| Cancer... There's Hope
Chapter 13 |
About Preface
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Centers Epilogue Authors Glossary Chapter: 1 2 3 4 5 6 7 8 9 10 11 12 13 14 |
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We have done a great deal of writing about my personal case and about cancer treatment as it exists today. Let's go a little further and explore what the future may hold. Realizing that most people reading this book have cancer or have a friend or relative with cancer today, why talk about the future? Because the future is not five or ten years from now. The future is this afternoon, tomorrow or the next day. By the time this book is printed and you have read it, a great deal of the future will already be here. The National Cancer Institute is spending over $4.6 billion dollars a year to eliminate the cause and create a cure for cancer. It has been in existence since 1930. Tremendous strides have been made in treatment in this period. Yet, recent statistics show only 62 percent of serious cases survive five years or are technically cured. M. D. Anderson is an institution to which many physicians will refer their patients only after they believe there is no more hope. Supposedly, they get the worst of the cases and often after a physician has experimented with various treatments. In 1982, an official of M. D. Anderson told me their cure rate was 52 percent when the national statistic was 42 percent. I asked what he believes their cure rate would be if they received patients promptly upon diagnosis. His answer was, "Conservatively 62 percent." What does this mean? This means that, on an average, if patients with all serious cancers were treated promptly, properly and thoroughly, better than one out of three who now will die, would be cured. How do we disseminate this currently existing knowledge and ability to save lives to the patients who need it? The billions of dollars invested and the millions of lives lost and hours spent to establish these life saving treatments are totally wasted if one doctor treating one patient is unaware that these treatments are available. A company called CompuServe in Columbus, Ohio, had gigantic computers and a private telephone network to most cities in America. H&R Block had acquired this company. Certain major newspapers used computers to set their paper. These computers fed directly into our giant computer. I had a $299 Radio Shack terminal in my home that I connected to my phone and my television set, and I could read any part of any paper I chose. I spent many sleepless nights going over in my mind how I could apply this remarkable technology toward the goals I so desperately wanted to achieve. Annette and I would sit and talk for hours knowing that somewhere, somehow there was a way. We believed the R. A. Bloch Cancer Management Center would bring the best possible treatment to Kansas City and other major cities that would eventually copy it. But what about all the people living in small towns and rural areas where there is a lack of qualified cancer physicians? We came up finally with a concept that we felt was unique and exciting. It was to put every known therapy for every type of cancer under every condition into a computer. A doctor anywhere in America, on his own or his hospital's computer terminal, could make a local telephone call and be connected with our main frame in Columbus, Ohio. He would enter the type of cancer, location, age, sex, and present medical problems. The computer would immediately come back with the recommended treatments from the different Centers, along with necessary precautions because of current physical conditions. In the 12 percent of cases that would require experimental therapy, the computer would not describe the treatment but would show where the relevant experimental therapy was being offered. Furthermore, for a subsequent period of one year, the computer would automatically call the physician back to advise of any changes or improvements in the treatments. To get all this information into a computer was a monumental task. We knew of no way of doing this other than through the National Cancer Institute. If the premise was right-that prompt, proper and thorough treatment could increase survival from 42 percent to 62 percent-then if more than 800,000 Americans get cancer each year, this program could conceivably save 160,000 lives each year. The results would make the enormous investment well worth while. A total cost of this service, including the long-distance charge, computer time and call backs, would be a flat ten dollars. We intended to promote this service by saying that anyone who believed that his or her life was worth ten dollars would ask his doctor to get this for him and would read it and discuss it along with his doctor. He would then know all the options and be able to be involved in the treatment, one of the requirements for recovery from cancer. Any doctor hesitant about getting this computer printout would be implying that he knew more than all the scientists and doctors across the nation in treating this particular kind of cancer. In November 1981, Annette and I made an appointment with Dr. DeVita, director of the National Cancer Institute in Bethesda, Maryland, to discuss this concept. His reaction to this idea was extremely favorable, and his comment was that it was the greatest idea to reduce the mortality from cancer that he had heard since he had been practicing medicine. He assured us that it would get done. As this program held tremendous potential, we feared our aim could be misconstrued by certain persons suggesting we were doing this to give CompuServe, then a subsidiary of H&R Block, business. Annette and I therefore sold our holdings in H&R Block, Inc., in November 1982, and I resigned from the board of directors to confirm our sincere belief in this program. PDQ has been available since 1984. I suggest patients call 1-800-4-CANCER and request the state- the-art therapy for their specific type and stage of cancer only. Or, they may access it directly through our web site at www.blochcancer.org. Also, they should request all current open protocols from everywhere in the United States for their specific type and stage of cancer. This will give you peace of mind knowing your doctor is giving you the best possible treatment. If you have any questions, ask your doctor. To continue on the theory of prompt, proper and thorough treatment with a positive mental attitude, let's discuss the mental attitude part. Several things have happened lately to make me all the more aware of how important mental attitude is in recovery. So that you won't get the wrong impression, I want to emphatically state that it takes six factors to recover from cancer: first is the finest possible medical treatment; second is the finest possible medical treatment; third, fourth and fifth are the finest possible medical treatment; and sixth is a positive mental attitude! Without all six, the cancer patient will not make it. In the early stages of our Cancer Hot Line, we had two "cured" volunteers who had to stop taking phone calls because they could not bear to talk about cancer-related problems. I told Annette at the time that in spite of what their doctors had told them, they were not through with cancer. Since that time, one has passed away and the other has a new malignancy. I sensed that they subconsciously felt that they were destined to die of cancer. Sometimes when one feels strongly enough about something, it can almost be willed to happen. In visiting the Cancer Management Center with a New York physician who was interested in duplicating it, we met a patient who refused to allow her friends to know that she had cancer. He agreed that she had condemned herself to death if she could not bring about a change in her mental attitude. I met a very cheerful lady who has had three bouts with cancer. She said that her attitude is very positive and she is going to beat it this time, too. She has a wonderful doctor. I asked whether her doctor gave her a favorable prognosis. She said she had never asked him, because she was afraid of what he would say. This meant to me that way down deep she did not truly believe she would make it; otherwise she would want to hear what the doctor, in whom she had faith, would say. She needed some psychological support. Realizing the importance of mental attitude in the recovery from cancer, we put together a panel of two psychologists, a psychiatrist and a social worker. Their goal was to design a simple, short questionnaire that could be graded precisely. This would show a cancer patient that psychological assistance could conceivably improve the receptiveness to successful medical treatment. With the help of a group of psychologists and psychiatrists from the National Cancer Institute and another group from Memorial Sloan-Kettering, this quiz has been developed. It is available in the book Fighting Cancer, by calling the Bloch Cancer Hotline, 1-800-433-0464, or on our web site at www.blochcancer.org. At each meeting of the National Cancer Advisory Board, we are apprised of the dramatic progress in cancer knowledge and treatments. It is coming so rapidly that it is mind-boggling. The greatest progress being made today is with monoclonal antibodies that are not only used for early detection and staging but armed with various substances for actual treatment and immunotherapy. This would include interlukens, interfuron and tumor necrosis factors, each attempting to strengthen the immune system to avoid or cure cancer without toxicity. We were told that changes in this area are coming about so rapidly that research projects started six months ago are obsolete today. Of course, the greatest hope of all is to some day have an injection that will make a person immune to cancer. What I am trying to emphasize is that even if there is no cure known today for a particular type of cancer, the individual should make every effort to fight the disease, because tomorrow a successful treatment could be discovered. Annette and I receive many letters from individuals thanking us for giving them courage or pointing them in the right direction to try to fight their cancer. We appreciate and treasure each of these letters. Each one of them makes all our efforts worthwhile. Normally, we do not share these with anyone; however, we want to make one exception with the following letter because it demonstrates so vividly two specific factors. First is the type of individual we strive hardest to help: that is the one who honestly and sincerely wants to help themself; the one who will pull out all the stops and keep trying, no matter how many road blocks are encountered. Second is to answer our most common critic: the one who accuses us of giving false hope. After all, I was told I was going to die. There was no hope. And here I am. How much worse off is this lady for having hope? You tell me! (All names have been changed.) On the front of the note paper is printed, "Life is a miracle, and the right to live is a gift. It's wrapped in a ribbon woven with dreams, and whether you are very young or very old, life is filled with wonder and surprises." July 19, 1985 Dear Dick- I'm sorry to be so long in letting you know what happened to me. You were so kind and patient and helpful. Seems I called you so many times. In Sarasota, lovely as it is, one is cut off from the 'real world' - where research is being done. It's 'status quo' here. Had I not been led to where I am, I would have been left to die here of melanoma. But I was not because of the Hot Line, the Cancer Information Service in Bethesda and a girl (because my oncologist refused to avail herself of your PDQ) (Ed. Note: The Cancer Information Service had told the patient on the phone that they had enough currently active protocols for her type of cancer to fill a Manhattan telephone directory. Her physician said she did not have time to read them, that none of them could help her and she would die anyway). The girl [I spoke to at the Cancer Information Service] gave me random places on the East coast and in the South where PDQ showed research being done. Some of the programs are 'down' however. She told me, as you did, about Dr. White at the University of Miami. His program for melanoma is down but after 3 calls to him, he referred us (and made an advance call) to Dr. Black at Mt. Sinai in Miami Beach. Dr. Black is chief of general surgery and oncology. He was chief of staff till 2 years ago at Barnes in St. Louis. He's been researching melanoma 13 years (he is only 40 now!). He is working with Duke and Emory on immunization therapy. Jack, my husband, sat in my oncologist's office 3 hours to make her call Dr. Black. You see, Dr. Black called my Jack after Dr. White called him but could not make an appointment to see me until the oncologist called him. Jack sat right there till she finally called. She told him I'd had a node out before that and scans showed another close by. Otherwise no invasion of vital organs and blood count normal. We made an appointment and saw him the next week. He examined and talked to us at length. He told me he had a program funded by NCI for 40 melanoma patients and if he took me, I'd be the 37th. But first he made an appointment for a few days later for an all day session in nuclear medicine - 9:30 AM till 4:30 PM - then pre-op work-up (i.e., X rays, EKG, etc.) for surgery of large node and the whole field of nodes in left neck area (modified radical). This all happened a week ago today. One of the country's top head and neck men did the surgery, Black assisting. Path report: large node seen on scan malignant and all others removed were 'clean'. I look rather like I'd had a head transplant. Tomorrow we will be in Miami again for staple and stitch removal and then back next Thursday to begin 'the program'- I'm in- praise God. The program consists of 1 shot every week for 13 weeks and then every other week for a year. Because I live so far away, Dr. Black will allow a doctor here to administer the serum (whatever it is) and I'll only have to go to Miami every 3 months. Isn't that lovely. Best part? I was admitted as a 'teaching patient' as I explained our financial situation and have no insurance at this time. No cost for anything. Isn't God wonderful? We've had rotten luck so long. I adore them over at Mt. Sinai...As the doctor who did my surgery said, 'Sue, don't look at the statistics. You're a human being and your attitude is great." I called to thank Rabbi Gold for insisting Jack and I come hear you the night prior to our marriage - for if I had not heard you, taken your pamphlet and finally 20 months later called you, I would be sentenced to die. I thank you and Annette who have done so much good for so many of us about to give up. Your book was waiting when I got home and what perfect timing! Thank you so very much. I was with CBS 15 years - interview shows, news, a syndicated show ... if you ever get too bogged down with speaking engagements please accept my offer of using me at no charge to speak wherever the need is. I wish to devote my life to getting the Hot Line in people's hands and stressing how one must have more than one person's opinion. My love and heartfelt thanks to you and your team... You probably (with God) have given me extra time here on earth to love and be loved. God bless you and yours. Sue
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