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

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SoldierCrab
SoldierCrab Member Posts: 3,445 ✭
in General discussion
Are you a male diagnosed with Breast Cancer on the online forum? 
  • Do you need or want a specific group within the forum to be able to discuss male related issues from your diagnosis or treatment? 
  • Do you feel comfortable discussing on the general forum with the ladies who at this stage dominate (in a nice way) the forum? 
  • How can we on the Forum make men feel included and heard within the forums? 
I am sure there are many other emotions for a male diagnosed with BC 
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  • Cosette
    Cosette Member Posts: 637 ✭
    edited February 2017
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    @Soldier Crab, you are such a thoughtful person.

    We do have a couple of men in the online network and perhaps we have more men quietly reading. In the past, we did have an online network group for men diagnosed with breast cancer, but it was not active, for a number of reasons that we understand. 

    We are always looking for ways to improve our support for men. We definitely considered how men respond to the "ocean of pink" when we were looking at designing this version of the forum. @Pauline_BCNA has done a lot of work in this space and consulted with some of the men in our community. As a result, we have made changes to the information we send to men diagnosed with breast cancer and we actively look for ways to be more inclusive of men. For example, you might have seen @Chester80$$ in our videos, like this one:

    https://youtu.be/zUxs6av4ul8

    While there's been slight interest in the idea of an online network group for men diagnosed, there isn't anyone available to lead it. However, if that changes, then we're definitely open to creating one.
  • Chester80$
    Chester80$ Member, Dragonfly Posts: 13 ✭
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    Prior to the launch of the new website there was an MBC forum with only a couple of active men and low activity. Some of the MBC advocates within the BCNA family are thinking about some strategies to capture the ~150 diagnosed each year into a robust cohort but there are numerous challenges.
    Having MBC within a sea of pink can be difficult for men, many of whom feel their masculinity/virility has taken a big hit and they don't really want to talk about it. BCNA have been hugely supportive and we are not giving up and having the forum might help, but as they say "you can lead a horse to water but you can't make it drink"
    If others want to offer suggestions and want to contribute to the conversation please join in.
    Rob

  • socoda
    socoda Member Posts: 1,767 ✭
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    How about for a start making the name of the men's forum more masculine such as Men's Chest Cancer. Might appeal more? What do others think?
  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    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. 


  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    hi @Chester80$$
     
    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.... 

    I just feel that you blokes need support and I am very inclusive orientated... 

    Blokes with Breast Cancer ? would be more masculine...  Dudes fighting BC ? 

    I am completely ignorant on BC in men tell me is it more prominent in a specific age group ? Do you suffer the same types as women or are they different again ? 

    How do we learn to promote it for men to be self aware of their our Breasts...

    I hope I am not too overwhelming Rob, I just want to understand from a male perspective and reach out being inclusive. 

    Alice aka Soldier Crab 

  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    What about this .... Men with Breast Cancer- Taking Control,
  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
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    There is evidence of a link between genetics of prostate cancer and breast cancer too. I am first hand evidence as my dad is undergoing mets prostate cancer treatment and its the same docetaxel chemo as I had for breast cancer last year, although I also had cyclophosphamide as well. Dad also gets the hot flushes that I do lol. https://www.sciencedaily.com/releases/2004/05/040503054534.htm
  • Chester80$
    Chester80$ Member, Dragonfly Posts: 13 ✭
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    Hi @Soldier Crab @socoda @Pauline_BCNA @traveltext
    The messages of inclusiveness are welcomed and reassuring
    For those wanting to know more about MBC there are some fantastic resources developed recently by @Pauline_BCNA in consultation with MBC advocates. BCNA have a plan that will go a long way to answering your concerns and providing the support we need. Personally I have been very fortunate to be part of the process and included in some ground breaking sessions. Myself and @traveltext are attending the upcoming BCNA Summit as MBC representatives and it will a great opportunity to build relationships and continue to get the message out that breast cancer doesn't discriminate...it's more than 1 in 8. 
    The biggest challenge is improving education and awareness in the community to ensure Men understand they can be affected, what to look out for, practice good self examination techniques, and if concerned seek medical review asap. 
    Unfortunately the prevelance of pink only reinforces the myth that it is a female disease and we have been advocating for a splash of blue to be added somewhere that might provide the catalyst that starts a conversation in the community like "what is that splash of blue all about?"
    By and large MBC diagnoses and treatments are currently the same for men as they are for women, but recent overseas research has indicated there are some differences for MBC and we are hopeful that future treatments may be adapted to improve outcomes.
    If you check out the BCNA website there is a great deal of updated information on MBC under the heading "Understanding breast cancer" link.
    Thanks again for your support
    Rob
  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    yes my geneticist has said that also.... I have a strong family background of Prostrate cancers in both sides .... but I am the first and only at this stage female with BC

  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    @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 
  • Chester80$
    Chester80$ Member, Dragonfly Posts: 13 ✭
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    Will do...looking forward to it also

      :)
  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
    edited February 2017
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    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.....
  • Cosette
    Cosette Member Posts: 637 ✭
    edited February 2017
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    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. 
  • Pauline_BCNA
    Pauline_BCNA Member Posts: 14 ✭
    edited February 2017
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    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: pmcloughlin@bcna.org.au

    Best,
    Dr Pauline McLoughlin
    Senior Policy Officer


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