| 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 | Charm,
I believe you mean to say that you had 72 gys as each is expressed as 100 rads.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Thank you all so much for the feedback. I am so happy everyday that I found this site.
Anywho....I decided today I am going to Memorial Sloan Kettering for a 3rd opinion. I need a doctor who is going to take the bull by the horns and make some decisions. I'm not sure if I mentioned this but the day of my surgery (in hospital gown with matching socks, IV in, pee in cup and all) She asked how my pain was. At that moment it was fine, so I said it was ok. She said she wasn't sure if we should still do the surgery and what did I think. What did I think?!?!?! I think you're the doctor, you're the one that went to school for ages....can't you tell me if I should do it or not?!?!? So Ray and I both decided I should still do it. As it turns out she was happy we did it. What would have happened if I made the wrong decision? I feel like that is too much pressure. Has anyone ran into this? Am I too picky? I feel like this is something I should be picky about.
Last edited by suzanne98; 02-23-2009 05:24 PM.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Suzanne
I think it is something to be very picky about. You should be making the decisions for your treatments but based on the options given to you by the professionals. I am glad that you are going to Sloan. Even if you gain just the peace of mind of knowing that things are being done properly that is really something. The stress of this ugly disease is enough, then the stress of the medical bills and payment and how to live your life. What is not necessary is the stress of feeling like the doctor is looking to you for the diagnosis or treatment.
Even if you did stay at a Holiday Inn Express last night.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | [quote=Good1]Suzanne Even if you did stay at a Holiday Inn Express last night. Patty [/quote] Good one, Good1! Deb
Last edited by debandbill; 02-24-2009 06:33 AM.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Suzanne
First, I never heard of such shilly shalling on the part of a surgeon and you have every right to be disappointed in such an attitude. Good for you to muster up the energy and time for a 3rd opinion at Sloan Ket. I am impressed since it is so daunting a time in your life. And like all good CPAs, David is technically correct on the radiation nomenclature. I blame my RO still uses the old Rad scale (which even Wikipedia lists as "largely obsolete". ) Moreover, I would not have had to worry about a recurrence if they had given me 720,000 Rads, as that would have been beyond my lifetime warranty and resulted in an involuntary recall to the manufacturer.
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Well....I just spent an hour and half on the phone getting everything together for my appointment at Sloan. They will decide if I should see a medical oncologist or a surgeon. I'm no expert, but I think it's time for a medical oncologist. I've only see surgeons so far and see where I am?
Charm..you crack me up!!! I love the "Involuntary recall to the manufacturer"
Just like us here, the woman at Sloan that I spoke to was having a hard time understanding my case. She said "you had 4 surgeries?" in a tone that made me laugh. She said "Well what other treatment have you had" I told her none and we are doing Watchful Waiting. She thought that sounded pretty crazy. So hopefully I can get all paperwork to them asap.
I'm prety sure there is something I need to be doing for the wedding. I've been having "Wedding Nightmares" It's too funny.
Charm...I will be thinking of you tomorrow:)
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | Good Luck Suzanne! I will thinking of you!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Great news Suzanne!! When is the appointment??
As for the wedding - let's see - you have a groom? and a cake? and a dress? and a person to perform the ceremony? Your done.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | lol....I do have all of those things for the wedding. You are right...I'm good to go. I even have flowers, a DJ, a photographer and food!!!
I have to get my paperwork to SK before they make the appointment. I'm hoping to get everything together by the end of the week and make the appointment for after the wedding. Right now I am going to concentrate on the fun part of my life. Although talking to everyone here is fun too.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I would put comfortable shoes and undergarments ahead of the cake. Probably # 2 after the groom. Of course you will need that dress and someone to perform the ceremony.
Good luck with SK. you have made a wise choice, if only for your peace of mind.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
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