| | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | Sorry to hear your diagnosis. I had a sore on the side of my tongue that got worst and hurt the biospy showed cancer. My ENT doctor had me in surgery within a week and the cat scan showed swollen lump nodes 7 were positive and removed stage 4. Then I had radiation and chemo. I felt comfortable with having all 3 things done to knock out this cancer. Radiation was the hardest thing to get through. Every case is different. Take someone with you to your appointments it can be overwhelming and take notes then sit down and decide the best treatment options. Don't do this alone. Keep in touch !
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Thank you Tammy. Did you say you had surgery and afterwards the chemo and radiation, if I understood it correctly? Does that put you at risk of the cancer spreading to other parts of your body to have the surgery first and then the radiation and/or chemo? I've just lost my husband in Feb. 2008 and I can't find it in my heart to tell my Mom. My son is a great help but he works all the time. I will ask someone from a church maybe or the cancer society when I find it here to help me. During my husbands illiness, he had enphysema for years, we lost our home and everything else, then I lost him, and now I'm dealing with this and it's a bit overwhelming. I am exhausted and didn't know where to turn until I found this website. Now I feel I can at least find some answers to some of my questions or know how to ask some important questions that will help me to make informed decisions.
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Tammy, when they did your surgery, did you have a neck dissection? If so, do you have to be incubated to have that done?
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | 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 | You just posted that your ENT hasn't done a biopsy yet?? Then how does he know it's cancer? I haven't met one doctor yet or heard of one, for that matter, that has the ability to visually determine cancer. A biopsy is NEEDED BEFORE YOU GO ANY FURTHER.
IMHO you need to run away from your ENT and into the arms of Emory or some CCC. This is your life and only you will have to deal with the aftermath of whatever you decide to do IF AND WHEN IT IS DETERMINED TO BE CANCER.
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | The American Cancer Society in your vicinity would probably be a big help with logistics and such...getting you to a CCC..a place to stay if you have to be away from home for treatment (they run Hope Lodges at a lot of CCC's - marvelous facilites)...care for your Mom, if needed. I would call them to see what they can do, but for sure, call (today) Emory's Head and Neck Clinic and get an appointment...they can most likely do your biopsy as well.
We are not being alarmists, but know the importance of a good diagnosis and treatment plan..you need the expertise of several diciplines(tumor board)to guide you to the best care and cure. These doctors use guidelines and their experience (because Head and Neck cancer is all they do day in and out)to stage your cancer (if it is really that) and develop a treatment plan. Once again, I know this is overwhelming and very scary, but you can do this...your life is at stake.
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: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | I was diagnosed with left tonsil and lymph node involvement 3 years ago. I had the neck disection after the radiation and chemo. My understanding is that if you are HPV+ the neck disection is not necessary. I was not HPV+ so had the surgery. I would be happy to talk to you anytime. Call me at 732-687-3518 anytime. All the best. Rob Jaffe
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | 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 | It is not a given that just because you are HPV + you don't need a ND. I wasn't tested for HPV until after my Tx was over and after months of my persistence and insistence. Moffitt, almost 2 years ago, told me that their thinking was that the Radiation is the only effective killer of my SCC and they saw no benefit of doing a ND to take out my lymph nodes (at least 2 were Dx as cancer) and wait for me to heal before they started the rad which they said should kill the cancer in the LN's anyway. They also said they could always remove a LN that wasn't cooperating after my Tx was over. I am also sure that their recommendation considered the size of my LN's as well. As far as HPV, a recent study has concluded that the HPV+ SCC is different from HPV- SCC and that it responds better to the conventional Tx and re occurrence is less likely. My RO told me shortly after that study was published that if he had known this he MAY have Tx me differently. Didn't ask him what he meant but I'm not sure I would want to be a Guinea Pig.
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: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | I totally agree David. Today my throat hurts so bad, and I take morphine for ruptured disks in my back, but it doesn't do anything for my throat pain much. I am going to make several calls today to find out who else I can see. Even my hair has an odor to it a day after I wash it. I think I have more problems than the ENT has a clue of. But he is definately one of them. Thank you for your advice. I must hurry and get more info. Thanks again, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Thank you Deb. I appreciate it.
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | I don't know if I have HVP. During a ct scan a small tumor was found on my uterus but nothing was said about that after the pet scan. I need more info from the Dr. for sure. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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