| | Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Aug 2013 Posts: 33 | Hello everyone,
I have been fighting stage 3 tongue cancer for 3 years now. Within this last month I saw something on my tongue once again...and when I had a biopsy, it came back positive once again. It is in the same area as my last tumor and not sure of the stage yet. On the 11th I will have the rest of the half of my tongue out. I am freaking out! One because of how I am going to talk after...I am a mom of 4 and need my voice! Also now I am terrified of dying from this since it came back so fast. I dont want to die. I know the stats are bad..but I really want to beat it. I cannot do any more rads and they say they do not want me to do more Chemo and I have no idea why. I just want to throw all I can at it to make it go away. I have such dark thoughts and need some kind of light to reach for. Please, if anyone else has had this happen and is doing well can you let me know? I just need some reassurance. Cancer sucks!
Age 36 Mommy of 4  Diagnosed 8/5-tongue cancer T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive Path report all clear margins! 11/5/13- enlarged taste bud and mild Dysplasia Surgery planned for 11/12 11/12 cancer cells removed Staged increased to stage 3. T3N1 Chemo and rads started 3/4/14 33 rads and 6 chemo Peg tube 3/7/14 37 radiation and 8 chemo treatments Completed treatment 4/25/14 recurrence 12/1/15 surgery for Hemiglossectomy 12/11/15
| | | | | 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 | Im so very sorry you are going thru this again! Ive had the same horrors of being diagnosed 3 times within 3 years. You are so right... Cancer really does suck!!!
Try your best to focus on what is within your control. Anything else will happen weather you want it to or not. No sense in weighing yourself down with unneeded extra stress. That only makes things even worse and can practically paralyze someone with fear of the unknown or the "what ifs".
Do your very best to hang in there. I know its not easy. Is it possible to locate a therapist at your treatment center to help you manage this? Someone who primarily specializes in helping cancer patients and caregivers?
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 | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Theresa,
I also had a recurrence (same location) just at about 4-1/2 years after surgery #1 (and this was post-RT). Believe me I was scared, and ended up going for multiple opinions, and the recommended treatment varied greatly! I ended up being treated at Johns Hopkins in Baltimore with relatively minor surgery! A year later I ended up with dysplasia (same location), and had surgery again, and have been in the NED category every since. It's been 10 years since my first surgery and 4 years since my last.
I posted about my recurrence on the forum. Click on my name, and select View Users Posts, and then Topics Created, and look for the posts in 2010 and 2011.
If I can answer any questions, just ask. Wishing you the best!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 66 | So sorry you have to deal with this. Have you gotten a second opinion? Looked for experimental treatments? I have a young child and know the feeling of being scared and wanting to care for them. You will find a way, keep going forward and get the help you need with the kids. I take ativan when I am super anxious. Ask for something if you don't have it.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
| | | | | Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2013 Posts: 33 | Thank you all for your replies. I did get a second opinion and it was the same, so still having the surgery on Friday. Scared out of my mind! But I want to get it over and done with so I can move on and enjoy my babies. I just want to beat it. I need to see my kids grow up!
Age 36 Mommy of 4 Diagnosed 8/5-tongue cancer T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive Path report all clear margins! 11/5/13- enlarged taste bud and mild Dysplasia Surgery planned for 11/12 11/12 cancer cells removed Staged increased to stage 3. T3N1 Chemo and rads started 3/4/14 33 rads and 6 chemo Peg tube 3/7/14 37 radiation and 8 chemo treatments Completed treatment 4/25/14 recurrence 12/1/15 surgery for Hemiglossectomy 12/11/15
| | | | | Joined: Feb 2016 Posts: 13 Member | | Member
Joined: Feb 2016 Posts: 13 | Theresa, I just saw your post and I wanted to know how you are? How is it going?
1/11/16 Parotid Tumor Removal
1/14/16 Mucoepidermoid Carcinoma Dx Stage 2, Low grade
1/29/16 Tumor Board agrees 30 IMRT RAD
2/12/16 PET says no MET, but "bilateral tonsils reactive"
2/17/16 RAD treatment began
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