#88275 01-17-2009 03:07 PM | Joined: Jan 2009 Posts: 7 Member | OP  Member
Joined: Jan 2009 Posts: 7 | Hello, I hope I am in the right place to post. My daughter, age 43, had trans oral laser surgery on 1-7-09. Dx was Tonsil, T2, N1, Stage III. Her recovery from the surgery has gone well. Her follow-up appointment is 1-20-09 and I am anxious to hear the details and results of the pathology. I am on here first to learn all I can in order to support her the best I can. She and her husband haven't put research as a priority and I can understand that, as this is so new and overwhelming. But I want to learn all I can soak up. Another reason is that this surgery was the result of her second opinion. The first opinion of treatment was like being in a nightmare for all of us. (her husband and I included.) It was the 7 weeks of radiation concurrent with chemotherapy. They were so happy to get the second opinion and for her to be a candidate for this laser surgery, due to it being minimally invasive. I realize that, based on the pathology results, she will probably need radiation, and want to be prepared in my mind in order to support her better. I have been reading the posts on these forums for a few days now and find them very helpful and informative. I have also been reading the information provided on the OCF site and am grateful for so much information in one place. I have previously read and read as much as I could find on Oropharyngeal cancer. At the moment I don't have any specific questions, but probably will after Tuesday the 20th. I sure hope to connect with someone who has had this type of surgery or knows someone who has. So far, I haven't found that. Thank you so much for this opportunity.
mother of 43 yr-old female,
post-op Dx: SCC rt.tonsil,non-ker.type,poorly diff.T2,N2,MO,stage IVA
1. Transoral CO2 laser partial glossectomy
2. Transoral CO2 laser pharyngectomy
3. Bilateral neck dissections
4. Microlaryngoscopy
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Carol Marie,
Where has she been seen? If she has not been already, I would strongly recommend that she be fully evaluated at a comprehensive cancer center (CCC). I have not heard of the oral laser surgery. I was evaluated and received mulitple opinions through 4 CCC's; evaluated in person at Stanford and UCSF; further review and evaluation of all of my results by MD Anderson and Hopkins. While I make no claim to be a doctor, the traditional treatment I would expect her to receive would be chemotheray (likely Cisplatin) coupled with IMRT. This is the treatment I received at Stanford, while not easy, I am at full strength again and very happy with my life.
If you let us know where you are located in Missouri I am sure someone will know where the nearest and the best CCC's are located. This is a very important issue.
Welcome to the website. Sorry you need to be here but you will find the support to be sincere and caring and the information accurate.
God Bless.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Jan 2009 Posts: 7 Member | | OP Member
Joined: Jan 2009 Posts: 7 | Thanks for the welcome! My daughter is being treated at Siteman Cancer Center at Barnes-Jewish in St. Louis, MO. She and her husband, so far, are thrilled to be there. The treatment you had sounds much like what the doctors at St. Louis University Hospital proposed. I guess the reason you haven't heard about the laser surgery is that it is performed in very few places from what I understand. I was concerned that I hadn't found mention of it on this site; so it seems it is not widely known. I don't think there is any chance, at present, that my daughter and son-in-law would consider switching to another place for treatment. I don't know what will happen after Tuesday. We'll just have to wait and see. Thanks again!
Carol
mother of 43 yr-old female,
post-op Dx: SCC rt.tonsil,non-ker.type,poorly diff.T2,N2,MO,stage IVA
1. Transoral CO2 laser partial glossectomy
2. Transoral CO2 laser pharyngectomy
3. Bilateral neck dissections
4. Microlaryngoscopy
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | My tumor was fairly large. I had surgery and then radiation tx. My nodes came back clear and if any were positive, chemo would have been added to the mix.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | 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 | Hi Carol:
Welcome to OCF.
You will find lots of support here. There is so much info on this site, and so many helpful people to answer your questions. Hope you can get your daughter and husband to become members too. At least you are here, and you will learn so much.
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 | Carol, If she has already had mets to at least one node then rad concurrent with chemo is the ONLY prudent choice regardless of surgery. Has she been tested for HPV?
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Robin had laser surgery on his primary tumour which was on the side of his tongue.
i have to agree with david,if mets are present (N1)then aggressive treatment is required.
good Luck
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2009 Posts: 7 Member | | OP Member
Joined: Jan 2009 Posts: 7 | David, I don't know if the HPV test was given. However, the surgeon that performed the biopsy certainly gave the impression that it probably was the cause. I intend to find out more tomorrow at her follow-up appointment. Carol
mother of 43 yr-old female,
post-op Dx: SCC rt.tonsil,non-ker.type,poorly diff.T2,N2,MO,stage IVA
1. Transoral CO2 laser partial glossectomy
2. Transoral CO2 laser pharyngectomy
3. Bilateral neck dissections
4. Microlaryngoscopy
| | | | | 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 | Carol, No surgeon can look at the biopsy and determine if it's cancer much less HPV+. He was probably using the scientifically endorsed and approved SWAG method for his assumption.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | He may have been applying SWAG principles to the Risk Factors and coming up with HPV as a most likely cause. That would be an estimate on surgeon's part, not the result of an actual test. Problem is that there are likely risk factors that haven't yet been identified, just as HPV is a relatively recent contender compared to alcohol and tobacco. Note that cancer risk factors contain most of the popular human vices like alcohol, tobacco and sex -- Seem like only drugs are missing!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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