Diagnosed with a pre-cancerous condition... Too scared to sleep :(

[bulan]

My dermatologist diagnosed me with actinic cheilitis, a pre-cancerous condition on the lower lip.

What worries me even more than this diagnosis is that my dermatologist said she didn't want to take a biopsy. She couldn't see the lesion during our appointment because my lips were too dry. So because she couldn't see anything, she wasn't worried enough to do a biopsy.

After I came home, I moisturised my lips with a hydrating lip balm, which she recommended I use. And as soon as the dryness disappeared, the spot became visible.

I'm so frustrated and frightened. :weep: I won't see her again until the end of January (for a different condition), so I'm afraid that the lesion on my lip will become worse, or even become cancerous during that time. I'm scared that this problem won't be caught early enough.

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This is the way my lip looks: http://tinypic.com/r/f3gz79/8

I've compared my lip to this website below, and I'm afraid it looks like picture C, showing a cancerous lesion:

http://www.aaom.com/index.php?option=com_content&view=article&id=137%3Asolar-cheilitis&catid=22%3Apatient-condition-information&Itemid=120

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Anyone have experience with this? My dentist didn't see anything wrong, and my dental hygienist told me oral cancer usually looks 'angry', and that it isn't as common as people think. So that was comforting for a while.

And then, after my dermatologist confirmed the diagnosis today, I realized what I was dealing with, and I'm terrified.

More importantly, I need advice on how to deal with this. I plan to get a second opinion, and a third if needed. Also, I want to visit different dermatologists until one of them agrees to do a biopsy. What do you think?

[Canbud]

From Wiki:

"This condition is considered premalignant because it may lead to squamous cell carcinoma in about 10% of all cases. It is not possible to predict which cases will progress into SCC, so the current consensus is that all lesions should be treated.[4]

Treatment options include 5-fluorouracil, imiquimod, scalpel vermillionectomy, chemical peel, electrosurgery, and carbon dioxide laser vaporization. These curative treatments attempt to destroy or remove the damaged epithelium. All methods are associated with...a relatively low rate of recurrence."

So the good news is that the likelihood of it becoming cancer is low, it's treatable, and probably won't re-occur.

Is your derm planning on treating it?

[bulan]

Thanks, Canbud, I'm trying to see the glass half-full.

But no, my dermatologist doesn't feel a biopsy is needed. The only treatment she recommended was lip balm to help the dryness. (My bottom lip was very dry during the appointment, preventing her from seeing the problem area.)

I want a biopsy done immediately, but the fact that she turned down my request for one is adding another layer to my anxiety. From what I read, other medical professionals believe it should always be biopsied. :(

I'm not sure how to get one done quickly when my doctor doesn't think it's necessary. I'm in Ontario, Canada, in case anyone else from my area has any advice.

...I'm feeling quite scared, and appreciate anyone willing to chat with me.

---------- Post added at 03:12 ---------- Previous post was at 01:11 ----------

On a related note, I'm also curious whether anyone has experience with a biopsy on the lip or around the mouth. I hear they can leave lumpy scars, or even leave the patient's mouth looking lopsided or disfigured. My dermatologist mentioned this as a reason not to go ahead with the biopsy, especially since she didn't think the spot on my lip looked sinister... So I'm actually on the fence about pushing for a biopsy. It's so difficult to make decisions like this when I'm not an expert, yet knowing that the real expert is capable of making a mistake.

[cpe1978]

Hi Bulan

I obviously know nothing about your situation nor the condition you are talking about, but the idea of 'pushing' for treatment is a statement that you often hear from people suffering with HA. It seems to be exacerbated when someone actually has a condition of some sort. The reality is that we are all likely to pick up some health concern at some point in our lives.

My point though is that I think there has to reach a point where we trust the doctors who are qualified to make judgements. Of course there are rare examples of doctors missing things, but they are rare and their profile in the media might lead us to think otherwise. All I can say is how I hope I would handle the situation.

You say that when you visited the dermatologist that she couldn't see the mark you were talking about. Well why don't you book another appointment at a time when she will be able to now that you have the ointment? Say that you are concerned and want her to look again. The reality of medicine is that it is a balance of risk, and actually cost too (certainly in the UK). The system cannot afford to be referring people for tests all the time, but similarly for the most part tests carry risks with them too.

Take for example a CT scan. On average a CT scan (according to a BBC documentary) is likely to identify 3 benign abnormalities in a human adult. However once they are indentified they warrant further investigation and so on and so forth. You see where I am heading.

My inclination if I were in your shoes would be to have an open and frank conversation with the dermatologist, but ultimately to trust their judgement and then try and deal with the anxiety issues that prevent you from trusting their judgement in the first place.

Hope that makes sense.

[Fishmanpa]

Look, I understand your fear. I deal with it for real every time I go for a check up. Did it come back? How does everything look? I get it, I really do but I trust my doctors too... And you just have to find a way to trust yours. Sure, you can go from doctor to doctor to doctor and eventually find one that will do what you want but it only feeds your dragon. There's a anxiety sufferer I know of that is convinced he has lymphoma, and no test, including an invasive biopsy under anesthesia can convince him otherwise. His dragon has him totally whipped. Don't become that person!

I've had "pre-cancerous" moles treated or removed several times. All were tested and negative. If the doctor felt that this needed to be treated or removed, it would have happened. The fact is, you're being seen and looked after on a regular basis. "If" this becomes more of a concern, it will be addressed by the professionals. In the mean time, learning how to control your anxiety wold be the proper course of action.

Positive thoughts

[Canbud]

HA aside, If a doctor's course of action (or inaction, as the case may be) is at odds with what the general literature says is the usual course of treatment, at the very least I'd want to understand my doctor's position and/or be corrected in my thinking. The OP could bring someone without HA along, just to get an unbiased view.

[cpe1978]

True enough Canbud - but I think one of the points is that people without HA would most likely not question the doctor in the first place and certainly wouldn't know what the literature says (or whether they were even reading the right literature).

That said it does of course pay to be vigilant and you will see that I suggested another visit as something I might do to raise the concerns I had. It is a fine line thought for us with HA I think I know the poster FMP is talking about and be has been torturing himself for years. There has to come a point where not living is worse than the fear of not living if that makes sense.

[CleverLittleViper]

I wonder if the literature is dependent on some variables...as in, how "bad" the lesion is, etc. If she can barely see it (and from the pic, it doesn't look all that obvious) perhaps it doesn't warrant a biopsy. As she stated, performing a biopsy comes with some risks and if it is unnecessary, what is the point?

You can either trust the doctor that has years of training and experience in dealing with issues such as yours, or trust something you've read online or in a book.

We all want more tests so we can be "certain" but truth is, you're being seen on a regular basis so that "if" anything happens, she will deal with it. I have a "suspect" mole (I think it is, my GP does not) that I have to go back to her and see her in 2 weeks. Only because I don't know if it has changed or not, but she said it doesn't concern her at all. She told me in the unlikely instance it *is* something, it will be so early stage to render it insignificant.

SCC is very curable, *if* in the unlikely event it does graduate to that, so they will be able to treat it and cure it. In the end, 90% of cases of what you have do not turn cancerous, so what are your chances that yours will? I know where I'd put my money.

[bulan]

You say that when you visited the dermatologist that she couldn't see the mark you were talking about. Well why don't you book another appointment at a time when she will be able to now that you have the ointment?
Thanks, CPE. I did go back, and she did see the spot on my lip. She froze it, and told me she'd do a biopsy if it's still there in the new year. As far as I can tell, it's still there, so I plan to see her as soon as her office opens in January.

---------- Post added at 21:32 ---------- Previous post was at 21:30 ----------


There's a anxiety sufferer I know of that is convinced he has lymphoma, and no test, including an invasive biopsy under anesthesia can convince him otherwise. His dragon has him totally whipped. Don't become that person!
Thank you, Fishmanpa! So far my anxiety hasn't become this bad, thankfully. I've always been able to put my fears to rest once lab tests have been done. So I'll be glad once my dermatologist does the biopsy in January.

---------- Post added at 21:33 ---------- Previous post was at 21:32 ----------


HA aside, If a doctor's course of action (or inaction, as the case may be) is at odds with what the general literature says is the usual course of treatment, at the very least I'd want to understand my doctor's position and/or be corrected in my thinking. The OP could bring someone without HA along, just to get an unbiased view.

I would do the same thing. Thanks, Canbud.

---------- Post added at 21:34 ---------- Previous post was at 21:33 ----------


SCC is very curable, *if* in the unlikely event it does graduate to that, so they will be able to treat it and cure it. In the end, 90% of cases of what you have do not turn cancerous, so what are your chances that yours will? I know where I'd put my money.

Thanks, CLV! I appreciate the reassurance from you, and everyone else who has posted. :)

[MyNameIsTerry]

HA aside, If a doctor's course of action (or inaction, as the case may be) is at odds with what the general literature says is the usual course of treatment, at the very least I'd want to understand my doctor's position and/or be corrected in my thinking. The OP could bring someone without HA along, just to get an unbiased view.

Absolutely agree with you, its an old fashioned mindset to blindly entrust your health and despite issues with the rarer cases in the media, there are more common regular errors, especially with GPs.

Sometimes doctors prefer to keep things wholly which can depend on the patient but even prior to my anxiety, I would have viewed a doctor not explaining this as lazy and would have pushed for a proper answer.

It seems the OP has pushed the right way and got the right answer. But it just leaves me questioning why it took this forum and the OP to make that happen.

[mummato2]

It seems the OP had pushed the right way and got the right answer. But it just leaves me questioning why it took this forum and the OP to make that happen.

Mistrust in dr's is one of the biggest issues with many suffering health anxiety.

The media perpetuate the "early detection" message (which is valid) but once someone has something in their head (thanks to Dr Google) and then hears something contrary from a real Dr the doubt creeps in and another layer is added to the beast that is HA.

I haven't gotten to that point, I don't click on links that take me to cancer sites. I tend to trust my Dr enough to have their advice be what calms me.

I am not sure what the skin cancer media campaign is like in Canada but in Australia it is incredibly strong. I too would be concerned and understand why even something potentially cancerous would raise concern.

I'm glad this is being taken care of though bulan. Perspective is very important to keep the panic at bay. It's the fine balance of advocating your care without becoming unnecessarily panicked while there isn't a reason to panic.

Enjoy the New Year!

[bulan]

Thanks, mummato2. Yes, the need for early detection is always at the forefront of my mind, and usually the catalyst of my anxiety. It's awful!! Of course, objectively speaking, early detection is necessary to have the chance of curing serious diseases. But like you say, it leaves the door open to doubting one's doctor. I have to say, I do feel it's somewhat reasonable to question our GPs, since they don't have the training to spot all serious conditions--only the common ones. But if an experienced specialist seems to take a careful look at my situation, then I'm more likely to trust them. Also, I'm glad that I trust lab results and other tests. I can't imagine the level of anxiety I'd have if even those didn't bring a measure of reassurance.

[mummato2]

It is essential to question drs. Gone are the days when they could practice lazy medicine. We are too savvy for that in this generation!

You've had a good specialist though try to relax til Jan xx it won't turn cancerous by then - and SCC is quite curable when dealt with early (but it sounds like it won't have a chance to get to that level) 10% are fantastic odds!