Friday, May 30, 2008

Understanding Your Pathology Report: A Short Primer

Your pathology report will include information your doctor will use to determine your treatment and to gauge your prognosis. If you had a biopsy before surgery, you will probably have two different reports—one from the biopsy and one from surgery. Make sure you get a copy of all your reports as they will help you understand your doctor’s recommendations. Lalit vora, MD, director of breast MRI at the City of Hope, even suggests women talk to the radiologist who did the original screening. “The radiologist should be part of your team,” he says. This can be easier said than done, however, as many radiologists prefer to work through the doctor, to reduce the risk of misunderstanding.

Your pathology test has seven sections: specimen, clinical history, clinical diagnosis, gross description, microscopic description, special tests or markers, and summary or final diagnosis.

SPECIMEN: Where the test was taken, such as left or right breast or lymph nodes. A biopsy report will not have data on lymph nodes.

CLINICAL HISTORY: A cryptic statement about your history related to this and any previous cancers. On a biopsy report, this will explain why the test was done, with a notation such a “density” or “palpable lump.” On a surgical report, it will refer to why the surgery was done, often with a simple reference to “left breast cancer.” It may also explain your surgery—“mastectomy” or “partial mastectomy,” for example.

CLINICAL DIAGNOSIS: Your specific type of cancer, such as infiltrating ductal carcinoma (a cancer that has broken through the wall of the milk duct) or ductal carcinoma in situ (the cancer remains contained in the duct).

GROSS DESCRIPTION: The size of the tumor and, for a surgical report, the size and status of the surgical margins and lymph node involvement. This includes:

•Tumor size: Tumors are measured by centimeters (cm). One cm is .394 of an inch. The smaller the better, with under 2 cm usually considered “early stage beast cancer.” 

• Lymph node involvement: The number of lymph nodes tested, and those that tested positive for cancer. A positive lymph node is one to which cancer has spread. A negative node means cancer has not spread.

• Surgical margins: This measures the amount of tissue the surgeon removed around the tumor. Ideally, this should be between 1cm and 10 cm. Clear margins mean that the cancer has not spread to the surrounding tissue.

Microscopic Description: How the cells looked under the microscope. This is most likely where you receptor status is indicated.

• Receptor status: Pathologists measure this using a system that stains the tumor after a biopsy. Different labs present results differently. Some will quantify the result; others will simply note that the cancer is positive or negative. Quantification is ideal, because the more hormones present in the cell, the less aggressive the cancer and the more likely it is to react to hormone treatment.

Some labs use a 3-point system, with a score a “0” meaning none of the cells in the biopsy sample contained receptors, and a “3” meaning most cells contained receptors. A “2” is usually considered weakly positive. Other labs may simply indicate a percentage, with 0 percent meaning no hormones were present and 100 percent meaning all cells in the sample had receptors. In this case, anything under 50 percent is usually weakly positive.

SPECIAL TESTS OF MARKERS: Two common means of assessing how rapidly the tumor is likely to grow are the Bloom-Richardson Scale and the Nottingham Histologic Score. Both readings will likely be high with HR- cancer.

• A Bloom-Richardson high grade means a fast-growing tumor; Low grade means slow-growing. The pathologist might also use the term “poorly-differentiated,” which is another way of saying aggressive.

• The Nottingham Histologic Score rates the tumor numerically based on its “mitotic” count, or how rapidly it appears to be dividing and growing. A Grade I tumor has between 1-5 points and is slow-growing. A Grade II has between 6 and 7 points and is growing at a medium pace. A Grade III is over 8 points and is rapidly growing.

SUMMARY OR FINAL DIAGNOSIS: An overview of the important aspects of your tumor.

WHAT THIS ALL MEANS: The best prognosis comes with smaller tumors that have not spread, with a low Bloom-Richardson rating or Nottingham Histologic Score. Even small HR- tumors, though, are considered aggressive.


Read more about testing and treatment for TNBC in my book, Surviving Triple-Negative Breast Cancer.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

Tuesday, May 27, 2008

Footsteps on The Appalachian Trail


I should have added “Hike the Appalachian Trail” to my bucket list. I don’t expect to do much of the trail, certainly not the whole thing, but I would like to at least spend a day or two on it.

I got a start this month in Falls Village Connecticut. OK, we only walked it for an hour—we had a plane to catch—but I at least set foot on the same ground that others have passed since the trail was completed in 1937. The first part of our trek was not all that scenic—we walked along Connecticut Highway 7, over the Housatonic River, down Warren Turnpike, past the Housatonic Valley Regional High School and then, finally, into the woods.

Maybe next spring we’ll go to Georgia, where the trail begins. Then, some other time, we may go to Maine, where it ends. Then we can say we went on the trail from beginning to end.

Saturday, May 24, 2008

My Life In Cemeteries: Memorial Day Musings


As a kid, I spent part of every Sunday at Roselawn Cemetery in Pueblo, Colorado. We would “visit” my Prijatel and Okicich grandparents, put fresh flowers on their graves, and then wander to see my parents’ various relatives and friends. It was an oddly rewarding experience. I enjoyed hearing my Mom and Dad reminisce about their pasts and I loved the serenity of the place. Water sprinklers often chattered in the background, keeping the lawn lush and the lilac trees and snowball bushes healthy and fragrant.

My Mom taught me to walk around the graves, making sure I did not walk on top of anybody, being especially careful to avoid humps in the lawn. Occasionally, we would go to the pauper’s cemetery, where there was no lawn, the gravestones were ancient and poorly maintained, and tumbleweeds were the flowers of choice. My mother had an aunt buried there in the early 1900s, and I felt like I was walking into the Wild West when we wandered through those graves, walking gingerly to make sure we didn’t step on any humps that could be rattlesnakes.

We listened to the Slovene Hour as we drove to Roselawn, and sometimes Dad left the radio running so we could hear a favorite waltz or polka. Pueblo, Colorado, my hometown, had a healthy Slovenian population, brought there to work at the steel mill, the Colorado Fuel and Iron Corporation. My name, Prijatel, means friend in Slovene. The names on the gravestones were Slovene, Croatian, Serbian. My Dad used a racial epithet for the Serbs—a word I do not remember and am fine forgetting—inheriting a hostility toward an entire country from his parents who were Slovene immigrants. The Balkans have a long history of conflict—far longer than the recent wars between Serbia, Croatia and Bosnia in the early 1990s. That conflict lived on in the cemetery, at least in my Dad’s mind.

A few years before Dad died, I recorded a walk around the cemetery with him. I wanted a record of his memories about the people. He talked about his parents, both of whom died before I was born, and about the men he worked with at the steel mill. Dad made nails, which was a great metaphor for him—he was a strong as nails and about as sharp, in both a good and bad way. He was smart and he was acidic. As we walked over the manicured lawns in early spring, with lilacs blooming and graves festooned with irises, Dad talked in his mix of censure and compliment. “Oh, look, here’s old Frank. The old [another racial epithet, this time for Italians], I always liked him. He worked hard but he didn’t take any guff from anybody.” Farther along: “Yeah, here’s Jorge. The [another racial epithet, this time for Hispanics]. Smart, really smart. He made the rail spikes and, boy, he could fix that machine in no time flat.”

Fortunately, I did not inherit Dad’s racial perspective , but I did get the love of cemeteries. When my husband and I visited Vienna, our first stop was Zentralfriedhof, the Central Cemetery, where Beethoven, Brahms, Schubert, and Johann Strauss the elder and the younger are buried. In tiny Wrangall, Alaska, we saw one of our most intriguing cemeteries, in which graves were smothered with the special symbols of the person who had died—one was done in a nautical theme, covered with a boat wheel, nets, and a photo of the deceased in his craft.

We visited the beauty in the picture above, the Old Dutch Church and cemetery in Claverack, New York, earlier this month and it made me wonder why I love to visit cemeteries. Part of it is historical interest, to continue a link with the past, to see when people died, how long they lived, and to wonder about their lives. Partly it is because of the art involved. Gravestones can be magnificent granite monuments; outlandishly ornate mélanges of angels, crosses, and hands raised in prayer; sweetly simple rocks with loving text, or roughly rustic homemade jobs with jagged, barely visible scrapes chiseled in wood.

Everywhere, though, they are a reminder that, even though these people are gone, they left behind people who loved them and who continue to remember them. I visit the Pueblo cemetery once a year or so—my parents are now there—and I like to chat with them a bit and to spend some time with the grandparents I never knew but whom I will not forget.

Americans make their cemetery pilgramages on Memorial Day, but in Slovenia, the big celebration is on November 1—All Saints Day. For at least a block before the cemetery entrance, kiosks are set up to sell everything from the obvious to the absurd. Lots of flowers, of course, are a natural. But cotton candy? And ice cream? Our visit there was like going to a carnival. The graves were covered in flowers—fresh bouquets, plants, a mix of both—and the cemetery was packed with people, as though it were some sort of fair.

It is ironic, then, that when we tried to find my great-grandparents’ graves in Slovenia, we were told that the cemetery had moved and they were not moved with it. In Slovenia, many graves are leased, not purchased outright, so when people die or leave the country and stop paying rent, the graves they left behind revert to the church or the city.

That’s what happened to my Slovene grandparents—they moved to America and the graves of their parents simply disappeared in an abandoned churchyard. Still, my parents continued the Slovene tradition of respecting and remembering the dead and passed it on to their kids and grandkids. And so we honor other grandparents, in other graves, in other cemeteries around the world.

Friday, May 23, 2008

My Second Anniversary

I have passed the two-year mark since diagnosis.   The chances of cancer recurring decrease significantly over time, which makes every milestone important.   Hormone-negative breast cancer is most likely to recur within the first three years, so being cancer-free and healthy so far is great news, and I plan to continue in this vein.   Time to celebrate! The big party, though, will be in five years. Perhaps on Machu Picchu.

Sunday, May 18, 2008

Exercise benefits younger women

Physically active premenopausal women significantly reduce their risk of breast cancer, according to research in the May 13 edition of the Journal of the National Cancer Institute. Many studies have shown an exercise benefit to postmenopausal women, but this new research shows that younger women also reduce their cancer risk. The research is part of the long-range Nurses Health Study and included 64,777 premenopausal women. Some details:

• The greatest risk reduction came from exercise between 12 and 22, with those 23 to 34 showing a slightly reduced benefit. Women over 35, in this study, gained no risk reduction, which contradicts other studies that show a benefit to lifelong exercise.

• Running 3.25 hours a week or walking 13 hours a week brings a 23 percent risk reduction.

NOTE: Hormone-negative breast cancer is most common among premenopausal women.

Exercise—the best medicine for hormone-negative

Physical activity, including moderate walks and cycling, reduces the risk of breast cancer, with the greatest benefit among women who are hormone-negative, according to a literature review of 62 studies on the effect of exercise on breast cancer risk. Other women whose gains are especially significant: non-whites, those with a family history of breast cancer, and those who have given birth to two or more children benefit the most from exercise.

The review, published in the May 13 edition of the British Journal of Sports Medicine, found that:

• In 76 percent of the studies, physically active women had a lower breast cancer risk; risk reduction was significant in 30 of the 62 studies.

• Among the studies that showed an effect, breast cancer risk was reduced by an average of 25 percent.

• Moderate activity such as walking or leisure cycling brought better odd—a 26 percent reduction—than high intensity exercise—a 22 percent reduction.

• Lifetime activity showed the greatest benefit—greater than that from activity around the time of diagnosis.

• Active postmenopausal women benefit the most. Activity over age 50 showed a greater risk reduction that activity in adolescence and early childhood.

• Thin is best, but only when associated with exercise. Women with a BMI of less than 22 had 19 percent greater risk reduction than women with a BMI above 25. (See the link on the left to compute your BMI.)

• A high BMI cuts the effect. Women with a BMI over 30, even if they are active, had no risk reduction from exercise.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!


Read more about TNBC in my book, Surviving Triple-Negative Breast Cancer.

Sunday, May 11, 2008

Carbohydrates increase hormone-negative breast cancer risk

A diet heavy in simple carbohydrates—sugar, white bread, cakes and cookies—can put a woman at risk of hormone-receptor-negative breast cancer, according to research in the American Journal of Nutrition’s May 2008 issue. French researchers studied the diets of 62,739 postmenopausal women from 1993 to 2002; 1812 of these women eventually were diagnosed with breast cancer. The researchers note that, because simple carbs are rapidly absorbed by the body, they elevate insulin levels, which can be the link to hormone-receptor-negative breast cancer. According the Centers for Disease Control, complex carbohydrates—whole grains, seeds, vegetables and most fruits—are more slowly digested and less likely to increase insulin levels.

Friday, May 9, 2008

Need a Last-Minute Mother's Day Gift? Support Cancer Information

Breastcancer.org's gift shop offers organic bouquets, Lenox vases and other goodies, with 10 percent going to the group's activities.  Or just give a donation in Mom's name.  Breastcancer.com offers comprehensive, accurate, and up-to-date  information on breast cancer.  It is an excellent site.

Finding the right genes

I am fascinated by the Human Genome Project, a wide-ranging, long-term study of DNA—and its implications on finding, treating, and avoiding diseases. Doctors say our cancer is as unique as our DNA, so I would really love to try to delve into the “why” and the “how” of my illness. I have a grandmother who died of stomach cancer—although I have long wondered if that was a euphemism for some "woman's problem" like uterine cancer. My mother died of liver cancer that started in her pancreas. My dad had a form of leukemia—often called pre-leukemia, although he died of pneumonia.

In the future, doctors speculate they will be able to customize cancer treatments based on genetic information. And drugs can be developed for specific genes. So, theoretically, our genes could be used to treat illnesses, rather than just cause them.

Still, even though I have a genetic predisposition toward cancer, other lifestyle factors such as diet and exercise are essential. Did the weight I gained in my 50s make me more susceptible?

As I said, this is a compelling medical mystery. It might be my next big project.

Wednesday, April 30, 2008

Report on Healthy Ways to Prevent Cancer

Food, Nutrition, Physical Activity, and the Prevention of Cancer: a Global Perspective, a comprehensive report on a five-year study of the relationship between diet and exercise and cancer risk, is must reading.

A product of the American Institute for Cancer Research and the World Cancer Research Foundation in the United Kingdom, it's an excellent overview of research, with recommendations for preventing cancer through lifestyle improvements.

Hormone-Negative Rates Drop; Benefits of Vitamin D

The American Association of Cancer Research met earlier this month in San Diego. Several studies dealt with hormone-negative breast cancer. I highlight a couple of them below.

Estrogen-negative cases drop slightly for most women
Cases of estrogen-receptor-negative breast cancer dropped slightly for white and Hispanic women between 2002 and 2004, but rose for African-Americans, according to researchers from the University of Chicago Medical Center.

Estrogen-negative disease disproportionately affects black women, with 40 percent of their tumors likely to be estrogen-negative compared to 20 percent for white or Hispanic women. And while blacks are less likely to get cancer in the first place, they are more likely to be diagnosed with advanced and more lethal forms, such as triple negative (ER-, PR- and HR2-).

Estrogen-receptor-positive breast cancers also dipped, notably among women 50 to 69, with a 13% drop for whites, 11% for Hispanics, 4% for Asian or Pacific Islanders, but no change for African-Americans. This was tied to a reduction in the use of hormone replacement therapy, which affects estrogen-positive cases because they are fueled by hormones.

The reduction in hormone-negative does not have the logical link to HRT and researchers did not explain the drop in those cases. They speculate that black women may have less access to regular mammograms, which accounts for their tumors being at an advanced stage at diagnosis.

Environmental and social factors may also influence cancer, with women in Nigeria having estrogen-receptor positive tumors 70 percent of the time—a 43 percent increase over African-Americans.


Vitamin D Slows Breast Cancer in Rats
A specific form of active vitamin D known as Gemini 0097 substantially reduced the development of both estrogen-negative and estrogen-positive breast cancer in rats. Researchers at Rutgers University injected rats with breast cancers then treated them with Gemini 0097. The vitamin D slowed the growth of ER-positive by 60 percent and ER-negative by 50 percent.

As with all studies in animals, more research needs to be done to determine the effects of Gemini 0097 on human cancers. One benefit so far is that Gemini 0097 is less toxic than other forms of synthetic vitamin D and does not lead to an overload of calcium, the most common side-effect.

Monday, April 21, 2008

Cancer Survivors More Obese Than Most

Breast cancer survivors are among the least physically active cancer survivors, which turns out to be a pretty sedentary group. In a study published in the June 1 issue of Cancer, the journal of the American Cancer Society, Canadian researchers discovered that cancer survivors, for the most part, have a surprisingly unhealthy lifestyle. Among the least active are colorectal, breast, and female melanoma survivors. The most active: male skin survivors

Twenty-one percent of the 114,000 Canadians who were interviewed for the study were physically active; 18 percent were obese. By comparison, 25 percent of Canadians are physically active and 15 percent are obese.

Breast cancer survivors were only about half as likely to be physically active as women who had not had cancer. This despite the fact that both diet and exercise are linked to a reduced risk of cancer and its recurrence.

Why do patients not adopt the healthy habits that can ? There are several possibilities.

• They don’t know about the research.
• Their treatment left them exhausted, depressed, or both, neither of which is conducive to starting a diet or exercise regimen.

If they don’t know that obesity and a sedentary lifestyle are dangerous, why not? Are doctors not focusing on the whole patient, looking only at the cancer and not the rest of the body? That was the case with my docs—nary a one told me to eat well and exercise. Perhaps they knew I was already a health nut? Perhaps they didn’t know the research themselves? Perhaps they only have time to do so much? Whatever the case, it is a sad medical system that keeps doctors from sharing essential health information with their patients.

If the problem is with exhaustion or depression, that’s equally sad, as exercise and diet can help both.

If you know anybody who is recovering from cancer—breast or otherwise—encourage them to get out and walk, to eat their veggies and fruits and reduce their dietary fat. If they have trouble getting started, offer to go walk with them and make it a social event. Bring fresh fruit for a snack.

I was fortunate in that I had made major diet and exercise changes before I was diagnosed, so I just continued my existing plan. But it had been so difficult to get started and keep going— even while I was healthy. I wonder how hard it would have been for me to get going while I was sick.

Sunday, April 20, 2008

My Bucket List

I have never really thought about what I want to do before I die. I always apparently thought I would live forever and the future would unfold nicely without my intercession. So, now that I realize I like am indeed mortal, maybe it is time to do some planning. This summer, my husband and I went to Alaska, which would have been high on a list if I had one. Here’s what’s left:

• Climb the mountain by our Colorado cabin, the East Spanish Peak. I was training to do this when I got cancer, and got ever so slightly off track. So, no more excuses. I need to at least try this year.

• Go to Machu Picchu.  The first time I saw pictures of those amazing ruins decades ago, I imagined myself climbing among them.

• Paint more. I used to paint and draw and enjoyed it, but got caught up with other things. In the closet of my home office, I have three small canvasses and a batch of paints all ready to go. Ellen and her husband got me excellent brushes for my 60th birthday. I used them when I was going through treatment and created a truly awful painting. I would like to do one that is not awful.

• Go to Yellowstone. In September when the crowds narrow.

• Spend more time with the people who are important to me—my husband, kids, siblings, nieces and nephews and friends.

• Move someplace with better weather.

• Go to Cinque Terra.  

• Sail Croatia’s Dalmation Coast.  

• Beef up the solar on our cabin.

• Learn CPR.

• Remain in a chorus of some sort.

• Start a compost pile.

• Sew something on my new sewing machine.

That’s it for now. I want to be sort of reasonable.

Friday, April 11, 2008

Alcohol and HRT increase BC risk

It may not just be alcohol that increases the risk of breast cancer—it could be hormone replacement therapy HRT plus alcohol, according to research published in the International Journal of Cancer (March 2008). Women taking oral estrogen who had one or two alcoholic drinks a day increased their breast cancer risk by three times that of women who neither drank nor took HRT. Those who took HRT and had more than two drinks a day increased their risk to five times that of those who ingested neither HRT nor alcohol.

Researchers followed 5,000 Danish women for 20 years and surveyed them on their HRT and alcohol use. Over the two decades of the study, 267 developed breast cancer.

Alcohol and HRT both increase estrogen levels. Together, they are deadly. And, while estrogen does not fuel hormone-receptor-negative cancer, it can be a factor in the earliest formation of the disease.

And the fabulous news for folks like me who miss their martinis—drinking without HRT did not increase the breast cancer risk. I am not ready to hit the bottle in celebration, because this is just one study, but I am encouraged.

So the best approach is to limit both alcohol (fewer than four drinks a week) and the length of time you are on HRT. If you need HRT to improve your quality of life, try alternative forms—I’ve mentioned this in previous posts, but here’s a reminder of what 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 loss of bone mass.

Friday, April 4, 2008

How my life has changed!

Instead of helping students understand magazines and build their careers in journalism, I now am reading things titled, "Disaccharide structure code for the easy representation of constituent oligosaccharides from glycosaminoglycans."   In case you were wondering, this is an article on "shorthand nomenclature for designating the disaccharide subunit structure of all glycosaminoglycans."

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.