Why not join the Living with metastatic private group? Access group via the link here.
MBC Brain Mets
Judy_M
Member Posts: 15 ✭
Hi. I’ve recently been diagnosed with extensive small brain mets, additional to mets in multiple other organs and bones. I’m currently almost half way through whole brain radiotherapy. I’d like to connect with others who are going through, or have experienced, WBRT. I feel a bit isolated in this, as no one in our local MBC support group has experience of brain mets. Thanks, Judy
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Comments
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Big hugs 🌻0
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Thanks Cath. And to you 🤗🌼1
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Hi @Judy_M
The living with metastatic group can be found here https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer. This is a private group so you will need to apply and one of the BCNA mods will accept you. If you have any questions, please let me know.
@Mez_BCNA1 -
Sending virtual hugs 🤗🤗🤗🤗... I hope you find support so you dont feel so isolated in your journey. X1
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thank you 🙏
I have a great support network but no one close by who’s had experience of brain mets, apart from a couple here and on Facebook. I wonder how rare brain mets are? Best wishes to you Chevvy x1 -
Sadly, @Judy_M - it is not all that rare.
I've read that up to 20% of those with mets may develop brain mets.
That is great that you have good family & friend support xx
Where abouts are you (roughly - town/city) .... members may know of local services that are available to you (You can add your town to your profile.)
take care xx
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@Judy_M can I ask what your original BC was ? if triple negative there is a facebook group for stage 4 triple neg...0
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Thanks but No. ER+ HER2-2
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Ok just thought that might of been another support area for you.1
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Hi Judy _ M,
I have brain metastis. ( and lung/ bone) . It is not easy to deal with especially the roller coaster of emotions and coping with the side effects of treatment (e.g brain radiotherapy and brain surgery ) I wouldn't wish it on anybody, but I also want to let you know the advances in treatment are incredible. I am very grateful to my neurosurgeon and oncology specialists for their expertise and skills.
I have also felt the isolation you describe after finding out my metastatic breast cancer spead to my brain this year.
I am about to start another round of brain radiotherapy for new growths in my brain .. but this time I do not feel as worried. I still find it hard to deal with but I am trying not to focus on the " what if's" so much now and just try to make the best of each day ( especially the reprieve times inbetween treatments )
An online facebook support group I have really helpful :is called "Stage 4 Cancer Brain mets PATIENTS ONLY " . If you use Facebook you can search for this group and apply to join it. It has been great for me to find this group of people as they all hsve the same diagnosis and understand some of the fears, uncertainties and treatments that come with having brain mets .
All the best Judy_M 💕⚘💕
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Also Judy_M .. I forgot to say that I would have loved to catch up with anyone with brain mets. Meeting up in person with someone going through similar experince would be great , but I don't know of anyone near me , so finding that online group through Facebook has been supportive for me .0
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Hi and thank you for your kind and reassuring words. I’ll join the Facebook group and find you there. I see you’re in Adelaide so no chance of us meeting up, as I’m in Victoria on the Bellarine peninsula. I agree that meeting in person can make a huge difference. One of our local MBC support group members is returning home to Adelaide later this year. (No brain mets for her at this stage). Warmest hugs. Catch you on FB 🤗💖1
