• There is an old expression that says, "When life gives you lemons, make lemonade." To continue that analogy, Alexandra Andrews not only made lemonade -- she opened a lemonade stand for the whole world and has subsequently quenched everyone's thirst many times over.

Diagnosed with IBC
Alexandra was diagnosed with a relatively rare (1 to 4%) and particularly deadly form of breast cancer, Inflammatory Breast Cancer (IBC), in November 1997.

While cancer treatments in general have improved over the years, and receiving a diagnosis of cancer is certainly no longer an automatic death sentence, Alexandra was told that only 40% of patients with IBC survive the first year; only 40% to 50% of that initial 40% survive the next year. Until relatively recently, IBC had a very poor prognosis.

One researcher called IBC "the most lethal and fulminant of all breast cancers." He said of the disease: "Rapid growth and short doubling times are characteristic of IBC, resulting in local growth analogous to a 'brush fire,' extending rapidly in all directions across all surfaces and tissue planes. In addition, rapid systemic dissemination results in the death of the majority of these patients."

A true web pioneer
Alexandra is a Web pioneer -- she wasn't the first to create websites about specific diseases, and she probably won’t be the last. But her websites are absolutely elegant in their simplicity, 'easy on the download' even with the slowest modems, and tailored to the people who need them most -- cancer victims and their families, friends, and loved ones. Only someone who has experienced the terror of being diagnosed with a deadly disease could come close to doing what Alexandra has done.

Alexandra, who humbly describes herself as a "Webmaster with a God-given talent for pulling things together in a useful way," is to be commended for her courage, creativity, resourcefulness, and strength of spirit. Her story should serve as an inspiration to others who face any kind of a difficult situation in life, including but not limited to serious illness. Please note: this interview is required reading for all medical students, and that goes double for you if you plan to go into oncology.

Alexandra is interviewed
The following Medical Reporter interview with Alexandra, an IBC survivor, is intended as an honest portrait of one woman's struggle with breast cancer and of her experiences with some of those in the medical establishment.

It tells of how she transformed the worst possible situation into a wonderful way to help others -- by creating a number of easy-to-navigate, user-friendly, information-rich cancer resources on the Web.

The interview

The Medical Reporter: How did you first discover that anything was wrong? What were the initial symptoms?

Alexandra: I had what I thought was an infection. I woke up one morning with what appeared like a flea bite on my breast. It kept growing and becoming red. I went to the doctors and got antibiotics but nothing happened. I was very lucky that I had a primary care physician, James Eichel, MD, who knew of Inflammatory Breast Cancer.

The Medical Reporter: When and how did you receive your diagnosis? What diagnostic tests had to be performed to confirm the diagnosis?

Alexandra: On November 12, 1997, I had a mammogram. On November 13, I was in a surgeon's office. On November 14, I had a core biopsy with ultrasound.

The Medical Reporter: Do you recall what you were feeling at the time of your diagnosis?

Alexandra: I remember sitting in the surgeon's office and he was talking to an oncologist. These are his exact words: "I have another (person's name) in my office. We can do better this time!"

I had been told originally when given the antibiotics that there was a chance I had a rare breast cancer. Women who had this cancer died within weeks or months of diagnosis. On November 13, 1997, I was asking my son Teddy whom he wanted for a guardian.

The Medical Reporter: What was your initial means of coping with the devastating news you had received?

Alexandra: I was busy trying to find and make arrangements for my son. No one had much hope for my survival. I was also busily trying to get treatment. Things fell through for care in Berkeley, California. I had been treated for skin cancer at the University of California at San Francisco in the 70s. Because of that success, I felt that the fates wanted me to go to UCSF.

The Medical Reporter: What were you doing professionally at the time of the diagnosis and how disruptive was this experience to your life?

Alexandra: I had been studying UNIX, a specific computer operating system, for nine months before receiving my diagnosis of IBC. I was about to get a well-paying job in UNIX.

This was a bitter time for me. I had always had the dream of going back to school and getting a high-paying job when my son went to college. I had been a very faithful mother. Suddenly, I had to give up all dreams. It is very weird not to have a future.

The Medical Reporter: What did this experience teach you about yourself?

Alexandra: I learned to live in the moment. People spend fortunes meditating or following spiritual teachers trying to learn to live in the "now." I got Inflammatory Breast Cancer.

The Medical Reporter: Were there any physicians with whom you had contact early on in this process who were very helpful to you, and who deserve special praise or recognition because of it? Any oncologists you had contact with who embody the spirit of humanism in medicine? Anyone else?

Alexandra: There were many helpful people. As Teddy Andrews' mother, I was able to get help and support from US Representatives, City Council members, politicos. I went unexpectedly to one local party and they were collecting money for my funeral.

Boona Cheema, the Executive Director of Building Opportunities for Self-Sufficiency (BOSS), a multi-million dollar non-profit organization, was so helpful and supportive. She had me over for dinner every Sunday night. She helped pay for my initial acupuncture with Nancy Rakela, OMD, LAc. She called my oncologist Charles Dollbaum, MD and said things like "Alexandra is very dear to us."

I never dealt with bills when I was in treatment. BOSS did everything for me. When my insurance disappeared, they got me on Medi-Cal and on disability -- actually, IBC is rated the same as full-blown AIDS.

People receiving cancer treatment need someone to make sure the bills are paid on time. When you are really sick, it is hard to focus and pay attention to details. You are certainly too weak to fight it out with HMOs or insurance companies. That's why having someone to advocate for you, and handle your financial matters, can be a big help.

Patricia E. Wall, Esq., Executive Director of Alameda County Homeless Action Center, was very helpful in getting my Social Security Disability. Many metastatic patients do not realize that as soon as they metastasize, they are eligible.

I gave Cancerlinks.org away to BOSS. So many people helped me throughout my treatment that it would be impossible to repay everyone. Cancerlinks.org is a website that provided information to all in need. We have links to information in many languages. There is a web tutorial. It is accessible to all -- no matter physical limitations. By doing this, I feel rewarded and grateful for the opportunity.

Laura Goldbaum and Diane Scott of Womankind were enormously helpful. Laura knew about IBC because her aunt had died of IBC -- 6 months from diagnosis to death. The people at the Charlotte Maxwell Clinic provided free complementary cancer treatments. Someone sent me to a Filipino psychic healer.

Support groups and therapy are supposed to help cancer survival. Alta Bates Medical Center in Berkeley, CA and and St. Mary's Medical Center in San Francisco, CA had support groups. I was part of the UCSF Complementary Treatment Program. I saw a therapist, Deborah Krupp.

I did everything possible. Relationships with relatives suddenly bloomed. My mother, Ruth Harmon, took over my son's financial affairs. A cousin, Libby Bennett, in Swarthmore, PA became active in Teddy's care. I was able to relate to my aunt, the Honorable Isabel Burgess, who died of breast cancer. Another cousin, Suzy Cordsen, and I became close. She is finishing her training as a chaplain.

As for physicians? On the one hand, I was their dream patient -- I was offered any oncologist at UCSF because of the rarity of my cancer. On the other hand, I experienced the nightmare of the dead patient, a dead woman walking -- that's how I felt much of the time.

My sister, Heather Henry, MD, PhD, came though for me. She was at the Medical School of Georgia. I had my surgery there. Because she went with me to my appointments, everyone was very helpful. For the first time, I heard some hopeful words about the possibility of survival.

The Medical Reporter: What specific treatment or treatments did you undergo? What is the expected outcome? Do you know? Does anyone know?

Alexandra: I did the full IBC treatment and more: five Adriamyacin and Cytoxan treatments, mastectomy, four Taxotere treatments, and radiation.

I still live in the present. I can relate to those whose lifestyle is ended by a disaster. But I am not dead yet! Five percent survival for five years. As one woman told me, someone has to be in that five percent.

The Medical Reporter: What were the early effects of the treatment(s) and what have been the lasting or lingering effects?

Alexandra: I went 95% deaf from a rare Cytoxan side effect (Editor's note: Cytoxan is Cyclophosphamide, one of the older chemotherapy medications). I still have major fatigue problems from all the treatments, neuropathy, and muscle and bone pain from the Taxotere. (The radiation and Taxotere combined to give me "Taxane Toxicity.") I also still have post-mastectomy syndrome.

In general, I had a terrible time through treatment. I experienced second opinions which were everyone trying to top each other: e.g., "You are not Stage IIIB or 4 -- you are stage 5, 6, 7."

A radiation oncologist told me, "This treatment is palliative." -- this, after carefully explaining the terrible statistics of my survival from IBC. I have never forgiven him. He completely flattened me. I have never understood why it is so important to tell patients they are dead.

At one point, I told my oncologist he had to quit talking to me like I was a ghost. It was creepy. He did. Patients and oncologists need to realize the importance of creating a working relationship. This is not always easy.

I was lucky and ended up with another radiation oncologist, Jeanne Quivey, MD. She said in all her years of practice she had never seen a patient so angry. Believe me, by this time I was planning REVENGE. What is the best revenge but living well?

Anger -- we never hear about anger and cancer. Cancer is supposed to be all "Dancing in the Flowers" or "This is the most wonderful gift you will ever receive." Also, various drugs used in cancer therapy such as steroids can have rage and anger as a side effect.

The Medical Reporter: What do you know now about the medical system and physicians in general that you didn't know previously? What have you learned from the entire experience?

Alexandra: I had always believed in the kind, caring doctor. I remember doctors making house calls.

I had neoadjuvant chemotherapy (chemotherapy before surgery). Because neoadjuvant chemotherapy at that time was not the norm, I encountered a dearth of information that I would have received if I had followed the normal pattern of chemotherapy after surgery, such as:

• Basic facts about chemotherapy
• What side effects to be aware of
• What to do when my hair would fall out

(My son, my cousin Ardele, and I buried my hair on Christmas Day).

I had no idea what to expect. I never talked to a nurse practitioner, medical social worker, or support staff. Everyone thought someone else was providing basic information to me. They were not. And meanwhile, I was in free fall. But as I am still alive, going to UCSF was the right and lucky choice.

How can I put this? One of my strengths in computers is the ability to find the flaw in the code or program. I essentially debugged the entire Breast Cancer program at UCSF. It was terrifying! The Carol Franc Buck Breast Care Center did make a lot of changes to make things more functional for patients.

I just experienced this myself -- I heard about how they wanted a one-stop floor for patients. When I had a mysterious lump appear in my arm, the pathologist came and did the fine needle biopsy right there -- this, instead of me having to get dressed and going to another floor or building to have the biopsy done. I found this very comforting.

The Medical Reporter: What message, if any, do you have for physicians who have any contact whatsoever with breast cancer patients?

Alexandra: Somehow patients must become people to their doctors. Because cancer is such a harsh disease with a huge death rate, most doctors are true heroes trying to do their very best. Many oncologists are driven by statistics. Try to see and treat your patients as human beings. Metastasis is everyone's worst nightmare.

In addition, make sure you have great office staff. Anyone facing death and believing in you needs support. Try to see your patients as people. Never ever tell them, "you are cured." Breast Cancer kills 40,000 plus per year. In my opinion, this is NOT a cure.

The Medical Reporter: If you had to go through it all over again, what would you do differently the second time around, based on the experience and knowledge you have gained?

Alexandra: I would be a squeaky wheel. Good girls die. I am reminded of the videos on how to survive a plane crash. You are supposed to count the rows between you and the exit door. Do not gather belongings. Do not wait politely for others -- get out! Those that wait politely are the ones they find dead in the plane.

Also, I would try to get as much information as possible. Because I was not given any information and went into treatment blindly, I became very angry.

The Medical Reporter: What would be your single biggest piece of advice to other women who may find themselves in the same position you were in, with the same or a similar diagnosis?

Alexandra: Remember! A few years ago patients diagnosed with IBC were sent home to make their wills. Do not despair. Do not listen to the doomsayers. There is hope.

Do not believe in the statistics. Understand that if breast cancer is a mystery, IBC is the great unknown. A pathologist at UCSF who sees thousands told me he saw maybe three to five IBC patients per year. Do not blindly trust your oncologist. Go at once to the nearest teaching hospital! Realize many doctors do not know what IBC is. You need to fight for the very best treatment.

The Medical Reporter: When did you first get the idea to build a website listing cancer information resources and other educational information about cancer? What was this website called and what initial content was on it? What was the inspiration for this website and project?

Alexandra: The website started as a single piece of paper. This is from the Website:

"The Cancerlinks website began on August 20, 1998. I was in the University of California at San Francisco Radiation Department Women's' Waiting Room. A woman told me how much she wanted to use the Internet but didn't know where to start. That night, I made a paper hand out of web addresses.

"In December of 1998, Bob Gill added his HTML skills. The Association of Cancer Online Resources and Saklan.com hosted the beginning search lists. Cancerlinks.org, underBuilding Opportunities for Self Sufficiency, a non-profit agency, went on line February 14, 1999. Peace and light!!"

Cancer is a harsh disease with a harsh treatment. Some doctors are into "Don't ask, Don't tell" or the patient doesn't ask the right question. My goal was that no one else would suffer fear because of lack of information. Our motto is, "No one will be afraid in the Dark of Ignorance."

I think the website was wanted by the universe. As you know, those associated with it enjoy the blessings of the universe. I am a Quaker, and Quakers believe in leadings. This is my leading.

The Medical Reporter: How has the website evolved over time? Do you know approximately how many user visits you now receive?

Alexandra: All of my websites together have about 150,000 visitors per month. This year, we should have almost 2 million visitors. I guess if you want to count hits, we do millions. We keep growing.

I want to mention that none of this would have been possible without the initial support from the guys in the computer lab. Most people do not think of computers as cancer therapy, but for me they were. I worked at Muster Learning Architects. John Muster is the lead author of Unix Made Easy, a best seller in the UNIX world. Scott McNeil, Norman Pancner, Mike Lewis, and Bee ChingOH all gave me support, kept me involved with Linux projects, and helped me get Cancerlinks started.

The Medical Reporter: As a breast cancer patient and breast cancer survivor, why didn't you limit your website's content to breast cancer and, more specifically, to the type of cancer you were diagnosed with? Why did you decide to include information resources on all different types of cancer? What was the inspiration for this?

Alexandra: I started this for breast cancer. A woman I knew asked me to please do one for her friend with pancreatic cancer. I did it and she died three weeks later. Then someone asked me for a prostate one, then someone asked for one dealing with melanoma, and so cancerlinks.org grew and grew.

Each search is separate and distinct for each different kind of cancer. That is why I made Cancerlinks. There are many of the same issues for each cancer. I wanted Cancerlinks to be more global.

The Medical Reporter: What other cancer-related Internet projects do you call your own?

Alexandra: I do the websites for Malin Dollinger, MD, Ernest H. Rosenbaum, MD and David Spiegel, MD, Andrew Kneier, PhD, and Nancy Rakela, LAc OMD.

I am also the list owner of Club-Mets-BC. This is an online support group for metastatic breast cancer patients (men and women). Some are parents dying with very young children. It is heart-wrenching.

My other lists are Inflammatory Breast Cancer Discussion Group and Metastatic General Cancer Discussion Group. In July of 1999, Louise Heyneman and I became partners in Cancerlinks, LLC. Cancerlinks.net contains a complete current listing of our websites and projects.

The Medical Reporter: What feedback have you received from website users, physicians, members of the media about your websites? What magazines or broadcasters have done pieces about you and your work to date? What has been said about you and your work?

Alexandra: People are very supportive of my work. I have had articles in MAMM (April and June 2001) and The Berkeley Daily Planet.

The Medical Reporter: What role do you feel your illness has played in the development of your websites? How has it helped or hurt their development?

Alexandra: I just finished writing a handbook, Web Access Made Easy, The Programmers Guide. This is how to write websites that all can use -- the blind, the color blind, the bifocal wearer, those with 28k modems, and so on.

Because I was writing cancer sites, I became aware of this hidden digital divide. Also, as a patient, I know what many want. I am a big believer in the team approach, so I am always listening to feedback.

The Medical Reporter: Is there any special message or messages you have for women breast cancer survivors or their families?

Alexandra: There is life after breast cancer. Think of breast cancer as pregnancy. Your life is changed.

The Medical Reporter: What, in your opinion, are some of the biggest general public misconceptions about breast cancer?

Alexandra: That there is a cure. I do not believe this to be true. The number of deaths (40,000+) has not changed in the last 20 years.

The Medical Reporter: Are there any physicians who have worked with you in the development of your websites who deserve special recognition or commendation?

Alexandra: Ernest H. Rosenbaum, MD. His new book, Cancer Supportive Care, is now available.

The Medical Reporter: What projects have you undertaken so far related to your cancer information and education websites that you feel are your greatest accomplishments? What's next up for you? Now that you have done all that you have done, what is your next goal, ambition, or challenge?

Alexandra: I have written chapters in the new editions of Supportive Cancer Care (old name Cancer Supportive Care) and Everyone's Guide to Cancer Therapy. We have written web tutorials for beginning users. I am writing a tutorial on listservs.

I want to write many small, helpful books for people with cancer -- for instance, a book on post-mastectomy syndrome. When we broke that story on Cancerlynx, thousands were suffering and being dismissed. The Canadian Medical Association says that 10% to 30% of all breast cancer patients, those with lumpectomies included, have this problem after surgery or radiation each year!

The Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer says this: "The post-mastectomy syndrome is a fairly common sequel of breast surgery. All patients should be warned that it may occur, and that if it does, it does not signify a recurrence of cancer. Between 10% and 30% of patients will suffer persistent pain after breast surgery; it is more common after axillary dissection or total mastectomy than after breast-conserving surgery (BCS)."

The Medical Reporter: What do you know now that you didn't know then (when you first started this incredible journey), and how has it changed your life or your perspective on life?

Alexandra: If not for the experience, I probably would never have discovered the joys and blessings of Cancerlinks. Having a reason to jump out of bed each morning is something I am very grateful for.

There is a saying, "Great tests are great gifts." I feel so blessed to have the opportunity to do these websites. It is a great gift to me and gives me purpose.

See also

• Sharing experiences
• Shared stories
• Giving back
• Other sources of support