Monday, March 31, 2008

Hormone Replacement Therapy Can Increase Risk of Recurrence

Hormone replacement therapy (HRT) continues to look like a bad idea.  Research in the past has linked HRT with the incidence of breast cancer.  A new study by European scientists implicates HRT in the recurrence of cancer—for hormone-receptor-positive and hormone-receptive-negative cancer.

That is, HRT might cause cancer in the first place and can cause it to return in survivors. Even for those with hormone-negative tumors.

Results of the HABITS (Hormonal Replacement after Breast Cancer: Is It Safe?) trial published in the Journal of the National Cancer Institute showed a:

• 17.6 percent risk of a recurrence or a new tumor among women taking HRT
• 7.7 percent risk among women not taking HRT

These data were taken four years after diagnosis.  

As an alternative to hormone replacement, the National Cancer Institute recommends:
• regular exercise
• a diet rich in fruits and vegetables and low in fat
• limited alcohol
• no smoking
• flaxseed, whole grain cereal, and legumes

Vitamin D supplements and calcium can limit the loss of bone mass.

Monday, March 24, 2008

Compartmentalizing My Life

My daughter and son-in-law just celebrated their second wedding anniversary. I was sure it was their third. That might be partly because I am crazy about my son-in-law and I think he has been in the family longer than he has. Part of it, though, might be that I subconsciously want to separate the joy of their wedding from the stress of my cancer.

The two overlapped, but I don’t remember it that way. I remember the one and then the other, but the two don’t blend in my memory. Perhaps because I love to think about the wedding and its celebration, but would rather forget about the stupid cancer.

I did this sort of compartmentalization at the time as well.

When Ellen and Steve got married in March 2006, I did not yet know I had cancer. They were married in Lake Tahoe with just the immediate family there. A beautiful ceremony in the snow by the lake. Two months later, we had a reception for them in Des Moines. It was also beautiful—a room full of friends and family surrounded by flowers at the Botanical Center, a beautiful couple in love, great music, and much fun.

Between the wedding and the reception, I was diagnosed with cancer.

As we were preparing for the reception, my son-in-law’s mother asked me how I was holding up. I looked at her, surprised. I had forgotten the cancer and was focusing on the delightful moment. That is still the way I see it. One beautiful series of events on its own. The cancer as a separate event. No need to blur the two.

Let Me Tell You How I Feel: Writing about Cancer is Therapeutic

I am doing the right thing. Or, I could be clever and say I am doing the write thing. Or that I chose the right rite.  Or I could just get to the point, which is: Writing about your emotions can help improve your physical quality of life after cancer, according to research in the February 2008 issue of the The Oncologist.

Some details:

• 49.1 percent of participants said writing changed the way they thought about their illness;

• 35.2 said writing changed the way they felt about their illness.

Representative quote from a participant: “"I felt a lot calmer and more able to move on after writing about it and being forced to think about it. I loved writing about my experience."

• Those who said writing made them think about their disease differently also reported a better physical quality of life.

• A great majority of the participants wrote that cancer transformed their lives positively, and those writers focused on issues of family, spirituality, work, and the future.

Representative quote from a participant: "Don't get me wrong, cancer isn't a gift, it just showed me what the gifts in my life are."

Interestingly, just writing about the facts did not have any effect.

Sunday, March 16, 2008

Diet Coke and Cancer: The Debate

I seldom pine for forbidden tastes, now that I am striving for a healthy lifestyle. Giving up Diet Coke, though, has been a chore. I have succeeded fairly well. I now have it once or twice a week instead of once or twice a day. But I miss it. I crave it in a way I crave nothing else. I now drink caffeine-free, which I delude myself into thinking is healthier. And I try to drink an equal amount of water at the same time, to encourage an early exit of the drink’s toxins.

So when I read that Coke was testing the use of the herb stevia as a sweetener instead of aspartame, I thought my soda dreams had been answered. I have researched to see the progress of that plan, but I found nothing authoritative so far. Plus, even with stevia, there is no way Coke could exist in an honestly healthy universe.

Studies have been somewhat inconsistent in finding a connection between the aspartame in Diet Coke and cancer. One study found that aspartame increased breast cancer, leukemia, and lymphoma in rats. When scientists replicated the study on humans, though, they found no correlation between the sweetener and cancer. Research on cancer can be difficult to track, as one study contradicts another, and some folks do just do outright crazy things. One odd study mapped the increase in the use of aspartame in relation to the growth in cases of cancer and determined that one caused the other. Sort of like saying the Honda Civic caused roads deaths because both saw growth at the same time.

Still, aspartame turns into formaldehyde in the body and that simply cannot be good. Formaldehyde has a checkered past, with links to a variety of cancers, although not breast cancer. Although no direct connection has been determined, the threat is there.

And you know what else is there? My continued craving for this unhealthy stuff.

Tuesday, March 11, 2008

My Stats and My Story

When my gynecologist found my tumor, she said it was small and probably nothing to worry about. This was on a Friday, and my mammogram was on a Monday. In the middle was Mother’s Day. I did not worry about the lump. I figured I was OK.

But the radiologist thought otherwise. She looked at my mammogram, then did a sonogram. She kept poking and probing, talking about some television show—I cannot remember which one—to keep my mind off what it appeared she was finding. She pulled no punches and told me she was pretty sure the pathology report would come back showing “something abnormal.”

That night, I hit the Internet and found a variety of studies that showed that most breast lumps were not cancerous, so once again I decided I was OK. I wasn’t. This was becoming a lousy pattern.

The radiologist called and told me the bad news, but said my tumor was small, telling me, “Patricia, this is not that bad.” I wonder if she has any idea how often I still think of those reassuring words.

I got little reassurance in the ensuing days, but I did get a lot of confusion, starting with the size of my tumor. Breast tumors are measured a variety of ways. First, there’s the size from the sonogram. Mine was 1.5 cm at that point. There’s also the size from the mammogram; mine was 2.1 there. Then there’s the size the pathologist determines after surgery by measuring the tumor itself. Mine was 1.3 X 1.1 cm at that point. This is a big deal, as tumors under 2 cm are considered Stage 1, or early stage.

Then I began meeting with the docs.

At my first meeting with the surgeon, he told me that I had an invasive ductal carcinoma—the cancer had broken through the wall of the milk duct and invaded other tissue. He said I would have a lumpectomy—an elegant lay term for a partial mastectomy—and radiation, unless the cancer had spread. Only if it had spread would I need chemo, he said. At this point I knew nothing about hormone negative cancer, so I asked few questions, and trustingly made plans for the surgery. I somehow knew it had not spread and so I figured I would have the inconvenience of radiation, but that was it.

Wrong again.

The surgeon explained that he would take out only one lymph node—the sentinel node, or the node to which the cancer would move. This is determined by injecting a radioactive tracer consisting of blue dye into my tumor and seeing where it moves. The node to which it heads first is the sentinel node.

He ended up taking out two sentinel nodes, both of which were negative, thank God. The cancer had not spread. He told me this immediately after surgery, while I was still in recovery. Then he quietly dropped a bombshell. He told me he got all the cancer—with a healthy, clear .3cm margin—but that he wanted me to see an oncologist about chemo. “But it has not spread; I don’t need chemo,” I argued. He was adamant. His nurse would set up the appointment.

It was not until my husband and I naively went into the Oncologist Number One’s office a week after surgery that I learned that there was such a thing as hormone-negative cancer and that it is more aggressive than hormone positive. I was estrogen-negative, weakly positive for progesterone and negative for Her2. The oncologist said they treat that weakly positive as negative and that I needed chemo because of the aggressive nature of my tumor.

He said the tumor was poorly differentiated, which meant it could grow rapidly. And he said it was 2.1 centimeters, making it a Stage II rather than a Stage I. He used the size from the mammogram. Had I gone with his interpretation, I would have had four rounds of adriamycin and cytoxen followed by four rounds of taxol, or 16 weeks of chemotherapy.

I had 100 percent chance of losing my hair after two weeks of treatment, he said, but nausea and vomiting are “no longer an issue” because of drugs. He said I would not feel 100 percent normal, but could count on being about 85 percent of my charming self. The taxol, he said, might cause some degeneration of nerves, but it goes away with time. He was so calm and cool and officious, I wish I had asked if he had ever had chemo.

My husband and I left the office in shock. Chemo put an entirely different color on the whole thing. When you lose your hair, you are a cancer patient, with a capital “C.” Without chemo, it is lower-case cancer.

After reeling for a few hours, I decided to get a second opinion, but I was still depending on the advice of doctors; I had not yet done research into hormone-negative cancer. Magically, I ultimately made the right decisions, but I wish I had been better informed from the beginning.

We met with Oncologist Number Two three days later. He looked through the chart and said the tumor was only 1.1 cm—what the pathologist determined after surgery. It wasn’t very big and it had not spread, so it was early stage breast cancer. But it was hormone-negative and therefore very aggressive. “This is a young woman’s cancer,” he said. “We take it very seriously. You don’t get a second chance.” However, because my nodes were negative, he said I would need the adriamycin and cytoxen in a dose-dense regimen every two week, but I would not need the taxol. I would then have radiation.

And he looked at the Nottingham Histologic Score, which was Grade II, meaning it was in the mid-range in terms of aggressiveness. The higher the grade, the more aggressive the tumor: Grade I is slow growing; Grade III is fast growing. I felt a little calmer, knowing I was middle-of-the-road.

I went with Oncologist Two and his regimen, which, I learned through research, is the standard for early-stage node-negative hormone-receptor-negative cancer. So many negatives, and I was trying so hard to be positive.

I had four rounds of chemotherapy—adriamycin and cytoxan—and I did, indeed lose my hair. Three weeks after chemo started, just as Oncologist Two predicted.

But the business about no nausea from Oncologist Number One? Well, we took him seriously, and went out for lunch after the first chemo treatment. I still cannot look at spaghetti with meat sauce without a sense of revulsion. Ick. I learned to eat small, mild meals before chemo and the nausea was better, but I still felt ill the day or two after treatment. I also started visiting an acupuncturist on the day of treatment and that helped the nausea and my well being immensely. I still see her. I think she is magic.

I continued walking for exercise throughout treatment. That, I think, helped the nausea. I worked as much as I could, often at home, and found the frustrations of academic life to be a nice reprieve from cancer treatment. Cancer does put everything into perspective. I had a thoroughly supportive workplace, which was a blessing and, I am sure, helped my recovery.

After chemo, I had 33 days of radiation. Every weekday for six and a half weeks. I loved my radiation oncologist—a truly positive woman—and the technicians, who all had a good attitude and a sense of humor.

I began this adventure May 15 with the mammogram, sonogram and biopsy. I had surgery exactly two weeks later, on May 29. Chemo went from June 16 through July 27. Radiation started August 14 and ended September 29.

On October 7, two weeks after my last radiation treatment, I was hiking in the Colorado Rockies. My longest hike that year was a three-hour trek up to 9,000 feet. As I walked I enjoyed the warm autumn sun, the purple mountains, the orange and gold fall leaves, and I thought of how I loved this part of my world. We walked briskly and I had no trouble keeping up with my husband, brother and nephew, all usually stronger hikers than me. It wasn’t until I reached the top of a canyon and asked my husband to take a picture of me with my still-bald head that I remembered I had just finished cancer treatment. It all seemed like a bad dream. Or perhaps, a good one. I had, in fact, awakened, with energy and sprit and, most important, health.

Wednesday, March 5, 2008

Oncotype DX test minimal help for hormone-receptor-negative

The Oncotype DX test can predict the likelihood of recurrence in early stage invasive breast cancer, but it has one flaw: It works with hormone-positive cancers, not hormone-negative. Once again we’re the wallflowers at the breast cancer prom, with the docs dancing with the girls with the popular cancer.

Still, the test might be worth asking for (check to see if your insurance covers it first) because it will include your estrogen (ER) and progesterone (PR) receptor status. This is factored into the likely rate of recurrence and is used to determine the potential benefit of chemotherapy and tamoxifen.

A sample test nicely demonstrates how pathologists define ER and PR scores. The higher you are in the positive range, the more you will benefit from tamoxifen. I did not have a graph like this to clarify my readings. I just got a generic “ER-negative; PR weakly positive” statement. When I finally came to my senses and realized I needed more data, I called the lab to determine how weakly positive I was. They said they no longer had the sample and had just the information I already had on my pathology report. They gave me their definition of “negative” as being less than 50 percent of the sample. It would have been great to have had the additional data this test provides, even if it could not determine the rate of recurrence of my cancer.

My husband, though, reminds me often: My cancer is not coming back. Period.   

Sunday, March 2, 2008

Newly Diagnosed with Hormone Negative? Where to Start?

Try to remain positive.  Look at this: Overall 86.8 percent of patients with hormone-negative tumors were disease-free ten years after diagnosis, according to research presented at the Fifth European Breast Cancer Conference . This comes even with some advanced cancers. Of those survivors with hormone-negative tumors who were disease-free after five years, 35 percent had had lymph node involvement, and 11 percent had grade 3 tumors.

So focus on survival and taking care of yourself right now. Some tips on doing that:

• Get your pathology report. has some great information on how to understand it. Dr. Susan Love's Breast Book also offers a comprehensive explanation. The report is where you will learn your hormone receptor status, plus the size of your tumor and how aggressive it is. You can get your report from any of your doctors. Get is as soon as you are diagnosed, read it carefully, and ask your doctors to explain what you don’t understand.

• Plan on chemo. It works. Newer forms (high-doses of cytoxan and adriamycin every two weeks plus taxol) are especially effective, according to research published in the Journal of the American Medical Association. This regimen reduced the risk of death by 55 percent as compared with older forms (low-doses of cytoxan and adriamycin plus fluorouracil every three weeks) in women with hormone-negative cancer that had spread to the lymph nodes. Typically, women whose cancer has not spread to the lymph nodes do not need taxol.

• Get your body in shape. Exercise helps reduce the risk of recurrence, improves your mood throughout treatment, and keeps you from gaining weight during chemotherapy. Weight gain during chemo? Yes, that is sort of adding insult to injury but it is true. In a study in the Journal of Clinical Oncology of 514 breast cancer survivors three years after diagnosis, 68 percent gained an average of 8.6 pounds, with a maximum increase of 60 pounds. Women treated with chemotherapy gained the most, adding an average of 4 percent to their pre-diagnosis weight.

• Get your mind in shape. Being positive makes this all a lot easier. Look to family and friends for support, be open to what they give, and be patient with their occasional stumbles. This is new and stressful for them too. If you’re the least bit religious, remember the importance of prayer. I’ve written on how prayer helped me . Meditation and yoga can also help you maintain your sanity. Its basic emphasis: balance.

• Go outside. ”Natural intervention,” or spending two hours a week in nature watching birds, tending to plants or gardens, sitting by a window with a view of trees or a garden can cut the fatigue that is often associated with cancer treatment.

• Watch your diet. Women with hormone negative benefited the most from a low-fat diet, with a 42 percent reduction in recurrence, according research in the Journal of the National Cancer Institute.

• Before surgery, check into brachytherapy instead of standard radiation. It cuts radiation time from five or six weeks to one, and it is far less invasive. Doctors embed radiation seeds into the breast, so this needs to be coordinated with your surgeon. I waited too late to ask for it and my wound had already healed, so I had to go the traditional route.

• Consider acupuncture. It can help ease the nausea of chemo and it can you relax and find peace. I visited my acupuncturist before each treatment and she made me feel calmer, no matter what.

• Live your life. Your chances of that life being a normal length are far better than you might think right now. Continue doing what you did before, only try to make it a little healthier.