Today was my meeting with the medical oncologist at Northwestern, Dr. Mark Agulnik. Here's the rundown:
My cancer is likely not genetic as it would have shown up in one or both of my parents and I've would've had an abnormal colonoscopy. This is really good news for Kate!
There are 5 options for what I can do:
1. Do nothing, but keep tabs on it with scans every 3 months.
2. Surgery, but because of where it is located it would greatly decrease my quality of life. In addition, even if they performed the surgery there is a good chance that
microscopic cells would be left behind and they could grow again and
cause the same or greater problems.
3. Radiation but, again, because of its location is not recommended. It would cause inflammation of my bowels and pelvic region resulting in all kinds of nasty side effects.
4. Chemo, but this type of cancer does not respond well to chemo.
5. Targeted drug therapy of which there are three kinds:
A. Tamoxifen and Sulindac. He does not recommend this for me as it will affect my hormone levels negatively, probably throwing me into early menopause. With the amount of stress I'm under right now, the drugs could push me into a very deep depression.
B. Sorafenib which he did not discuss much before moving on to the next drug.
C. Gleevec which is normally used to treat leukemia and GIST tumors. This is the drug he is recommending as it has had the same good effects as Tamoxifen of keeping cancer from growing without the drastic lowering of hormone levels. On this drug I will have to have weekly monitoring of my blood counts, liver, kidney, thyroid and bone marrow function. In addition I will have to have MRI scans every 3 months to be sure the tumor is indeed not growing.
His bottom line is that this is a cancer that I am going to have to manage for the rest of my life, probably with pills.
It pretty much sucks seeing that in writing.
None of today's consultation really surprised me as I had done enough research to know what was in store but last night the full weight of this diagnosis and what it will mean in terms of managing it hit me like a ton of bricks. I woke at midnight with a full-blown panic attack and proceeded to spend some one-on-one time with my head in the toilet. I was hoping I had food poisoning but since no one else was sick I chalked it up to stress. The last time I had a panic attack was when I got the infertility diagnosis and was facing that long road of needles and scans and doctor visits with no guarantee that a baby would be the result. That attack landed me in the emergency room convinced I was having a heart attack. Although last night's attack wasn't any better, I at least knew what it was and could draw on my previous yoga breathing techniques to regulate myself and eventually get back to sleep.
In case you were wondering, I did ask about combining the drug with an integrative approach of modifying my diet and taking supplements to offset some of the negative aspects of it but it was clear he was out of is depth in this area. Why is it that most doctors are never trained in basic nutrition? I can't tell you how many cancer patients were sitting in that waiting room sucking down a giant coffee or soda, eating a large sugary danish, waiting for their next chemo treatment. It astounds me that nutrition is not a basic entry level class for anyone in medicine.
Ok, enough soapbox ranting.
Since I have a few other consults as well as my Houston trip to MD Anderson ahead of me, we set our next appointment for July 13. Yep. Friday the 13th I go back to discuss the results of all my consultations and possibly start taking Gleevec. I will have my initial bloodwork done at that time too so they can get a baseline of all my organs and blood counts.
In the meantime I am drinking lots of veggie juice (Lucy's and my favorite is a mixture of kale, parsley, cilantro, lime, ginger, celery and cucumber) to get my ph levels more alkaline (my acidity level is pretty high right now--hello stress, thank you for yet another nasty side effect!), eating mostly vegan, staying away from soy and sugar which are primary foods that cancer feeds upon, and figuring out how I, who hates to even take aspirin, am ending up on drugs for the rest of my life.