Others' reactions to male breast cancer

Charles_Pelkey

I am curious about how most of the men in this group have dealt with telling people about our particularly odd form of cancer.

I have been a reporter and in media for most of my adult life, so I tend to be pretty open about things. Most recently, I was a sports writer, covering the elite level of cycling in Europe and the U.S. for a magazine called VeloNews (by pure coincidence, I was laid-off after 17 years on the very day my diagnosis was confirmed, but that's another story). Since my diagnosis, I've written pretty openly about the whole experience and my readers have almost universally responded with understanding and support.

My question, though, is how people you meet face-to-face react after learning that you have breast cancer of all things.

My rough break down is that about a third thought that I was kidding (I have a reputation for being somewhat irreverent) and sometimes even laughed until they realized it wasn't a joke. Another third of them look really surprised and a little weirded out and the final third respond quite graciously.

My favorite responses have been from women in this community who have gone through the same thing. A woman who is quite active in the local breast cancer support group has invited me to attend meetings, giving me the honorary title of "one of the girls." I appreciated the gesture, but I tend not to go for things like support groups (or pink ribbons), so I declined.

Perhaps one of the nicest gestures came from one of my clients (I am also an attorney) whom I've represented since before my diagnosis and who bought me an extra large coffee mug emblazoned with the "Fight Like A Girl" logo. Like I said, I appreciate irreverent humor and this fit the bill.

Anyway, I am mostly curious about how (or if) other men have broken the news to friends and neighbors and how they responded.

Galsal

At a recent bc support group, there were a few men present altough I know one of them was there in support of his wife. Personally, I so not a fou-fou type of person that the pink ribbon stuff can really go overboard at times.  Guess all those Army years affected my girly sense. 

I knew a man at a previous job who had BC although that was before I knew him.  We spoke of it when my Mother was dx'd with BC back in 99.  

The day of dx?  WOW.  At least an old job of mine back in 2004 had the decency to wait to let me go until a day or two after some biopsy reports had come in.  Thankfully, at that time it was NED.

I know there are many male Vets with BC but I've just not met any of them yet, although I hope to when I'm up at the VA.

Charles_Pelkey

Galsal, My uncle who died of breast cancer did a video for the VA before he died, encouraging men to get unexpected lumps checked.

Yeah, the job thing was a big hit, since that was my source of insurance, but I have survived.

I forgot to include the funniest response to my breast cancer, by the way.

My best friend, a guy I've known for 35 years, god father to my son and best men at each others' weddings, drove out from Kansas City to spend two days with my wife and me as I was having my double mastectomy in Loveland, Colorado.

Normally, a rude and somewhat mouthy character (which is why we're friends), he was quite reserved for the time he sat with us in my hospital room. That actually made me worried, but as I was about to head back into surgery to get my port inserted, he finally got back into his old groove.

He said that it was probably time for him to leave, in that he had to get back to his wife and had a long drive ahead. He stood up, walked to the door, turned and said "Okay, I came here for your mastectomy ..."

To which I said, "Yeah man, and I really appreciate it."

And then he went on to say "... but if you have a hysterectomy ... well, screw you, pal, you're on your own."

I laughed all the way into the operating room and had to tell the surgical staff that line before they put me under. 

mspradley

Hi Charles,

I personally have not met any males with breast cancer, but then again limit myself to this forum as a breast cancer --------- (fill in the d@mn blank yourself because I abhor "survivor", "warrior", etc. tags)..... Lost my train of thought, but that is for our Tamoxifen thread. Anyway, I try to keep all of my cancer conversations to this website. This is the only support group that I need, and even then I am choosy about which thread I jump in on and join the conversation. So, in the virtual world of this website, I have had several conversations that included men with breast cancer from time to time. In the infusion room, there were always several wonderful gentlemen, and while we swapped all kinds of stories, I didn't pry to find out where their cancer was found... It didn't matter to me, we were all simply fighting cr@ppy cancer... Some with more advanced situations than others.



Outside of these discussion threads the world has moved on beyond my diagnosis and treatment and I find safe harbor in that as well. As quirky as your story is, I defended my dissertation at 3:30 and was in the MRI tunnel at 4:30, with the pathology report read to me at 5:30 all in the same day. I became a "doctor" and a patient in the same day. After weeks of biopsies, it was no surprise, but the irony still makes me cringe.



On another note, my city just built a velodrome with little community support. I have high hopes for this "Field of Dreams".

Charles_Pelkey

I appreciate your reluctance to use the word "survivor." I have a friend who says "yeah, I'm a cancer 'survivor' but I'm also a flu 'survivor.' What the hell does 'survivor' mean, anyway?"

I am amazed at your diagnosis story. I think you have me beat in terms of momentous days.

I used to race pursuit on the track. Maybe some day, when I get back in shape, I'll visit the new track in your town ... wherever that may be. 

mspradley

Holler if you are ever this way, which is Rock Hill, SC (just over the state line from Charlotte). Our new "Giordana Velodrome" will actually have the dedication ceremony, grand opening hoo-hah this weekend!

Stanzie

My(ex) father in law was diagnosed the same year I was. He had a mastectomy. Wondering what does that mean for his son and my sons?

Seems like there needs to be a lot more awareness of this disease in men. Thanks for posting and starting this thread.

steelrose

Hi Charles,

I always appreciate it when a man speaks out about his bc diagnosis... I hope more men will tell their stories. My Dad was diagnosed in 1997, and I think he felt quite alone at first. His buddies were a bit bewildered by his diagnosis, but they were very supportive in their own way. I loved the story you told about your friend visiting you in the hospital... my Dad's friends would crack similar jokes and it kept everything light and not too pink!!!

Thank you for reaching out, and I hope that other men will post. Most importantly, I hope that you are in good health and that it continues.

All the best,

Rose. 

debbie6122

Charles- Im glad you found this site but sorry you had to join Bco. Your story of your friend in the hospital made me laugh its good to keep the humor in this if you can. You seem to be pretty up beat in all this, though im sure you've had your bad days as well. as we all have. I pm (private mail) a girl who came here looking for answers for her dad who was also dx (diagnosed) with BC about a year ago, she is from Romania we keep in touch through pms at least 3 or 4 times aweek, her dad is doing very well right now. Breast cancer among men are rare but seems like there have been more on the rise lately, and some find it very uncomfortable to talk about, i think if you dont want a certain person to know about it or dont want to discuss it tell them you are not comfortable talking about it. I personally had more trouble talking to my family than i did friends, mainly because i didnt want to worry them. I hope you are doing well, you are in my thoughts and prayers. Please come back and let us know how you are doing.

Warm hugs

Debbie

Charles_Pelkey

Thank you all for responding. I appreciate the resources here, but am far more grateful for the opportunity to just speak with a few folks about our common experience.

Stanzie, your former father-in-law's experience should be something of a flag for the men and women in the family. As it turns out, I am BRCA2 positive, which raises the chance of a male getting breast cancer significantly (I think it's 0.05% of the general population versus 6% of those of us with BRCA2). The alarm bell for my doctor was the fact that I mentioned my own uncle's death from breast cancer. My female cousin (his daughter) too, had breast cancer and she went after it aggressively, with the same strategy that I did: a double mastectomy and chemo.

My oncologist took a blood sample on my first day of chemo and sent it in for a genetic profile and sure enough, I was BRCA2 positive. Now the question comes up for my two kids - my 17-year-old son and 12-year-old daughter. Our genetic counselor says there is time to gently raise the issue, but my daughter already knows she has - in her words -  "a 50/50 chance of going through what you did, Dad." She pretty insightful, but thankfully, all she has is a 50/50 chance of being BRCA2 positive. Then, if she is, it means a life-time of close monitoring for breast, ovarian and pancreatic in her and breast, prostate and pancreatic in my son. I hope they are negative and we'll find out soon.

Steelrose and Debbie I appreciate the kind words about my being open about this. Not talking about it just isn't part of my approach to life, so it was easy. Besides, the fact that I knew about my uncle saved my life, since I reacted to the lump quickly and appropriately and probably would have blown it off had I not known about male breast cancer. For all the good breast cancer organizations do, they tend to (quite appropriately) focus on women. That men constitute only one percent of breast cancer cases means that we don't get a lot of notice. Couple that with the embarrassment men might suffer from getting a "woman's cancer," and we have a problem. If I can do for one other guy what knowledge of my uncle's cancer did for me, it's all good.

I have always said that since "modern" cancer treatment usually involves the removal of the offending body part, I prefer having breast cancer over a more "manly" version. In my case, it's pretty much tits-on-a-boar cancer. I had no emotional connection to my man boobs, anyway 

As for my outlook, I've tried to stay upbeat throughout, although I've had my moments. Indeed, I asked my oncologist about problems I was having with depression and she said something really smart. "I can prescribe an anti-depressant," she said. "I even considered getting on anti-depressants a while ago myself ... and then I realized 'I'm an oncologist. All of my patients have cancer! No wonder I get depressed now and then.'"

Her point was a wise one, that depression is natural when you're dealing with something like this and chemical solutions may best be for those who feel depressed without an apparent reason. It's a reality-based depression, which is just part of a human experience. I managed to get through the darkest times without messing with my brain chemistry and I've actually found the whole thing to have some really positive elements to it. My outlook on life has certainly changed ... and for the better, I think. 

1NippledBandit

I am a bit unique in that I was 37 when diagnosed.  I spent a few days coming to terms with my diagnosis before I "went public" on Facebook to all of my friends.  The response I got was the same as you describe.  Some thought I was kidding.  Some thought it was weird.  Some gave emotional support.

I was diagnosed shortly after losing my construction business, my home, and everything else of monitary value.  I have since returned to school to become a nurse.  I figure I might as well embrace my new life among women.  I bring up my cancer quite often and I have "flashed" entire classrooms who thought I was kidding.  For me, I want people to be aware of the possibility.  I was surprised at how many people came up to me with lumps, wanting me to tell them if it was cancer.

I am a bit irreverent about my situation and will constantly make jokes about being "one nippled".  My new nick name is "winky", because now my chest is winking. 

steelrose

It's honestly so refreshing to hear the men speak out on this forum, as it's often very quiet here.

1Nipple... Love your attitude. Flashing your war wound is sure to attract some attention... keep raising awareness!

All the best to everyone...

Rose.   

faithhopenluv

Thank you for this thread, We don't really see it's on a male bc forum until clicking in, so I hope you don't mind some females posts. I'm BRAC2+ and am the only one with breast cancer on either side, and very little cancer on either side. We suspect my dads mother had bc that metastasized to her lungs/lymph system because my dad remembers drs biopsing lymph nodes in her neck. He was 27 at the time and in a daze. I don't think there is as much awareness of the risk for the males in my family - initially my dad and nephews, and then there are several male cousins that I'm not very close to. I want to reach out them, just with a headsup to take anything unusual serious and be aware. I think they'll think I'm nuts since I haven't talked to them in a decade or two, but I wish I had a headsup.

Stanzie

I agree! I think both your attitudes and jokes are truly a great way to handle something very scary and so off the regular path for me. I applaud you and am just very glad you all are doing well and can joke about everything. Anything to get awareness out there is what is important. Its not like we don't know men also have breasts so it should be so odd. I'm very happy you all are doing well!

Charles_Pelkey

Yo Nipple,

I think I got you beat. I had both lopped off, so I never have to wrestle with the question of whether or not to get a nipple ring (not that I would have).

Drop me a PM if you get the chance. I have a small project I am working on and I think you'd be perfect. 

 Faith, no worries about women chiming in. I doubt any of us would even be here if we had objections to women's views on the question of breast cancer. (It's not like we guys can drop by the local bar and ask what our friends are doing about self exams.) At this point we're all in this together.

debbie6122

Im glad to see you both are keeping your humor even with all you have been through. 1bandit- Im going to steal the winky saying from you, my husband will get a kick out ot that! Seriously though i wish the best for both of you!!

Debbie

Charles_Pelkey

A male cousin, from my father's side of the family and whom I'd never met before, reached out to me a couple of weeks ago after reading an article I'd written about my cancer experience. His reaction was terrific and since our mutual uncle had died from breast cancer and I've now tested as BRCA2 positive, he's getting the test. He also told me that if he ever finds a lump, he'll never let his doctor tell him that it's "just a cyst" and not to worry.

Now, that's the kind of reaction I was hoping for. I hope he turns out to be negative, but if he's positive like I am, it's a good thing to know.

1NippledBandit

I have had quite a few people approach me and ask questions about how I found the cancer.  Luckily none of them turned out to have cancer, but I am succeeding in raising awareness.  If the weather is good this year, I plan on running in the Mesa Turkey Trot shirtless with a blue and pink ribbon painted on my back.

Deirdre1

Hi - I'm going to jump in too if that's alright!  My father was dx'ed in the 80's with Stage II breast cancer, he also had a mastectomy -- the nodes were clear.  He was put on Tamoxifen and we were all very concerned when the new rules about Tamoxifen came into play (5 years max).. as he went 11 years on and when they pulled him off (about 1 year later) he was dx'ed with it again.  We thought that Tamoxifen was God's gift and that pulling him off of Tamoxifen was what allowed cancer back into his life, but after much further research, and a dx of early bc myself I got hold of his medical records -- it appears that the Tamoxifen might have been the catalist to a new cancer in his liver! 

It was suggested by my daughter's doc that I have the genetic testing and all the doc's were surprised that I came back BRCA-.. Having a father with bc was a real ride - since there is so little research out there on the subject of what effect male bc has on the female members of the family the doc's allowed themselves to go to the extreme and recommend a bi-lateral mastectomy when I was expecting to only need a lumpectomy!  Unfortunately I allowed their fear to rule my decision.. I had a bi-lateral with immediate reconstruction in the fall of 2007...  

I also appreciate the comedy relief as my father was thus inclined as well!!!  The more you guys come forward the easier it will be on the next generation - men and women alike!  Thanks so much!

Charles_Pelkey

Deirdre1: Of course you're welcome to weigh in on this one. I am sorry that you've had to deal with this for so much of your life.

I agree that it's helpful for men with breast cancer - and their families - to be vocal about the diagnosis. I spent yesterday morning speaking to a nursing class at the university about the diagnosis and treatment (my god they look so young). The dynamic was actually pretty good and if I can keep one health care professional from telling a guy "it's just a cyst, so don't worry" I will be happy.

I am going to speak to my oncologist about the possible ramifications of Tamoxifen next week. I appreciate your willingness to share that with us.

Nipple, I applaud your decision to run without your shirt this year. I'm not sure I'm ready to do that ... not because I am embarrassed about the scars and absence of nipples, but because I'm really out-of-shape these days. Man, I have a ways to go.

Stanzie

I think you guys are amazing! And Nipple - love that you are going to run!

Deirdre1

Charles:  Good luck with the doc!  They tend to NOT want to harm Tamoxifen's reputation so after you speak with your oncologists you might want to do a bit of research on your own.. I ended up avoiding Tamoxifen because of the bi-lateral and that is probably my only positive take away from the surgery - it allowed me to be free of radiation and/or Tamoxifen.. but then I was very early bc (DCIS)... Take care!