Meningeal disease

My sister has meningeal disease,probably spread from her breast cancer 8 years ago. She desperately wanted to know how long she has to live (she's only 54 and has a 13 year old daughter). At her appointment today Dr said 2 years, maybe 5, he has a patient at 7 too (not sure they hathave meningeal disease or not?) personally I think she'll smash 10 given her age and otherwise good health plus I hope in that time research will come up with a cure and advanced treatments.

No treatment plan yet. They are Waiting on ct scan tomorrow as biopsy of swollen clavicle lymph was clear so that lymph didn't show primary source but they're still thinking breast.

She's very teary but had prepared herself well, just difficult to hear. But doctor was great and said the meningeal disease is minimal so should respond well to treatment (to slow down growth). No radiotherapy yet as it's not that bad.... We can save radio for down the line. So she'll keep her hair for now. Doctor was positive she has "good time" but did say he would stop paying pension and get on and enjoy life as he wouldn't expect her to be living in her 80's!

I feel quite positive and am hoping she's not going to dwell on "time".

Her long term goal is to see her daughter graduate uni which would be 7/8 years time.

We're not telling her daughter time scale and telling everyone else 5-10 as don't think our mum (in her 80's) would cope with the mention of 2.

I can't find any stories online that talk about surviving meningeal disease for that length of time. Everything talks about weeks/months, definitely less than a year. I'm desperately seeking stories of people surviving longer term to give us more hope and back up what the doctor said today... Can we get her to 10+ years?

 

Thanks for reading 

  • Hello Chello and welcome to Cancer Chat, 

    Thank you for sharing your sister's story. It is really difficult for any doctor to give an accurate prognosis so it is important not to get fixated by these numbers. I have read many examples on this forum of people who have defied these estimates so do take them with a very big pinch of salt. I hope that you will get these all important results from the CT scan soon and that they will help them decide on a treatment plan. It's good news though that the doctor thinks that the disease is minimal and that she should respond well to treatment. I hope you will hear from others here who have been affected by this disease and that they will have positive stories to share with you. I know it is hard but try not to pay too much attention to statistics and suggestions of prognosis as these are so hard to predict and vary from one individual to another and I am keeping everything crossed that your sister will defy all statistics.  If you wanted to talk things through with one of our cancer nurses, you are welcome to give them a call on this free number 0808 800 4040  - their line is open Monday to Friday from 9am to 5pm. 

    Best wishes, 

    Lucie, Cancer Chat Moderator