#89560 02-05-2009 05:35 PM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | So just got home minutes ago and before shutting down the computer to drink a bottle of wine with my wife (the ENT surgeon suggested it as at this point it cannot hurt Here are her Bolded answers to the questions I posted earlier.
1. With a new lump now on the lower side of the tongue where we could actually feel it with my finger clinically cancer - is partial glossectomy my best bet at "beating it"? YES - AND SHE SPOKE WITH THE RO WHO AGREES 2. Would some CO2 laser surgery on tongue be better than scalpel? NO 3. What percentage of tongue are you planning on removing (1/8;1/4;1/2)? ONE HALF 4. How urgent is this surgery? Can it be delayed for expert flap surgeon? SHOULD BE DONE W/I 3 WEEKS - EXPERT LINED UP 5. How many glossectomies have you done? OVER A HUNDRED - NOW REDUCED TO ONE A MONTH 6. How many flap reconstructions have you or a co surgeon done? HE DOES 2 TO 3 A WEEK 7. What are the odds on �Tin Man Syndrome�? (multiple serial glossectomies as some OCF posters had) NO CLUE JUST HOPE 8. What assistance can your office provide in getting second opinion CAN'T EXPEDITE JOHN HOPKINS BUT WILL SEND TO WHOEVER 9. What�s the SWAG risk benefit: how long would I have if I do nothing? Do I only get an extra 5 weeks? IF NOTHING, DEAD W/I THE YEAR AND VERY PAINFULLY WITH INABILITY TO EAT, TALK PLUS PROFUSIVE BLEEDING FROM THE MOUTH WITH SURGERY - GOOD CHANCE OF EXTRA ONE TO FOUR YEARS 10. Can you do a �selective� Neck Dissection that operates on fewer areas, preserving function in the shoulder, and can sometimes leave the sensory nerves, preventing numbness, especially in the earlobe. GIVEN LOCATION OF TUMOR PROBABLY NOT - EXPECT PERMANENT DAMAGE FROM SPLITTING JAW BONE IN HALF PLUS TUMORS INTERTWINED WITH SENSORY NERVES 11. Can you do a neck dissection that still removes tissue from all five levels, BUT sparing the sternocleidomastoid muscle, the spinal accessory nerve and the internal jugular vein ? PROBABLY YES 12. Should I be changing RO and MO since prescribed TX didn�t do the trick? THEY BOTH RECOMMEND THIS SURGERY AND WANT TO TELL ME SO IN PERSON IF I WANT TO SEE OR HEAR THEM EVER AGAIN - THEY FEEL VERY BADLY ABOUT THIS OUTCOME- 13. How long in hospital? 7 TO 10 DAYS 14. How long recuperation? 6 MONTHS TO A YEAR 15. Ability to Speak? YES BUT WITH A LISP AND NOT FOR 2 MONTHS 16. Ability to swallow? NOT SO MUCH - HOPE FOR THE BEST
Then she added in full detail the really nasty side effects
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) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Charm,
I'm happy your ENT answered your questions, that is very helpful. How are you feeling about everthing? I know I am feeling a bit nervous right now. Thank you for posting your questions and answers, I find it helpful and I'm sure others will to. I've been thinking about you, thanks for the update.
Suzanne
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2008 Posts: 228 | Glad you got some answers. As far as the split mandible for surgery - it was presented to me as a possibility but since I was having a bilateral neck dissection, there was the possibility that they would be able to do the tongue resection and reconstruction through my neck, and that's what happened. So, depending on where your tumor is and if you're having the neck dissection, I would ask your ENT if that's a possibility - one less thing to heal from.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | 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 | Im so sorry about your latest struggles with the recurrance. Your questions were excellent and well thoughtout. Your ENT seems to be on the ball and very honest which is admirable. Wishing you the best possible outcome to this. 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 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Charm,
I'm devastated about the news and I will keep you in my prayers.
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: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hi, Charm,
I am so sorry about the news regarding your recurrence. Your questions were excellent and I'm glad you got direct and specific answers although I imagine the information is difficult to take in. My thoughts are with you and wife.
Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Charm
The surgery that you have outlined sounds very similar to the surgery that I had in April 2007, including the jaw split and bilateral neck dissection, nerve and vein in neck.
Did you doctors give you any details about a tracheotomy?
If you have any questions that you think I might be able to assist with based on my experience please do not hesitate to ask of alternatively send me a PM
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Charm
Your questions were very well thought out and I only wish that I had your presence of mind when I was preparing for my surgery. This sounds very similar also to my recent surgery also. I did have more of my tongue removed though. Feel free to pick what is left of my brain anytime.
In my experience the doctors have never been very positive when answering my questions and the outcome has been better than what their answers indicated. I think that this is part of their education so that you don't get disappointed and are pleased with the outcome. For example, my doctor told me that they did not expect me to be able to talk or swallow after surgery. I was talking up a storm once I woke up - granted some of it was not intelligible, but that has improved greatly. And I can swallow - just tonight I ate my first whole container of yogurt and I will have lasagna someday.
My thoughts are with you and your family. Try not to let the negative thoughts get in and think positive.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Charm,
I personally appreciate a doctor who answers my questions honestly, even when I don't like the answer. I wish you the best and will keep you in my prayers.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | You got a lot of good answers -- I would personally be inclined to hang the side effects and go for as much as possible -- That may happen anyway once they open you up and see what is there.
BTW, all, be careful about "how much tongue" questions and answers because the tongue has so many parts -- One person may have the mobile (in the mouth, up front) part of the tongue in mind and the other may be thinking of the entire tongue including the large BOT vertical muscle portion in the throat. When a doc says "half", he/she might be referring to the entire tongue or just the mobile portion.
I'd be quite surprised if there isn't going to be a trach involved in all this because of all the trauma and swelling.
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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