Friday update posted Monday 15 July 2019
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
Comments
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@Giovanna_BCNA. Can you access the Invasive lobular carcinoma group any way other than via the link in your newsletter?0
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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.
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Thanks @Giovanna_BCNA.0
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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? Thanks0
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Hi @Chev I will follow this up for you tomorrow & we will let you know when it has been added.
Rosie1 -
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@Giovanna_BCNA - The ILC group won't let me in - permission problem!!0
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Thank youGiovanna_BCNA said:1 -
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