Learning about Cancer the Electronic Way

In a different time in the not so distant past, we lived in a world where doctors and nurses were the proprietors of medical information and research was done in libraries. The libraries had rules—there were hours to observe and membership cards for entry.

It would have been hard to imagine, even ten years ago, a different world, one in which a person with cancer could get information in other ways. Even ten years ago it would have seemed unthinkable that excellent information—the stuff of medical books—or another soul to quell the fear could be available 24 hours a day with the touch of a button. This is the world we live in today.

Gilles Frydman

The Internet, with its vast network of information, both good and bad, has become a resource for people with cancer. Many excellent Web sites, such as the National Cancer Institute’s or the Blood & Marrow Transplant Network’s site, exist to provide people with information, resources, hope and contact. Today a person with cancer can arrive home from a doctor’s appointment confused by a diagnosis and go to his personal computer for help. The same person can wake up scared in the middle of the night, write a few lines at a computer, press send, and get a response in minutes or hours.

A Man with a Need and the Internet Join Forces

In 1995, a man named Gilles Frydman received disturbing news. In a ten-minute conversation, a physician conveyed to Gilles and his wife, Monica, that she had ductal carcinoma in situ, an early form of breast cancer. “What must she do?” said the doctor—“a mastectomy, chemotherapy and then some reconstruction to fix it all up.” Monica Frydman said no. Gilles Frydman took his wife home.

“I was in shock and thought she was going to die,” says Frydman.

Not knowing where else to turn, he went to his computer, got on the Internet, and, within ten minutes, found a breast cancer mailing list, one of four lists about cancer that existed at the time. He logged on, foregoing introductions, jumped right in, and told his wife’s story—asking if the directive she was given was, in fact, the best treatment. Answers came quickly from the community that Gilles sent his message to but couldn’t see—the virtual community: lumpectomy and radiation, and a list of the best doctors for treating Monica’s form of cancer.

Four years later Monica Frydman is fine, and her husband has a mission: to provide a tool for people with cancer to gather information so they can make sound decisions about their own bodies. His passion for the Internet and for people’s right to have access to information about their own disease led him in 1995 to create the Association for Online Cancer Research (ACOR), a vast cancer Web site (www.acor.org) dedicated to getting information about cancer, its treatment and ramifications to the people who need it.

“It is your body and you should be able to do the research, and make yourown decisions if you want to. It should be your choice,” says Frydman.

After his wife’s treatment, Frydman continued to follow the lists. The quality, amount and complexity of the information, and the generosity of the people giving it, astounded him. But after the information appeared on the Internet, it quickly disappeared. “It was a crime that no one archived this information so people could search for it later,” he says.

So he contacted the list owners, and asked them if he could do that for them, and if they would like to co-exist under one Web roof, allowing people to find them more easily and to search for topics of interest. ACOR was born.

Later in 1995, seven more lists were created and Frydman invited them to join, too. The power of these interactive communities—communities that form when people have the same goals and interests and the power of the Internet to bring them together from anywhere in the world—are the core of ACOR’s success. “There is nothing black or white in cancer,” says Frydman, “It is always much more complicated than is reported in the general media. I want to give voice to the nuances and the complexity.”

What is a Mailing List on the Internet?

A mailing list on the Internet, also referred to as a listserv, is a group of people whose interests are organized around any given subject. There is a list owner or manager (or more than one) who is there to handle technical problems or help the discussion along. Anybody interested in the list can post messages to it—information, questions, a letter of empathy. Often, the user of an ACOR list is a patient, but also can be a family member or friend, a caregiver, or someone looking for answers to questions about cancer. Posts are made to the list address and each person using the list receives them. Sometimes, relationships form and people send individual posts to each other.

Barb Lackritz

A list differs from a chat room. “In a chat room everyone talks at once. You sign on to the chat room and join the conversation,” says Barb Lackritz, best known as GrannyBarb, and the list manager of Chronic Lymphocytic Leukemia, or the CLL list, as well as many of the other 89 total lists now publicly housed at ACOR. The various lists tend to reflect the personalities of the active list owners, according to GrannyBarb, described by one user as the big kahuna angel of the lists.

GrannyBarb’s CLL list, as well as her Leukemia Links Web site, started with a promise she made to herself: that no one would ever have to feel as alone as she did when she received her own diagnosis. “I will always be there for a cancer survivor,” she says. The CLL list currently has over 1,500 members, is growing quickly, and has members from 36 countries.

Using ACOR

The home page of ACOR gives an overview of the entire Web site. It offers news and eight tabs to select, depending upon where a user wants to go: Search; About Us; CancerNet; Chat; Glossary; Contact Us; Links; and Mailing Lists. These tabs help the user connect with the National Cancer Institute Web site, learn more about ACOR, join a chat room, look up cancer terminology, link to other cancer organizations’ web sites, or join a list—on topics ranging from fatigue to rarer forms of cancer like adenoid cystic carcinoma.

A statement on the home page hints at the void the lists fill: “Last week ACOR delivered 1,467,046 individual e-mails across the globe.” People have, of course, different needs and use the lists differently. Hazel Silverstein is an every day user. She was first diagnosed with breast cancer 16 years ago and felt generally knowledgeable and equipped to find answers and support with friends who also had breast cancer.

But four years ago at a routine check up she found that she had CLL. She knew nothing about it. “I didn’t function for six months,” says Silverstein. “I told almost no one.”

After that she found a general weekly support group where someone tipped her off about the lists. She subscribed to CLL and began to read the posts. “I just felt like I had come home,” she says. “Before finding the CLL list, I called all the usual places. Some felt too basic. Others raised more questions than they answered.”

“I feel like I benefit from other people’s questions,” she says. “Should we take vitamins? Should we get a flu shot? I find many other things we can do for ourselves. It’s really educating us. The people who participate are so warm and caring, you can’t buy this; it’s a gift.”

A Gift Among Many

One of those gifts Silverstein mentions is Susan Leclair, MS, CLS (NCA), professor of medical laboratory science at the University of Massachusetts at Dartmouth. Leclair contributes regularly to five lists, yet is not a cancer survivor, a relative of a survivor nor a caregiver.

So why does she participate?

Several years ago she was teaching a class of students who were “technically spectacular and had the compassion of a snail,” she says. She found the hematology/oncology list and got on to ask if people would mind if she used their posts without names to show her students that there were real people behind the blood samples.

After seeing and responding to a post, which was a “blastingly and rightfully angry letter about late labs, I answered other questions and found a calling,” says Leclair, who is concerned about the lack of sound knowledge about laboratory values and their meaning. “Someone has to explain this stuff.”

As one thing spun into another, Leclair created the Consumer Laboratory Testing Page, on her professional organization’s (American Society for Clinical Laboratory Science) Web site. The Web site has a link at the bottom of the page that connects users to professionals in the areas of hematology, microbiology, immunology and biochemistry who will answer questions about laboratory values. The link is located at www.ascls.org/labtesting/index.htm.

“This work ended up filling a need for me as a teacher,” says Leclair.

People Teach Each Other

But those who are not teachers by trade also teach on the lists. Witness a recent question posted to BMT-Talk, a popular list with over 1,100 subscribers, and the flow of information and suggestions the poster received:

“My doc is planning on giving me a BMB. (A BMB is a bone marrow biopsy, different than a bone marrow harvest, which donors undergo.) I haven’t had one for almost a year. Before that I had had many, maybe 15 or so. They started out easy to take and progressively got worse to take. I am now TERRIFIED of them to the point where I hyperventilate and almost pass out. Although it probably isn’t true I worry that it will do permanent damage to my hip, it is very painful at the beginning, and it grosses me out beyond anything I know. I now have problems with one of my hips and I guess I’ll never know if it is due to BMBs. During some of my BMBs they gave me a sedative, which didn’t seem to do anything. I would always insist my wife be with me so I could hold onto her, but by the time it was over she would have no circulation in her hands and almost a few broken bones. Does anyone have any suggestions on how they dealt with a phobia like this?”

That day the answers came pouring onto the list from around the world and were still coming four days later. Others were posted privately to the man who had become terrified of bone marrow biopsies. Here are a few:

“Have you tried Versed? The best BMB I ever had was from my local hem/onc, who used Versed—I was kind of awake but felt & remembered nothing.”

“I second the vote for the Versed (with a little Demerol thrown in…).”

“…IV Diazepam is the intended drug. A short and mercifully deep sedation without actual anesthesia—and usually amnesia about the actual event. You really deserve this after excruciating BMBs.”

“Two Vicodans plus Atavin. I can’t say it didn’t hurt but it wasn’t nearly as bad as I thought it would be.”

Andrew Schorr is a cyclical user of the lists and found the same kind of support when he faced his first bone marrow biopsy. The medical center he was attending did the biopsies without anesthetic. He used the lists and discovered how the team at his medical center had become so adept at doing the procedure that they did them almost painlessly. “I had been so scared before I got this information, but became inoculated by the people who had been there before me.”

Schorr, who was diagnosed with CLL a few years ago, has no symptoms, but a very high white blood count. The creator and host of HealthTalk (www.healthtalk.com), a live broadcast over the Internet, he’s producing a growing list of health- and cancer-related media venues. Schorr jokes that he’s becoming “the Larry King of cancer.”

The day he discovered his leukemia, “the dream that my wife and I had for our family was put into question…We didn’t know anything.” They found the CLL list within several days “and their despair was alleviated.”

But, he adds, the lists aren’t for everyone. “You need a filter in your head. Everyone takes something different away from the lists. Not all posts will apply to me today and some never will. I take away what I need.”

Some Find Instant Comfort

Stella Draper of Warwickshire, England, the wife of a bone marrow transplant recipient, has been using the lists for some time for information and support. She also offers those things to others. Here’s a post that she recently made to a new subscriber who had written for advice:

“I sympathise with your predicament, you are so young. There is a school of thought which says aggressive treatment and a BMT is best for young people and it is the chance of a cure. Read Tom and GrannyBarb’s stories. The top world experts agree that a BMT is the chance of a cure, without that there is not a cure yet.

“My husband is 55, still statistically young to have CLL, and has gone through 2 years of chemo and had a BMT on November 18th. He is now at home and feeling very well. The BMT was not as bad as we both feared. He is feeling so well I have a job to stop him from doing things. Thirty-four days after transplant he is painting thekitchen and doing 4 to 5 hours office work a day. He is driving, around 100 miles a day on top of this.

“Although you and your wife are in shock just now, this is something you will get through.

“I find I cope best by finding out all I can about CLL, the treatments, trials, new medications. On the other hand my husband does not want to know anything and pretends nothing is wrong.”

“For some people, it’s just too much. We don’t all have the same coping mechanisms,” says GrannyBarb.

“There’s some information that people do not want to know, like what might happen next,” says Susan Stewart, the executive director of the Blood & Marrow Transplant Information Network. “There’s a lot of good that these lists do, but for some they’re not helpful. That doesn’t speak to anyone’s character or strength, just to what helps them and what does not.”

Some Like the Pace

Roberta Gabel likes the anonymity of the lists and the time that one can take to reflect before responding. Diagnosed with non-Hodgkin lymphoma in late 1994, she had an autologous transplant 31¼2 years ago.

“I’m not a person who does well in support groups— I’m not good at, ‘Let’s all think about how we feel.’ But I have made friends on the lists I use. Sometimes another person and I happen to touch each other.”

Having been in the medical system with cancer for five years, she sees a growing acceptance by physicians of using information found elsewhere. “They are more open and I am more educated and I think that combination works well,” she says. “When I have something I want to talk about, I give advance warning and they make a longer appointment or give me a second one.”

Patrick Stiff, M.D., director of the bone marrow transplantation unit at Loyola Medical Center in Chicago, is receptive to his patients’ use of information gleaned from outside his orbit. “My experience has been positive. Most patients who use these services come in already knowing their prognosis, and thus the shock of hearing what is often bad news has worn off. They are more receptive to hearing about their options, and in general ask very good questions.” He worries, though, about the glut of misinformation gleaned from bad sources on the Internet.

Concerns About Access

Although the growth of Internet use is meteoric and her own organization has a web site, Stewart expresses concern for those who don’t have access. “The lists are wonderful, but they are not yet accessible to the majority of cancer patients. Even if someone has access to the Internet, they may not know how to navigate it and get the information they need, and the middle of a cancer crisis may not be the best time to learn.”

For those who don’t have Internet access, but want to use these resources, a public library, school, relative or neighbor may be able to help. Or, Stewart suggests, organizations like hers can help cancer patients connect with others who’ve been through a transplant.

“Our Patient-to-Survivor Link service can be accessed by phone or by Internet, our Resource Directory provides links to other organizations both on and off the Web, and our Transplant Center Directory enables people to search for centers that perform specific types of transplants for specific diseases,” Stewart says. “We’re working to make the wonderful resources available on the Internet just as available to those without access.”

Susan Leclair believes that the resources will become more and more available as people begin to use the Internet in greater numbers. “There are brilliant moments and horrible ones on the Internet,” says Leclair. “But, in general, I think it will become as essential as electricity or washing machines.”

The Future

Gilles Frydman agrees and, as such, believes that ACOR has much more work to do. He is especially interested in bringing more access to people around the world through multi-lingual lists; providing more privacy to users through his growing expertise in security issues; and by making people aware of clinical trials, connecting them to cutting-edge medical care.

“I like the lists because they represent a perfect idea of what democracy should be,” says Frydman. “Democracy that works requires that people be informed. It kills the fear.”

For Roberta Gabel, it’s very concrete. “There has been knowledge that I’ve gained on the lists, like about drug reactions and interactions, without which I would have been in trouble. It’s literally been a lifeline.”

Advances in Research Reported by Hematologist