Are you a male diagnosed with Breast Cancer on the online forum

Thanks for the information @Pauline_BCNA, @"Chester80$$"
 and @traveltext
 I am really looking forward to connecting via Summit and learning to be proactive with this. 

Thank you @"Chester80$$" and @traveltext. We make a great team! 

Largely due to commissioning Pauline to consult with men with breast cancer, thoroughly research the topic, and draw up recommendations and policy changes at BCNA, this breast cancer charity has become a world leader in male breast cancer advocacy. 

I believe now that the next goal should be to further raise awareness that men get this disease and reduce the stigma of it being an unmanly disease. Then, with a support framework in place, men will come to use the BCNA services and products to help them through their treatments and support them with information, along with peer group advice, counselling, and friendship.

I am really excited to be invited, along with @Chester80$$, to the Summit this year and hope to leverage the talent and goodwill of the BCNA family to spread the word on men and BC.

Great job @Pauline_BCNA 
you have been a beacon of hope and support and we couldn't have done it without you  <3

It is so wonderful to see your support and encouragement for men affected by breast cancer, @"Soldier Crab"

I'm on the policy team here at BCNA, and helping to improve support, information and advocacy for men diagnosed with breast cancer has been a very important priority in my work here. I have had the privilege of running a consultation project on male breast cancer, working closely with a small but amazing group of men over the past 12 months, including @"Chester80$$" and @traveltext.Talking to these men has helped us all get a better understanding of the barriers that men can face to being diagnosed early, getting the right information and support, and of course it can be really hard to feel included and represented when there is a lot of 'pink' out there in the breast cancer space! Over the past year, there have been some really exciting and encouraging outcomes from the work we've been doing together with @"Chester80$$" @traveltext and other men. The highlights include:

 ·  The final report and executive summary from the consultation project on male breast cancer has been published. The report shares findings from our work with men, along with a set of recommendations for action that BCNA and the broader community can take to improve outcomes for men. This report is now available for download on our website here: https://www.bcna.org.au/about-us/advocacy/research-reports/#menwithbc

 · The content of our breast cancer in men information page on BCNA's website has been updated, using information and feedback from the project we carried out last year.

 ·One of the main findings of last year's consultation is that men need information that is tailored to the specific needs and issues that they experience after a diagnosis, including the stigma of having what is considered to be a ‘woman’s disease’ and feeling isolated or alone. As a result of this project, we have made some important changes to the information we now send to men diagnosed with early breast cancer. Now men who order a My Journey Kit (or whose clinician orders it for them) will also receive a personalised introductory letter for men from our CEO; a copy of Professor John Boyages’ book Male Breast Cancer: Taking Control, and the latest version of BCNA’s booklet Men Get Breast Cancer Too. The inspiration for this change to our MJK for men was feedback from a newly diagnosed man and his daughter, who felt that having access to information specifically for men was crucial to help men feel supported and less alone. When we made these changes, we received some very heartening feedback from the man who had inspired us. These are the times when you know that together we are all helping to make a very tangible difference!

 · The new edition of Hope & Hurdles for Australians diagnosed with metastatic breast cancer is now available for order, and includes a chapter specifically addressing the needs and concerns of men diagnosed with metastatic disease.

 · Our Men Get Breast Cancer Too booklet has been updated and revised to reflect the latest knowledge on male breast cancer, with some new content updated to reflect the findings from our consultation.

 · We are developing a BCNA position statement on the needs of men diagnosed with breast cancer.

 · @"Chester80$$" and @traveltext will be participating in this year’s BCNA National Summit event, which aims to develop skills, knowledge and networks among a diverse range of consumer advocates who support breast cancer awareness and advocacy in their communities. This will be a great opportunity for men to foster connections with our large network of community liaisons and advocates, and to identify new collaborative opportunities and learnings.

 ·         A poster presentation from last year’s Clinical Oncology Society of Australia conference, which showcases findings from the consultation, should be available online shortly as a downloadable pdf.

 · Last year, we made some inroads into raising awareness of male breast cancer, with some stories featured here from some of the men I’ve worked with:

·         The Men Get Breast Cancer Too story by Ron Gordon

·         Rob Fincher’s video story, discussing his experience of metastatic breast cancer

 Last year’s October social media campaign, breast cancer doesn’t discriminate, has been hugely successful. Having Rob Fincher’s story as part of this campaign has been helpful in raising awareness that men get breast cancer too.

 ·         A number of newly diagnosed men are ordering our resources and requesting peer support, and I am thrilled to be able to facilitate informal peer support networks between newly diagnosed men and a number of the men we have active in our membership, who are tremendous in offering their time and skills to peer support. I will continue to help in facilitating this, as our member services team now refers men who are interested in peer support and further information to me.

 ·  Finally, I will be an ongoing contact and ‘go-to’ for male breast cancer related issues and advocacy at BCNA, and I’m very excited about that!

What we are now looking at is how to encourage more men to reach out for support if they need it.We can certainly work on encouraging breast care nurses and other clinicians to be more aware of the specific information and support needs of men, and to give them access to the resources we have available, which would bring more men into our membership. We can also continue to advocate for greater awareness, and challenge stigma through our campaigns and events and sharing of stories. Given the low numbers of men nationally affected by breast cancer and the broad geographical spread, as Cosette_BCNA highlights, there are challenges in bringing men together. One of the best ways is to raise awareness, encourage men who are advocates to go out and spread the message in their communities that men can get breast cancer too, and help the public in general to understand that breast cancer in men is not something to be ashamed of. If men are not accessing our resources or joining our membership, it can also be because some men opt not to, for their own reasons. We know that many men, due to continuing stigma, are not even talking to their friends or relatives about their diagnosis. So there is still a lot of work to do in challenging that stigma and helping men to feel more comfortable to talk about their experiences.

I am really excited for @"Chester80$$" and @traveltext to be going to Summit this year. And I hope that this gets more conversations going, and builds new connections within the BCNA community.

If you have any queries or would like to chat about anything to do with breast cancer in men, please feel free to email me: [email protected]

Best,
Dr Pauline McLoughlin
Senior Policy Officer

Soldier Crab said:

I have never seen that video @Cosette_BCNA
 where does it play on TV ?  in Cinemas? 
sorry I am not a big TV fan so I don't watch very often and often it is stuff I record then fast forward through ads. 

BCNA creates different videos for different purposes. Most of them are presented at different events and to different audiences. They also make their way around on social media. One reason you may not have seen the video above is because it was targeted at people that are not familiar with BCNA. You already know who we are  ;) But if you want to see more BCNA videos, check out our YouTube channel.

Soldier Crab said:

Some thoughts are can BCNA run a Information forum maybe where it is Only for Men and their supporters with BC ? 

All the forums are women based that I know of.... 

Anyone can come to a BCNA information forum. The pathology of breast cancer for both women and men is very similar and much of the information applies to both. One of the reasons you primarily see women at these events is just sheer numbers. In 2017, an estimated 17,730 Australians will be diagnosed with breast cancer – 17,586 women and 144 men. Take 144 men, disperse them throughout the country, and add to that the stigma of having what is often thought of as a "woman's disease". We also have to accept that some men (and women) don't want to be reached. Given these and any other reasons why a person may not be able to or want to attend, it's tough to get diagnosed men at the forums. 

Will be great to connect at Summit @traveltext
 I am looking forward to being more confident in supporting others who are going thru or have been thru BC. 

Sometimes we whittle away at something thinking it has no effect then wham it all falls into place, keep the passion to promote Male BC ..... I was thinking a Group called "Blokes only" might do that trick.....

I'm one of the few men on this forum. I'll be at the BCNA Summitt with Chester80$$ next month. I'm one of those guys with breast cancer and prostate cancer, so looking to learn more about the connection between the two diseases. Hanving had both a mastectomy and a prostatectomy, I have decided that BC is a worse experience than PC. 

Anyway, re men joining this forum, I'm not sure it will happen in a hurry. No doubt you are aware of Breastcancerorg.org the US bc blog. Well, I've been virtually the only guy posting there for the past couple of years. Number of men diagnosed annually in the US: 2600. Number of men diagnosed annually in Australia. Get my point?

in any case, I'm keen to promote the MaleBC cause as best I can. 

Will do...looking forward to it also

  :)

@"Chester80$$"
 wow I was excited for Summit now I am more excited. 

Please remember to come find me at Summit :D would love to connect, with you and @traveltext during summit.
What streams are you doing ? 

I just saw a flash of this "Pink Ladies with Blue ties" ...... 
That sure would get our communities talking....

I am part of a local group called Bathurst Bosom Buddies.... we have monthly meetings where we have guest speakers and go on quarterly outings, we try to make our group  both inviting and  more than just BC as some of our members are newly diagnosed and some are survivors 30+ years down the track. 

Thanks for being open within the community here and letting us become more inclusive of men in the General forums


Alice