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Secondary breast cancer - brain

Linda MLinda M Member Posts: 8
edited September 2016 in Community news and events

Love to hear from anyone who has secondary on the brain.  Radio surgery suggested first rather than surgery.  About to start 6 treatments at Alfred Hospital in Melbourne.

Love to hear from anyone who has had radio to brain and/or surgery.

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Comments

  • Daina_BCNADaina_BCNA Member Posts: 892
    edited March 2015

    Hi Linda M,

    Glad you have made a blog post and thanks for telling your story.

    There is an online group for Women Living with Advanced Breast cancer that you might be interested in. You can find it here: http://www.bcna.org.au/group/4218.  You could also use the site's search function to find others posting about advanced or secondary breast cancer, brain mets (see above the main navigation bar where it says "start your search here" -- when the results page comes up, if you look at the right side of the page, you'll see if each result is a blog post, page, group, etc.).

    Hope that helps -- if you need a hand with finding your way around let me know.

    Daina

  • Daina_BCNADaina_BCNA Member Posts: 892
    edited March 2015

    Hi Linda M,

    Glad you have made a blog post and thanks for telling your story.

    There is an online group for Women Living with Advanced Breast cancer that you might be interested in. You can find it here: http://www.bcna.org.au/group/4218.  You could also use the site's search function to find others posting about advanced or secondary breast cancer, brain mets (see above the main navigation bar where it says "start your search here" -- when the results page comes up, if you look at the right side of the page, you'll see if each result is a blog post, page, group, etc.).

    Hope that helps -- if you need a hand with finding your way around let me know.

    Daina

  • Samantha CunningtonSamantha Cunnington Member Posts: 245
    edited March 2015

    Hi Linda,

    feel free to read my story/check my profile for all updates on my situation. Briefly tho, my original diagnosis was in dec 2009, secondary discovered jan 2010, chemo and herceptin treatment had been successful up until june 2011 when migraine issues led us to having a brain CT, showing several brain mets had developed. I was sent off (after a few days of stabalising the head pain) to freemasons in melb for 10 'zaps' of whole brain radiotherapy-no suggestion of surgery at all. This was followed up with a regime of chemo pills which i am currently still treating with. I imagine we just keep doing this until it stops working or the body needs a rest from them (if side effects get too severe). I have just had a follow up MRI showing we have had huge success-larger tumour masses oringinally measuring 1.8cm are now about 1cm and some smaller tumours can't be seen-so a great result in just 3 months!

    Good luck with your treatment-happy to chat anytime

    Sam  :)  xx

  • Samantha CunningtonSamantha Cunnington Member Posts: 245
    edited March 2015

    Hi Linda,

    feel free to read my story/check my profile for all updates on my situation. Briefly tho, my original diagnosis was in dec 2009, secondary discovered jan 2010, chemo and herceptin treatment had been successful up until june 2011 when migraine issues led us to having a brain CT, showing several brain mets had developed. I was sent off (after a few days of stabalising the head pain) to freemasons in melb for 10 'zaps' of whole brain radiotherapy-no suggestion of surgery at all. This was followed up with a regime of chemo pills which i am currently still treating with. I imagine we just keep doing this until it stops working or the body needs a rest from them (if side effects get too severe). I have just had a follow up MRI showing we have had huge success-larger tumour masses oringinally measuring 1.8cm are now about 1cm and some smaller tumours can't be seen-so a great result in just 3 months!

    Good luck with your treatment-happy to chat anytime

    Sam  :)  xx

  • Linda MLinda M Member Posts: 8
    edited March 2015

    Hi Sam,

    Thanks for personally replying to my blog, just want to talk to someone who has had similar diagnosis to relate to, I know every single story in different.

    I will follow your blog and update mine as I go along.

    Had first radio to brain yesterday, no effects yet but expect fatigue next week when have one every day.

    Glad to hear of your news of tumours shrinking, sounds like its a time thing after treatment to wait and see if radio works.

    Linda

  • BelindaBelinda Member Posts: 14
    edited March 2015

    Hi Linda and Sam

    I have had mets in lung for over 5 years but recent bad headache and blurred vision resulted in diagnosis of 2 brain tumours. I had surgery on the larger one which was just under the dura(membrane)  in the right occipital region of the brain on the 7th Sept. All went well but now awaiting radiotherapy - 10 treatments to whole brain in a couple of weeks. I'll then be having more chemo.

    My neurosurgeon did a great job, and as a bonus I only had a small strip of hair shaved and it is not apparent to others. Now I find that I will lose my hair after the whole brain radiotherapy not to mention after the chemo. This will be the third time.

    Gee this is a rotten disease. I've just had my 13th anniversary of BC diagnosis, and early next year it will be 6 years with mets.  All that time I have worked fulltime, and feel well. I am very glad to be alive and living a normal life, but it is really confronting at times.

    If I work out how to do it I will try and keep you updated, and hope to hear how you're both going too.

    Belinda

     

     

     

     

  • Linda MLinda M Member Posts: 8
    edited March 2015

    Hi Belinda

    Sorry haven't replied to your post earlier and thanks for replying to mine.  Three weeks ago I finished 6 stereotactic radiosurgery treatments to brain (which is really radiotherapy).  Fatigue main side effect but seem to be almost getting over that now.  Have to wait 3 months for mri for results.  Hope all went well with brain radiotherapy.

    Its been 6 years since my original diagnosis with secondaries 2010 and now this year.  But have discovered we can all live well and be positive about the future.

    Linda    

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