Tuesday, July 15, 2008

Ask me no questions, I'll tell you no lies

Today was my seventh 3-month follow-up oncology appointment. For those of you who don't feel like doing the math this late in the day, that's 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I've already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don't have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I've somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn't even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards - which I have not made yet. My bad. Then we got down to business. Thanks to posting here I've developed the courage to ask the questions I've been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I'm coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you've fallen into that niche of ones who sneak through.

More good news. This was working out better than I'd hoped. So I asked about the infamous Cancer 5 Year Mark. "Does that hold true for Inflammatory Breast Cancer also?"

"I'm going to say 'yes'," she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It's nice to know she's keeping her eyes open for me. I've wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It's not about drinking milk. It's about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She's also closely watching Avastin for it's benefits in preventing recurrence.

I had read about both when they came out so it's nice to know I'm keeping up well enough on my own.

I want to send a big Thank You to every one of the women at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.

2 comments:

sarah said...

l done Imstell - you DO rock survivorship!

Rosalie said...

I so relate to this. I never ask my oncologist questions. I become mute as soon as I enter the exam room. I would rather read random cancer websites and get misinformation when I have a question than be faced with any kind of undeniable truth. Probably not the best way to approach one's health!