THE STORY OF A BREAST CANCER SURVIVOR AND HIS FAMILY

by Barbara F. Stevens

Discovery

Ben: One of my nipples had been itching for about a month. I had been using cortisone cream which seemed to help. My nipple was kind of looking downwards. Like most guys I didn’t think much about it. One night I forgot to use the cream and was awakened in the middle of the night because it itched so badly. While scratching, I felt a lump near my nipple.

The next day I was playing golf with a doctor friend and mentioned the lump. He said it was rare that men got breast cancer but I should have it checked. When I got home I told my wife, Sue, about the lump and made a doctor’s appointment. After being examined, I was told it was probably an infected cyst and that I should soak it in hot salt water for a week. That helped the itching, but the lump remained. It was then recommended that I see a surgeon.

Sue, his wife: When Ben discovered the lump we didn’t really think much about it because like most people we just naturally assumed that men do not get breast cancer. Silly us!

Ben: The surgeon was a friend. Both he and his associate said, “It doesn’t look like there is any big concern, but we really should take it out.” They weren’t worried, so Sue and I weren’t. Three weeks later, on a Friday, I had a biopsy. My surgeon told me later that as soon as he cut into it he knew by the color that it was cancer.

Sue, his wife: The surgeon told me that men rarely get breast cancer. We never thought it would be cancer. It couldn’t happen to us or to anyone we love. I was shocked when he said, “I’m sorry Sue, he has breast cancer.” I probably would have been more prepared if the diagnosis had been mine. I think I was in denial when I called the children to tell them.

Ed, his son: We’re a family business. Dad walked into my office one day looking concerned and said, “I found a lump. What do you think about it?” He opened his shirt, and I felt this hard lump by his nipple. I suggested he get it checked out, but I knew it wasn’t breast cancer because men do not get breast cancer. He was worried, but the family downplayed it a bit.

I wasn’t at the biopsy because I had something really important to do. My wife and I had made the difficult decision to put one of our dogs to sleep, and the house vet was coming over to pick him up. I loved my dog and needed to say good-bye.

Ben: I was already scheduled for a single modified radical mastectomy by the time I came out of anesthesia from the biopsy. I was not given a choice.

Because everything happened so quickly, I never had time to worry. My only concern was whether I would need chemotherapy or radiation. The day after my mastectomy, on the way home from the hospital, I had Sue take me to the plant, drains and all. They couldn’t keep me down. For six months after surgery, fluid would build up in my breast area. The doctor had to keep aspirating the fluid with a needle to drain it. Because it was numb it didn’t hurt, although it was uncomfortable.

I have talked with a number of women in their thirties and forties who have had breast cancer. Many have had lumpectomies and some have had recurrences. I can understand their reasons for doing a lumpectomy, but I think if you get breast cancer you should let them take your breast.

Sue, his wife: Immediately after the biopsy our surgeon asked, “What do you think?” I said, “I think we should schedule him for surgery as soon as possible. I don’t know how he is going to handle this. He’s a man who has never been in a hospital or under anesthesia of any sort. It’s unfortunate we can’t do this today, but let’s do it as soon as possible.” A lumpectomy was never recommended. I don’t know whether they do anything other than mastectomies for men.

The weekend before his surgery Ben and I operated on automatic pilot. Our attention was focused on the fact that he was having surgery. Not what the surgery was for.

Ed, his son: My wife and I were sitting at our kitchen table very upset over having put our dog to sleep. We assumed it was the veterinarian when the telephone rang. It was my mom saying, “It’s a bad day.” I said, “Yeah, it really is a bad day. The vet just took our dog.” Her words weren’t registering even though I knew my dad had gone in for a biopsy. Then she said, “Your dad has cancer.” It never dawned on me that my dad, the biggest, strongest person I had ever known, who was impervious to everything, could possibly have breast cancer. Men do not get breast cancer! Within a few seconds our lives and priorities changed. I did not think about my dog for another week. I love animals and I love dogs, but I would trade one thousand dogs for my father.

When I talked to my dad on the telephone I cried. It’s not something I do all the time, but I realize it’s healthy and I certainly felt better after having done it. That weekend, before surgery, all of us kids went over to our parents’. It was kind of uncomfortable because no one really knew what we could do to help. It’s as if you are there for them, but you don’t know exactly what it is that they need. I was feeling a little funny about how to help. I just kept saying, “Everything is going to be okay, don’t worry.”

Ben: Eight years prior to being diagnosed I was driving to work in my convertible when an overhead electrical transformer shattered and showered me with PCPs, a coolant now discontinued in most transformers across the country. When I called the electric company to report what had occurred, they immediately sent a team down to clean up the residue. They washed my car, and suggested I immediately take a shower, all the while assuring me I had nothing to worry about. But the next day, men in white protective gear were picking up the earth around the blown transformer. It wasn’t until later that I learned there is a link between PCPs and breast cancer.

My tumor was 1 cm. It takes about eight years to grow a tumor that size. Coincidence? Five years prior to that, I was two hundred miles from Chernobyl when the nuclear plant blew. I think the PCPs are a much more likely reason I got breast cancer.

Sue, his wife: It helped talking to friends of ours who have had cancer because they have been through the process. Their spouses also understood and called me specifically to see how I was doing. I don’t think you can give the same kind of support unless you’ve personally experienced it. Our family also was very supportive. I say that if you don’t have a good support network, get help from a psychiatrist or psychologist. Because you cannot do it alone.

Although Ben has always been supportive, since his cancer he has become emotionally supportive. Before he got sick his support was more the good-ol’-buddy type of thing. Now he is so loving and caring, and you know he’s making a difference. He will call people with cancer and talk with them. He will say things like, “I’ve been there. I’ve had this worry. I know where you’re coming from.” Our relationship today is so much richer because of his attitude change.

Ed, his son: I was glad I worked with Dad because it gave me the opportunity to see him every day. Being a close family, we had a great support network. Only my close friends asked how I was doing. That was okay because, at the time, I felt it more important for my dad to be nurtured than me.

Bob, his friend: Sue took really good care of Ben. She sheltered, encouraged and prodded him. Being close family friends, they had my support as well as my wife’s.

When someone has a serious illness the best thing you can do is to lend your support without too many strings. Don’t expect anything and give them room. I get angry when an employer treats a sick person like a sick person. If a person can only work thirty minutes a day, let them work thirty minutes a day. Those thirty minutes are important to them because it means they haven’t given up. The person who is sick should be able to say, “Let me tell you when I’m sick or when I’m not able to work.” Ben knew what he was capable of doing.

Ben: I did chemotherapy because two of the fifteen lymph nodes they removed were positive. I interviewed oncologists, and one really caught my attention when he said if I were to have a recurrence, castration was a consideration. That supposedly would help stop hormone production. I had a monthly injection of Adriamycin and 5-FU, followed by two weeks of Cytoxan pills. Even today, five years after my diagnosis, there is no difference in treatment between men and women as far as I know.

Sue was with me for all my treatments. I was fine after my first injection, but went a little crazy after my second. On the drive home I felt as though I were jumping out of my skin. I could not stand being confined and had to restrain myself from jumping out of the car and running . . . while we were going sixty miles per hour. What a funny feeling. I guess the doctor put a tranquilizer in my IV after that because I never experienced that feeling again.

I worked the entire time. But I was tired and lacked energy, so I put an air mattress in my office and napped when I had to. I lost all my strength, almost as if my muscles had deteriorated. I was so weak I had difficulty taking tops off containers. Many times my car would stay at work because I did not have the energy to drive it home. I also did not have the energy for golf the first two weeks after treatment, and I am an avid golfer. Even though memory loss was a problem, this period was very productive for me and my company. I’m an inventor of business machines, and we got six to eight new patents during this time. My memory returned within a year of finishing chemotherapy.

I could not bring myself to shave the fringe of remaining hair. Other than the fringe, all my body hair fell out and I only had to shave every two to three weeks. I gained about twenty-five pounds because I was constantly eating to get rid of that funny taste and dryness in my mouth. It wasn’t until my last treatment that the oncology staff told me that lemon sourballs help remove that awful taste. I did not drink alcohol because even one beer gave me a three-day hangover.

Finishing chemotherapy is what I imagine it must be like to be released from jail. I couldn’t wait, and it felt like the world was taken off my shoulders. I thought twice about taking that last Cytoxan pill. I was going to save it . . . but I did take it. No one suggested tamoxifen.

Sue, his wife: Watching the people in the reception room at an oncologist’s office is scary. They looked old and as if they were dying. It worried me and I thought, Is this it? Is this what it’s like? We interviewed oncologists and rejected one because of the clutter in his office. If his office was cluttered I wondered what happened to the blood samples they took. What our minds can do to us! We also changed oncologists after the first treatment because we wanted someone local, not someone two hours away.

Out of a whole month, Ben had one week, at the end of the month, when he felt even halfway normal. That was a tough week because you knew Monday, when he would start the cycle all over again, was right around the corner. I tried so hard to let him do things for himself because chemotherapy is so imprisoning. It’s “the ruler, king of the hill” and calls the shots. It hurt to see such a vibrant, strong person down. And you couldn’t do anything to help. His concentration was totally destroyed. He could not pull up information like before, and he was so tired. Because his reflexes and coordination were off and he was lurchy, it was very scary when he drove. He would have had difficulty touching a finger to his nose had a cop pulled him over. When he drove, he had this sheepish, little boy look on his face like, “I know I shouldn’t have driven but . . .” Even his eyesight changed. You live in a crisis mode but you focus on the fact that it will end.

Ed, his son: Even though I put on an optimistic front I was worried sick about my dad. He looked like hell, and I was afraid he would die. My sister would tiptoe down the hall at the office so she would not disturb Dad while he was napping. Dad always kept a small container of cranberry juice in his office to help rid him of the metallic taste in his mouth. Either an employee or family member would always check, unasked, to make sure it was full. You did the little things, just to show you cared. It becomes a part of normal life.

Bob, his friend: Ben had good days and bad days. He slept on the bad days. But he kept up his sense of humor. Like the time his doctor told him he wasn’t sure whether or not Ben’s hair would grow back curly. Ben was laughing when he said, “I can tell you it’s not. I have been getting it permed for years.” His doctor cracked up.

Ben: I have a male friend who is four to five years younger than me who was also diagnosed with breast cancer. When he heard about me, he came to my plant and pulled up his shirt to show me his scar. We were a perfect pair. Like me, he is fine today.

I intentionally bring up the fact that I have had a mastectomy when I meet new people. I do it to get across to guys in particular that they can get breast cancer and that they need to check themselves. When a TV station asked to interview me about having breast cancer, I agreed. I felt it was important that men know their risk. It felt really good being an advocate.

I believe if a woman wants to be reconstructed, she should. It was suggested I have a nipple tattooed. But after giving it some thought I decided, “Enough is enough. Let’s leave it as it is.” Had I known at the time of my surgery what I know today, I would have had both breasts removed. But no one suggested it. And I do not want another surgery.

I believe that because breast cancer is still viewed as a “woman’s disease,” men have not given enough money for breast cancer research. Funds have been short for years. Yet men will spend a lot of money on other things, like prostate cancer research. They’re going crazy on AIDS research, yet breast cancer kills more people than AIDS. They should be spending more money on breast cancer than on AIDS. Maybe we will get more funding.

Sue, his wife: I do not think psychologically that breasts are as important to men as they are to women. Ben said to me after his treatment was complete, “I will probably never run around shirtless again.” This was a man who would, before surgery, walk around nude with the windows wide open. A man who would be completely comfortable at a nudist colony. Ben is vain to a certain extent, and I wondered if he was feeling the loss of a breast or the fact that he had a 10-inch disfiguring scar on his chest. His turning point occurred six months later when he exposed himself . . . to another man, our gardener. Ben told me later, “It was really strange. I watched him looking at me. His eyes wandered down, the eyes came back up. I knew he was thinking, “That can’t be what I think it is.’” From that moment on Ben accepted his mastectomy. It was like he had never lost anything and he can now kid about it. Except when the media neglects to mention the fact that men can get breast cancer.

Ben is great with our female friends. They want to see what a mastectomy looks like because it’s a reality for them. We want to know what it looks like in the event it ever happens to us. Women are much more hesitant to show other women, other than maybe a best friend. But Ben has no hesitation and just whips off his shirt. I think it’s wonderful that he does that. His scar isn’t bad. I think the anticipation of what it looks like is worse than it is.

A friend of mine lost her mother and sister to breast cancer when they were both in their mid forties. Even though my friend did not have breast cancer she elected to have a prophylactic bilateral mastectomy (preventive removal of both breasts) because as she told me, “I don’t think I want that to happen to me and all indications are that it could. I’m going to take charge of the situation before it ruins my life.” She decided not to wait until she was forced to make a decision, when she is at the crossroads. Ben and I have discussed what would happen if I were diagnosed with breast cancer. He’s all for my having a mastectomy. It’s a personal choice, and I truly believe that today I agree with him. But the reality is, you never know how you’ll react until it’s you.

Ed, his son: Dad’s got a strong self-image, and I don’t think he’s concerned with having only one breast. I’ve seen his scar. Who hasn’t? If a perfect stranger asks how he is he’ll say, “Not bad for a guy with only one boob.” Sometimes they’ll bite and ask what he means. He wants the world to know that men can get breast cancer.

About a year after Dad’s diagnosis, Joe Garagiola hosted The Today Show. They were doing a week-long series on breast cancer. A guest started to talk about the fact that men get breast cancer and Joe cut him off to go to commercial break. Dad reacted like a tornado and got him on the telephone. On the show the next day Joe said, “I had some interesting calls yesterday, especially from one of my old friends in Arizona. I’ve got to tell you . . . men get breast cancer, too.” I am really proud of my dad. Does he know Joe? Maybe. They both live in the same city and he also plays a lot of golf.

Bob, his friend: Ben’s scar isn’t pretty, and his breast looks different, but it’s nothing to be ashamed of. Plenty of our friends who were in the war have scars and bullet wounds. His scar doesn’t look any worse than theirs. I don’t think it’s as traumatic when a man loses a breast. Maybe I’d feel differently if it were me. Ben was okay over losing his breast.

Ed, his son: My older brother, younger sister and I supported Dad in his decision to have a mastectomy. My children, then two and five, knew their grandpa was sick, but only my five-year-old daughter understood. We told her that her grandpa was having an operation and was going to be okay. She knew her mom and I were worried. It was pretty obvious. After his surgery, she made us take her to the hospital so that she could make sure he was okay.

My siblings and I were over at my parents more often than normal. I think we tried to do things for them, but my mom is a very take-charge kind of person. She’ll let you know when she needs anything. So we ended up taking more of a backseat waiting for them to ask for help. Breast cancer was a main topic of conversation among us kids. I think it’s only natural for the children to talk because of the uncertainty. My brother and I talked about our now being more at risk.

Because I was concerned about the cancer having spread to two of the lymph nodes, I started reading everything I could get my hands on to educate myself. It’s amazing how much information is out there and how much is recycled. I found some frightening mortality facts which scared me. I didn’t say a word to anyone, including my wife. Educating yourself is important so that you can ask the right questions. Even if the questions aren’t asked or if you think there’s something the person with the diagnosis doesn’t know, you can tell them the questions they need to ask.

Bob, his friend: I’ve been close to the children since they were small. It was hard for them to see their dad, particularly on a bad day. On those days they might say something like, “Do you see him coming out of this?” Or, “How’s it going to affect him in the long-term?” All I could do was to be positive and tell them it was all part of the process of chemotherapy. I said, “He’ll gradually get back to normal. Just like he gradually reacted to the effects of the chemotherapy. He didn’t change overnight.”

Ben: I don’t think Sue changed much concerning checking herself and getting mammograms as a result of my breast cancer. But, for awhile we both went in together when it was time for her yearly checkup. I still don’t think it fair they didn’t give Sue and me discounted rates when we went in together for our X-rays. They would X-ray my remaining breast which wasn’t painful, but it was difficult getting it into the machine. I don’t do mammograms anymore. I’m also not great about remembering to do breast self-examinations unless I see “buddy check” reminder on the TV. I know it’s important, but it’s not uppermost on my mind. If you do have a buddy system, maybe it will make you look a little bit more. Do my children do BSE? I don’t know, but I probably should ask.

Sue, his wife: When I told the children, “Everyone get a mammogram” after Ben’s diagnosis, my daughter’s gynecologist said to her, “No way, you’re only twenty-eight.” Right after that, the young LPGA golfer Heather Farr died. A parent can only push so hard. The boys know they need to pay attention to their bodies. Do I worry about my children getting breast cancer? It doesn’t rule my life, but like a typical parent, I worry about everything having to do with my children. Getting breast cancer isn’t a big fear of mine. I do check myself, but not as much as Ben.

Ben: I suppose in the beginning I thought about dying. But I trusted my doctor, and he told me he had gotten all the cancer. I also did all the treatment he recommended. It got to where I felt like I had beaten the cancer, that I was not going to die so I decided to stop worrying about it. Even when I lose friends to cancer my attitude is, “It’s not going to happen to me.”

I’m not into support groups, but I do talk to other breast cancer survivors because I’m trying to give back. I am not out on the street preaching, but I’m not hiding it. It helps to talk to someone who’s had the same problem. I show my scar when someone wants to see it, and I tell them, “This is what you don’t want to get.”

I am not much different today than I was before I got sick. Perhaps more mellow, but I am also older. I have gotten serious about exercising and have taken off my chemotherapy weight, plus some. Food is not as important as it was before when I would awaken in the morning wondering what was for lunch and dinner. I still love fried foods, but I’ve cut way back on them.

I am beyond the five-year mark. My doctor says I only need to see him once a year, but I like to get a blood test every six months. That is my security blanket.

Sue, his wife: It was emotionally draining watching Ben through chemotherapy and seeing the toll it was taking on him. There was always the fear that because it had gone to his lymph nodes, it might come back. You wish you could get rid of the fear, but even with the passage of time, it’s still there. Dealing with it is an ongoing thing. When he gets an ache or pain, the reality is, “Could it possibly be?” Ben knows if something new is going on with his body. Perhaps he is a little too much in tune with his body, but I would rather he be this way than not.

Those who have been through chemotherapy understand about the association of smells. Even today, walking into Ben’s oncologist’s office brings up a sea of emotion for both of us, him more so than me. These visits are important to both Ben and the staff. He needs that warm welcome back, and they need to see a survivor because he represents hope. Survivors like Ben make the rest of us not so afraid, because they went through it and they’re okay. We used to group the big “Cs” together. But people have to understand there are different cancers, different treatments and lots of people with cancer survive. Part of the hope is seeing the long-term survivors. A positive attitude is so important.

Ben is a wonderful “fellow sister.” Because he has had the disease and is so open about it, women can talk to him even when they won’t talk to anyone else. It also helps Ben. The worst thing anyone can do is not to acknowledge that someone has cancer. By saying nothing, it’s like saying, “Oh no. You have the plague.” We’ve known people who have literally turned and walked the other way when they see Ben coming. We understood that they didn’t know what to say, but people who have not had the disease need to realize that those who do have cancer want to be treated normally. When your battle with cancer becomes the most important thing in your life and you’re fighting for your life, you just can’t ignore the fact that someone has the disease and say nothing. It’s not a nice feeling when you’re treated differently because you have cancer. It’s a strain. Don’t people realize it’s just cancer? Sometimes you feel sorry for people because they don’t know how to handle it. My emotions are more on the surface than Ben’s, although I do not mean that he does not deal with his emotions because he does. We can laugh, which is good and we can cry, which is healthy. It’s hard on him when he sees a friend who is dying of cancer. Particularly when he sees that they have given up. It brings up old fears . . . “It could have been me.”

Life is much more precious since he got sick. We’ve come through a really scary time together and have managed to overcome something. Maybe the moral here is that cancer teaches you something about the important things in life. Just in case you’ve had any misgivings along the way, it always gives you back your priorities.

Ed, his son: Both of my parents are strong. One of Dad’s needs is to be babied by my mom, which she does very well. We all knew Mom was scared, but we did not want to make an issue out of it. We just acknowledged that she was and did not treat her any differently than we normally did. All of us kids kept up a continuous, upbeat attitude. Almost like laughing in the face of adversity. We tried not to let things bring us down.

Even though Dad and I never had any deep philosophical discussions, we did talk while he was going through treatment. He never came right out and said, “I hope I don’t die,” but I did catch him being reflective a time or two which was unusual for him. Even though he didn’t let on a whole lot, I knew he was concerned.

Although I have always appreciated my dad and we have always been able to say “I love you,” it wasn’t until I thought I might lose him that I really appreciated him. And it taught me that you can’t take things for granted. If you like or appreciate someone, tell that person now because there may not be a later. We go through life fat, dumb and happy until something bad happens. For me three things happened, almost back to back, which put things into perspective. The first was saying good-bye to my dog and grieving him, which was the most important thing in my life at the moment. The second was the telephone call telling me Dad had breast cancer. Suddenly, my dad took priority. No matter how much I loved my dog, there is no comparison. The third event came about a month after Dad started chemotherapy. My daughter contracted viral encephalitis on her fifth birthday. For thirty-six hours we did not know if she was going to live or die. I cried a lot during that time. My wife and I, our marriage, our family, our values, everything, were tested. It was a very bad, scary time. You think you control your destiny, but you do not even come close. You have no control. It hurts to see those you love hurting. And I have now seen it as a child and as a parent. You’d almost rather that it was happening to you. My father and my daughter are both fine today. Thank God. It’s the rainy days though that make the rest of life sweeter.

Bob, his friend: This whole thing was really hard on Sue. She kept pretty much to herself and would not show her emotions too much because she didn’t want Ben to see how worried she was. She has become a stronger person for it. I was never afraid that Ben would die. I always told him, “You’re too stubborn to die.”

It amazes me how many people are surprised that he had breast cancer. A lot of men have never heard of it. When they find out, their reaction is, “You’ve got to be kidding!”

My oncologist and I have become good friends over the past nine years. The monthly visits that were a part of the beginning treatment have now dwindled to visits three times a year, and will continue at that rate until at least April 2001. Any aches, pains, strange feelings, tender spots and especially lumps have been reported immediately. Although that may seem as if I am apprehensive, the reality is that I am just so much more aware of my body than I was nine years ago. One has to constantly remember that an early detection is not a death sentence. In fact, it is quite the opposite.