frustrated and needing to vent !

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katenorwood
katenorwood Member Posts: 1,912
Hello everyone,
I received a phone call today from my onologist's nurse. And was told that the pressure issues showing in my optic nerves are not related to my cancer. I asked how he came to that conclusion without doing the specific tests needed. Blood flow can be effected from a number of issues related to my surgery, and probable spread. I have a CT set up through them already because he is thinking the cancer is spreading. I needed a CTA and lumbar puncture. I was told to go through my PA for these tests, so that there is one doctor doing and knowing my case. GOOD LORD ! I asked if I had a primary there ? Was assuming (a cancer center should have a team) I did. I am very upset ! Is it they are not sure how to treat ACC and are unwilling to learn. Once again feel like I'm up the proveribile creek without a paddle ! I am going in to my clinic next Tuesday, and planning on getting a second opinion. (Mayo) Sorry for venting but feel so lost once again.

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  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    what to do
    Katenorwood,

    It is no wonder you are frustrated, I would be too. I was just lucky or very fortunate that my wife took hold of the reins as things got over my head. My assortment of doctors was not perfect, but they did pull me through. Getting a second opinion sounds like a good move, good luck.

    The fewer the complications the better.

    Best,

    Matt
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Vision Problems?
    My wife had a pituitary adenoma, which pressed on her optic nerves. It produces a very unique symptom. The patient losses her peripheral vision. Looking through one eye at a time, she COULD see towards her nose but was completely blind to the side away from the nose.

    My wife could see just half the letters on a standard eye chart. The half toward her nose. In spite of the fact that half of her visual field was missing, two board certified ophthalmologists missed the diagnosis.

    The end of the story was that the diagnosis was finally made, she had the tumor removed and her vision has been restored. The optic nerve started functioning once the pressure was removed.

    The narrowing of the visual field is a symptom to a serious yet treatable brain problem.

    You can check your own visual field. Small abnormalities might be missed but substantial defects will be noticed. However, since these problems are about 1/300000, not all physicians will be aware of the significance of the visual loss.
  • jim and i
    jim and i Member Posts: 1,788 Member
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    So sorry you are having
    So sorry you are having these problems. My husbands RAD doctor may not have known how to treat the condition but he did the CT to find out the problem and then referred him to a neurologist who did the lumbar puncture and surgery. His was water on the brain. I pray Mayo is more helpful.

    Debbie
  • hwt
    hwt Member Posts: 2,328 Member
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    Sorry to hear, I know that
    Sorry to hear, I know that has to be frustrating. If you are headed to Mayo you will be in excellent hands.
  • Jan Trinks
    Jan Trinks Member Posts: 477
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    Sorry for your confusion
    Glad you're going for second opinion. Not familiar with your type of cancer. However, considering the basketcase I was with Charlie's we were truly blessed with his onc. and his rad onc. #1 his oncologist is 24/7 medicine and so up on all the latest research and basically a walking encyclopedia so didn't experience the difficulties you're going thru. I hope and pray you get the answers you need. Good luck and God Bless!

    Jan (Basketcase)
  • katenorwood
    katenorwood Member Posts: 1,912
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    Sorry for your confusion
    Glad you're going for second opinion. Not familiar with your type of cancer. However, considering the basketcase I was with Charlie's we were truly blessed with his onc. and his rad onc. #1 his oncologist is 24/7 medicine and so up on all the latest research and basically a walking encyclopedia so didn't experience the difficulties you're going thru. I hope and pray you get the answers you need. Good luck and God Bless!

    Jan (Basketcase)

    Thank you for all your kind words !
    Hey everyone,
    I was talking with my sister, and she plainly told me....Kate fire them. I said what ? And she repeated fire them. I felt a calmness come over me and said yes you're right. So I will be moving on to Mayo. I need to collect not only my thoughts but my records now. My clinic recently linked with the Mayo, but something tells me I should have all this in my files myself any way. (just in case) I'm not going to burn my bridges though because if I can do treatments 70 miles from home instead of 300 miles from home it would be wonderful. So tactfully going to ask for a referral. And than have the Mayo doctors take the reins for treatments.
  • hwt
    hwt Member Posts: 2,328 Member
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    Thank you for all your kind words !
    Hey everyone,
    I was talking with my sister, and she plainly told me....Kate fire them. I said what ? And she repeated fire them. I felt a calmness come over me and said yes you're right. So I will be moving on to Mayo. I need to collect not only my thoughts but my records now. My clinic recently linked with the Mayo, but something tells me I should have all this in my files myself any way. (just in case) I'm not going to burn my bridges though because if I can do treatments 70 miles from home instead of 300 miles from home it would be wonderful. So tactfully going to ask for a referral. And than have the Mayo doctors take the reins for treatments.

    Mayo
    I assume you're going to Rochester. My brother was treated there for two primary cancers. I was so impressed with how they have a "team" that work so closely together. Appts. with doctors, tests, surgery, were planned with precision because of the travel. They consider the patient and their family as a whole. Not to mention the place is spotless! My brother is now 2 years cancer free and they said he could transfer to hometown for follow-ups but he ops to continue flying to MN. I can't blame him. I have been there for his surgeries and always feel that Mayo was set in the middle of Mayberry USA. I think you made a great decision.
    My rad doc here just told me to certain the ONC scheduled my scan because there are 3 cooks in the kitchen when they add the surgeons and he didn't want it to fall thru the cracks. That wouldn't happen at Mayo.