I need some answers please!

mermaid678
mermaid678 Member Posts: 10
in Brain Cancer #1
Hello all, My boyfriend is 23 years old and recently diagnosed right before christmas with stage 2 astrocytoma. His tumor is the size of an orange right on top of his thalamus. All of the doctors we have seen (3 of them) have said its inoperable. He was put on anti seizure medicine keppra and he has not had any seizures since he started it. He got a biopsy in early jan and the doctors said we just have to get MRI's every 3 months to monitor its growth. It is growing more on the left side and slowly closing his 3rd ventricle. One doctor said 37% of people with this tumor live for 5 years. The next doctor said it might not be up until 10 years before it closes off his ventricle and he will then put a shunt in his brain to open up the ventricle and then receive chemo and radiation. I feel like an inoperable tumor is a death sentence and am very scared. I have not read hardly any articles about inoperable tumors. Just scared and need answers please! -Susan

Comments

  • connsteele
    connsteele Member Posts: 232
    #2
    So sorry to hear about your
    So sorry to hear about your boyfriend. And I can understand how scared you and he must be. I don't want to give medical advice as I'm not a doctor. Ordinarily I would say get a second opinion but it looks like you've gotten a second and third, and they all agree. So, believe it or not, that's good. Some of us get second and third opinions only to get different, and sometimes conflicting, opinions. One question: were all the docs you saw associated with a major research hospital and we

    re they neuro-oncologists? If so, then I would say you've done about everything you can and have gotten sound medical opinions.

    From what I've learned from all of our experience, a grade II is not the worst-case scenario and if you look through these posts on this list, you'll find lots of people who have had inoperable tumors, still leading a productive and full life years after the diagnosis.

    Our son has a grade III astrocytoma, also inoperable (surgery was able to dubulk the main tumor and get enough tissue for a biopsy). Before surgery he had major mental confusion and a seizure which prompted the trip to the ER, but no problem with balance. After the surgery he had mild balance problems. But it was the radiaiton that caused major problems with balance and fine motor, which he still deals with today.

    I know when you get a dx like this, you want to fight it with everything you can, but if there had been anyway we coud have avoided radiation and surgery, we would have opted for that. But we had no choice considering his dx.

    All the best to you and your boyfriend is lucky to have such a caring person to help him through this.

    Connie
    m/o David, age 34
    dx AA3 on 4-13-11
  • mermaid678
    mermaid678 Member Posts: 10
    #3
    connsteele said:

    So sorry to hear about your
    So sorry to hear about your boyfriend. And I can understand how scared you and he must be. I don't want to give medical advice as I'm not a doctor. Ordinarily I would say get a second opinion but it looks like you've gotten a second and third, and they all agree. So, believe it or not, that's good. Some of us get second and third opinions only to get different, and sometimes conflicting, opinions. One question: were all the docs you saw associated with a major research hospital and we

    re they neuro-oncologists? If so, then I would say you've done about everything you can and have gotten sound medical opinions.

    From what I've learned from all of our experience, a grade II is not the worst-case scenario and if you look through these posts on this list, you'll find lots of people who have had inoperable tumors, still leading a productive and full life years after the diagnosis.

    Our son has a grade III astrocytoma, also inoperable (surgery was able to dubulk the main tumor and get enough tissue for a biopsy). Before surgery he had major mental confusion and a seizure which prompted the trip to the ER, but no problem with balance. After the surgery he had mild balance problems. But it was the radiaiton that caused major problems with balance and fine motor, which he still deals with today.

    I know when you get a dx like this, you want to fight it with everything you can, but if there had been anyway we coud have avoided radiation and surgery, we would have opted for that. But we had no choice considering his dx.

    All the best to you and your boyfriend is lucky to have such a caring person to help him through this.

    Connie
    m/o David, age 34
    dx AA3 on 4-13-11

    thank for replying
    The third opinion is from a cancer research hospital. But there is a huge research hospital about 3 hours away that has a big area for brain tumor study. My boyfriend is being stubborn though and doesnt want to drive that far and it makes me angry. I agree that it is good that they are putting off chemo and radiation as long as possible but i hate just having to wait knowing there is nothing being done to the tumor.

    The way we found out about it is over a year ago we were sleeping and i awoke around 4 am to Mike making weird choking sounds in his sleep. I turned the lights on and asked him what was wrong and he just stared at me. When he tried to speak it was random words that didn't make sense he was saying like car.....red.....tire. Just didnt make sense so I called 9-1-1 they came, gave him tests and said everything was fine. Well this episode happened 2-3 more times within the year and finally we went to the doctor and he recommended a CT and MRI scan and thats when they found the tumor.

    Was your son having seizures or anything? I'm happy to hear they could debulk some of David's tumor thats great. I did hear about how radiation did effect things especially when on the brain. Where was his tumor located on the brain?

    Best wishes for your family - Susan
  • kulaken
    kulaken Member Posts: 14
    #4
    Personal Faith
    As a Diagnosed Glimoblastoma patient. I can personaly tell you fear is a normal reaction , for all parties involved , @ 23 all i can imagine @ 49 , is similar fear.

    My tumor is operable , ( or so they say ) i will loose a good part of my eyesight if extraction is involved , I have opted for radiation to help with longevity , rather than a craniotomy , I am going to try the Gama knife procedure , now that 20 bouts of ( full brain )radiation , shrunk my tumor in 1/2 .. now it will fit the 2mm range for the machine , im in hopes that you and your boyfriend can get through this hard time , keep me posted ,, your not alone , Hang in there ,

    Aloha Susan ,

    KEN
  • connsteele
    connsteele Member Posts: 232
    #5
    mermaid678 said:

    thank for replying
    The third opinion is from a cancer research hospital. But there is a huge research hospital about 3 hours away that has a big area for brain tumor study. My boyfriend is being stubborn though and doesnt want to drive that far and it makes me angry. I agree that it is good that they are putting off chemo and radiation as long as possible but i hate just having to wait knowing there is nothing being done to the tumor.

    The way we found out about it is over a year ago we were sleeping and i awoke around 4 am to Mike making weird choking sounds in his sleep. I turned the lights on and asked him what was wrong and he just stared at me. When he tried to speak it was random words that didn't make sense he was saying like car.....red.....tire. Just didnt make sense so I called 9-1-1 they came, gave him tests and said everything was fine. Well this episode happened 2-3 more times within the year and finally we went to the doctor and he recommended a CT and MRI scan and thats when they found the tumor.

    Was your son having seizures or anything? I'm happy to hear they could debulk some of David's tumor thats great. I did hear about how radiation did effect things especially when on the brain. Where was his tumor located on the brain?

    Best wishes for your family - Susan

    The only seizure he has had
    The only seizure he has had so far (thankfully) was the one he had right at the beginning of all this, the one that prompted us to take him to the ER where they made the initial diagnosis. It is an anaplastic astrocytoma, and is located in his cerebellum. As a result, it has affected his balance, fine motor and speech. He completed three months of physical and occupational therapy the last of Dec.
    Now it's just a waiting game, from one MRI to the next. Our next "Day of Reckoning" is Feb. 20. Starting to get nervous already.
    Take care, Connie
  • stacy0611
    stacy0611 Member Posts: 14
    #6
    Astrocytoma II Right Frontal Lobe - radiation and temodar
    I am a 43 year old single mom who was diagnosed with a grade II Astrocytoma in June of 2010. The size is from the skull above my right ear to the center ventricle. (side of my skull to the center of my brain). The "core" is the size of a golf ball and the remainder is fibrillary. It is inoperable. I was given three options for treatment. The first was to wait and see...every three months back for MRI. Second, was 5 and 1/2 weeks of radiation (standard care). Third, I could do a randomized study with temodar, a chemo drug that is thought to help in conjunction with radiation. I decided to be as aggressive as possible and went for the temodar study. I was randomized to get both temodar and radiation and I have to say, treatment went well for the most part. However, I do need to say that I think I was unprepared to ask the right questions at the time. I had just found out about my cancer and was spinning. After my "bulk" round of temodar, I did two rounds of 28/5. I became very ill from the temodar and needed to be hospitalized. Upon discussing with my oncologist, I discontinued the chemo. When I started my treatment, I didn't think to ask what my quality of life would be, only quantity. I am learning how to deal the symptoms that come and go, the symptoms that stay and the symptoms that are to come. I love to hear from people that are going through cancer/similar things that I have on my journey!
    Stacy

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