About 35% of people with rhabdomyrosarcoma develop it in the head and neck region, though it can occur in most other areas of the body. It is usually found in children under 15, which I assume was were you were with your first battle with this. As you likely know there are four types of this, one which is far more dangerous (they all are, but one is very aggressive). None of them are actually considered oral cancers. However, you are welcome here, though the posters will have little experience with your disease, and therefore likely less than helpful.

But what you are hearing here in the replies so far, is that we are a group of people that believe primarily in science, what has evidence of efficacy in effective control, if not cure of our disease. There is NO PUBLISHED EVIDENCE that any of your current choices to avoid conventional treatments and try to boost your natural defenses have any impact on the disease at all. As you have stated in your first post, yours is getting bigger, not even staying the same. This should tell you something. That your path is not working. In cancers the only opportunities we have to beat them, are when they are small enough for existing proven treatments to have effect. By the time this has grown enough, there will be no going back and saying -well I guess I will have that chemo, radiation, surgery or whatever now. It will be too late to have those things work for you. I do not say this to seem mean spirited or less than understanding of your fear or desire to not experience the difficulty of conventional treatments. I hope that it makes you seriously think about what you are doing.

Certainly your family, your doctors for sure, must be encouraging you to not go down the path you are currently on. You have seen that while people here emotionally will listen, it is already obvious that they feel like you need to get back on the path of conventional treatment no matter how difficult you find that path. We have had posters here before with oral cancers that have posted about making choices that involved similar directions as yours. It is hard for any of us to feel empathy for someone who willingly chooses something which has no evidence of positive impact, and support them in this direction. Do not be surprised if those here are less than supportive of your decisions.

I do not wish to seem harsh or dismissive. Since there is likely not a support group for your disease, you are welcome here as it is actually happening in your oral environment, though not technically one of our oral cancer diseases. But we do not have much information to assist you, nor will you find lots of people supporting this decision of yours. You may find this all less than warm and fuzzy.... The last caveat is; while you are certainly entitled to your opinions and directions, made with all the experience of a very young man, please do not post to others any encouragement that they should follow your path of non conventional treatments on this board.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.