Hi, I am Becky from Oklahoma. I am new to the forum and new to the subject of oral cancer. I just discovered the news this week. I went to the doctor for a painful mouth sore that had been continuing to spread over the past two months. I never dreamed of it being cancer, I could kick myself for not going to the doctor sooner. But, at least the catscan and neck xray show that it hasn't spread past my mouth or glands.
I put my description of my diagnosis below as others suggested but I'm not sure if it is exactly correct - just going by memory. I am at Stage 2 at this time.
I am very scared,but I have a positive attitude. Fortunately,I have a very supportive family and many people praying for me.
The fear of the unknown is the worst I suppose.
God Bless Everyone, I am looking forward to chatting with you and reading more of your posts.

What is CO2 Laser Tx and why are you getting a Neck Dissection with no positive nodes? I mean are they doing both sides of your neck? And if not, how did they pick one side over the other?

Where are you being seen?

I personally did not and would not let anyone cut my neck(s) open without at least another opinion. In fact, I would get another opinion from a Comprehensive Cancer Center anyway.

Hi David,
I am probably not describing it correctly. They are only doing one side of my neck. I am being seen by and ear nose and throat specialist in OK. He will be doing the procedure at SE Medical Center.
The left side of my tongue has blisters and white patches on it, my gums on the left side of my mouth feel inflamed and I have a very deep ulcer under my tongue on the floor of the left side of my mouth. My biopsies all came back positive. I was able to eat soft food before the biopsy but now my tongue is so numb and/or swollen that all I can eat is Ensure, broth or cream soups because I can't chew and it is difficult to swallow.
My doctor welcomed me to have other opinions. His personal options were 1. To do nothing 2.To do a complete jaw removal with chemo and rad.(Radical Surgery) or 3. To attempt to remove the cancer with a CO2 Laser and remove the glands on the left side of my neck in order to make sure it doesn't spread.

Becky

Becky,

Have you had a PET/CT scan or just a CT scan?

David is right, you should definitely get a second opinion from a Cancer Center where you'll have a whole team of doctors to evaluate you and come up with a treatment plan.

- Margaret

Becky,

Just reading that option #1 was "DO NOTHING" is enough for me to say that you MUST get another opinion. You seem to be with the wrong doctor.

Jerry

What extremes of options. From DO NOTHING to COMPLETE JAW REMOVAL WITH CHEMO & RAD. Unbelievable !!!!!!
Please follow the advise given here and get other opinions.
Gabriele

Becky, the single most important thing you can do is to get your case seen at a comprehensive cancer center (CCC).

They see hundreds of cancer cases every year, not a handful like a single Doc might see in his/her practice. They also bring a multitude of cancer professions to the table to look at your case -- All of these people are keeping up with the latest and best in treatments, and you don't get stuck with one person's possibly erroneous opinions. They may approve your Doc's approach or may suggest something different based on their expertise.

Here's a list from this site of CCC's:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

When I had my recent bout with oral cancer, had there not been a good free-flap CCC here in Washington, I'd have gone to M D Anderson in Houston. People travel from several states away to come here to Washington.

Don't be afraid of annoying your Doc by getting a second opinion; a good Doc will respect you for it and encourage you to do it and who cares about how a less-than-good Doc feels?

Becky,

As I said in my PM to you earlier, please get another opinion from an ENT in a cancer care center. If I had done that, mine never would have gotten as far as it did. How yours is now is how mine was 3 years ago. And if properly treated then, it would have ended there, maybe even for good. Maybe not, but the chances are..... I'm really glad to see everyone else here is telling you the same thing. Must be a sign, right?

Lani

Hi all,
Thank you for your responses. I agree that I probably do need a second opinion, but I am afraid that if I wait the cancer will spread.
What if I ask for the laser for the cancer and ask to wait on removal of glands? He said the reason he wanted to remove the glands was for the precaution of spreading.
Jerry, I notice you had 30 nodes removed, did the doctor do this when he/she did the SCC? What exactly is the SCC? Was laser offered to you instead of the glossectomy?
Sorry to sound so ignorant, but this is all new to me.
Thanks you
Love, Becky

Becky,

You are not ignorant. This is all new to you and you need to be educated. It appears that your doctor has not taken the time to explain your situation to you in a manner that you can understand. This is another reason to get a second opinion by a specialist, hopefully at a comprehensive cancer center (CCC)

I assume that the glands that you refer to are lymph nodes. They are not removed "to make sure that the cancer doesn't spread". They are removed to make sure that the cancer hasn't spread to them. It is not a preventive treatment. I'm not sure if your misunderstanding of the lymph node removal is on your part of the doctor's, but this again, is another reason for another opinion.

To answer your questions, I had the partial glossectomy (part of tongue removed) at the same time as the lymph node removal. SCC is squamous cell carcinoma, which is the most common cancer of the oral cavity. Laser removal was not an option given to me.


Waiting is certainly not a good thing, but entering into treatment with someone that appears to not be the right person, is much worse. Don't ask for partial treatment. Get on the phone after checking out the link above given to you by Pete. You may he to travel, but it is well worth it.

Good luck.

Jerry

Becky,
Since there are no NCI supported Cancer Centers in Oklahoma you might want to look for an nearby Comprehensive Community Cancer Center (or hospital cancer program)accredited by the American College of Surgeons Commission on Cancer (CoC).

Both NCI supported centers and CoC accredited centers will stricly follow NCCN diagnosis and treatment guidelines, but CoC centers are not necessarily associated with Universities or Research Institutes. Most cancer is treated at a CoC.

Please check the American Cancer Society's Cancer Treatment center locater site at:
http://www.cancer.org/docroot/FTC/ftc_0.asp?sitearea=ETO

It will help you locate nearby CoC and/or NCI accredited and supported treatment centers.

Hi Becky,

I would like to reiterate exactly what everyone else has suggested that you get another opionion at a Cancer Centre and also if you can take someone with you to attend appointments.

During the appointments two heads are better than one because it can be really difficult to take in everything that they are saying to you but with another pair of ears it makes it just that little bit easier to remember things and also having someone else with you can help you to ask questions that you may not even think of. Taking notes is also a good idea.

Karen

Becky,

This is your life. You need to take control and make sure you are as comfortable as you can be with your treatment. I know this is all Greek to you now but you need to get comfortable with your options. Having an unnecessary neck dissection is plain foolish and life altering. Not having the correct treatment for your oral cancer is plain foolish and life threatening. Please stop and get another opinion or 2 (I got 5) before you do something that you may regret for the rest of your life. I decided to go with Moffitt, a CCC, because they treat 100's of cases just like me a year as opposed to my ENT who said he treats maybe 5 people like me a year. NO BRAINER in the "who do I want to place my trust in" category.

Please don't blindly place your life in the hands of the first doctor you see even if he is a specialist; even if he is well respected; even if he is this or that. Would you buy the first house you see? Would you even buy the first car you see?

Becky --

I agree with David (and everyone else). My husband's cancer was not identified until the excisional biopsy that, fortunately, removed it all. Because his first pathology report showed dysplasia, and not cancer, a local ENT did the excisional biopsy. But as soon as that biopsy report came back showing cancer, he was seen by an ENT at a comprehensive cancer center an hour or so away, where ALL they see is oral cancer. Had further treatment been required, he would have gone there instead of a closer local facility.

The ENT who did the biopsy is an excellent doctor and was well trained (chief ENT resident at the Mayo Clinic, etc.). But as a general ENT, he also puts in ear tubes, repairs deviated septums and such. His focus is not oral cancer.

Especially given the wide variation of treatments your doctor has presented, it's in your best interest to be seen at a cancer center where a team of doctors from a variety of specialties (surgery/radiation/chemo/etc.) will come up with a personalized and coordinated treatment plan. You want doctors who deal with oral cancer every day. Most cancer centers react quickly when a second opinion is requested -- just be sure you have copies of your reports from your current doctor, the lab reports and slides from your biopsy.

And keep coming back -- this is a great place for information and comfort.

Becky,

I know this is hard and you would like it taken care of in a neat and convenient package...close to home, doctor you know, etc. I know you are reeling from the news and feel like you are being bombarded with information you don't feel competent to absorb or make sense of. We all know the feeling of facing that mountain unprepared for what lies ahead.

But start with one phone call to that CCC. Make that appointment and then get the necessary information that Leslie mentioned above - scans, biopsy slides, reports together. You can do this and most CCC's have personnel (new patient advocates) that will walk you thru the process. You will be so glad to have the experts at these centers look at you and discuss your case at a team meeting and give you a treatment plan that gives you the best chance for beating your cancer.

Do come back and ask questions...we all want you to have the best chance!

Deb

Hello Becky, can't say enough about all the great advise these people are giving you. I am fairly new to this too and this site can give you a wealth of knowledge through each stage of your treatment.

Initially my wife was scheduled for surgery the week following her first consultation but that changed when they performed a CT scan and found the tumor was larger than they thought. After her surgery two weeks later (yes the waiting was hard), the surgeon stated that he was glad they did not proceed with the first scheduled surgery as they would not have had a surgeon scheduled to do a tongue reconstruction (forearm free flap) which was necessary due to the tumor size. I think a second opinion would be great but at least get a CT scan to make sure they know what they are looking at before starting surgery.

Unfortunately you have had a bombshell dropped on you but on at least you have found a good resource when questions arise.

My current surgeon at U of Wash CCC, who did my free flap procedure referred to lymph nodes as "repositories for cancer cells"...

Hi All,
It's me again. Today my husband and I visited the CCC that my doctor referred me to. We did not hear the news we were hoping for. After a long visit with the oncology/radiology doctor, she scheduled me for a Pet Scan next Monday and a follow up for the results the following Thursday. From there, she wants send me to see an oral surgeon to see if I would have to pull my teeth. She also gave me options of having a Chemo IV patch while my gums are heeling and wants to put in a peg before following up with more chemo and radiation.
I am so scared,I can't believe this is my life. I graduated from college at age 40 in May of 07 with a Bachelors Degree in Special Education. I taught in Hawaii last year and I moved back home this summer where I landed a job in my home town. My husband and I married May 23, 2008 after being together for 18 years. I moved back home, rented a house, taught 3 days and BOOM!! found out I didn't have a canker sore, I had cancer!

I agree with all of you that said get more opinions!! There are a accredited centers not too far away from me, I want to get opinions from at least two of them before going past the Pet Scan on Monday.
Thank you for all of your advice, I will be looking forward to much more... Thank you for being here!!
Much love to you, Becky

Becky, I wish you all the luck in the world. Luckily it appears you have found this early. I also just had another pet scan and found additional problems while I have been waiting to get dental work done, staging, etc. This is a disease I have learned must be planned out and things don't necessarily get done as quick as I would like for them to. I am unable to get to a CCC but I do have some wonderful Dr's here. Many of them. ha ha You will get the best of care at a CCC. Best of Luck, Angel

Becky:

Sorry to hear of your misfortune. Sounds like your life had been going so wonderful and now this happened. You will overcome this, its not easy, but it can be done. Then you can move on and enjoy everything life has to offer again.

Hi Becky,

Glad to hear you are seeking other opinions and thinking about your treatment options. Find the treatment plan that makes sense for you. This disease and it's treatment plan have a lot in common with an IEP...it should be based on a current full individualized evaluation, be devised by a variety of professionals based on your individual needs and not a generic approach and be updated frequently. Hang in there, I'm rooting for you!

Susan

Are your teeth bad to begin with or have you always maintained good oral hygiene practices? There is no reason to extract otherwise good teeth even if you get concurrent chemo and radiation.

You have a rather small local tumor with no apparent mets to your nodes. You have already had some kind of a surgery that may have removed the Primary. You are young and you haven't mention a tobacco history. Unless I missed it you didn't really say what part of the tongue was involved, like the base of tongue. Has anyone mentioned what they suspect caused your cancer, like tobacco or HPV?

You say you went to a CCC, which one?

Listen I'm not a doctor of any kind, just a vet who has also read 1000's of posts since I finished my Tx. I also got 5 different opinions from "qualified" professionals and believe me I'm glad I did because if I had gone with the first 2 I would be dead today. If I had gone with the 3rd and 4th I would have had unnecessary surgery with lifetime adverse side effects. Even going with the 5th opinion by a CCC I still had to stay on top of my Tx and I questioned things often.

My point is I wouldn't feel comfortable with what you have been told so far and I would RUN to another CCC, one that sees hundreds and hundreds of patients just like you a year.

Hi Becky,

Ok,lets take a long cleansing deep breath here.(inhale...exhale) Now that some of that pent up anxiety has been exhaled (if not take another) lets talk.
After reading all the previous posts I find myself feeling all wound up inside and bombarded with information. My thraot tightened up and I got this feeling of extreme urgency. So I can only imagine how you feel after reading all these posts. I know none of us want to add to your anxiety over this. So lets take a step back, take another long relaxing breath and approach this in a more methodical manner.
First let me say everyone is right. You need to have all your options layed out to you and you should always consult with more then one physcian who specialies in oral & facial cancer. Preferably ENT oncologists associated with a cancer center. You have begun that.
You need to have a through pre-treatment evaluation which may include but is not limited to, biopsies, MRI's CT scans and most importantly a PET scan. this also you have begun.
I know from "our" recent experience it is also important to see a dentist and/or oral surgeon before tx to evaluate the health of your teeth and gums. This dosen't mean you will need to have any extractions but from our experience and how it was explained to us. It's importatant to have your teeth cleaned. any minor cavities filled and if there are any teeth that may need more major dental work ie...root canal, that they maybe should be removed to prevent any nessecity of major dental work after tx. The reasoning behind this is, that after tx the jaw bone and facial bones are weakened and are much more brittle after tx and if by chance a tooth needs to be extracted later after tx it could compromise these bones. This does not mean that if your oral surgeon recommends any extractions that you have to do it. It's only a preventive option that only you with information in hand will decide on when/if this is recommended.
Before tx our oncologist sent us to the dentist and I'm glad for it! The dentist recommended 3 molars removed. Two were crowns and one had a large cavity. We went ahead and opted to go ahead with all 3 extractions. We didn't have to. The oral surgeon made it quite clear it was our decision. We could have gone with just the one and left the crowns. Or none at all. Anyway we decided. The best part of visiting the dentist before tx was she gave us all sorts of good products for my husband to use duing treatment to help promote good health in his mouth during tx. Fluoride, special tooth paste, an extra soft tooth brush and special mouth wash to name a few. She also gave him a detailed outline of when and how often to use them. She cleaned his teeth and made an appt to see him again after tx for a follow-up. All I can say is, it was a good experience and we went into tx feeling his mouth was in the best health possible for the days to come.
I believe ( my opinoin only I am not a Dr.) your new RO is making a good recommendation about the chemo IV patch and most importantly the PEG. Since you are already having trouble eating and good nutrition is so important thru all this I would seroiusly consider taking her adivice on the PEG.
I understand your concern about all the time it takes getting all this done before deciding on a tx plan and getting started. From the time my Husband had his 3rd surgery and the start of tx it was exactly 2 months. We fretted every minute that the cancer was coming back and spreading every minute we waited. But I really do feel it was good we did all the right steps first so that now he is getting the best poss. tx so he can have the best recovery and be cancer free once and for all.
One question, may I suggest after all the tests have been done may be...
Will I need surgery? before? after? treatment.
( my husbands surgery came first and his tx is hopefully a preventive to keep it away once and for all and hopefully should not need anymore surgery)(Some folks have surgery after. The tx is used to keep it from spreading and to shrink the area before surgery is done)Both ways work. I can't say one is better then the other Just depends on the individuals circumstances. And many folks have no surgery at all.
May I also suggest you not get too obsessed over percentages and odds vs recurrance and the like. I can honestly say they will just drive you crazy with worry. Every individual case is unique and altho they give you an idea on how a certain course of treatment may have worked in the past (on average) for a certain test group. It does not dictate or predict what your outcome and possibilty of recurrance will be.
I firmly believe with all my heart that your ability to face this with determination and grit is the most important factor. Keeping a stiff upper lip and keeping your outlook in the most positive manner you can muster from day to day is the key. We are all here to help you do that. Please don't hesitate to lean on the folks here. They are an amazing group of people and I feel so fortunate to have found them. As for me? I'm here for you if you need anything. Even if it's just to vent. whine, grumble or rant uncontrolably. It has only been a few month's since we stood were you stand and I understand the frustartinon and fear that you have at this moment.
Now let me tell ya something good personally after being where you are and now standing where we are. Life is good! WoooHooo...Today is my Husbands 22nd radiation treatment and time has flown by so much faster then we thought it would. We have had good days and bad days but it has not been near as scarey as we imagined. After today we will have only 15 radiation treatments to go!!! ~happy, happy dance~. And it's a beautiful fall day outside, the sun is shining and I'm so happy he is sitting here beside me drinking his power shake and watching CSI repeats. ~big grin~ We still have a difficult road ahead.(most likely the most difficult) but we're prepared to face it one day at a time. And we will get thru it. Just as you will too!

Please let me know how your appt goes on Thursday. Hang in there. Sincerly, ~Ija~

Hi Becky,

I am new to this also and very scared. Take Ija's message to heart. Step back, breath, and revel in the fact that so many strangers are now caring and informed friends, not too far down the road that we all are traveling to look back, reach out a helping hand, and pull us forward. I wish I could give you concrete advice (I too am in the infancy stage of the learning curve), but I know the members here are very proactive and have the best interests of us all in their hearts.

My best and good thoughts always!
Catherine

Hi I agree with Cathrine and Ija what wonderful words. I too am fairly new to this journey and have grown somewhat I have had my surgery but it was the waiting and the OMG how much is this going to grow before I am treated. The waiting was brutal. I got the same advice from the caring people here just breathe and take things one day at a time. As it turned out I have a wonderful team working on me and during surgery they removed all of the tumor and my nodes were clear. Again the waiting time to find answers out drove me crazy again the advise to keep busy and breathe ...All I can say as the experience on this site is valuable and with baby steps and experienced team you will come through to the otherside ready to experience more life

Hi Ija,
My eyes are still welling with tears from your wonderful advice. I was feeling very down until I read your post. I don't know what to expect. You must be a very special person. It took me two days to tell my mom I had to have radiation and chemo, and maybe all of my teeth pulled... That is my worst fear. I can handle the treatments but having my teeth pulled scares me to death. I had braces for 5 yrs, 4 crowns, and 2 root canals. I have taken very good care of my teeth all of my life. I turned 42 on September 1. I have had 6 months check ups every year!!
Thank you again for your precious words, you made me feel so much better! love, Becky

Hi Becky,

Yeah this disease and its treatments are brutal and we all hate it, it turns our worlds upside down, it is horrid.

It took me nearly 4 days after I was diagnosed to go and tell my parents, knowing how upset and fearful for my wellbeing and future they would be. I still cry when I think of that day.

When the first surgeon said to me that I would have to have nearly all of my bottom teeth removed I nearly screamed, actually I probably did. My visits to the dentist were 6 monthly since I can remember and my teeth were healthy and perfect, everyone used to comment on them. But unfortunately they had to go so my jaw could be fixed, otherwise the bottom of my face would have dropped because my jaw was collapsing from the bone damage and that would have been a catasrophe, worse than not having teeth temporarily, that is for sure.

But, very soon I will be in the process of getting 'fitted out' for new bottom teeth implants.

It certainly is not easy to deal with, but if you have to you can because it is only going to be for a short time NOT permanent.

Thinking of you from across the globe

Karen

Becky:

Its very unsettling to be advised to do anything drastic like removing teeth. It is something that can be a necessity at times for this awful disease.

I only had 2 teeth pulled before tx, the rest were considered good enough to make it thru rad. I now suffer from very limited mouth opening and need alot of dental work done. At this point, cant do anything til my mouth can open wider than the size of a straw. Ive searched from doctor/specialist to doctor/specialist in all fields for help. There is nothing that can be done for me except continued physical therapy and HBO. Im not much older than you so I do understand how terrible this can be.

A second opinion is a good idea, but please consider what I have written. If your teeth are considered questionable, then think about this carefully. I suffer every day and can barely eat. If I could have seen the future, I would have told them take all my teeth while they could get in there.

Best of luck to you.

Becky

Speaking from the other side...I had all my teeth removed long time prior to getting OC. I tried to take good care of them but my gums were in bad shape and to save them would have meant a lot of dental work that I was just not up to. As it turns out having them out already apparently made the surgery easier and saved my jaw bone not sure how but that is what the doctor said. Although I believe that OC started up with an irritation from my dentures and because I smoked well the math was just there.

I just wanted you to know that if you can possibly keep them go for it but it really isn't that bad on the other side...

Anyway off topic I know you have taken great care of your teeth but there are worse things than having them out and they can do some really miraculous things with false teeth these days

Mine were all taken too for the rads, chemo and rad seed implants in my tongue but I sure miss biting into food. Even a piece of bacon would be great. LOL with or without egg. I hope one day my Oncolgist says, Jim it's time to go for dentures. It's been 10 months already and I invent a lot of ways to eat certain foods and how to make them soft enough to just gum. My day will come and we'll eat a big steak. Bythe way, What is a "Steak" ? I hope I at least gave you a chuckle and let you know you aren't alone. Jim

Becky,

OC is not all that common of a cancer and there is a good deal of variation in OC.

Most NCI designated CCC's cancer centers don't really see that many new cases a year. Only a handful diagnose over 200 cases a year and most less that half that.

Up until recently the best RT machines (IGRT/IMRT) could only treat about 70 patients a year (on a single shift basis) and for OC I would want a really good machine with an excellently programmed treatment plan.

So I encourage you to get other opinions and eventually work with a treatment team that routinely handles OC cases or at least is very well affiliated with a center that does.

These days, pulling all the teeth should not be done unless the teeth are real bad or the location and invasiveness of the cancer requires it.

In my case the CCC's dental center just snap a panoramic xray. A DDS of Prosthodontics reviewed it and did an oral exam. He told me my teeth were fine. They then cast the molds for my fluoride trays. Likewise, I have a few crowns, root canals and fillings.

Becky, you mention SE Medical Center, so probably the closest accredited CCC to you is Baylor in Dallas. It is a designated NCI cancer center of excellent repute and handles over fifty new OC cases a year. I strongly advise you to consider getting a second opinion from Baylor and ask their opinion about local care and treatment back in Oklahoma (Durant Oklahoma?).

Just the opinion of a Ole Texas Aggie

M.D. Anderson in Houston is world class, and it's where I would go if I lived within 5,000 miles! (well, THAT would be a problem, but I would get there if at all possible.) They are experienced with oral cancer surgeries, and they work with more local hospitals, "cookbooking" treatments to be carried out closer to home if a patient can't come back to Houston often, or can't stay for treatment. I did not have my surgery there, but if I need more (Please not!) there is no question that I would go there. In this part of the world, MDA is the place to go. I never hear of Baylor in Dallas for cancer treatment, though I know that it is an excellent institution overall...but probably not a CCC. If you have any way at all, make an appointment at MDAnderson. Use the internet: www.mdanderson.org and make a self-referral on the internet. Describe your diagnosis and treatment so far, and they will call you back within 24 hours to make you an appointment with the appropriate department and physician. Dr. Randall Weber is the chairman of Head and Neck, and I had an appointment with him for a second opinion after my surgery, and he is kind and very, very thorough. You can read all about him and the other physicians and the department online.

MDA is arguably the finest CCC in the world. But if the distance is a deterrent Baylor has two fine CCC's and a third under construction.

Baylor University Medical Center
Baylor Sammons Cancer Center (CoC accredited CCC)
3500 Gaston Avenue
Dallas, TX 75246
Phone: 214-820-3535
www.bhcs.com


Baylor College of Medicine
The Dan L. Duncan Cancer Center (newly NCI designated CCC)
One Baylor Plaza
Suite 450A
Houston, TX 77030
Telephone: 713-798-1354
www.bcm.edu/cancercenter

I'm getting on the bandwagon with August. MDAnderson is a world class facility and their head and neck department is staffed with an excellent team of clinicians. I had the good fortune to have Dr. Weber as my team leader and was more than impressed with his compassion, thoroughness and cutting edge treatment (shouldn't all surgeons be cutting edge? LOL.) Living in the suburbs right outside of Houston, there was not a moment's hesistancy to head to MDACC for treatment. If you can get there, it's worth the trip.

Susan

Becky,

I have to say I hate dentists to begin with and just the thought of having one if not more teeth pulled would scare me too! Just know whatever is decided it will be for the best and is one step closer to having a long, healthy life in the future. Every tooth lost will be one less problem to deal with later down the road.
It took only two days for you to tell your Mom? That's good actually. We Didn't tell hubby's Mom till after he started tx. And we didn't tell her about his surgery till after he healed and was feeling good enough to talk to her. Not saying it was the right thing to do. But it's hard to talk about and so hard when you know your adding some real worry to the minds of people that love you. Now I know we should have told her sooner. She has been such a great resource (retired oncology nurse) and so helpful with the little things that we can do that we never would have thought of otherwise. We were afraid to tell her since she knows prabably better then anyone else what his dx meant. She just lost her husband last year to a long illness and we just didn't know how to break this to her. Our concern for how she'd take it was unwarrented. Even though she's older and we think of her as fraile she has rallied and been a real comfort to us.
Try to stay distracted as much as possible right now. And above all. Take to doing and eating everything that makes you happy right now! That way when you're at that point that your drinking the same old boring starwberry shake (or equivilent) you can imagine that awesome steak dinner you enjoyed just a few weeks ago. And when having one of those days that your feeling completly worn out and rundown you can think about that bazaar you went to or movie you saw or that wonderful day in the park you had just weeks ago. And remember no matter how long it feels, it is just a few weeks out of your life!!! and it will be over and you'll be feeling better and better each new day until it is all just a bad memory.
~hugs~ Ija

Hi All,
Sorry it has been so long since I posted. There have been many changes since I posted as you can see by my signature. I am a patient at Cancer Treatment Centers of America in Chicago. I feel confident that I chose the right place for me. The doctors and staff are always on their toes, they are not only good but they are very compassionate.
There is a CTCA in Tulsa not too far away from where we live in OK,but because my insurance is Blue Cross Blue Shield we had to come to Chicago. Which is okay, they flew us here and they pay half of our hotel fee. It costs $40 a day but all meals and tranportation are free.
I had a port put in the day before Thanksgiving and it is doing fine. I will be having a peg tube put in next Monday. I was hoping to avoid this but according to the doctors I won't regret it. My mouth is already too sore to eat. I have just been drinking nutrition drinks and soups. Above all I want to keep my energy and defense system up.I just hope it doensn't make me stay stiff and sore. If you have or have had one, I would love any tips or advice on what or what not to do when I get one and how long I will stay sore.

I hope everyone is enjoying their holidays. Best wishes to all and my prayers go out to you and your loved ones.
Merry Christmas!
Love, Becky

Becky I had to have al of my teeth removed. I was going to get radiation seed implants put into my tongue after i had radiation and chemo.. THis after surgery at Ohio State James CCC. Sometimes it's a necessity and has to be done to prevent infection. I had 3 infections and they aren't pleasant. I miss the my teeth and stll can.t eat beacuse my mouth still hurts from the implants. I can't even get a date or near date when I will be able to get dentures. THe worse part of my journey was the implants and I would not wish them on anyone. hey had to be agressive with the cancer and went for it. good luck.

Becky from one who learned the hard way,, Go see and get more opinions, I had to go thru 2 or 3 wars so far from OC and if I would have listened to the 1st Dr I woukld have gotten rads and chemo and maybe still have my teeth and a tonuge that feels like something fighting me but my friend. Listen to the people in here. Some are very knowledgeable. Good luck with what they do and I hope the OC is gone forever when you finish your procedures.

Becky,

Please continue daily swallowing so as not to develop post Tx swallowing problems that can last a lifetime.

I personally think that the Port is a great idea and one that should be standard practice.

You need to consume as much as 3000 cals a day and 48 ozs of water daily. Make that a goal each and every day and only use the Peg as an emergency backup plan when you just can't meet those goals.

David,, you missed the carnation VHC plug. LOL They are gonna replace you...Humm I need money, I wonder if maybe ....LOL Don, I can guarantee you Ohio State James CCC sees one heck of a lot more than any 70.. There were that many in the cancer unit of the Hospital with OC that they had surgery for.Me included and JeffL Probably too.

Jim,

I'll pay you triple what they pay me if you want to take over the horn tooting position and you can keep anything they pay you.

But the only reason I didn't mention the VHC is because she said she will be getting the Peg today and I've heard others say it's to thick to use with the Peg. I'll have plenty of time to educate her after Tx ends.

Hi to all, My husband has been waiting for his surgery and now it is almost here.. It will be at the Mass Eye and Ear in Boston on Friday. We know the tongue and jaw are involved but we do not know how radical the surgery will be. We have dealt with the swallowing issues since his first bout 6 years ago and he did OK, slow but sure. My big question going into this is what is speech like after the surgery? He will not have radiation because he had the max with the first bout. I would love to hear how folks did post op and how long it was before he can expect to be back on his feet. The doctor only tells us about what the worst case scenero might be, I want to hear some good stuff. Thanks Elem

Hi there- You can PM me if you'd like for more answers. I had a full glossectomy 2 years ago. My speech isn't great but its intelligable and I wear a prothesis to help with certain sounds like L and G . Its a long recovery process and everyone has different levels of success eatinga nd speaking depending on how the surgery and recovery goes.
FEel free to contactme if you have more questions.

You might want to start another thread in the forums so more people can answer your specific question.

K