First visit with the Oncologist

A couple of days ago we had our first visit with Dr. Ellis, who will be my oncologist for the upcoming months. He is housed in the brand new oncology wing at the Longview clinic part-time and works the other part-time days on Interstate in Portland, to make a fulltime schedule with Kaiser. The brand new oncology wing in Longview is quite nice and I'm as impressed as is possible for such a doubtful and scary venture. The following is a summary of our lengthy visit and then more (yes, more) of my pondering and indecisiveness about next steps. Your comments are appreciated.

The pathology, as mentioned before, has my ovarian cancer at a stage 2. Technically it's called 1A Grade 2 Staging. The agreement between all doctors is that the cancer could even be a stage 1 cancer (which is great!) however because the surgeon (Dr. Steiner) noticed and removed so many suspicious adhesions, they have decided to consider it a stage 2 cancer (even though those adhesions turned out to be negative for cancer and the margins were all clean.) Research trials are what Dr. Ellis uses to make his recommendations, and those trials are all based on pathological staging to determine outcomes.

Dr. Ellis said that it is hard to figure out treatment for someone in my position, with a possible stage one, but "talked up" to a stage 2 ovarian cancer. Should we do chemo? What kind? Should it be IV or peritoneal (sp?) How long to give it? He recommends that I do 3 cycles of chemo - each cycle 3 weeks apart. At stage 2, I currently have a 70 - 74% chance of being cancer free and it never coming back. Doing the 3 cycles of chemo can improve those chances another 5-10%. Doing chemo will attack the dividing cells and tends to do better early on (post surgery). He was careful to say that these numbers do not necessarily improve my survival rate. He recommends Carboplatin Taxol Chemotherapy, which he thinks will make me lose my hair. (Oh, my vanity. Damn it!) There are other possible side-effects, but none are known for sure until a person goes through it - except the hair loss. (Really?! Grrr...) It can cause nerve damage, but they are usually not permanent, and can cause nausea, vomiting, bone marrow anemia, increased susceptibility to infections, fatigue, tiredness, and so on. Yeah. Really talking up the case for the toxicity of chemotherapy there. He also said 90% of people with ovarian cancer are already fine with 10% going to do better with this chemo. (90% sounds good though - doesn't it?)

The only real way to determine whether the cancer returns is through potential symptoms (which would be hard to detect since many of the areas it would attack early on are already removed) and through a disease marker test (a simple blood work-up) called CA-125. Previous to my surgery, my CA-125 number was at over 500 - it should normally be under 50. We will also test my CA-125 every 3 months for the next 3 years to make sure that it doesn't adjust much.

We continue to ask each doctor the question of reasons for having had two cancers at such a young age and posed the same question to Dr. Ellis. He too had no explanation but was glad to hear of my referral to a geneticist, since a lot of research is based on heredity. He did say that there has not been much reliable research done on people with multiple cancers and the connectivity between those cancers. Most research is focused on specialty areas and are more easily done on single types of cancer. He continued to say that they know only the big stuff: don't smoke, don't drink too much, eat lots of vegetables, drink lots of water - but that it's harder to define who is more susceptible to cancers when it gets down to the details like where you've lived, what kind of work you do, and so on. (This conversation proves the need for more cancer research, so I plan to do some volunteering and donating to cancer research.)

He also talked to me about some of the foods/drinks that I can use to either stave off the cancer or to help with side-effects from chemo. For instance, 500 mg. of ginger root 3x a day will help with the nausea symptoms. Drink about 100 oz of water a day. He recommended a book by Keith Black, MD called Life Over Cancer and a few other resources.

I appreciate all the info from Dr. Ellis and particularly the sense of empowerment he gave me to make a decision about whether to even do the chemotherapy. Some people are shocked by my indecision over whether to do this chemotherapy and it would take a whole 'nother essay to explain all of my reasons, though here's a few: I told myself after my experience with radiation therapy during my bout with papillary carcinoma (the thyroid cancer) that I would never again do something like that. While I didn't promise specifically to never do chemotherapy, it WAS something that was in my head when I made that promise. I have a gut feeling too that makes me real nervous about introducing something as toxic as chemo to my body. I feel OK with the percentages that the doctor gave me without the extra percentages that chemo has to offer. I have also tended to feel that when it is my time to die, there's not much that I can do to prevent that - a few percentage points will not improve my overall chances (that doesn't make sense to the average person, only to me.) Stories of people on chemo are bad. People who do chemo die. (Yes, they also live, but the image is always of people dying. And no, they don't die because of chemo.) Chemo makes me lose my hair. Chemo scares the shit out of me. Seriously. I'm sorry, but it does. I don't wanna do it. BUT...then there's the other side, which is really pretty simple. I love my life. I love my husband, my family, my friends, my animal, my house, nature, me and everything else involved. I wanna live. I don't want cancer again. And that alone makes me think that I may end up choosing to do chemotherapy. I still haven't made my final decision. I'd love your feedback. I've gotta make this decision quickly, but I do plan to take as much time as I need in order to make the best decision for me.

So, stay tuned. More to come. And in the meantime, give me your comments and feedback. I'd love to hear from you.