For the past 3 months I had a minor sore throat on the right side. Finally saw ENT on 04/13/2010. Biopsy last week. Diagnosis is Right T1 N2 Sepraslottic (sp) Seca. Apparently on the lip of my voice box. They are going to treat with radiation. (I haven't been set up with a team yet) I feel like some of the posts I have read - like I'm going to have a nervous breakdown. My stomach is staying in knots. I already was taking a small dosage of Prozac - but I feel like I'm going to jump out of my skin. I'm (or was) very healthy (1/2 pack smoker & social drinker) and don't feel sick. And I keep thinking "this can't be happening". I'm so glad I found this forum. I am so scared.

Sandy,

Sorry to hear about the diagnosis. Your reaction is very normal. I called it the "fight or flight" feeling and my gut was telling me to run away and I had nowhere to run to.

So now you are left with the fight side. You have to make that transition and know you have a good chance of beating this thing.

T1 is good (small), how did they diagnose the N2. Did you get a PET scan, an MRI or a CT scan? or did your doctor just feel the nodes in your neck?

You are now officialy allowed to up the Prozac dosage. My GP cut me a Zantec prescription just after I was diagnosed.

Hi Kelly,
Thanks for responding. I had a CT scan before the biopsy which showed the node. There was no node until 2 weeks ago. I laid down on the bed to watch TV and noticed that my neck was tender. A little egg had popped out. Not tender now, bu the lump is still there. Can anyone give me advice on it?
Thanks
Sandy

Sandy,

I see you're locate in FL. I'm in Fort Myers 2 hours south of Tampa well worth the trip to Moffitt. I was treated at Moffitt Cancer Center in Tampa that would be my first choice. Excellent Dr.'s great staff and they know what they're doing.

Yes get to Moffitt ASAP. If you need help getting seen let me know. I take patients there all the time. I'm like their "Preferred Customer". lol I will even go with you to your first appt if you want.

It's extremely important to get your diagnosis correct before a treatment plan can be draw up.

David, I think it's wonderful how you help people out. I wish I had known this forum and you at the beginning 1 year and 5 months ago.

Take him up on it Sandy if you aren't already at Moffitt.

Sandy, Take david up on his offer. it is always nice to have someone by your side at appointments especially that first one.
As another poster said you are in fight or flight mode. It is time to fight. As hard it may be, you will come out stronger, I believe, on the end of things. I know I am a stronger person and now know what others have gone through and have helped other people here in OK.

David - Wow!! I'm awed by your offer to help. I live in Cocoa Beach and work in Orlando. My research did show that Moffitt was one of the top cancer centers in the US. But I didn't think about it because of the logistics. I have to admit I'm not that knocked out with the ENT group I was referred to. The network is Florida Hospital.
What are the steps that I take to get into Moffitt. I swear, I feel like I;ve steppped into a parallel world and I'm trying to navigate with a blind fold on.
Thank you all for your help and concern.
Sandy

Hey Sandy, I too was DX with vocal cord cancer on 3-4-10. I never felt bad just hoarse. I have just completed RT with IMRT for 39 treatments. No PEG. I never lost weight and continued to eat although very carefully. Wanted you to know that it is possible to get through this . I actually only this past week began to have some difficulty eating and swallowing. RO says I have peaked on my side effects now and I should start improving soon. I have gotten a bit tired on occasion, sleep a bit more but overall compared to most that post here, I have gotten through this relatively unscathed. I smoked 2 packs a day for 40+ years, threw them down "cold turkey" the morning I first saw my ENT. I have 3 children that are nurses and 3 doctors in my family. They all told me to eat as much as possible and get as many calories down as I could for as long as I could. I managed to gain about 7 pounds through treatment and will now at some point have to lose that and a few more. I am convinced that being able to continue to eat helped me get through this. I sometimes had to chew things a very long time and take very small bites , but it was worth it. Good luck to you. This is a great site for support.

PS. I too was encouraged to go to a BIG Cancer Center like MD Anderson. After seeing a local MO, my RO and getting 2nd and 3rd opinions from Vanderbilt and UAB, I elected to do my radiation locally b/c they have the latest IMRT and that was all I needed. No Chemo or surgery. If I had staged higher than T1, I probably would have gone somewhere else especially if I had needed surgery, chemo or any lymph involvement. I have already said if it comes back. I am jumping a plane if I require anything extensive. I have been told that b/c I quit the smokes, I have a very high probability of beating this for good. It sounds like you caught yours very early also which is a real biggy.

Sandy,

The logistics go right out the window when patients are not getting the best treatment available. There are a hundred horror stories right here on this site about miss-diagnoses, bad treatment, wrong treatment, not enough treatment, too much treatment......

I drove an hour each way to my cancer center. I got two second opinions from CCC's at Penn and U of Michigan. I almost moved to Ann Arbor to be treated at U of M but they said I would get the same treatment at the facility an hour from my house.

You definitely want the folks at Moffit to look at you. They may recommend a place closer to you to get your treatment or you may elect to go with them, but either way you will know you have been seen by the best. If you ever have a doubt about a local treatment you will be able to check back in with the best.

Keep in mind that the core intense treatment for this disease should only last about two months. After that there is a good deal of follow-up but not an intense schedule.

This is what I was prepared for, taking two months out of my life to save my life.

Don't know how to jump in but i am doing so.
You can see from my signature a brief synopsis of my plight.
I've already been through hell with my ovarian cancer (beaten all the odds) and then when I found out that the maintenance drug (99.999% sure) i was on on may be the cause for the H&N ca you can imagine how devastated i was.
Once diagnosed there was a 3 week wait for surgery when one of the tumors tripled+ in size changing surgical plans the morning of. A flap was needed. Great - all the margins were clean just do a little radiation to be certain. Surgeons were confounded because i healed so fast - i was home in a week's time.
However I overexpress epidermal growth factor receptor (EGFR) so the radiation did not work. Now I am starting chemo (taxol & erbitux) and radiation all over again. My mouth has only partially healed from the previous 24 treatments.
I would take a recurrence of ovarian cancer any day - this is hard to look at, hard to speak with, hard to eat with as you all know. I'd rather not see it nor feel it. One tumor started oozing this morning.

Sandy,

Call me Monday after say 8 am at 727-322-5669.

Sandy, I can imagine how scared you are. There's nothing quite like the feeling of being told you have cancer and I surely wish you'd never had to hear those words. But since you have, please take a deep breath. You're among friends here and you're getting the best advice. And David's offer to help you is amazing. Talk about above and beyond!

You'll get the help you need, you'll have the treatment... it'll be tough, no question... but before too long you'll be coming through the other end and beginning the process of putting it all behind you.

Please keep us informed and ask all the questions you can think of here, no matter how strange or insignificant or stupid they may seem.

Courage!
David 2

You guys are amazing. David I will call you on Monday.

Just a side note. My doctor had prescribed xanax when I was first suspected of cancer. I don't usually take this, but since I have been so wound up - tried it today when I didn't have to work. Well, it did calm me down, made me sleepy enough for a short nap and afterwards had a sense of well being. I can't tell you how good that felt. Please keep the good vibes coming.
Sandy

Alison,

Sorry to hear your latest news. You have come to the right place to get the advice only us patients can give regarding oral cancer. The radiation is a bitch as you well know and almost all here have had strong doses to the oral cavity so we have some good tips on how to get through the eating, drinking pain stuff.

You should start your own thread by clicking on the "New Topic" tab at the top of either Introduce Yourself or Currently in treatmentforums.

I am relatively new here at 9 months. We have some old hands here that can help you get through the tough parts. We have a forum for reoccurance also.

Kelly -
You really put it in perspective! Great thought. I'm going to attach it to my wall.
Thanks -
Marlene

"This is what I was prepared for, taking two months out of my life to save my life."

Hi all,

My first post was on 05/21/2010. I met David today on the phone. He has arranged for me to meet with a top radiation oncologist (sp, I'm sure that I will eventually get it right) at Moffitt this Friday for a 2nd opinion. I hope I don't embarrass him, but I am so amazed that someone I don't even know would do that for me. (And from what I understand, for many others). I am so grateful that I found this board.
Best Regards,
Sandy

Sandy, Sorry to have you join our group. I am so comforted to know how David has taken you "under his wing" May his kindness bring you comfort & calmness. I was spared surgery because of my 2nd opinion! I wish you all the best. You can do this, the strength will come to you to persevere and be grateful for all the medical advancements available to you. You have a new family with us all here, so please keep us posted of your progress.

Sandy,

We met on May 21, your first post and believe me you won't embarrass me. Hard to mess up being a cancer patient. lol

David is hard to embarass. LOL He is one great guy and makes a good friend too. I hope to one day meet David and many others here. They keep me straight aftewr wll the treatments I have been thru. They keep a smile on my face. Good luck with ther treatments. I have been from the NMountains of W Va to the flats of Ohio State plus 4 more for treatments and have never had a bad Dr. Well one that maybe thought I was kind of old. LOL

I'm going to Moffitt tomorrow for a 2nd opinion. David is meeting me. Oh, the questions I have!! I will keep all of you posted on what is going on. And maybe as I go further and get more knowledgable, I can mentor someone new myself. I saw my dentist today for my mouth survey - to see if good for radiation. TG - it was good. He said this is just a hiccup in life. So true.
Talk to all of you soon.
Sandy

Hi Sandy - my oral surgeon said the exact same thing and here I am 7.5 years later - no recurrences and healthy! Congrats and keep us posted.

Good description! Good luck to you and hope you sail through treatments and get better soon.

Sandy,

"You are in good hands with David".

He is one of the most compassionate people I have ever met and he will help to get you through this.

You did spell oncologist right. And we don't care how you spell anyway. You've probably read some of EzJim's posts. We do make fun of him, though.

BTW, I've tried to embarras David and it never works.

Good luck today.

Hi all,

Well, I met with David and Dr Trotti on Friday. It was alot for me to absorb. Apparently, the cancer has an 85% cure rate, but because of the location, the residuals could be bad. Example - difficulty swallowing and possible loss of voice box if the radiation isn't done exactly right. I really wanted to have this done close to home. But after much discussion with David and my husband, we have made the decision to go to Moffitt and Dr Trotti to have the treatment done. As David says, "it's only 7 weeks". (Why does that seem like a lifetime) I will keep all of you posted.
Take Care,
Sandy

Sandy - doesn't it make you feel comforted to hear those big percentages on "elmination" rates of this type of cancer. I'm so happy for you that you're comfortable with a plan of attack and that you're going to be able to get this ball rolling. I'm going to put David in my mental rolodex if and when I ever again need an authority on getting the correct information and strategy - I think someone said that next year at this time you'll be mentoring other new patients on the course of treatment and coming out the other side stronger.... keep all of us in the loop and let us know about your progress - 7 weeks - less than 2 months and you'll be treated by one of the best - how can you lose = 49 days of your life? - I would SO BE THERE! lol - Now you can finally exhale!! YOU take care

Hi Sandy, as your see I have been through the system of radiation and chemo at the same time and come out the other side, recently.

Let me tell you, the worst that you can go through and you can come through it, even though you may feel at your worst some times.

The funny thing is, as your see if you read my story, I was not to worried until I started the radiation and then the chemo, at the same time.

First horrible thing was, I had no appetite, so did not was to eat or drink for 3 weeks, so I lost 27kg, 2nd was all the flem that I was spitting up, pots of it. 3rd nasty thing, was the sickness I had to endure 24 hours after taking the chemo, that really drains you, if your not having chemo, you will not be so affected, you may feel sick and have the flem, but the worst is the sickness. I had 8 weeks of nastiness and the after effects are no taste buds, everything you eat taste a combination of iron filings and parrots droppings, and your apatite is nil.

So you basically goe through 2 months of uncomfortable feelings, then you slowly get better and now I have my taste back 90% and my weight back, better than before, everyone says I look fabulous lol so your get through it, just hang on, its going to be a roller coaster ride, at the time your feel bad, but remember! your be fine after, just tighten your seat belt, as my Doctor said we are going to hopefully cure you, so just don�t worry to much, with the new treatment now your live through it?

Sandy Sandy Sandy,


I am so relieved that you and Dan made that decision.

Now get with Karen ASAP and see if they can get you in Wed and get the ball rolling. Also start the ball rolling with the Hope Lodge as I'm sure there's some RED tape involved.

Sandy, sounds as if you're in the best of hands and have made the wise decision. We're all here for you.

David: to say you do the name proud is an understatement. It brings tears to my eyes.

D2

Sandy, I have a feeling over and over you will be happy that you both decided to have the treatment at such a good place.
What happened over the course of my husband's treatment(and I know this wasn't unique)were there things that happened we didn't expect(like him needing to go to the Er for a fever)and questions about what was "normal"(if anything is normal in this situation) and it helped so much to have a bright,compassionate team of doctors helping to guide us.

David, Wow. Really.

David 2,

I know none of us can say enough about DavidCPA. He moved it through for me and I have appointment for mask (and whatever else tomorrow) when Dr Trotti is there. He will be gone on Thursday, but that is the day for my Pet scan (is it PT or Pet?). Anyway, the ball is rolling.
Take care all,
Sandy

Sandy's tumor is in a unique location in her vocal cords area that Dr T was concerned not about killing it but the lifetime adverse side effects including loosing it all together. He is one of the, if not the only RO in the State of Florida, that has the equipment to do a PET with the mask on to get the best possible mapping prior to beginning radiation. He is confident that with this added diagnostic tool he can really mitigate those side effects. That's why I was pushing Sandy to give up those 7 weeks in exchange for a better, perhaps way better, chance that she can come through with minimal side effects.

I also now get that new car from Moffitt... Just kidding Sandy!

David.

I had IGRT, which as you know is Image Guided Radiation Therapy. The image in this case is an X-ray that is taken as each session starts to assure absolute accuracy.

Is Moffitt using a PET scan as the IG part of their procedure, or do they just have a PET that can see through the mask as a separate function and then follow on with the multiple IGRT sessions?

Davidcpa, I think it's wonderful what you have done for Sandy and her family. You're one in a million...

Sandy you're in my thoughts and prayers your in good hands at Moffitt.

I had the mask done today. By, is my face cute in that mask Just kidding. (Not really) I'm ready to do. Pet Scan tomorrow. Total treatment start on June 21.
Take care all,
Sandy

Sandy had her PET with mask on yesterday at Moffitt. I guess by now I'm not her favorite person anymore! lol She starts concurrent chemo (3 bags of Cis) and radiation (7 weeks) June 21.

Not bad, look what this site did for her. Her first post was May 21 and she was being seen by an ENT who was planning only radiation and now only 30 days later she will be treated at the best CCC in the State of Florida by a multidisciplinary team. I wonder how many other cancer help sites can make that claim?

David - it's all you, man!