More Melanoma Developments

I’m back in this coming week to have more moles removed, plus there might be a trip to Leeds coming up for genetic testing for skin cancer. The latest developments on the Melanoma front are a little worrying and remind me that this type of cancer rarely just goes away.

“We really now need to figure out what role genetics are playing here”

I was always at risk of more primary Melanoma’s and it’s because I’ve now had three in total that we are thinking along the lines of my cancer having a genetic cause. Sure the sun is gonna play a role somewhere, but we really now need to figure out what role genetics are playing here.

Atypical Mole Syndrome
So what is the most concerning is that a top consultant at the QE, raised the potential of there being a genetic mutation which causes possible Melanoma to present as normal looking moles. In this respect it makes my cancer even more dangerous because I could present a concern but because it “looks fine” it could be left in my skin to grow.

“In laymans terms, I could be concerned about a mole which is Atypical, but not be concerned about a mole that is a Melanoma”

I’ve had at least 5 other moles taken out over the past 7 years that came back as being “Atypical Moles”, which are benign growths that “look like Melanoma” but aren’t. In laymans terms, I could be concerned about a mole which is Atypical and normal, but not be concerned about a mole that is a Melanoma and elect to have the normal one taken out at the expense of leaving the cancerous one in there to grow. On top of this, Atypical moles, present a nice little home for skin cancer to grow into and take over.

As ever, information on Melanoma isn’t the best, so I’ve had to web search and read my Melanoma books. Resources being the way they are in the NHS, I might now need to start traveling away from home for some answers. I’ve been to Cambridge before but that was to check out a scanning technology.

Genetic Testing in Leeds
Having red hair increases a persons risk of developing Melanoma (the receptor Melanocortin-1 gives us our colouration). However there seems to be two other genes at play here and depending on which one has gone wrong it can lead to “obvious Melanomas” or it can lead to “sneaky stealth Melanomas”.

“I may have the genetic mutation that leads to sneaky Melanoma”

I may have the genetic mutation that leads to sneaky Melanoma, that can be left in the skin longer and thus be more dangerous. Unfortunately too the mutation we suspect, can sometimes be seen in cases where the cancer has spread to the brain.

Another Brain Scan in Mind
Neither myself or my hospital are entertaining the idea that my Narcolepsy could have been triggered by a brain tumor, but this is all in the mix and I’m actually thankful that my consultant will keep a fresh MRI head scan in mind. I had a brain scan in January 2010 just to make absolutely sure that my then mystery sleep disorder wasn’t linked to a return of my cancer in a bad place.

“Neither myself or my hospital are entertaining the idea that my Narcolepsy could have been triggered by a brain tumor”

That is however the way Malignant Melanoma works, a small spot on the skin can reach into the blood stream. The Nodular Melanoma I had was bleeding *a lot* and there is always that lifetime risk I have that we didn’t get it out before it spread. One thing that gives me confidence it hasn’t is that, apart from the Narcolepsy, I haven’t had any issues relating to vital organs. You may think this looks overly dramatic, but if you did know about skin cancer like I know, you’d have this realistic assessment too.

So far my lymph glands have been fine, but I know for a fact my Thyroid gland has not. My chest X-Rays have been fine but we are worried about increasing my radiation exposure. Scans for cancer, can lead to cancer developing.

How To Alert My Parents and What About My Kids?
I got these genes from somewhere, and so my parents could carry an increased risk for this type of cancer. Add to this, I may pro-create with a fellow red head, I mean … I need to find out what risk there is to our children if we have any.

“It poses an emotional issue for myself and the closest people to me and I’m keen to equip myself with some advice on how to handle these emotions”

It poses an emotional issue for myself and the closest people to me and I’m keen to equip myself with some advice on how to handle these emotions. My parents may feel guilt, even though they were smart about sunscreen when I was a child. I could feel a bit uneasy about passing these genes on. So even though my cancer stage hasn’t changed, it hasn’t gone terminal, it has come back into the forefront at a time when I’m trying to get on top of the Narcolepsy.

Dear 16 Year Old Me
Anyone who is worried about their risk of skin cancer, shouldn’t fear. You should learn all you can about it, make sure your sunscreen contains UVA 5 star, if it doesn’t, throw it in the bin please. If I could go back to tell 16 year old me about Melanoma, this following video would be a good idea of the conversation. I’m scared, but I know stuff, which makes it easier to deal with, but no less unnerving, Melanoma never goes away, once you have it, you have it.