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Is No Treatment an option?

kempenl
Posts: 13
Joined: Jan 2005

My husband was recently diagnosed with anaplastic astrocytoma -G3. He's had surgery - surgeon said "removed all that we safely could remove". (right frontal lobe) they have not told us how big, or what percent they feel is still there.
He has appts. with neurologist\neuro psycholgist\radiation oncolgist next week. We want quality not quantity.
We want to know prognosis with no treatment - is that a valid question? Neither of us wants to waste valuable time with a horrible stuggles and side effects for extra "weeks" or "months".

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

It is important to find out all of your options, whether they include treatment or no treatment. Your husband's oncologist will most likely provide you with statistical information regarding his tumor, grade, how if affects a particular part of the brain, etc.

Remember, there are no stupid questions, but it is best to be prepared with a written list of questions you may collect over the next few days. You might have your husband ask the questions and have you take notes to refer to later.

Liz

kempenl
Posts: 13
Joined: Jan 2005

We have been making a list of questions - we basically want to ask how big the tumor was and what percent they feel was removed - then we want to get into prognosis for someone his age (59). We like to know prognosis with NO treatment, WITH chemo, without chemo, with radiation, etc.. someone on this list suggested we ask the statistics of anaplastic astrocytoma mutating to grade 4. We also want to ask how much time we have to decide.
thank you again for your reply -- if you can think of other questions we should be asking please let us know.

Mannie
Posts: 51
Joined: Oct 2008

My tumor was in the right frontal lobe also. After I had surgery my oncologist told me that I had time to pause and think about my options because the tumor was mostly removed. No one ever told me how much was there or how much was removed and I was okay with that because I felt 100% better when I was still in the OR getting staples put in my head because the pressure was finally gone. When I was getting scans during treatment I was concerned about how much was still gone because my docs told me that some brain tumor will always be there, that's just how it is for everyone with a brain tumor. I think it was more like the tumor bed was still there than the tumor itself was there but I'm still not sure. Now that I've been finished with treatment for almost a year I don't worry about what was left and I still get scans every 3 months. I figure my docs will see what's going on if anything new is happening.

I did opt for the 42 radiation treatments and 13 months of chemotherapy. I was treated as if my tumor was a glioblastoma because my tumor is very uncommon and there is no common protocol and it is a very aggressive tumor and divides exactly like a GBM although it is an astrocytoma. Unfortunately, not many people live long enough for it to become a 'high grade' astrocytoma because it is so aggressive. Many people die from this kind of tumor when it is Grade 2. So, my stats were based off of a grade 4 and I have another thing going on called a PTEN mutation that made my prognosis poor but I'm young and chose the treatment. I also eat healthy and try to stay active- I have a 3yr old so it's not that easy to do either.

Prognosis is not an unreasonable thing to ask. Doctors don't usually just offer that info anymore though. Although there are a million factors to consider, your husband still has his youth working for him; that is something to not overlook.

I'm sure you've already seen quite a lot of effects the tumor has had on him, probably before he realized it. That was the case with me at least, I thought I had hid my deficits/changes well and I did not. Some of those effects may not completely go away, I hate to say it, but that's just how the new normal might be. That's one thing that I sometimes get annoyed with.

kempenl
Posts: 13
Joined: Jan 2005

Thank you for your comments; they were very interesting.
Can you tell me about the deficits and\or changes in personality or cognition that you've had to deal with. thank you so much.

Mannie
Posts: 51
Joined: Oct 2008

Well, a few things that I've noticed are that I'm more impulsive at times and it's really hard to control. They haven't been anything that's caused physical harm but things like spending, although I haven't bounced any checks it's discouraging to me.

My memory is poor. I'm not sure if that's a side effect from my seizure meds though, I think it is. It got much worse after I started taking Topamax. My mom and I are in a research study that measures the effects of stress on caregivers of brain cancer patients and she said that I don't even know have any recollection at all about things that I've forgotten. That may seem like common sense but they're sometimes things that I did or places that I went and it really bothers me. I will forget to eat sometimes. I've recently noticed that it takes me a long time to read and it takes me a while to understand what I've read.

I have to write things down constantly, not just because I will forget but because I become EXTREMELY overwhelmed very, very easily now. I get anxious when I have to do several things if I don't write them down. I have to mentally plan them out or take someone with me so they can help. Having a tumor in the organizational/higher functions/personality part of your brain really sucks.

I was always very laid back and nonchalant, a very happy-go-lucky person until about 8 months before I was diagnosed. Then I became anxious and depressed a lot. My PCP at the time diagnosed me as being bipolar and gave me some Xanax to take when I felt anxious. I told her that wasn't my problem and told her I needed a scan of my head because something was wrong. She never listened to me. My mom finally took me to the ER because I was so sick thought I was dying. My personality hasn't ever really returned to what it was prior to diagnosis. I'm moody now. I don't know why, but I am. I go to a brain cancer support group and it seems that just about everyone there is too; that's a new normal for all of us that's really hard to deal with. I'm sure screwing around with the brain has something to do with it, HaHa! I'm not a raging maniac and I don't want to give that impression but I wanted to be honest. I never did take the Xanax, I still have them here somewhere.

Some of it could be hormonal, getting zapped in the front near your pituitary gland could contribute to that. It could definitely be med side effects; I've had terrible side effects from all of them. It could be sleep deprivation; I do have a little kid who wakes up at the crack of dawn and I usually don't get to sleep until around midnight. Could be effects from chemotherapy or surgery.

Does your husband have a large tumor? Mine was not large, it was small from what I've heard. But apparently to have a brain tumor you need to have played sports so you can tell people what size ball it was. I didn't play sports so I have no idea what to say. Someone said 2cm is the size of a golf ball, someone says 3 cm. is the size of a baseball, who knows? I'm confused about that analogy, it doesn't mean anything to me.
Mine was 5cm.

darrahchris's picture
darrahchris
Posts: 9
Joined: Jun 2009

Any questions you have are the RIGHT questions, no matter how unimportant u think they are. If the question is on your list, it IS IMPORTANT. ASK EVERTHING!!! And write down every answer. My first few visits, we even brought a tape recorder. Oncology nurses are VERY well informed & can answer alot of ?'s. I go 2 M.D. Anderson in Houston and they have a great, informational website and a GREAT brain and Spine Center with a wealth of info. Check it out.
Also NBTF (National Brain Tumor Foundation.
Good luckto u!
Smile, Chris

Priash
Posts: 22
Joined: Apr 2009

Hello, I also have the same cancer as your husband. I will be finishing my chemo this June 09 and I have been feeling alot better. Just remember everyday is a bless day. I have two girls in college and if medicine give me more time with them and my family, I feel truely blessed. I always say live in the "now".

God Bless
Priash (Lydia)

kempenl
Posts: 13
Joined: Jan 2005

We now know that about 50% of the tumor remains. He's going to start radiation (6.5 weeks) and be on Temodar for 12 months. I wonder why some people are on Temodar for 6 months, others more? Tumor was 8cm x 2.5cm x 5 cm -- but not solid of course so this is just an area where it's 'creeping around'. It's help to know about some of the side effects he may be having. He has to take Lovenox shots for a blood clot - he sure dislikes those shots. What makes his shakey? Is that the decadron?

Karen8418
Posts: 1
Joined: May 2009

Hello everyone. My husband (59)was diagnosed with lung cancer though it had already metastasized to the brain. Initially the doctor thought he'd had a mild stroke because he had no strength in his hand, couldn't hold a pen, was speaking slowly and seemed to have to concentrate before talking. At the ER they took a Ct scan and found extensive swelling due to a brain tumor. That was on April 24. After a hospital admission for a week, they found the lung cancer. Both tumors are inoperable. The oncologist ordered a Petscan which, I suppose, you can say showed good results - no other areas of cancer. He just finished two weeks of radiation and now his meds (decadron)is being gradually lessened so he can start chemo. Now he's developing side effects - extreme weakness, involuntary shaking/spasms of his legs. He's frightened, angry and crying. So unlike the man who is always in control. He has an appt to see the oncologist next week (the md is on vacation this week) and my husband will not go back to the ER....he said this will pass. I did read that the shaking could be a side effect of the decadron. It seems to worsen as the day goes on and he tires or gets upset. Has anyone experienced this? My prayers go out to everyone.

darrahchris's picture
darrahchris
Posts: 9
Joined: Jun 2009

I was on decadron 4 three years. I blew up to 180 lbs, like a blo fish. I was energetic,ate constantly, cranky, all of it. Sounds like your hubby has severe side effects. If he's shaking. etc. I would consult your neuro. cause maybe his dose needs 2 be adjusted. My meds have 2 be adjusted all the time. Some people (like me & maybe ur hubby.) are more sensitive to meds. Lots of water gets those meds out of ur system faster. After I got of the decadron, I am now down to a svelte 127 pounds and a plate in my head! LOL
GOOD LUCK and keep laughing. Not just ur husband, YOU TOO! I think it's harder 4 the families than the patient.
You will b in my thoughts and prayers!
Smile, Chris

PBJ Austin
Posts: 346
Joined: Mar 2009

I am sorry I cannot answer your questions but I also wonder why some people are on chemo longer than others. My sister has just begun chemo and she will be on for 2 years. She is taking it 5 days a week then 3 weeks off.

Does anyone else know someone who is on chemo for 2 years? I assume this means her cancer is more advanced, but I sure hate to assume anything.

darrahchris's picture
darrahchris
Posts: 9
Joined: Jun 2009

I was given 5 years in 2000. Here I am in 2009 and I have been in remission 4 two years. I had 3 crainiotomies. My tumor was chemo & radiation resistant. You NEVER know.
But.........Your MD should have given u all the info u need. That part is shameful on his part. Worrying about test results is the WORST part. Maybe be more assertive!?!!
I wasn't getting the info I needed so I switched doctors & now everything is good and I'm well informed.
Laughter (seriously) is the best medicine!!! Laughter is one thing that they can't take from me. People don't understand why I had 2 have 3 brain surgeries. I tell them it's cause I'm so damn smart that they had 2 keep taking more out, so I'm like the rest of ya'll.
Try 2 keep laughing!!!
Smiles 2 you, Chris

darrahchris's picture
darrahchris
Posts: 9
Joined: Jun 2009

I had a different brain cancer than ur hubby. I had Oliodendraglioma. Every kind of cancer & treatment is unique just like every patient is unique and SPECIAL, Make sure they treat you bBOTH as special as YOU ARE! Also, I have found that u get more usable info from the oncology nurses sometimes. Don't be timid!!! There's no dumb questions when your in the fight 4 ur life!!!!!

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