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Anyone been diagnosed with a Grade II Astrocytoma and scared?

tommybear
Posts: 112
Joined: Oct 2009

I have recently been diagnosed with a Grade II Astrocytoma in my left temporal lobe. I have been very fortunate in the fact that I haven't had any major symptoms, my tumor was about the size of a small golf ball, I guess. My surgeon was able to remove about 50% and have recovered very well from the surgery. Only slight headaches and dizziness. I am scheduled to have stereotactic radiosurgery on November 19th.

I have read many of the discussions about chemo and other radiation treatments, and am curious now why my doctor has not mentioned anything about chemo. I am assuming because I have a Grade II.

I also feel guilty that I am not very optimistic right now. I am having trouble trying to focus on life and not the fact that I have a brain tumor, but sometimes I am sad and scared. I have two sons, 15 and 6, and hope that I will get to see my grandkids one day. I know that can happen, but the fact that I don't know if my tumor will become a higher grade (and when) is what bothers me. I wish that I could live each day like there is nothing in my head, except what is supposed to be there!

I know that God has a plan for me, but sometimes I wish I knew exactly what it was.

sue Siwek
Posts: 281
Joined: Jun 2009

tommy bear, be thankful that you tumor is a grade 2, it is not cancer but must be removed. hence, no need for chemo. my husband has survived after having an inoperable grade 3 tumor for 10 yrs. concentrate on recovering from you surgery and rest, eat healthy and be positive. sounds like your doing well and in time probably will be your old self, but will appreciate your family more than ever. i believe you will meet your grandchildren, that is if you don't smoke, maintain a healthy weight, drink moderately and drive safe with your seat belt! those are probably more deadly. i don't mean to take your situation lightly but i will tell you that i had brain surgery 4 yrs ago for water on the brain and had a shunt put in. it was a month of recovery but since then i haven't stopped living every minute. be strong.

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

I am sorry but my son had grade ii astrocytoma. I am also on the Board of Directors for The Rhode Island Brain and Spine Tumor Foundation since my son got diagnosed. We had a physician meeting last night where a neuro-oncologist spoke about this important topic. She said that grade ii is cancer, however, low grade could return. I am very positive that Michael, my son, will have a full recovery and I am not saying that won't happen but grade ii can return so therefore, please don't say it isn't cancer.

With much respect.........

tommybear
Posts: 112
Joined: Oct 2009

Thank you for your comments, I have heard so many different things about Grade II. I was actually surprised to see the Astrocytomas listed in the discussion boards, because so many places tend to make it not sound like cancer - unless it is a Grade IV. I have even looked for support for people diagnosed with a Grade II and have not much luck. I think that the Grade I and Grade II tumors must be uncommon to be diagnosed with because people often don't have any problems until it is a higher grade or they are having serious problems.

My surgeon believes that with my age, I'm 38, and general health, that I should have the radiosurgery to maybe take a chance that it will slow down or shrink my tumor. He feels that any risks I might be taking are worth a shot, and I am willing to try to avoid a higher grade even if it does mean some difficulties. My boys deserve to have their mama around for a while!

I am grateful for my family and for everything that I have learned since being diagnosed.

sue Siwek
Posts: 281
Joined: Jun 2009

i stand corrected. from what i have read and from the neurologist i have spoken with at henry ford hospital, most grade 2's are non cancerous. sorry that your sons was not.

tommybear
Posts: 112
Joined: Oct 2009

I've read many positive stories online and hope that I can have such optimism. Everyone says that they are impressed with my attitude and that I seem great, but sometimes it is just hard. But that is how life is anyways, seems like my family is dealt the difficult hands sometimes...

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

FYI:

Grade II astrocytoma IS cancer.

Read about Gliomas, including low-grade Astrocytomas on the American Brain Tumor Association website: http://www.abta.org/tumor_treatement/184-2

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Tommbear, my son has recovered from a grade ii astrocytoma. He has been five years cancer free. I will pray for you. You will be a survivor like my son, Michael.

Laura

PBJ Austin
Posts: 346
Joined: Mar 2009

Hello Tommybear. It's hard to imagine anyone not being sad and scared upon hearing a cancer diagnosis. My then 25-year-old sister was diagnosed in March with AA grade 3 and it was devastating. She is now used to the idea and she has a great attitude, but of course that cannot be expected at first. Have you considered joining a support group?

I'm glad you found this board, it has helped me tremendously to hear survival stories from those who have been down this road. All the best to you and your family.

lilmissy
Posts: 3
Joined: Oct 2009

I found out about my grade III astrocytoma when I was 32. Two surgeries and treatment in two years. Now I'm 35 and I'm ok. I understand that you're scared.I was scared out of my mind. But after you've come through brain surgery, not much is intimidating. I wish you the best.

tommybear
Posts: 112
Joined: Oct 2009

Thanks! That is true - most of us could handle just about anything now, right?

Your tumor is gone or in remission? What type of treatment did you have?

Has anyone had issues with not wanting to have a relationship or friends due to the fact that you feel like maybe you won't be around forever? I know that noone knows exactly when their time will be, but I can't help thinking about the fact that if I become close to someone, then I am setting them up to be hurt.

I know I sound really negative, and I am not like that every minute, but these are things that I feel like I can only express to others that might be in the same type of situation.

sue Siwek
Posts: 281
Joined: Jun 2009

you are not negative, you are grieving. give your self time to adjust and gear up your fighting spirit. believe me you will find it. i as a care giver will tell you that when and if and i mean IF! i should survive my husband who is the patient. i am thinking that i do not want to be involved with anyone other than my children and grandchildren. but, on a personal note, caring for my husband has been a wonderful albeit painful experience that i would not trade for anything other than his health. please allow others to come close to you, you need it and they do to. if you should not survive it will be something that will make them a stronger person. this is my experience.

Mannie
Posts: 51
Joined: Oct 2008

I've been procrastinating on replying but I totally get what your saying. I'm not a grandma trying to tell you how it's been a wonderful experience taking care of my husband and that a grade 2 astrocytoma is not cancerous. Let me tell you a few things about myself and my tumor to start off. I was 25 when I was diagnosed with a grade 2 astrocytoma, I'm 28 now. I had surgery, 42 radiation treatments, and chemotherapy 21 out of 28 days for 13 months. So, grade 2 is cancerous and I was under the impression from my doc that it always is. I had chemo because my tumor is extremely rare, it has the same genetic make up as a GBM (glioblastoma) and that's what my original diagnosis was. After 2 1/2 years from my diagnosis I still get MRIs every 3 months and I still see my surgeon too because of the seriousness and rarity of my tumor. My tumor divides every 8 weeks even though it is a grade 2. That said, grade 2 tumors are serious and are nothing to scoff at.

You aren't negative at all. It would be crazy to be positive every second or every day. Only crazy people are positive like that. That's way too much pressure to put on someone who has recently been diagnosed with their own mortality. Trust me, I know, I've been there. I wanted to tell ppl who would tell me to be positive every 30 seconds where they could shove that "advice" because they really don't understand how annoying it is to be told that constantly.

I can also understand not wanting a relationship with someone. I have experienced all of those thoughts and feelings already myself. I still do, more now than before because I was too sick to think about it before. I recently starting dating a guy I've known for about 14 years and I worry about dying on him. Even more important than dying on him though, I hate even thinking about what my son's life would be like without his mother and I often wonder why God would give me this wonderful child just to have him grow up without a mom. I feel great and don't think about that most of the time but once in a while I will ponder that idea. I know all too well how you feel but I'm sure everyone thinks about this, whether they're willing to admit it or not. I'm just a straight shooter because it's important for other survivors to realize that they aren't alone in the "crazy" things they think. I think having cancer takes your mind into some dark places you'd rather not go but that's part of the healing process too and it takes time.

My tumor will never be completely removed because surgeons can't just cut out chunks of brain but I'm doing quite well.

tommybear
Posts: 112
Joined: Oct 2009

I really appreciate your response and your honesty. Thank you. All we can do is to hang in there, right?

lilmissy
Posts: 3
Joined: Oct 2009

They did remove all they saw both times. during the second surgery in 2007, they left the wafers in there to disolve and kill whatever they could. I have had what they call irritation since then . But I just celebrated my frist chemo free year since 2006.

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

I agree. Before brain surgery I told myself: If I can do this, I can do anything.

Before my second brain surgery I told myself: Hey, if I could do it last time I could do it again.

Now when things freak me out I just think: Hey, it's not brain surgery.

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

I agree. Before brain surgery I told myself: If I can do this, I can do anything.

Before my second brain surgery I told myself: Hey, if I could do it last time I could do it again.

Now when things freak me out I just think: Hey, it's not brain surgery.

tommybear
Posts: 112
Joined: Oct 2009

Not really funny, but it should be the brain tumor survivor's motto!

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