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.