Hi,
I am so glad to have found this site. I wish I would have found it last summer!

I was diagnosed in August 2007 with SCC on the front right side of my tongue. I had a chipped tooth and thought the sore on my tongue was from that. The sore didn't heal after the tooth was fixed. I went to my GP who said I needed to see an ENT that day and get biopsied. I saw the family ENT who wouldn't biopsy as my GP suggested - the ENT said he's been doing this 30 years and was a dentist before becoming an ENT and this wasn't cancer. He had me take antiobiotics, then anti-viral and thrush meds. This went on all summer. I had a problem while he was on vacation which caused me to see a new ENT - best thing to happen to me. He immediately biopsied and it came back positive for cancer.

Two weeks later, I had surgery on 9/06/07. I got an infection from foley cath and was in hospital for 15 days (106 fever, infection and then pulmonary embolism). Five weeks later, started radiation. The surgeon and RO said it's better to be aggressive and even though some might say I didn't need radiation with T1N0M0, they felt it better to be aggressive particulary since I have never smoked and only occasionally have a drink. They also said there was nothing to target after surgery so IMRT was out. They did what they referred to as 'old fashioned' radiation - widespread, the upper half of my neck and the lower 2/3 of my mouth. They said it would be rough, and they were right. But still, it's one of the miracles of modern medicine. i finished RTx on 12/05/07.

I'm about 90% healed from radiation at this time. I have some blisters in my mouth and roof of mouth still that the surgeon decided might be fungal. The blisters have reduced over the last two weeks taking Nystatin. Since it seems to be helping, they are having me continue the Nystatin. I have a PET/CT in 4 weeks.

I still have some sore spot areas the surgeon says is from radiation. Sometimes that makes me nervous since this all started with a sore. I trust the surgeon and RO and they said I'm doing well.

My husband and I have three children - 16, 14 and 11. I want to be around for many years so I can rock my future grandchildren in my 'granny rocker'. We have a deep faith and we have had so much support from family, neighbors, friends and church. We have been so thankful for all of them and I am so thankful to have found this site and all of you.

Has anyone had lingering blisters after radiation? I do use Biotene products along with taking Nystatin.

Have a wonderful day!!

Hi Kim, we're glad you found this site, too! Thank goodness your 8 weeks ended two and a half months ago! That is wonderful news. My worst month was the one after radiation ended, and after that, a few raw spots lingered inside my mouth and on my external neck. How's your eating coming along? And are you getting enough rest? I would imagine with your children, you are tempted to be busier than your body might like. Please take time for yourself to heal. Consider the downtime as doctor's orders, because that will help your cells to recover, along with solid nutrition.
I'm very grateful you've been in a supportive environment! What a blessing! Good luck, Kim, and please keep us posted. We are all rooting for you and will help any way possible.

Hi Kim, sorry you have to be here. Too bad that you were initially misdiagnosed(as many of us here were, including myself). Glad to hear you are done with treatment. Yay! And I think it was a wise decision to go with radiation for a stage 1 disease because you never know! I don't have any advice about the blisters, but just want to say make sure you get plenty of rest, fluids and nutrition. Teresa

Hi Kim, I had lingering blisters and sores for quite a while after radiation and in fact I still get sore spots every now and then and they always make me nervous because, like you, the location of my cancer to begin with seemed to be related to a tooth next to a tooth I'd had pulled that was rubbing against my tongue. My ENT tells me that irritation of the tongue by itself isn't really a cause of oral cancer though, so I don't know what to think.

My cancer was initially overlooked by my dentist, so I know how frustrating that initial misdiagnosis can be.

Where were you treated in Missouri? My ENT did his residency as Wash. U./Barnes in their oncology center there. In fact, I may be going there in the next couple of months to get a seocnd opinion on some syrgery he is recommending to help with the trismus in my jaw.

Anyway, hang in there. You are still really in the early days of recovery and things will get much better it just takes time.

Nelie

Thank you for your replies!

My dentist also overlooked it - even when I asked him when getting the tooth fixed. I now have a new dentist

I'm doing okay eating - no spices, crispy textures, or dry foods of course, but I'm eating regular foods a little more each day. One challenge I have is making sure I don't each too much vitamin K as it interferes with the blood thinners I'm on from the pulmonary embolism after surgery. I miss broccoli and spinach. Getting the blood thinner dose correct has been a challenge since surgery since I haven't eaten normal since then, but in the next month or two they said I may be able to add back some broc/spinach as my diet gets more normal.

I'm trying to get enough rest. I'll have a day or two with alot of energy and then I about drop from exhaustion for a few days. The docs released me to work 1/01/08. RO said full time but surgeon said part time thankfully. Started back full time on 1/23/08. My house is a mess, but oh well. I need my naps :-)

I was treated at St Louis University Cancer Center. Wash U is very good so I know you have a great doc too! Let me know when you are coming to St Louis!

Thanks again for your replies! Hope everyone has a great day today!

Taking it one day at a time,

Hi KimK,
Persistant and recurrent blisters and mouth sores can be a nasty side effect of your treatment. There are some things that you can do to minimize their occurence and ease the discomfort.
Avoid alcohol, in any form. Use alcohol free mouthrinses the Biotene line of products are great. I have said, as have others, if you go on the Biotene website and send them an e-mail they will send you Free samples of their products.
Keep hydrated, drink lots of water!!
Use a toothpaste that has a mild flavour and no fancy whitening ingredients or baking soda. The Closys II products are helpful in this area and you may want to check them out. They are kind to mouth blisters/ulcers and also help prevent them.
Make sure you are getting adequate nutrition, vitamins and minerals. Tissue integrity depends on the proper supply of nutrition.
On occasion I have fabricated smooth upper and lower mouthguards for patients during radiation/chemo that they can wear to prevent their teeth from abrading their weak tissue. They can be worn day and night and are very helpful. Ask your dentist if you may benefit from them.
Get plenty of rest and try to reduce stress.
I hope this is of some use.
Cheers,
Mike

Kim,

Did they ever tell you what they think caused your SCC?

Also even though you are in your recovery stage you might want to try Carnation Instant Breakfast VHC as it has 560 cals in the same 8 oz can as Boost.

I also lived on broccoli and such before Tx and found it horrible post Tx but now 18 mos Post and everything is A OK.

Thank you for the information!

Initially, due to the increased sensitivity in my teeth after RTx, my dentist had me use MI (tooth)paste. Once that was better, I switched to Biotene toothpaste and mouthwash. Two weeks ago, things healed enough that I could begin using my floride trays again.

As funny as this may sound, I have cravings for Ensure Plus - I was so bored with them since that was all I could get down for quite a while. Then I worked my way back up to baby food. Now - I can't get enough, so with a little real food and Ensure Plus Vanilla, I think I'm staying on top of the nutrition thing.

My docs don't know why I got this. I had an abnormal pap smear right before this started and that was tested for HPV, which was negative. My repeat pap came back normal, so I wasn't tested for HPV again 3 months later at surgery.

I wonder about second hand smoke. I grew up with on/off smokers and many extended family and friends who smoked. Growing up in the midwest, summer humidity, no a/c in the car, and being with adults smoking, getting carsick, I was never tempted to smoke. And it's only been in recent years that the offices I work in no longer allow smoking at your desk - prior to the smoking policy changes, there was alot of smoke and coupled with poor ventilation - it made for some uncomfortable days in the office. When smoking was banned from the office, my sinus problems went away. Sorry to ramble, but i wonder about second hand smoke.

That's why the docs had me do the radiation for stage I since they didn't have anything to point to as the cause of the SCC - they wanted to be aggressive.

I would not have chosen to go through this, but many wonderful things have happened since then for which my family and I are thankful. We try to find something to be thankful for everyday. This site has been such a help!

Thanks again for all of the information - I need all the help and information that is available! I continue to search and read the site daily.

Kim

Hey Kim--my Paps are all normal, yet HPV caused my oral cancer. Surprised they didn't go ahead and test it!

The location of her cancer isn't the typical location for HPV. What interest me is there have been several other people on here who were nonsmokers/nondrinkers and got cancer on their oral (upper) tongue in a spot that was irritated by a tooth or something else. I know supposedly that can't be a cause, but I wonder if in a small subgroup of oral cancers it is a cause and it just hides among the other causes in terms of being detectable.