Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#152248 07-19-2012 12:25 PM
Joined: Jul 2012
Posts: 47
curly Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jul 2012
Posts: 47
Hi there,

So, I am 37 years old. At 24 and 25 I had Stage I Tongue Cancer. Both times had them removed surgically and that is it. Well, 12 years later I am now Stage II, need to have part of my tongue replaced by skin from my wrist and will probably need radiation. Never smoked, drank, chewed tobacco. It is interesting because each incident has followed a period of great stress for me. I guess this is a wake up call that I need to take better care of myself. Pretty scared. Very happy to have found this board!


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
curly #152253 07-19-2012 01:12 PM
Joined: Aug 2011
Posts: 78
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Aug 2011
Posts: 78
I am so sorry you are having to deal with this again. I was 38 at diagnosis. Drank a bit & smoked on occasion, but less than the number of cigarettes they determine for one to be a "smoker". I had precancerous cells & 4 surgeries in the 10 years prior to my cancer diagnosis.
I has surgery in Sept 11 & finished up my radiation by the end of the year. It was difficult- but I have resumed a very normal life with a few "new normals". I am 7+ mos out & feeling great with clean scans & check-ups.
I was also treated in NY by a great team at MSKCC.
I am very suspicious that pregnancy related hormones caused the cancerous change... I'll never know for certain, of course, but it's definitely my feeling.
Good luck to you. This wonderful group of folks can help you & guide you. The support offered on this site is an absolute gift!
Stay strong! You will win this fight!!

Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
curly #152264 07-19-2012 08:42 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Curly! So sorry to hear you are going thru another recurrence. Glad you have found OCF to help get you thru everything. You will find tons of info and support both here and on the main pages.

There are many members who are HPV- and are non tobacco users. Some people are predisposed to getting cancer. In my opinion your mouth area could just be the weakest spot on your body so thats where you get it. It could be genetics or who know what kind of environmental issues, trauma or a million and one other reasons for the cancer to grow. No matter why you got it the important thing is to get rid of it and then you can move on with your life. Im another 3 time oral cancer survivor.

If you are not already being treated at a NCI cancer center I would suggest checking it out. They use a team approach to get all the specialists on one page and discuss your individual case. They are more experienced and see more oral cancer patients.

While you are waiting to begin everything, I would suggest focusing on your nutrition. Eat everything you can now and drink plenty of water. You want to go into this in good shape and have no regrets or cravings for certain foods. Your sense of taste will likely change for several weeks possibly months where foods you love wont taste like what you would expect. Dont worry yourself about calories or gaining weight, its ok to add a few pounds especially if you are on the slender or average size. Its not easy going thru radiation especially after having tongue surgery but it can be done and the better your nutrition/hydration the easier you will get thru this.

Best wishes with everything.



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
curly #152269 07-20-2012 04:10 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hello... You and i are very similar - except for age... I was older when diagnosed at stage two. Id had a problem with my tongue for years before hand though - blessedly it didn't start to move until after they biopsied me (from0 a 1 lymph node in record time). The surgery I had is exactly as you described it. But I had 40 lymph nodes removed as well. The surgery is not a bad recovery usually just several weeks but radiation has a lasting impact. Though it's hopefully curative. Good luck.. I'm almost 15 months past radiation, and doing okay. I think being a non smoker, non drinker, etc... Definately aids in recovery. Good luck with your surgery.


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
curly #152303 07-21-2012 06:59 PM
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Dear Curly,

I'm sorry that you are dealing with this beast yet again, especially having started out so young.

My surgeon told me that "Usually A + B = C, but sometimes A + B = D, and you don't know why.".

That was (and still is) difficult for me to accept. I want to know WHY and HOW I got my cancer, but that's not the way science and medicine always works. Sometimes, it's just the perfect storm and you end up an oral cancer patient, without having any obvious cause.

All of that being said, I am very glad that you found us! I wish you the very best and putting this disease to bed for good! Please keep coming back for support. There are wonderful people here, with a wealth of knowledge, experience, and hope. You can do this! It won't be easy, but it's doable. Life can be good on the other side of treatment.

Take care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #152334 07-23-2012 12:46 PM
Joined: Jul 2012
Posts: 47
curly Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jul 2012
Posts: 47
Thank you so much. I am scared, particularly about radiation. I just had a close family member pass away two months ago, so for me I do think stress has had alot to do with it. They are giving me a trach as well during my surgery which I am not too thrilled about.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
curly #152338 07-23-2012 03:16 PM
Joined: Apr 2012
Posts: 60
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2012
Posts: 60
Hi Curly,
My cancer was very different but I just wanted to say that I feel stress causes alot of illnesses. I also had a trach and for me that was the hardest part of all. I was elated when I got the trach out. The radiation is harsh on the body and does have long lasting effects. But everyone is different and treatment is leaves different effects on each of us. I want to welcome you also to this site. I have gotten so much out of it I can't even tell you.
Robin


10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
curly #152339 07-23-2012 03:51 PM
Joined: May 2012
Posts: 114
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Hi Curly,

I personally can not speak to what you are going through, or will go through with surgery, but having been a caregiver to my mom during her battle with oral cancer, I learned a lot. She was very scared of the trach as well, and while it took a day or two to get used to, she did very well with it. Do you know how long you will have it? My mom was lucky enough to have it taken out before going home, it was removed about a 8 days after surgery, and it healed pretty quickly once she was home.

When is your surgery scheduled for?



Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
curly #152353 07-23-2012 09:43 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Ask for a Possey Muir valve trach. I am not sure who the right person would be to ask. Make sure you tell your doctor and also their nurse plus every single person you meet at the hospital tell them about it too.

A Possey Muir valve trach will allow you to talk. I know you will struggle due to having your tongue operated on but if its at all possible for you to talk with this type of trach you will be able to. I had one when I had my mandibulectomy and I was able to speak while I was in the hospital. i didnt have any of my tongue worked on but I had 1/2 of my lower jaw removed. I felt much more relaxed knowing I could speak up when I needed to instead of having to write things down. I think this would be helpful to you also.


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
curly #152357 07-24-2012 12:25 AM
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Feb 2007
Posts: 790
Hi Curly!

Welcome to the club but I really wish you didn't have to be here!
I was diagnosed at 33 and now I am 39. The surgery is tough and teh treatments are brutal but you will get through it. The trach wasn't fun - and I was also estatic when it came out. I understand your anxiety. Its doable though. Get lots of pretty scarves and once the swelling goes down they will remove it.

It will be hard for a little while but you will figure things out - Your body mind and spirit will adapt and adjust.

Stay strong and positive and try to just let go and let the Drs. do thier thing to make you well again and get rid of this awful disease once and for all!

Life will be good again!! Promise.


KATE

Last edited by misskate; 07-24-2012 12:26 AM.

Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5