Hi there ...

I am new to all of this. 58yo F. Was diagnosed w/SCC of inside lower lip. Stage I. Had a biopsy and 2 wks later they removed more tissue. Got a "Clear Margins". No additional treatment.

Also no predetermining reasons to have had it in the first place ... never smoked, chewed, no drinks for decades, no sun exposure, no HPV, nothing.

My 2 month checkup is Wednesday.

On Thanksgiving, I bit the side of my tongue a few times. So I looked at it closely. I swore it looked like the tongue tissue had a round area where I bit. Now it looks real pale to me.

Quite scared.

It is pretty scary for sure, but you have found the right place for the very latest information and to connect with others who have had similar experiences to share. Sounds like the diagnoses of Stage 1 was done early and that's a good thing. So often, there are no outward symptoms or pain connected with SCC. Between now and Wednesday when you have your check up, you could check the links on the main page of this forum at: http://oralcancerfoundation.org as well as the search areas there and on this page (upper right of this page) for specific topics. This may help you to get your questions ready for the doctor on Wednesday. Until then, it helps to keep busy with anything you like to do so that you can try and lessen the stress level. Let us hear how the check up goes.

Oldhippie,

Actually there are many who contract this cancer that present themselves just like you so you are not alone. These presentations started to show up on this site about 3 years ago and I have asked many docs and no one can give me an answer other than perhaps another virus.

Let's pray it doesn't return.

Once one had been diagnosed with cancer and even when it had been successfully treated, it is difficult and close to impossible to completely free oneself from the fear that it may come back. Some people are better than others in living with this uncertainty, and those who adjust well to this reality end up being happier and are more able to go on with their lives than those who do not.

What makes it difficult is that PET and CT can only detect cancer that is larger than 1 centimeter and physicians can miss a small lesion that is located at a difficult to visualize site.

We have to accept the reality that we would always have to live with the threat of cancer�s return and that physical examination and vigilance would be the best way of monitoring my condition. Accepting this may be difficult, but is worth while.

What helps me cope with my worries is that I try to first wait a few days before I seek medical help unless it is an urgent problem. Happily the majority of my problems and symptoms seem to go away within this time. I also learned not to panic but use my past experience and the knowledge that I had gained about my illness and try to rationalize and understand what I feel and experience.

I hope that I you too will get better in coping with the uncertain future over time and learn to accept it and live with it striking a balance between fear and acceptance.

I Brook MD Blog Site- http://dribrook.blogspot.com/

Oldhippie,

I've done the same as you bitten my tongue, because there isn't much feeling, it scared me too.

I still get scared if I see something on my tongue, lips and gums that wasn't there the day before. I do check every day sometimes more. I start poking around to see if I can feel a lump, it's crazy. A few days later it's gone. Then something else pops up then it disappears.

You think of the cancer every day, your afraid it's going to come back full blown. There isn't a day that goes by that I don't think about it.

Glad you have an appointment Wed. it will put your mind to rest keep us posted.

Connie

I used to regularly get apthous ulcers (cancer sores). They'd sometimes happen after I bit my cheek or lip. As a way to help them heal faster, a doctor at one point prescribed a topical steroid to put on the sore - it healed them up much faster than if they'd been on their own.

I don't know how you feel about taking extra medications, or topical steroids, but if the sores are causing you a lot of distress, maybe the docs would find it appropriate to prescribe you something similar. Maybe having something you know you can do, at home, to help it go away even faster, will ease your mind.

(I eventually I figured out that I didn't get cancer sores if I stopped eating gluten, but the topical steroid was still a useful resource for me at a certain time.)

Good luck,

Rahel

Wow! I can't believe the great support I've gotten here. Thanks to everyone.

It turns out my appointment is tomorrow AM, not Wednesday. Got my gastro appt mixed with my ENT appt. (possible esophageal cancer ... turned out it was benign)

So I'll know by tomorrow at this time. I'll check the links in the mean time.

I guess the fact that my Stage I was a bit into the tissue (one level above in situ - I forget what its called just now) and the fact that I kept biting at it until the docs decided about my insurance makes me think it might have spread before it was excised.

Davidcpa, I wondered about a virus too. But I've been in a 17 yr safe relationship so I'm thinking not HPV.

Thanks again for your support.

HPV+ SCC usually starts in the Base of Tongue or Tonsils so I doubt it's HPV related.

Just got back from the Dr. He said my tongue looks normal and everything else is good with my post-op.

Sooooo relieved ... I don't care if it is pouring down rain outside, I might just dance around anyway!!

I'm scheduled to come back at the end of January to see whether my lip has "filled in" any more or if I should have some cosmetic plastic surgery.

But all things considered, being cancer-free is much more valuable to me than whether my lips look like Angelina Jolies.

Thanks again for all your help.

Congrats on the great news

You are right that being cancer free is so much better than being scar free.

Im also in PA. Im in the Allentown area. There are several of us around Allentown and several more who are around Phila. We have gotten together at the local walks to help support OCF. Its always nice to meet other oral cancer survivors.

Best of luck with your other upcoming appointments.

Once one had been diagnosed with cancer and even when it had been successfully treated, it is difficult and close to impossible to completely free oneself from the fear that it may come back. Some people are better than others in living with this uncertainty, and those who adjust well to this reality end up being happier and are more able to go on with their lives than those who do not.

We have to accept the reality that we would always have to live with the threat of cancer�s return and that physical examination and vigilance would be the best way of monitoring my condition. Accepting this may be difficult, but is worth while.

What helps me cope with my worries is that I try to first wait a few days before I seek medical help unless it is an urgent problem. Happily the majority of my problems and symptoms seem to go away within this time. I also learned not to panic but use my past experience and the knowledge that I had gained about my illness and try to rationalize and understand what I feel and experience.

I hope that over time you will get better in coping with the uncertain future and learn to accept it and live with it striking a balance between fear and acceptance.

I Brook MD