Help! I Really Need Some Advice.

Hi, my name is Blair and I was recently diagnosed with a Stage 3 Astrocytoma. I am only 21 and both of my parents passed 9/11. My friends don't really know much about this sort of thing and I am very scared. My doctor isn't very compassionate and I just need some advice, positive news, or just to hear from anyone who is dealing with the same thing I am. I would really appreciate hearing from anyone. Thanks so much,
Blair

You are a brave young women. I am not experiencing the same cancer, however to beat my cancer or any cancer you must remain mentally sound and continue with a positive mind. To beat any cancer is 60% mental attitude. I spent two years battling rectal cancer. I had 6 surgeries, experience 70+ chemo treatment, over 40 radiation treatments and a while for recovery. I am just starting to feel like myself again. Look it isn't easy, but find something. Start a journal immediately and write in it each night. Get it out on paper. Do reflections each day.

I would really like to recommend that you continue to listen to positive tapes, read positive books, be around positive people (your friends) and possibly any close relatives that can help you through this. What made me stay the course was my strong faith foundation. I turned it over to him, prayed a lot, read the bible, and did a lot of volunteer work to help others. Anything to get my mind on something else. During this process I tried my best to keep active with exercise. Just get out and walk if you are able. Anything to try to keep your body going.

My advice, you need to take each day and build from there. Don't look behind and don't look ahead. Make each day the best day you can. Read a lot about your type
of cancer. Get educated and search high and low about your types of treatments.

You can beat it. There are incredible treatments out there. If you don't like your doctor find another and another and another until you find that right one.

I had 5 incredible doctors. My oncologist and hematologist were awesome!

I met some incredible people through this journey. Have faith and you will get through this!

Keep in touch if you need to.

Blessings

Don L.
Pittsburgh, PA

Hi Blair, I cannot respond about your specific type of cancer. I had been diagnosed with Ovarian Cancer (Stage 3C) in 4/2000. I have been on chemotherapy for three straight years. We have not been able to get rid of the cancer, but have been able to keep it stable. I am actually doing quite well with all of this. You need to just make up your mind that you need to do what you need to do to get through this ... no matter what it takes!! Work on trying to accept the diagnosis and then getting on with life, doing your research, and going for whatever treatments are recommended (surgery, radiation, chemo, whatever it takes!). I firmly believe that my positive attitude is what has kept me going for the past three years. And, I do anticipate being around quite a bit longer if I have my way!!! Good Luck, Debbie

Hi, I kind of know what you are experiencing. I have a grade 2 astrocytoma which is primary to the brain. It was diagnosed in March of this year although my doctors found something on a c/t scan the day after x-mas 2002. I have seen 3 sets of doctor teams, some are compassionate and some treat you like a car in for a tune up. Compassion should be part of their oath, but I'm sure that carrying a load of patients that include many that are terminal is an incredible thing to deal with everyday. Find another doctor if you are not comfortable with the current one. I found it easier to deal with my cancer just knowing there are many people experiencing the same thing. You are still young and the chances are good that a cure can be found. Everyday, my friends e-mail me some new research that looks promising. Scorpion venom, altered cold viruses, etc. Keep your spirits up and e-mail me if there's anything I can do for you.

Thanks Don, I really appreciate everything...I will try and stay positive and keep you updated. I hope your situation is working out as well. Agian, thank you sweetie for the advice.
Blair

Blair - I am sorry to hear about your diagnosis. Without knowing specifics such as resources readily available to you, or where you liv geograhically, I would recommend such places as university-associated medical centers that specialize in neuro-oncology, or other cancer treatment centers. In my case, I live in south west Michigan. We have excellent resources here, including the West Michigan CancerCenter, and the University of Michign Cancer Center associated with the UofM Medical Research Center. You can probably go online to find treatment centers close to your area. Just type in brain tumor treatment centers, or neuro-oncology treatment centers. I would also recommend that yourequest your doctors to be an advocate for you in finding help. If they won't then I would suggest looking for a doctor that is more interested in helping you live longer.

I was diagnosed with a Grade IV astocytoma, Glioblastoma multiforme in October, 2002. I hav have had initial surgery andfocused external-beam radiation. I had a rcurrence thi June. I had another surgery followed by Gliadel wafers plus Gliasite brachytherapy. Since I am not a doctor, there may also be other ways to get at the tumor such as gamma-knife surgery. Hopefully your doctors will work hard for you to find the best approach. Best of luck, and best wishes. - RP

Hi Blair. I've never done these message boards before and it seems a lot of these messages are very old, but hopefully I'll figure this out and be able to "talk" to you. I'm sure you've found out much information since your message a year or so ago. My brother just recently was diagnoses with a probable astrocytoma stage 2. We were told by two doctors to wait until it causes more problems to treat (ie radiation or resection), but then we were directed to a doctor who believes in surgically removing these things before they cause more symptoms. His name is Dr. Spetzler and he is in Pheonix AZ. There is a book about him called The Healing Blade. It sounds hopeful. His surgeries are followed up by all the normal treatments such as chemo, radiation or other drug therapies. You should check him out. Has any one out there had any experience with Spetzler? We have an appointment with him next week.

Denise

Hi Denise,

My fiance was diagnosed with a Grade II Astrocytoma on 1-26-05, after having mild headaches for about 2 months. They finally ordered a CT scan and we were called back to the ER that evening, as they found a mass (8cm) on the right frontal lobe. He has not had any seizures and is having no neurological effects... no numbness, weakness, etc. The steriods have stopped the mild headaches he was having to begin with. We have since seen 3 neurosurgeons and have had a biopsy performed, confirming the diagnosis. He then referred us for consultation with a Radiation Oncologist and Oncologist, both of whom recommended resection if possible, as research shows that radiaiton and chemotherapy will not help a low grade tumor of this kind. We met with the Neurosurgeon again today to discuss our consultations and he said he is reluctant to attempt resection... 1)he does not feel the entire tumor can be removed 2)he feels there is a strong chance Bradly will suffer some neurological damage. Because he is not having problems now, he said it is an option to wait until we start seeing additional side effects (ie: the tumor has progressed!) Bradly is just 25 and otherwise very healthy. We would like to find someone who felt confident in resection and are in the process of being referred to MD Anderson Cancer Center in Houston in hopes of finding just that. I have read alot about this Dr. Spetzler, your email in particular really stood out to me because you seem to be going through the same thing. I was wondering if you had in fact seen Dr. Spetzler and how you felt about the appt. I am very sorry to hear of your brothers diagnosis and will keep him in my thoughts and prayers.

Thank you for your time.
God Bless,


Jamie