Ginny: Inflammatory breast cancer

Listen With 22 minutes, 13 seconds.

Username: gmibcrf

Go to gmibcrf's personal Web page

Hi. My name is Ginny. I'm a 48-year-old nurse who recently moved to Indiana from Virginia. I'm married and have one daughter and two adorable granddaughters that I miss greatly now, since I moved so far away. Like most cancer survivors, I think my life is divided into "before and after" cancer. The cancer life is never quite the same as it was before. My dividing line is March 18, 1994. Prior to that day I had never heard of inflammatory breast cancer. In fact, knew very little about breast cancer, other than the need to do monthly breast self exams, and if I found a lump, to get it checked out. But seven months before that date in March, in early August of 93, I became aware of changes in my right breast. I had a lump or kind of a thickening that suddenly appeared. Being a nurse, I knew I had to have this checked out. My doctor ordered a mammogram and it came back clear, so we thought it was just hormonal changes. At that time, I was 40, had no family history of breast cancer, and I liked that answer, that it wasn't any big deal, don't worry about it. But, over the next few months, the breast seemed to get larger, the skin began looking a little odd, and I had pain. But I've always heard, "If it hurts, it's not cancer". So I tried not to think about it.

Dealing with the diagnosis

By Christmas time, it was becoming very annoying. I tried to get back with the doctor, but weather or family circumstances kept interrupting things. I didn't get back in until March. When the doctor looked at it, he decided maybe I ought to see a surgeon. He still thought it was a cyst and just hormonally sensitive, but he wanted a surgeon to look at it and probably do the aspiration. Fortunately, the surgeon could see me the same week. He decided to do a needle biopsy to determine if it was a cyst or not. We decided we would meet at the hospital the next day, following an ultrasound to check my gall bladder for stones. I was also having gall bladder problems. As I waited in a room for him to come see me, I knew the moment he walked into the room, something was wrong. He had such a grave expression, came over, took my hand and sat down. And I asked, "Well, do I have gallstones?" He said that was the least of my problems, that I had a very aggressive form of breast cancer and needed to start treatment immediately. He took me down a back stairway into the cancer treatment center of our hospital, introduced me to the oncologist, and as he did this, he said, "This is the woman I talked to you about last night." Immediately my heart sank further. They'd already been discussing me. This did not sound good. After a brief examination by the oncologist, I learned more about this aggressive breast cancer, called inflammatory breast cancer. My prognosis was 12 to 18 months. They wanted to start chemo right then. I couldn't believe it. I was alone. I wasn't expecting news like this so I had told my husband, "You don't need to come along. I'm just going to be planning surgery."

I looked at the oncologist and said, "How can I call my husband and say, come get me, I've just had chemotherapy." I can't do that. It was Friday around noontime. I said, "Give me the weekend. I'll be glad to start chemo on Monday, but I need time to think about this and to tell my family and to prepare. So I made an appointment to start chemotherapy on Monday afternoon and I went back to work. I tried to focus on my work, tried to act like everything was just fine. I didn't want people wondering what was going on. But through my mind as I did my duties were thoughts of, am I going to die? Right away? How awful is this chemotherapy going to be? Can I do this? I think I went through all five stages of death and dying that afternoon. Finally, before the end of the day, I went in to tell the psychiatrist I was working with about my diagnosis and to ask for Monday afternoon off. When I told him he got tears in his eyes and got very emotional, and I said, "Don't do that. I'm just trying to hold things together now until I get home. Please, I don't want to start to break down now." He was so supportive and caring. It really made my afternoon a lot better.

Telling family and friends

But on the drive home that day, I kept thinking, "How am I going to tell my husband?" I tried to rehearse what I would say, how I would walk in the door, get some news of the day and just casually mention, "Oh, by the way--" When I got home, the sky was getting dark and cloudy and it was starting to sprinkle and storm was coming. But it couldn't match the storm that happened as I walked in the door. My rehearsed story went out the window, and I blurted out, "They told me I have inflammatory breast cancer and I'll probably die in a year." Well, so much for my rehearsed speech. As we sat on the couch, in each other's arms, crying, the rain outside matched the rain inside. Finally, our tears spent, we sat quietly, and one of us noticed out the window, a huge rainbow. Suddenly we both felt like, maybe it was going to be all right. That we'd get through this, no matter what the outcome.

That weekend we shared the news with family and friends, mostly by phone since most of our family didn't live close by. My husband was so good to do that. He made the calls. What an awful job, especially since it was his mother and sister's birthday celebration that got interrupted by his call. I felt so badly for giving them that kind of news while they're trying to celebrate such happy times, and knowing that they were a couple states away and wanted to be there to comfort us. That's part of what you do when you're dealing with cancer, is worry about how everyone around you is handling what's happening. Not only are you concerned about yourself, but you want to take care of them and wonder of they're handling what's going on.

Being proactive

I also got my waist-length hair cut that weekend in preparation for losing my hair in chemo. The doctor had said it would be easier on my scalp and maybe a little less traumatic. So when I went back to work on Monday, my coworkers were absolutely shocked to see that my hair was no longer long and that I had this short new hairdo, but it was the perfect opportunity to tell them, "Don't get used to it, I'm going to lose it. I start chemotherapy today." I knew I was going to need their help and understanding in the days ahead, so I wanted to be open about what was happening. Let them know that even though I'd been diagnosed with cancer, I was going to still be at work and I was going to try to live life as usual and normal as I could.

Chemo wasn't easy or pleasant, but it was manageable. I was given Cytoxin, Adriamacin, and 5FU. My tumor didn't show the response that they had hoped after the first treatment, so my treatments were increased by 10% each time, and the time between treatments was shortened. I then was told I would have three sessions of chemotherapy, surgery, and then three more sessions of chemotherapy. But when there was little response after three sessions of chemotherapy, they decided to do all six prior to my surgery. One thing you learn about dealing with cancer is that it doesn't follow the schedule. Things change, and that's hard for a person like me, who likes to be in control, and have a list, and have everything planned out.

Counting the blessings

I continued working throughout chemo, sometimes needing to take a rest. My coworkers were wonderful. They even bought me humorous videos to watch on the weekends, brought food, did all kinds of things to make my life easier. Carried my charts for me, and things like that. I was working as an outpatient mental health nurse at the time, and believe me, they learned to take care of MY mental health really well. My husband did everything at home except cook. He hates to cook. Since I love it, I would put what little energy I had into doing cooking. So I did that, and he would take care of everything else. What a blessing. I really did appreciate his support. Our daughter at that point had just been married a short time and was out on her own, and that was kind of helpful since she wasn't home to be able to see me at my worst. I could try to pull myself together when she was around visiting.

I don't remember asking "why me?" on that day of diagnosis. Maybe once, I did, but that quickly changed to "why NOT me?" I remember telling a group of coworkers one day while we were standing and talking together--people were asking how I was--I said, "Okay, there's 8 of us standing here. You know the rest of you are safe now. I've been the one in eight to be diagnosed with breast cancer." I don't think they got the humor I intended. I learned humor is really important. I remember my first shower after my mastectomy. As I dried myself off, I caught a glimpse in the mirror; bald, pale, one-breasted, big gash across my chest, and I began to laugh at the caricature I've become. I was so disappointed when I lost all my hair and found that my head was not nice and smooth and round like so many bald heads I'd seen. It was kind of lumpy and bumpy and even kind of had a point on the top. That in itself was pretty comical. And really, being bald wasn't that big a deal. I know it is for a lot of folks, and I need to be understanding about that, but I'd be bald the rest of my life if that's what it took to stay alive. I now have hair again, but I remember very, very well what it was like to not have hair. In fact, I even have pictures so I can document that important time in my life. I realized that my shell had changed, but I was alive, and that was something to be joyous about.

Dealing with the treatment

My mastectomy followed chemo, which I know is not typical with other breast cancers. Normally surgery is done first. But inflammatory is such an aggressive, fast growing cancer that chemotherapy is usually done first to try and slow down the tumor growth and spread. But following the mastectomy, I got more bad news. 11 of my lymph nodes were positive for cancer, and I had more tumors than they thought, and they even found an additional type of cancer. Not only did I have the inflammatory breast cancer and invasive ductal carcinoma, I had mucinous carcinoma.

Well, I went on to radiation that lasted for six weeks. I went early in the morning so I could get on to work and continue seeing my patients as usual. It was tiring and a little hard on my skin, but nothing like chemotherapy had been. As I ticked off each day on my calendar, knowing that the radiation was end of treatment, I felt a sense of relief but a growing sense of fear. When treatment finished, there was a feeling of "What now? What do I do?" For so many months, my life had revolved around the doctor appointments, tests, things like that. How was I going to get along without "doing" anything? Would it come back? How was I to know? I've learned that you continue to live with that question forever. All survivors do. So far I've been blessed and it hasn't returned. I've had lots of scares, but so far, no recurrences. But each ache and pain makes you wonder. I know all survivors face this. I don't hear the word "remission" when I see the doctors. What I'm told is "they see no evidence of disease." Or NED. A friend I've learned to know in the past couple years uses that term in a little different way. She says NED stands for "No Expiration Date". I like that.

Seeking companionship and support helps

When I finished treatment, I felt the need to be with other survivors. I'd gotten to know a woman during my treatment who was also dealing with breast cancer, and found that it was so helpful talking to her. She could understand things better than others could when I talked about some of my fears and concerns. So she and I and another woman we got to know decided to start a support group. We realized that there was so much we could learn and share with one another, that we wanted to extend that to other folks that were dealing with breast cancer. That group is still meeting. It started in June of 1995. They meet twice a month, called "Best Friends", and that group has just been a wonderful, wonderful experience for me and I know for the folks who participate as well. They've weathered many storms, two members have died, and that's been very traumatic, but it's also been a wonderful experience to get to minister to someone else, and to know that death is not the awful thing that we sometimes think it is. It can really be a peaceful, just good experience. And that took a lot of fear away for a lot of us.

I encourage other people dealing with breast cancer to find a support group. It may take a while to find the right one, but to find one that allows them to relax, talk about their experience, and gain hope and help. I think women, in particular, try to pretend everything is okay when they're home with their families and with their friends, and they don't talk about how they're feeling. But they need a place where it's safe to talk about those fears, those concerns, to just let it out, so that they can go back to acting like everything is normal, and not frightening their children and those around them. There needs to be a safe place to be able to do that. And the support group can really fill that void, and you end up with friends that have an intensity of friendship unlike things that you've experienced before. It's almost an instant bond. And it really helps to make something more normal out of something that doesn't feel very normal.

My faith has played an important role in my entire life, not just in my cancer. But I asked to be anointed just after my first chemotherapy, and felt that that gave me such peace that I would be able to deal with what was ahead. I didn't ask for specific healing of my body, though that would have been a great thing, too, but for the ability to accept whatever was ahead and to deal with it. My husband has been a great source of comfort and support. He never missed a chemotherapy appointment or doctor appointment. He's been so loving and accepting of me from the start, and continues to be, and I truly feel blessed about that. I know that's not everyone's experience. The cancer experience has changed me. I jokingly say I didn't know that there was a connection between the breast and the tongue, because when my breast was removed, it loosened my tongue! I've become quite an advocate for breast cancer education. I've done public speaking, even done TV and radio spots, and now work with the inflammatory breast cancer research foundation. I wouldn't have dreamed of doing such things before the cancer. I was basically a pretty quiet and shy person. I wouldn't have done an interview like this for anything! It would have been too frightening. So you can see breast cancer has been perhaps a good thing for me. I think it has allowed me to be the real person that I was but maybe was afraid to be.

Life after cancer

Inflammatory breast cancer is such an aggressive, deadly disease, and almost no one has heard of it. Many doctors don't even know about it or have never even seen a case. The Inflammatory Breast Cancer Research Foundation wants to educate the public and medical professionals about the signs and symptoms of Inflammatory breast cancer and work through research to find the cause and cure for it. When I was diagnosed in 1994, the survival rate was very poor. The only statistics I could find were, I might live 12 to 18 months, with aggressive treatment. Now, it's exciting to say that there's a forty percent survival rate at five years, and even those statistics are old. I'm a seven year survivor, which means I've REALLY beat the odds. So I want to give people hope that they can live beyond breast cancer. I'd like to tell you, too, that there IS life after breast cancer. After any cancer. It's your choice. At the time of my diagnosis, I was a licensed practical nurse. I had started a registered nurse program in 1976, but due to problems with my daughter's health, had to drop out. But I always wanted to go back and finish that. So in 1995, after finishing my cancer treatment, since I was still alive and hoped I would continue to be, I decided I should go for it.

So, with my husband's encouragement, I went back to school and got an Associate Degree and took my state boards and became an R.N. I continued working full time during that time, as I needed my health insurance desperately, and was so excited when I passed those state boards and became a registered nurse. But then, as time passed and I was still alive and doing well, my REAL dream had been to have my bachelor's degree in nursing. So, I thought, what's stopping me? So again, I went back to school, and with a lot of help from my husband and understanding at work, I went on and in 1999, I graduated with a bachelor's degree in nursing. How exciting to think that I've been able to accomplish these two goals after going through such an experience of cancer treatment. My husband jokingly says that cancer lit a fire under me and got me going so that I would get these things done. Which, perhaps, is true. It's important, once you've had a cancer diagnosis, to continue to look to the future, to set goals, to look ahead, even when it doesn't seem like it's very practical to do so. Life can't stop. You need to keep on going, no matter what is happening to you physically. You need to keep looking ahead. I think. That's been an important thing for me.

Probably the most important lesson I've learned through cancer is that I can't control what happens to me. As I said before, I'm a person who likes to be in control. I make lists. I plan ahead. But cancer changes that. You realize that there's very little you can control. But the one thing I could control was my response to what was happening. The cancer could try to stop me, but I could choose how I was going to respond. Even when somebody said something that they don't intend to be hurtful, but when you're dealing with cancer, sometimes people just don't think carefully about what they say. You can choose how to respond to that, and sometimes it's just best to laugh and go on. I've learned that it's real important to live with cancer. It's a choice that I can make each day. I would encourage you, if you'd like to know more about inflammatory breast cancer, that you can call 1-877-STOPIBC, which is 786-7422, or check out our website at www.ibcresearch.org, or www.breastcancerorg.net.

Help |  About CSN  | Legal & Privacy Information