Skin cancer gene

Hello Penelope,

I cannot thank you enough for your response & offer of ongoing communication. As you would remember the waiting for treatment is sometimes worse than the treatment itself.

Your experience is so similar to mine although mine is not a recurrence and I am in my mid sixties & retired so don't have the stress of taking time off work.

Initially, my diagnosis was for a nodulo-infiltrative carcinoma on my nose tip & I was told by the plastic surgeon that I would need a forehead flap due to the extent of the lesion. I wrote about that experience on the 'forehead flap group' & that was where I read about your experience of morpheaform bcc & the difficulty getting it diagnosed. About 2 weeks ago I had a careful look at my face under a bright light & lo & behold could see three whitish scars on the side of my nose & a large area of yellow thickened skin across the top of my lip under the nostrils. I immediately rang to organise a skin check with the Mohs surgeon (having lost trust in my original dermatologist who had used liquid nitrogen to freeze all of these areas repeatedly!!). He found five lesions & biopsied each. He didn't pick up the morpheaform areas either until I pointed them out. he did find an area on my cheek and a new nodule that I'm hoping is bcc not Merkel cell near my nose. Ugh!! I get the results on Tuesday when the stitches come out & I'll be able to ask hime about the plan forward then.

I know you had a forehead flap for your nasal bccs but did this also extend to your cheek or did they do a separate graft or flap. I'll need a couple of approaches to cover the lesions as they are separated from one another.

Good to hear that Aussie surgeons have a positive reputation. Mine is quite young but meticulous, gentle and personable.

I'm so relieved to hear that it will all be ok at the end. Thank you for telling me that, it is extremely comforting.

I am older than you but was diagnosed with stage 1 breast cancer at your age and then another primary three years ago so I do think there is a genetic component to all of this. There is research to support this so I'd be getting mammograms & an MRI if you have dense tissue. My second tumour was not picked up on mammogram or ultrasound but I insisted on an MRI every second year.

I will post again when I know more.

Kind regards,

Emily

Penelope & Emily,

I just wanted to thank you both for sharing your thoughts and experiences. They really are insightful.

My mother passed from a melanoma nearly 3 years ago and I must admit to still being somewhat ignorant about this particular type of cancer.  My mother wasn't a sun worshipper and in fact I never saw her sunbath once so I guess it's somewhat ironic that she succumbed to this type of cancer, I myself have never been one to lay out in the sun but I'm awaiting the results of a biopsy for suspected BCC.

Please continue to share your ongoing experiences as this information is extremely useful and helpful to me

Hello Londongirl;

Thank you kindly for your message.  I am so sorry that your mother had that terrible disease and for your loss.   Yes, it is always strange to hear of people who have melanoma who never went in the sun and people with lung cancer who never smoked - cancer can strike anyone it seems.  I hope all goes well with your biopsy and that it is just a benign lesion.  Though very stressful and upsetting, we are fortunate that BCCs very rarely ever metastasize.  I hope yours is nothing but if it is, please keep in mind that it is most treatable and Mohs surgery outcomes for BCC are excellent!  

Very warmly

Penelope

Thank you  I'm feeling slightly more calm now that I've had the biopsy as it's healed up nicely in less than 2 weeks and you can't even see close up where they cut me or put the stitch.

That said,  I'm sure my bravado will go out of the window once they call me back for the result BUT I will try to keep your wise words in mind.

Hello Londongirl8,

I am so sorry to hear that your mother passed away from melanoma. It must have been such a shock for you to be facing a possible skin cancer diagnosis but there is some reassurance in knowing that if it is bcc & you have Mohs surgery you have a 98-99% chance of it never recurring, particularly when caught early as yours seems to have been.

Even so, it is very stressful waiting on the results of a biopsy. I get my results back on Tuesday when I have my stitches out & it can't come soon enough. I hope you get your results soon & that you can then feel some relief in knowing what is ahead of you. Hopefully, it will not be nearly as frightening as what is going around in your head while you wait. 

Best wishes,

Emily

Thanks Emily.  I really appreciate your reply.

You are of course absolutely right and if I were talking to someone else in my position I'd tell them to pull themselves together as, if surgery with up to a 99% success rate is the worst thing I face then I should be thanking my lucky stars. Reality is somewhat different and I haven't told any of my friends/ family about the biopsy as the first thing they'll think of is my mum and immediately jump to the worst possible conclusion / outcome. Trying to tell then it's 'only' a BCC will go in one ear and out the other. 

All the very best for Tuesday

I too have had a number of skin cancers, 3 early sccs plus 6 bccs removed in 2 years. My husband who has has had greater sun exposure than me has none. He has brown eyes and darker skin. I have blue eyes and fair skin which according to the literature makes me high risk. Both my mother and her brother developed skin cancers and my sister died this year from metastatic melanoma so strong family history. Like your doctor my Dermatologist has said I will get more. Plan has been spf 50, minimising sun exposure and covering up. He also got me to use Effudex twice daily followed a few months later by Aldara 5 days a week on my face and hands to repair damage and treat any very early bccs lurking under the surface. Horrific reaction but skin now looks smooth and younger. You don’t mention this so might be worth discussing with your doctor.

He also recommended B3 500 mg twice daily based on the research done and I take Blackmores Insolar. Found others hard to swallow. Another dermatologist recommended B3 cream. I am using Solar care at night and morning. Cheaper than my previous face cream and a good moisteriser so will keep using it. No more skin cancers for a year so fingers crossed.

Camelia,

Thank you so much for sharing your experience of skin cancer and the preventative measures you're now taking. Like your sister, my mother passed from a metastatic melanoma. It was particularly surprising as we have no history of skin cancer in our family and my mother was not a sun-worshipper. I guess cancer really doesn't discriminate 

All the best 

Emily, I have requested you as a friend on here so we can hopefully talk privately if you are willing.  I have an appointment on December 11th and I know I will be told I have BCC and/or morpheaform BCC.  I, too, have a small nodule on the tip of my nose for about a year now ... it bled at first and has grown very slightly, but is still very small and asymptomatic, no more bleeding for a long time.  In researching this and deciding to have it checked out, I, too, have found lots of areas of shiny, whitish scars on my nose, sides of my nose, next to my nostrils in the folds, going down a little towards my top lip.  I'm sick about it, because who knows to look for that?  We are all trained to look for nodules, moles, very visible lumps....I never heard of anything like this sclerosing/morpheaform cancer!  I'm so afraid that I've waited too long and that it's very extensive now, and I'm really afraid of it invading deeply into tissue, or bone, or metastasizing to distant sites.  There isn't much on the web or in these forums about this type of cancer ... is it THAT rare, or is everyone who had it dead?  One has to wonder.  I'd love to hear about your experience, your surgery, how you recovered, if they got it all, whether you are happy with surgical results, etc.  Would you mind accepting my friend request and giving me a little history so I might have an idea what might happen with me?  I would really appreciate it, thank you so much.

Cheryl

Hi Cheryl, 

So sorry for what your going through.  I think you meant this message for Emily? I have had 5 nodular BCC's on my face and one melanoma in situ on my abdomen.  It is truly scary, sleepless nights and looking on Dr Google non stop! 

I had them all removed at Hillingdon Hospital. The last two by Mohs surgery.  I've had  3 on my nose. The last one was at the side of my nose so I had a skin graft from in front of my ear.  It's been amazing the scaring is minimal, nobody would know.

I haven't had any for about 3 years now, been taking niacinamide 500 mg every day and plastering myself with SPF 50. Having said that I have a spot on my chest which is being biopsied

I feel your pain, it's not long to wait now, and it's never as bad as you think. You don't appear to have any biopsied, so try not to worry, it could be something completely different?  

Please feel free to ask me any questions, I'm more than happy to help

Kind regards

Sue