Why so many horror stories of s1a recurrence?

[Gordknight]

As a newly diagnosed Melanoma patient at stage 1a. Here is my pathology report:

PROCEDURE: BIOPSY

SPECIMEN LATERALITY: Left Neck

Breslow Thickness: Favor 0.22 MM

Clark Level (not overall tumor stage): Favor II

Ulceration/max width: Not Identified

Mitotic figures: <1 per MM squared

REgression: not identified

Lymphatic Invasion: not identified

Perineural invasion: not identified

Microscopic Satellitosis: not identified

Tumor-infiltrating lymphocytes: Non-Brisk

Associsated Melanocytic Nevus: Absent

Predominant Cytology: Epitheloid

Lateral Margins: non involved (1mm)

Deep Margins: Not involved (0.5 mm)

TNM Tumor Stage: Favor T1a NX MX

Anyway after researching and listening to many people far more experienced in this than I.. people tell me my risk is extremely low and I have a 95-97% 20 year survival rate. That’s good right?

Why then are there SO many stories out there on forums and the like of people staged at 1a or 1b to then go on to stage IV within a short amount of time or even 10-20 years later? I know that 2-3% has to come from somewhere, but the way it appears online is that 90% of the people with stage 1a get boned later down the line. Thoughts? Going out of my mind here. Doesnt help that I am already a hypochondriac.

[TreeFrog]

Hi Gordknight,

The answer is simple (but not obvious), and I’m sure it will give you some relief.

VERY few people who have had no further issues continue to post on forums.

The ones you’re hearing from are those in the 2-3%.

You have a 97% chance of being one of those who leaves melanoma behind.

Best wishes,

~Wendy

(also in the 97%, but one of the oddballs who posts anyway, partly to address the discrepancy!)

[Gordknight]

Thanks for the reply. What I really need to do is stay off the internet. Vigilance is good.. obsession and paranoia is not. Isnt it true also that less than 10% of people diagnosed with melanoma get a second primary ever in their life?

[TreeFrog]

Hi!

Correct on all counts. It’s natural to scan the internet for info, but it can lead to information overload very easily, not to mention reading outdated stats. Yes, I understand that less than 10% ever have a new primary. Keep tabs on your skin and if you ever have one you’ll catch it even earlier than the first one.

Best wishes,

~Wendy

[cohanja]

I wish the insurance companies would pay attention to these statistics. It is extremely difficult to find life insurance even for an early stage, after a recent diagnosis (maybe after 5 or 10 years have passed). Melanoma seems to be one of those cancers that some insurance agencies will never cover. They don’t care about the odds. They may not even insure with melanoma in situ which is almost a 100% cure rate. Melanoma is just one of those outliers when it comes to cancer and it is extremely difficult to get any type of insurance (health/life) after a diagnosis regardless of stage. I know even AFLAC considers any lesion that is Clark’s Level III or greater to be “internal cancer”. They don’t even ask about depth.

[cohanja]

I worry about the exact same thing – the examples of early stage that progressed. I can tell you what I’ve been told over again is that you should realize that the forums are heavily tilted to those who had unfortunate outcomes. Very few people who had thin melanomas excised 10 or 20 years ago spend much time thinking about it. They are busy dealing with their present lives. So you are not going to see them posting about their thin lesions that are not recurring.

If you went to the Highway Patrol and read their fatal accident ledgers, you would think that your driving a car involves a high probabilty of a deadly collision. Early stage does not have a100% survival rate so someone has to be in those small percentages. The ones who are are the ones most likely to post. The others have moved on with life.

So online forums are a “false sample.” Obviously some people have diagnoses of early stage who do go on to have the cancer spread, but I don’t think you can use the online board as a statistical indicator of how often this happens.

That is what I’ve been told many times, but I do still worry about it happening.

[Catherine Poole]

The usual reason for someone with a low risk melanoma to become high risk is the proper pathology was not done in the first place. There are good and bad pathologies and the experts are out there, but there are human errors. I’ve seen it where a low risk patient progressed and another melanoma expert looked at the slides and the prognosis changed. Hence, the peace of mind can come from a second opinion of the pathology, not matter who did the first.

I am another to add to the ranks of fairly low risk, .76 with mitosis over 1mm, 26 years free of melanoma.

Have to make each day count no matter what! (or each moment if you can)

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