Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#115899 04-24-2010 02:14 PM
Joined: Apr 2010
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Apr 2010
Posts: 45
This is my first time posting. Although my concern for a recurrence is very real and ever-present, I have been cancer free for 8 years. I hope that helps the newly diagnosed. I have been reading many of your posts for over a year but decided that I wanted to get to know some of my fellow survivors. I've actually felt rather sneaky reading your heartfelt thoughts, fears and concerns that I have had as well. Thanks to all of you for providing so much encouragement, hope and practical advice on dealing with a little understand cancer-we really are in it together!


2002 - SCC - T1N0M0 - ever vigilant
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
welcome, and seeing others make it as far as you have gives me a little hope. As I am always worried about every little pain.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Apr 2010
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Apr 2010
Posts: 45
Hi and thanks for the welcome - you were the first to respond to my intro! I think I was reading one of Brian Hill's responses to others asking "Where are the long term survivors - are there any!? And he said that though there probably aren't as many as we'd like (and that's why we're here to support each other using this forum) that there are long term survivors who have just moved on. I decided that we can never afford to just move on - whatever life experience - and cancer is a "life experience" - we're dealing with - it helps to know that other people have come out on the other side. I look forward to getting to know other survivors who are just trying to make it through each day just like me and you! Make sure you trust your medical team - my oral surgeon was a pitbull and was not well liked because he was 100 % pro-patient. I'm living proof that he put me first. Make sure you feel confident with those providing your treatment and follow-up


2002 - SCC - T1N0M0 - ever vigilant
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Welcome to OCF and congratulations on being cancer free for 8 years. It would be great if you filled in the signature portion of your profile so everyone can rad about your diagnosis, location and treatment steps.

Anytime a new survivor comes on board it is very exciting. Unfortunately the fear of recurrence probably never leaves any of us, but on a personal level, I find I do think about it less often now.

I wish you continuing good health.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
I second, and then third Angelia and Jerry. 8 years... man! Given the rapid advances in medicine these days I'd love to hear how the treatment differed those few years ago, if at all.

Thanks for saying hello and congrats.

David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #115922 04-24-2010 08:34 PM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
I found this board in a specific look for survivors of oral cancer. After I was diagnosed, all I found was the normal stuff on the internet and I felt like I was doomed.

Then I found this site and I realized that i had a fighting chance. I also learned a whole lot about what was coming.

This site made me a better patient. Thanks for sharing your story. I'm six months out from treatment and can only imagine eight years! My son will be 21 and that will be something to see.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jun 2009
Posts: 138
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Jun 2009
Posts: 138
It is definitely an "upper" to hear someone with 8 years survival. Like Kelly, I was looking all over the internet and all I saw was words like, "Unfortunately the five-year survival rate for oral cancer is very low especially if it has spread to the lymph nodes." I felt nothing but doomed. I even considered just going to Sweden and New Zealand and any other place I've been wanting to go before I died and forgetting the awful treatment all together. That was until I found this site and saw all the brave peope who encouraged me to go to treatment and I could make it through. Angelia especially helped me because we started at virtually the same time and had a lot of similar issues. We private mailed a lot and we both made it, despite the fear of the dreaded mask and that awful feeding tube. I sure hope I can still write something on here in 8 years.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Bloop19 #115927 04-25-2010 05:29 AM
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
Scootersmom, welcome to OCF. Im glad you have 'shown' yourself. I love seeing posts like your about survivors. Eight years is a long time, congrats!!!!


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
Joined: Apr 2010
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Apr 2010
Posts: 45
Christine - thanks for the welcome. I probably had this for closer to 9 years but couldn't get my "dental professionals" to take this seriously. In his defense, he may never have been trained in identifying something suspicious, so I was very surprised at my outcome when I finally took control of the situation. After surgery, I was starting to "unhoard" everything I had collected over the years thinking the end was near. The mind can be very powerful working for or against you. I'm glad I got it under control - I would be missing some great stuff!! One day at a time...


2002 - SCC - T1N0M0 - ever vigilant
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 701
Likes: 1
Hi, Scootersmom,

Your eight years plus survival is very encouraging. Congratulations! And welcome to OCF.


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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