#81400 10-02-2008 03:17 AM | Joined: Oct 2008 Posts: 3 Member | OP  Member
Joined: Oct 2008 Posts: 3 | This is my first post after what seams to be an eternity getting the diagnosis for Tonsil Cancer.
It all started in May of this year after a trip to my child hood home to purchase a retirement home. Now after 4 months of many differant ENT's the MAYO Clinic has pined this down to Tonsil Cancer. I'm not looking forward to the treatment plan but I feel with Gods help, great Doctors and support from forums like this I will make it through.
I have read lots of postings on here and so far this is one of the best places to read how others have coped with OC.
Chemo was Cisplatin, Karatone and my pump filled with the 5FU, 7 wks more chemo and 35 Rad treatments, with again negative results. Now a bilateral neck dissection with removal of my left jugular vein and lots of lymph nodes on both sides. As of Feb. 2010 I feel pretty good, scans have been clear.
| | | | | 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 | Welcome to OCF Dave!
You will find lots of support here to help guide you thru your journey. There are alot of very supportive people here that will answer your questions. Its a long and difficult journey but it can be done.
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: 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 | Were you tested for HPV? Are you/were you a tobacco user? What's your age? Why do you think it took so long to Dx you? Why is it taking so long to begin Tx? Are they removing your tonsils? And if no, why did they say no?
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome, Dave, and best of luck. I too had tonsil cancer which took over 2 mo.s to pinpoint the source. It's hard to find as the primaty tumor is so small. The only way we knew something was wrong was the 4.5cm lump on my neck. They did not remove my tonsils because, they said, the radiation would just burn them away. Anyway, after 7 wks of c/t and r/t I'm cancer free and I'm sure you will be too. It's a rocky road but, you want to be able to enjoy retirement, right?
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Oct 2008 Posts: 3 Member | | OP Member
Joined: Oct 2008 Posts: 3 | Thanks to all for the support and reply. My diagnosis was confirmed and treatment is being done at the MAYO Clinic in Rochester. I believe the Dx took so long because when I first approached my Doc in California the radiologist read the CT scan as a "carotid body tumor" and not cancer. And as luck would have it that type tumors protocol is no biopsy. So if the radiologist would not have been so bent on it being a benign carotid body tumor, then maybe treatment would have been faster.
Luck came back when my second ENT doc stated the he strongly believed it was Tonsil cancer and set up the appointment at MAYO. Within a few hours at MAYO it was confirmed to be Tonsil Cancer. I had the option to have all of my neck lymph nodes and tonsils removed or to start the chemo then radiation and chemo, with luck no surgery will be required.
Lots of other items had to be corrected and checked out before a treatment plan could be advised; like other biopsies of "hot" lymph nodes in other parts of my body per PET Scan, oral surgery to correct dental problems. And of course healing from all of the other pokes and prods before we could get down to serious treatment.
I feel very confident the folks at MAYO will fix this and I hope to report back to the forum in a few months that m first PET is negative after treatment.
God Bless to all, Dave
Chemo was Cisplatin, Karatone and my pump filled with the 5FU, 7 wks more chemo and 35 Rad treatments, with again negative results. Now a bilateral neck dissection with removal of my left jugular vein and lots of lymph nodes on both sides. As of Feb. 2010 I feel pretty good, scans have been clear.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Welcome to the OCF tonsil cancer club. Good luck through all this, please check in with us more often as you progress through the process. I have found after monitoring the board for years, that no one gets through the whole process without something going bump, and some complication occurring. I hope that the people here will be a great sounding board for you as you inevitably encounter your various obstacles and difficulties Between all of our combined treatment experiences, we have been through it all, seen it all, and found the work arounds, and the anxiety reducing answers.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Dear Dave- I just celebrated 6 years end of treatment from left tonsil cancer! The docs took a few months to figure out mine too as I did not fit their protocols and they did not test for HPV back then. Be as agressive as you possibly can with your treatment and don't be afraid of the long term side effects of surgery, chemo or radiation (or as some say, the slice, burn, poison method of treating cancer). The quality of life issues I wrestled with when determining my treatment are well worth the pain and are not that monumental to live with after treatment. Just knowing you are doing everything possible to beat this disease is a huge mental plus to get through the bad days. And every extra year I get with my family are well worth the inconveniences of post surgery and radiation issues! You go for it with all your soul! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Hey Kris,
Congrats on the 6 years! That's something to celebrate!
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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