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#148512 - 04/19/12 06:49 PM Psychological Effects of Tongue Cancer
tanyatalsup Offline

Registered: 04/19/12
Posts: 1
Loc: Virginia
Hi, my name is Tanya. I am 42 years old, have been happily married to my best friend for 19 years, and we have 2 beautiful children together. I was diagnosed with Stage IV squamous cell carcinoma of the tongue in January 2011. I underwent surgery which involved the removal of half of my tongue, removal of 31 lymph nodes from my neck, a free tissue transfer flap from my forearm used to create a prosthesis, and grafting from my thigh to my forearm. I awoke with a feeding tube and tracheal tube. Less than a week later, a blood clot formed which destroyed the prosthesis and required a second surgery and a second graft from my thigh to create another prosthesis. Six weeks following this second surgery, I began chemotherapy and radiation. Although this has been a difficult process in the physical sense, I am finding the psychological aspect to be profound. Is there anyone out there who can relate and provide some encouragement? I have been blessed with a second chance at life and yet I am still grieving the life that I lost. I need a pep talk!

#148516 - 04/19/12 08:09 PM Re: Psychological Effects of Tongue Cancer [Re: tanyatalsup]
wendys Offline
Senior Member (100+ posts)

Registered: 09/24/09
Posts: 177
Loc: MN
Tanya, I went through the same surgery. Although I didn't have to have my flap done twice. It took 3 major surgery's before they finally got clear margines which ended up being about 70% of my tongue and the flap. I know the what your going through, the pain, frustrastion, fear, hunger, anger just to name a few of the things we face. My speach will never be the same, I find that the hardest thing to bare, but after almost 2.5 years I am greatful and living life to its fullest. Things will never be what they were, but things are far better than they were in the early days. So take care and God Bless!
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

#148519 - 04/19/12 08:36 PM Re: Psychological Effects of Tongue Cancer [Re: wendys]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
Lots of us here can relate to you. The loss of what we had, a relatively carefree, healthy life, for the most part without fear, is difficult to confront. I am several months further removed than you are from treatment, and I can say I am thankful that I live in a time where we could have treatment for oral cancer, and great hope of a cure. It could be worse.
I am sure you had IMRT, which is definitely more host friendly. At 14 months outside of treatment, I have recently found that I have saliva that is close to normal--incredible!
There is hope for physical improvement over where you are now, just as wendys suggested.

Others can encourage you more eloquently with their prose than I can, but the crux of it is that there is nothing you or I can do about what happened, but we can move ahead. We can decide to once again participate in life in whatever ways open to us, or we can stand on the sidelines, lamenting our losses. Fear may lurk nearby, but we can refuse to let cancer related fear deprive us of what is ours to enjoy.

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

#148520 - 04/19/12 08:40 PM Re: Psychological Effects of Tongue Cancer [Re: wendys]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9427
Loc: PA
Hi Tanya! You have found the perfect place to get the emotional support you need. We are very good at helping patients adjust to their 'new normal'. I will share a little of my story to help you to understand where I am coming from.

Ive had oral cancer 3 times and the last one in 2009 left me severely disfigured. My left lower jaw was removed and there were complications. I became a patchwork of body pieces transplanted all over. I have far too many scars and sore spots even after several reconstructive surgeries. Before I got sick I was a very attractive vibrant woman and after I am hideous. I think since I was a single mother who had 100% responsibility for my children and everything else it made me mentally very strong.

If this had happened to someone who was a bit more delicate they probably would be shuttering themselves inside their house. Somehow, I have not sat still feeling sorry for myself or spending much time thinking of my old life. I would give ANYTHING to return to my old life but it isnt ever going to happen. Sometimes we just need to realize there are so many others in this world who are much worse off and that they still can live a good productive happy life. I have always been a happy, positive person who sees the good in things rather than the bad side. I have found that by helping others it helps me as much as it helps them. By concentrating on someone else's problems I tend to worry less about my own.

Please think of how fortunate you are to have wonderful children to care for and a husband who loves you. So many people spend their whole lives searching for that special person only to never even come close to finding them. Many many families are longing to have children and they cant. My children are what pulled me thru the last round of my illness. I was ready to give up and let nature take its course but because of my children, I decided I must at least give the surgery a try. I couldnt not try and leave them without a parent or anyone in the world. So think of how fortunate you are to be surrounded by a loving family, that should help.

Maybe doing something to help others would make you feel more fulfilled. Try volunteering at a local animal shelter. Animals are so therapeutic and show their appreciation in such joyful ways. Try volunteering at your church by visiting the elderly or at a senior citizens home. Too many elderly have little or no family that will visit so they are very lonely. Take pleasure in the small things in life and make the most of every day. It is after all a gift to be alive and mostly healthy!

If nothing I have suggested sounds like it would be helpful, please just give it a try. You never know how much happiness you have inside you until you see how others are helped by it. Of course there are also therapists and medications which can help get you past this hump. It does help alot of people. They are the professionals and know how to help get a cancer patient out of the 'cycle of despair'. I really think just by you joining this forum, you will find a whole group of new friends that all 'get it'. Us oral cancer patients are like one big family to each other.

Good luck!!!!
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#148528 - 04/19/12 10:58 PM Re: Psychological Effects of Tongue Cancer [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there I too have had a similar surgery etc.. I was quite blessed to only have to have it done once. I'm 2 weeks shy of 1 year post rads... My surgery was feb 4th, I too had a trache, and 30 % of my tongue removed, a feeding tube, but my graft was from my wrist. I had 40 lymph nodes removed and 5 weeks later I underwent 33 rads and chemo. Finished may 4... Every day gets a little better, I've done lymphatic massage, acupuncture and adjusted my diet most of my taste has come back though sweet and salt are sometimes more illusive. Enjoy now, every day is a gift, and not just because of cancer, but because we are mortal. Do what you can to try and prevent cancer from recurring, then don't give it any more power. It's a thief and will steal your joy if you let it. Enjoy your family and time with those around you. You've been through the wringer, but you've made it. Hugs!

Edited by Cheryld (04/19/12 10:58 PM)
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

#148536 - 04/19/12 11:26 PM Re: Psychological Effects of Tongue Cancer [Re: Cheryld]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
Mine was stage IV tongue cancer as well. I was fortunate in that I didn't have to have a trache or skin grafting. Like you, however, I sometimes find that I resent not having my old life back. I had always had very good health, in fact when I was being questioned about my health history prior to my surgery, and the nurse asked when was the last time I had been hospitalized, I said "Well, my son is thirty years old...". Things will get better, but they really won't be completely the same. Christine's suggestion about getting involved in helping someone else is a good one. I have learned to be grateful for every day that I have, and you will, too! This is a great place to come for advice and support. Welcome to OCF! We are all here for you.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

#148552 - 04/20/12 05:41 AM Re: Psychological Effects of Tongue Cancer [Re: zengalib]
kaitlynpropp Offline

Registered: 04/20/12
Posts: 3
Loc: Arizona
Hi! I had surgery to remove a portion of my tongue, although I did not need a flap the doctor had to cut the nerve so now the left side of my tongue is numb. I also find myself thinking about how my life used to be, I mean I was in college one moment and then the next I was at doctors appointments every day. Most people I talk to say they can not tell that my speech is funky, but I definitely notice it and it makes me pretty self-conscious! In the beginning I struggled a lot and began to become unhappy but I made some changes in my life and now I am ready to get back in the game! One thing that has helped me to get past everything is I use every opportunity I have to inspire someone. I believe that if I get my story out there, I can give hope to other people. I hope that you can also find a way to use your story in a positive way!
Female. 19 years old. Non smoker/drinker. HPV negative. Stage 3 Squamous cell on the side of the tongue. Had lymph nodes removed and part of the tongue.

#148558 - 04/20/12 01:10 PM Re: Psychological Effects of Tongue Cancer [Re: kaitlynpropp]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho

You came to the right place for a pep talk my dear! I often say that the mental and emotional recovery from this disease is more difficult than the physical by leaps and bounds.

It is difficult after you've "seen behind the curtain" and have had to face your own mortality. Add to that having to cope with the effects of drugs and treatment, disfigurement etc...and it is a tall order for anyone. The smart thing is that you've found these forums, people who can relate to where you've been and where you are now and that's something no Dr or family member can help you with.

What this experience should teach you is that life is short, and life is fragile so live every moment. Show the people that you love how much they mean to you every chance you get, random dance to music (sorry I have young kids who watch iCarly), go on adventures, truly live life and know that the only thing that matters is your family and friends and the time you get to spend with them.

When you live in love, and go out and truly "live" life everything else seems to fall into place. Personally when I focused on those things and not what I look like now, or how vastly different my life is than before cancer (lost everything really), that's when I began being able to accept the "new" me. We have a choice everyday we are alive on how we choose to look at life and our situation, as I say, as long as I'm breathing I have options and one of those options is how I choose to view the world.

Surround yourself with positive, uplifting people, read inspiring books, watch funny or inspiring movies, listen to music that feeds your soul. All of these things I like to call "putting on your armor" that protects your spirit and your outlook.

There is strength in numbers, it's why we are here so never be afraid to reach out to those who can truly relate to where you are and what you've been through...we want to help smile

Keep your chin up tiger, you got this thing smile

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

#148612 - 04/21/12 05:16 PM Re: Psychological Effects of Tongue Cancer [Re: EricS]
LBB Offline
"OCF Canuck"

Registered: 03/15/12
Posts: 15
Loc: Ontario, Canada
Hi Tanya, I was 46 years old when I was diagnosed with two cancers. I was lucky enough to have caught both mine in early enough stages that I was treated with radiation only.
I am sorry that your journey has been such a tough one. But....YOU MADE IT!
I think it is okay to mourn the loss of the life you had, but like Christine said, there is no way to go back. Take the time you need to let go of your past and, head held high, begin looking to your future with your partner and your children.
My journey began almost three years ago and the emotional challenges have been, well, challenging. Eveyone is different and every journey unique, but you have found support here from people who have and are facing the darkness that this type of cancer is. Read their stories and they will inspire you. If something in particular is causing you fear or anxiety, bring it forward here and someone will likely have been through it and can help guide you to a better place.
It has helped me, first as someone on the outside just visiting and later when I made that step to say "I could use some help". You have found this place much earlier in your journey than take advantage of all that is here for you. Look at how many people already have stepped up to tell you that it will get better! And it really does!
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0
Age 46 at DX
RT June - July 2009

#148621 - 04/22/12 01:01 AM Re: Psychological Effects of Tongue Cancer [Re: LBB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
We just had this conversation at dinner tonight. My husband went back to work in January. He works 3 weeks on and is off/home for 3 weeks, but he's tired and he looks it. The new normal sucks. He wants his life back and so do the kids and I!! But this is what we have and we will make the best of it.
You are not alone. Stay tuned in here. We truly lift each other's spirits!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14


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