| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I'm with you Curt. I could not have made it without this OCF family. I'm still in the post treatment stage, 6 days out from last rad tx, and still asking questions or reading through the forum for answers.
I'm also with Bart and chem teacher, have those questions ready. Half of my questions were because I already had the knowledge from OCF. I was totally prepared for what may or may not come up. Again not bec of what they told me, but because of being a part of this family.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | 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 | CWB,
Good luck with the path and do tell us what they want to do next.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Oct 2013 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2013 Posts: 33 | Everyone,
I had my stitches removed and my scar doesn't look too bad. The pathology report didn't come back as good as I wanted. They removed 4 lymph nodes and two had extra capsular spread. I was hoping the cancer would have been contained in the lymph nodes and future radiation chemo could have been reduced. I will find out what my actual treatment plan will be on Tuesday. Trying to stay positive!
Last edited by CWB; 10-24-2013 05:24 AM.
Curt
Age 43, nonsmoking, social drinker
Left tonsil cancer
SCC HPV+16
Stage IV
tonsillectomy, robotic radical tonsillectomy and neck dissection
4 of the nodes removed had cancer. 2 had extra capsular spread.
3x cisplatin 33x rad 11/18/13
Completed treatment 01/08/14
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: 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 | Even with the 2 nodes having cancer, you still have a very good chance of having the cancer completely eliminated. Stay busy and do everything you can to bounce back from the surgery.
There are so many things to do between now and when rads starts. Do your very best to eat all your favorite foods now before the next phase begins.
Get a blood test that includes thyroid and testosterone levels. See your dentist to get your check up and flouride trays made.
Make lists of everyone who offered to help and all their contact info. Even small jobs like picking up meds from the pharmacy when you arent feeling well can be a big help. Im sure there are many people who want to help but dont know what they can do. If people tell you that, just say you will put their name and info on a list and when the time comes you will let them know.
This last bit is the hardest one. Go out and live your life. I know its not easy to put this aside and act like nothing is going on but it really is in your best interest to stay active and not dwell on your diagnosis and the nodes. When I was given a very small chance of survival after being diagnosed for the 3rd time in 3 years, I became even more determined that I was going to live it up and "go out with a bang" if it was to be my time. I took my children everywhere and made all kinds of good memories with them. I was adamant that they would never think back and remember their mother as being a scared, crying mess. By focusing on making memories with my family, the time passed quickly and easily. We had loads of great times and I went into that 10 hour surgery with no regrets. If I had to do it over again, I would do the same thing. Im telling you this to hopefully get your to understand that cancer is like a thief.... it steals your time away from you and zaps your strength. Dont let it do that, go out and enjoy yourself.
Best wishes!
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Ditto what Christine said. Try not to worry. Hopefully with most of it being excised the rads will pick up any potential left overs.  take care
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
| | | | | Joined: Oct 2013 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2013 Posts: 33 | Thanks for the encouraging words I appreciate it. I didnt explain it very well. I am sure they took out a lot of nodes but only 4 had cancer and two of those had the extra capsular spread. So not what I wanted but I will find out next Tuesday what the plan is. I do feel little more prepared after reading everyone's posts. I am tying to stay busy. I went to the movies today and I have a dinner date tonight with my family.
Thanks
Curt
Curt
Age 43, nonsmoking, social drinker
Left tonsil cancer
SCC HPV+16
Stage IV
tonsillectomy, robotic radical tonsillectomy and neck dissection
4 of the nodes removed had cancer. 2 had extra capsular spread.
3x cisplatin 33x rad 11/18/13
Completed treatment 01/08/14
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Sorry to hear the biopsy results. Dang HPV got me too. Same age same side. Based on my year on the forum it looks like chemo and rads. The treatment is brutal, but doable. Were coming up on winter and typically there is a lot of stuff to do anyway. Dec and Jan, you may not be feeling to good, so get done what you can now, and line up help as Christine suggested. Keep you chin up, and if you can add a few lbs, it will help. Keep posting and ask questions.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2013 Posts: 54 | Curt. My thoughts and prayers are with you. Pack on some pounds.....get your Christmas Shopping done.....line up some helpers and mentally prepAre for battle. YOU CAN DO THIS!!!!! We are all here to support you.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | | Joined: Oct 2013 Posts: 6 Member | | Member
Joined: Oct 2013 Posts: 6 | Hi Curt,
what symptoms did you have before diagnosis and what doctors did to find it ?
Wish you THE BEST in the treatment !
Andrew | | |
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