#85437 12-05-2008 06:04 PM | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I am 29 and was diagnosed with stage 1 tongue cancer. From what I hear I am lucky but I have had four surgeries and we all know how painful they are. I can't look at Ensure anymore. Right now my doctor says all looks ok but I constantly have pain on tongue and I worry all the time. Does anyone have suggestions on how to handle this waiting game?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | YIKES! What is up with all of us young'ns! My only suggestion for handling everything is try and get back to normal as much as possible and continue on with life. Don't let cancer take over your life! When were your surgeries and have you had any other treatment as well?
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I've had a total of 4 surgeries since March 2007. They say mine can be treated surgically so no other treatment has been recomended. I've had 2 opinions and they both said the same thing. I'm just wondering when they will stop needing to see me every 3 months. I also had a panic attack in Sept over this and that's just another hurdle. The emotional part is harder than the physical. Do you find that also?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Suzanne,
Are you being treated at a Comprehensive Cancer Center? In other words, who is 'they?'
A schedule of three month follow ups is pretty standard. And yes, the emotional is far more difficult than the physical. You might want to seek out a Cancer Survivor's support group in your area. For someone as young as you are, there are so many issues to deal with as you move forward with your life. Either a support group or a therapist who deals specifically with Survivor's issues might be helpful.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Sorry:) "They" are my doctors at a cancer hospital near my house. I just want to not be scared anymore. I actually just started seeing a therapist in Sept. She does not specialize in cancer but I find her to be helpful. I'm also getting married in March. I'm not sure that stress is helping either!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | For me, the only cure for the fear was/is time. I was treated for a Non-Hodgkin's lymphoma when I was 28 and it took years for me to not worry that every little thing that went wrong with me might be a sign that the cancer had come back. Good for you for finding a therapist, and honestly, I can't imagine how hard planning a wedding would be in addition to all of this! Yikes.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I agree with Margaret, only time is going to help - I'm no expert at this though, since my surgery was only a little over 6 months ago. I'm the type of person who doesn't have a care in the world so it takes a lot to get me down - I bounce back quickly. I just look at everything as a phase of my life and try to get the most out of everything and that has helped keep me positive through all this. You have your wedding to look forward to now so enjoy that! I was married two years ago and my husband has been amazing through all of this. Surround yourself with strong, positive people and that will help with the anxiety. I do freak out some whenever something unusual pops up, so I totally understand - remission is the hardest part because of the paranoia! And, at least you get to go to your doctors every three months - I see my ENT every 6 weeks!!! Haha, but that is standard and eventually you should get to every 6 months.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | When one gets a second opinion make sure they are independent from the first.
I'm sorry I find your message a little vague, would you be able to elaborate a little more about your process. Although, it sounds like you caught your cancer very very early. I suppose the four surgeries confuses me a bit...and that's easy to do! LOL
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | You can reduce the stress of a wedding significantly by eloping!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Suzanne:
Welcome to OCF. Here you will find its a wonderful resource for questions. Please give a little more info about your history. It helps to understand where you are coming from better.
What part of Jersey are you from? There are alot of members from NJ and I grew up there.
If you are seeing a therapist, then you have made a very good choice. Cancer can really beat you up and many will require some therapy to get thru it. Alot of times survivors also need some anti anxiety meds. Its very common, nothing to be ashamed of at all. Check with your doc, let them know how you feel.
ChristineSCC 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  | | |
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