Read an Excerpt
CHAPTER 1
Diagnosis
My cancer was found by accident. Years ago I had a lung disease, and it left behind a nodule that had to be checked periodically. The routine CT scan showed that it had not grown, but it also showed an enlarged lymph node in my left armpit. My internist didn't think it looked cancerous, so I didn't worry. We followed up with an MRI, which confirmed the enlarged lymph node but no cancer in my breasts.
This was December, 2010 and I went off with my family to celebrate the holidays in Venezuela. When I returned in January, the internist had looked up my last mammogram, and the lymph node was there too. The gynecologist who ordered the mammogram had not told me, maybe because he didn't consider it significant, or maybe he was just careless. Neither I nor my internist could feel a lump.
But I was used to cancer scares and I no longer worried about them. I was 68 years old, and over decades I had had several needle biopsies and one excisional biopsy, always in my left breast, and everything always turned out benign. I had fibrocystic changes, but no cancer. So far as I knew, nobody in my family had breast cancer; my parents lived to ages 86 and 99 respectively, and I just never thought breast cancer could happen to me.
My internist thought I should see a breast cancer specialist, just to make sure. The specialist, a surgeon, could not feel anything either, and he didn't think it was cancer, but he thought a biopsy might be a good idea. On January 13, they did an ultrasound-guided vacuum biopsy of the lymph node in my armpit. The procedure was very painful. (A friend of mine whose father is a doctor, later told me that the reason it hurt is that medical practice is to give only one painkiller shot, to save money, unless the patient specifically requests a second one. This piece of information stood me in good stead for the biopsies that were to follow.)
I was not worried when I went to my follow-up appointment with the surgeon. When he told me my diagnosis, metastatic carcinoma, I went numb. Then, very rapidly, I leapt into Elisabeth Kubler-Ross' first two stages of grief: denial and anger. I thought the lab had misdiagnosed me, and I was filled with indignation at their incompetence. I became angry at the gynecologist who had not told me of the enlarged lymph node on my mammogram. He had also urged me to take hormone replacement therapy, even though there was some evidence that it could cause breast cancer. I was angry at myself for letting him persuade me. I was angry at the internist and the surgeon for giving me news I didn't want to hear, even though friends pointed out that the internist had possibly saved my life. I had a distrustful attitude toward all the doctors I would meet in future months. However, knowing what I know now, I think that my skepticism served me well.
The lymph node tested positive for breast cancer, although they were not sure whether it was lobular, coming from the milk-producing glands, or ductal, in the milk ducts. In either case, breast cancer in the lymph nodes is supposed to mean that it came from a primary tumor in the breast. However, they could not find any cancer in my breasts. On January 17 they did an ultrasound of both breasts and again found no cancer. On January 18 they did a blood test, and my tumor markers were normal. On January 20 they did a PET scan to see whether there was cancer anywhere else in my body, and CT scans of my neck, abdomen and chest. On January 24 they did a bone scan of my whole body. There was no evidence of cancer anywhere except the lymph node. On February 2 they did another MRI of my breasts. This second MRI was considered inconclusive, so on February 22 they did an ultrasound-guided biopsy of two of areas in my left breast. (This time I asked for, and received, an extra painkiller shot). Negative again.
As soon as I got my diagnosis I did two things. One was to start educating myself about breast cancer. I read books and I went on the Internet. There are many websites that give information, and some of them have discussion boards where patients can communicate with each other. This proved to be an invaluable resource at every stage of my treatment. I learned things that few cancer patients know. I also got a feeling of solidarity and emotional support.
The other thing I did was to tell a lot of people about my diagnosis, and I gave them permission to share my information with anyone they wanted. The unexpected result of this was that I received a huge wave of support, not only from friends, but also from strangers. Breast cancer is unfortunately very common, and an amazingly large number of people told me they had had breast cancer or they had friends who had, and all of them wanted to share their information with me. One of them insisted that I go to a breast cancer support group at the Cancer Support Community, which is a national organization offering free services to all types of cancer patients and their families. At first I resisted. I was still trying to lead a normal life, and the night the group met was my belly dancing night. I did not think the group would be as helpful to me as belly dancing was. I was wrong.
I have been in many groups of various types over the years, and I found that people usually deal with their problems using denial and projection. To the extent they admit there is a problem at all, they try to shift responsibility off themselves and onto their parents, mates, children, employers, or enemies of various sorts. But when it comes to cancer, denial and projection simply do not work. The problem cannot be denied, and blaming others is pointless. This was a truly authentic group of people. It was both fascinating and moving watching them, and myself, go through the process of dealing with the unthinkable. The group was restricted to early-stage cancer patients, so nobody was dying, but several were dealing with recurrences. My family and friends were supportive, but unless they had personally experienced breast cancer, they just could not understand. This group understood.
When I arrived I was still in denial, and being there was like being in a cold shower. Partly because nobody had found cancer in my breasts, but mainly because I felt perfectly fine and had no symptoms of any kind, I was still hoping my diagnosis was a mistake, and I was searching for some way to escape the whole thing. My cancer experience seemed unreal to me, and the group made it real. They were in all different stages of cancer treatment: some, like me, were preparing for surgery; some had already had mastectomies and were undergoing reconstruction; some were undergoing chemotherapy; some were getting radiation; some were dealing with the side effects of their anti- estrogen hormones. Some had refused conventional treatments and were trying alternatives. Some had even finished their treatment completely but had come back to talk about living with the aftermath. The group taught me the reality of cancer.
Another thing the group taught me was gratitude. I was usually the oldest person in the group, and I was profoundly grateful this had not happened to me when I was younger. I was retired; my children were grown; I had good health insurance and enough money to cover whatever my insurance wouldn't; and I did not have so many years to worry about recurrence. If the cancer returned in 10 or 20 years, that would not be as big a deal for me as it would for those now in their twenties or thirties. Because of my age I had already known people who died, and I had traveled farther along the road of accepting my own mortality. We had one beautiful young woman in our group who had a double mastectomy at 23. Because the treatment can cause sterility, she did not know whether she could have children, and if she could, she didn't know whether it would be fair to give birth to children whose mother might die prematurely. (Adoption agencies may also be reluctant to place children with people who have a history of cancer.) Sex was an issue for many, especially after mastectomy. Another woman had children who were too young to understand cancer, but they were terrified by her chemotherapy-induced baldness, by her fatigue, and by her wig. There was a woman in the group in her fifties who had been happily married to her second husband for 16 years. When she was diagnosed, he divorced her, taking his health insurance with him. She had to move in with her daughter and deplete her savings to pay for treatment. Families were a problem for many of the patients. Some could not even tell their families they had cancer, because their relatives would fall apart and the cancer patient would be left with the stress of having to take care of them. I was very lucky that my family and friends, especially my daughter, were a source of support. Employers were another big source of stress. Most of the people in the group still had jobs. Because of the Americans with Disabilities Act, in most cases employees could not legally be fired for taking time off for cancer treatment, but some had employers who tried to make their lives unbearable enough to make them quit. Under the circumstances, they would have liked to quit, but doing so would have cost them their health insurance, so they were trapped. These kinds of stresses are not healthy for people coping with cancer.
Another source of support I had was a meditation group that I had been attending weekly for about 15 years. After I was diagnosed, after each meditation session, I would sit in the middle of the circle for a few minutes, and everyone would point their open palms at me and chant "om." I could feel their energy and their love. I don't know what effect it had on the cancer, but it was very helpful for my mood. I believe that the body and mind are connected, and that my thoughts and emotions can affect my health. I was grateful that I knew how to use my meditation skills as tools to straighten myself out whenever I was in danger of being swept away by negative thoughts or feelings.
In between my tests, the surgeon sent me to meet with a medical oncologist, a radiation oncologist, and a plastic surgeon. The medical oncologist does chemotherapy. She explained to me that chemotherapy would be necessary in my case because the cancer had metastasized outside my breast, and even though the scans showed nothing, microscopic cancer cells could nevertheless be roaming around my body. The purpose of chemotherapy is to kill those cells. The radiation oncologist explained that I would also need radiation in my armpit and left breast to kill any local cancer cells that might have survived the surgery and chemotherapy. Depending on the cancer, a patient can sometimes choose either lumpectomy followed by radiation or a mastectomy without radiation. If the patient chooses lumpectomy and the cancer later recurs and requires a mastectomy, options for reconstruction are much more limited on a breast that has been radiated, I suppose because radiation causes scarring. However, in my case, radiation would be necessary even if I had a mastectomy, because I had lymph node involvement. I accepted the information, but privately I did not agree to any of this.
The plastic surgeon does breast reconstruction after mastectomy. Whether or not I would need a mastectomy had not been decided, but he nevertheless explained my options for reconstruction, which I found to be very depressing. I had hoped that if I did need a mastectomy, I could at least get implants and end up with perky breasts. He said that since there would be no breast tissue, they would have to put the implants under the chest muscle. However, they would not be able to do it immediately because the tissue would tear. They have to first implant a tissue expander. Over a period of 4 to 6 months, the plastic surgeon would inject a salt water solution to fill the expander until the area is stretched enough to accept the implant. At that point the expander would be replaced by the permanent implant or, in some cases, the expander can be left in place as the implant. There can be problems with implants. Scar tissue may form around them and distort their shape, or they can rupture or cause infection. They might not last a lifetime.
The other options for reconstruction are tissue flap procedures, in which tissue is taken either from the abdomen or from the upper back. At first I thought it might be nice to get a tummy tuck as a side benefit. However, the problem is that they can't just take the fat. They have to take skin, blood vessels, and at least one abdominal muscle, which they move from the abdomen to the chest. This missing muscle in the abdomen will not grow back, so there might be muscle weakness or abdominal hernias, and of course there would be scarring.
A newer procedure, called the DIEP flap, takes skin and fat from the abdomen but spares the muscle. The blood vessels that lie beneath or within the abdominal muscle are dissected, and connected to the patient's chest with microsurgery. The risk of abdominal complications such as hernias and bulges is smaller, and there is less postoperative pain. The problem is that the surgery is so complex that few breast surgery centers offer it. In my mind, this would also mean more chance for surgical errors.
The other most common flap procedure takes muscle, skin, and blood vessels from the upper back and tunnels it under the skin to the front of the chest. Although the muscle will be missing from the back, most people don't use those muscles as much as they use abdominal muscles.
Before my appointment with the plastic surgeon, I had looked up some information about reconstruction on the Internet. I read that it is possible to save the patient's own skin and nipple. Otherwise, a false nipple would have to be tattooed on. When I asked about the skin-sparing procedure, the plastic surgeon explained that this was only possible on small, perky breasts, and mine did not fit that description. (I knew that people with large, saggy breasts commonly got breast reduction surgery and that they retained their own skin and nipples, so I asked why the skin and nipples could not also be retained with mastectomy, but I was not able to get a reply that I could understand.)
The only good news was that Medicare is required to pay for reconstruction following mastectomy if the patient elects it. I left the appointment resolved to avoid mastectomy if at all possible.
The procedures described above include all the options for reconstruction that traditional medicine offers. However, there are also some nontraditional treatments. One of them has been publicized by Suzanne Somers. Unhappy with the deformity that her breast surgery had left, and disillusioned with conventional cancer treatment in general, she found Dr. Kotaro Yoshimura, a Japanese surgeon who developed a procedure involving stem-cell breast reconstruction in 2004. She helped launch a clinical trial at Hollywood Presbyterian Medical Center. She was the first patient to participate and she says she is very happy with the result.
Another procedure has been developed by plastic and reconstructive surgeon Roger K. Khouri at the Miami Breast Center. The procedure, called Brava, uses external expanders and liposuctioned micro-fat grafts and is primarily for women who have had a mastectomy or lumpectomy, with or without radiation. Miami Breast Center describes the procedure as a more patient-friendly, minimally invasive breakthrough and a huge leap forward from the traditional flaps, DIEP flaps and implant breast reconstruction procedures, which require major surgery. I don't know anyone who has had this surgery or the type of surgery that Suzanne Somers had, but if I decided on mastectomy with reconstruction, I would definitely explore these options.
Because of all these appointments, and especially because of my group meetings at the Cancer Support Community, I was starting to accept that I would have to face treatment for cancer, but I had another level of denial that lasted longer. Even after my surgery, I was still sending emails telling people that, while my treatment was an enormous hassle, my cancer wasn't really dangerous. I actually believed this, maybe because what we in this culture hear about breast cancer focuses more on the survivors than on those who didn't survive. I personally knew people in both categories, but I only thought about the survivors. I also tended to think of "survivor" as a permanent condition, but no one can ever know how long our survivorship will last. This was the first illness I had ever had that would never be officially cured, even though I'm in remission now.
(Continues…)
Excerpted from "The Thinking Woman's Guide to Breast Cancer"
by .
Copyright © 2017 Janet Maker.
Excerpted by permission of Jane Thomas Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
