I was first diagnosed when I was 25... newly married. We just celebrated our first anniversary. It was 2007. I was told it was a very early SCC T1N0M0 moderately differentiated and with a partial glossectomy and selective neck dissection I would be cured. Well, 4 years and two babies later and I have SCC again. Yet again it's early, T1N0M0 poorly differentiated + Tis... I had my partial glossectomy (again) on 5/3/2011 and was feeling pretty good until I just found out a few days ago that my margins are too narrow and in addition to the lesion we saw there was a separate focus of cancer a few mm away... Now they want to do radiation tx.

Can any of you tell me what radiation will be like? No chemo... just the rad. I'm absolutely terrified. I have two small children, a 3 year old little girl and a 10 month old baby boy... My support system is fantastic, but I worry about how I will take care of my children and what will they see their mom going through. I know everyone is different... but do you think I can keep being an active mom or will I need to step back for awhile?

Anyone out there as young as me? I'm only 29... I have a hard time meeting people at a similar point in their lives that are going through this sort of thing.

Thanks for any responders. The more information I can have the better I can prepare my family for what we are all about to go through.

Sherry, welcome to OCF, you are not alone anymore! There are several young survivors on the forum. Ive seen members as young as 17 years old. So you see, your age is not 'too young' to get oral cancer. Im sure you will hear from others who are in their 20s. Im thinking of 2 young women who each have 3 young children.

You can get thru radiation! "Everybody's different" when it comes to responding to radiation, medications and recovery. This is especially true with radiation treatments. Some sail right thru it without much more than a sore throat while others suffer and struggle right from the start. I am a firm believer of positive thinking helping to make it a little easier on a patient. There are many many posts about radiation you can read about on the forum and the main pages of OCF. I would suggest you read and educate yourself. An informed patient knows that its best to prepared for the worst but hope for the best.

I would suggest that you make a list of every single person who offers to help you. Write down their name and number and tell them you will let them know when the time comes that you need help. Sometimes friends and family members have a hard time handling someone's illness and they run for the hills. Even people who promise to stand by your side and help you may not live up to their promises. While going thru radiation it will get progressively more difficult. Being a mother of young children will be a challenge at times. This will be where your helpers will come in handy! Even if they take the children out for a walk or to the play ground, it will be helpful.

If you are able to eat, try to bulk up a little now as your sense of taste will change for a while. Dont worry, its usually a temporary change. There is a list of easy to eat food that you may find helpful down the road under the 'eating' tab.

Dont worry! You have found a great place for help. We are with you in your corner supporting you thru this.

Sherry,
I am 33, 31 at diagnosis. I have a 6 year old and a 9 year old. They were 4 and 6 at my first diagnosis. I am not going to tell you it will be easy. The first two to three weeks of rads are the easiest, then the side effects start showing up. After the three weeks I had to take a step back and rely on others to help with the kids. My kids would come and lay down in bed with me and we would watch TV together, but that was the extent of what I could do on some days. I also let them help when I was tube feeding so they could be a part of it all. They really though that was cool. It all depended on the pain level. If you can get the pain under control it will be a lot easier. Feel free to PM me if you need anything or have questions.

Hi - I'm older than you but there are a few in their 20s on the board - I just finished radiation and chemo a month ago.

Radiation is not fun but it is doable - its a hard path to walk and yes by week 3 you'll likely need some help at home and with the children. Fatigue is a big issue as is pain depending on how bad your mouth and throat get. (assuming they are radiating the neck area)

Make sure you get flouride trays and see a dentist before hand just to be on the safe side.

Remember to slather on the cream after radiation before bed etc... This helps your skin.

See If you can get a prescription for magic mouthwash - you'll need it at some point. Try to eat as long and as much as you can - and drink too. It may not be easy but it's important for maintaining your swallowing reflex.

Stop any antioxidants you may be taking now. They work against the radiation.

Carry your baking soda and water mix with you - I used to rinse right after treatment and put my cream on on the bathroom.

In the summer months keep the radiated Skin protected from the sun. Scarf, hat etc...

You should be okay - just explain to the kids you're going to be a little sick for a bit but you'll feel better soon. Kids do get it.

I'm one of the people on the forum who used Manuka honey - it helped me -look it up and check with your dr. It may help you.

I know it's hard - but you will make it through. Nothing will taste good for a while, but eventually your taste should return mine is back about 20-25%
You may lose some hair - I did but it's no biggie.

If you are going to have a peg - still try to swallow daily.

Get a baseline tsh blood test so you know if your thyroid is affected.

Take care and if you have any questions feel free to pm me.
Best of luck.

Hi,
I thought I wrote the reply like, "I know better than you, so listen to me", and that is not what I wanted to convey to you, so I am editing this post. I'm just concerned about the close margins and the other spot that is a few mm away, and it sounds to me like you need to make really sure right now what all is going on. From what I have read (I am not a doctor, but my doctor has told me this as well), for scc of the oral tongue you stand a better chance of getting a handle on it if it is surgically removed from the outset, taking wide margins. Poorly differentiated cells respond better to chemo than well differentiated ones--it kills the poorly diff. ones more easily. I can only imagine how scary and difficult this is at your age and with two young ones. We have had several women with tongue cancer at an early age and with young children on this site. Now this is the rest of my post before I added this paragraph:

I think you might want a second opinion. If it is poorly differentiated, you've had scc once before, and you have another focus in your mouth, I am surprised they are not recommending chemo too. You don't want it to come back again, so pulling out all the stops it seems to me would be beneficial. Are you at a cancer center? Has there been a tumor board?

I know this is not what you asked, but you don't want to waste time, or just get the radiation and find out later you should have had chemo.

Sorry you are having to deal with this, especially with young children.
Anne

I totally agree with anneO btw... Chemo will help the radiation work - also it might be best to have them remove the remaining scc. Good luck - I know this isn't easy but you'll do okay. Hugs

Anne-

They did remove all of the tumor surgically first- the T1N0M0 and the Tis (separate focus). My margins were clear, but had that separate focus (Tis) only 2.5-3mm from the anterior. We didn't see it nor expect that it was there. Everything around it is clean. I am currently 'cancer free'. My understanding is they want to do the rad for cleanup.

I am currently receiving treatment at Emory Winship in Atlanta. He took my case to tumor board where they recommended the radiation... No one has said anything about even considering chemo.

Sherry,
I did not read your original post correctly, sorry. I thought there was another area besides the Tis. Just concerned about something being left. The chemo associated with radiation is supposed to be "relatively" minor; it cleans up, too, like the radiation. The situation now is that it is commonly given with radiation especially when there is a question of the cancer being aggressive. You might ask about it anyway, just because it is so good for poorly differentiated scc. I know that you don't have any obvious disease in lymph nodes, so that's great.

Sherry, IMO one of the best things for patients undergoing radiation and other treatment is a good support system. I believe you mentioned that. It is worth everything. This cancer can be cured. I had a good support system as well, still do. It means everything to me. I decided I was going to keep my nutrition and my strength up during treatment. I made that my job. But I did not have young ones, mine are grown, my daughter is about your age with a young baby of her own. You can still "git 'er done", as long as you have help with your family.

Best,
Anne

Thanks, Anne. I've started telling myself constantly that "I am stronger than this cancer and it will not beat me." I have to fight with everything I have in me... I have two babies that need a momma and whatever I have to go through to be here for them, then so be it. Thanks for your support. It's nice after 4 years to finally have found people that understand...

Sherry - I am close to your age, 33, and have an 18 week old daughter. I just had my neck dissection and second tongue resection on Friday so I am waiting for that to recover before starting radiation. It sounds like we may be undergoing treatment around the same time. I'm so glad to hear that you have a great support system. I know that will make everything easier.

I'll be sending good thoughts your way.