Hi:

I'm a 41 year old female, I live with my 43 year old male partner, our two year old and our (one each) teenagers from previous marriages.

After much nagging from me and foot dragging from him, he finally had a biopsy of a lesion on his lip which came back last week as Grade I, well differentiated squamous cell carcinoma. The visible lesion right now is about the size of a dime. Four doctors have palpitated his neck lymph nodes and declared them fine. He is getting a chest x-ray. He's in the process of consulting with two plastic surgeons and will choose one to do the resection within the next week or two.

My concerns revolve largely around his getting appropriate treatment to ensure that the chances of it spreading or recurring are as low as possible. I'm not finding alot of info on SCC of the lower lip...it seems to live in a "nowhere land" between skin cancer and oral cancer. My gut instinct is that it has more to do with oral cancer because his is on the inside part of his lip.

He's been taking it pretty well in general, I know he's distressed at the extent of the probably surgery (1/3 of lower lip and some tissue down into his chin is the "best case" scenario), but, unless something unexpected comes up at resection, no one is suggesting radiation at this point. He has quit smoking, but has been very eager to blame his cancer on everything BUT cigarettes (including me!)...I'm hoping this phase will pass as he comes to grips with it and is ready to take a little responsibility for his smoking (I've smoked too and know how hard it is to quit, so I'm NOT judgemental about this!).

I guess what I'm looking for is any advice on whether SCC of the lower lip belongs here and what people would suggest for further diagnostic testing...all that's been suggested so far is the resection with examination of the margins and a chest x-ray.

Thanks!

K

Hi K, and welcome.

I am pretty sure that the treatment and procedure options will be similar for his lip cancer as it would be for the oral cancers you can read about here.

Radiation is something you and he should discuss with a radiation oncologist even if the surgeons say he dosn't need it. They might be right but you don't want to take chances with this cancer!


As far as what caused the cancer, well he is in denial. Tobacco use is the number one indicator for Oral SCC PERIOD. Because it is on the lip it is possible that overexposure to sunlight was a factor.

Thanks Mark...that's been my suspicion, that he should also see a radiologist or, at least, an oncologist. I'm not 100% confident that plastic surgeons, although perfectly competent to do a lip resection, are the ones to manage the cancer case as a whole. Now, I only have to get Dan to believe me! We are in the Boston area, so we have a good choice of hospitals here. Right now, he's checking out surgeons at Mass General and Lahey Clinic. IF, there is anything at all funky (something on chest x-ray or unclear margins), I'm going to try my hardest to get him to go over to Dana Farber...I KNOW he'll resist, so I'll need to accumulate ammunition for my sales job.

I don't really care whether he acknowledges smoking as the likely cause of his SCC...as long as he continues with his quit. I DO care that he's been so desperate not to blame tobacco that he's even tried to blame me! I have herpes, I have for 20 years. After 5 years, he's still got clean blood titers, so we've been doing a good job of avoiding transmission. He NOW wonders if my HSV-2 infection isn't the cause of his cancer. That just plain upsets me! I'm well aware of the connection between HPV and both cervical and oral cancer and even the, newly found, connection between a joint infection of HSV and HPV in connection with cervical cancer. 1) There's no evidence of a link between HSV-2 and oral cancer and 2) Even if there was, he doesn't have it, I do! Ugh...that's the end of that rant...I'm just waiting for this denial phase to pass...it's painful.

Thanks for the advice on radiation, I'm going to try to accumulate enough scary statistics to at least convince him to consult a radiation oncologist.

K, There are several people (regular posters) that were told they didn't need radiation. Now they are having to face serious realities. It is CANCER after all and it can and does KILL. I would get the finest care you can afford, at the largest comprehensive cancer center you can get to. The first time around offers the best hope.

As far as HSV-2 is concerned, I have not seen ANY suggestion that there is ANY cancer relationship to HSV-2. Even with the HPV connection, not all HPV viruses are known to cause cancer. In my not so humble opinion there is no value in blame at this point he HAS cancer, no amount of blame will change that. If blaming tobacco will keep him off the stuff then that is the only blame I can see as productive. If he persists in blaming you then I think serious counciling is in order (for him)

If you need scary statistics then: If he has a reccurance of this cancer the statistical 5 year survival numbers drop to 5 to 10%!

I think it's really unlikely that HSV caused a lip cancer. But smoking sure can. My grandfather had lip cancer from a pipe. Denial is NOT a river in Eygpt. SCC has a nasty tendency to "shed" it is nothing to fool around with. It is one of the more aggressive cancers. Dana Farber is good - so is Mass General. He'd be well served at either one. Who knows, maybe radiation only could kill it and he wouldn't need a resection. Some of us here have have radiation only (and usually chemo also) and we have been cured. Tell him he needs to go to a place where he can be given ALL of his options. Tell him also to grow up and get over the blaming stuff - it's a little late for that anyway. Like Mark said earlier it could also have been sun exposure. They believe that there may be a connection between EBV and HPV and throat cancer but I haven't heard anything about Herpes.

I know how you feel about the "clean blood" issues - when I had my workup I tested positive for Hep C and my wife has been freaked out ever since. Never you mind that I have probably had it since I was misdiagnosed in the 70's with Hep A - and not one person has caught it from me. My doctor claims that Hep C is in the cutting edge of the frontier in medicine, that they estimate that 4-5 million Americans are walking around with it - undiagnosed. Sexual transmission of Hep C between spouses is extremely rare - less than 1% of all cases. My second wife had herpes so I've worn both hats there too. She had her first outbreak after we had been married a year. I've had numerous outbreaks of herpes zoster (from childhood chickenpox) myself so I am no stranger to Zovirax. Strangely enough I had no problems with it when my immune system tanked last year from treatment. I fully expected it to kill me!

Mark,

You really scare me with those statistics. I'm pretty sure you have followed my moms story. My heart is in my stomach right now......I don't really think that my moms recurrance was a recurrance but an occult cancer that grew out of an unclean margin but her ENT says its a recurrance. Does that mean her chances of beating this thing are that low?????? Some reassurance here would be helpful.. She has been battling pre cancerous squamous cell for over 10 years now. I thought it was luekeplakia but from what her ENT says it was dysplacia then pre cancerous squamous cell and in April turned to invasive squamous cell stage 1. Her recurrance was very small less than a cm and less than a mm deep not in the bone or anything. I am going with the thought that everybodys case is different and you cannot put statistics on something like this????

K,
I apologize for getting off of the subject and taking this thread somewhere else I just wanted Mark to know what stats I was referring too.

Thank you,
Danielle

Hi Danielle,
An occult cancer is one where they cannot find the primary or that it is concealed. A recurrence is when cancer reappears and is attributed to the primary.

Statistics are difficult to deal with anyway. The 5 year survival rate from all forms of cancer combined is 62% The 5 year survival rate for oral cancer is about 50%. The 5 year survival rate for pancreatic cancer is 5% I think what Mark meant was a recurrence adds subtracts another 5-10% to the 5 year survival rate. The statistics don't take into consideration health habits, age, sex, race or other variables (like staging). Your mother should have very good survival odds with it being a stage I. I personally have not seen any data on survival rates for recurrence. There are a number of folks here who have had recurrences and are quite alive and well today.

This is why we tell people over and over and over - get to a comprehensive cancer center and get the highest standard of medical care possible. People have died because it was "inconvenient" for them to leave their little town and go to the big city for access to a CCC. Or they just accept what they are given without persuing their own medical advocacy. Some people are comfortable with a 20-30 year old treatment modality.

I spent hundreds of hours searching and seeking out the best treatment, doctors and institutions with proven track records. There still aren't any guarantees.

K....

I grew up in Boston (Jamaica Plain & Roslindale). If I were in your situation I would get my guy to Dana Farber ASAP. They have the best of reputations in the Boston area.

Khaja

Gary,

You have such a way with words and my heart actually went right back up where it belongs. I thought that occult meant a small little cancer that was left behind....oops. I am still taking her records to the City of Hope just so they can take a second look.

Hearing what you told me will actually help me sleep at night instead of tossing and turning and thinking about the cancer. You are wonderful!

Danielle

Gary,

I tested positive for Hep C after my mother passed away in late 2000 from ovarian cancer. I spent most of 2001 trying to find out why I felt so tired and they found 4 pre-cancerous polyps in my colon and hep C. I spent all of 2002 on the hep c treatment and shortly after that they found SCC stage IV on the base of my tongue. It has been an interesting century, to say the least. Through all the radiation and chemo the hep c is still undetectable after the treatment. And by the way, I have been able to deal with the dehydration and dry skin issues of radiation and chemo from current knowledge left from the hep c treatment. Go figure!

Ed

Danielle, statistics are not to be worried about unless you need to worry. That may sound strange but even the worst cases of any bad disease have survivors. My intent was not to scare you or any one else. Just the same, recurrent SCC is not a happy statistical thing. The number I quoted was from something I read, but I am not able to find it after 4 hours of searching. Not to matter though, every person is their own statistic. forget about what you hear or read because your mom might very well be the person that knocks the statistics off the map.

To K, the lip is perhaps the best statistical location for this kind of cancer, my point about the scary thing is still a real number but we don't as individuals know our number. Do the best you can and live.

Hi Ed,
The Hep C deal is in "idle" at the moment. They are not planning on any kind of treatment unless my STOG levels start to shift. I was also surprised that the chemo & radiation didn't make it worse. The last time I had Hep symptoms (jaudice, nausea, etc.) was back in 1975. My liver function looks pretty normal. They have never done a liver biopsy but they did a test for viral loading along with a PCV and DNA test. It blindsided me to be going through this cancer stuff then find out I had Hep C on top of it. My viral loading was fairly low.

Just a quick comment while I am at MDACC and am really tight for time. 28% of all stage one and two SCC's have occult mets to the cervical nodes of the neck. For this reason at many major cancer centers, even early stage lesions get limited radiation to the neck nodes, a known route of mets, and/or a neck dissection to ensure that those areas are free from malignancy. Gary is part right, there are occult oral cancers, or even cancers in general where we see the cancer first in an area of metastasis, but there is poor indication of where the primary is. But in surgical only solutions to oral SCC's, occult mets are the biggest problem. Surgeons who claim that they "got it all with clean margins" are doing a disservice to patients if they do not refer that patient to a radiation oncologist that they interface with. It is a big decision for both the patient and the doctors to decide if you are one of those one-in-four individuals in which an original micro met, which is not detectable through a CT or MRI, is something they should chase and deal with. Having an unclean margin is certainly not something that I personally would want to live with. That is not going to go away on its own, and needs to be dealt with. But this issue that anything that appears a year later is a recurrence is BS. One quarter of those are the original disease that was not dealt with completely the first time around. Then you have the issue of secondary primaries, which would include a recurrence in a site distant from the original tumor