Skin cancer gene

FormerMember
FormerMember
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I have history of many skin cancers, basal and squamous and currently have a forehead flap to my nose for invasive squamous that grew in 4 weeks.  I have another Mohs scheduled in couple weeks to hairline for another squamous. My doctor says I have the skin cancer gene and will get more. Does anyone know about DNA repair enzyme or nicotinamide? Does anyone take Heliocare pills? I’m looking for answers and would love to prevent further skin cancers. I am not a sun worshipper and use spf and almost always wear a hat. I have not had a sunburn in very long time. What else can I be doing? 

  • Hi  

    I can understand why you'd want to be prevent further skins cancers but I don't have any experience of any of the things you mention. 

    This link takes you to skin care in the sun and has useful advice. If your doctor has told you that you have the skin cancer gene has he/she talked about anything you can do specifically to reduce the possibility of future skin cancers?

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  • FormerMember
    FormerMember

    Hi

    You have certainly had more than your fair share of skin cancers.  Sorry I don't know anything about a specific gene but it does seem that fair skinned folk have a higher occurrence of skin cancers and this would have a genetic basis.

    I take vitamin 2 x 500g per day of B3 nicotinamide (not the niacin one) and I buy it from Amazon, because research has shown it can prevent about a quarter of future skin cancers. My ocular-plastic mohs surgeon told me about it. I also take vitamin D3 due to avoiding the sun and vitamin E.  All of these are taken with the blessing of my doctor.

    https://www.skincancer.org/publications/the-melanoma-letter/spring-2016-vol-34-no-1/nicotinamide

    Wishing you all the very best.

  • FormerMember
    FormerMember in reply to FormerMember

    Oops - the above should read 500mg of B3 per day. 

  • Hi

    to date I've have 5 BCC's and currently waiting for surgery on a melanoma in situ.

    Therefore I'm very interested in taking the 500g per day of B3 nicotinamide, and would be grateful if you could tell me the name and price of the product.

    Many thanks :-)

  • FormerMember
    FormerMember

    Hi, I have a history of skin cancer as well , this is my fourth in one year all nodular bcc 

    2on sculp 1on the leg and recently on my chest waiting for the syrgey to remove it 

    My doctor want me to do genetic test to check for cancer gene 

    Does any special diet or supplement help to improve skin cancer ?

  • FormerMember
    FormerMember in reply to FormerMember

    Hi everyone,

    This is a very interesting discussion.

    Kate, one of our nurses, has passed across some information about supplements and skin cancer:

    'Research has suggested B3 may slow down some skin cancers, but there's not enough to show that it prevents or cures them. You might find it helpful to read CRUK's information and discuss any supplements with your specialist before buying them as they may not be suitable for you.'

    I hope this helps. If you've got any questions, please don't hesitate to contact us at community@macmillan.org.uk.

    Best wishes,

    Jazmine

  • FormerMember
    FormerMember

    Hello Indianabecky;

    That is a lot to go through and you have my deep empathy. I had an aggressive infiltrative BCC removed from my cheek 7 years ago and then just this past December I had an extensive morpheaphorm BCC removed from my cheek and nose (with a paramedian forehead flap reconstruction).  I dread the thought of more surgeries but now I think I see another BCC on my chest.  I'm only 50 so I worry about how many more I will have.  

    My oncology dermatologist recommended 500 mg Niacinamide/Nicotinamide (B3) x 2 per day as a possible prevention.  I read the research paper on this and it seemed to have reduced recurrence by about %20 - which might not sound like a lot but is actually quite clinically significant.  I'm taking it religiously!!!! There will hopefully be more research on this in the future.  I have also heard of, what are called, "Hedgehog pathway inhibitors" that seem to also be very effective but are extremely expensive (not sure if it's covered by health plans) and seem to have some negative side effects (like hair loss).  I think these Hedgehog pathway inhibitors are the most effective and are for extensive and recurrent BCCs (and when surgery may be too risky).  I would definitely ask about it - if you google it you will find the scholarly publications.

    I wish there was a simple solution that could help us avoid these things and not have to go through all the surgeries. 

    Warm wishes

    Penelope

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Penelope,

    I have read what you have written about your experience with morpheaform bcc (both here & on the forehead flap site) & wondered if you could answer some of my questions. I was diagnosed with a nodular bcc on my cheek almost 3 years ago which was treated with photodynamic therapy by my dermatologist. Then, in late August I was again diagnosed with bcc (not a recurrence we think), this time a large infiltrative type on my nose tip. When I finally got to see the Mohs surgeon he did 5 further biopsies for bcc. They are all morpheaform & extend across one side of my nose (two large white scar-like areas I had noticed after reading about your experience), one on the bridge of my nose in a pre-existing scar from an old injury, another on my cheek & a large area with both nodular & morpheaform features above my top lip where I'd had numerous cold sores across the years. It seems that this type of almost 'hidden' bcc like to grow in sites where skin has suffered some previous damage. I know that you have said that the defect left by your Mohs surgery was extensive as mine will be, in numerous places but certainly across the bridge, entire side of my nose & adjoining cheek. I honestly can't imagine that I have enough skin on my forehead that isn't also sun damaged but hopefully a paramedian forehead flap will be possible. I have posted on that site after I was diagnosed with the one on my nose tip but now I have 5 others to contend with.

    Would you mind telling me how many times the Mohs surgeon had to go back to excise all of your bcc & how large in the defect was in cms or inches. I'm sorry to ask such invasive questions but there doesn't seem to be anyone else with extensive morpheaform bcc on these boards. I read what you wrote about your recovery & it gave me some comfort. My surgery isn't until late November as theres a huge waiting list for both the Mohs surgeon & the plastic surgeon. How are you doing now? I'm hoping for a recovery similar to yours & also that the plastic surgeon can work some magic. I have no idea where he'll get the skin from for the graft above my top lip. It's quite an extensive area of plaque. It is such a frightening time & I just want it to be over as I'm sure you understand.

    Best wishes & hope you've recovered well. I also read the research on Nicotinamide (undertaken at Sydney University not far from where I live) & am taking it religiously.

    Emily

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Emily;

    First of all, let me tell you how much empathy I have for you in our shared and strange experience.  I am so sorry you are having to face all of this but also relieved that you discovered it and have your dates for surgery.   If you are in Australia, you are in the best place for this surgery!  My plastic surgeon actually went to train in Australia (not sure where) due to the level of expertise there.  The waiting for the surgery is probably the most stressful part and I know November can't come soon enough (I also had to wait quite a while to coordinate the Mohs surgeon and the plastic surgeon).   I think cases such as ours need to be studied in more detail because I think it is only going to become more common (given shifts in the climate) and it is sadly so difficult to detect!

    I am so glad you have written and please know I will be here to lend support over these months ahead (when and if you want that or feel it is helpful).  I wish I could answer all of your questions in more detail, but all I really know is that they had to do 7 stages of excision (I was there from 7:30 am to closing time at around 5:00 pm).  I think it extended about 6 to 7 cm across.....but it is really hard to estimate (maybe 3/4 the width of my nose and then from the corner of my eye down and across my cheek about 2 cm).  I was fortunate in that the BCCs had not entered the cartilage or bone though very extensive in breadth.  Somewhat similar to your situation, the morpheaform covered most of the bridge of my nose while extending over (on my right side) to also cover an area of my cheek (where there was also nodular and infiltrative varieties).  They almost had to call in an ophthalmology plastic surgeon as the cancer had spread so close to my tear duct (1 mm away)....something we only discovered during the surgery.  If yours is extending near the eye, I recommend that you ask about what provisions they make for this during the surgery (it is only a problem if it has infiltrated the tear duct....but they have ways of dealing with this too of course!).  

    The timing of your message is interesting as today I just underwent my second round of dermabrasion for all my scars and a little scar revision surgery (for one area of my scar from a Mohs surgery reconstruction 8 years ago).   Alas, it is a long process but it does end!!! 

    The most important thing I can tell you is that - you will look normal and like yourself again!!! So please know there is definitely light at the end of this tunnel.  My Mohs and Forehead flap and cheek flap were on December 12 and 13 of last year; I had the second stage of the flap (dividing the pedicle) on January 10, Dermabrasion on March 3, and then a tweaking surgery on August 8th.   By the spring I was well on my way to looking like myself and by the summer people wouldn't notice unless it was pointed out to them.   It is amazing also what make-up can do for scars (when you're ready to wear it) and having some bangs (fringes) to cover the forehead for a while.  I will gladly share all the tricks of the trade if you like.

    I'll also be honest and say it is a very difficult experience to go through mentally and emotionally -patience, a bit of humour, and reaching out for support are very important.  Hobbies, texting with friends, watching movies, and being very self-caring are crucial through the year.  This site was also very helpful to me and I am grateful to have found such a community. Also, depending on your line of work, I would recommend taking as much time off of work as is financially possible (that was my sense of it - but I'm sure it depends on what you do for a living).  I know it is a very frightening time -please  know I am thinking of you.   I seriously felt the waiting for the surgery was the most horrid part - once the surgery is done it is a matter of time and the work towards healing (e.g., tending the wounds, eating as healthfully as possible, being super kind to yourself!).   You will heal and you will look like yourself again (though we ourselves will always remember and notice the scars and such, no one else will!).  Plastic surgeons are amazing....ask for everything they have to offer (e.g., dermabrasion, steroid injections, scar revisions, botox to help keep things static during healing etc. etc.)   And yes - let's take our Nicotinamide daily!!!!   

    Warm wishes and please write anytime!!!

    Penelope 

  • FormerMember
    FormerMember in reply to FormerMember

    Hello again. PS. I just sent you a friend request through this site in case you would like to use the private messaging service (that way I may be able to answer more personally if there are other things you would like to know).   Oh, I also recall that they often take grafts for the face from behind the ear (as it is usually a good skin match).   The body has an amazing capacity to heal and recover.  For instance, the paramedian forehead flap procedure usually leaves a section on the forehead to heal by "secondary intention" (on its own).....it is truly miraculous how this hole actually fills in and heals.....the body can rejuvenate!!!  I found it helpful to trust in the body's natural ability to mend and heal.....good to think about. 

    Warmly, P.