Astrocytoma grade 2 but very large

shirley_l
shirley_l Member Posts: 9
edited March 2014 in Brain Cancer #1
My husband has just been diagnosed with an Astrocytoma grade 2, large tumor in left frontal, small in right frontal. He had a seizure - no other symptoms leading up to this. This was 4 weeks ago. He has just started eating, still cannot walk or stand. Right side of his body is very compromised. We are going to the onocologist this coming Tuesday for treatment options. Is there anyone out there that can tell me approx how long before he can move his right side? I have him in a subacute rehab center, and he is mad at me right now saying I took away his rights, he is being held hostage, and he is not happy about it. I just cannot take care of him at home right now because it takes 2 people to move him and change him, etc. He has made very good progress in the last couple of weeks, but it is a slow process and I know that.

Also, what were the treaments that any of you may have had and how successful were they? Thank you in advance for any information you may be able to give me.

Comments

  • the_liz_army
    the_liz_army Member Posts: 39
    Shirley,
    I am very sorry to

    Shirley,

    I am very sorry to hear about your husband's recently diagnosed low-grade Astrocytoma.

    I also have a Grade 2 Astrocytoma (that I also didn't know about until I had a seizure), and the tricky thing about it is that no two doctors agree on a particular course of treatment with this type of cancer.

    Astrocytomas are in the glioma family of tumors, and at a grade 2 doctors feel it is not worth it to make a patient deal with chemotherapy and/or radiation. After my first surgery to remove the tumor (which was also how they determined its grade) I was advised to "do nothing".

    Within three months of my surgery the tumor started growing again, and I had to have another surgery to remove more tumor. Even though the tumor was acting more aggressive the pathology remained the same (grade 2).

    Now my doctors are treating me with chemotherapy as if I had a higher grade tumor. Fortunately, MRIs show my brain is responding well to this treatment and I do not need radiation.

    Your husband is going to go through a variety of emotions. It is hard to go from being an independent adult to someone who needs to be taken care of. I think it is important that you learn about the area of the brain affected by your husband's tumor. The frontal lobes are responsible for emotions, planning, movement, and some speech. Until he heals and goes through therapy a lot of his behavior is expected to be erratic at this time.

    If you are patient and loving he will make it through this.

    Hugs,
    Liz
  • shirley_l
    shirley_l Member Posts: 9

    Shirley,
    I am very sorry to

    Shirley,

    I am very sorry to hear about your husband's recently diagnosed low-grade Astrocytoma.

    I also have a Grade 2 Astrocytoma (that I also didn't know about until I had a seizure), and the tricky thing about it is that no two doctors agree on a particular course of treatment with this type of cancer.

    Astrocytomas are in the glioma family of tumors, and at a grade 2 doctors feel it is not worth it to make a patient deal with chemotherapy and/or radiation. After my first surgery to remove the tumor (which was also how they determined its grade) I was advised to "do nothing".

    Within three months of my surgery the tumor started growing again, and I had to have another surgery to remove more tumor. Even though the tumor was acting more aggressive the pathology remained the same (grade 2).

    Now my doctors are treating me with chemotherapy as if I had a higher grade tumor. Fortunately, MRIs show my brain is responding well to this treatment and I do not need radiation.

    Your husband is going to go through a variety of emotions. It is hard to go from being an independent adult to someone who needs to be taken care of. I think it is important that you learn about the area of the brain affected by your husband's tumor. The frontal lobes are responsible for emotions, planning, movement, and some speech. Until he heals and goes through therapy a lot of his behavior is expected to be erratic at this time.

    If you are patient and loving he will make it through this.

    Hugs,
    Liz

    Thank you Liz
    Thank you so much for responding. The first Onocologist we spoke with while he was still in MUSC said that he would recommend full brain radiation followed by chemo. I am so scared about the full brain radiation. Everything I read is really disheartening. He is not a candiate for surgery. The tumor in the left is way too big, and he also has a smaller one on the right side. They were totally expecting it to be at least a grade 3, so were really surprised when the results came back. The doctors said if it would have been small, that the surgery would have been a posibility.

    We were vacationing in South Carolina when his seizure came on. They ended up medivac'ing him up to MUSC in Charleston, SC. We live in Florida so I finally got him home in a subacute rehab center. We are going to Orlando to MD Anderson Cancer Center this coming Tuesday for a consultation to see what they suggest, and then will go from there.
  • the_liz_army
    the_liz_army Member Posts: 39
    shirley_l said:

    Thank you Liz
    Thank you so much for responding. The first Onocologist we spoke with while he was still in MUSC said that he would recommend full brain radiation followed by chemo. I am so scared about the full brain radiation. Everything I read is really disheartening. He is not a candiate for surgery. The tumor in the left is way too big, and he also has a smaller one on the right side. They were totally expecting it to be at least a grade 3, so were really surprised when the results came back. The doctors said if it would have been small, that the surgery would have been a posibility.

    We were vacationing in South Carolina when his seizure came on. They ended up medivac'ing him up to MUSC in Charleston, SC. We live in Florida so I finally got him home in a subacute rehab center. We are going to Orlando to MD Anderson Cancer Center this coming Tuesday for a consultation to see what they suggest, and then will go from there.

    Shirley,
    I hope all went

    Shirley,

    I hope all went well with the appointment at MD Anderson.

    Take care,
    Liz
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    shirley_l said:

    Thank you Liz
    Thank you so much for responding. The first Onocologist we spoke with while he was still in MUSC said that he would recommend full brain radiation followed by chemo. I am so scared about the full brain radiation. Everything I read is really disheartening. He is not a candiate for surgery. The tumor in the left is way too big, and he also has a smaller one on the right side. They were totally expecting it to be at least a grade 3, so were really surprised when the results came back. The doctors said if it would have been small, that the surgery would have been a posibility.

    We were vacationing in South Carolina when his seizure came on. They ended up medivac'ing him up to MUSC in Charleston, SC. We live in Florida so I finally got him home in a subacute rehab center. We are going to Orlando to MD Anderson Cancer Center this coming Tuesday for a consultation to see what they suggest, and then will go from there.

    MD Anderson
    Shirley, my sister has AA grade 3 and she is a patient at MD Anderson in Houston. It is a wonderful hospital and they are truly on the cutting edge of cancer treatment. Her radiation treatment went well and she had very few side effects, mostly tiredness and balding. She is now in chemo. After her first week of chemo (knock wood) she is still feeling well.

    I am so sorry you and your family are going through this. My thoughts are with you and everyone else on this board.
  • shirley_l
    shirley_l Member Posts: 9

    MD Anderson
    Shirley, my sister has AA grade 3 and she is a patient at MD Anderson in Houston. It is a wonderful hospital and they are truly on the cutting edge of cancer treatment. Her radiation treatment went well and she had very few side effects, mostly tiredness and balding. She is now in chemo. After her first week of chemo (knock wood) she is still feeling well.

    I am so sorry you and your family are going through this. My thoughts are with you and everyone else on this board.

    full brain radiation
    Did your sister have full brain radiation? I am so worried since I have been reading about all of the side effects of it. We are going Thursday to MD Anderson in Orlando to talk with a radiology Oncologist and see what will be. The medical oncologist said 6 weeks of radiation, and I am asuming he means full brain since that is what was suggested up in MUSC, although the radiologist up there said 2 weeks (Unless I heard wrong). Just so many questions but I guess I just need to wait and try not to worry until I hear what they suggest.
  • livefortwo
    livefortwo Member Posts: 2
    I have the same type
    I had my tumor removed on Jan 13th 2009. Still going through recovery, I do get tired and sometimes feel doomed. How do you get through each day without thinking about the what if's? I'm a youn mother of two young kids and I need to bo around for many years to see them grow. I have a great family and I'm greatful. I had surgery done by Dr. Black whom is known to be one of the best. No further treatment is advised at this time just follow up MRI's. That is scary to me it's like waiting around.

    Any adivice?
  • shirley_l
    shirley_l Member Posts: 9

    I have the same type
    I had my tumor removed on Jan 13th 2009. Still going through recovery, I do get tired and sometimes feel doomed. How do you get through each day without thinking about the what if's? I'm a youn mother of two young kids and I need to bo around for many years to see them grow. I have a great family and I'm greatful. I had surgery done by Dr. Black whom is known to be one of the best. No further treatment is advised at this time just follow up MRI's. That is scary to me it's like waiting around.

    Any adivice?

    radiation
    My husband's tumor is in-operable. They are talking about full brain radiation and I am scared to death of having it done, reading all the horror stories online about it. But I dont know if we are going to have any other options.
  • njcal59
    njcal59 Member Posts: 1
    shirley_l said:

    radiation
    My husband's tumor is in-operable. They are talking about full brain radiation and I am scared to death of having it done, reading all the horror stories online about it. But I dont know if we are going to have any other options.

    In-operable level 2 tumor
    My husband was also very recently found to have a very large in-operable level 2 astrocytomas tumor, gliomatosis cerebri. It completely consumes the left side and also part of the frontal right lobe. It also presented itself by a seizure on June 21,2009.
    After having a biopsy done to confirm the diagnosis, he was seen by a radiation oncolgist who talked about the possibility of full brain radiation. This doctor wanted to consult with the head of the department and with my husbands other oncolgist. They have decided against the radiation for now, and are going to do chemo. We are waiting to hear information on one last blood test before the chemo starts. The test which determines if the #1 and #19 chromosomes are being deleted. Oncolgist says if they are, then he will probably go with an oral chemo. We will find out Oct 12th. Right now I feel like our lives are up in the air and things seem to be going so slowly.
    I hope and pray that your husband responds well to the radiation. Please let us know how things are going or if he is given any other options.
  • Buffy1
    Buffy1 Member Posts: 1
    njcal59 said:

    In-operable level 2 tumor
    My husband was also very recently found to have a very large in-operable level 2 astrocytomas tumor, gliomatosis cerebri. It completely consumes the left side and also part of the frontal right lobe. It also presented itself by a seizure on June 21,2009.
    After having a biopsy done to confirm the diagnosis, he was seen by a radiation oncolgist who talked about the possibility of full brain radiation. This doctor wanted to consult with the head of the department and with my husbands other oncolgist. They have decided against the radiation for now, and are going to do chemo. We are waiting to hear information on one last blood test before the chemo starts. The test which determines if the #1 and #19 chromosomes are being deleted. Oncolgist says if they are, then he will probably go with an oral chemo. We will find out Oct 12th. Right now I feel like our lives are up in the air and things seem to be going so slowly.
    I hope and pray that your husband responds well to the radiation. Please let us know how things are going or if he is given any other options.

    My Husband has the same kind of brain tumor
    njcal59 Hi! My husband was dignosed with a astrosytoma grade 2 tumor 4 years ago and it was inoperable! We live in Michigan and 4 years ago he had a seizure in the car and thats how we found out he had a brain tumor. We went to Mayo Clinic in Rochester Minn. where we stayed in Hope Lodge for 8 weeks while he had raditation everyday as well as chemo pills my mouth! It has now been 4 years on Oct.2nd and they did see alittle change in size so he has gone back on chemo for the next 2 months and then we go back to get another Mri in Jan. to see how it looks again! The radiation that Mark had did shrink his tumor by about 65 to 70 percent. How is your Husband doing now? Did he get radiation? Please let me know how things are going! I know it is an emotional roller coaster at times but stay positve! and keep talking to people that are in the same situation you are. It helps!
  • oneangel
    oneangel Member Posts: 3
    Buffy1 said:

    My Husband has the same kind of brain tumor
    njcal59 Hi! My husband was dignosed with a astrosytoma grade 2 tumor 4 years ago and it was inoperable! We live in Michigan and 4 years ago he had a seizure in the car and thats how we found out he had a brain tumor. We went to Mayo Clinic in Rochester Minn. where we stayed in Hope Lodge for 8 weeks while he had raditation everyday as well as chemo pills my mouth! It has now been 4 years on Oct.2nd and they did see alittle change in size so he has gone back on chemo for the next 2 months and then we go back to get another Mri in Jan. to see how it looks again! The radiation that Mark had did shrink his tumor by about 65 to 70 percent. How is your Husband doing now? Did he get radiation? Please let me know how things are going! I know it is an emotional roller coaster at times but stay positve! and keep talking to people that are in the same situation you are. It helps!

    Hello everyone!
    I'm sorry for any pain you all are experiencing. The only advice I can give is, direct your care. Run your care, or your loved one's care, like a company. You are the CEO. The doctors are employees, and if they don't benefit your company, then let them go and find someone that does. Seek out the best doctors at large cancer centers, and make them part of your team. Go after the cancer hard and fast from every angle, not just medically. Nutrition, spiritual, whatever you are capable off. It's tough. There are bad days. But it can be done. I wish all cancer patients the best, as well as their families. It's a hard battle, but one worth fighting.
  • AMDM
    AMDM Member Posts: 1

    I have the same type
    I had my tumor removed on Jan 13th 2009. Still going through recovery, I do get tired and sometimes feel doomed. How do you get through each day without thinking about the what if's? I'm a youn mother of two young kids and I need to bo around for many years to see them grow. I have a great family and I'm greatful. I had surgery done by Dr. Black whom is known to be one of the best. No further treatment is advised at this time just follow up MRI's. That is scary to me it's like waiting around.

    Any adivice?

    Hi livefortwo,
    I was

    Hi livefortwo,

    I was diagnosed with astrocytoma grade 2. It was removed by surgery 3 weeks ago. The Dr. did not recommend any other treatment except a follow up MRI in 2 months. I am a little worried as it looks like wait and see method. I also have 2 kids under 6 years old. So, I like to live many years to see them grow. I was just wondering if this wait and see is a good option. I will appreciate any input from anyone. Hope God heal all of us from this disease. All of you will be in my prayers. Thanks
  • johngiustino
    johngiustino Member Posts: 26
    AMDM said:

    Hi livefortwo,
    I was

    Hi livefortwo,

    I was diagnosed with astrocytoma grade 2. It was removed by surgery 3 weeks ago. The Dr. did not recommend any other treatment except a follow up MRI in 2 months. I am a little worried as it looks like wait and see method. I also have 2 kids under 6 years old. So, I like to live many years to see them grow. I was just wondering if this wait and see is a good option. I will appreciate any input from anyone. Hope God heal all of us from this disease. All of you will be in my prayers. Thanks

    book suggestion
    I would read Ben Williams book "Surviving "Terminal" Cancer" immediately. I was diagnosed with GBM last October and the book was recommended to me but I did not pick it up until recently - much to my current regret. There is a lot of information in there on ways you can help yourself as well how to better understand/work with/direct your oncologist. I should have also gotten to a specialist in neuro-oncology sooner, while my general medical oncologist has been helpful, it has taken me awhile to realize that she is not an expert in the field and has little to offer than the standard therapy. It is all very overwhelming but definitely take the time to educate yourself and get other opinions. I was also too private about my situation - I had a lot of people offering to help me look up information, but I did not want them to know my diagnosis. Take whatever help you can get.

    Best of luck,
    JG
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248

    book suggestion
    I would read Ben Williams book "Surviving "Terminal" Cancer" immediately. I was diagnosed with GBM last October and the book was recommended to me but I did not pick it up until recently - much to my current regret. There is a lot of information in there on ways you can help yourself as well how to better understand/work with/direct your oncologist. I should have also gotten to a specialist in neuro-oncology sooner, while my general medical oncologist has been helpful, it has taken me awhile to realize that she is not an expert in the field and has little to offer than the standard therapy. It is all very overwhelming but definitely take the time to educate yourself and get other opinions. I was also too private about my situation - I had a lot of people offering to help me look up information, but I did not want them to know my diagnosis. Take whatever help you can get.

    Best of luck,
    JG

    neuro-oncology
    I agree you need to go to a specialist. My sister has GBM we found it in Feb. We got a great radiation oncol, but they hooked us up with a general oncol Doctor. He hasnt done anything.He let her run out of her chemo. Lucky that she is on top of things. We are looking for a new doctor. I really feel like he just doesnt care because of the "no cure" thing. How is your treatment going? Did you have it removed? Wishing you the very best.
  • Shirley,
    I hope all went

    Shirley,

    I hope all went well with the appointment at MD Anderson.

    Take care,
    Liz

    Astrocitoma grau 2
    Hi Liz,

    My name is Margaret I live in Brazil, and my son of 6 years Jhean had grade 2 astrocytoma brain tumor, surgery was in March/2011. The tumor was in the hypothalamic region, he stayed with sequels, lost his sight and stayed with hormonal problems.

    I wish you good health, I know it is hard to come by this problem, but God will give victory.

    My e-mail: margo.nunes@hotmail.com

    kisses