Question/Suggestions

help01
help01 Member Posts: 7
edited March 2014 in Brain Cancer #1
Hi I do not do this much. So forgive me if I am to wordy. Where to begin...

A brief history: I have an inoperable malignant astrocytoma/glioma brain stem tumor. I am currently in remission for going on almost 10 years. :) I received six weeks of radiation, which seems to have slowed the growth. This is monitored yearly via labs and MRI. My last scan revealed a spot on my brain. But it is being watched I may just be scar tissue the has not been seen before because they changed my MRI's to a thin cut scan. I am optimistic(sp) :) I was also recently diagnosed with early avascular necrosis and osteopenia in late 2003 and in 2004 with diverticulitis. I also have cysts like or dermoids on my ovaries. I am 28 years old with two healthy boys and a very supportive husband.

For almost six years that I can remember I have had the following symptoms -shortness of breath, chest pains, sweating, AB pain, bloating, headaches, joint and muscle pain just to name a few. My doctor has done Chest X-rays of my chest and not seen anything so recently I had a Gallium scan with tomography and a CT scan. The CT was without contrast and showed a 4mm non calcified solitary nodule in the inferior left lingula (left lung base). It also showed a 13mm right adrenal nodule with two small lesions in the right lobe of the liver near the dome. The gallium scan showed an accumulation in the mediastinum, within the volume of the myocardium with possible cardiac valvular uptake. This one doctor I have been to says he will watch everything for the next two years via CT and MRI scans w/out contrast. This seems odd to me though it may be a normal process. Some questions: Could asbestos cause any of these problems? I was exposed to it for two years -or- is this most likely something minor? What kind of doctor could best answer these types of questions? One last thing my white blood counts are very low so he does not think any of this is infection. But we are scheduled to recheck it in early July. Thank you all for your time. If anyone is in or has had similiar things happening any advice, experience or direction would be a greatly appreciated during this troubling time. Thanks again and god bless.

Comments

  • TAremote
    TAremote Member Posts: 56 Member
    #2
    Good Morning. I have a stage 4 glio blastoma. brain cancer. I can't answer any of your questions, but can only say it sounds like your not comfortable with what the DR's are saying to you about the treatment. I would go get another opinion. You can never be to safe. I have seen many people that if they took the advise of one Dr they would not be alive today. A good Dr wont have any problems with you getting a second opinion.
    I wish I was smarter on what you have described.
    Take Care, and God Bless
    Tom
  • magicalsysop
    magicalsysop Member Posts: 1
    #3
    I can understand what you are saying I have been there. I just got operated on at UofM ( University of Michigan) to where all they were suppose to do is upgrade my vpshunt and I caught spinomenogytis. I have a brainstem astrocytoma along with spinomenagytas with hydroencyphlaistas. spare with me the spelling I am not a Doctor just a computer tech. I have had this braintumor since I was 12 and I am 35 now. I was the very first patient on a MRI and the very first patient with AZQ. I can tell you some pretty scary storys about doctors but I have always lived under one princapal and that is if it is your time it is your time. Live life to the fullest with the theory of the glass always being half full. I have given speech to hundreds on the topic of diet and happiness but I will always give it back to one being and that is the almighty. They is no doctor that can save you if the man above says it is not going to happen. I love all but I love the man above most. I just spent 3 months in at UofM. with a month in CCU because of my heart not wanting to responsed to my brain I just got married to my loving wife and to this day and all the days to come there is one that I am thankful to.
    Well sorry about leaving the topic I just wanted to let you know to keep your eyes on the one above and your heart on a postive view. I have seen alot of people come and go with cancer and have noticed that if you keep a postive outlook that your chance are far better then if you don't.
    sorry about babbling.
    Thankyou
  • help01
    help01 Member Posts: 7
    #4
    TAremote said:

    Good Morning. I have a stage 4 glio blastoma. brain cancer. I can't answer any of your questions, but can only say it sounds like your not comfortable with what the DR's are saying to you about the treatment. I would go get another opinion. You can never be to safe. I have seen many people that if they took the advise of one Dr they would not be alive today. A good Dr wont have any problems with you getting a second opinion.
    I wish I was smarter on what you have described.
    Take Care, and God Bless
    Tom

    Thank you for your suggestion. I brought all of my records and scans to Florida to my original doctor. I should know what to do sometime next week. This doctor has treated me since this all began he knows my brain and has been a father to me. Thanks again for your reply and helping me. I wish you the best in your journeys ahead. God Bless.
  • help01
    help01 Member Posts: 7
    #5
    magicalsysop said:

    I can understand what you are saying I have been there. I just got operated on at UofM ( University of Michigan) to where all they were suppose to do is upgrade my vpshunt and I caught spinomenogytis. I have a brainstem astrocytoma along with spinomenagytas with hydroencyphlaistas. spare with me the spelling I am not a Doctor just a computer tech. I have had this braintumor since I was 12 and I am 35 now. I was the very first patient on a MRI and the very first patient with AZQ. I can tell you some pretty scary storys about doctors but I have always lived under one princapal and that is if it is your time it is your time. Live life to the fullest with the theory of the glass always being half full. I have given speech to hundreds on the topic of diet and happiness but I will always give it back to one being and that is the almighty. They is no doctor that can save you if the man above says it is not going to happen. I love all but I love the man above most. I just spent 3 months in at UofM. with a month in CCU because of my heart not wanting to responsed to my brain I just got married to my loving wife and to this day and all the days to come there is one that I am thankful to.
    Well sorry about leaving the topic I just wanted to let you know to keep your eyes on the one above and your heart on a postive view. I have seen alot of people come and go with cancer and have noticed that if you keep a postive outlook that your chance are far better then if you don't.
    sorry about babbling.
    Thankyou

    Thank you - I understand what you are saying. I also believe only god is going to keep me here. I am very optimistic but doctors frustrate me sometimes I know they are only human to. I guess I have just had one to many bad experiences. It took doctors a year an a half to figure out my aliment then when they decided to operate they told my folks oh it is probably just a blood spot on the brain. Yet I had seizures since I was 20 months of age they never thought of doing an MRI until the last resort before admitting me in a loonie farm because they did not know what was wrong. I could not walk, stay awake, I was very moody and a normal teen. We laugh about that today. I do not remember where I was going with this. I guess just to say thank you and may god bless you and your family.

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