Morning lovely ladies - don’t post very often but could really do with some reassurance. Has anyone been living with brain mets for a while? I had CT scan results yesterday and they showed I have a small met on the brain … just waiting for a MRI scan to check there really is only one before they can decide what to do. Really really scared and husband keeps crying - have come into work today as don’t want to be on my own but not sure it was a good idea!
Oh what a shock for you. If you have a small number of mets I would urge you to look at the possibility of having cyber knife treatment over whole brain rads. It is less debilitating and can be repeated.
Take care. X
Hi,sdp,im so sorry I can’t help you with any advice on brain mets. All I can do is send you a massive hug. I fully understand how scary this must be for you xxxx. There are ladies on here that has been successfully treated for brain mets,hopefully they will be along to tell you some information and offer advice.
Massive hugs coming your way,Helen xxxxxxxx
So sorry to hear your news SDP and hope you get some full answers ASAP so a treatment plan can be put in place. If I remember correctly you are HER+ so there is the possibility of lapatinib and/or Capecitabine which both get through the blood/brain barrier, or so I understand. I know of another lady who had this combo and it worked on her brain mets until radiotherapy was arranged. Good luck.
Nicky x
Hi SDP
I’m sorry to read of your recent diagnosis. As well as the support you are receiving here you might find it helpful to talk things through with a member of staff on the BCC helpline. Here you can share your fears and concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hi. I was diagnosed with a secondary brain met in Feb this year. I was originally diagnosed with primary breast cancer two years ago and had mastectomy, chemo, radio and herceptin. Both primary and secondary were HER. I had one brain tumour which was 1.9 cm. My case was discussed by the MDT and I was told that as there was a good chance it could be removed fully I should have a craniotomy. I had this in March. It was very scary beforehand but actually was not anywhere near as bad as I had imagined. There are a couple of other ladies on here who have also had similar experiences and one who has also had radio as well. I have been doing well recently and my team are working on a watch and wait basis. Hope you have a lovely holiday. If you are worried about possible seizure they could always put you on some epilepsy meds which should prevent these or steroids to reduce any swelling. If you have any questions feel free to pm me. Sending hugs. Sarah
Sarah I am the same as you with inoperable brain mets as well as liver and bone, I go the whole hog! I had 5 sessions of radio which was no problem though the 150 mile round trip to the hospital was awful!! I am now on chemo but this was stopped a couple of weeks ago as I have lost too much weight too quickly, 3 stone in 2 months and have landed up as weak as water! For over 5 weeks I hardly ate anything some days nothing everything even water tasted horrible. I have just had a CT scan so the onc can find out what is going on with my mets and change/adjust any further treatment. I go on Thursday to get the results and must admit I am just a tad nervous! Still we must carry on and not let this horrible illness win. Positive attitude is the way to go so keep fighting!!!
Me too! I’m very scared and gutted to be losing my hair again. Good luck SDP and hope your scan results were encouraging bill-ben xxxx