Diagnosis Email

Friends,

As some of you know, last week I was diagnosed with liver cancer. Yesterday, I met with my oncologist to have a more in-depth conversation since I had a million questions and few answers. The news was positive, all things considered. I have a somewhat rare form of liver cancer called fibrolamellar carcinoma. I am in stage 4 of the disease because it has metastesized to a couple lymphnodes surrounding the liver and has also moved into a few sections of my lungs. Mestatses to these regions is common for fibrolamellar cancer. This type of cancer also occurs in a much younger population (ave age of 23) than does other liver cancers (ave age of 60) and because of the younger age of the patients, is treated very aggressively and has a slightly better prognosis than most liver cancers.

The treatment is a combination of surgery and chemotherapy. (Radiation or freezing the tumors has proven to be ineffective for all fibrolamellar cases.) During surgery, the doctors will cut out as many of the cancer cells as they can. Although most patients experience tumor re-growth, if they're physically able, the doctors cut out the tumors again. These surgeries, coupled with the chemotherapy, have shown the ability to prolong life for fibrolamellar patients. Unfortunately, none of current treatment options are 'a cure'.

Some want to know odds and statistics. I think it's important to know them to have perspective, but keep in mind, I am far from normal (ha...ha) or a statistic. I am someone who hates to lose and will go down kicking and screaming before this cancer can get the best of me. The standard survival rate 5 years from diagnosis is 7% for liver cancer. For fibrolamellar, it is 25-30% and jumps up to 60% if you are a surgery candidate. Everything's relative, but the possibility of 4 extra years is completely uplifting when just a week ago I was given less than a year because they weren't sure what type of liver cancer I had. But here's the thing, medicine attracts the very best and brightest. If I can prolong life for the next couple years, whose to say there won’t be a cure by then?!

Now that I know more about my disease, my oncologist and I have also come up with a plan. The best surgeon for removing liver cancers is at the Mayo Clinic in Minnesota. His name is Dr. David Nagorney. I have called the Mayo Clinic and have an appointment on 5/27. I must first meet with a general gastroenterologist to determine if I qualify for surgery before I can see Dr. Nagorney. Once I'm there, I am going to try to convince (okay, maybe demand) them to take my case. Surgery isn't without risks, but neither is driving to the grocery store. I am also starting chemotherapy today. This isn't like IV chemotherapy Hollywood has painted the picture of, it's a pill I take twice a day. The pill is called Nexavar, invented by the good German doctors at Bayer, and cuts off the blood to the tumors to hopefully prevent them from growing or spreading. All the known common side effects for chemo can potentially happen with this pill, but most patients report little to not side effects. If the doctors accept my case and do surgery, I will also look to participate in clinical trials after I recover.

This plan is just what my doctor and I have come up with based on the research we have done. I ask that you continue to do research and forward me anything you find. I want to know as much as I can and by no means think that what I've described above is the only course of action.

In the meantime I’m planning to return to work on Monday, if the chemo doesn’t affect me too much, because I feel healthy. Why work at a time like this? Well, I work with an amazing bunch of people and normalcy is a good thing, it occupies the mind with what I was doing before cancer.

Stepping back from my illness, I want to take a moment to say thank you. The immense amount of well wishes, support, and prayers has been truly humbling for me. It’s a great feeling to know that I have so many quality people in my corner, rooting me on. It fuels my fire and is the reason I want to prolong life – not for the pursuit of things, but so I can continue to have these relationships and be as much a part of your life as you have been mine.

In closing, I hope you've read my email with hope. Hope is a good thing, maybe even the best of things. However, hope can be blind if not combined with positive will. Positive will to make things that you hope for happen. And that's what I will try to do. Hope for the best and try my damnedest to make that hope into reality.

Rhone