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T O P I C    R E V I E W
cosimotto Posted - 05/10/2010 : 11:34:38
Hi Everyone,
I've just been diagnosed with early stage squamous cell carcinoma of my right lower lip as of May 3, 2010. They are recommending Moh's surgery. The Moh's surgeon will need to take about 1/2 of my lip, maybe more depending on what they see under the microscope. He described a vertical incision to remove just the tumorous area on the right side verses a whole lip shave (or vermillionectomy) because my entire lower lip is pre-cancerous. The left side had been having trouble with sores that wouldn't heal two years ago and was biopsed three different times, but it did not show any cancer at that time. After the removal of the whole lip they would then do a lip flap advancement, whereby they dissect the tissue on the inside of the lower lip and pull it forward or advance it, then stitch it to the border of my lower lip. This will result in a scar that runs horizontal along the lip edge. He also said if they did just the right side, he may need to do a vermillionectomy anyway. The Moh's surgeon is very experienced with cancer on the lip; they do about 300 cases a year! I live in S. Florida. I will meet with the plastic surgeon to discuss the operation more and to see what type of reconstruction will be best. If any one has any experience or thoughts that would be greatly appreciated.
19   L A T E S T    R E P L I E S    (Newest First)
Chaos2 Posted - 07/13/2014 : 05:38:47
RJ1, thanks for your reply and encouragement. Swelling actually worse today but I managed to drink a milkshake, so that's progress! Agree that there could be more online info on this particular cancer.
RJ1 Posted - 07/12/2014 : 17:59:27
Great to hear you are recovering and the surgery was successful. Keep us informed on how things settle for you. It's always very encouraging to hear from folks going through similar things. I remember feeling overwhelmed because of the lack of information out there when it comes to lip cancer. This forum really helped me.

Congratulations on everything! You are a brave and healthy person#128515;!
Chaos2 Posted - 07/12/2014 : 17:13:01
Hi, had 7.5 hours of Mohs surgery yesterday to remove squamous cell of lower lip. Surgeon had to go in 3 times to get it all (so the 7.5 hours includes 3 waits for lab results). It was complicated by the fact the cancer had wrapped around a nerve. I got 10 mg of Valium twice, because of the length of the procedure. He did a flap on one side of my mouth, running down the smile line. Last night I was in extreme pain and not even an Oxycontin would fully relieve it. Eating and drinking has been difficult. I can't put my lips together to suck on a straw; the opening is like the slot for a credit card at an ATM. All I could do last night was try to shovel in ice cream -- on a dinner knife. Today I was able to use a child's spoon to get scrambled eggs into my mouth. Half the food falls on the floor. I took the bandages off tonight, and the whole thing isn't as bad as I thought, although I still look like I lost a 10-round boxing match. I have a lot of swelling. Despite the (hopefully) temporary pain, I'm so glad I got it out. The surgeon said squamous cells of the lip can spread to neck lymph nodes.
RJ1 Posted - 07/09/2014 : 17:37:28
Hang in there, Chaos. You will be like new soon. I had chemo 3+ years ago and am cancer free and feeling like new. You will be there soon.
Chaos2 Posted - 07/09/2014 : 16:48:18
Chaos here again. Having Mohs surgery on lip day after tomorrow. Thanks for all the support and advice. :) I'll report back on how it went, in case it helps others down the road.
Chaos2 Posted - 07/02/2014 : 19:12:47
Hi, just diagnosed with squamous cell cancer of lower lip. Have been referred to Mohs surgeon. Scared of what's to come. I've had basal cell and squamous cell surgeries before but never one with scars that could't be hidden by hair or clothes.

What should I expect? How bad? (The cancer is fairly large, and, unusual, painful.)
rick789 Posted - 03/22/2014 : 13:51:47
Hello all,

New here. Been fighting lower lip kerertosis for almost two years. Tried the cryosurgery one time 18 mos back, seemed to work but within 6 mos the AK was back. A different derm at same hospital said to use Effudex twice a week for 3 months. Maybe I didn't follow it religiously. Then used it again twice a day for two weeks. Still no solution. I haven't had a biopsy yet as we recently lost our insurance but will get an affordable plan thru gov soon but its a catastrophic plan where I have to pay for everything up to quite a bit. Before we lost our insurance the derm offered a prescription for Iqumodid but I was afraid to try it because of the side effect horror stories. Now not sure what to do. I probably need to get the biopsy and pay for it out of pocket. I guess my biggest concern now is has it progressed to SCC while I was going thru these ineffective methods. Funds are tight right now - wondering if I should try the Effudex again and what frequency. Or what?
GLADIATOR Posted - 01/23/2014 : 15:04:34
Hi Everyone,
I had MOHS surgery of lower lip on 1/17/14 it took 4 hours it really wasn't that painful during the procedure because I had 20 injections within 4 hours. They had to give me 10mg valium to keep calm. the pain was very bad 2 hours after last injection and I was taking rite aid brand Tylenol which is complete garbage. On Monday evening I mad a big mistake and took 3 advil well within 2 hours later my blood vessels ruptured and my lip stayed blood all over my bathroom this happened 3 more times Monday night. The next day I was taking was at a mri place with wife and she was in the machine when my lip had another rupture guess the Advil was still in me... well it looked like a crime scene blood all over the place they called 911 I had to go back to my doctor to get it re cauterized again I dumped the right aid brand Tylenol and Advil in the trash and bought the real Tylenol it works better. Lip still is swollen and burns its healing pretty good im 1 week out I still have it bandaged can barely eat food only smoothies through a straw. My doctor was awesome he is a dermatologist that is a mohs surgeon. He really kept the cosmetic part in check and is gentle during the procedure
RJ1 Posted - 04/02/2013 : 11:08:10
I'm not sure about those two option but you should ask if Chemo is an option. I was given the choice of chemo or MOHS and chemo did the work in 3 weeks. I've been free and clear now for 2 years. Yours may be more advanced but it's worth asking. My doctor said the chemo has a 90% success rate. I'm not sure if that's accurate but it worked for me. Hang in there! You'll be better soon.
nejmant Posted - 04/02/2013 : 10:30:51
I have a question. My lower lip was bipsied 2 weeks ago and it is squamous cell ca. I have two opinions on what should be done. I is wide incision removalthe beginning of May or MOHs the beginning of June. Which is the best and will waiting until June be too long.
RJ1 Posted - 03/31/2013 : 23:15:55
Yes, lips are tough. I used aquaphore in excess and it helped a lot. The pain was tough but it was worth it. I was told to do 2 weeks and I did 3 just in case, as I can't stand the thought of MOHS. It worked brilliantly and I am 2 years cancer free!!! The best part about lips is they heal remarkably quickly. Mine were back to new in less than a week. Also, they looked like baby lips. All new skin!

Hang in there! It's a tough road but it was worth it for me.
anivoc Posted - 03/31/2013 : 09:29:00
So sorry about your husbands dilemma.

Lips are one of the tough places to help heal ... we stretch them so much when we talk or eat.

I make my own healing salve with bee's wax olive oil and coconut oil.

I apologize that I don't have the exact ratios but I believe it is @ 2 parts olive oil, 1 part coconut oil and 1 part hard bees wax.

I put it all in a corning ware coffee cup and then set it in a low boiling pan of water until it all is liquid..stir it up and let it cool... it becomes a paste kind of the consistency of Vaseline.

If it was me I would try and keep the wounds covered in this salve or another healing salve as often as possible.

Because of saliva moisture I don't see being able to keep the wounds covered with a bandage or Micropore tape but you could try. I buy the flesh tone 3m micropore tape online all the time for my other lesions.

Good luck ...prayers going out for relief and healing soon

Butigli Posted - 03/20/2013 : 15:50:28
My husband has used Fluorouracil on his lips and all of the skin has came off of them really deep they are just a huge open wound, he has used a tube of some greasy stuff the dr told him to use in just 2 and 1/2 days... he can't eat without them drying, cracking and bleeding all over the place. She had prescribed he use Fluorouracil for a week, then quit a week then start it for a week on the third week... he could not make it for the entire first week he had to stop at 6 days. that was 12 days ago, his lips still look like someone took a patato peeler and peeled the skin off.. do you know of any way to bandage his lips and keep them moist so they can heal?
RJ1 Posted - 01/18/2011 : 19:54:21
CJ, I ready your post and I too am using efudex on my lower lip. MOHs is my next option according to my Dr but I'm hoping for the best. I'm 9 days in on a 14 day treatment. Like you said, it's hard to find much info on lips on the web. How are you doing? Did it work? Recovery? It's pretty miserable but I feel like it's doing it's job.
cj jones Posted - 12/05/2010 : 16:37:40
I am delighted to have found this site and have been thru many of the topics. I found my Mohs dermotologist thru a recommendation from the local Health & Science's University and my regular dermotologist. Surprisingly there were probably 5 in the yellow pages of a city of about 1M people.

I am looking for more information on Efudex which is being used on the entire lower lip for 14 days and then dr visit to access. The lower lips is dry - the surgical side redder than the other but I have yet to figure out a way to keep my upper lip from touching the lower - so some oral tissue is painful....any suggestions to get me thru the weekend would be greatly appreciated. I read on one forum you could cover the treated area after 2 hrs w/ aquaphor. Most of the online info I have found about the topical were people using it on their body vrs the lip.
cj jones Posted - 12/05/2010 : 15:50:00
Cosimotto - I had Mohs done on the lower left side of my lip in May, 2010, and was very satisfied w/ the results. I did have great confidence in my dermotologist. It was done out patient w/ mild discomfort afterwards. I am now using Efudex topical for 2 weeks on the right side as a precautionary tactic and that is a BEAR! But just have 10 more days for this phase and back to derm. Good luck w/ your choice. Many derms want to use Efudex for Squamus and after my brief iniation to this topical from Hades - my only choice would be Mohs.
randolph Posted - 05/11/2010 : 01:47:51
Hello Cosimotto....I had this exact same procedure done on my lower left lip several years ago and if you have a competent FACS or surgeon, it's not as bad as it sounds really. Mine was done in an outpatient facility, all went well. However I should add that my SCC came back 2 years later and I had it done over again. In truth, it looked better after surgery No.2 than No.1.

Probably the worst thing of the entire experience were those dang internal sutures down inside of the lip! These things drove me nuts for the last week until they came out. Initially I was very hesitant to do this Cosimotto, but now I have no regrets at all. The lip is about impossible to use an effective topical treatment on and the surgery is unfortunately about your only and best option. Yes I still have a slight mark there, but it's no big deal really. I'm a bit ugly anyhow. I've seen much worse from a bar room brawl. I am not in favor of getting whacked on by any means, but sometimes it has to be done. Go get that sucker out of there Cosimotto! I am Randolph.
dan Posted - 05/11/2010 : 01:13:12
Cosimotto, also with not strong confidence, I might give topical orange oil a try before giving in to Mohs. It seems to work best on SCC and has worked extra quickly on lips in the past in these forums. The active ingredient in orange oil is d-limonene and has been the subject of several cancer studies. Personally, I have used it topically for years with success. Orange oil has excellent penetration powers and should be safe to use near and in the mouth. Orange oil gives a strong burning sensation on skin cancers that lasts for about 25 minutes, then goes away. A treatment schedule might be something like apply once a day for about six weeks. Orange oil is $4 a bottle at GNC. But try this only at your own risk, I'm not a doctor. The Moh's route will work for sure but is very invasive.
thanks01 Posted - 05/10/2010 : 16:54:45
I don't feel confident giving any advice in such a severe case. But this is why I'm thankful for this website. We are not just dealing with "troublesome spots," even though at times it sounds like that when you read the threads. Skin cancer presents serious, sometimes long-lasting, problems of expense, suffering, and disfiguring outcome results. I am glad that you have an experienced doctor, that the procedure you are considering (if one is to be done) is the most sensitive one, Mohs. Perhaps some other members here can help, or suggest some realistic course of action to try before the Mohs. Squamous cell cancer is more threatening than BCC for spreading, so you may be best off to take immediate action. I will say a prayer for a good outcome, no matter what you do.

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Disclaimer: The three most common types of skin cancer are basal cell carcinoma, squamous cell carcinoma, and melanoma. While melanoma is the most dangerous type, keep in mind that any cancer and potentially some cancer treatments can cause injury or death. The various views expressed in these public forums should not be considered as medical advice. See your qualified health-care professional for medical attention, advice, diagnosis, and treatments.