| | Joined: Aug 2013 Posts: 5 Member | OP  Member
Joined: Aug 2013 Posts: 5 | Hi. A week ago i had a marginal mandibulectomy with adjacent tissue transfer (got 7 teeth and top half of jaw bone removed) to remove cancer on gums on bottom right side of mouth. It is still unclear if it has spread at all. The pathology report from original biopsy came back with 2 opinions...one said invasive melanoma and the other one said in situ. Tomorrow I go back to see the surgeon to find out what other treatment he recommends after getting new pathology report back. I think he is going to recommend radiation therapy. I am scared....but I know I can beat this. I have wonderful friends and family who are very supportive. BTW, I had a kidney transplant 10 months ago after being on dialysis for 4 1/2 years!
Kidney Transplant 9/13. Immuno suppessed due to anti rejection medication. Dx: 7/13 Mucosal melanoma on gums below teeth on right lower side. 7/26/13 right marginal mandibulectomy w/ adjacent tissue transfer. Clear margins. Referred to medical and radiation oncologist re possible chemo/radiation
| | | | | 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! It sounds like you have been thru alot already. It would be a good idea to seek out a second opinion, if you are able to. A top comprehensive cancer center is usually the very best place to get treated. List of Cancer Centers
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: Aug 2013 Posts: 5 Member | | OP Member
Joined: Aug 2013 Posts: 5 | Hi. Thank you for the welcome. I am being treated at Stanford Cancer Center which is on the list. I am not sure my insurance will cover a second opinion somewhere else. I think the next place to be seen would be UCSF. I can look into this. Thanks. This is all a little overwhelming as I am sure you know!
Kidney Transplant 9/13. Immuno suppessed due to anti rejection medication. Dx: 7/13 Mucosal melanoma on gums below teeth on right lower side. 7/26/13 right marginal mandibulectomy w/ adjacent tissue transfer. Clear margins. Referred to medical and radiation oncologist re possible chemo/radiation
| | | | | 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 | I understand how its easy to get overwhelmed with going thru an OC diagnosis and surgery. It seems like it becomes a whirlwind of appointments and tests. Stick with us and we can help you with everything. Its important to learn about your disease so take some time and read like crazy here and also on the main forum pages. You want to be an educated patient so you will better understand whats being done.
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: 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 | Welcome and do try and educate yourself as much as possible. Write questions down as you go and take them to all docs. Do not presume that every doc you see is the best one for you. You wouldn't buy a car from the first dealer you talked to so treat yourself the same way. Good luck and we are here 24/7. You are now our family and we will see you thru whatever treatment you decide to have.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2013 Posts: 5 Member | | OP Member
Joined: Aug 2013 Posts: 5 | I am going to see the doctor at Stanford today. He is from Head and Neck Surgical Oncology at Stanford. He is the only doctor I have see since my diagnosis so I think someone else will be doing follow up. I am also comsidering going to UCSF for a second opinion. What copies should I be asking Stanford doctor for today? I will ask for a copy of the pathology report but what else would I need? I am a little confused about how these forums work. Should I now be posting on the treatment one since this one is the introduce yourself one? I have never participated in a blog of any sort so sorry if I am doing this wrong! Thank you for being here. It is nice to have a place to talk to people who have been through similar issues.
Kidney Transplant 9/13. Immuno suppessed due to anti rejection medication. Dx: 7/13 Mucosal melanoma on gums below teeth on right lower side. 7/26/13 right marginal mandibulectomy w/ adjacent tissue transfer. Clear margins. Referred to medical and radiation oncologist re possible chemo/radiation
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You can stay with this post until it runs out of steam or you can switch to a more descriptive Forum, your choice.
Best to ask UCSF what they would like you to bring.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Welcome, Galana! I'm really sorry to hear that you have to deal with this, after undergoing the kidney transplant!
How far along is your recovery from that traumatic event?
It's a good idea to read all the other intro threads, at least all on the first page. From them, you will learn things to be considered, that you won't find elsewhere.
You're in good hands here (so to speak,) at least from the BTDT side of things, and those things that you learn will work very much to your advantage in getting through the jungle ahead.
I wish you the very best of luck!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Aug 2013 Posts: 5 Member | | OP Member
Joined: Aug 2013 Posts: 5 | Thanks for the info. My kidney transplant was 10 months ago. The immune suppressants I am on (and will be on for the life of my new kidney) make things complicated for my cancer treatment. The surgeon says preliminary pathology report shows a clear margin which is great, but they want me to talk to the radiology oncologist and a medical oncologist to see about possible radiation and chemo therapy to prevent reoccurrence. I figure that I should wait until I have these appointments before I try to go to UCSF for a second opinion. Does that sound right?
Kidney Transplant 9/13. Immuno suppessed due to anti rejection medication. Dx: 7/13 Mucosal melanoma on gums below teeth on right lower side. 7/26/13 right marginal mandibulectomy w/ adjacent tissue transfer. Clear margins. Referred to medical and radiation oncologist re possible chemo/radiation
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | I wish I had enough information to offer an intelligent response to your question, but since an uninformed opinion could do more harm than good, I'll keep silent and see what others who are better informed have to say. Sorry.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Galana, I went through the exact same appointments, and they gave me the option of doing rads or not. I chose not for various reasons (it was a surprisingly hard decision to make).
I donated a kidney to my dad 11 years ago, so while I don't have the immuno-suppressants, I was very vigilant about everyone knowing about potential meds, etc., that could damage my one remaining kidney. I suggest you bring someone with you to all the appointments as well as a list of your meds - an advocate and second set of ears is always helpful.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | 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 | It could take weeks to get into somewhere for a second opinion. Start making calls now to book your appointment. If you wait then you could be putting off your treatment, so dont delay.
Good luck!
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 | | |
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