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buccal mucosa SCC

stegavhagky
Posts: 12
Joined: Jun 2011

My husband who is 39 years old was just diagnosed with scc of the buccal mucosa. I was wondering if anyone on here has had this before and wouldn't mind me asking some questions?

stegavhagky
Posts: 12
Joined: Jun 2011

Nobody?

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

for someone with specific knowledge of this to reply. Most of us on here are intimately acquainted with tonsil and lymph node cancers though some are NPC and some are others. We, myself included, are very happy to talk to you about operations like tonsillectomies and neck dissections and about radiation and chemo and the many variations thereof. And we can talk about PEG (or not to PEG, that is the question) and about weight loss and weight gain and about saliva (usually too little but occasionally too much) and about a host of other issues (blood clots anyone?).

What I suggest is that you put out your questions and we can start to answer these while someone with the mucosa experience finds this thread. This is a wonderful forum with deeply caring people. While I can't say that it saved my life as I would probably have survived without it, it made my life immeasurably better and lessened the pain, both physical and psychic, over the months. We are here to give this to you as well. Doug

And don't forget the Caregivers discussion as well.

BeacherBum's picture
BeacherBum
Posts: 32
Joined: Jun 2011

I'm not familar with this, but I was recently treated for Adenoid Cystic Carcinoma, which is an oral cancer, so I might be able to help.

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

I have not read "buccal mucosa" SCC on the boards...but that doesn't mean anything...there are many super people on the board that will post I'm sure. Scroll down and see if you can find the "super-thread"...it will have links to different subjects.

Best to you and your husband,
Chuck.

stegavhagky
Posts: 12
Joined: Jun 2011

Thank you to all who have replied. This is all new....cancer and message boards. I'm honestly not sure what I am looking for as it is still so confusing. He is having his surgery soon and they will take out the tumor and they are also doing the neck dissection to get all lymph nodes. His doctor told him that he would over treat him and not under treat due to his age. I think right now my biggest question would be on the neck disscetion. What should we expect from that part of it?

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

As another poster said, look for the Superthread discussion and go to the relevant parts. I am sure our long discussion about neck dissection are there or will be there soon. I also know that within the past couple of weeks we have ahad two or three additional threads just on this.

I can tell you that my own neck dissection, done less than four months ago, was nowhere near as bad as I feared. That said, I recognize that others had much more extensive work done including nerves and muscles taken out and put back in and they have more lingering problems. I was back playing hockey almost as soon as the stitches came out (which was a week after the drains came out) but I was VERY lucky in that he only took out 26 lymph nodes.

However, buccal mucosa (buccal means mouth or, more specifically, cheek) would be gotten to from the inside, no? If so, then the experience would be more like those of us with tonsillectomies or other oral surgery. That would mean no obvious scars on the outside but lots of painful work inside. Can you tell us what they are thinking of the order of work? I would be very surprised if they were doing inside and outside close together.

Doug

stegavhagky
Posts: 12
Joined: Jun 2011

Doug- The tumor is pretty far back on the inside of his right cheek. They are having to graft skin from the forearm to place inside onto the cheek and grafting skin from his thigh to place on his forearm. That procedure will be done first then they will do the neck dissection to remove the lymph nodes.

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

Again, I imagine that it would be several weeks between these two operations just to give him a chance to heal a bit. I assume they are also talking about rads and chemo afterwards? In one order or another and to different degrees this is the standard treatment. If the surgeon is already planning on taking lymph nodes then he either knows or strongly suspects that it has spread to there. It would have been on the basis of a scan. Ask this.

Have you asked if it is HPV-caused? It probably won't make any difference in the treatment but the success rate is even higher as HPV-cause tumors are known to be slower growing and more responsive to rads. However, buccal mucosa is more likely to be smoking-related.

Can anyone out there find the thread with the ~30 questions to ask at the start? If anyone can, then it should be added to the Superthread (which is really SUPER). These would do you a world of good.

Hope this helps some. Doug

Here is a site with more info:
http://emedicine.medscape.com/article/855235-overview

stegavhagky
Posts: 12
Joined: Jun 2011

Doug- We go this week to have CT scans done on the head and chest. He said depending on what they show and pathology..that will decide on whether he has radiation or not. My husband dipped for over 10 years but quit about 5 years ago. The doctor said that even though he quit, it changed the DNA in his mouth and essentially got him anyway.

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

I have to go to a meeting. Sorry to hear about the tobacco.

Essentially, chemo tried to kill anything in your body that grows fast on the theory that this will include the cancer. Radiation can be directed at very tiny areas and it will basically cook those areas little by little over a month or two until the tumor is dead. Neither sounds very appealing, does it?

I did check out the Superthread and it does have the 35 questions. Go most of the way to the bottom and look for Daddisgirl. If you can get answers to these (in their improved and edited version) then you will know most everything you will need to know to make decisions. On the Superthread you wil find a couple of older discussions about neck dissections as well though you should also look for the recent ones. Sweets includes links to pictures and I can send you to my pictures on caringbridge.

Off to work. Doug

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Here is that thread. Definitely check out the HNC Superthread. It's a collection of links that will be every helpful to you.

LIST OF QUESTIONS FOR YOUR DOCTORS CONTRIBUTED BY DADDISGIRL

BeacherBum's picture
BeacherBum
Posts: 32
Joined: Jun 2011

I had half of my soft palate removed when they took out my tumor. Interestingly enough, they grafted right from my thigh to cover the open area. The graft took perfectly and the scar on my leg is getting smaller by the week.

Shellysa's picture
Shellysa
Posts: 12
Joined: Aug 2010

I am one of the very few who has experienced carcinoma of the buccal mucosa. I had the inside of my right cheek removed in May of 2010 and replaced with a graft from my thigh. I also had 30 lymph nodes removed (all negative) and had no problems. I then had 25 treatments of radiation...that was worse than the surgery with sores on my tongue and lips, etc. There is apparently a high rate of recurrence in the first two years with this type of cancer but so far so good! Saying that, however....I just had Mohs surgery on a SCC of the lip (right side, of course!) but they don't think it is associated with the SCC of the cheek. Probably skin cancer from sun....let's hope. I can tell you lots more...not quite sure what questions you might have but am happy to help you in any way. Search "buccal mucosa" on this website for "my story"

stegavhagky
Posts: 12
Joined: Jun 2011

Thank you again for all who have replied. Shellysa- I'm sorry that you have had to go through this as well. As I mentioned above, my husband has all of his CT scans tomorrow and his preop. His surgery is June 30. His doctor told him that the skin grafts would be more painful than his cheek. He said it was like a burn. He will spend 24 hours in ICU and then remain at the hospital for 7-10 days. He is supposed to be on a NG tube for feeding for maybe 2 weeks. Is this similar to your experience?

Shellysa's picture
Shellysa
Posts: 12
Joined: Aug 2010

My surgery was at Loma Linda University. I was in the OR for about 2-3 hrs and then back to a regular room after recovery. I was in the hospital from Wed. and released on Sat. The skin graft wasn't a problem..they told me the same thing. It is about the size of an ipod and bled some at the beginning and totally disappeared after about 8 months. The big problem is the skin graft in the mouth because the scar tissue that grows limits your ability to open your mouth. I can barely eat a hamburger, and definitely no hot dogs! I had a feeding tube for the first 3 days in the hospital while the graft "took" and then liquids only for about 3 weeks while things healed. As I said, the actual surgery on the mouth, the lymph nodes, and the thigh graft were not as bad as they warned me. When you get to the radiation part, ughhh. I did not have any chemotherapy. Where are you having this done? I was told that this is so rare that there are very few places that do this operation and that is why I was sent to Loma Linda where there is a Dr. that knows how to do it...and well. I had an 8-inch scar from the neck resection and you can't even find it now, a year later!

stegavhagky
Posts: 12
Joined: Jun 2011

We are in North Carolina. He did tell my husband that he wouldn't be able to open his mouth as wide when all was said and done. It's nice to hear that it wasn't as bad as you had been warned. We have two small kids so I am just trying to prepare all I can to help them.

dahveed2's picture
dahveed2
Posts: 3
Joined: Nov 2010

Hi,
I found out 17 months ago that I had this disease,yesterday I saw my Doctor at the Cancer Ctr and was told the golden words NED, I can never find the words to express just how thankful I am to be here, Now I value this gift and those in my life. If anyone would like to know about my treatment and side/after affects most of all recovery, feel free to email me

Regards
Dahveed,

godisgreat
Posts: 18
Joined: Feb 2011

Hello Dahveed what was your course of Action.

My father also was diagnozed a year ago with SCC of buccal mucosa. His left cheek was reconstructed and his left upper and lower jaw was removed.

He has a swelling and it seems like there is an infection that wouldnt go away with pus coming out. The doctor took a biopsy and we are waiting for results tomorrow and his f/up is on wednesday. We are all praying. any kind thoughts are appreciated.

Thanks,
AG

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