Living with uncertainty

Fran Chris
Fran Chris Member Posts: 2
in Brain Cancer #1
Hi,

My husband had surgery in July of 2011 to remove what ended up being a grade II Gemistocytic Astrocytoma. At that stage it was decided that further treatment should be postponed as the doctors believed that it would be a few years before its return. Unfortunately they were wrong and he needed surgery again two weeks ago in order to remove the cancer that had grown back. Given the speed at which it had returned they now believe it is a Grade III and that this time radiation and possibly chemo will be necessary, it also means that they have given us a prognosis of 5 years if Grade III is confirmed. We are waiting for the final results to come in and have an appointment in two weeks with the oncologists and desperately hope that that it is still a grade II. However in the meantime we are home with two young boys and although there is so much we want to do it feels like our life must stop. How do you make long term plans when future is so uncertain?

Fran

Comments

  • chicken2799
    chicken2799 Member Posts: 105
    #2
    So Sorry
    I have Stage III Anaplastic Astrocytoma, and have had a clean MRI for 2 years and 5 months. There is a small cyst that showed up on the first couple of MRI's after surgery, but it has been stable and may have shrunk a little. I did radiation and chemo, and I am back at work now. I did have two seizures in February and had not had one since November of 2009. They put me back on Keppra 2000 mg, but everything still looked good on CT and MRI. Feel free to read my story on my profile.

    Just want you to know that there are a lot of us that are still fighting this, and the Dr's do not know when our time is up. Some people that are given 6 months live 6 years. My Mother had GBM Stage 4 and lived 6 years after a prognosis of 6 months. Keep fighting and trusting in the Lord!!

    Hope all goes well, and I will have you in my prayers!

    Michelle
    Mobile, AL
  • I_Promise
    I_Promise Member Posts: 218 Member
    #3
    chicken2799 said:

    So Sorry
    I have Stage III Anaplastic Astrocytoma, and have had a clean MRI for 2 years and 5 months. There is a small cyst that showed up on the first couple of MRI's after surgery, but it has been stable and may have shrunk a little. I did radiation and chemo, and I am back at work now. I did have two seizures in February and had not had one since November of 2009. They put me back on Keppra 2000 mg, but everything still looked good on CT and MRI. Feel free to read my story on my profile.

    Just want you to know that there are a lot of us that are still fighting this, and the Dr's do not know when our time is up. Some people that are given 6 months live 6 years. My Mother had GBM Stage 4 and lived 6 years after a prognosis of 6 months. Keep fighting and trusting in the Lord!!

    Hope all goes well, and I will have you in my prayers!

    Michelle
    Mobile, AL

    Make plans for the future
    Continue making plans for the future. You have to believe that life will go on. Live as healthy as possible, travel where you wanted to travel, enjoy every day. You don't know if it is going to be 5 years or 30 years.
  • hayden61301
    hayden61301 Member Posts: 3
    #4
    Stay positive and always think of the future
    I have a very similar cancer..Olighoastrocytoma stage III and I have been dealing with this for a few years. I always plan for the future no matter what. By staying positive it relaxes me and most of the time I can go on with my life like just like everyone else. As for the future being so uncertain I look at it as no one's future is certain. I feel it inside that I will be here until I give up. As for the treatments it can be a pain at times but you meet a lot of people and learn so much. I have become friends with so many people at Dana Farber in Boston that at times I'm excited to go see them at the hospital. if you ever need anything please ask and I hope the best for your family.

    Chris
  • Fran Chris
    Fran Chris Member Posts: 2
    #5
    Thank you
    I just wanted to thank all of you for your positive comments, I think it was just a shock for us that the cancer had returned so soon. One moment we were looking forward to my husband being given the all clear so he can drive again and planing our Easter vacation and the next moment we are back to square one. Although it does makes perfect sense to keep planning ahead and appreceiating each day.

    Fran
  • stacy0611
    stacy0611 Member Posts: 14
    #6
    Positive flexible thoughts!
    I am sorry to hear of your possible news, however, there are many people that I've met that have gone far and above the "odds".

    I was diagnosed with Gr 2 Astrocytoma June of 2011. My tumor is very defused and is inoperable. I went through 5 & 1/2 weeks of radiation and Temodar (chemo) at the same time last summer. I have had my follow-ups and most recently found out that my tumor has changed to (III or IV) or I have radiation neucrosis. Regardless, symptoms are coming faster than we expected.

    I have children ages 21 and 14, at first it was hard, but after I really started living "one day at a time", it became easier. Please try to remember, no one is promised any amount of time, although with a terminal illness - that seems hard at times. Enjoy little things each day and try to make all the memories you can. Hope is the one thing people touched by cancer all have in common. I have met really wonderful people in my support group who are Gr 4, out 6 - 22 years!!! It is inspiring!

    Always make plans! Try your best to be positive, but flexible. If the plan doesn't work for that day, it's ok...

    My thoughts are with you!

    Stacy
  • Scottgri
    Scottgri Member Posts: 44
    #7
    stacy0611 said:

    Positive flexible thoughts!
    I am sorry to hear of your possible news, however, there are many people that I've met that have gone far and above the "odds".

    I was diagnosed with Gr 2 Astrocytoma June of 2011. My tumor is very defused and is inoperable. I went through 5 & 1/2 weeks of radiation and Temodar (chemo) at the same time last summer. I have had my follow-ups and most recently found out that my tumor has changed to (III or IV) or I have radiation neucrosis. Regardless, symptoms are coming faster than we expected.

    I have children ages 21 and 14, at first it was hard, but after I really started living "one day at a time", it became easier. Please try to remember, no one is promised any amount of time, although with a terminal illness - that seems hard at times. Enjoy little things each day and try to make all the memories you can. Hope is the one thing people touched by cancer all have in common. I have met really wonderful people in my support group who are Gr 4, out 6 - 22 years!!! It is inspiring!

    Always make plans! Try your best to be positive, but flexible. If the plan doesn't work for that day, it's ok...

    My thoughts are with you!

    Stacy

    Nice
    Great response, I found hope and many stories of long-term success too. I'm one year in after having a grade 4 GBM removed and planning on having many more. My wife and I are building a new house and should be moving in next month.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #8
    stacy0611 said:

    Positive flexible thoughts!
    I am sorry to hear of your possible news, however, there are many people that I've met that have gone far and above the "odds".

    I was diagnosed with Gr 2 Astrocytoma June of 2011. My tumor is very defused and is inoperable. I went through 5 & 1/2 weeks of radiation and Temodar (chemo) at the same time last summer. I have had my follow-ups and most recently found out that my tumor has changed to (III or IV) or I have radiation neucrosis. Regardless, symptoms are coming faster than we expected.

    I have children ages 21 and 14, at first it was hard, but after I really started living "one day at a time", it became easier. Please try to remember, no one is promised any amount of time, although with a terminal illness - that seems hard at times. Enjoy little things each day and try to make all the memories you can. Hope is the one thing people touched by cancer all have in common. I have met really wonderful people in my support group who are Gr 4, out 6 - 22 years!!! It is inspiring!

    Always make plans! Try your best to be positive, but flexible. If the plan doesn't work for that day, it's ok...

    My thoughts are with you!

    Stacy

    Thank you Stacy
    Whew! Thank you Stacy! I was looking for hope and good news today and you came through for me Stacy. My 18 year old daughter was diagnosed with Anaplastic Astrocytoma 3 in Feb. 2011. She had surgery (got 80-90%), 6 weeks of radiation coupled with Temodar and now we are at the very end of her chemotherapy. She has one infusion left. Her MRI's are stable, I don't think they are completely clear, but there is no new growth. Part of her tumor was inoperable as well. She is beyond excited to be done with chemo. My husband and I are scared about what will happen when we stop. But, I realize, she cannot be on chemo forever. She is in God's hands now. I have to believe he has good plans for her. He has shown himself, many times on this crazy ride. I like your attitude. One day at a time. I need to try that. Sarah is very happy. She does not let the cancer get her down. Keep fighting Stacy and keep hoping. God Bless you. Happy Easter.

    Edna
  • EFarley1210
    EFarley1210 Member Posts: 8
    #9
    alutiiqmom said:

    Thank you Stacy
    Whew! Thank you Stacy! I was looking for hope and good news today and you came through for me Stacy. My 18 year old daughter was diagnosed with Anaplastic Astrocytoma 3 in Feb. 2011. She had surgery (got 80-90%), 6 weeks of radiation coupled with Temodar and now we are at the very end of her chemotherapy. She has one infusion left. Her MRI's are stable, I don't think they are completely clear, but there is no new growth. Part of her tumor was inoperable as well. She is beyond excited to be done with chemo. My husband and I are scared about what will happen when we stop. But, I realize, she cannot be on chemo forever. She is in God's hands now. I have to believe he has good plans for her. He has shown himself, many times on this crazy ride. I like your attitude. One day at a time. I need to try that. Sarah is very happy. She does not let the cancer get her down. Keep fighting Stacy and keep hoping. God Bless you. Happy Easter.

    Edna

    Fighter
    I am a survivor of an anaplastic astrocytoma Gr 3. I also took Temador and radiation. Originally I was told 3-6 months to live. What do they know. Three years 4 months. DONT GIVE UP, Make plans, set goals,Praise God.. After all Life is to short to be anything but Happy. Dont laugh,make that bucket list and do as much of it as you can.
  • HisAndHers
    HisAndHers Member Posts: 3
    #10
    alutiiqmom said:

    Thank you Stacy
    Whew! Thank you Stacy! I was looking for hope and good news today and you came through for me Stacy. My 18 year old daughter was diagnosed with Anaplastic Astrocytoma 3 in Feb. 2011. She had surgery (got 80-90%), 6 weeks of radiation coupled with Temodar and now we are at the very end of her chemotherapy. She has one infusion left. Her MRI's are stable, I don't think they are completely clear, but there is no new growth. Part of her tumor was inoperable as well. She is beyond excited to be done with chemo. My husband and I are scared about what will happen when we stop. But, I realize, she cannot be on chemo forever. She is in God's hands now. I have to believe he has good plans for her. He has shown himself, many times on this crazy ride. I like your attitude. One day at a time. I need to try that. Sarah is very happy. She does not let the cancer get her down. Keep fighting Stacy and keep hoping. God Bless you. Happy Easter.

    Edna

    Seatbelt syndrome
    Edna,

    Stopping chemo is scary, kind of like driving without a seatbelt. You keep thinking.. what if.... The good news is your daughter got to the end of the chemo and is doing good enough to not need the treatment.

    We met a person at cancer camp who was dealing with seatbelt syndrome. She had been on Temodar for two years. We saw this as an inspiration in that my wife was given less than year to live. Now ten years later my wife is telling the same story to others we meet at our oncology appt (I also got a one year prognosis in 2003).

    Another thing to consider is you need to give your body a break from all the side affects. A few months off can give you more energy, let your immune system recover, etc Keep your faith in the Lord. We are thankful for each sunrise.
  • HisAndHers
    HisAndHers Member Posts: 3
    #11
    alutiiqmom said:

    Thank you Stacy
    Whew! Thank you Stacy! I was looking for hope and good news today and you came through for me Stacy. My 18 year old daughter was diagnosed with Anaplastic Astrocytoma 3 in Feb. 2011. She had surgery (got 80-90%), 6 weeks of radiation coupled with Temodar and now we are at the very end of her chemotherapy. She has one infusion left. Her MRI's are stable, I don't think they are completely clear, but there is no new growth. Part of her tumor was inoperable as well. She is beyond excited to be done with chemo. My husband and I are scared about what will happen when we stop. But, I realize, she cannot be on chemo forever. She is in God's hands now. I have to believe he has good plans for her. He has shown himself, many times on this crazy ride. I like your attitude. One day at a time. I need to try that. Sarah is very happy. She does not let the cancer get her down. Keep fighting Stacy and keep hoping. God Bless you. Happy Easter.

    Edna

    Seatbelt syndrome
    Edna,

    Stopping chemo is scary, kind of like driving without a seatbelt. You keep thinking.. what if.... The good news is your daughter got to the end of the chemo and is doing good enough to not need the treatment.

    We met a person at cancer camp who was dealing with seatbelt syndrome. She had been on Temodar for two years. We saw this as an inspiration in that my wife was given less than year to live. Now ten years later my wife is telling the same story to others we meet at our oncology appt (I also got a one year prognosis in 2003).

    Another thing to consider is you need to give your body a break from all the side affects. A few months off can give you more energy, let your immune system recover, etc Keep your faith in the Lord. We are thankful for each sunrise.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #12
    HisAndHers said:

    Seatbelt syndrome
    Edna,

    Stopping chemo is scary, kind of like driving without a seatbelt. You keep thinking.. what if.... The good news is your daughter got to the end of the chemo and is doing good enough to not need the treatment.

    We met a person at cancer camp who was dealing with seatbelt syndrome. She had been on Temodar for two years. We saw this as an inspiration in that my wife was given less than year to live. Now ten years later my wife is telling the same story to others we meet at our oncology appt (I also got a one year prognosis in 2003).

    Another thing to consider is you need to give your body a break from all the side affects. A few months off can give you more energy, let your immune system recover, etc Keep your faith in the Lord. We are thankful for each sunrise.

    keep the faith
    Hi:

    Thank you for the encouragement. You are right, she needs a break both physically and mentally. We are just going to keep living and hoping. I have always thought if God can make her, he can heal her. Amen! God Bless you.

    Edna

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