Hi My Name is Amy, Im 38 years old non smoker and was just diagnosed with SCC stage 3 on 2/3/14. I had a lump a year ago under my tongue after being diagnosed with Lichen Planus a few years prior, the Dr wanted to do another biopsy to check to see that it was still that diagnosis, but I didnt think Id have cancer and figured Id just live with it, until a few weeks ago I miscarried and my tongue got more painful and noticed lesions were bigger under my tongue, went for biopsy and said it was invasive scc so Im scheduled for surgery on 2/28 to remove half of my tongue on the right and lymph nodes on the right (poss left depending on CT results from yesterday) anyway Im just wondering about the speech and eating, how hard it all is and what will I sound like, how hard is it to communicate and when can I expect to read a story to my 20 month old daughter again? Thank you in advance, Scared, nervous, anxious, ready to be over, not sure what to expect, still in shock....

Welcome to OCF, Amy! Im sorry to hear of your diagnosis but Im very glad you have found our "family". We will help you with info and support. I suggest reading the forum and main OCF pages to educate yourself. An informed patient is a strong patient who can advocate for themselves.

Believe it or not, your speech may not be that different. You might notice it but most others will not. Getting a speech pathologist on board from the start will greatly help you to overcome and speech difficulties you may have afterwards.

If you havent done so already you should get a second opinion. Preferably from a comprehensive cancer center (CCC). Surgeons always recommend surgery, radiation oncologists always say you need rads, and so on..... But think of it this way, once its been removed you cant put it back. Thats why its so important to hear what a CCC will give for a treatment plan. A CCC has all the specialists on the same page as they get together for team meetings to discuss each case individually. If you must delay surgery by a couple weeks it shouldnt make much of a difference with the tumor growth but it could make a huge difference in what your treatment plan is.

Bottom line.... get the very best medical care you possibly can... your life depends on it.

Best wishes!

Hi Amy - all the fears and worries you wrote about are what all of us faced when first diagnosed. In the beginning, it is scary, mostly because none of us know anything about cancer until we have it. And then, it's this super steep learning curve we have to negotiate, so much to learn in so little time.

But, joining the forum family is the best first step you could ever have taken because either we've already been through it or are going through it with you. We all had experienced people to help us get through it and keep our sanity, and now you have that available to you too.

So, like Christine said above, get over to the web pages and start reading about diagnosis and treatment and all the other topics over there. Get yourself a spiral notebook because you are going to think of a million questions to ask your doctors, your nurses, other people on the forum. You won't be able to remember them all, so write them down.

Others will come along soon to answer your questions about the surgery. I didn't have that surgery, so I can't help you there.

We will be giving you more advice as time goes on, but you have enough on your plate for tonight.

take care, write and ask when you need too.

Tony

Hi Amy - I was back to reading to my son within about 6 weeks after having 60% of my tongue removed, the key seemed to be that the surgeon was able to save the tip of my tongue and that really helps with pronunciation.

Really sorry that you have to face this, but with this forum and a good comprehensive cancer center you'll find lots of help to get through it.

Hello Sweet Amy, You have been dealt 2 strokes of bad luck & I am so sorry. I also had a miscarriage (in my 4th month). My 30 yr. old son now, was only 18 months at the time. It's a sad ordeal to go thru. You wake up pregnant in the morning & go to bed that night not pregnant, no baby, just wonder & sadness. I DID have a healthy baby girl with my next pregnancy! SO HANG ON TO HOPE! Now about this cancer. It sucks & has no right to interfere with our business of living! But, you are not alone. I too am facing surgery. You are ahead of me, as I just got a (positive) biopsy last week. We will get through this together!!! We are women, we are mom's! And hot dam girl, they got good drugs to ease our pain! I have no pride & plan on whining the minute I walk in the hospital! I have been through oral cancer in 08, treated w/radiation & chemo. Like childbirth, you do forget most of it. My advice to you Amy, believe & know that every second that goes by, brings you closer to being Cured. Draw courage for the love of your child. Lean on the Angels on this forum! I am right behind you & we will carry on!

Hi Amy - I had the same surgery followed by radiation and chemo and I'm doing great (so far) the surgery sounds daunting but for your type of cancer your ENT is right on track. This is the standard and expected treatment. Being at a CCC is important but since you have your surgery so soon, I would go with it, then if you have any further need for treatment follow up at a CCC. (Assuming you aren't already at one. Pain wise the surgery is not too bad. You'll find you are numb from your ear to your collar bone and this will stick around for a while. I'm three years out from surgery and I'm still getting feeling back though there are areas I am sure that will be numb forever, you will look horrid but that will pass in a few weeks, 17 days after surgery I was on a beach in Mexico with two dressings (trache - which you may or may not have) and my wrist (donor site) I was eating soft foods and doing okay. The trache was gone day three of my hospital stay, drains day 1/2 (2 drains - he removed one the day after surgery the second the next day) IV day 2 (needed no real pain meds) catheter day 1. I was showering day 2 - I as super motivated though, and have a fairly high pain tolerance. You will get through it - hugs and welcome and hope your scan results are good.