| | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) |  "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Glad you got your appointment moved up. Denial won't make it go away but I can understand your fear. Steve is the king of denial, took him 12 months to see a doctor and then ended up with advanced scc. You don't want to end up in the same boat. It may be nothing (I will be hoping and praying it's nothing) but if it is early detection is the best thing. So be strong girl, you can and will get through this no matter what the outcome.
I will be thinking about you all day the 25th, which I think is Tuesday here. Not 100% sure as can never work out these time zones so will make double sure I'm sending good vibes by thinking of you the 25th and 26th Australian time xoxo
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you Wendy and Jerry....I am so scared I just don't know what to do. Monday seems so far away. I wonder how I was going to wait to 2/8?
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I think a lot of us understand that terror for sure. You know you have to go thru it but really...could we just act like it isn't there??
Kind of like facing something at your desk that is a PITA...you just play solitare on the computer instead.
Hang tough girl....we are hoping for good news.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Suzanne. Glad you got the appointment moved up. I know I would be scared to but worrying about it would also drive me nuts. Sending all my positive thoughts your way. Hope everything turns out o.k.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | Having just gone from the waiting side to the known side I can identify with the pain. The worry just zaps your energy like nothing I have ever experienced. I slept hours, read for hours I finally gave up and spent hours playing bedazzeled because if I was doing anything else the fear was all consuming. But what I haven't mentioned is that they did not premedicate me for one of the two PET Scans, I am allergic to IVP dye. How was I supposed to know that and I was not happy to be sent home Friday half finished. I was on the phone Monday AM and while I am ALWAYS pleasent the squeeking wheel gets the oil is absolutely true. I made 10 different calls to everyone I had a number for and some people got 3 calls before noon. I had that 2nd test yesterday at 8 AM and made sure the Doctor had the results for my 11:30 appt. There was no way their mistake was going to leave me waiting another hour.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Well I'm happy your waiting is over...you're right..it just zaps your energy. You had me laughing at the bedazzeled..I play Cradle of Rome on my DS all the time!1
Welcome to OCF...I see you are a newer member...I hope you find some good friends here.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Well, I had my MRI today. This was my first for OC so I was not ready for all the stuff that would be over my head and be hooked to the table to keep me still. I looked like Hanibal Lector from Silence of the Lambs...at least that what the tech told me. I;ve had MRI's but they were not for my head. Anywho...I guess I now have a slight idea of what the table/mask is like for radiation. From what I can tell the mask is a much closer fit..cheers to those of you who handle that with such grace.
So...the MRI was negative. Totally clear and nice. My doctor smiled as much as I did which was great. I really like her a lot. She said the radiology department is going use to MRI for the radiology students so they can see an example of a clear one. That is all good news and the relife I felt was amazing.
I'm still having my biopsy on 2/2/2010 to check out my oral cavity as a whole but she will focus on my tongue.
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 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | That is the best news I've heard all day. I've been thinking about you all day today and I was so hoping the scans would come back clear. Fantastic news my mate Suzanne x
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you all:)
Wendy...I love that we can me mates!!! How fun!!! We don't use that word here except when I go to dinner to Outback Steakhouse...LOL
My nerves have definitly settled a lot. Still a tad nervous for the biopsy but just knowing my neck is free and clear is AWESOME:)
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:)
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