You've just been diagnosed with breast cancer! The test results are in and it is true! When you found the lump (either through self-exam, clinical exam or a mammogram) you hoped it wasn't true. When the ultra-sound came back suspicious, you wished it wasn't true. When the biopsy came back positive, you prayed it wasn't true. But it WAS true. You have breast cancer!
The doctor is discussing some of your options. You wish your husband was with you. Maybe you want your mother, your best friend, or your daughter. Perhaps you chose to go to the doctor alone to hear the results. Now you want somebody with you who can really hear what the doctor is saying. Maybe you should have brought a tape recorder. Your head is spinning. You are getting sick to your stomach. What is the doctor saying? What choices do I have? Aren't there "tried and true" ways to take care of this? What does the doctor mean by "stages?" Oh boy, use some of my own body parts (stomach, back, and buttocks) to reconstruct a new breast. I can't stand it. Just tell me what to do. I want to live. I will do it!
October 1996, this was my diagnosis. Only mine was double! That's right. I was diagnosed with simultaneous bilateral breast cancer. The right breast mass was a well-differentiated Grade one invasive tubular carcinoma. The left breast mass was moderately differentiated, Grade two, invasive ductal adenocarcinoma. What was I going to do? What were my options? What was "best?"
This was a very tumultuous time in my life. I had been married only one month. My spouse had lost his first wife to ovarian cancer. Would an earlier diagnosis have affected us? Would I have married him? I did not want him to go through all of "that" again. I was concerned about him as he seemed so overwhelmed. Why again? I can't lose you he kept saying over and over. He went with me everywhere - mammograms, ultrasound and needle biopsy that were done on both breasts and all doctor consultations. I could not have been the easiest person to be around during this time let alone be on a honeymoon with but he never waivered in his support.
In 1996, according to the National Cancer Institute, an estimated 180,000 women heard the words, "You have breast cancer." from their doctor. "More women are getting breast cancer, but no one yet knows all the reasons why. Some of the increases can be traced to better ways of recognizing cancer and detecting cancers in an early stage. The increases also may be the results of changes in the way we live - postponing childbirth, taking replacement hormones and oral contraceptives, eating high-fat foods, or drinking more alcohol." ("Understanding Breast Changes - A Health Guide for All Women" - US Department of Health and Human Services - Public Health Service - National Institutes of Health - National Cancer Institute - PHS Office on Women's Health - NIH Publication No. 97-3536, August 1997). I was just one of many diagnosed with breast cancer that year. However, my diagnosis was simultaneous bilateral making it rather unique.
Your doctor will present you with options. This is where the difficulty comes in. Most of us want to be told what to do. We want the doctor to do what has been proven to work the best. But with breast cancer there are no clear-cut answers. Each option has a positive and negative side to it. You have to do what is best for you! That's right. This may be the most important decision in your life and you need to make an informed one. Don't let anyone tell you what to do. This is your body. Listen to advice. Gather facts. Talk to everyone you need to. Become a partner with your surgeon. Tell the surgeon everything about yourself. This is not your family doctor. The surgeon doesn't know you. And when you are through with your research, tell your surgeon what you want!
My doctor wanted to do a lumpectomy and radiation on the right breast and a mastectomy and breast reconstruction on the left. I said, wait a minute. Why? Is one breast worse than the other? Is the cancer more extensive in the left over the right? Will the long-term results be better? What is my survival rate with a lumpectomy or mastectomy? I only have two breasts and you want to do four procedures. Why? What became clear is my case of simultaneous bilateral breast cancer did not happen very often and radiation was playing a key role. No one had been simultaneously double radiated in our local area. Therefore, lumpectomy and radiation on both breasts was not presented as an option by the surgeon. However, if only one breast had cancer, no matter which one, lumpectomy, lymph node dissection, and radiation would have been the recommended procedure to follow. After many lengthy discussions with my doctor, husband and family, I wanted lumpectomy, lymph node dissection and radiation. And I wanted it done on both breasts! The mass in the right breast was only 0.4 cm in greatest dimension and the mass in the left breast was approximately 1 cm. in greatest dimension. Surely it could be done my way. I started gathering information. My surgeon was supportive, explaining everything in great detail, answering every question and recommending all kinds of places where I could get additional information. We also had an extensive conversation regarding "staging" which played an important role in my eventual choice.
After a great deal of reading, research, and soul-searching I decided to go to two local hospitals where cancer research was in high gear - University of California, Davis, and University of California, San Francisco. Since simultaneous bilateral breast cancer is not that common, I volunteered for any program and/or tests they were running. I spoke with cancer experts at each facility and very different recommendations were made to me. The surgical oncologist at Davis said he would recommend a double mastectomy and lymph node dissection. However, University of California, San Francisco said they would double radiate me following bilateral lumpectomies and lymph node dissection. Finally, somebody who agreed with me. It could be, as Frank Sinatra put it, MY WAY! But my quest had just begun . . .
I returned home and had a meeting with my radiation oncologist, a graduate of University of California, San Francisco. Since I could be double radiated at UC, San Francisco, I asked if she would consider doing my radiation therapy closer to home. She said she would look into it and let me know. In the meantime, I prepared for surgery. No matter what the decision would be concerning radiation, I knew I wanted the most conservative method performed. I am not one for reconstruction, as I did not want any foreign substances in my body. I also was not a candidate for using my own body parts. I am overweight, have stretch marks from pregnancy and do not tolerate surgery well. Using your own body parts for reconstruction is extensive surgery and don't forget, I would need it on both sides. No way. It's not for me. While losing some of my tummy sounded appealing, a new breast covered in stretch marks did not.
The call came and the radiation oncologist said she would double radiate me at the medical center only 40 minutes from home. Great! This was wonderful for me and outstanding for the women who would follow. Now my doctor and I started to work out the details. Since we did not know how I would respond to this much radiation, the oncologist and medical center staff went out of their way to offer any special services I might need. I felt I could either drive or be driven to a local hospital only 10 minutes from my home. The medical center then offered to provide a shuttle to pick me up there and drive me the additional 35 minutes to the medical center. Following treatment, the driving pattern was reversed. If any problems arose, I would be at the local hospital. This was the first time the shuttle service operated in this manner and the service is now offered to others who live just outside the "normal" shuttle area. Okay. Now I was set for surgery!
I was told to be at the medical center at 8 am on Monday morning. However, first I was to go by the mammography center and have wires inserted into the tumors so the surgeon can find them during surgery. What? Are they kidding? Yes, I had needle localization on both breasts. This technique was used to mark the location of the tumors that show up on a mammogram, but are too small to be felt. Using your mammogram as a guide, a radiologist aims a needle at the tumors. Another mammogram confirms that the needle is close by. Then a flexible wire is inserted and used by your surgeon as a guide to the tumors. It was a chilly December morning and the women in the office put a blanket over my shoulders, following the procedure, to keep me warm on the way to the medical center. I could not put a jacket on with both breasts involved! I had my hands folded back into my armpits on both sides and was supporting the blanket with my shoulders. I started laughing and we all agreed I looked like Superman or Wonder Woman with my new "cape." What a sight!. I also wanted to know if I looked like I could fly with my cape, then could I fly away and leave everything that lay ahead - far, far behind?
Surgery went well. The good news was the surgeon did not have to put in drains as we had hoped. My husband was delighted, as he did not think he could clean and/or change them daily. The alternative for me was having my breasts aspirated as needed. This was easy and again I was confident my husband and I had made the right decision. I started on the road to recovery. I would go to the doctor every few days (my mother-in-law drove me and got to play nurse) and he would drain my breasts. I did get a blood clot in my left breast that had to be aspirated and then an infection on the same side. This delayed the start of radiation approximately two weeks.
In the meantime, something new was going on. My left arm was swollen and the right arms was starting to swell. I spoke with my surgeon. He said it appeared I was developing lymphedema (swelling in the arms). He had mentioned this as a possibility prior to surgery but it definitely was not a top priority on my list at that time. It was suddenly moving to the top of my list very fast! I was getting ready to start radiation and the doctor told me not to have any blood pressure checks or blood draws taken from either of my arms. I am suppose to have them taken on my legs. One more challenge . . .and why do the lymph nodes have to be removed? Can't we speed up the testing that would make it unnecessary?
I started seven weeks of radiation. Previously my condition had been evaluated, I signed a consent form and had my treatment planned. The first step before external radiation was a "simulation procedure." This procedure "pinpoints the exact spot on your body where the ray will be aimed. It determines the size and location of the area to be treated. This test takes up to two hours" for most woman but with bilateral treatment, mine took nearly four. During this procedure your skin is usually marked with ink or dye to show where the rays must be aimed. Some women are tattooed. You are asked not to wash off the marks -- they are needed to make sure the correct area is treated each time. Once again I asked questions. Did I have to be marked? Because of being the first to be double radiated here, weren't they going to be checking and marking daily to ensure accuracy? The answer was yes. Therefore, I asked them to mark me daily based on our first simulation. This worked well. Very well in fact. My husband and the radiation therapist got in the habit of sending little messages back and forth on my breasts - smiley faces, large "hi", etc. This gave us all of us a laugh and additional emotional release during this time. It's amazing how important these little things become to you.
Remember when you asked your doctor all of your questions? Hopefully, one of those questions was "What were the results of my estrogen and progesterone tests?" This is one of the determining factors as to whether or not your doctor will prescribe adjuvant hormone therapy. I was stage 1 with a positive test result and a negative test result. It was recommended I take Nolvadex (tamoxifen). There can be some serious side effects to taking tamoxifen. One is cancer of the uterus. I had a hysterectomy at age 32 so I did not have to worry about this one. Blood clots, hot flashes, nausea, and vomiting are those most often reported. I opted to take it. I believe that a recurrence of breast cancer would be harder for me to accept than any of the side effects from the drug. Talk to your doctor. Remember, ask questions. It is your body. It is your life. Do it your way. It must be right for you!
I am now celebrating four years as a cancer survivor. I have graduated to having an annual mammogram. So far so good. The radiation went well and I didn't have much problem with the tamoxifen for the first two and one-half years. Even with some challenges now, I still believe I have done the right thing in selecting to use it. At least it provides me with someway to fight the cancer and besides, I only have one more year. However, my biggest battle is just starting - LYMPHEDEMA. I have lymphedema from the tips of my fingers to the top of my shoulders in both arms.
When my local doctors told me they knew very little about lymphedema, they recommended I go to Stanford Medical Center. In August 1997, just nine months after my cancer surgery, my diagnosis at Stanford was bilateral arm lymphedema. The doctors there recommended I learn how to do manual lymphatic drainage and compression wrap. This would mean staying approximately three weeks in the Bay Area and I was moving to Idaho. However, the Stanford doctors recognized manual lymphatic drainage and compression wrap presented a challenge for me since the lymphedema was in both arms and I would probably be unable to do it to myself. I returned home, spoke with my doctors and family and opted for a pneumatic pump. I did get the manual lymphatic drainage video and decided, without someone else to perform my massage, I would not be able to do it for myself! I faithfully used the pump and protected my arms and hands!. It is extremely important, if you get any swelling, you get an immediate diagnosis. If you local doctor is not familiar with lymphedema, find one who is. If you have lymphedema, you must protect your arms and hands!!!)
After ten months of using the pump, my arms were painful and I could hardly lift them. I was no longer able to wear most of my blouses and no rings, bracelets or wristwatches at all. I knew something had to be done when one of the doctors told me that I was losing circulation in my left arm and may lost the arm! I went out on the web (internet) and contacted the National Lymphedema Network. They put me in touch with St. Luke's/Elks Rehabilitation Hospital in Boise, Idaho. (I had moved from California to Idaho in August, 1997). I promptly enrolled in a program whereby I would have manual lymphatic drainage and compression wrap for 15 treatments. Here I was again with both arms incapacitated and not able to attend to even daily hygiene. But it was worth it. Manual lymphatic drainage worked for me and there are centers throughout the United States where it can work for you. My arms are considerably smaller and my skin is softer. And most important, my circulation is good in my left arm. My husband took massage lessons for four days with the therapist in Boise. We will have to continue this treatment daily at home for the rest of my life. BUT I HAVE A LIFE!
And my life will be dedicated to helping others. I work with those diagnosed with breast cancer here in our rural section of Idaho. I have recently been certified as a "Reach to Recovery" volunteer through the American Cancer Society. In addition, I offer resources and information to all the women here regarding women's health issues as well as cancer speaking at craft fairs, church groups and our County Fair. I have been joined by a wonderful cosmetologist who is now offering the "Look Good, Feel Better" program here also. We recently were able to have a local patient receive her chemotherapy here and I stayed with her. We are making progress here one day at a time! I also volunteer at Hospice of Salmon Valley and at our local hospital. They are outstanding groups and do so much in our community. A couple of my latest projects include a soy study and menopause with John Hopkins (yes, over the internet) and now I am going to be sending a blood sample to a DNA group that is doing a study on breast cancer.
Do I fear a recurrence? You bet I do! Some women are able to move on following breast cancer surgery. Some can't. Some think about it every day. Those of us who have the misfortune of having lymphedema following our breast cancer, are reminded of the cancer every minute of every day. We have constant pain in our arms, receive daily massages to be able to move our limbs and at night we are wrapped like a mummy. And each and every day we wear compression sleeves. We can't forget the cancer for even a minute. This makes the fear of a recurrence ever present. Sometimes I ask God why both breasts and then arms at the same time. God knows me well. If I had breast cancer and lymphedema on only one side, I may not have had the strength to go on and chosen to repeat everything all over again on the other side if I'd had a recurrence.
My life has changed dramatically. I have learned more about myself. I have the strength to speak out about what has happened in my life. I work to encourage all women recently diagnosed with breast cancer to ask questions and do what is right for them (and don't forget to ask if removing the lymph nodes is necessary!) For me, it had to be done MY WAY and that included not only my treatments but the way in which I live my life. I believe in staying busy and keeping my life full. There is so much to enjoy. It helps me to focus on things other than myself. I have a daughter and step-daughter who were married within six days of each other only two months after I finished radiation treatment. I told both of them nothing was to be put on hold and we would and could make both weddings happen. And we succeeded! I had flower girl dresses brought to me in Radiation, carried pillows and baskets back and forth daily during my treatments as I worked on them and favors, - 100's of them, were done in the shuttle van. We only have one life to live. Let's live it to the fullest. Even life's simple things now give me such enormous pleasure. We live in a small valley in Idaho where the trout splash and the ducks "surf" the river just 30 feet from the house. Mountains with deer, elk and antelope are within sight. And our mountains, snow-capped and glorious, remind me of God's generosity. How much better can it be? In addition to staying busy and taking time to smell the flowers, I believe you need to laugh along the way. It really helps. Try to visualize me in my cape or having messages written on my breasts if it helps. All of us, the cancer survivors, have shown some form of courage thus far and some of us have tried to clear the path for those still to come.