The hard questions – how I explain a really complicated cancer and treatment to my friends and family

The hard questions – how I explain a really complicated cancer and treatment to my friends and family

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I’ve just been diagnosed with stage 3 melanoma and begin frantically searching the internet.  Basal cell carcinoma, squamous cell carcinoma, melanoma – all with very different outcomes, under the heading skin cancer.  I finally stumble upon the 10-year survival statistic calculator.  Plug in my age, the site of my melanoma, how thick it is, ulceration and mitotic rate, any spread to lymph nodes or distant sites in the body and I get the magic percentage – the odds I will still be alive 10 years from now.

I barely understand.  This is heavy.  How do I tell people?  The questions start flying.

Why did you get this?

It was probably a mix of sun exposure, using tanning beds and genetics.  There is no such thing as a base tan.  Stay out of the sun and use sunscreen.  

What did your mole look like?

Mine was tan colored, but began to grow.  If there is anything new, growing, bleeding or itchy you should have it looked at and potentially removed.  The classic teaching is asymmetric, irregular borders, multicolored or black, diameter bigger than a pencil eraser, or evolving (A, B, C, D, E).  

You’ve had surgery to remove the skin cancer, it is gone right?  

Well, the parts we can see are gone.  The spot is removed, and 2cm around it to make sure there is no microscopic remnants.  I’ve had lymph nodes removed and there is nothing they can see on the CT scans.  So, for now, I’m “cured”.  I use this word with caution.  The chance that my melanoma will come back is high, 30-60%, so I am optimistic that I will be ok, but I am guarded. 

But it’s just skin cancer?

It depends what kind you have – melanoma is the most aggressive of the skin cancers.  If caught when it is thin in the early stages – removing the spot can be curative.  If it is thick or spread to other sites in the body it is more difficult to treat.

But I have a friend who had (insert cancer here) and they’re ok.

Melanoma is very different from other cancers, like lymphoma or breast cancers, in how we treat it.  It doesn’t respond well, or at all, to chemotherapy and radiation like other types of cancers.  The best treatment is using the body’s own immune system to recognize the melanoma and “attack” it.  In the past few years there have been several new drugs that have come out that are working better than any other treatments we’ve had before, especially in stage 4 melanoma, but they are very expensive for the provinces to pay for.

What kind of treatment is available for stage 3 melanoma that has been surgically removed (resected)?

Currently, some of the options in Canada are drug trials or interferon (which is a controversial treatment).  I opted for interferon.

But you don’t look sick?

I’m on a biological therapy, which is not traditional chemotherapy, and the side effects are slightly different.  I still feel very sick, and need to do the treatment for a year.

Is the treatment working?

Maybe.  We won’t know unless the cancer comes back, or doesn’t.  It is called adjuvant therapy.  As far as the CT scans can see, I was cured from the cancer after my surgery.  But the chance that it can come back (because of microscopic deposits we can’t see) is high.  I hope the interferon does work, but I am cautiously optimistic.

You’ll be ok, right?

Yes.  (Is my usual answer to keep the mood light, what I really should say is):

Maybe.  I was told I have a 50% chance of living 5 more years.  

How do you tell that to your family and friends when you are only in your mid-twenties?  I take all the statistics with a skeptical eye, many of those people included in those statistics are very old, or have other diseases.  Up until a few years ago there were not any good treatments for melanoma, I expect these numbers to change for the better because of our new treatments.  Odds and statistics won’t tell you what your own personal outcome will be – no one can predict that.

One of the most challenging parts of explaining this cancer is that the answer is often “no-one knows for sure”, so I try my best to field questions without making things too complicated or getting into the nitty gritty.  Melanoma is serious and scary, but also at a point where there are lots of new exciting treatments, and with that comes hope.

As a closing note I would like to extend a big thank you to Kathy and the SYSF team for their education and support throughout my treatment.

Sam

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