Friday update posted Monday 15 July 2019

Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,208


Hello everyone,

Welcome to our community update.  I meant to post this Friday but was waiting on a couple of things to come through prior to posting, so just to confuse you all here is Friday’s update on Monday 15 July 2019!

Hoping this newsletter finds you all travelling as well as can be expected wherever you are at in your treatment plan or completion of treatment.  It is so heartening to read some of the great connections made online and the wonderful peer support that is being offered by our online community to new members.  As @Kelhart said in her post titled “Starting chemotherapy tomorrow” once her first chemotherapy treatment was ticked off her list,

Hey guys, just home and showered and straight in bed. Feeling well although am extremely tired, hoping to sleep well. Thanks to you all it was soooo not scary the nurses are wonderful & make it so easy. Thanks again for the support!”

Great to hear that your first chemotherapy treatment is done and dusted @Kelhart!  It must be a huge relief to be on the other side, take care and rest up over the next week.

Another post from @Canisha, in the thread titled “Liver and brain mets”.  Canisha was recently diagnosed with brain metastasis and feeling very frightened.  As @kitkatb said

“Zoffiel was true in what she said "We don't know what to say”  but we are here for you anytime you need to vent, have a bit of a rant or just need a virtual hug.  We all get cancer and sometimes it is hard to talk to friends and family about how you really feel sometimes but we get it.  Xo”

@Canisha, I’m so glad that all went well with your recent radiation treatment and read in your last post that you are currently having chemotherapy.  Wishing you all the very best with your treatment.  Don’t hesitate to call our helpline on 1800 500 258 to speak with a cancer nurse for information and support.


New Invasive Lobular Cancer group

I mentioned in the last Friday update that we were planning to start a new online group.  Well the group is now up and running and we have called it Invasive Lobular Cancer (ILC).  The recent online discussions highlighted the need for support and more evidence based information regarding invasive lobular cancer including a defined and clear treatment pathway. 

According to US figures, about 10% of all invasive breast cancers are invasive lobular carcinomas.  This group has been set up as a public group, available to all who are diagnosed with lobular cancer to connect with others for peer support and to share experiences and information. Please check it out at https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

Gentle reminder

Can I remind our community members to not use your real name when signing off on posts.  Instead use your online name.  To protect your privacy, we encourage you not to use your real name or any identifying details as the main discussion forum is not private and posts can come up in general google searches.



Community highlights


1. Fretting Thread commenced by @kmakm

“It's the middle of the night and I'm having a quiet fret about rib pain”.  This thread highlights how tricky it can be to work out what might be causing some of the other general aches and pains that happen post breast cancer.  Great support provided by our community members and a great outcome for @kmakm

2. Heartbroken, but unbroken Thread commenced by @strongtogether

“We have just been hit with a TNBC diagnosis.  My wife is 44 and we have two young kids. Our world's been turned upside down. There's so much raw emotion and the sense of grief that we all know all too well.  It’s been 12 days since diagnosis. She had a mastectomy on Wednesday, and a couple of lymph nodes removed.   Today we heard that while the mastectomy went well, the borders are clear etc., one of the two lymph nodes had an 8 mm cancer. We are devastated.  She's everything I wish I could be and I wish I could take her place, but I know I can't.  We are positive and we are hopeful. She's a fighter, she is strong, and she is healthy and young.  Love to you all.”

It does remind us all that it can be very tough for partners in the early stages of a breast cancer diagnosis especially with so many unknowns.  I was thrilled to read that your wife’s PET scan was clear and that you are both feeling better now that there is a clear treatment plan.  All the very best with chemotherapy.

3.  Weekend trivia Great light-hearted thread commenced by @Romla, have a read if you haven’t already done so!

“Please explain.  Why do cafes/restaurants go to considerable lengths to make a great coffee using freshly ground beans, an espresso machine and a talented barista but when asked for tea usually just provide boiling water sometimes in a pot and a teabag? (and for the same price).  We seem to have forgotten the great taste of a properly brewed tea made in a teapot with loose leaf tea. As a tea drinker I feel discriminated against .PS I use a teabag at times too but expect better when out.” 

 

Community news


Medicinal Cannabis

There has recently been quite a bit of discussion within our online community about medicinal cannabis and cannabis use in general for a variety of different ailments.  As far as these discussions are concerned we do ask that you keep the discussions to the use of medicinal cannabis and what is currently legal.   We encourage anyone thinking of accessing medicinal cannabis to speak with their GP or treating specialist.  There is a very rigorous process to follow, including referral, meeting an eligibility criteria, complex regulations and gaining access to the medication once all other avenues have been exhausted.

According to the Cancer Council Australia COSA guidelines,

There is no current evidence that cannabis or cannabinoids are effective at inhibiting tumour growth or to treat or cure cancer in humans. In addition, there is no current evidence that cannabis or cannabinoids reduce risk or prevent cancer occurrence or promote good health

There is some evidence that cannabis and cannabinoids in controlled delivery may have a benefit to cancer patients where conventional treatments are unsuccessful in providing relief in the following areas:

·  for relieving nausea and vomiting in patients undergoing chemotherapy;

·  as an adjunctive analgesic in patients with moderate to severe pain; and/or

·  as an appetite stimulant for patients experiencing weight loss and muscle wasting.

For more information

Therapeutic Goods Administration

Cancer Council Australia Medical use of cannabis

 

Textured breast implants, an update

Australia authorities are a step closer to banning some textured breast implants.  Australia’s medical device regulator, the Therapeutic Goods Administration (TGA), is proposing to suspend, cancel and recall some textured breast implants from the Australian market. The move follows an extensive review conducted by the TGA after evidence from around the world, including Australia, showed apparent links between textured breast implants and a rare form of blood cancer, Anaplastic Large Cell Lymphoma (ALCL).  

The TGA will make a final decision on whether to ban the implants after 24 July, giving breast implant manufacturers and distributors an opportunity to respond to the review findings. For more information

 

Podcast

A new episode of our podcast Upfront About Breast Cancer is live! This episode  explores metastatic breast cancer with oncologist Professor Fran Boyle and Georgie Fyfe-Jamieson, who was diagnosed with metastatic disease in 2017. To hear more about Georgie's experiences living with metastatic breast cancer and Fran explaining how oncologists determine the best treatment options for each person, search "Upfront About Breast Cancer" on Apple Podcasts and Spotify, or click this link to listen on the BCNA website:


This week’s reflective quote

“The truth is, there is just one moment, one after the next.  That’s all there is, anything else is an idea”

 Headspace

 

Have a great week everyone, stay warm!

Regards Giovanna and the moderation team

 


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Comments

  • Patti JPatti J Member Posts: 581
    @Giovanna_BCNA. Can you access the Invasive lobular carcinoma group any way other than via the link in your newsletter?
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,208
    Hello @Patti J
    Yes you can access the group by going to the 'Groups' tab in the top right had corner.
    Choose the invasive lobular group and click on the JOIN button.
  • Patti JPatti J Member Posts: 581
    Thanks @Giovanna_BCNA.
  • ChevChev MelbourneMember Posts: 55
    As I am Deaf, I was thrilled to see that transcripts were available for some of the upfront podcast series. However episode 4 does not have a transcript available.  Any chance this will be available soon?  Thanks
  • Rosie_BCNARosie_BCNA Administrator, Staff, Member, Moderator Posts: 202
    Hi @Chev I will follow this up for you tomorrow & we will let you know when it has been added. 
    Rosie 
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,208
    Hello @Chev @Rosie_BCNA
    The transcript for episode 4 is now available on the website.


  • arpiearpie Mid North Coast, NSWMember Posts: 3,116
    @Giovanna_BCNA - The ILC group won't let me in - permission problem!!
  • ChevChev MelbourneMember Posts: 55
    Hello @Chev @Rosie_BCNA
    The transcript for episode 4 is now available on the website.


    Thank you
  • Riki_BCNARiki_BCNA Administrator, Staff, Member, Moderator Posts: 261
    Hi @arpie I have sent you another invite to the ILC group
  • arpiearpie Mid North Coast, NSWMember Posts: 3,116
    Still No joy at joining, @Riki_BCNA

    I can see the titles of the discussions but not access them



  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,208
    Hello @arpie,
    Looking into this now
    cheers Giovanna
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