I Do Not Understand

blessings1020
blessings1020 Member Posts: 54
edited March 2014 in Breast Cancer #1
Before this is all finished, I hope you all do not find me to be neurotic...

I posted about my mastectomy and the consequent excruciating pain I have been experiencing for the last 3 months (almost 1 yr post op now) and I have a couple of questions:

In a letter from my oncologist to all my other doctors, he states at the time of my mastectomy "a left sentinel lymph node biopsy was performed". What does this mean? All the surgeon told me was that 12 lymph nodes were removed.

He also states that I had a Stage II tumor and states "there were multiple unfavorable prognostic indicators". Huh?

I would also like to ask what the following means:

"Estrogen receptors negative"
"Progesterone receptors negative"
"p53 positive"
"HER2/Neu weakly positive"
"HER2/Neu with FISH (what is FISH) not done due to lack of remaining tissue in the block" (what does this mean?

I would also like to know (and I hope I am not overwhelming you) what the MUGA scan means when the left ventricular ejection fraction is 53.9 percent. Does this have something to do with my heart?

I find it absolutely pitiful that doctors don't even explain what all this means...just hand you a piece of paper and because you do not understand, it could sound so much worse than it actually is. I *do* have the ability to comprehend what I read and I have enough other health problems that I understand most of what I read.

Lost all my trust in this oncologist now. I know my family doctor and am going to rely on him from now on...he is the doctor sent from Heaven who will make house calls and has promised that even after he retires he will take care of me (that is, if I outlive him).

Thanks so much for listening to my ramblings. I have had all this bottled up inside me for almost a year (a year in April). I did not want to scare my family or put them though any more than I already had.

Blessings

Comments

  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #2
    I have a regular doctor to whom I've gone for many years, but please, you need to find another oncologist, bring all of your medical records to the new oncologist and discuss your questions.

    You came upon a lemon. It was the most unfortunate time for that to happen. You need someone who is interested in helping you find the very best path for you to take.
    Hugs,
    Denise
  • blessings1020
    blessings1020 Member Posts: 54
    #3
    DeeNY711 said:

    I have a regular doctor to whom I've gone for many years, but please, you need to find another oncologist, bring all of your medical records to the new oncologist and discuss your questions.

    You came upon a lemon. It was the most unfortunate time for that to happen. You need someone who is interested in helping you find the very best path for you to take.
    Hugs,
    Denise

    Thanks again, Denise. I visited breastcancer.org because I am so very confused about the findings in my oncologist's letter to my other physicians and thought I could find some answers there. I guess what I really need to do to start is to obtain an actual copy of my pathology report (have you ever noticed that these doctor's want to give you no access to your own medical files...why is that?) and then go from there.

    With all the pain I have been experiencing lately and the hot spot on the bone scan and the spot on the PET scan, I would really like to know if I am more at risk for this cancer spreading.

    I am one of these people that wants to be informed. Don't surprise me or lie to me, just give it to me straight and then I can deal with it and begin to make plans.

    This is all so overwhelming...even after almost a year, I am still learning and I am still "waiting" for this disease to creep up on me again.

    Why this oncologist seems to dismiss anything I feel or have to say is beyond me...HE is the one that has informed me that since my tumor was "so large and so aggressive that it is more than likely the cancer will show up somewhere else". If it does, I will have to deal with it but I am more comfortable knowing what is going on. Don't keep me in the dark, this is MY life we are dealing with here.

    I do not expect to be pampered or coddled, but at least treat me like a human being and give me some respect!

    I have to get to the bottom of all this pain I am having. It is keeping me in bed most days and I want to live my life again.

    I hope you are getting some sleep, Denise, looks like you were up pretty late last night. Sounds like me, I am up at all hours of the night wandering around the house, on the computer, watching television...is this insomnia?

    Have a great day.

    Diane
  • jhope
    jhope Member Posts: 58
    #4
    Hi Blessings! I can not stress this enough!!! FIND ANOTHER ONCOLOGIST. It is not your job to have to figure out what all this medical information means. Your family doc might be absouluetly wonderful, but you need the expertise of a well informed oncologist who will take the time to talk with you. You are not neurotic. I can not go into the entire long story but I wish I had taken my own advice a year ago. FIND A NEW ONCOLOGIST! You deserve the best, god bless, and good luck, jhope P.S. I do know what sentinal node and negative ER factors are if you want to email me privately. julia
  • blessings1020
    blessings1020 Member Posts: 54
    #5
    jhope said:

    Hi Blessings! I can not stress this enough!!! FIND ANOTHER ONCOLOGIST. It is not your job to have to figure out what all this medical information means. Your family doc might be absouluetly wonderful, but you need the expertise of a well informed oncologist who will take the time to talk with you. You are not neurotic. I can not go into the entire long story but I wish I had taken my own advice a year ago. FIND A NEW ONCOLOGIST! You deserve the best, god bless, and good luck, jhope P.S. I do know what sentinal node and negative ER factors are if you want to email me privately. julia

    Julia...I thank you for your reply and all of you *are* right. I need to pull myself up and find another oncologist...someone I can trust. Spent another day in bed with this severe pain and it is really getting me down.

    I am attempting to email you as I would really appreciate an explanation of some of the things I do not understand (which is almost all of it) but it does not seem to be working. I am new at this, can you tell me what I need to do to email you?

    Diane
  • jhope
    jhope Member Posts: 58
    #6
    blessings, to email anyone on network, go to "your CSN start page" on left. then at right side on page it says send or recieve email and there is a directory, just put in someones username. I sent you an email. you access this also from your "start page", julia
  • blessings1020
    blessings1020 Member Posts: 54
    #7
    jhope said:

    blessings, to email anyone on network, go to "your CSN start page" on left. then at right side on page it says send or recieve email and there is a directory, just put in someones username. I sent you an email. you access this also from your "start page", julia

    Thank you so much...I'm such a dunce sometimes when it comes to the computer!

    Have a glorious day.

    Diane
  • lynne40
    lynne40 Member Posts: 87
    #8
    blessings1020 said:

    Julia...I thank you for your reply and all of you *are* right. I need to pull myself up and find another oncologist...someone I can trust. Spent another day in bed with this severe pain and it is really getting me down.

    I am attempting to email you as I would really appreciate an explanation of some of the things I do not understand (which is almost all of it) but it does not seem to be working. I am new at this, can you tell me what I need to do to email you?

    Diane

    Diane, You can click on the E mail icon on the bottom of anyone's post that you want to respond to. Less going back and forth. I have AOL so maybe the icon isn't on all servers, I'm not sure. Hope this helped,
    Lynne

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