My name is Katy, I will be 28 years old in April. I am married to Terry, 35, and have two daughters who are 4 and 1, Ryleigh and Raegan.

I am not sure where to start, but I was diagnosed with cancer October 30, 2013. About 4 years ago I noticed a small spot on the under side of my tongue. It never hurt or was uncomfortable. About 8 to 10 months ago I noticed the once small spot was a red, irritated section from front to back on the right side of my tongue. I saw my PCP and was given Kenalog paste, an oral steroid to treat the place. I also took Acyclovir 800 mg 5 times a day for 10 days. The place shrunk, but within three weeks I had a large tumor on the right side of my tongue. I was referred to an ENT.

At the ENT we did a biopsy of the tumor and found out it was cancerous.Squamous cell carcinoma Stage 2. Surgery for a right partial glossectomy and a right neck dissection to remove all lymph nodes was scheduled for November 7th. Surgery went great, negative margins all around, the lymph nodes were all cancer free. My speech was nearly normal, I could eat most everything,things were going great. I followed up December 12th to find that I did have a small place, but it did not hurt and was likely scar tissue.

I was scheduled to start back to work January 7th. About 1.5 weeks prior I noticed a place in the back right of my tongue. It was very swollen and hard, the same pain I felt with the first tumor. I let it go for a week thinking it was irritation from a cold I had. After about two weeks there was still no change. I had been back to work about 2 weeks at this point. I decided to take a day off and go back to the doctor early.

Friday, January 17 2014, the doctor felt my tongue and was convinced that we had another cancerous tumor. He wasted no time setting me up with a surgery appt for Thursday the 23rd (last week). We also consulted with a Radiation Oncologist who decided I will undergo 6 weeks of radiation this time. The tumor was much larger this time and did cross the midline. He had to remove the right side and then hollow out the inside of my tongue as well.

I go back to the radiation oncologist on Feb 13 to start treatment, get a CT scan, make my mask, etc. I went for post surgery follow up today and there is a place in the back left side of my tongue that is hard and causing the same pain. We are unsure if this is a tumor again, or possibly trauma from the surgery less than a week ago.

I am scared, hopeful, nervous, anxious, terrified, angry, confused, just so many different emotions all at once. I am sorry that we have to meet in these conditions, but glad that I have a place to come and talk to others who have been through this. I apologize for the novel and if some things do not make sense. This is obviously just bits and pieces of my story. I look forward to knowing you all better through this journey.

Hey there and welcome, I had a similar cancer though I'm a little older. My problem had been long term (by this I mean long term irritation and a few biopsies before being diagnosed) - the one thing I'm gathering from all this is that your cancer sounds very aggressive, which tends to be the case with younger people who get it. Hopefully you are being treated at a CCC. Your dr. Sounds very on the ball. radiation is not fun - read up on it and prepare for what you are facing hopefully you will not have a horrible time of it, but to be honest even people who do okay with it still have a hard time - compared to a lot of the horror stories I had heard prior to treatment - I think I did okay - and believe me when I say it was bad. not trying to scare you - just inform you.
Forewarned is forearmed. You should eat now - enjoy your foods - bulk up a little if you can food loses its appeal around week three and stays unappetizing for quite some time after (particularly if you are receiving the bulk of radiation to your tongue.)

On an up note you are young so hopefully this will help you heal quickly - if you have people offering to help get their names - you may need a little help with the kids. Towards the end you will likely have low energy and feel pretty crappy. Rads is cumulative so the first few weeks following treatment are often the worst.

If you have any questions or concerns we're here.

If they are talking chemo as well - then cisplatin is likely a reasonable choice - this requires a hearing test and you should also see a dental oncologist prior to beginning radiation and bad teeth will have to come out and you should have flouride trays made.

Best of luck - sorry you have to be here, but welcome,

Hi Katy - welcome to the family. It's a big one, many thousand strong and here to help you along your journey. We really do know what you are facing; we've all been there.

Don't apologize for anything, ever. Battle with the C is a big thing, it may be one of the defining chapters in your life. Notice I said MAY. I just finished treatment one month ago and in all honesty for me it wasn't a big deal, and that's because I had very few side effects from radiation (no chemo). It's easy to stay positive when you don't hurt. On the other hand, some of our members had a lot of side effects and a lot of pain; their journey was kinda miserable, but still very much doable. Where will you fit in this spectrum, who knows, everyone is different. Right now, just adopt a wait and see attitude. It will be what it will be, and worrying about it won't help or change anything.

All the emotions you've felt so far are completely normal. I faced them too, we all did. Having said that, one of the biggest hurdles you will face is the one you put inside your own head, specifically worry and what it can lead to; depression. Some of our members fight a real battle with it and it only makes the battle harder and more miserable. You have to learn to NOT let worry ruin your life over the next two months as you go through treatment. You have to put it down, to cast it away.

How do you do that? You stay busy with all the other parts of your life. You don't spend the unused minutes of your day thinking about your disease. You look for enjoyable things to spend those precious few minutes on, a good book, holding and playing with your children or talking with your husband or your parents, or your friends (and NOT about cancer). You watch a good movie, or go for a walk and feel the sunshine on your face. You bake a good dessert, and then eat it. You look for and then do the pleasant things of life.

Yes, you spend some time here on the forum as you have a steep learning curve to climb. But, you don't let what has happened to others affect you. You don't know that the same will happen to you. You may be lucky and get through this without a lot of side effects.

In my signature are three posts that describe in detail my journey. Your journey may be similar, or it may be vastly different. Whatever happens we will be here to help you along the way. All you have to do is just tell us about it.

good luck, you will do just fine

Tony

I think the pain element also has a lot to do with where the radiation is being aimed. Everyone is different. We all have different pain tolerances and such. I think what really helped me get through it was planning ahead. And knowing what I could expect. I have a very high pain tolerance - as such didn't need to use the peg they installed. Drinking that boost or ensure was hard there for a few weeks. I mean I literally had to take a deep breath and CHUG. With like one breath at the halfway mark. But I also was able to drive myself to treatment daily, and fared okay with chemo.

Plan for the worst hope for the best. And stay positive.
hugs

Katy: I ditto the welcome to the family. You sound like a very strong person and I'm sure you're going to get through this. As you've likely been told and have read via the veteran posters above me, radiation treatment isn't easy. But it's very doable and with a good attitude and help from friends and family you'll make it through to the other end.

Like Cheryl I drove myself to treatment, and that was in Los Angeles, where most drivers treat cars as weapons of mass destruction. If you can get a ride - both for the ease as well as the company - I'd recommend it. At least after the first week or two.

We all react differently to treatment and I hope you'll be one of those for whom it's easier. Hang in there, ask all the questions you can think of both of your medical team and here on the forum (we will never treat any question as anything less than meaningful) and do get in all the nutrition you can now. Most of us will also recommend that you get your thyroid levels checked too, as radiation can mess with that small but essential organ. But if it does, treatment is a snap with medication.

My best wishes and good thoughts. You can do this!

Hi Katy! Welcome to OCF! You are in the right place to get correct medical info and support to get you thru this next part of your Big C battle.

Its not going to be easy especially with having 2 little ones at home. But you will get thru it and move on with a renewed zest for whats most important in life.

Best thing you can do is begin to write down names and contact info for everyone who offers their assistance. Tell them when the time comes where you need help you will let them know what they can do. It can be something small like making a homemade meal for your family, doing a load of laundry, helping you to straighten up the house or grocery shopping for you, even taking the little ones for the afternoon or overnight helps. Those things add up to mean alot when you arent feeling well.

You will need to prioritize and focus on your intake. Every single day you will need to take in a minimum of 2500-3000 calories and 48-80 oz of water. Those numbers sound high but they are the MINIMUMS you need to get thru this. the more you take in and drink water the better. If you are able to eat now I would recommend eating all your favorites prior to beginning treatments. Dont worry about putting on a couple pounds, that is a good thing right now. Your sense of taste and swallowing will change during treatments, its temporary but it can be a real struggle for a while. So, eat now!

We will be here to help you with questions and to give you pep talks when you feel low. Its ok to lean on us, we really do understand. We have been where you are and will help you get thru it too.

Welcome Katy,

You have found an excellent place to get first hand information and tips on getting through the entire cancer experience. Make sure you pin this site, visit often, research a lot, be proactive and stay ahead of what the plan.

You are young which is great in terms of having a strong body to recover well and also have fewer conditions that constrain the treatment options.

Having very young kids has much greater impact on your treatment experience. Obviously, as a mother you are going to worry endlessly about their well being and care while you go through treatments. Beside your husband, reach out now and build a support network as fast as you can. Just the daily routine of the radiation treatments becomes a daily grind. With the kids so young, you need to have someone care for your kids for at least that portion of the day.

The range of side effects from radiation is great and there really are no reliable criteria to establish beforehand how you will fare. That said, plan for the worst, hope for the best. Again, this means having a solid support system in place to help with the kids. Hopefully, you will be fine and skirt most side effects as some. But you may increasingly suffer side effects that limit your own capabilities.

Eating and drinking fluids are going to be issues. You will lose weight since you can not eat easily and do not want to eat easily. Who wants to cook for the kids and family when you feel like crap. Start thinking about where you can get support at meal times too. Depending on your husband's availability he may be able to be the full time caretaker. Still, there will be times he needs to take care of other things too.

You did not make mention of medical oncology for any chemo treatment. If you are being advised only to get radiation I would strongly seek second opinions and recommendations about hitting the cancer hard this time. Most receive a combination of chemo and radiation treatment. You can read up the standard of care for your case as published by the NCCI.

Second opinions in general are recommended. At the very minimum you want your case presented at tumor board where many other doctors can review and weigh in on your specific case. That team offers their perspective and recommendation and options. Having a different team review and recommend gives you a better understanding of your case and the amount of variability of opinion there may be. Usually recommendations are consistent but you would feel better and sleep better knowing your treatment plan has been endorsed by a broader community of experts.

You did not mention HPV status. Clearly, it is become evident that oral cancers with HPV+ markers have great prognosis. Please fill out the signature line so we can help you better with those facts.

One last thought - my own view on fighting cancer. KILL it with all you got. I understand recommended therapies consider age of patient and long term side effects so that probably factored into the decision to do only surgery last time. This time due to recurrence you have to go full guns and ask for aggressive treatment. Certainly, you do not want lingering side effects but that only matters if they KILL the cancer. Chemo does kill the small cells that are not visible. Ask if that is an option and if not why. Seek that second opinion. You want to all out this time. Again, my personal view.

With some planning and smart moves, you will do fine.

Best to you,
Don

Hi there Katy, and welcome. You are doing a great job following through on your health. That vigilance will see you through. And you're right, it is a journey -- the lowest points are only temporary and will pass. Some things will change, but the sweetest things in life will still be there for you, and in some ways, on some days, sweeter than ever.

I'll add two suggestions to all the great advice already coming your way. First, ask a friend or neighbor to organize a meal chain for at least several nights a week starting your 3rd week of rads and lasting at least two weeks post-rads. It will take tremendous pressure off your husband and you'll know that he and the girls are eating healthily. Ask the organizer to invite friends, family, neighbors, daycare families, church family, and co-workers to sign up through a site such as TakeThemAMeal.com. It was a lifesaver for us, and people were so glad to have a way to help.

Second, I hit a few stretches where I couldn't talk. My 9-year-old daughter was beside herself. I had made a short recording for her before treatment, and wished I had made more. Consider recording yourself singing a favorite song, or reading a favorite book. They can sit on your lap and listen when your voice and energy ebb.

You have been through so much in such a short time, it would set anyone reeling. For me, the lull before treatment was the hardest part -- the unknowns were so frightening. The good news is that just 3 months from now you'll already be done with treatment, and almost certainly through the worst of any side effects.

Hugs,

Lynn

Thank you all so much for your replies. I greatly appreciate the insight. I am beyond the point of being able to eat. I had my second surgery on January 23rd. I am unable to swallow my own saliva, so I am only able to drink water and Boost or Ensure. I had gained some weight prior to surgery, but I have lost it all and another pound already.

I had G2 Squamous Cell Carcinoma, HPV Negative. I am concerned about the place in the back left, since I have an aggressive cancer I am afraid it is also a cancerous tumor. This has been such an insane journey. I never imagined I would deal with any of this, but definitely not that it would be such a fiasco to get rid of the cancer.

I will be seeking a second opinion through Vanderbilt University Medical Center here in Nashville. I am currently being seen by a ENt/Surgical Oncologist, I have a Radiation Oncologist, I am being overseen by a Dentist as well who has already repaired some of my teeth. I am having my fluoride trays made on Tuesday. I see my Surgical Oncologist again on Wednesday. I really need to know if this other place is a tumor and what the treatment options are. He says surgery, of course, but I do not want more of my tongue removed if I do not have to.

I would like to have chemo and radiation if it will have the same end result. I have not asked about chemo until this last appt when we noticed the threat of a possible third tumor. He is discussing things with the Radiation Oncologist and by Wednesday we should have some additional testing done, I believe. In the meantime I will contact Vanderbilt and see if I can get an appointment there to discuss my case with another team of physicians.

My Radiation Oncologist is definitely going to keep up with my health through blood tests and will make sure my thyroid is okay. I am afraid that my body will not take well to radiation because I am sensitive to most things. I hope I do not need a feeding tube, I am going to keep fighting to drink my nutrition. I have definitely not been hitting enough calories this week, but I am only 5 days post right partial glossectomy.

If I missed anything, I apologize. I will go back through and read again. Please if you have any advice for any guidance, I will listen. I need insight as I am nervous and scared. I trust I am in good hands, but if my case rings any bells, I would love to hear your experience.

Thank you all for the warm welcome. I will be visiting quite a bit. I will be sure to post questions and anything else in the appropriate place. I need to learn how to do the signature and research the abbreviations. I am still trying to figure those out.

For instance, what is a CCC? I am very new to this.

Comprehensive Cancer Center..... (CCC) A CCC is one of the countrys top cancer hospitals. They use a team based approach where all the specialists get together to discuss every individual case and make a treatment plan. Its been scientifically proven patients have the best results when treated at CCC's. Vanderbilt is a CCC and from what Ive heard one of the best places to get treated. Of course you will want to be comfortable with whatever your choice is. Find the very best medical care you can and put your trust in them weather its at a CCC or another facility.

Please take a few minutes to review the private message (PM) I sent you. A list of common abbreviations is included in the link. A signature would also be very helpful. Detailed instructions are also in the PMs link.

Katy:
A CCC is a comprehensive cancer center; there are only about 20 of them in all the U.S. I don't know if Nashville has one, but Christine is very good about posting the link that shows where all of them are. Their main advantage is they are truly the forefront of treatment knowledge about cancer; it's where you will get the best care as all their doctors are the best in the business.

Edit: When I started writing this post, Christine hadn't already answered this question. Sorry for the duplication.

To make a signature click on My Stuff above your first post and select Edit Profile, go down to Signature and then start typing. Read some of our signatures first so you will have an idea of what you want to say in yours. I have changed my signature about once a month as I went through treatment.

Right now I would post all my questions in this one thread; don't go bouncing all over the forum asking questions in multiple places. If you put everything here we all get to know you better and faster and can respond with the most appropriate information. A good time to leave this Introduce Yourself forum is when you start rads and or chemo, then start a thread in the Currently in Treatment forum. Look in my signature and see how I did it. Mine is not the only way of course.

I understand you think you want rads and chemo right now, as from what you've read that sounds like the correct way to go. If your care team uses a tumor board approach, then they form a panel usually consisting of surgeon, ENT, radiation oncologist, medical oncologist (chemo) and anybody else they think is needed. They all get together, discuss the particulars of your case and decide on a course of treatment. I don't know what they will decide, but if they decide it's rads only, don't get all upset and start second guessing them. Instead, trust your doctors, they know a LOT more than we do. They know what is best for your particular diagnosis. Many of our members have pretty strong opinions about what they think is the correct treatment for a given diagnosis. It happened to me, many on the forum thought I should also be getting chemo, but my tumor panel said rads only. In the end I had to just decide if I trusted my doctors ... I did.

Now, as for your nutrition. If you are a slender, tiny little thing and have already started losing weight then this is going to be tough on you. I was a plump little dumpling before rads began, so I had lots of extra I could afford to lose. The general rule is if you lose 10% of your body weight, then they will be wanting you to go on a PEG feeding tube. None of us want them (and I didn't need one), but getting malnourished because you are not eating enough and losing too much weight WILL put you in the hospital, and that's far worse than the feeding tube. I know the mouth/throat hurt, but you need to be eating like a horse right now. It WILL get worse during treatment. I reached 10% weight loss on my last day of treatment, that's the only thing that kept me off the tube. I lost some more weight during first 2 weeks post treatment, but now the weight has started returning.

When you have more questions, write. Otherwise, go eat something, preferably something with lots of calories, and fat and protein. Right now is not the time to be trying to eat that healthy, low fat diet.

Tony

Hi Katy-Welcome to the Forum, and I hope it is helpful for you!

Your case sounds a bit like my husband's. He is 31 and healthy other than the C and had a spot on his tongue for nearly a year. After wondering about it, he went to the ENT for a biopsy. He learned it was SCC right before Thanksgiving 2013. He had a right partial glossectomy in December and just started Rad and cisplatin this week. So we are about 3 or 4 weeks ahead of you with those, if you have any questions.

We will get through this all together--it does feel comforting to read the forum and hear from all the patients themselves. As opposed to just talking to the doctors and googling things...

Please don't hesitate to ask anything here, you are among friends.

I have finished my signature, please tell me if I need to change anything. I looked at abbreviations. I had a hard time figuring out how to abbrev signature. So much information.

I am currently being treated for SCC Stage 2, and I have and RO and Surg Oncologist (ENT).

Tony, I have some weight to lose, about 70 lbs actually. I am unable to eat, I have had two surgeries already removing portions of my tongue. I am only able to swallow water and Boost or Ensure as of right now. I am not even swallowing my own saliva properly right now.

I plan on visiting VUMC for a second opinion and as I understand they are a CCC. My current team is only the RO and SO. I trust him with my care and he has mentioned a MO for possible chemo, depending on what the thing in the Left back of my tongue is. He said surgery is preferred first method of tx but that chemo and radiation can sometimes take care of it as well. So that is what I am hoping for If this place is another tumor.

After one tumor with negative margins and a recurrence only 2 months later, I am a bit skeptical. We did get negative margins this time also, only 1mm on one side and at least 3mm on the other sides. He is certain this place in the back left was not there when he performed surgery and I do not remember it being there either. There is a possibility it is trauma, has anyone had trauma like this post partial glossectomy? The other fear of course is tumor.

Your signature is great! Thanks for adding it. A signature greatly helps us to help you.

As far as weight loss goes, this is NOT the time to lose it. Doctors will prefer the patient doesnt lose anything at all. Most of us have lost considerable amounts of weight. When you see weight loss like that it comes with muscle loss, malnutrition and dehydration. These things can add up to be very serious. I am still very weak 7 years after going thru my first round of OC. I lost not just weight, I lost muscle tone as well. Even though you arent eating, you can ensure your formula is enough to meet the daily minimums.

Of course it could be trauma. You never know what it is until a biopsy report comes back. Best wishes with your biopsy and second opinion.

I definitely am not trying to lose weight. Hoping I can keep up my nutrition and maintain until after treatment. I lost 30 lbs after my first surgery. I think we will be doing a ct. If we biopsy it will be a surgical biopsy so in that case he prefers to go ahead and take the spot out. I'm not sure what else can be done though. I'm anxious about the place and would like some answers asap. This has been tough for me.

I also choked on my oral pain meds tonight. I spent about thirty minutes trying to catch my breath and stop coughing up mucous and blowing my nose. It thickened the oral mucosa after I choked to the point I couldn't stop choking on my own saliva. It was traumatic. I'm nervous to try to swallow my meds again. I have drank water to thin everything out. I'm finally settled, but my tongue is very sore and my throat hurts from coughing so much.

Your signature does look great. You have already become more proficient at using abbreviations than I ever got. Realize there is a 500 character limit to your signature, so as you add more stuff you will either have to abbreviate more, or delete stuff.

I wish I had advice for you about your throat pain and getting/keeping the meds down. Since your surgery was just a week ago I'm hoping by weekend's end you will start to see some relief via normal healing. I know the one week to 10 day point after my surgery was when the pain and other symptoms were at their worst.

I know you are not trying to lose weight, but I think your last comment about scared Christine to death.

As for quick answers, none of us get them as quickly as we want. If you're like me you want those answers yesterday. But a week from now will be more like the norm. So, find yourself something to occupy your mind while you wait. In the Friends forum there is a thread listing all the good movies our members recommend as well as a list of good videos and music available free on Youtube.

Hang in there, it's always darkest just before the dawn.

Tony

Thank you, Tony. Absolutely I want answers yesterday. It will maker us crazy. I'm occupying my time pretty well, but too much time to think is not good right now. My throat is actually feeling fine. My tongue is extremely painful. He took quite a bit this time and the positioning of the cuts is not allowing me to swallow. My tongue isn't functioning properly. I'm drooling a lot and anytime I swallow it gets stuck in the roof of my mouth or on the back left of my tongue. Then I'm unable to push it back. Hope that makes sense.

I do get choked on water and the nutrition drinks at times too. I'm just glad I'm able to swallow at all. I'm hoping I keep this ability through radiation. And maybe my tongue will heal enough by then so I can eat soft foods at least. Thank you so much again, Tony.

All this stuff is like a two edge sword. We want our radiation/chemo to start ASAP, but the docs need to give us a little time for surgery to heal. My wait from surgery to rads was 6 weeks for a tonsilectomy. I thought that was an eternity as my mouth/throat felt fine 2 weeks post surgery, so I was climbing the walls for 4 weeks waiting.

That's when you need lots of positive things to keep your mind occupied, the good books to read, the good movies to watch, the friends to have that extra long cup of coffee with (hot drinks did and still do make my throat feel better, and they help get rid of the rope mucous, a new friend you probably haven't met yet).

That time is also a good time to get on the website and start educating yourself about oral cancer. The forum does a great job of keeping you in contact with people of similar ilk, but the website is where the really good technical and medical information lives, things that you will want to know.

It may be a little early to tell you this, but for others it won't be. Sooner or later you will put all this together in your mind and realize that lots of people who have gone before you stuck around after their treatment was over so they could help the newbies just now joining the family. They didn't have to stick around, they chose too.

Others helped me, so I stay to help others, kind of the pay it forward concept from that old movie. When I was diagnosed all I wanted to know about was tonsil cancer and it's treatment and survivability etc. etc. But now trying to help others I need to learn about all the other forms of oral cancer. It's easy to greet new members and give them that initial warm fuzzy and we're all here to help you feeling, the thing we need the most at the beginning. It's much harder to answer their questions about a diagnosis different from your own.

Sorry for being so wordy. You may be the stick around after type, and maybe not. Regardless of which you choose the website has information that will help you ... and it will do a good job of filling the time between surgery and treatment.

Just don't let it depress you. Keep it at arms length.

Tony

Katy,

I am going to have to be the guy that says get the PEG. No if/ands/buts about it. If you are getting your whole tongue, including BoT radiated. I highly doubt you will be able to get the food to your stomach.

I am over one week post Tx and I can't even attempt to eat orally yet. There were points in my treatment where my tongue was swollen and had multiple open sores(due to the radiation scattering on dental work), any liquid beyond BMX was extremely painful to put in my mouth.

Now, swallows of water alone are painful but doable. I can still take oral meds after I BMX. But you can only use that 3x a day.

I hate my PEG and the smell of the formula more than anything, but I respect what they have done for me.

I still have lost 10% of my weight with the PEG. I'd have certainly been in the hospital without it.

Vanderbilt is the place to be. My is the head of the ENT department and he is who did my sister's surgery in November.

They can prescribe most medicine in liquid form.

Katy, forgive me for being intrusive but I am going to add my voice to BrianPK's and urge you to get a PEG. I am worried about you. Things are about to get a lot harder, and choking and nausea can't be overcome with any measure of willpower.

Extra weight does not protect you from a potentially fatal nutritional crisis.

I had plenty to lose but a week AFTER treatment, I was hospitalized for 8 nights with complications secondary to malnutrition. I had been unable to keep food down for 32 days and was in serious condition. They tried an NG tube, but within hours I vomited so violently that I discharged the tube. They installed a PEG as an emergency procedure, but I couldn't even keep PEG feedings down. So they installed a PIC line and fed me intravaneously until I stabilized. By then my potassium, blood salts etc. were so compromised that my heart and kidneys were at risk. It is an extremely dangerous situation.

Another serious consequence is that patients in nutritional crisis are often unable to complete their treatments.

The PEG is a temporary measure that can be a lifesaver. You will lose weight anyway, but you will do it safely and without risking your treatment. Please think about it!

If you do nothing else, please ask for a referral to the cancer center's nutritionist. Tell him/her exactly what is happening and ask for help.

Lynn

Just checking in with you all again. I have been able to start eating solids! No weight loss at all, I have maintained my weight. I am doing very well, other than the place in the back left of my tongue. We did a CT with contrast yesterday and I go back next Wednesday and Thursday to the surg and radiation oncologist. We will discuss whether the place is another tumor, or trauma from surgery. He might end up doing a biopsy, which will be surgical as it is beneath the surface.

Prognosis is I would lose my tongue if surgery is necessary since I am already missing most of the right and he would be coming from the left. He would need to cross the arteries. We are discussing radiation only and the success from that, or possible chemo w/ radiation if they do not feel radiation alone would get rid of the tumor and any small cancer cells remaining.

I do not know what most of this really means. I am processing the info and trying to wrap my head around losing my tongue or my hair. So many different things going through my head.

ETA: It took me ten days before I could eat solid food, I am up to about one full meal per day of solids. Everything else is Boost, Ensure or pudding. I have been drinking a ton of water and Boost so have been able to maintain my nutrition until I was able to swallow better. It is definitely possible to strengthen your muscles enough to regain swallowing ability. It was difficult, but I worked hard to make it happen. It really isn't easy still, but if I want something other than Boost I have to push through and make it work.

Outstanding Katy - your determination is noticeable and I applaud your results. Best of all you seem to be not letting the upcoming tongue surgery bother you psychologically. Your load would be weighing heavily on many, but you seem to be staying above it.

I know Christine will be especially happy with your weight maintenance. For her weight loss is a big thing.

Keep up the spirit, your positive, can do, succeed over all difficulty attitude is very motivating to all of us.

Tony

Thank you, Tony. I try not to let it bother me too much. Truth is, I break down sometimes, but my husband is amazing at having my back. He's truly been my rock through this. After two partial glossectomies and the neck dissection, I think we can make it through almost anything. I'm scared for radiation and the possibility of chemo, but I'm going to keep on pushing through.

I was so determined to eat. I did so good with the Boost that I kept thinking, I bet if I tried hard enough I could swallow something solid. It has to be foods that will go straight back, anything that is mushy just got stuck. I found a way though and I have ate burritos, hot dogs, steak fries, etc. Things that are kind of bulky but you can cut into tiny bites to make swallowing easier. It truly helped me and has been what I needed to maintain my weight. I've had more of an appetite the last three days than I did the first ten.

I hope I can be as strong and persistent once radiation starts.

I am so grateful for this group. I have learned so much information I would not have even thought to ask before.

They have mentioned the PEG, but only if I were not able to keep my own nutrition in control. If something happens that I'm unable to eat or drink orally once radiation starts, they will go ahead and PEG me. They do want to give me the opportunity to try first though. I'm very aware of myself and will be sure to keep close track of my health.

I thank you all so much for the support and welcoming me to the clan. Not a place any of us want to be, but I'm glad there's somewhere for us to be together.

I am concerned about the possibility of losing my entire tongue, does anyone have experience with this? What does it mean? Can anything be done to repair or replace the tongue? I know it essentially kills it so obviously it would not regrow or ever work again. I just cannot wrap my head around this possibility.

Hi Katy,
I see you are scheduled for radiation treatment. Hopefully , that's all that you will require. Try not to worry about whether any other surgery may be required in the future. A total Glossectomy is the removal of the entire tongue. This type of surgery is a last resort or salvage surgery for a recurrence of tumour.
You are no where near this.
Prepare yourself well for the radiation,I'm sure you will have read up and been given lots of advice already.
Don't worry about things that may never happen.
Kris and I have walked that particular road.
Take care,
Tammy

Katy,

Stay positive and push hard to keep in play the option of being treated with radiation and chemo rather than the surgery.
Treating cancer is a lot about a balance between killing the cancer and quality of life. You are so young that QOL issues are likely given more weight but you just need to be 100% all the options have been laid out and you are comfortable with the road ahead.

Best wishes
don

Thank you very much for the info.I'm pushing hard for radiation, or chemo plus radiation. I definitely don't want to lose my entire tongue if I don't have to. I should have more information Wednesday. I hate how the waiting makes the days feel like months. Nothing about this journey has been quick or pleasant. I'm thankful for all of the support and information.

There we do have a woman here who's had a total glossectomy she is doing insanely well, can taste and talk - hopefully this isn't necessary though. Hugs and good luck.

Hey Cheryl,
Kris has had a total Glossectomy. Some 2 years ago now. He tastes and talks.
Tammy

Yep... Not that I would ever want it to happen, but a glossectomy - if it renders you cancer free - is worth it, and while it may effect quality of life in the short term, I think it is very overcomeable (is that even a word?) and frankly the body has a way of making up for the loss of something like that - for the most part. hugs

Hey everyone. I had a CT scan.but it didn't show us anything. I'm scheduled for a PET tomorrow. If I have any disease left, I will have chemo and radiation therapy, plus I'll be recommended for the PEG. If they don't see anything then I'll have 6.5 weeks of radiation only. I'm anxious to start treatment.

So, it looks like maybe some things are beginning to go your way. No more surgery would be great, one more hurdle crossed with one or two more to go. We call that progress and some days any form of progress is the best thing for our sanity.

Since my last post of a week or two ago I see your spirit remains strong. That is an incredible asset to have during this journey, it just makes everything more tolerable, no matter how uncomfortable it is.

I know upcoming radiation scares you, but you don't know it will be bad. I too thought it would be horrible. But, once I got into it I found it wasn't bad at all. Food tasting horrible and some mouth pain (little to no throat pain) were about as bad as it every got for me. You might be one of the lucky also, so you just have to wait and see what comes. No matter how bad it is, your great attitude will make it easier.

Keep fighting and keep writing, you are an inspiration to many.

Tony

Hi friends. I had a clear PET scan last week!!! I was very excited to find that the new place is not a tumor. I start radiation on Thursday the 27th. They did not suggest chemo, but I have requested to see a medical oncologist and have that appointment Wednesday. I will take his opinion. He is Dr Frank Greco, one of the top medical oncologist in the world. If he says he doesn't think it's necessary then we will forego. If he suggests chemo then I will go ahead and have the PEG placed per doctor's orders. I'm nervous, but not in a bad way. Ready to get treatment started and get it over with.

Awesome on the scan!!

Thank you, Cheryl.

I also spoke with my medical oncologist and chemotherapy will not be necessary. We believe the place in my tongue is an inflamed taste bud.

Question about PEG tubes. My radiation oncologist is confident I won't need one. I've inquired twice already and he says that he does not recommend I get one. How can I express my concern with this? I feel like I should get one just in case. Especially as I am still learning to eat some things again and also have lots of nausea and lack of appetite as it is. Isn't it smarter to get one just in case?

Katy, since you will not be having chemo you will have a slightly easier time of it them patients who have chemo with their rads.

Some members will tell you how important it is to have "just in case" while others will say you dont need it. This debate is never ending, there is no right or wrong, its known around here as the "peg wars". Weather you will need one or not depends on you as an individual. You can always have one put in later if you start to struggle or get a nasal tube which is more temporary and doesnt require surgery. Even if you would get a peg tube you will still need to swallow every single day to help keep the swallowing muscles in working order.

The biggest thing that you need to remember in getting thru your rads is focus on what is within your control.... your intake. Every single day you need to take in at least 2500 calories and 48 oz of water. If you can take more in thats even better, especially water. I suggest you begin pushing yourself now to get that amount of calories in every day. Dont fall into the skimping trap thinking you can make it up the next day, tomorrow never comes and pretty soon skimping becomes routine. Before you know it, dehydration and malnutrition have set in and a hospital stay can happen. Prior to starting rads, talk with your doc about giving you a prescription to get hydrated in the chemo lab. If he wont ok a feeding tube at least he can help you avoid one by getting extra fluids a few times per week. This will help you to feel good too.

If you would like my chocolate peanut butter milkshake recipe let me know. Each one has at good 1200+++ calories, maybe even 2000+. Im not one to measure exact so Im not completely sure the number but its very high. Many days I would drink 2 or 3 of them and never gained an ounce.

Best wishes!

Hi Katy, how are you doing? Read your story, i've been in this journey too. Almost in your age. I was 29 when i discovered the cancer on the right side of my tongue. I was stage one and all my exams are fine and hope they keep like that for the rest of my life.

I think your should ask your doctor about the differenciation of your tumour. Was it poorly diferenciated? It is really fast moving to have those recurrences is a such few weeks.

Let us know and count on me

Thank you, Christine! That is where we are as well, RO says I do not need one and DO says get one. I am going to wait it out, I think I will do okay without one.

I started RT today. One session down, 29 to go.