| | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Sandy,
The logistics go right out the window when patients are not getting the best treatment available. There are a hundred horror stories right here on this site about miss-diagnoses, bad treatment, wrong treatment, not enough treatment, too much treatment......
I drove an hour each way to my cancer center. I got two second opinions from CCC's at Penn and U of Michigan. I almost moved to Ann Arbor to be treated at U of M but they said I would get the same treatment at the facility an hour from my house.
You definitely want the folks at Moffit to look at you. They may recommend a place closer to you to get your treatment or you may elect to go with them, but either way you will know you have been seen by the best. If you ever have a doubt about a local treatment you will be able to check back in with the best.
Keep in mind that the core intense treatment for this disease should only last about two months. After that there is a good deal of follow-up but not an intense schedule.
This is what I was prepared for, taking two months out of my life to save my life.
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: May 2010 Posts: 4 Member | | Member
Joined: May 2010 Posts: 4 | Don't know how to jump in but i am doing so. You can see from my signature a brief synopsis of my plight. I've already been through hell with my ovarian cancer (beaten all the odds) and then when I found out that the maintenance drug (99.999% sure) i was on on may be the cause for the H&N ca you can imagine how devastated i was. Once diagnosed there was a 3 week wait for surgery when one of the tumors tripled+ in size changing surgical plans the morning of. A flap was needed. Great - all the margins were clean just do a little radiation to be certain. Surgeons were confounded because i healed so fast - i was home in a week's time. However I overexpress epidermal growth factor receptor (EGFR) so the radiation did not work. Now I am starting chemo (taxol & Erbitux) and radiation all over again. My mouth has only partially healed from the previous 24 treatments. I would take a recurrence of ovarian cancer any day - this is hard to look at, hard to speak with, hard to eat with as you all know. I'd rather not see it nor feel it. One tumor started oozing this morning.
11yr stage 3C ovarian ca -maintenance doxil cause of H&N
field cancerization- 2sm (palate & right cheek) 1lg (left cheek)
aggressive tumor growth before surgery- Feb24- flap surgery clean margins
24 IMRTrad- 2 new tumors- jaw & under chin
rad hiatus- taxol & erb w/10rad-infection, now chemo only
| | | | | 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 | Sandy,
Call me Monday after say 8 am at 727-322-5669.
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: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Sandy, I can imagine how scared you are. There's nothing quite like the feeling of being told you have cancer and I surely wish you'd never had to hear those words. But since you have, please take a deep breath. You're among friends here and you're getting the best advice. And David's offer to help you is amazing. Talk about above and beyond!
You'll get the help you need, you'll have the treatment... it'll be tough, no question... but before too long you'll be coming through the other end and beginning the process of putting it all behind you.
Please keep us informed and ask all the questions you can think of here, no matter how strange or insignificant or stupid they may seem.
Courage!
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2010 Posts: 18 Member | | OP Member
Joined: May 2010 Posts: 18 | You guys are amazing. David I will call you on Monday.
Just a side note. My doctor had prescribed xanax when I was first suspected of cancer. I don't usually take this, but since I have been so wound up - tried it today when I didn't have to work. Well, it did calm me down, made me sleepy enough for a short nap and afterwards had a sense of well being. I can't tell you how good that felt. Please keep the good vibes coming.
Sandy | | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Alison,
Sorry to hear your latest news. You have come to the right place to get the advice only us patients can give regarding oral cancer. The radiation is a bitch as you well know and almost all here have had strong doses to the oral cavity so we have some good tips on how to get through the eating, drinking pain stuff.
You should start your own thread by clicking on the "New Topic" tab at the top of either Introduce Yourself or Currently in treatmentforums.
I am relatively new here at 9 months. We have some old hands here that can help you get through the tough parts. We have a forum for reoccurance also.
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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Kelly -
You really put it in perspective! Great thought. I'm going to attach it to my wall.
Thanks -
Marlene
"This is what I was prepared for, taking two months out of my life to save my life."
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: May 2010 Posts: 18 Member | | OP Member
Joined: May 2010 Posts: 18 | Hi all,
My first post was on 05/21/2010. I met David today on the phone. He has arranged for me to meet with a top radiation oncologist (sp, I'm sure that I will eventually get it right) at Moffitt this Friday for a 2nd opinion. I hope I don't embarrass him, but I am so amazed that someone I don't even know would do that for me. (And from what I understand, for many others). I am so grateful that I found this board.
Best Regards,
Sandy | | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Sandy, Sorry to have you join our group. I am so comforted to know how David has taken you "under his wing" May his kindness bring you comfort & calmness. I was spared surgery because of my 2nd opinion! I wish you all the best. You can do this, the strength will come to you to persevere and be grateful for all the medical advancements available to you. You have a new family with us all here, so please keep us posted of your progress.
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | 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 | Sandy,
We met on May 21, your first post and believe me you won't embarrass me. Hard to mess up being a cancer patient. lol
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.
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