​In Search of Wisdom: Breast Cancer Help Wanted​

Traveltext

This is a post from one of my MaleBC brothers, Khevin Barnes, asking for feedback from women on this forum.

A male breast cancer survivor looks for answers from those who know best.
Of all the essays I've written about cancer and its challenges, I've never started with a plea for help. But as a man with an "orphan disease" (meaning it is underfunded, rare and little-understood) I want to find my footing on this rickety road, and I would like to help others who follow in these footsteps.

My world and my work have been forever altered by my diagnosis, mastectomy and the myriad issues that are destined to be with me for the rest of my life. With regard to my chosen vocation, I've worked as a public speaker for 40 years. Finding cancer in my breast has inspired me with a new theme to talk about as a breast cancer survivor, and I'm fully dedicated to sharing my experiences with anyone who cares to listen.

But here's the dilemma: Most breast cancer survivors and the people I speak to are women, and so I feel that I'm starting out on the wrong foot.

What would women like to hear from a man who shares their cancer? Can a guy offer anything in the way of advice, comfort, inspiration, hope or support? Are women receptive to a male interpretation and perspective on breast cancer?

I believe that for many women, it's no easy task to get your husbands and sons to talk about your breast cancer, let alone how they really feel about it. So when I visit women's breast cancer conventions or meetings, I always wonder what I can share as a man that might be helpful.

The solution, at least to me, seems simple. Ask the experts. I'm not talking about oncologists, medical doctors and the like, many of whom do wonderful things for us, but I'm speaking of those with firsthand experience, the people who truly know breast cancer from the inside out.

So ladies, I really need your help.
We know that men and women have breasts, all of which are capable of harboring cancer.

We know that I as a man can feel the same kind of fear and anxiety as you do as we endeavor to survive, and that we feel similarly about the threat of dying and the impact our illness will have on our families.

We know that just like women, men are confused by the multitude of treatments, drugs, tests and procedures that confront us. I know from personal experience that we men are far less likely to openly discuss our concerns, our fears, our needs and even the fact that we have (or had) breasts.

And so again, women survivors, I'm asking for your help.

Please answer just four questions to set me straight. Your input will make a world of difference in my ability to be of service to our cancer community.

1. Do the men/boys in your life talk to you about your breast cancer? What aren't they asking?

2. What can a male breast cancer survivor offer you in the way of hope, encouragement or support?

3. Do you resonate with the idea of adding laughter and humor to your cancer for health and healing?

4. What do you most need to hear from your husband, boyfriend, son or male partner as you move through your cancer experience?

You can respond right here in the comments area or drop me an email at: Khevin@BreastCancerSpeaker.com

I'll follow up with a blog summary of all the information I receive and I won't use names. My deepest gratitude to all of my breast cancer survivor sisters!

Khevin Barnes is a male breast cancer survivor and stage magician. He is an Emmy-award-winning television writer and producer and writes often about healthcare. He resides in Vail, Arizona, and travels wherever he's invited to speak to women and men about cancer. www. LaughingThroughBreastCancer.com www.BreastCancerSpeaker.com

Traveltext

Thanks marieB, that's a very honest and poignant post.

octogirl

My thoughts:

1. Do the men/boys in your life talk to you about your breast cancer? What aren't they asking?

My son asks me about it quite a bit. More than my daughter, interestingly: she asks about my health generally, sends notes, cards, visits, all of that, but in terms of really talking about it: no. She doesn't seem to want to know details. about as much as she has said to me is that she feels that she inevitably will need to deal with it herself (in addition to my dx two of three of her aunts - my sisters- have had bc. no genetic connection that they've found at least yet, though we have done testing.) Also interestingly, her husband, my SIL, asks a fair number of questions, partly out of concern for me, but also because he wants to know more about it in general. (I think because he is worried about his wife/my daughter and her odds). Anyway, getting back to my son: my impression is that he is trying to figure out if I am really ok. His girlfriend's mom had bc and his GF is quite well informed, so I think he is trying to figure out where I am in terms of dx, prognosis, etc. He seems to want to know details more than my daughter does, and seems to know what the details mean. Both son and daughter are in early thirties, btw. I was 61 at dx.

As for my husband, he only talks about it when I bring it up. If I ask him how he feels about something he will answer, but otherwise, pretty much not a peep. He is very supportive in terms of taking care of me physically when I need help, and he comes to almost all my medical appointments, but he doesn't ask lots of questions in the apts., nor of me. He will talk if I say I want to, but he clearly would rather talk about other topics. Denial, maybe? I don't find him to be unsupportive, just quiet. The one time he really talked to me was when I was upset about losing my hair: for a while there I couldn't even bear for him to see me bald...so when I finally came home one day and told him I had to take off the scarf because it was hot but was afraid of his reaction to my baldness, he took me in his arms and really talked to me about how beautiful I was to him regardless, and I should be myself around him and, well, sigh, you get the idea. Much more talking than he usually does and he said all the right things.

2. What can a male breast cancer survivor offer you in the way of hope, encouragement or support? Depends on the person, I suppose. Probably the same that a female could if support given in a way I can relate to. I do really like reading your posts and perspectives, treveltext, because you are well informed and have a similar perspective to mine on the politicization and sexualization of bc. I HATE pink ribbons and all that, so I love your thoughts on that topic. To me, for a lot of the support and encouragement I need, not sure it matters whether it comes from another woman or from a man. For some topics (sex and bc, losing hair are two notable ones) I'd much rather get the support from another women. Not sure a man's perspective would help, especially when it comes to losing hair! Being bald is a whole different thing when you are male than when you are female, IMO.

3. Do you resonate with the idea of adding laughter and humor to your cancer for health and healing?

Always.

4. What do you most need to hear from your husband, boyfriend, son or male partner as you move through your cancer experience?

Physical contact from my husband. Humor from my son: when he makes jokes, I know he thinks I will be ok. Actually, I crave that from my husband as well (as it happens my husband is an extremely funny person so I am lucky in that respect).

Best

Octogirl

Traveltext

Thanks Octogirl, I can see you are just over a year post surgery and I hope your husband is exercising his funny side to keep you well!

ShetlandPony

1. Do the men/boys in your life talk to you about your breast cancer? What aren't they asking?

My husband and I have learned together and discussed everything medical. He goes to all my appointments with me. We are a team. As far as the mental/emotional side of things, our support group leaders helped us learn that sharing our feelings about cancer stuff promotes intimacy. Trying to protect each other from our fears etc. puts distance between us. (By the way, it is not "my cancer". I disown it.)

2. What can a male breast cancer survivor offer you in the way of hope, encouragement or support?

The same hope, encouragement or support a woman can. We are more alike than we are different. I was in a stage iv support group for a while, men and women, various kinds of cancer. We shared a similar experience emotionally.

3. Do you resonate with the idea of adding laughter and humor to your cancer for health and healing?

Absolutely. In fact, my husband and I can laugh at cancer stuff that would make the uninitiated squirm.

4. What do you most need to hear from your husband, boyfriend, son or male partner as you move through your cancer experience?

What he says: You are beautiful; those scars and that port don't matter to me. It is possible a cure will be found (probably immunotherapy). And what he doesn't say but I know: We are still us.

I would like to say that I hope female bc patients can be aware and inclusive, and support our brothers who had/have bc. I don't want them to feel like outsiders. So I am definitely interested in hearing a male perspective on bc.

Traveltext

Thanks SP, you've made a great contribution to this topic, just as you do elsewhere on the discussion boards here. Do you think a bc humor thread would work on BCO? I know from first-hand experience that there's is lots of laughter and good cheer here, but perhaps newbies would not think humor very appropriate just after diagnosis!

Traveltext

Any more takers for this survey?

ShetlandPony

I don't mean to imply above that there is anything funny about cancer and cancer treatment. Sometimes we laugh so we don't cry. Strange, scary stuff starts to feel more matter-of-fact.

Mominator

Having gone through two breast cancer diagnoses with my mother, and recently gone through MBC/hospice with my friend, I have some opinions I would like to share. I have the BRCA2 mutation. I've had prophylactic BMX and a BSO.

1. Do the men/boys in your life talk to you about your breast cancer? What aren't they asking?

The men are worried. They want to help as much as possible and they want to cure this. They want to know we're going to be okay, that we're going to get through this.

What they aren't asking about is how to make decisions. The men, and their ladies, really need information on how to choose between treatments, that some treatments work better or worse on some cancers, and when to consider hospice.

My dad wanted to "get it all" and "make sure it doesn't come back." He was really pushing for chemotherapy for my mom's stage III cancer. He thought that chemo was her best chance, and he didn't understand that chemo was contraindicated by her other health conditions.

My friend's husband was still "hoping for a miracle" while her condition was deteriorating. She lost her vision over several months, started having seizures, lost her balance and strength to walk, and had trouble with memory and reasoning. Eventually she lost her ability to speak. She would have benefited from hospice services a few months before he finally signed the papers. Sadly, she couldn't say what she wanted at that point.

2. What can a male breast cancer survivor offer you in the way of hope, encouragement or support?

Well, we are all fighting the same disease, often using similar treatments. Women and men have similar fears, anxieties; they feel the threat of dying and worry about their families. The treatments and side effects are tough on their bodies and spirits. So yes, male and female patients and survivors can support one another.

For women, is a disease that robs women of our femininity and our sexuality, from how we look (loss of breasts and hair), to how we feel (loss of estrogen causes diminished or complete loss of libido; mastectomy destroys the nerves responsible for intimate sensation from the breasts, even in nipple-sparing mastectomy).

Edited to say that I really don't know how it affects men in these areas.  

3. Do you resonate with the idea of adding laughter and humor to your cancer for health and healing?

Laughter can be helpful in some situations.

4. What do you most need to hear from your husband, boyfriend, son or male partner as you move through your cancer experience?

That he loves me and will support me, and will help me make decisions, and will stand by me even if he disagrees with my decisions. Which treatments to do and which to skip are also the woman's decision. Whether to reconstruct is ultimately the woman's decision.

Here's a couple more things I'd like to share with Khevin, but not covered in his questions.

I am uncomfortable with the term "survivor," as it suggests that one can fight hard enough to overcome adversity. My mother is a two-time survivor; many friends are survivors, many are not. My friends Lori, Ann, Lauren, Mary, and others fought very hard to survive and died anyway. Cancer doesn't care.

Also, I wish we could get rid of all the pinkwashing and paraphernalia and sexualization of breast cancer, and especially all the misinformation and half-truths. I know Traveltext has been working hard to get the word out that men have breasts and get breast cancer too. One misleading slogan is that "early detection saves lives." It saves many lives, but it doesn't save all. Some forms of breast cancer are very aggressive. Some patients get diagnosed at stage IV. They didn't do anything wrong.

I wish we could focus on hard data and work for a cure. I wish that money raised was used for treatments and finding a cure. (I'm particularly intrigued by the preliminary data on Toradol/Keterolac in preventing recurrences, but is not getting the funding for research. https://community.breastcancer.org/forum/73/topics/833612 )

We can't always "save the tatas" (another slogan I hate), but we can work hard to save the lives of their owners and find a cure, or even prevent, this horrible disease.

ShetlandPony

Excellent post, Mominator.

Traveltext

Mominator, agree with SP, this is a great and thoughtful post. Quote: "I really don't know how it affects men in these areas."

Women are certainly robbed of their femininity and sexuality and diminished estrogen blockers must greatly affect libido. I don't get the sense it's the same for guys. For some men, though, bc carries the stigma of being a women's disease, and although I've only found this to be concerning for one of the 20 men I know quite well with bc, it must surely be one of the reasons practically no men post on BCO.

As far as aesthetics goes, I hear women regularly complaining that reconstructed of breasts are a lengthy and traumatic surgical episode. And the lack of sensation must be dreadful. Men, on the other hand, are not offered reconstruction, so live with a one-nipple look with a big hairless square where rads have killed hair follicles that never grow back. Once asked about this weird look by my young grandkids, I said I was in a sword fight (but you should have seen the other guy!).

But, after a couple of years of learning about this disease from a women's perspective, and from communicating with bc men, I can see more similarities than differences. Basically, we're all in the same boat with the same alternating fears and hopes, and a desire to help get through it all.

As to Khevin's project re the role of laughter in dealing with bc, I reckon it is equally as important as a good cry. Both these emotions are therapeutic in their own way. Certainly, when we lose a member to bc that we've bonded with on a particular topic, there's no humor, just heartache. I built both MaleBC.org and PinktoberSucks.com based on what I've learned here and through a lot of research, and have come to loathe much of the marketing hype around this disease, including the emphasis on awareness of early detection at the expense of funding research and supporting those at stage IV. Often even playing down this stage of the disease. And the huge pink hoopla that raises bucks on the empty promise of finding a "cure" is obscene. There's no charity as successful as a bc charity they say, but when they know that late diagnoses in men leads for poorer prognoses, and refuse to add a bit of blue to their pink campaign livery, that is, IMO, unconscionable.

Mominator

Traveltext, thank you. I'm glad someone is asking these thought-provoking questions.

The pink houpla certainly doesn't help remove the stigma that this is a woman's disease.

Do men want any reconstruction? Are the male mastectomy incisions done to minimize scaring? Would nipple-sparing mastectomy be a desirable option for some men? Would NS mastectomy provide large enough clean margins for a male patients, given the smaller amount of tissue? During NS mastectomy surgery, tissue is sent to pathology to determine if the nipple-nipple areole complex (NAC) is cancer free. Would men desire nipple reconstruction? I don't think anything can be done about the hair follicles.

Pinktober has now spread to May. Our local hospital system has a "Paint the Town Pink" campaign. https://www.meridianhealth.com/community/events/pa... "to raise awareness of the importance of annual mammography and to spread the word that early detection is a woman's best defense against breast cancer."

My town joined the campaign this year. The main street had a big pink bow and ribbon hanging on every single telephone pole for about 2 miles. I think it was partly in support of my friend and neighbor Lori who was in her final battle of breast cancer. She was very active in the community, and I think the community wanted to support her.

However, I found the campaign uncomfortable because Lori had been getting her annual mammograms, and it wasn't enough to protect her. She was diagnosed stage IV from the beginning. She was already very sick, blind, and cognitively impaired by the time the ribbons were being placed mid- to late-April. She died May 25.

My breast surgeon's office is completely pink-washed. She, her staff, and many patients participate in the Komen walk every year. I gave my BS information on pre-incision Toradol/Keterolac for preventing recurrences. She politely took the information but added that she doesn't act on anything until research has proved it. But she doesn't seem to be actively following the research nor contributing to it. She is also Medical Director, Breast Surgery at our hospital. The message is "Early detection is your best protection. Schedule your mammogram today."

http://www.jerseyshoreuniversitymedicalcenter.com/JSUMC/services/womenshealth/BreastCenter.cfm 

Traveltext

I had an excellent surgeon and she worked hard to get all affected material plus all the lymph nodes. She said tumors in men are mostly very close the the nipple because there's so little ductile material, so nipples are rarely, if ever, saved. From the men with bc I know, there's no concern with this. And, almost like a secret handshake, we always swap views of our ops when we meet for the first time.

I predict, within a couple of years, the pink will have a touch of blue to include the one percent of new diagnoses, men. Other changes will happen in time. Here's our manifesto: http://MaleBC.org/manifesto

MinusTwo

That is a wonderful site. Thanks for the link. I'm sure we've made our husbands aware but I hope we all forward it to our sons. I just did.

Traveltext

A message from Khevin via Twitter.

Wow Rod! I am amazed and delighted with the responses received. Your web site is outstanding and it has been wonderful for me to get this conversation going with your help. I will respond to each of these people to express my appreciation and compose a follow-up essay with their input. Thanks, Khevin

If you'd like to help Khevin with his research, feel free to post here, or email him: Khevin@BreastCancerSpeaker.com.