Wrong Disease, Wrong Gender

Friday, April 24, 2009

Question

I am a 26-year-old man who has breast cancer. Just writing that sentence makes me want to throw up, but I've tried to write this e-mail about ten times, and I have to go through with it. I just don't have any place to go for information or support.

This is the story. I found a lump on the left side of my chest about three months ago. It didn't hurt, so I might have ignored it if I didn't have a checkup scheduled. My doctor luckily found it and thought it was serious. I say "luckily," but this has been a long, long nightmare. After a bunch of tests including a mammogram, I am scheduled for surgery and then might have to do radiation or chemotherapy, depending on what they find.

I am terrified to have cancer. I guess being in my twenties I thought I was immune to serious health problems. But I don't know how to talk about this specific health problem with anybody. I am so afraid of being ridiculed. My family and friends don't know, and I am not in a relationship, so there's no girlfriend to hide this from. Medical personnel have not helped me with this either. When I told the doctor I didn't want to go get a mammogram, she said, "Now you know how women feel." The testing center at first didn't believe I really had an appointment there. Everybody stared at me. The mammogram technician was very rude, and the test was painful and humiliating.

A very large part of me says that if the surgeon and hospital nurses the people who do the follow-up treatment are going to treat me this way, maybe I don't want to go through with getting treatment. I know that is crazy, but you have no idea how isolating this is. I didn't even know men could get breast cancer. Now that I think about it, of course that makes no sense—cancer can affect any part of the human body, I guess.

I'm not sure if I even have a question for you. But I figured you were one person who was far enough out there that this wouldn't faze you.

Answer

I am very, very happy to hear that you went to a doctor and got prompt attention for this problem. However, I think you might want to consider getting a different doctor. You need to feel that your cancer treatment team values your human dignity, will keep you fully informed, and cares about keeping you alive and protecting your quality of life. Somebody who feels that you should be punished because women have this disease, too, is probably not a great ally for you. I am really sorry that she reinforced the shame and confusion you were already feeling. But not everybody will be like that; there are decent people in this field who will want to help you, with compassion and respect. They will understand that you are freaked out and why. They won't kick you while you are down. But you will need to feel strong enough to be your own advocate, and demand decent treatment, and get complete information about the stage of your disease and your treatment options, and the possible outcomes and side effects.

Cancer is a serious and potentially fatal disease. Early detection and treatment radically improve your chances for a cure. Please do NOT let your own embarrassment or ANY harassment or lack of understanding from medical professionals slow you down. GET FULLY DIAGNOSED AND TREATED. Stick with the treatment, and show up for the follow-up care as well. This is a disease that can come back! Your life isn't over—don't commit suicide just because you have a disease that is rare and poorly understood. I am going to give you some general information below, point you in the direction of some additional resources, then talk about how to start communicating with your family and friends. This is very, very urgent. You should not go through this alone.

According to the American Cancer Society, the lifetime risk of breast cancer in men is about one-tenth of 1% or one in 1,000. Put another way, the disease is one hundred times more common in women. Nevertheless, in the U.S. alone, about 2,000 new cases of breast cancer will be diagnosed in men each year. It was once thought that the outlook for men with this type of cancer was much worse than it was for women, but new research that looks at the phase of each patient's cancer has determined that men and women have about equal odds for recovery.

Because this is a comparatively rare disease in men, risk factors are poorly understood, and no one has developed a gender-specific treatment protocol. But we do know that the risk goes up as men age. In fact, the average age for men with breast cancer was 67 years. But it can happen to men at any age. If you have a history of breast cancer in your family, you have a higher risk of inheriting genetic mutations that increase your risk. Being exposed to radiation, working in a very hot environment like a steel mill, obesity, heavy drinking or anything else that harms the liver, testicular malfunctioning, treatment with or exposure to estrogens, and Klinefelter syndrome (a genetic condition in which a man has more than one x chromosome to go with his y chromosome) are also known to be risk factors for male breast cancer.

Go to www.cancer.org to access the American Cancer Society's extensive information on this topic. They have clear information about anatomy, diagnosis, treatment, and questions to ask your doctor. They also have specialized information about whether to consider genetic testing if there is breast cancer in your family.

Another good website is at www.networkofstrength.org. They have a 24-hour Your Shoes Support Center and a Match Program that will hook you up with another guy who has survived breast cancer. Search for "male breast cancer" on this site, and click the electronic links. You can also call 1-800-221-2141. They have an excerpt from an excellent address by Judge John L. Kane, a man who had breast cancer and spoke at the Susan G. Komen Race for the Cure in 2004. It's inspirational without being sentimental. This website points out as well that men are much less likely than women to do self-exams or think of themselves as being at risk for this illness. So the average time from the appearance of the first symptom to diagnosis is 19 months. This is scary, because with less tissue in the chest area, breast cancer in men is more likely to spread to the chest wall. This is why I urge you not to abandon treatment, no matter how hard it gets. Your life is worth saving.

If you can deal with all the pink, the Susan G. Komen For the Cure website also has good information specifically for men. You can find them at www.komen.org.

There are on-line support groups for every medical problem. I found one for this issue at www.mdjunction.com/male-breast-cancer. If you get on-line, you can probably track down others. The John W. Nick Foundation, Inc. was set up specifically for educating men about breast cancer and helping survivors. They have a hotline from 10 a.m. to 4 p.m. Eastern Standard Time. Call 772-589-1440 or 866-222-4441. Check out their site at www.johnwnickfoundation.org.

Sometimes all it takes is a change in language to make this a more manageable topic. I don't see why you have to tell anybody that you have breast cancer. Simply tell them you have cancer or a tumor that needs to be biopsied or removed. If somebody asks what type of cancer you have, say, "That's kind of personal." Or you can reply, "It was on my torso" or "The tumor was in my chest" or "pectoral muscle." The word "breast" used to be a common synonym for "chest" and was gender-neutral, but we aren't living in the Elizabethan era any more, unfortunately for you. So find a terminology that is easier for you to use.

Why should you tell people? Because you might need help, dummy. You might want somebody to take you to the hospital, cook for you, or help you around the house. You might need time off work or an adjusted work schedule. Someone to act as your advocate with insurance companies or the hospital would take a load off your shoulders. Maybe you could use somebody to do medical research so you don't have to be your solitary advocate. It is good for those of us who are not sick to help one another. People need to be part of friendship networks, families, and communities. We build those connections by knowing who among us is hurting or incapacitated, and by making sure nobody falls through the cracks. Even if the only thing you need is to talk—why not let somebody else listen and get to know you better via that process? This need not and usually is not a one-sided transaction. The people who know about your problem and become involved will get a lot out of being there for you.

I will also suggest (as I so often do) making use of the services of a professional counselor. There are lots of people specially trained to work with cancer patients and survivors. Get referrals and interview some folks, then pick somebody who suits your temperament and financial means. You will need someplace to express your hopes and fears, someplace where you won't be judged, where you won't have to worry about being selfish or taking care of the other person. This is a scary disease, and I believe that the people who have good support systems face it with more strength and have a better chance of triumphing over those pesky and rotten little cells that ran amok.

Feel free to write again if you need further information or support. This does not make you any less of a man. The only unmanly thing to do would be to hide, ignore this, and pretend it will go away on its own. Cowboy up!

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