Posted By: Katie B Newly Diagnosed - 10-18-2012 10:27 AM
Hello. I am a healthy 38 year old wife and mother of 2. In August I discovered what I thought was a canker sore on the right side of my tongue. It felt uncomfortable to stick my tongue out at times, especially while flossing my teeth. I didn't think much of it, as I first noticed it while we were on vacation, but made an appointment with my doctor when we got back. I actually saw the PA at my doctor's office who tested me for thrush and gave me an oral rinse. A week later nothing had changed and the tests came in negative. She sent me to an ENT who immediately felt my tongue, since by now I had a lump, or what I thought was inflammation, and said that I needed to forget about this being herpes. He initially thought it was a benign salivary cyst or tumor and sent me for an MRI. We couldn't complete the MRI because of a dental implant on one of my lower right molars that skewed the view. I then had to have a ct scan which still was partially obstructed due to the implant but showed that this wasn't a cyst. A needle biopsy was performed which came back as epithelial moderate dysplasia. By now just 3 weeks had passed but it appeared that the tumor had grown from 2 to 4 cm. The doctor said that unfortunately, the surface area was beginning to look like SCC. Knowing the approximate size of the tumor I knew I was stage II. This was a Friday, and surgery was scheduled for the following Tuesday.

Surgery on 10/2/12 confirmed it was SCC. Pathology showed it was stage II. The tumor itself was 3x2.5x2 cm and he removed 7 cm of tissue along the right side of my tongue to the back of my tongue and back of my throat. I am HPV-, which was disappointing as I hear that HPV tumors tend to be indolent.

Today, I meet with the oncologist to discuss the next step. I am not at risk, as I see so many of you are. This is so frustrating! I never smoked, I drink socially. I eat mostly healthfully, exercise, take good care of myself, enjoy my life as much as I can. The ENT believes that the irritant that caused my tumor to grow was the dental implant. He believes the friction of my tongue rubbing up against the implant may have caused this. I'm still grappling with that knowledge, that I paid so much money to fix my tooth only to get cancer.

Everyone says I am handling this remarkably well, and that it's amazing my speech is so close to normal given he removed about 20% of my tongue two weeks ago. I am glad to know that I am doing well. I have no choice but to keep looking forward since I have two little ones at home who need me. Let's see how I handle the oncologist's news later this morning. I would appreciate your good thoughts.

Thanks for reading.
Posted By: Jay Jeong Re: Newly Diagnosed - 10-18-2012 11:04 AM
Hi there

You would be surprised at how many young, non-risk factor people end up with this nasty disease.

Glad to hear you are recovering well and I wish you all the best on the next phase of your treatment plan.

Kind Regards
Jay
Posted By: Anne-Marie Re: Newly Diagnosed - 10-18-2012 11:07 AM
Hi Katie - So glad you found this forum! It's the best place to be for all the latest, accurate information and lots of support from people with experience similar to yours. My son (non smoker) also had SCC under the right side of his tongue and had 1/6 of his tongue removed. THis was followed by radiation. His ENT is known as being very aggressive in his treatment and wanted to make sure there would be no recurrence and so far, almost 6 years later, he is doing just great! He was also told that if his SCC was HPV related, that it would be a lot more successful in recovery but he did not have the HPV test to tell for sure. You mentioned your ENT's belief that the irritant caused by your dental implant may have caused the tumor to grow and from what I've read here, it does seem to be a possibility. I'm sure others will be along with much more recent information for you. Meanwhile, if you check out the main pages of OCF, there is a lot of information that can help you decide on questions you can ask your doctor or for anyone here. Do check back here often and let us know what's happening with you.
Posted By: davidcpa Re: Newly Diagnosed - 10-18-2012 12:29 PM
Katie,

Unfortunately you are at risk as you say as we see a lot of people just like you with the same presentation, i.e., non smoker, young, either sex, casual drinker with forward tongue HPV- SCC. It is just as agressive as that which can be linked to tobacco and to date no one has determined a cause. Please get multiple opinions if you need to, especially one from a NCI designated Comprehensive Cancer Center. We will be with you for as long as you want us to.
Posted By: ChristineB Re: Newly Diagnosed - 10-18-2012 02:39 PM
Katie, welcome to OCF! This is the best place to come for info and support. So glad you have found this site!

Sorry to hear what you have been thru. Wishing you good news at your appointment today!

Posted By: Cheryld Re: Newly Diagnosed - 10-18-2012 02:53 PM
Hi Katie - your story is the same as mine - right down to the dental implant issue. For a long time I've believed that that was the cause of my scc - Did they do a neck dissection? The speed your tumor grew - tells me it's aggressive.. A neck dissection for this type of tumor - even if there's no lymph node involvement is very common as sometimes nodes don't pop up until later since there may be microscopic cancer that isn't apparent at first.

If they recommend rads and chemo take it.

Best of luck and take care.
Posted By: David2 Re: Newly Diagnosed - 10-19-2012 04:08 PM
Katie, sending all my good vibes your way. We're here to help.
Posted By: Max1987 Re: Newly Diagnosed - 10-19-2012 09:44 PM
Hi Katie,

Sorry to hear that you have it.

I was diagnosed with tongue SCC last month and had my surgery last monday and am recovering now. I am 25 y.o. non-smoker, I don't misuse alcohol and generally eat healthy food... there are people who smoke and drink for 50 years and don't get any oral cancer... you never know..

i think cancer is about our inner state. my last year (or two years) were extremely stressful that i think have resulted in this nasty desease.. we should live in harmony with ourselves and not to worry too much.. then all deseases will pass by
Posted By: ESikon Re: Newly Diagnosed - 10-20-2012 06:48 PM
Welcome Katie!

I was 10 years younger than you at diagnosis with three little ones. Never drank, never smoked, never dipped, HPV-, in fact was under the care of dentist for treatment plan for the past 4 years prior to being diagnosed. I always had some type of dr treating me and yet, it was missed and I was stage 4.

Please keep us informed on how your appt goes, so many wonderful people are on these boards. We'd be glad to help you in any way possible.
Posted By: Katie B Re: Newly Diagnosed - 10-23-2012 12:07 AM
Thanks to you all for responding to my message. I am sorry we are all here but am grateful for the support we can provide each other.

We liked the oncologist who requested we have the hospital's pathology department send my slides to his office for further study. Once he's taken a look at those he'll be able to determine exactly how much more tongue to remove. He suggests doing a selective neck dissection at the same time, which we agree is necessary. We didn't discuss radiation or chemo yet as we won't know what's what until the lymph nodes are checked. More waiting after surgery. Grrrrr....

I have help in researching all that needs to be researched, because all I really feel up to doing these days is that which I can control, which is my normal routine with the kids and my husband. My family and friends have been terrific in keeping calm and being the brains for the research I find overwhelming.

I look forward to reading more of the posts on this site and getting to know some of you better.

As a neighbor said, I am a cancer kickin' warrior! Keep up the fight!
Posted By: Katie B Re: Newly Diagnosed - 10-23-2012 12:14 AM
Hi Max,

I, too, have had a stressful couple of years, and have often wondered if that could have caused this cancer. Then I am reminded of all of the happy, relaxed adults and children who also end up with this disease. I am convinced that there is an unknown viral/environmental component to this sudden increase in oral cancers in the young population.

Whatever the case, it certainly has made me change my priorities and has made me appreciate all which I previously took for granted.

Thanks for sharing and I wish you well.
Posted By: emilyp Re: Newly Diagnosed - 10-23-2012 01:08 AM
i second katie's opinion... prior to my diagnosis i was always pretty relaxed, happy, and at ease. I try to get back to that state now, but it is certainly hard with the constant fear of recurrence. hopefully they will figure it out one day!
Posted By: Cheryld Re: Newly Diagnosed - 10-23-2012 04:15 AM
Hey there the wait post op is necessary regardless of the biopsy results tough it does make you feel in limbo - it takes 5-6 weeks to recover from the surgery though you should feel okay after the first two weeks. Good luck!
Posted By: braziliangirl82 Re: Newly Diagnosed - 10-23-2012 04:24 AM
Wishing you all luck of the world smile
Posted By: Max1987 Re: Newly Diagnosed - 10-25-2012 05:27 PM
Dear Christine,

My apologies for breaking the rules of your forum. Of course, I should have considered that this forum provides thorough background of oral cancer from medical point of view and people look for help here that is scientifically/medically proven and will certainly work for them.

There might be other non-medical methods of treatment but it is not clear how they work and whether they work at all or not.

I am therefore changing the whole post to make sure there is no misleading information.

Regards

Max
Posted By: ChristineB Re: Newly Diagnosed - 10-25-2012 07:58 PM
Katie....First, I apologize for hijacking your thread!!!!! Im very sorry but I am required to moderate the forum and edit things as necessary.

Only thru a biopsy can a cancer determination be made. That is the only way for sure. Several things can look like oral cancer when they are not. If your mother never had a biopsy then it cant be proven that she had SCC or some other ailment. The usual ways someone gets oral cancer is HPV+, smoking/drinking or some have no known cause. Studies have not yet proven any link to hereditary as far as I know.


This site is dedicated to only providing factual medical advice. Surgery and radiation with or without chemo are what works. Any other approaches to curing oral cancer are NOT scientifically proven to be effective.

Max, I have removed your video as it is promoting unsubstantiated claims to curing oral cancer. The other thread with the video has also been deleted. In the future please refrain from posting things like this on the forum. If you would like one of the admin's opinions on something, please send them a PM and not post it on the forum. This is one of the major rules of the forum, not to post any unproven treatments. The internet is full of false claims and cures in which many people trick and deceive others into buying their products. Anyone could stumble across that video and not know the full story thinking OCF supports this since its posted on the forum. This could result in that person not obtaining the correct medical treatment. If someone delays by trying undocumented cures then it could easily become too late for conventional medical procedures to work. Just because something is on the internet doesnt make it true. Our website is bound by the Health on the Net Code which certifies OCF provides correct medical information. This is not up for discussion.

--------------------------

Any replies, please stay on topic which is Katies situation. Thank you!


Posted By: Charm2017 Re: Newly Diagnosed - 10-26-2012 03:20 PM
Katie

Sorry you had to join the cancer club. I just wanted to stress that "stress' does not cause cancer nor does "living in harmony" cause "all diseases to pass by". That assertion is just another aspect of woo woo medicine. Long time readers know just how upset I get when posters link to web site or say this nonsense. (Max is lucky I've been off line for a while and missed his egregious violations as I am not as temperate as Christine when I spell out just how delusional such claims are, especially since he still left that woo woo nonsense in his post after claiming to clean it up)
It is natural for all of us "to often wonder" if stressful years caused our cancer because we are deluged with woo woo in the news, TV and internet. Of course now the marketers have renamed it CAM or Complimentary Alternative Medicine
Since I am so snarky and mean and outright nasty in my denunciations, I find it better to post excerpts from more temperate articles debunking the central dogma of most of the fake CAM or quackademic medicine
[quote]Wishing for healing heals. Alternatively, it can be stated somewhat more accurately as: You attract health to yourself. Note that this is just like The Secret, only for health.;note Secret is FALSE[/quote]
[[quote]Who wouldn�t want to be able to increase his or her chances of surviving by finding a way to overcome depression or negative thoughts.... Unfortunately, the flip side of that �empowerment� is the implication that if you are not doing well or, if you are a cancer patient and are deteriorating, it must be because you don�t have a �positive� enough attitude. Barbara Ehrenreich pointed out the toll this sort of thinking takes on actual cancer patients in her book, Bright Sided: How the Relentless Promotion of Positive Thinking Has Ruined America, even going so far as to entitle a chapter Smile or Die: The Bright Side of Cancer...[/quote]
[quote]In other words, we bring cancer on ourselves by allowing immune systems to acquiesce to stress, tension, and negativity in our lives. Note this is also FALSE
[/quote] This is so wrong and yes, even doctors who should know better promulgate this stuff. Don't be fooled. It is not your fault you have cancer (except at the genetic level). The toxins in our environment have been proven time and time again to be carcinogenic.
The full article from Science Based medicine can be found here, It deals with more than the stress fallacy.
Central dogma of CAM
This is a hard road we are on, and unnecessary guilt will not help you beat it. Like one of the OCF speakers at an OCF walk (go to one, they are great) said: Be the one to put the can in cancer, the rad in radiation and the emo in chemotherapy
Keep the Faith
Charm
Posted By: Max1987 Re: Newly Diagnosed - 10-26-2012 03:50 PM
Hello Charm,

You have mentioned the famous "The Secret".

Have you read/watched it?

What is your opinion? Is it totally woo woo or is there any part of truth?

Sincerely

Max
Posted By: Charm2017 Re: Newly Diagnosed - 10-26-2012 04:13 PM
Max

The fact, not my opinion, is that the Secret is total fraud. My opinion is that onnly a desperate gullible person would believe that a guy who worried about his bike being stolen and then it was, shows the Secret works. Seriously, why not read the whole link to science based medicine article I posted so you can see just how stupid the Secret is
I know you are young and want so hard to believe in magic but it's a muggle world, There are no magic wands.
I've read the Secret and laughed out loud. I watched it and almost cried in thinking that some people believe this stuff.
Of course I did not waste my money on the book or dvd, they were sent to me by well meaning colleagues who I used to think had logical ability. I know better know.
The secret should be infamous, not famous.
It sets the stage for the first wrong and erroneous assumptions of reality so the "logical' conclusions people draw from it are flawed.�
The real secret is that there is a sucker born every minute to buy woo woo like that.
You want real help in recovering from cancer: eat right, exercise, do yoga, get real massages, (not phony reiki).
Don't let these charlatans prey on you.
This book and movie is an insult to each and every cancer patient.
Charm
Posted By: EricS Re: Newly Diagnosed - 10-26-2012 05:04 PM
There's the Charm we know and love smile
Posted By: Max1987 Re: Newly Diagnosed - 10-26-2012 05:21 PM
Dear Charm

Can I ask you what is your profession?

I am just curious what is the background of a person who is so strictly opposing the Secret. Or is it because you are a cancer patient and that's why you disbelieve in all this woo woo and phoney baloney as you said?

All the best,

Max
Posted By: Charm2017 Re: Newly Diagnosed - 10-26-2012 05:41 PM
Max

I am a retired lawyer, who started out in criminal defense but could not stand to get guilty clients set free, then went into medical malpractice where I learned out to read between the lines of bullshit medical studies and fake medical claims. In both of those, I got tired of asking the client's, "how much justice can you afford", so I switched to being a state civil prosecutor protecting those discriminated for jobs on account of their race, sex, handicap, etc. The Department of Justice in DC recruited me to deal with police departments then I was promoted over to Treasury to handle big million dollar cases involving cities not paving streets or providing sewer services or highways on account of discrimination but did not realize that certain politicians g did not really want me to win those cases so the Dept of Treasury dissolved my whole agency for "fiscal reasons".
I then headed up enforcement of the Foreign Assets Control laws against funding terrorists and trained US Custom Agents.
Again, I offended the wrong high ranking people by making a big bank pay a million dollar fine so I was shipped over to the IRS as punishment. Luckily for me, they needed someone to protect them from the vendors of computer equipment and fake technology promises and the high priced outside consultants (very much like the Secret type people peddling woo woo, only with a technological veneer). Suddenly, being a "mad dog" litigator was an asset. I had a lot of fun with some great IT people modernizing the agency so you can e-file with only a PIN instead of having to buy a PKI certificate.
I retired when the cancer hit me with the highest award possible: The Albert Gallatin Award from Treasury.
So, while I am not a medical doctor, I have ripped them to shreds in depositions and know how to spot phony studies.
Plus I got used to being the only one to speak the truth to power and call fools fools.
Now I police the OCF board for woo woo, fake science, fake cures, quackademic medicine in addition to sharing tips and tricks that got me through three rounds of cancer.
I hope you behave yourself here for your own sake
If you persist in trying to spread lies and false hope, I will ask that you be banned from the OCF board.
We don't allow "discussion" of theories that blame the cancer patient for not following fake laws of attraction.
Charm
Posted By: Max1987 Re: Newly Diagnosed - 10-26-2012 06:00 PM
Charm

Thank you for the story from your life.

Of course I respect the rules and the policy of this forum. Although the law of attraction worked for me many times, I am not going to promote it here. It is not about "blame the cancer patient for not following fake laws of attraction" (cited from your last sentence), but it is rather about patient's belief that his/her desease will be cured and the patient will be fit and healthy. Whatever treatment a patient chooses (medical or woo woo - everyone has a right to choose), you will agree that our mind should be set for the bright future and positiveness that this terrible desease will be treated.

In my opinion, human being's thought is the strongest power in the universe. Do you agree?

Max
Posted By: EricS Re: Newly Diagnosed - 10-26-2012 06:59 PM
Gentlemen,

This thread is about Katie, so Max if you wish to continue this discussion with Charm, please do so in a Private Message so as not to detract from the original topic so that "Katie" get's the answers and support she needs.

Thanks for the cooperation here, Charm as always, thank you for everything you do and have done for OCF over the years.
Posted By: ChristineB Re: Newly Diagnosed - 10-26-2012 07:21 PM
Boys!!!! As I mentioned in my post apologizing to Katie about the hijack....this is NOT a discussion.

The offending links have been removed and I do not want to be forced to shut down Katie's thread but I will if this continues. As I mentioned in my previous post, any discussions will be thru PMs and NOT on this thread. It is not fair to someone who comes here for help to be subjected to anything but respect and assistance. When someone asks questions on the forum they should be answered and by leading the conversation in another direction that is called hijacking. I do not want to see this topic taken over to another thread either.

This is the final post about anything other than Katie's questions. Thank you in advance for respecting the rules of the forum and being polite!

Posted By: Max1987 Re: Newly Diagnosed - 10-26-2012 09:52 PM
Katie, apologies for hijacking your thread!

Admins, please delete all our post that are not relevant to Katie's problem. I accept that it's not fair on Katie that we are discussing here totally different things that are not relevant to her problem and admit it as my fault. Sorry.

Charm, if you wish to continue our philosophical discussion then feel free to post via PM. Otherwise we can finish where we are.

Posted By: Katie B Re: Newly Diagnosed - 10-27-2012 12:05 AM
I didn't sign on for a few days and came back to see that this thread has gone way off on a tangent from my original posting. I didn't even see Max's links that have been removed.

I am here to learn more about my condition from those who have had medical treatment. I am newly diagnosed and am still processing the disbelief, anger, frustration, and shock that goes along with a cancer diagnosis. When I questioned whether stress brought this on, it was more of a question to the universe; why is this happening to me? What did I do? Etc.. I know I didn't give myself this awful disease.

I appreciate everyone's willingness to be helpful and answer everyone's questions. I have already learned a lot from this site.

Thank you Christine, Eric and Charm for moderating.
Posted By: zengalib Re: Newly Diagnosed - 10-27-2012 12:12 AM
Katie,
Sometimes there really IS no reason. I never smoked in my life, was a light drinker, and was negative for HPV. I was also very healthy. When I was hospitalized for my surgery they asked me when was the last time I had been hospitalized. I said, "Well, my son is 30 years old..." So, cancer was the first time I had been sick other than routine colds and flu. I go through the same thoughts myself, even now that I am three years out of treatment. My ENT said that it could possibly be some sort of virus, probably one that hadn't even been discovered yet.
Posted By: EricS Re: Newly Diagnosed - 10-27-2012 01:52 AM
Katie,

Thank you for verbalizing that thought by the way, as they are exactly the ones I had shortly after diagnosis. Some of us may never know the "reason" we got this awful disease, like my friend told me "Eric it's like you won the lottery, only not the lottery anyone would want to win.".

As a poker player I guess I look at it as I've been dealt a hand, and it's not the hand I've been dealt that counts, but the way I play that hand. I've always admired those examples in history personally.
Posted By: DeniseL Re: Newly Diagnosed - 10-27-2012 02:05 AM
Hi Katie,
I also am newly diagnosed. I had a sore on the left side of my tongue. Had a biopsy which determined SCC. At that time I was told I was stage 1. I had surgery on the left side of my tongue and neck dissection removing 45 lymph nodes. Cancer was found in 3 lymph nodes and I tested positive for perineurol invasion and lymphatic vascular invasion. I suddenly became stage 4. I begin radiation and chemo on Nov 5. It has been a rough road but doable. It is true you don't know how strong you are until you have to be strong! Hang in there and contact me privately if you want to discuss.
Posted By: lola7172 Re: Newly Diagnosed - 10-27-2012 02:56 AM
Hi Katie
Sorry you have joined our exclusive club! I was 34 when diagnosed and my mom was 33 when diagnosed (in 1985). Neither of us were smokers and only occasional drinkers.
Don't know why it happens. I definitely felt betrayed by my body especially since I did honor and take care of myself.
Good Luck on this journey - this forum is great for information.
Posted By: ChristineB Re: Newly Diagnosed - 10-27-2012 04:25 AM
Katie, glad you are back and posting on your thread. As a new member I didnt want to see anything scare you off as I know this site can be a very important place for support and info for you.

There are quite a few here who are young and have no known cause. There could be a million reasons why this has happened. At this time there is so much that is still to be learned about cancer including causes. Why one seemingly healthy person will get OC while their best friend is a smoker, heavy drinker and also is HPV+ but never gets OC. The whole thing stinks but we have to do what is necessary to kill the cancer and hopefully move on to live a good long healthy life afterwards.

Please feel free to ask any questions and we will try to help you.
Posted By: Charm2017 Re: Newly Diagnosed - 10-27-2012 03:01 PM
Katie

Back to your medical issues. sorry I let myself be taunted into being complicit with that hijack. It won't happen again. Consider asking for a copy of your pathology report. At a minimum, ask your oncologist if the pathology report shows any indication of PNI (perineural invasion/involvement) as that is a bad sign.
As to the selective neck dissection, you could also ask for a PET/CT scan first. While Petscans are very inaccurate for mouth and tongue tumors, they seem to be very accurate for lymph nodes. I have had a selective neck dissection, and my surgeon was very careful not to damage or cut the muscles and nerves in the way, but even moving them out of the way to take out the lymph nodes causes trauma. There are serious consequences of a neck dissection in terms of shoulder movement, and ability to raise your head and your neck skin turning almost fossilized. Lymphoma and swelling are issues also, plus the lymph nodes are not like your appendix, they actual serve an important function in your body.
Worse in my mind is that many many times all of the lymph nodes taken out turn out to be cancer free, and while some posters are all excited about that, it means that this was an unnecessary surgery.
Of course you have to trust your doctor but wouldn't you feel better if your doctor addressed all those concerns with you rather than just doing a neck dissection "just in case".?
I got a lot of flack by refusing a neck dissection for my first cancer, but when I had to have the salvage surgery to take out the tumor after the recurrence, the same nerves and muscles and area had to be traumatized so it made sense to get the neck dissection done. It turns out that not one of my lymph nodes did have cancer which validated my first choice of being cautious.
Oh, and one last piece of advice, since you have not had and may not even need radiation, it's the perfect time to ask for a blood test of your TSH level, the thryoid hormone. Unless you know your exact TSH number now, before radiation or chemo, you may never be able to fully recover since the lab tests for TSH levels are so wide in range that they are meaningless for an individual. The best guidelines suggest doctors do this, but most ignore it. But it's very very important to know since after TX, you will want your TSH level to be the same as before.
Charm
Posted By: Katie B Re: Newly Diagnosed - 11-18-2012 12:44 PM
Hello. I have been absent due to Hurricane Sandy. We didn't lose power but had numerous friends and family who did and our home became a charging/warming station to them. I have to say that it was a welcome distraction from my impending surgery.

On November 12th the oncologist further resected my tongue and performed a selective neck dissection. I was in the hospital for almost a week (home yesterday!). I had the nasal feeding tube and a drain in my neck. I had been warned that the removal of the feeding tube wouldn't hurt. It did! But it was quick and then it was over. I was warned that the drain removal would hurt, but it didn't, only because that portion of my neck has been numb post-surgery. That was a relief because I was dreading the drain removal and even cried like a baby when the doctor came towards me. It was actually kind of funny.

Overall I'm not in a lot of pain. When I do take percocet I tend to feel nauseous. I'm waiting to have an Ensure shake before I take my morning dose. I'm quite swollen on the opposite side of my neck. I've been diligently lubing my incision site with bacitracin. That's it for medications. I go back to the oncologist on Tuesday for a follow-up visit. He'll know the pathology results by then. You know, it's enough to have to go through these surgeries and to look and feel like a freak. Then in a couple of days I find out if the cancer spread to my lymph nodes and I learn if I can breathe a sigh of relief or if radiation is on the horizon for Christmas time.

I'm really not one to complain and say why me but please allow me to indulge in a moment of self pity. I know you all can understand. I don't know even know what to say. I just want to feel normal again. I want to not look like Jaba the Hut. Wah!

OK. That's enough of my whining.
Posted By: davidcpa Re: Newly Diagnosed - 11-18-2012 02:17 PM
Whine away, it's acceptable and even encouraged!
Posted By: Pandora99 Re: Newly Diagnosed - 11-18-2012 06:27 PM
Actually Katie, I don't consider your very tempered "worries" whining - if you want real WHINING you need to go back to some of my posts!! It is so very natural to be feeling gut clenching anxious and fearful. Who wouldn't be? Keep as busy as possible, do whatever you can to distract yourself - a rented movie is 2 hours that you hopefully are free from worry - take them, and remember - we are always here for you - whatever happens, we walk this path WITH you.

Donna
Posted By: tina77 Re: Newly Diagnosed - 11-18-2012 08:19 PM
Katie,

I am one with the "whining". I felt the same way. Lost half my tongue, looked like the Bride of Frankenstein for Halloween without needing a costume, sounded like the Godfather with new fillings (now like Elmer Fudd with a lisp), numb neck, numb ears, limited range of motion in my neck and shoulders....

I thought, holy shit, and the surgery was the easy part????

But I'm here. And my speech is getting better, even if slower than molasses in January. And I can lift my arms up almost straight. And I can shoulder check when I drive. And, most important, I'm here, and my family is so grateful that I am.

So, punch the punching bag in the basement (or get one of those plastic stand up guys to punch - it's very cathartic), and cry in the shower. Then dust yourself, take a deep breath, and know you can do it.

Besides, you made it through a hurricaine...cancer is a walk in the park.
Posted By: Cheryld Re: Newly Diagnosed - 11-18-2012 11:07 PM
So glad you got rough it. We all have those moments. Hopefully this is it for you! And you don't have to have rads. smile hugs!
Posted By: Katie B Re: Newly Diagnosed - 11-21-2012 12:21 PM
Yuck, yuck, yuck and all of that. Now I'm stage IVa. Out of 22 lymph nodes, 3 of them have the bleeping cancer. They range in size from 0.3 to 2.4 cm.

The oncologist referred me to a radiation oncologist who is the head of the department at Morristown, the Carol G. Simon Cancer. Anyone out there had any experience with either Dr. Erik Cohen or Dr. Wong (radiation oncologist)?

Dr. Cohen recommends in 4-6 weeks localized radiation every day for 6 weeks. He said he'd recommend radiating the tongue and the neck. My mother and aunt are wondering why he wants to radiate the tongue since he took an additional 3 cm out and my margins are definitely clear.

Now is the time for me to get my 2nd opinion. I'm going to see someone in Memorial Sloan Kettering in Basking Ridge, NJ. Am I doing the right thing?

This wasn't a shock to me. Everyone and their mother has been calling me all day into the night. I wasn't shocked. I knew it had spread. I would have been shocked if I were in the clear.

It's so comforting to see that so many of you in stage IV are alive and kicking. That is my plan.
Posted By: davidcpa Re: Newly Diagnosed - 11-21-2012 01:14 PM
Sorry you are faced with these decisions but don't ever second guess getting another opinion from a CCC.
Posted By: Cheryld Re: Newly Diagnosed - 11-21-2012 03:33 PM
Sloan is a top notch facility... definitely a good idea for a second opinion. Get copies of all your records and head there if you can. Also they radiate the tongue despite good margins because cancer is cellular. All it takes is one bad cell. Also when they are cutting they are working off of ct scans generally, so they are hoping they got it all - generally margins confirm this, but cancer can move. so they will cook your tongue and nodes. Tell them to hurry.. 4 weeks is better than 6 if there is residual cancer you want it taken care of now... particularly with nodes involved. I was very lucky as my first ENT sent int he referral to a Radiation oncologist, so I actually had an appointment with him the same day I met my new ENT (Surgical Oncologist) he told me to call him once the surgery was over and I was out of the hospital. I did this and saw him again the same day I had my follow up appointment with Surgical oncologist) both had talked both recommended radiation and chemo (despite saying they thought it a gray area, and were on the fence initially) So my surgical oncologist said it would likely be a 6 week wait for radiation, but the meeting I had with the radiation dr had me set up for my lessons, and fitting within a week and within two I had started. SO almost 4 weeks to the day of surgery.. I had started.

Time is always of the essence.

best of luck.
you'll get through it.
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