Today was a good doctor day.
I had my 1st appointment at 8:15 this morning in Salem (about a half hour away) and it was my second opinion with a new oncologist. I had heard that is Dr. was a Christian, but I also went into this meeting fully prepared to have to plead my case for the DD (dense dose) chemo and addition of Taxol to the AC. As described in my previous blog I had done some research on both of these items and felt hope at the results these additional treatments seem to be offering in lessening the chance of recurrence. My first oncologist said these studies had not changed the standard protocol at all and had not indicated a change in outcome. The more I thought about this, the more I realized, what he was saying is, "if you are going to get your cancer back and die from it, these things will not change that." What I realized is that though these things may not change the final outcome they do a great deal in prolonging or delaying that outcome. In the worst case scenario the cancer comes back (which I believe in my heart of hearts that it won't, but I have to at least entertain the thought) if I do the first doctor's suggestion of treatment, it could kill me in 10 years, but adding these additional things I could push that recurrence back to maybe 15 years, no one really knows. The really big thing that also matters is that no one knows how far the research and cure options will have come in 5 extra years. So yes, my options may not change my ultimate outcome with today's knowledge, but my additional aggressiveness may very well change my outcome with tomorrow's advances. If you look at pure numbers alone, if I do no additional treatment, my chance of recurrence for my age is 30%. With AC chemo alone its 20%, with the addition of Taxol its 15%, with the DD and possible later treatments it is reduced to as little as 12%. I will take those odds.
Let me digress for a moment to talk about the value of being your own best advocate for care. I walked into this dr.'s office armed with a full arsensol of current research, a full understanding of my type of cancer (THIS IS KEY, KNOW YOUR ENEMY) and a general understanding of the pros, cons, risks and side effects my options included. My Dr. laughed at me that I was the first patient he had every had that came with my own personal print out of a treatment module that is supposed to be only available to Drs. (yes, unofficially, for registration purposes, as of yesterday there is a website that now believes I am Dr. Kat Werner) However, the module I printed out was the exact same computer module that he used to determine my treatment plan. It pays, sometimes with your very life, to be your own best doctor and researcher.
All this being said, it took no convincing, this new oncologist, Dr. Fintel, agreed exactly with my treatment suggestions for exactly the reasons I decided to do them. So he is officially my new oncologist. I will start with 4 rounds of DD AC (dense dose AC) that is chemo once every two weeks, closer together than my original treatment with the same amount of chemo, (that is why it is much more intense, your body has less time to recover between hits) followed by 4 rounds of taxol or taxane. The frequency of the taxol will be decided after the AC. Getting this in DD is not as important. So at the maximum at this point we are assuming I will have 20 weeks of chemo.
Dr. Fintel also addressed to other major issues that my first Dr. had dismissed or ignored. First, Dr. Fintel insists I have an internal line or porta-cath put in. This is a temporary line (for the duration of my treatment) that is surgically implanted in my arm that ties in directly to my arteries to administer my meds. Chemo is rough on the veins and this will eliminate me losing most of my good veins in my arms as they search for a new one to use each treatment. Also, this will prevent me from having arms that look like I am a drug user for the rest of my life. This is a half day out patient procedure that he will do himself (yes, I will be knocked out for them to do it). So my start of chemo will now be determined by when they can put that in. They can start chemo as soon as the next day. I will let you know when I do.
Secondly, Dr. Fintel addressed the issue of future hysterectomy. I asked him when he recommended I do this and he responded, "Well that depends, are you done having kids yet?" I said, "what do you mean, I thought I shouldn't have any more kids because of the cancer recurrence." To which he said, "No, if you were hormone positive (estrogen and progesterone) then I would recommend against it, but since you are hormone negative not only does pregnancy not have anything to do with recurrence, but there are some recent studies that suggest pregnancy in hormone negative women after cancer has decreased their chance of recurrence." I thought he was going to have to scrap me off the floor. I had completely prepared myself for the end of my child bearing. I had rationalized through it, tried to convince myself that it was for the best and tried not to think about it. Now, he was telling me we could think about it as a someday possibility again. Obviously this is a discussion for another time, and won't be considered until 2-3 years after treatment, but even the hope of the possibility gives me warm fuzzies again. I said to Jeff just last night that it was the one thing I was most sad about losing in all this, and I couldn't help but look around our family and feel like someone is still missing. He said on my last kid, during my last C-section, just ask my OB to do a full hysterectomy and I would be done with it.
Now you can see why it was a good Doctor day.
love
Kat
Monday, July 24, 2006
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2 comments:
three cheers for the good doctor day!!!!!!!!
kat
god is good in so many ways..it pays to research and it pays to be stubborn,,,that good old BERNARD gene is coming out of you..i am so proud of you and happy for and your family. i know deep in my heart that you are going to live a good and healthy life young lady...three cheers for KAT..LOVE YOU TONS..aunt joanie ..
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