I have a genetic syndrome called NF1 which belongs to the cancer-inducing syndromes family.We lack the tumour inhibitor gene and as a result can't stop abnormal growths, both benign or malignant.
Nf1 is right next to the BRCA1/2 gene on the same arm of the same chromosome 17.
Our big difference is that we have a quite dramatic skin manifestations and we are more generous when it comes to the type of cancer we are prone of getting and many are not surgically removable. We have less treatment options also as radiotherapy is to be avoided as we get cancer from it. For all these reasons, I spent a fair two years actively researching and reading on the genetics of cancer.
To prevent the skin neurofibromas expansion and cancer, I changed my diet at the beginning of the year following papers I had read on clinical trials going on in Canada for the BRCA 1 and 2 gene defect. This study is called LIBRE. You can have some details here
www.ncbi.nlm.nih.gov/pmc/articles/PMC4966818/ . If you expand your research from the PUBMED suggested articles you will see that many countries consider life-style intervention. If it worked for BRCA, why not try it for NF1?
I did some courses from the John Hopkins and Melbourne Uni on the biology of cancer and epigenetics of cancers and what I have taken from these is that the gene activation is dependent on the environment. Both courses are on Coursera for free. A Yale university course on Breast cancer is starting next week. I have already enrolled www.coursera.org/learn/breast-cancer-causes-prevention . Week 2 is on gene predisposition . When enrolling, just select Auditing the course and not receiving a certificate. This gives you access for free.
I am linking an italian study that came out this summer on diet intervention for NF1 www.mdpi.com/2072-6643/9/7/783/htm, In our case, our skin can flag if something works or not. A tumour is a tumour. It needs feeding and blood. Food can either favour or block abnormal cells proliferation.
Before taking drastic measures such as removing organs, I recommend you take six months to educate yourself on how cancer grows. Read the existing books, such as anti cancer a new way of life by Servan-schreiber, investigate the works of the head of Molecular lab in Canada Richard Beliveau www.richardbeliveau.org/en/cancer-prevention.html and from there change your diet and lifestyle. While you read, do all your check ups, exams, visit and listen to the experts. But it wouldn't harm you to do a couple of changes to your lifestyle while you do so.
I went extremely cautious and became a vegan. I eat my bodyweight (kidding, but somedays it feels like) in vegetables, berries and supplement with curcumin , and a couple more things. It is not so much about not eating certain foods - milk, ham , processed food...- but as eating enough polyphenols to make a difference. So not a doritos-oreos or 50 shades of beige vegan, but cauliflower is my middle name type. I don't eat what comes out of a (factory) plant but a plant.
When I was diagnosed, everyone told me to stay off the internet. I do not agree. I stay off blogs and sites that sell stuff, but I went on University websites, spent a lot of time at the State library and on pubmed. Nf1 is a big ignored dinosaur and my finding were later confirmed by the Italian study I linked. Information is key. Information on lifestyle but also on diagnostic. MRI is to be favoured to mammogram for example.
A defect in a gene gives us the predisposition, it is in our hands to put hurdles in the path of cancer.
There is a massive gap between current research and medical protocol. It takes years sometimes even a decade for a finding to be transformed into state-funded health protocol. One trial must be confirmed by several others and many of these are based on long observation times. When it come to genetic syndrome, it is even worse. Genes cannot be changed so wait for the problem and deal with it is the current attitude. I am not waiting for cancer to occur. I actively do my best to prevent it. The epigenetic says gene expression can be activated or silenced. I give it a try. Eating berries instead of ice-cream or cherry tomatoes instead of chips can only be beneficial.