By Marc Heyison
WebMD Live Events Transcript
For men, facing the emotional and physical changes of breast cancer is not always easy. There are resources out there to help men help the women they love. Marc Heyison, president of Men Against Breast Cancer, was our guest in the WebMD University Student Lounge.
The opinions expressed in this transcript are those of the guest and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to the WebMD Student Lounge, Mark. Please tell us about how Men Against Breast Cancer came to be.
Heyison: Men Against Breast Cancer began in 1999 but my story began in 1992 when my mom was diagnosed with breast cancer. Today my mom is a 10-year survivor and I am very fortunate that she is here to see what is being done in her honor. Basically, Men Against Breast Cancer's soul mission is to target and mobilize men to be actively involved in the fight to eradicate breast cancer. And at the same time, MABC offers targeted support services to educate and empower men to be effective caregivers when breast cancer strikes their family.
Member: How do I get my husband to talk -- to anybody -- about this? He won't even talk to me about it.
Heyison: Unfortunately, in my experience, everybody's case and everybody's circumstances are different. I wish I had a set response for every time I was asked that question, however I would suggest that you talk to a healthcare professional about the best way to get your husband involved and see what his/her thoughts are. But what I have found in my experience that works in situations like this is to try and ask open-ended questions about how are you feeling and see if that helps. I know it's frustrating and I wish I could give you a magic bullet answer. If your husband wanted to contact me, I would be glad to speak to him. My email address is [email protected]
The one thing that I would suggest, again based on my experience, is that your husband is very afraid and really wants to be there. He is dealing with his own set of emotions as well. But contact a social worker at your hospital and see what they suggest because they are trained in these situations. And again I would be glad to talk to him if he would like to, either by telephone or email.
Moderator: I like your suggestion of talking to a doctor about getting the husband involved. Men often need a "solution" or a "plan" to deal with a problem. So maybe giving her husband a task involved in care will then cause him to open up and talk.
Heyison: My co-founder of MABC often uses the "Men Are From Mars, Women Are From Venus" analogy. Meaning that for men they do like to have a task list of things to do, whether it be following up with the doctor, making sure the kids are taken care of, making sure the shopping's done, making sure future hospital stays are planned out and making either the wife, or whoever the patient is, comfortable. I suggest discussing this with a healthcare professional.
There are differences in most situations where men do feel a little more helpless because they aren't able to fix this problem; it's out of their control. But there are many areas in which men can and do play a critical role in being there for the woman he loves. Again, first and foremost, letting her know that you love her and that you're going to be there for her, to understanding that it's OK to cry in front of her, that she wants to see the emotion. Those are just a few of the many things.
And what I personally feel may be one of the most important things that a man can do is to realize that it's OK to take care of himself as well. And what I mean by that is that the caregiver needs to be emotionally secure with himself and to understand that if the situation warrants, it's OK to play golf once a month instead of every Saturday just to take care of his needs. And I say this because if you're not there for yourself, you can't give all of yourself to helping your wife and your family. I don't want this to sound selfish for the men but at the same time, it's difficult sometimes to come out because the man will feel guilty that he's doing something for himself.
I like the analogy that if you put enough pressure into a jar and put a lid on it, eventually it will explode. There needs to be some type of release. And again, every situation is different and I'm not advocating doing this unless the situation is stable enough to be done. And golf is just one example; it could be reading a book. Everybody's case is different.
Member: What can be done by the men who may be concerned that their wives or girlfriends may have breast cancer?
Heyison: One thing that a boyfriend, lover, husband can do is ask their partner if she's done her monthly breast self-exam. I say this understanding that there is some controversy about MBSE, but for me in my opinion, if you can be encouraging and not demanding in this situation it may help in getting your partner to follow proper breast-health guidelines. I have also learned from various people that some men actually do perform the MBSE on their partners and have even heard several cases where the partner discovered a lump.
I go back to be encouraging and not demanding and maybe say something like, "Honey, I love you. I care for you. Is there anyway I could help you follow the proper breast-health guidelines?" As opposed to saying, "You need to do this" or, "You need to do that." For the best information on how you can help, contact a healthcare professional in your area.
Member: I need my husband's help but I've always been the one who took care of everyone. I don't even know what to ask him to help me with. I don't want to have him see me as different. I still want to be seen as his wife, not as a cancer patient.
Heyison: That's a good question and one that's asked a lot. And I'm not sure what you may or may not have done at this point, but I would pose that question exactly the way you worded it to me, to him. And say, "I need your help, but I'm afraid that you may look at me as different and I don't want you to." And let him know that you need him. "But things are different at this point and I do need your help."
I'm not sure what help you're asking for whether it be with the kids, paying the bills, or household chores. But again it all centers around letting him know you need him and that you're afraid, if you really are afraid. I would refer you to your hospital social worker or support group because people are dealing with these same issues and they're trained to help you and they do help.
Member: When my grandmother had a mastectomy, my grandfather had a very difficult time dealing with her new appearance. Men are so visual; it must be hard for many of them to adjust to the physical appearance of their wives, from chemo hair loss to post-surgery. Would you agree?
Heyison: From what I've heard, I would agree to a point. My situation with my mom was very fortunate and lucky in that she had a mastectomy and took tamoxifen with no radiation and no chemo. I can tell you, though, that my dad, who was 62 at the time, had no qualms at all with my mom having a mastectomy and still being around. It was a no-brainer for him. However, each case is different and my experience with the people I've talked to is that the younger the woman is when she's diagnosed, the more issues there are related to sexuality and appearance. But in my opinion, considering death could be the alternative, I would still look upon my wife as somebody I desire, with or without her breasts.
Unfortunately, there are issues that arise in which men do have visual and emotional issues with the loss of their partners' breasts or breast. And I am no an expert to offer solutions, other than to contact a trained psychologist or social worker to deal with those issues, because they can be worked out.
Moderator: What is MABC's "Survival Skills for Men" program all about?
Heyison: We've got two support service programs that we offer. The first one is being developed with Johns Hopkins University and is called Survival Skills for Men. The goal of this program is, by working with the man's problem-solving techniques as it relates to dealing with his partner's breast cancer, that it will reduce his anxiety and therefore correlate into a better quality of life in helping and assisting in his partner's care. And this will be part of four sessions that will target men only. The goal of this is to get measured results that will correlate: as the problem-solving techniques increase so too will the quality of life for the patient. This program is in the final stages of the internal review board at Hopkins.
In addition to Survival Skills for Men, a program that we have now and is available is called Partners in Survival. This is an educational, half-day workshop in which MABC partners with a local healthcare facility in bringing this outreach program to its patients and caregivers. What we focus on is dealing with the emotional aspects of navigating the crisis of breast cancer. There is not a lot of discussion at this program of treatment or financial options, but how to deal with this as a family.
One of the sessions is for men only, in which our goal is to open the dialogue and share information that will enable the man to be an effective caregiver. This program is something that is being done and can be done throughout the country. There is no charge for the people who participate. Our goal is not to reinvent the wheel, but to provide solid information to help the family deal with this crisis. If anybody is interested in more info, they can email me and I'd be glad to help. For more detailed information, please go to www.MenAgainstBreastCancer.org.
Moderator: The breast cancer community is so large and vocal; there is a real feeling of sisterhood at events like the Race for the Cure. Do you find that men sometimes feel a bit shut out from that world?
Heyison: Yes, I do. And I say this from personal experience, but I strongly feel that we need to get over it. Men do play a critical role in helping the family deal with breast cancer and there are many men, and I mean many men, throughout the country who have done great things when breast cancer struck their family. And I personally believe that the more men that continue to show up at these events to show their support and their willingness to be there, the more people will realize the significant role that men play.
I like to say that my mom did not raise her hand and say, "Can I have breast cancer?" So I am not going to raise my hand and say. "Can I help?" I am going to say, "What do you want me to do? And how do you want me to do it?" In my situation, my mom was always there for us, my brother and my dad, and it was our turn to be there for her. And I think that's how we have to approach it.
Member: My mother has breast cancer. My husband is now very afraid that I will develop it too. How can I reassure him?
Heyison: I don't know that you can. It all depends on your age, how old your mother was when she was diagnosed, as well as other risk factors involved. And again, the best advice that I could offer is to go see a doctor. I don't have the expertise to offer that kind of advice except to say to get the best medical advice possible for you and hopefully your husband can be a part of that process.
Moderator: If he gets educated about the risks it will seem less scary to him. So tell him to surf WebMD!
Member: Did your father ever see any physical signs of the breast cancer apart from lumps?
Heyison: My mother was diagnosed from a mammogram, which she did religiously. She was 55 when she was diagnosed. So to my knowledge, my mother was diagnosed with lobular carcinoma in situ, so there was no [palpable] tumor. However the one thing that we all learn from this, with my mother being the first one in our family to be stricken with breast cancer, is that the biggest risk of breast cancer is being a woman. The second biggest risk is getting older as a woman and the last risk I'm going to mention that really opened my eyes, and I've heard different numbers but all within these parameters, is that 85% of breast cancers have no prior history. I've heard this number be from 75-87%, but it is a high number. People have to realize that just because breast cancer doesn't run in the family doesn't mean it won't strike the family. That obviously is not a comprehensive list of all the risks, but those three jumped out to me because they're simple and powerful.
Member: It seems that men are uncomfortable with breasts, other than as sex objects. A mother nursing a baby makes some men uncomfortable. How can we reduce that level of discomfort?
Heyison: Again, I would say that there are men for whom this is true and that every situation and relationship is different. One way to approach it may be to ask your partner to help you with your monthly breast self-exam. And to talk about whatever issues there may be, openly. You can also get either your doctor to help talk about this issue, and/or a trained mental health professional. Education is a powerful tool, and to search places like WebMD can provide info that may help the comfort level.
Moderator: How should a dad explain mom's illness to the kids, especially school-age children who might not understand what cancer is?
Heyison: I would defer that question to clergy, a social worker, or somebody who's trained in these areas. "School-aged" is a wide range and it depends on whether the children are boys or girls and so many other variables that I would only be comfortable in saying to have someone who's trained assist you. And to be as open and honest as possible, and as it relates your specific situation.
Moderator: In other words, don't feel you have to have all the answers yourself, right? Another manly trait!
Heyison: Right. It's not a crime to ask for help.
Moderator: For men who have lost a spouse or girlfriend, what can they do to keep up the fight against cancer in her honor?
Heyison: The cofounder of MABC, Steve Peck, lost his first wife six years ago to breast cancer. He's been remarried for two years to a wonderful woman who supports all of his efforts in what he's doing in honor of his first wife's memory. And I believe, personally, whatever you feel comfortable doing in honoring a loved one who has passed away is a great tribute and it only requires that you feel you've given from your heart.
Moderator: We are out of time. Thanks for joining us, members, and thanks to Mark Heyison, president and co-founder of Men Against Breast Cancer, for being our guest.
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