Sunday, August 12, 2007

Monday, August 13, 2007 It only gets better from here

When I last wrote, I was waiting for my appointment with my surgeon, Dr. Smith. My friend Debi took me to see her. (Thank you, Debi). Boy, was I nervous. She sat down and told me the news. My pathology report showed no cancer on the right breast, and 0 of 2 sentinel lymph nodes excised were positive for metastasis (cancer). So far, so good. On the left, 3 of 11 lymph nodes excised were positive for metastasis. One tumor was found, and it was positive for invasive ductal adenocarcinoma. Ready for the really bad part? As if that wasn't bad enough. The tumor was stuck to the chest wall, and the margin was "focally positive". In other words, the margins were not clean. The tumor was within 1 mm of the the deep margin (the muscle) on the left side in two separate specimens. Dr. Smith explained that she and the pathologist in the operating room felt that they had gotten clean margins during surgery, but this is what the lab found. In her opinion, she wanted to go back in and scrape a little more of the muscle to get more of the cancer cells, in hopes of getting a clean margin. She told me that if her sister were in my shoes, she would advise her to to the same.

She asked me to consult with my plastic surgeon to determine the best time to do this surgery, to work it in with my reconstruction, but that the operation had to be done before radiation started. In the next few weeks, she said. I asked a few questions, but I was in shock.

Denial. Anger. Bargaining. Depression. Accepta
nce. I felt myself going through all these stages that night. Debi stayed with me that evening while I had a small reception for my son, who was home for a few days. He left the next morning for Texas before I had a chance to tell him what was going on. Later that week he called me, angry and frustrated. "Mom, why didn't you tell me? I could have stayed home with you. You told everyone else, but you didn't tell me. I had to hear it from Meggie!" I explained that I was not sure there was anything he could do, and he might as well have some fun on his little break. I needed more information!

I definitely needed more information. I left Dr. Smith's office without a copy of the pathology report. I didn't ask her about my classification or staging. I forgot to ask a lot of questions.

By Friday I had an appointment with Dr. Tsao-Wu, my plastic surgeon, who was planning on draining a seroma that had developed on my right side. Colleen was the lucky gal who went with me. As Dr. Tsao-Wu worked on the seroma, Colleen and I bombarded her with questions. She said she wasn't sure how this additional surgery could fit in with the reconstruction; she would have to think about the best way to do that. Dr. Smith hadn't contacted her, so she would give her a call. I saw her again on Monday, again with Colleen, and she still hadn't heard from Dr. Smith
but had left her several messages.

Later that day, Barb J. took me to see my oncologist, Dr. Marshall, who had the pathology report in hand when she came into the exam room wearing the cutest little gold dingleball earrings. She explained in detail what the path report said, and why maybe it wasn't necessary or advised to have more surgery. As she spoke, the gold dingleball earrings swung back and forth, mesmerizing us. She said I needed to discuss this with the radiation oncologist and with Dr. T
sao-Wu again. I would definitely need radiation on the left side, and that's the purpose of the radiation -- to zap any local cancer cells that may have been left behind. (good news -- I probably won't need any radiation on the right side).

After my appointment, I called
Dr. Tsao-Wu's office to ask her a question, and she got right on the line. "I spoke with Dr. Smith," she said. I strained to listen. "I told her I wasn't planning on opening you up again until after radiation." She explained that Dr. Smith said it was pretty rare to have to go back in to remove more muscle, and the surgical community didn't have enough case studies to determine the best time to do it, so it would probably be okay if she waited until after radiation. ??!?! What?
Now, this doesn't make any sense to me. If the radiation gets it all, why do we have to go back in again? And what was the reason for the initial urgency?

[NOTE: It has been brought to my attention that this post is completely depressing and unfunny. Therefore I will relate a funny story I heard, which provided me with the one belly laugh per day that I so desperately need for healing. My friend Joe called from El Paso, and I told him that my hospital bill arrived (wow, almost faster than the pathology report). The total came to $30,000. Joe reminded me that on the Sopranos, they refer to that as 30 boxes of ziti. Ha! OK, resume reading post now]

When I got home, I started reading my favorite breast cancer book, Dr. Susan Love's Breast Book, to find some answer
s. Dr. Marshall had given me a copy of the pathology report, so I began to "stage" my own cancer. Here it is, folks. Stage IIIB. It's a locally advanced cancer (what Dr. Love calls a "special case"). It's also pretty rare to have tumors in both breasts, which is what I had before chemo did its job. However, the staging depends on the worst tumor you have, plus affected lymph nodes, which gives me Stage IIIB.

For all you analytic types who want to know where it lies on the Nottingham scale, it is Tumor Grade-1, Nuclear grade-2, Mitosis score-1, tubule
formation-1. The Tumor Grade helps determine my prognosis. More on that later.

All along the protocol for my cancer treatment was in the Breast Book. I had never found that section because I didn't know exactly what we were dealing with. Here it is: neoadjuvant chemotherapy using Adriamycin & Cytoxin, followed by Taxol (A/C+T), four treatments each. Frequent examinations and diagnostic tests to be sure the tumors are responding to the chemotherapy. Bilateral modified radical mastectomy, followed by radiation on the side where positive lymph nodes are found. I did all of this, and I'm now awaiting radiation.

Some cancer patients have asked me why I am undergoing these particular kinds of treatments. They seem to feel in some way that I got better treatment, or they weren't offered the latest and greatest. Now I know the answer. I was placed on this particular protocol because I am a "special case", a locally advanced cancer. Boy, do I feel special.

I was never told that I was a special case, that my odds of survival are not good. Grade 1 tumors often show an 80 percent survival rate after ten years (80 percent of the women with Grade 1 tumors survive). Here's what
Dr. Love's book says on the subject: a study of a group of women with Stage IIIB cancers, treated aggressively, show a median overall survival rate of 12.2 years and event-free survival of 9 years. That means half the women in this study have had no recurrences in 9 years and half are still alive at 12.2 years. Fifteen-year overall survival rate was 23 percent (at 15 years 23 percent were still alive). Let's see, that would make me 63 years old. Rachel would be about 28. I probably wouldn't be a grandmother yet.

Makes you think, doesn't it?

What would you do if you only had 15 years to live? Would you be doing the same things you are doing today?
What will you do today that will matter tomorrow?

As for me, I think I will take a few trips to see parts of the world I haven't seen and maybe revisit some that I really love, like Hawaii, Alaska, and Italy. I want to visit some friends and write about my experiences. It will probably cost me a couple of boxes of ziti, but it will be worth it. I'll bring my camera and sketchbook, and you can enjoy it with me. Ciao, baby!

1 comment:

BusyBee said...

Princess Grace - I think of you often and pray for you and your loved ones. I'd like to offer some advice on your son's comment about you not telling him the latest info. Don't be selective about what you share. Tell your kids everything you know otherwise they will start having doubts and it could develop into a trust issue between you and them. Let your kids decide if they want to be there for you or go play with friends. Love is a powerful gift. Accept it with open arms.