Sunday, January 23, 2011

Tough decision

On January 12, I had an appointment with Dr. T. (the general oncologist) to discuss the results of the P.E.T. scan.

The test revealed no evidence of cancer in my body and except for some arteriosclerosis in my abdominal aorta, every thing looked fine. My blood work was okay as well, and he pronounced me “a very healthy 68."

I found this highly gratifying as I have spent the past dozen or more years working hard to overcome the sins of my youth by eating right and exercising regularly. So I asked, “If my tumor was so small (just three mm), and I had clear margins (no signs of cancer surrounding the site where the tumor was removed), a negative sentinel node biopsy and a good P.E.T. scan, why do I have to have radiation?”

He was taken aback: “Well! It’s part of the standard treatment . Statistics show radiation can help you live another 20 or more years.”

But I pressed the point until he finally dragged me next door and stood there while I made an appointment to see the radiation oncologist, Dr. H., the following week to discuss my questioning of standard treatment.

Fair enough. I needed a second opinion. But would I get an unbiased answer from someone whose job is to administer radiation therapy to cancer patients? I went home and started doing research and composing my questions to ask Dr. H.

Here are some points/questions I considered for my visit:

  • Online I found three fairly recent studies (No pooh-poohing. I was a university reference librarian after all) indicating a low rate of local recurrence of breast cancer in older women (70+) who had small, stage one tumors even when they did not have radiation treatments. All participants, with or without radiation, still had to take the hormonal adjustment therapy, Tamoxifen. (I’ve kind of mashed the study results together but essentially here are some key results.) The statistics showed that after five years with radiation and Tamoxifen there was a tiny chance (less than one percent) of local recurrence of the breast cancers. Women who only took Tamoxifen and no radiation had a local recurrence rate between 3 and 4 percent.
  • Women who underwent radiation but still had local recurrences of their cancers had to then have mastectomies. Women who didn’t have radiation and took Tamoxifen only and had a local recurrence had the option of having another partial mastectomy (followed by radiation – no escape this time).
  • And this interesting statistic: The five year survival rate of the radiation + hormonal therapy group was identical to the survival rate of the radiation only group. (Increased anxiety is a consideration for someone with a genetic propensity for worrywartism (moi). But Bob notes that I would worry in either case.)
  • Question: What kind of vitamins should I take during radiation to help counter the fatigue and other side effects of the treatments? Dr. H.: “No vitamins. There’s research to suggest that vitamins keep the cancer cells healthy.” (My note: Radiation therapy is radiation poisoning after all-- controlled, yes, but death to all cells without regard to healthy or cancerous is its mission.)
  • Weight: I’ve already lost 10 pounds since this cancer episode began. (I weigh less now than I did in 8th grade, but not a diet strategy I can recommend!) Radiation tends to make everything taste metallic; loss of appetite is pretty standard. While I love being slender, I just don’t think it’s all that healthy to not have any reserve adipose tissue!
  • Expense (minor consideration although the office manager for Dr. H. said she would bill Medicare a jaw-dropping $65,000 for the treatments. Medicare, in turn, would offer the hospital a payment between 15K and 20K that the hospital would accept. This means Medicare picks up 80 percent of the hospital payment figure; we pick up the tab for the remaining 20 percent.)
  • Inconvenience: 6-7 weeks driving daily to the hospital (60 mile round trip) for a 1-2 minute blast, rising gas prices, time missed from work for the treatments and/or the resulting fatigue.
  • Pain/discomfort: Here’s a quote from one of the studies: ( “…women who had radiation in addition to Tamoxifen reported worse breast pain, swelling and cosmetic outcomes in the first few years of follow-up compared with women who took only Tamoxifen. After about 4 years though, these effects were similar in both groups.”
  • Dr. H. said a portion of the lung cannot be screened from the radiation. (If there’s a cancer I fear, it is lung cancer. It took out both my daddy and my brother and I smoked for 35 years.) New studies are showing that long term side effects of full breast radiation indicate not only small chances of lung cancers, but also melanoma, heart and circulatory problems since blood vessels in that part of my chest are also damaged.
  • Because I am older, it is generally assumed that my cancer is less aggressive than the cancers in younger women. On the other hand, maybe the healthy status I have worked so hard all these years to achieve has made the cancer cells healthy too.

My final big question for the doctor: "What I want to know is if not undergoing radiation for my cancer is a reasonable option for me?

He said that it was. So I have decided I will proceed with my life without radiation.

Of course, there were other considerations I haven't discussed, ones more personal and emotional. And while my friend Betsy has cautioned me that someone suffering from multiple losses often doesn't think as clearly as under normal circumstances, I think this decision is a reasonable one. And, too, I want you to see how tough a simple 'go' or 'no' can be in case you might someday face a similar situation.

On a fun note, for those who cook mostly for themselves, my friend Jean (she who helped me settle my Mom’s apartment) is writing a book with wonderful recipes geared for one (or, sometimes, two). She has also begun a charming blog that includes some of her tasty recipes. She had an apple omelet sort of thing the other day that I made for lunch. It was so simple, yet so nummy I have definitely added it to my frequent cooker file. There's an RSS feed as well that if you click, you get automatic messages in your e-mail when she posts a new recipe. Here’s the link:

The pictured flower is an amaryllis. Everett, a friend and colleague from work, and his wife Debbie gave me the bulb in memory of Mom. It’s a traditional gift their church offers to those grieving a death. While the plant has lots of Christian symbolism attached to it, I have been fascinated just watching it grow. It started out as a little white stubby thing that turned into this gorgeous two and a half-foot tall flower with four huge deep reddish-orange blossoms (the petals total 6 inches across!) I call it Amazing Grace.

Love to all,

1 comment:

  1. Rose;
    I believe you are doing the right thing, not doing the radiation.
    You are very brave! Prayers cont.
    Love ya,