charm
Actually - charm you're right - I like the idea of clinical trials - they were talking to me about one but it concerned me a little because they were considering dropping my chemo to replace it... Which might have been ok if half the group wasn't getting a placebo...
I'm glad I wasn't a candidate in a way - it's one thng if you are swapping one treatment for another but for a maybe? That's a little concerning..
@anneo glad you're out... Your case sounds exactly like mine but they did it all at the same time - I had the scans and everything - did a neck dissection and rebuild ( i think mine was bigger than yours -the lesion - but they discovered in the post op pathology I had the one node with a little extra capular activity- that's why I start rads etc Friday - now I know I had my lesion for at least 4 years... And it hadn't spread just gotten bigger... I wonder if the biopsy popped the containment unit, so to speak, and started the movement - it's too bad they don't go in with the intention of removing the entire mass from the outset. I mean at the biopsy stage. just a " wonder why" observation.
Have a great day - I'm off to enjoy one of my last few comfortable breakfasts... Before nuke day..
Sadly we are seeing 3 distinct groups of SCC now:
1. HPV+ with the Primary almost exclusively in the Orophyrnx region. Tonsils and BOT;
2. HPV- with a history of tobacco use, Primary just about everywhere else and
3. HPV- with a non smoking history and same Primary as #2.
Both #'s 2 and 3 prove to be more aggressive and more prone to recurrence than HPV+.
Thanks guys for all the information. I am hoping for an HPV positive. I plan to ask for a second and possibly third opinion about post surgical treatment at other top head and neck centers. If I didn't do my homework and find the robotic surgery in NYC I would have done the biopsy and then open surgery which I hear is far worse.
Lizzie,
My cousin who lives in NYC had his treatment for kidney cancer at Sloan-Kettering. He highly recommends it, and he is cured. He said his surgeon was one of the best in the world for that surgery. I'm sure there are other places, but Sloan-Kettering has a great reputation as a cancer center. Whatever you do, you should not let too much time elapse following your surgery and your "second or third" treatments. And you won't feel just super following surgery, even robotic, so hopefully you've got appointments set up now.
Good luck to you. Sounds like you know what you want, and I hope you find it.
Anne
Hey Lizzie r u going to Mt Sinai?if u are my sister went there also.