#95654 05-17-2009 05:05 PM | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi all,
I'm looking for some opinions and I know this is the place. I was diagnosed in March of 2007, have had 4 surgeries only once showed cancer (in April 2007) after that there were suspicious areas but they all came back as severe dysplasia. I have always seen surgical oncologists. My aunt used to be a cancer nurse and wants me to see a medical oncologist. What do you guys think about this?
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 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 | Suzanne, I have a huge list of doctors that I see. Have you ever seen an ENT? Thats who oversees my care. A medical oncologist is the one who administers chemo. Chemo by itself doesnt work on curing oral cancer.
Im not the most knowledgeable when it comes to doctors, I hope you get alot of responses. I would say see an ENT who is familiar with oral cancer.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Suzanne,
Is it possible for you to get to a comprehensive cancer center to be seen by a team? My initial appointment at Dana-Farber was with everyone; surgical, medical and radiology, and my treatment plan was determined by the consensus of all three disciplines. For my follow up, I now switch off - last appointment was with the surgeon, next will be with the medical oncologist and I saw my radiologist back in January.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 | An MO is just a Chemo guy and is just one part of a team that usually evaluates us OC types. At Sloan you will get to see all of the team so good luck.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Suzanne
A team approach is the best way to go. Often there are disagreements between my medical team (an ENT surgeon, MO, RO and head of nuclear medicine) that they resolve among themselves so I don't have to. I do confess though that I rely primarily upon my ENT as she has more empathy since her husband is an oral cancer survivor and she really understands the quality of life issues each treatment option poses. Still, sometimes I take my MO advice like this second round when I will start Carboplatin on Wednesday in preparation for the CyberKnife radiation despite no conclusive studies that it will help, I just do not want to deal with the "shoulda/coulda" self-recriminations if this Cancer comes back a third time and the chemo might have prevented it.
Your surgeon can pull together a team for you.
Good luck
Charm
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 | Hi all,
Thank you for your responses. After my visit I decided to stay at Fox Chase. I know I'm being fussy but I just didn't like the doctor there. I was asking him a question and he said "Shhh, let me finish" I just connect with someone like that. I know I should pick a surgeon for their hands not their personality but I can't handle rude. I was never that sensitive before but with this I am. Fox Chase says they have teams but I have yet to meet anyone besides my surgeon.
I go on June 1 so I will plan to ask some questions. She has mentioned that she has disgussed my case with others, so maybe that is my team..lol I feel like I should know this.
Thank you all....you guys are the best!!
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | MY Oncologist locally was going at it with the one I had at Ohio Stae James Cancer Center. LOL I overheard it a couple of times. It wasn't nice. But the local one was the right one and ended up treating me. THe one here saying I needed rads and chemo and the one at OSU saying no, I got it all. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Suzanne,
As you know I was treated at Fox Chase also and by the male half of the team. I had a consult with the radiation oncologist before my surgery. Based on the results of my surgery, he was in on the decision not to do radiation or chemo.
Perhaps the radiation oncologist was in on the decision making and if so, you should have been told. You should ask.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | My ENT had the bedside manners of a Lycan but he was the first doctor out of the first three I saw that said I needed a FNA of a lump in my neck which changed my life forever. I named him Dr Death and even though I decided to be treated at Moffitt 2 doctors later I won't forget what he did. He even visited me in the hospital near the end of my Tx just to check up on me with doctor number 4 which I thought was nice.
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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