Previous Thread
Next Thread
Print Thread
Where to have surgery. Plastics? #198120
04-13-2019 07:06 AM
04-13-2019 07:06 AM
Joined: Apr 2019
Posts: 3
L
Les Carter Offline OP
Member
Les Carter  Offline OP
Member
L

Joined: Apr 2019
Posts: 3
Diagnosed last week with SCC of the buccal mucosa (cheek).
PET Monday, 3/15.
My ENT has done a fair amount of thinking out loud, but plans will depend to some degree on PET results and on margins at surgery. Best case no bone will have to be removed, limited neck dissection.
He's not a cancer guy. Advises 1 H&N cancer surgeon locally or go to a center 200 miles away. I also have a friend who was cured about 20 years ago at MD Anderson. I kinda think most centers will have surgeons capable of good results with tumor free margins.
He also thinks I'll need a forearm free flap. Indicates many of the H&N cancer surgeons do them themselves. I'm wondering if a plastic surgeon wouldn't get a better result cosmetically.
I welcome comments, suggestions or thoughts.

Re: Where to have surgery. Plastics? [Re: Les Carter] #198121
04-13-2019 07:58 AM
04-13-2019 07:58 AM
Joined: Jun 2007
Posts: 10,386
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,386
PA
Welcome to OCF, Les! Im sorry you have a need for our group but dont worry, we'll do our best to help you get thru everything you're facing. As oral cancer (OC) patients/survivors and caregivers, we have been thru what you will need to get done. Its not a picnic but its doable and unfortunately necessary. Read thru posts here and also on the main OCF site to learn about your illness. An informed patient makes for a strong advocate!

As far as selecting the best treatment facility and doctor, you may need to get a few different opinions before you decide where to get treated. Just please dont take too long in deciding, you do not want the cancer to continue to grow and become harder to treat. At OCF, we have members from all over the world who have been treated at many different places. If you would ask anyone you know who had cancer whats "the best" doctor/facility, they will probably tell you it was the place they went which isnt anything to go by either. I know this is very confusing, but picking the right place and doctor is very important! Dont let distance or travel decide your medical team, theres many places to stay near the large centers for free or very little (like $5 or $10 a night they'll feed you too) even free airfare to get back and forth to treatments. With only 1 oncologist in your area, that tells me they are knowledgeable about many things but probably not an expert with any one particular cancer. Please be smart and use caution, OC is NOT something that sort of doc would see frequently, certainly not every day, month, or even year like a large top cancer treatment center would be.

The very best places to get treated would be at one of the top Comprehensive Cancer Centers (CCC's). These facilities use state of the art info, procedures, etc and have the best survival rates over the smaller local facilities who probably are NOT that familiar with OC. The CCCs use a team based approach so all the specialists are on the same page meeting at their "tumor board" meeting to create every patients individual treatment plan. Its much better to have a surgeon who does 20 similar surgeries a month than someone who might get one every couple years. OC is one of the rare cancers but dont let being rare fool you... its a horrific deadly disease that has only about a 50% survival rate for patients at the 5 year mark. CCCs also attract the brightest and most skilled physicians and use the newest equipment and facilities. Ive included links to lists of the top US facilities and the main OCF site for even more info.

As far as using a plastic surgeon goes, its definitely up to you whoever you choose but when talking about cancer you should be treated by a oncologist not someone who does cosmetic surgeries (just my opinion). Im probably the wrong one to answer this question after what Ive been thru which was way more than I ever imagined could happen to a cancer patient. Ive learned along the way far more than Ive ever wanted to know about a disease I was diagnosed with but I had never heard of. One huge life lesson I learned the hard way.... looks arent everything (even the most attractive people age and lose their good looks) when it comes down to survival vs looks, survival should be top priority. In my case it was, its been a very long hard road but looking back I wouldnt have changed a thing as with the prognosis I was given, I would not have beat the odds and survived.

Hope I havent overwhelmed you with too much info. Feel free to ask question and we will do our best to answer. As fellow OC patients and caregivers we do not have medical backgrounds so we may not always know all the intricate details or procedures but we can at least point you in the right direction. For now read, learn and absorb everything. Oh yeah, I almost forgot... eat ALL you favorite foods as much as you want, even desserts. Good luck with everything!!!


NCI list of CCCs

US News Best Hospitals List

OCF main site --- Diagnosis

OCF main site --- Treatment


Christine
SCC 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 smile
Re: Where to have surgery. Plastics? [Re: ChristineB] #198132
04-14-2019 07:38 PM
04-14-2019 07:38 PM
Joined: Apr 2019
Posts: 3
L
Les Carter Offline OP
Member
Les Carter  Offline OP
Member
L

Joined: Apr 2019
Posts: 3
Thanks for the detailed reply!
I have a couple CCC's in mind.
And I definitely place survival and quality of life ahead of cosmetics, would only consider the plastic surgeon doing the flap, not the tumor surgery. I gather sometimes the two surgeons can combine their procedures into one surgery. But I'm definitely still learning.

Re: Where to have surgery. Plastics? [Re: Les Carter] #198133
04-14-2019 09:46 PM
04-14-2019 09:46 PM
Joined: Jun 2007
Posts: 10,386
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,386
PA
Good!!! Im very glad to hear you are thinking of CCCs. You will definitely want to get this taken care of in one shot, killing every single cell, get back on your feet with an easy recovery then you can move on (fingers crossed) you wont ever have to deal with cancer of any kind again. Go with the best medical care you can, put your trust in your doctors to do whats necessary to eliminate the cancer. AT least at CCCs they use a team based approach so all the specialists are working together on each individual case. You dont have to run from doctor to doctor trying to remember who does what and if you told each doc everything you needed to. CCCs have tumor board meets where all the specialists work on each case one at a time, patients and caregivers are able to attend too.

Using a plastic surgeon isnt unheard of around here. Ive done it myself. My situation is very different than others here, I ended up being diagnosed with OC 3 times in 3 yearsI The third time half of my lower jaw needed to be removed which was a very intricate and long surgery. I had 2 ENTs and 2 plastic surgeons doing my 10+ hour surgery in 2009. I know it sounds pretty bad, I dont want you to worry or become concerned about anything other than what you have going on. Im just letting you know most here dont use a plastic surgeon but I have on top of all the other things I had going on, but... thats just me!!! Im one of the very, very few who needed such a radical surgery so please dont worry. Every person is different and will respond in their own unique way to procedures, medications, radiation, etc. Even someone with a similar diagnosis still wouldnt be a good and/or equal comparison.

You have found the very best site to learn about OC!!! OCF is dedicated to helping OC patients and caregivers. You can be certain when reading thru posts here and the tons of info on the main OCF site (link for main OCF site was in my previous reply), the info you read is from a reputable source, is up to date and correct. OCF is one of the very few medical websites that has earned the right to carry the prestigious Health on the Net (HON) badge. Not just any website can meet the hundreds of items required to make our website HON certified. Along with knowing the info is correct rest assured our site is strictly monitored 24/7 to keep any sneaky spammers, web-crawlers or spiders from posting their false cures or trying to sell our members unneeded/unwanted items. OCF does not accept advertising of any kind. When a member is recommending a product, its something we ourselves have used and know it works. Privacy is important to OCF. We guard our members privacy at all times, refusing the never-ending stream of offers to buy our members info and email addresses. Thats just not OCF! Our reputation of having integrity, being honest, and always keeping the best interests of OC patients and caregivers in mind with everything we strive to accomplish. Sorry for my rambling!!!


Christine
SCC 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 smile
Re: Where to have surgery. Plastics? [Re: Les Carter] #198162
04-23-2019 10:29 AM
04-23-2019 10:29 AM
Joined: Jan 2019
Posts: 15
Washington, DC
B
Barbara5524 Offline
Member
Barbara5524  Offline
Member
B

Joined: Jan 2019
Posts: 15
Washington, DC
The other thing you should consider is the type of care you will receive after surgery. The deciding factor for me when my husband had surgery was that he would be on a head and neck floor with nurses who were very experienced with these types of surgeries and that all of the staff were used to working with patients on a regular basis who could not talk. When my husband pressed the call button, the desk staff sent someone in whether he answered or not. I don’t know whether a general surgical floor would know to do that.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Re: Where to have surgery. Plastics? [Re: Barbara5524] #198181
04-24-2019 09:58 AM
04-24-2019 09:58 AM
Joined: Mar 2018
Posts: 61
Maine
V
Vicky1 Offline
Supporting Member (50+ posts)
Vicky1  Offline
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 61
Maine
My dad had a maniblectomy and fibular free flap reconstruction last year. He had a cancer surgeon remove his tumor and lymph nodes and a plastic surgeon reconstruct his face. It was a long surgery. I was suprised at how great he looked afterwards. All I could think was that he was going to look like the people in the antismoking ads on tv. I think other than his missing teeth and a little droop in his lower lip, it was hardly noticable after the swelling went away, which took a while. Even the scar ended up being in a crease in his neck. He thought otherwise, of course, because hes had 64 years to study his face, but no one in our lives has ever mentioned that he looks any different. He just had another reconstruction, this time in the front, and using his scapula and he still looks great!

I would definitely recommend going somewhere that people are used to head and neck cancers. Theyre going to be best equipped to make sure they get all the cancer, spare what can be spared for function and cosmetics, know what to look for while you recover and be prepared for the special care you'll need right afterwards.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,386
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
Atanu, Olddrummer, lioness, anniesmom, BUBBA61
12201 Registered Users
Forum Statistics
Forums23
Topics17,589
Posts194,251
Members12,202
Most Online306
Aug 21st, 2016
Powered by UBB.threads™ PHP Forum Software 7.7.1