@RejectedAgain sorry, I didn't know it was Nf1, I would have chosen the words differently.
So, your medical emergency, your cancer scare, is it the finding out about your Nf or is there a specific mass or blood result that cause worry?
The good news in all this is that by adopting a specific way of eating you might lose some of your neurofibromas, what you called lipomas. I have very few, and they are tiny. I had more, but they went away with diet.
I was at the beach yesterday in a bikini (I am in Sydney, it was 40 degrees yesterday) and you can't tell I have Nf1.
The urgency here is you becoming educated about Nf1, what it does, what are the manifestations and their danger , and most importantly what you could and should do about these.
Have you been seen at an Nf1 clinic ?
So I am going to give you a very brief summary.
The NF1 gene, like the BRCA1 gene, belongs to the tumour suppresso genes. We have 65 of them and they protect us against tumours. The famous Angelina Jolie gene protects agains breast cancer, our the NF1 gene protects us against nerve sheath tumours. To understand what the nerve sheath is, think about your phone charger. There is a plastic covering around the wires that sometimes break and you can see the wires within. The plastic covering the cable wires is the nerve sheath: the covering of the nerves.
So neither in the case of NF1 or BRCA1, does the gene cause tumours and cancers, it is where there is a mutation and it is defective that it can't play its role properly.
The way Nf1 acts is by down-regulating a cellular pathways called RAS which is involved in cell proliferation, growth and cell death. Cells grow all the time, and in our case, they miss the stop signal, they also forget to die, and so we develop tumour on our nerves. Problems is we have nerves everywhere, on the skin, on the organs, brain....
This will explain the internal and external tumours. A cancer is an out of control growth of abnormal cells. None of your fibromas will become cancerous. But your messed - up pathway, having the "grow ! grow! Grow! " signal always switch on, will favour cancer cells too.
Second good news, is that if you look at images of the RAS pathway , it will take you a while to locate NF1 because it is. very busy pathway . Nothing in the body works in isolation. Other enzymes and proteins can step in and compensate.
With diet you can do two things. Try to inhibit and silence the "GROW!!" signals by acting on mTOR and insulin, so low protein and low sugar, and activate all the repair mechanism in the body for DNA damage, cell mutation, encouraging cell death (apoptosis) with a very polyphenols rich diet.
With Nf1 and BRCA1 and all the other tumour suppressor gene mutations, they are not good at their job, like a drunk goal keeper, so you need to increase the defence and-possibly act on the attacks as well, so everything that will cause damaged cells, wrong food such as cancer inducing ones (sugar, bacon, charred meats, processed foods), lack of exercise and so on.
Acting on both to protect your cells, will protect you from both an increase in cutaneous neurofibromas and future cancers.
So the exercise is not for the benefit of weightloss, but to silence growth factors and rejuvenate cells. So a big yes to exercise. Especially because we have bone issue and have weak bones. So to prevent osteoporosis, you need to start using them now.
You will find out, that eating for saving your life is the greatest motivator ever.
What about your kids, are you going to do the genetic testing for them?
@BIWI so since has found out that whole be it soy or carrot is protective whereas any extract be it phytoestrogen or betacarotene is cancer inducing. Somehow the story bout soy sticked and soy became the devil, yet the one about betacarotene and lung cancer didn't and people are not worried about carrots. Whole soy or food prepared with soy such as tofu, soy milk is protective. Extracting a component is a very different process. More here nutritionfacts.org/video/is-soy-healthy-for-breast-cancer-survivors/