Intracranial hypertension, can't find any cancer. Help !

GirlWarrior

Okay gals, I am hoping there are a few detectives out there. I have been lurking here for a year and if there is a place to come for answers, it is here !!

I had a digagnose of ILC in January 2015 and underwent chemotherapy, surgery, and radiation. I came out of that as high risk - nodes invvolved, chemo did not work well at all, large tumor so I always knew that things could turn. But not this fast.

End of August I was one year out of treatment and six months on tamoxifen and six on letrozole with lupron. I started having some breathing problem, a little sinus infection and a mild headache. Well I got a CT for the chest and instead they found innumerable small lesions in the ribs, thoracic spine and further imaging found sternum, pelvis and lumbar. I quickly started on a clinical trial and was told how lucky I was that I could live a long time with bone mets. But the breathing problems did not go away with the sinus infections and the headaches have ended me. I have left my job, had a bone scan, had three mris, two cat scans and a lumbar puncture. And the keep telling me they can't find anything. The pain is excruitiating, my head feels like it is going to explode - and when they reduced the spinal pressure, it all went away for a whole week. I cannot be left unsupervised, I can't drive, I lost me hearing in one ear for a day and my eyeball was bulging out of my head. I now have to sleep sitting up, and am on high dose steroids to reduce the brain swelling and I just keep wondering what if it is not in the brain. Maybe one of the spinal lesions is putting pressure on the brain stem and causing all these symptoms. Anyone out there have intracranial hypertension unrelated to what was going on in their actual head ?

Please get back to me fast if you know anything - my diagnosis is crazy 2-4 months or maybe ten years - depending on who I listen to. I am really starting to lose it and I am so scared.

Meadow

Girlwarrior, I do not have any answers for you , so sorry! But I am bumping your post to the top of the active threads, so others can see it and respond. Giving you a big hug.

GirlWarrior

Thank you for the bump Meadow - I should probably have not written my first post in a steriod induced haze

Follow up MRI came back yesterday positive for leptomeningeal metastases. I am gutted - Six weeks ago I found out I had bone mets but it was all very early and too small to biopsy and a great prognosis, maybe I would live many years. Now I am being told to get my affairs in order. How could this happen ?

KBeee

Girlwarrior, I am speechless. I am so sorry. I go know that there's a gal that has a blog I followed first time around that had a recurrence just before I did, and she is getting intrathecal (I am probably misspelling that) chemo for leptomeningial Mets. She is on Facebook and I think her blog is called "Darn Good Lemonade".

You might also find some good advice in the stage IV forum.

Sorry you are dealing with this.

murielwhite5

Hi Girl Warrior, Sorry you are dealing with this. As KBeee said go to the stage 4 forum where there are ladies who post on the Brain met sisters and there is a separate one for Leptomeningeal mets only the spelling is wrong so look for Lepto instead of Lepo. There are some lovely ladies there who will give you info and support. Best wishes Muriel

SSInUK

girlwarrior this is horrible, i am gutted for you. But my very sketchy understanding is that BC patients with this kind of mets can still do well with treatment . It's not the end. There are many weapons in the armoury. Hang in there. I wish you a pain free day of autumn moments, leave the affairs in a tangle for today. Sending a hug

Meadow

girlwarrior , just hugging you tight. you chose that kick a$$ name because you are, a warrior. Good advice from the sisters above. keep us posted

GirlWarrior

Thank you so much for your support ! I have finally gotten for over my shock, I think. In one week, I managed to resign from my job, send in all the paperwork for transfering my pension in to a cash value, public servant so a huge hurdle. My husband is taking extended leave to help me with everything. We have also found a nice two year rental house in the city where my family all lives, so I think we will be relocating there now. I got a second opinion from a private clinic who is sending my whole cancer file for a review in Toronto, and I was offered private access to treatment I cant get here, just over the border in the USA. I am going to start whole brain radiation tomorrow for a week, and then I have decided to do another "alternative" treatment "dca" starting the next week. Who knows what will help at this point - I have nothing to lose. I can't believe we managed to do all this in a week - even my brother showed up for three days to build a wall and door to the guest room ! I am so grateful for all this support and hope that I can turn the prognosis around a bit. The warrior is back !

SSInUK

wow. You are incredible. Some warrior! I pray that great fighting spirit is going to carry you a long way forward. V good luck with the rads. Glad you'll be surrounded by family, good call. Gentle wishes

KBeee

Sounds like you have a great support system. Hoping those treatments work for many, many, many years.

mara51506

GirlWarrior, I am sorry you are having to deal with the LM. That is a scary diagnosis. I want to let you know there is a person under the username of mandymoo that is still going strong a couple years after her LM dx.

There are better treatments available than there used to be, between the whole brain radiation and other chemos that pass the blood brain barrier. No one can tell you how long you will have. Even with bone mets, getting affairs in order would and should be standard practice with a stage IV dx. Not because you think you will die so soon, but because it is possible. Live your life, if you feel good day by day, enjoy that. Eventually, the rawness of the dx will fade somewhat. Good luck to you.

If you ever need it, besides the lepto threads, there is also brain mets sisters that can give you an idea of what to expect during radiation etc. If you have any questiions, I recently also completed whole brain radiation myself just over a month ago.