I am so sorry- there just is nothing that can be said to make this better.

It is amazing, tho, what they can do to shrink tumors and make life bearable. Don't give up hope - you are right that she probably won't survive this, but she may very well be able to live with it with some treatment, and perhaps for longer than you might think.

We will be thinking good thoughts for her, and for all of you who love her so.

That does make me feel better les917, I will hang onto the thought that maybe her brain tumors can be shunk enough that she will have a bit of her great mind till the end. I can't bare to think of her losing that... Ok, that thought will help me sleep better tonight. Thanks I needed that!

JT, indeed, as Les suggests, there are amazing things being done in the realm of cancer care. Before you conclude that she's not treatable, wait for more info to come in from her and her doctors.

My sister had a very large brain tumor removed a few years ago. The surgery was major. It took 12 hours to complete. She had the same surgeon as Christopher Reeve! A tumor of this type had not been seen in the registry since 1969. Only two places in the country could have performed the operation. In other words, it was very large and very rare!

She needed no chemo or radiation. Today she is doing great. Absolutely great. Your aunt may, and probably does, have a different sort of tumor than my sis had. Hers may be treatable with radiation alone. Of course, I don't know. Just saying, the world we live in is a very different place in this regard than it was 20, or even 10 years ago. There are new advances in treatment all the time. Some things that sound impossible to deal with are actually not that difficult to treat these days!

I know it's hard, but wait to get in more info and keep us posted.

Warm regards and best wishes to both you and your aunt! She's lucky to have a niece as caring as you!

Hugs to you... That is a very hard diagnosis to hear.

Maybe you could go to a doctor appointment with her, and find out what treatment options are available? Keep us posted, and know I am sending good thoughts.

Jen

That kind of news must have hit you really hard, so sudden and so unexpected after appearing healthy at your house. Like Les said, though, they do great work with slowing down and reducing tumors. It sounds like she has a good support network - it can make all the difference.

I'm so sorry. I never expected to open this post & read something like this.

6 weeks after losing my dad; we lost my father in law to brain cancer. His doctor did not take his complaints serious. We figure he was probably walking around with it for about a year. On the positive side; he was able to have quality of life. His started elsewhere too. Central nervous system Lymphoma is the name of one that starts elsewhere.

I'm going to give you some general information. If you know me by now; you know when I see cancer mentioned; my brain goes to information mode. When my hub was diagnosed with oral cancer; I had an idea of where to turn but I wasn't sure. I know that outcome depends on where a person is treated for specific types & I wanted to make sure my hub had the best care we could get.

Go to the link below; make a new post & give as much information as you can. The caregivers there are awesome. The way the brain works; if a mass is in one side of the brain; it will affect the other side of the body. I always suggest anyone (including my hub) diagnosed with cancer; to get their affairs in order- especially with a medical power of attorney. The one we used is called 5 wishes; if you send me an email I can tell you where & how to print a copy.

Depending on location; treatment can be devastating to the patient / family. If they remove the tumor; depending on the location; the patient could lose functions- speaking; memory; paralysis. parietal lobe function What I know is that there are 3 or 4 main cancer centers that are the best for this. There are 2 other types of radiation called Cyber Knife & Tomotherapy that you may want to read about. I kick myself for not calling cyber knife back for radiation for my hub.
There are vaccines that are in clinical trials. In order to qualify; they can not have surgery; chemo or radiation. Example of one vaccine post

I have a list of questions to ask a doctor & can find the post if you'd like it.

~Hugs

Here is a link that might be useful: Link

I'm sorry, it's never easy to hear the word cancer. Don't give up hope or worry unnecessarily without all the facts and the treatment plan (easier said than done I well know).

I know people with brain mets that live for years and with dignity.

Good luck to your aunt and your family. It will be a difficult road to travel but there are remarkable treatments even if it isn't curable.

I am so very sorry for this frightening diagnosis, but I do hope that the treatment plan for your aunt encourages you. I wish you and your family peace and comfort in the days to come.

jterriynn, I'm so sorry to hear about your aunt. As others have said, it's amazing what can be done nowadays! Take one day at a time--

You are all such a great bunch!
More bad news, aunt was told brain tumors are inoperable. I'm confused about a lot of this info because she hasn't had her full body scan yet; guess that's tomorrow if my 2nd hand info is correct. Today her toes are curling up on one side and she is having a hard time walking and her already affected side of mouth movement is worse. Things seem to be moving along very fast. They are putting her on steroids to help relieve some of the swelling. From what I gather its thought the cancer may have originated in one of five more common areas, the colon, lymph nodes, liver or she has melanoma. There was one more but I forget. My aunt has lacked energy for a year and I know she had most areas checked out including the liver so I don't know. Right now I guess she's trying to clean and clear out stuff in her house so she doesn't die leaving her husband a mess. She is always thinking of others. It's so weird that she was sitting at my kitchen peninsula just a very short time ago drinking wine, laughing and seemingly normal. She did look tired but they had all driven 24 hours from Michigan to see me and her son in Florida. It's just so hard to think that she's going down hill so fast. It's also a bit hard to deal with the way some people in the family handle stress through negative bashing of other family members and so on, I'm not getting caught up in that hopefully as I have a low tolerance for such things.
Roselvr, thank you so much for all the info! Hopefully my mind will be clearer tonight and I will check out all that you shared. I will pass this info on to family members as well...thank you so much.
Terri
P.S Thank you all for listening and letting me vent

I'm so sorry but I do hope that once ya'll get through the testing, treatment options, etc. that you will feel more encouraged regarding your aunt's prognosis. And if the news is not good, well, I hope the family will come together and help each other - and most importantly your aunt - through this.

Your aunt, and the family members dealing with this, will be in my prayers. Please keep us posted.

tina

I'm sorry, JT. Please come back and talk and "vent" as needed.

You are wise not to get caught up in others' negativity. That would only bring you down and won't help matters at all. You are also wise to recognize and not take personally when people are behaving less than ideally because they're afraid and stressed out.

This forum is a support system, and I hope you will use it, and whatever other networks are available to you.

Take care.

I agree that this forum is wonderful to vent to. You will get a lot of support from everyone. I remember the feeling of hearing each family member cancer diagnosis & how horrible it is. It hits me especially hard when I hear people my age (your aunt is 4 years younger) & kids get diagnosed. There is new treatment every day like the vaccine trials; so don't give up hope. She needs to stay as positive as she can. What helped my dad was getting cards. I also put together a photo album for when he was admitted. It was easy to take a few pics out of it & tape them to the wipe off board. There is a web site called Caring Bridge that someone can make a blog to keep family & friends updated. They can make it public or private. What I like about it; it's easy to use & they have cell phone app.

It's good that she's keeping busy. Don't let the toe curling; etc get to you.. its possible it is swelling like they're saying & it's good they are on top of it. They will probably give her dex; they need to follow the directions with the medication & not stop it without them knowing. If they notice she's not showing improvement; they should call the doctor back asap so they can adjust the dex if it's not high enough. They also may put her on a seizure medication. It sounds like you're close to her; hopefully you can help her through this.

I'm sorry family are having problems. I haven't seen my family since losing my dad 5 years ago. You wouldn't believe how common it is for people to get weird. Illness should bring people closer; but in a lot of cases it tears people apart.

I just looked up the University of Michigan assuming she's from there; it's rated pretty high for cancer; #13. If they can call to get her an appointment there while they are waiting for the tests; they'll be a step ahead. I don't know if they are doing any of the vaccines; but since they are NCI (National Cancer Center) designated; they may be able to get her into one of the trials with them doing treatment.

Keep in mind that some centers also do web cam/ phone appointments. This allows patients to get treatment from some of the larger centers without having to travel. They usually ask for her records to be sent there.

Sending more hugs..

This must be a bitter pill to swallow, as my mom used to say. Try not to project into the future and know that we are all sending hugs, prayers and positive thoughts for the best news and treatment possible. You have been given great advice above.

Thank you goldust,stinkyG and tinam, you are so kind!
Roselvr, Your suggestion of the CaringBridge site was a HUGE hit. My aunts oldest son has a hard time coping so with the help of his brother they started the site with my gentle nudging. It's great therapy for them and a way they feel they are helping...it has made them feel good and useful.
I'm so worried about them as well because my aunt was the "rock".
Thank you all!

Terri, I'm sending positive vibes to you and your family, and most especially, your Aunt. It's so hard to get information second hand, so I hope you can get answers that you need.

The people in this forum and so amazing. The compassion and insight is incredible, and I can personally say that I've received great advice and comfort here. I hope you can too.

I'm glad the caring bridge site is helping. It's a wonderful way to stay connected to everyone. If they need help with anything; feel free to give them my email addy. We have one for hub; we love that they allow us to have it public or private; you can also set it up with a master password. Out of the cancer blog sites I've seen; caring bridge is the easiest

Have you spoken to your aunt at all? How is she doing & how are you doing?

We had some good news today from scan results, no cancer showed in any organs...pelvis to lungs. Next biopsy to determain the brain tumors cancer type. Aunts symptoms are moving fast and she is having a hard time talking, moving her mouth. She posted her up-date on her new site that happened in the nic of time. However, she was "up" about the scan. Long road ahead for her but she does have a great large network of friends and family. It's still very sad, she is only 55 and was very active.
My husbands cardio doctor tells him all the time that people are lucky to make it to their fifties. For my husband this way of thinking works because he believes its a good reason why he and people in general need to make the most out of life and have enjoyment. Me, I agree with him but still I just wish we could all live till old age maybe 80 to 85 while still being functional and then die in our sleep.

Terri; anything new?

Your hubs doctor is right; you would not believe the amount of people in their 30's to 50's with cancer. It's so sad.

Hi roselvr, I'm such a bad person...been feeling horrible that I didn't ask about you and your family and all you are going through. This stuff is just so consuming so I am so very very sorry!!! Aunt had her biopsy yesterday and I think may get out of hospital tomorrow, so more waiting. They finally put her on steroids! I just found out my deceased younger brother's best friend (and my friend) has cancer, started as melanoma and has spread all through his organs. He went to ER because he was having trouble breathing and has not been out of the hospital since. He just turned fifty a few weeks ago. MG does everyone have cancer? I'm in a funk today.
Roselvr, I have no idea how you coped through all your family members and this stinking cancer. I'm coping bad long distance and must really be a whimp...I never knew I was a whimp.

Terri; we're doing ok. His last treatment was 12/24/09; so far; so good. He does have memory issues from neck radiation; but we're fortunate that while he has a few problems due to treatment/cancer; he's better off then a lot of people. He herniated his back a week ago; so we've been dealing with that; trying to get appointments so he has a chance at recovering unlike me who was not treated properly when I injured my back.

How do you deal with it? I honestly don't know. It's the most horrible roller coaster ride I've ever been on & it's harder if there are family issues. What doesn't kill you makes you stronger right?

I know it hurts really bad if you're close to the person diagnosed.

Hi ros and all, well aunt got the death sentence a few days ago, stage 4 Grioblastoma (sp?). We are all very devastated. I talked to her yesterday and she is like me, a straight talker. She doesn't want to be pitied or for anyone to pretend that it's not as serious as it is. It is so much easier for me to talk to realists. So, we talked about how she's getting bombarded with people wanting her to go the natural route and how some friends are claiming she will be cured with a certain kind of tea. She is very overwhelmed with the choices on cancer treatment centers as well. I do know the FDA just approved the Novo TTF cap that can be used 12 hours a day after the initial hit of chemo and radiation, we talked about that and how there is a possibility to buy her some time, save some brain cells and have some better life quality. The U.S studies are conservative with a small study group of less than 300 but still seem to offer some good, the Israeli studies (where invented) go back to 2007 and show an improved life span and in some cases shrinking tumors. So, at least there is something although no cure. As far as we know there is only one trial going on at the moment for her multi tumor brain cancer type. She has close to two weeks before she can start anything due to waiting for the biopsy area to heal. They are taking her off the steroids but I have no idea why. Her speech is getting slurred and she has trouble with balance/ walking but this was there before biopsy and is not a result of...just getting worse and moving fast. I'm still very upset that rotten murderous people are walking the earth healthy and she is sooo good but so ill. A few weeks ago she was sitting in my kitchen, normal, laughing and having a drink.

I'm very sorry to hear this. She sounds like she truly is a wonderful, kind person. I hope the new treatment will help her.

This is so sad. I'm sorry to hear this news. She sounds like one in a million. (((hugs)))

Terri; I'm so sorry. GBM is horrible. Have you looked at the brain cancer forum I gave you the link to?

I just sent you an email but I'm not sure if it's the correct addy- let me know if you got it. I want to give you a few links.

The people with natural suggestions are trying to be helpful but they have no clue. The BC forum just lost a really healthy guy; so it goes to show that even people that already live healthy can get GBM.

I have a list of questions I'd also like to give you. Hopefully the doctors will answer them honestly so she can make her decision. What I know about GBM; there is a standard of treatment; there are also I think 4 that are the best for it.