MBC Brain Mets

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 🤗💖

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 . 

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 💕⚘💕

Ok just thought that might of been another support area for you. 

Thanks but No. ER+ HER2-  

@Judy_M can I ask what your original BC was ? if triple negative there is a facebook group for stage 4 triple neg... 

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

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 x

Sending virtual hugs 🤗🤗🤗🤗... I hope you find support so you dont feel so isolated in your journey. X

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_BCNA