edcaro Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Hi all, my very dear girlfriend who is 37 years old has a rare and complicated form of cancer that started in her breast and spread to her spine and brain. It was referred to by one doctor as cancer of the nervous system. She underwent massive doses of chemo through a shunt directly to her brain and through her arm followed by radiation treatment. Doctors had not given her much hope of survival due to its advanced state. However, a year and ahalf on she it still with us. As a result of the cancer, she lost the ability to walk without a frame and has had to learn to drive again by having her car converted. Recently though, she has started experiencing symptoms again similiar to those she had when first diagnosed i.e. headaches, nausea and sometimes vomiting, bad skin, drooping mouth and eye on the left side and a slight deterioration of her walking. She has undergone lumber punctures, MRI scans and PET scans and all are clear of cancer. The doctors are baffled and suspicious due to the nature of the cancer i.e. being in the nervous system and constantly on the move. They are currently trialing a hormone treatment (as the primary site was the breast) to see if that has any affect on her symptoms. Is there anyone reading this that may have suffered a similar cancer and can offer any advice? Thank you Caroline


  • ryley
    ryley Member Posts: 55
    So sorry to hear of your friend's tribulations with this (sounds like)unusual disease. Some of the symptoms sound like IBC - Inflammatory Breast Cancer. The skin problems and mets to spine and brain. I assume (hope) she may have also gone through systemic chemo prior to the brain shunt? There are some very good IBC web sites that have stories of others who have gone through similiar situations. is one web site.

    Good luck and may God bless your friend.