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