Male Breast Cancer

[alicem]

Hi everyone, I have been asked by my church to speak during Sunday School on Father's Day. I will be leading the Adult Class discussion on - - Breast Cancer: A Male AND Female health issue. I think I've got the female side covered but I need help with the male aspect. I plan on hitting the internet in my usual fashion but I know the wealth of information you all have is much better. Especially your first hand knowledge, Marie, with what Ed is going through.

Please feel free to e-mail me personally with any stories you might want to share. alicemueller@gmail.com

Much thanks ahead of time to you all.

Alice

[Believe51]

Alice, I would be honored to help you out and I am truely touched with your mission. When we first found out about Ed, I started first with the John W Nick Foundation for Male Breast Cancer. I personally talked to Nancy Nick, the Founder and President; she was inspiring and placed hope and light into the darkest of days. She is an amazing woman on a mission just like us all and the website is informative. Her foundation does attend San Antonio too and this is vital for our men and boys. Dr Susan Love's website had the wrong male breast cancer statistics and I contacted her, within 24 hours her website was adjusted. I was rather impressed with these actions, even though there is not much on MBC. Many sites do not have the updated or correct information. When doing an article for our local paper, a man from the ACS actually quoted the wrong statistics and another piece of important info. Just be careful where you tread.

To be honest and knowing what I know now....I would search right here, Lani is my Santa Claus and has been a great asset to this site with her constant presents. She has also been a wonderful gift towards my ammo for Mighty Oak's fight. Also, search the San Antonio Breast Cancer Symposium archives and watch what you can find (Oh La La!). Listen to me ramble....I will talk to you personally, atleast you will be able to get a word in edgewise (wink)!

I'll pm you before I sign off tonight.>>Believe51

[pattyz]

Alice,

Marie obviously has the low down on MaleBC.

My Lyle, at age 70, was dx'd w/Stage IIIb bc ER+ PR+ two yrs ago this month. Same stage as me back in Jan. 2000. He is not Her2+ however.

My onc, now Lyle's too ofcourse, started him on TAC to shrink the tumor. It had totally involved his nipple (size of large red grape with leakage and bleeding) and was very close to Lyle's chest wall. He did not handle the SE's well at all. One week lost 14 lbs. The shot of Neulasta 24 hrs after ea. chemo was part of his schedule. Lyle was my onc's third male patient, the other two being older.

From my research, we dropped the A/C after 4 rounds. Spread the Taxotere over another 4 rather than 2 with dosage in halves. His response was not complete but very good. Nipple shrunk dramatically, no more leakage - and size of tumor inside also smaller.

At time of surgery we insisted on the sentinal node route - all good. We also insisted on no rads if there were nice big clear margins. There were! He was 70 afterall and still doing physically demanding work.

Tamoxifen since then. He has luckily no side effects. Checkups good. He gained his weight back, too. He was bald all over and joked about that to anyone...in a lot of 'off color' ways. His worst time was the week following the chemo. All the 'normal' SE's.

He always had my back during my dx's, but was/is much more in tune what it was all about. And I was there for him from my own exp.

Lyle was helped through this by:

*keeping some sense of humor
*schmoozing with the nurses
*having someone that understood what he was going through
*someone who could give him accurate info
*staying open about having male bc
*keeping his attitude level, with an upward turn
*and ofcourse the support of his family and friends

I apologize if this is not the info you were looking for. And probably too long...

pattyz

[alicem]

Thank you for all the great info. Marie, you have given me a place to start doing my research. I'll be calling soon.

Patty, your Lyle sounds like a very special man and husband. I very much want to hear what you have to say. For me, it is the personal stories of this disease that mean so much to me. What you have just written has touched me very deeply. I hope you don't mind if I share your story with others.

[pattyz]

Alice,

Thank you so much for your most kind thoughts. We would not mind at all, sharing any part of Lyle's experience w/ male bc.

He in fact feels a bit 'special' being in such a minority. His ego remains healthy! At one point he actually told his female surgeon he would not 'charge' her for the experience on her first male bc patient! Oh yes, he is quite the special guy!

Warm wishes and best of luck to you, Alice.

pattyz

[Believe51]

Patty, your list of how Lyle made it through was super but I do believe you deserve your own line on that list. I am so happy to hear how another male has fought back to claim his life. You made my heart all warm and fuzzy when reading this. Thanks for posting this for us to see today and for many days to come. Please gently kiss Lyle today and whisper in his ears just how happy and proud I am for him and for you!!>>Believe51

[pattyz]

Thank you dear,

that meant alot to me. And Lyle really liked his own message and kisses ofcourse

He just had another opportunity to 'have my back'. Took me to ER on Sunday, me crying with over the top headache, much vomiting, then freezing cold. Admitted and released on Tues. Lots of trips to hosp. for him. etc etc. But, that's part of who he is, too.

I know for sure that you and your man are the same. So, gentle hugs and kisses to you two as well. XOXOXOX patty

[Believe51]

UhUumm! When Sunday comes and you are up there speaking, I will be praying for you. You will find it easy to talk about things that unfortunately, you live. You shall stand tall as you speak of this taboo, you will educate and you certainly will advocate total awareness. You will teach both men and woman not to be embarassed but to seek help. You will spread inspiration and hope to many who need it now.

I am so proud of you for doing this because it is something not everyone can do, they do not 'live' this disease. Sunday you will stand up against cancer in a way only those whom live it can share. So when you are up there know this is yet another brave and unselfish thing that will save lives. How wonderful you are. Thank you for all the men and boys who will hopefully give thanks and will never have to use this information.>>Believe51

PS: How blessed we are to have you here as part of the family!

[alicem]

Marie,

Thank you so much for your kind words. I hope you realize that you will be resting on my shoulder as I speak. You and all the other special men and women will be in my heart as well.

I encourage all of you that read this to please honor your fathers, husbands, brothers, sons on this day by spreading the news in your own way that this is NOT just a woman's disease.

Happy Father's Day Everyone!

Alice

[Believe51]

Alice, good thing you have broad shoulders then (lol). Know I will be with you cheering you on today. Let us know how it went.>>Believe51

[Believe51]

Well.........how did it go?? Thought and prayed for you today.>>Believe51

[alicem]

It went very well, thank you. Everyone was very receptive and responsive. I had one man come up to me later to tell me that he had lost a colleague recently to Male BC. He was in his fifities. One thing that I wanted to ask you about . . . are most men diagnosed with advanced as opposed to early stage BC? I shared Ed's story, as well as Lyle's. Everyone was touched. It was a special moment for me. There are now many friends of mine praying for you and the Mighty Oak. I also had several men tell me that they had a family history of BC, so I hope I raised the awareness bar a little bit.

Additionally I spoke about a local bike ride fundraiser [for Breast Cancer support groups here in Central Texas] that I am participating in this October. The man who lost his friend is planning on joining our team as well as some of his friends. Overall it was a really great day. By the way, if you want to see a picture of me and my bald head, you can visit my personal page at www.mammajammaride.org and search for Alice Mueller

On a lighter note, even though it's been 5 months since I have been wearing my wig, I still had a couple of women come up to me before church and comment on how much they liked my hair cut!!!!!!!!!!!!

Finally I have to plead Chemo Brain here, Marie. I actually came to the site this afternoon to let you know how things went. I logged on, decided to read the new posts first, and then proceeded to forget all about why I showed up here in the first place - so I logged off! Thanks for the prayers, and the nudge - my brain needed it.

[Believe51]

Alice, great job!!

More men are getting diagnosed each year, the numbers are rising steadily.....but, they are getting diagnosed at an earlier stage. I have worked hard to pass the low-down on male breast cancer since his journey began. I am so happy for the men who are finding out in time to really make a difference in their lives.

Ed, well he is a different story, he has the deadliest form of breast cancer and you could not even add anything to it to make it any worse. Inflammatory breast cancer usually gets diagnosed in the later stages, mostly stage IIIb or IV. Doctors have reported that this cancer can turn from stage to stage, all the way to stage IV in a matter of weeks for some.

Awareness plays a large role in early and proper diagnosis for all breast cancers, but especially male and inflammatory. Times are changing and these problems are getting better. Keep doing what you do because that is where it starts.>>Believe51

[duga35]

Alicem, I think what you are doing is great. If you need anymore input I would be glad to help as well.

You asked if most men are diagnosed at a late stage? I was 39 when I was diagnosed at stage 1. I was having a discharge out my nipple. I pretty much knew deep down that I had cancer, but I kept trying to ignore it, hoping it would just go away. I didn't have time for cancer. Too busy working, trying to raise a family, etc etc. I can imagine many men would feel the same way. Dunno.

But, thankfully my wife finally made me see a doc. Had a mammo and ultrasound done on one day, saw a surgeon the next evening, and I was in surgery the next morning.

[alicem]

Doug,

Thanks so much. I KNEW there was someone else here dealing with male bc, but my chemo brain just couldn't think of it.

My talk at our church was in honor of Father's Day, but I don't want the info to end there. I am trying to figure out where to go from here. Like I mentioned above, I am participating in a biking fundraiser for 10 local non-profit organizations here in central Texas. I have been asked by the executive director to tell my story as time for the ride gets closer (it is in October). I think this is a great way to get the word out that this is not just a woman's disease.

What I think really helps is having personal stories to share, kind of like a testimonial of what you all have gone through, and what you would like others to know. If you have the time to do that within the next weeks or couple of months, and do not have a problem sharing your story, that would be a big help.

Thanks,
Alice

[duga35]

Sure, I can do that. It may take me a little bit of time to gather all of my thoughts though. I have to warn you that I do tend to ramble a bit I will prolly send it your personal email, because I guess I'm a little apprehensive of talking about certain things!