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#195553 12-30-2017 12:10 PM
Joined: Dec 2017
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Hello everyone. I'm a 22 year old girl got diagnosed with SCC of the lateral tongue about 10 days ago, and surgery is due in the early new year. I was in the middle of my second to last term of school, which has now been postponed.

I was initially trying to stay positive, for my amazing boyfriend that I live with and my mother who battled (and conquered) breast cancer years back, and it was going well. I stopped googling survival rates and prognosis because they really weren't comforting, and was focusing on just moving forward and waiting out the holidays to be over so the ENT could come back from vacation and I could start the treatments.

However, I've noticed that what I initially thought was the tumor site extends larger than I originally thought - the borders of the ulcer I have currently have possess a hard mass that extends further back, even though the doctor said that the clinical size is 2 cm. I've had this for a long time as well, and it's poorly-differentiated. It also hurts further back now.

Its been a really tough night. I'm losing weight pretty rapidly which worries me, and I'm trying to put it on before surgery. I'm meeting with my surgeon in a couple days to talk about the surgery, but its hitting me somewhat hard right now. I don't know what to do or how to get out of this mind-set until the surgery when we'll find out more.

Any advice on how to think differently? Thank you.

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Welcome to OCF! You have found the right place to get info and support. Dont worry, we have been where you are and understand exactly what you are going thru. I suggest reading both here and on the main OCF site. An informed patient is a patient who is in control and can better advocate for themselves.

I suggest speaking up at your next appointment and asking what your treatment facility offers to help you cope with your cancer diagnosis. It is definitely a very scary time. On the main OCF site I found all kinds of tips to help patients learn hope to better deal with the mental aspects of cancer. They should have a counselor or therapist who you can talk with, or at least they can point you in the right direction. Ive included the link at the end of this post.

Stress will cause all kinds of negative problems for patients. Do your very best to limit the time you spend thinking about cancer and try to avoid the "what if's" as much as possible. Your weight loss is probably due to the amount of stress your recent diagnosis has caused you. Now is the time to eat all your favorite foods and have desserts too. If you're on the slim side then yes you need to gain a few pounds before going into any treatments. Go for full fat, highest calorie everything. Milkshakes have alot of calories, add half and half to your coffee or hot chocolate, drink chocolate milk (400 calories a pint), ice cream, pasta, cheesecake, all are high calorie options you can try.

Avoiding Dr Google will help shield you from all the false cures unscrupulous people try selling to sick people. I find it absolutely disgusting anyone who intentionally attempts to profit from taking advantage of others who are at low points in their lives. By constantly checking your mouth, you will start to notice all kinds of teeny tiny things which probably are not even related to the cancer. Our minds have a way of playing tricks on us when we are worried. This is probably another factor in your weight loss. When you find yourself dwelling on your situation or cancer or anything negative force yourself to limit the amount of time to ponder it then physically get up and "change the channel". By "change the channel" I mean to go do something positive instead of thinking about all the negatives. Give yourself 5 minutes then go clean out your closet, vacuum, or other chores that keep you busy. Start a new hobby, read books that hold your interest or workout, just do things that are positive and productive which should help you feel a little better.

Hang in there! I know its not easy but you can get thru this. Being young is a huge advantage and will help you bounce back quicker than someone older. Stop by often to read, post, vent, etc. We're here and will help you get thru this.

Best wishes!!!


Main OCF Site... Coping




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2017
Posts: 15
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Posts: 15
Hi Christine,

Thank you so much for the lovely words, you've no idea how much you've warmed my heart. My emotions are somewhat a roller-coaster, and while I'm sure this is normal it's very taxing. I'll be positive one day and I'll wake up the next with anxiety. It's hard being in the first stages where you don't know anything, but then I think how we're all in that position always, whether it's waiting for scans, pathology results or whatever else. What a ride.

Thank you so much.

Joined: Jun 2007
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You're welcome smile This is exactly why we're here. We have been down this road before and know all kinds of little things the medical community doesnt think of to tell patients and caregivers. Just knowing you arent alone in this can help most patients to feel a little better mentally.

Practice the things I mentioned in my previous post and in time you will better manage the bad days. As I read thru the Coping section on the main OCF site I saw so many great tips to help patients feel more secure in their situation. Managing all the waiting time should also help you to feel more at ease with everything. Talk to your doctors and nurses about how the treatment facility can help you to manage your emotions about everything you're going thru since your diagnosis. Its completely normal everything you are experiencing. Ive found learning about your illness helps to make you feel more in control which will help you to have a more positive attitude towards all your new challenges.

Your post has over one hundred views from other members. And thats only the people who are registered members, thousands of others read posts but we only count the registered members. You have a small army in your corner, together we will help you get thru this. To me, I felt like I found my long lost family when I first joined OCF 10 1/2 years ago. I was soooo naive about cancer that I actually was concerned about losing my hair which I can now laugh at smile You're with a great group of people who really do care and will help you. Best wishes!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
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Joined: Jun 2013
Posts: 346
Likes: 3
((hugs)) We didn't even know mine was cancer when I went in for my surgery ... it was just a sore that wouldn't heal. My doctors at least had the sense, after observation wasn't good enough, to agree that it should probably be examined and, as one put it, 'cut it out and give it a fresh start to heal' ... but he did biopsies while I was out, and that's when he found the cancer and kept going back till he got clear margins. It was jarring, to say the least. And I'm an anxious person by nature. After the first surgery, things actually healed pretty well, but you can see by my signature things got more complicated later. Worrying didn't change anything though. And though Christine and everyone are right about trying to keep up calorie count, if you can't do it, don't let that be another thing you fret about. (Gosh, the worrying I did over that!) We're all here rooting for you. I just went through another surgery where I should have stockpiled calories ahead of time (and believe me, I tried!) but my body is just not wired that way, and that's okay too.

I'm older than you are (by rather more than I'd like to admit), but my mom had breast cancer a few years before I had tongue cancer, same as you. As we don't have much of a family history, this was a surprise all around. She was a good support for me, though.

Find some good shows to binge watch, both now (to distract) and for later (recovery). Or read, if you find you can read well during recovery and you're so inclined. (I always think I will, and never feel well enough.) Find a fun game website and play all the crazy online games you can. Start a new hobby. (If you can't do school right now, what would you want to do? Me, I love doll collecting, among other things, and I spent chemo time sewing small 6" scale doll clothes and accessories, when I wasn't napping. It was fun and portable and something to chat with the nurses about.) Go see good movies, multiple times, and rip them to shreds with your friends. If you plan to recover on your sofa near the TV, hang some bird feeders near the closest window and grab a bird guide to keep handy as well. Whatever it takes to distract, go for it. It's all good. (I'm a woman of many hobbies. I use these as a Scout leader so's to justify them all. LOL. Try woodcarving while being on pain meds ... or rather, don't ... but it's great for soothing the mind.)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Jan 2018
Posts: 15
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Joined: Jan 2018
Posts: 15
You have already received some great inspiration and help. In my case I reached out to the mental health department at the VA hospital where I was being treated. Having someone to talk to 1on1 that knew psychologically what was going on really helped in my case. And it doesn't have to be a mental health professional a pastor or very good friend will help. I found I needed someone I was not kin to or in love with. When I was going through everything I don't remember the internet, I'm sure it was there, but in my wife's recent case with breast cancer we found it best to go off-line. Too much information and so much of it is not good. It's hard to decipher the correct stuff. Your health care specialist are the BEST source for information.
Bryan

PS: There is nothing like having milkshakes anytime you want them. Go for it while you can, because soon all of this will be pass and life will continue, just only without the OK for shakes! wink


15 year survivor of tonsil cancer. In 2002 I was diagnosed with Stage III squamous cell carcinoma. I had a left neck dissection, teeth removed, and 38 radiation treatments. In 2015 I received a feeding tube and in 2016 a trach, both due to radiation side effects. But I'm happy to say that life has been good to me!!

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