Hi, I'm Jenna. I was diagnosed with SCC of the tongue on 9/18 and had a partial glossectomy on 10/22 (50%), free flap reconstruction,radical neck disection. I'm 46, non-smoker,non-drinker, healthy. Who knows how I got this? I'm sure everyone asks that question.I spent 11 days in the hospital which were harrowing. Supposedly, all went well, but the experience was incredibly scary. The Dr. said he removed the tumor with clean margins. Two nodes were affected. Not sure how many were removed.
So, here I am, 3 weeks post and I am still so sore. My left wrist is really weak and my neck is so stiff. I've gotten exercises to do, so hopefully that will get better. But, my speech and ability to eat is what's really worrying me. Right now, I'm able to eat or rather drink Carnation Instant Breakfasts or pureed soups. I'm trying to eat as many calories as I can as I've already lost 10 lbs and don't have much more to spare. My speech is muffled. My husband can thankfully understand me.
I'm meeting a radiation oncologist tomorrow. So, not sure when that will start. I've read lots of stories so I'm scared. Hoping for some words of encouragement, advice, etc.

Very glad this forum is here!
Jenna

Hi Jenna,

You're the same age as I am and I just had one third of my tongue removed on Oct 4th. Do you have a feeding tube? If they are having you do radiation, please ask them for one if you don't have one already. If you've already lost 10 pounds and can't afford anymore, you will need help nutritionally during any further treatments.

It hasn't even been a month since your surgery, give yourself alot more time to heal and adjust to the new you. It's amazing what we can adjust to. I'm still in the healing process and I had my surgery before you. It's easier for us if we understand that healing is a slow process and that our bodies, not us, will set the pace.

Wishing you well with your recovery and keep posting , it will help you.

Minnie

Jenna,

I wish I could tell you this was an easy road to travel , but all I can tell you is there will come a day where it will get easier. you have come to the right place for support an answers to some of your questions.

I know I ask alot of those same questions that you do and so far no Drs have any answers for me except I was in the wrong place at the wrong time analogy . they said it was like I was standing on a curb and a car jumped it and hit me . Not answers I like , but One I have to except at this point . We are all here for you and hold you in our thoughts and I will answer anything I can . I lost 25 % of my tongue in feb. I can talk and eat just fine now . my thoughts are with you and I sned you cyber ((((HUGS))))


Shar

Hi Jenna and welcome to OCF! Don't let the stories of others scare you...there are exceptions to every rule! Just know that we are all here for you, and will offer assistance at your request!

Did your physician recommend a PEG tube to supplement your caloric intake?

We're glad YOU'RE here!

Lois & Buzz in NC

Hi Jenna14. Please read my story also on this board.
2 years cancer free / happytobealive
DO NOT GIVE UP HOPE!!

Your friend Thomas in Calgary, AB
Thomas. Cheers!

Hi Jenna, do not be scared, I had the same diagnosis 5 years ago at age 44....you will be fine, keep thinking positive thoughts and know that we are all here for you....I didn't find this board until almost two years after my surgery and radiation and it truly has been awesome! Keep posting, you can pm or email me for specifics.......Take Care, Carol p.s. I am sorry you have to go through this, but you will make it!

Hi, Jenna, a different question--If your husband is to be your primary caregiver, will he join us here? He will learn some very helpful things about caregiving during radiation tx. if he does. There is trememdous support & knowledge available on OCF. Get your list of questions ready and best wishes. Amy in the Ozarks

Hi Jenna,

My wife's case is very similar to yours. She is 33 years old, non-smoker, very healthy ect..dignosed with tongue cancer on her left side of tongue wihch spread into her lymph node on her left side of her neck. She had a partial glosscetomy with free-flap reconstruction, bilateral neck disection, followed by 6 weeks of radiation.

Post surgery she was unable to eat solid food for a few weeks, like you she started drinking carnation and boost, this progessed to fruit and vegtable drinks that we made using a juicer, milk shakes with whey powder(protein)ect... Eventually she was able to eat solid foods like eggs, pasta, fish, beans ect.. this happened around the fourth week., keep in mind that every body is different and heals at differnt rates, please try to be patient and eat/drink what you you can, don't worry so much about your weight, your doctors will tell you if there is anything to worry about, right now just take in as many calories as you can and be happy with that, in the begining my wife was only taking in 1000-1200 calories, not much, but was able to cope, your body will adapt.

Your speech will improve once the swelling subsides and healing takes place.

As for radiation hers started 6 weeks post-surgery as you need some time to heal prior to starting. Radiation is whole different ball game. Its going to be really though, particularly around 2-3 weeks in when the side effects start kicking in and really bad 2-3 weeks following. You will probably only be able to take in liquids during treatment and some time afterwards. Again I'm not trying to scare you, everybody reacts differntly, some better than others. My wife had a severe reaction to radiation but she kept positive with my support and family. She lost alot of weight during radiation treatment, who cares...she took in enogh calories in liquid form to sustain her through this rough time.

On a positive note there is light at the end of the tunnel, about three days ago she started to eat solid foods again pancakes, eggs, fish, ect.. she even had a piece of strawberry cheese cake.

Its been a long and hectic road to this point but we made it here keeping things in perspective. One more thing, please surround youself with support during your treatment, your husband will need to help you get through the rough times.

Good Luck...

johnny

Thanks Everyone,

I really appreciate all the responses I received. It really helps hearing from others in similar situations. I saw the Radiation Oncologist today. He explained all the possibilities to me. Yeah, it was pretty scary to hear what could happen. He seemed very encouraged by my pathology report and the fact that clear margins were obtained during the surgery. He said I don't need chemo. and I was very happy to hear that.
Radiation should start in about 3 weeks, but we'll see.
I am so looking forward to eating and speaking again. Patience is pretty hard to come by these day, but don't have much choice. I'll get through this. Luckily, my husband is a rock and is with me every step of the way.

Hi Jenna, reading Johnny's post about his wife sounded almost identical to my situation 5 years ago....except I had two lymph nodes positive for c in my neck......I am so glad you have your husband.....mine was a rock and with me also.....The radiation is no picnic, but hey, it is what we must do......I will be thinking of you and hoping for the best...You can do it! Love, Carol