Basic question re: prognosis

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CeeCee410
CeeCee410 Member Posts: 19
edited March 2014 in Breast Cancer #1
Do oncologists generally avoid giving a prognosis? I have yet to be given one, and have not specifically asked for one. Just wondering.
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  • leabow
    leabow Member Posts: 28
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    prognosis
    Mine did give me a prognosis. However, there are so many different types of breast cancer, maybe mine was easier to predict. Also, I ask every question that I am concerned about. Next time you see him take your list and ask these questions that are worrying you.
    I don't think our oncologists realize that the best medicine is knowledge and peace of mind.
  • sal314
    sal314 Member Posts: 599 Member
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    I Think It All Depends...
    on the oncologist. Seems fairly common from everyone that I've known, that many will not go there unless they are asked. Mine, however, gave me all the statistics for doing or not doing all the different treatments.

    So...if you really want to know, (and remember, it's all statistically speaking!, and there are always exceptions) you'll probably have to flatout ask him.

    Blessings,

    Sally
  • missrenee
    missrenee Member Posts: 2,136 Member
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    sal314 said:

    I Think It All Depends...
    on the oncologist. Seems fairly common from everyone that I've known, that many will not go there unless they are asked. Mine, however, gave me all the statistics for doing or not doing all the different treatments.

    So...if you really want to know, (and remember, it's all statistically speaking!, and there are always exceptions) you'll probably have to flatout ask him.

    Blessings,

    Sally

    My situation was a lot like Sally's
    I never really asked for a prognosis (I was Stage 3C with 10+ lymph nodes, so maybe I was too afraid). However, my oncologist explained the "statistical percentages" in favor of doing the type of chemo I did along with radiation therapy. All I asked her was, "Ok, Dr. ___, let's say I'm your sister--what treatment would you have her do?" And, I followed her advice to the letter.

    I also do believe that everyone's biological make-up and immune systems are so different. I really think only God knows for sure.

    Good luck on your journey.

    Hugs, Renee
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    missrenee said:

    My situation was a lot like Sally's
    I never really asked for a prognosis (I was Stage 3C with 10+ lymph nodes, so maybe I was too afraid). However, my oncologist explained the "statistical percentages" in favor of doing the type of chemo I did along with radiation therapy. All I asked her was, "Ok, Dr. ___, let's say I'm your sister--what treatment would you have her do?" And, I followed her advice to the letter.

    I also do believe that everyone's biological make-up and immune systems are so different. I really think only God knows for sure.

    Good luck on your journey.

    Hugs, Renee

    May depend on what you mean by "prognosis"
    I realized pretty early on that everything my oncologist could tell me was just probability of this, probability of that -- so, like Sally and Renee, I asked for statistics, and he was very forthcoming with me once I asked. We discussed statistics of choosing different treatment paths, and, after completing treatment, I asked him to break down for me my statistics for recurrence.

    Traci
  • roseann4
    roseann4 Member Posts: 992 Member
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    TraciInLA said:

    May depend on what you mean by "prognosis"
    I realized pretty early on that everything my oncologist could tell me was just probability of this, probability of that -- so, like Sally and Renee, I asked for statistics, and he was very forthcoming with me once I asked. We discussed statistics of choosing different treatment paths, and, after completing treatment, I asked him to break down for me my statistics for recurrence.

    Traci

    Mine gave me stats.
    I personally think that stats are misleading no matter what the stage of cancer we currently have. I'm stage 1 node negative so I had the OncoTypeDX test. My prognosis looks very good but then there are many stage 1 women who went on to stage 4. There are also stage 3 women who never progress to stage 4. I'm not trying to be negative...in fact what I'm saying is there is hope for all of us. Let's hang onto that. Happy Holidays!

    Roseann
  • sea60
    sea60 Member Posts: 2,613
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    Mine also gave me
    statistics and lot's of hope!!
  • seof
    seof Member Posts: 819 Member
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    It does seem like they give
    It does seem like they give a lot of information, but sometimes omit the bit we most want to know. It also seems that I often don't know what I want to know till I leave and start to process all I have been told. That's why I always kept a notebook to write down questions that occurred to me in between Dr. visits. Then I made sure I wrote down the answers and re-read what I wrote to the Dr. to be sure I understood the answer. So...if you want to know your prognosis, ask, but keep in mind that a prognosis is really an "educated guess" based on statistics...you may or may not fit the picture.

    seof
  • carkris
    carkris Member Posts: 4,553 Member
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    seof said:

    It does seem like they give
    It does seem like they give a lot of information, but sometimes omit the bit we most want to know. It also seems that I often don't know what I want to know till I leave and start to process all I have been told. That's why I always kept a notebook to write down questions that occurred to me in between Dr. visits. Then I made sure I wrote down the answers and re-read what I wrote to the Dr. to be sure I understood the answer. So...if you want to know your prognosis, ask, but keep in mind that a prognosis is really an "educated guess" based on statistics...you may or may not fit the picture.

    seof

    I did not ask so he did not
    I did not ask so he did not offer. I dont really want to know. I know it would worry me. I know myself and I would obsess
  • ShirleyCurls
    ShirleyCurls Member Posts: 51
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    No, but my Radiologist did...
    My oncologist said that, "I am a person not a statistic". She sees me as a long term survivor. Most published statistics are old, and don't always reflect current treatments. Also, there are are so many factors.

    On the other hand. My radiologist said, "you have X number of years to live". It really pissed me off, so I intend to prove him wrong.

    On my refrigerator I have a magnet, with Harrison Ford as Hans Solo. It says, "NEVER TELL ME THE ODDS!!.
  • Kat11
    Kat11 Member Posts: 1,931 Member
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    TraciInLA said:

    May depend on what you mean by "prognosis"
    I realized pretty early on that everything my oncologist could tell me was just probability of this, probability of that -- so, like Sally and Renee, I asked for statistics, and he was very forthcoming with me once I asked. We discussed statistics of choosing different treatment paths, and, after completing treatment, I asked him to break down for me my statistics for recurrence.

    Traci

    Mine was the same as Traci.
    Mine was the same as Traci. I did ask a lot of questions, still do. My ONC does her best to give me the best possible answer.
  • Katz77
    Katz77 Member Posts: 598
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    Like some here
    My onc doesnt really want to say. Doesn't want negativity in my brain.Lol
    After asking for the humpteenth time, stage3c. Already knew about all er's posi.
    My friend whos recently dx wants to know everything. Researches EVERYTHING. I research on a need to know bases. I would go insane from thinking to much.
    I work as a surgical tech, so when my surgeon said lymph node involvement,I knew that really sucked. So it is up to you how much info you want. If onc wont give it, go to medical records and get a copy.
    Funny now, but I did that. History report states, "the unfortunate Mrs. W___." Kind of spooked me, so dont really do that much anymore. Theres always a way to find out. Just be prepared. Hugs to you,Katz
  • carkris
    carkris Member Posts: 4,553 Member
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    Katz77 said:

    Like some here
    My onc doesnt really want to say. Doesn't want negativity in my brain.Lol
    After asking for the humpteenth time, stage3c. Already knew about all er's posi.
    My friend whos recently dx wants to know everything. Researches EVERYTHING. I research on a need to know bases. I would go insane from thinking to much.
    I work as a surgical tech, so when my surgeon said lymph node involvement,I knew that really sucked. So it is up to you how much info you want. If onc wont give it, go to medical records and get a copy.
    Funny now, but I did that. History report states, "the unfortunate Mrs. W___." Kind of spooked me, so dont really do that much anymore. Theres always a way to find out. Just be prepared. Hugs to you,Katz

    I read a surgeon report once
    I read a surgeon report once :"She is highly anxious and sees a therapist" Duh!!!!!!!!!!!!
  • CeeCee410
    CeeCee410 Member Posts: 19
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    carkris said:

    I read a surgeon report once
    I read a surgeon report once :"She is highly anxious and sees a therapist" Duh!!!!!!!!!!!!

    Prognosis
    Thank you, Ladies, for all your responses. I was able to derive something from each reply and I appreciate you taking the time. I've already gone through chemotherapy and had surgeries, and now I am nearing the end of radiation.

    What I meant by "prognosis" was the statistical probability of it coming back. I'm also curious to know when and how they determine whether there is no evidence of disease. As someone said here, the best medicine is knowledge. I personally feel that I can function much better in life knowing the odds rather than hanging on a shoestring of hope. That's just me.

    Happy Holidays, and thanks again!

    Cee Cee
    Stage III IDC/Lymph node involvement
  • lizzie17
    lizzie17 Member Posts: 548
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    but my surgeon did
    My surgeon, even on post-op visits, always talks about my prognosis, while my oncologist will kind of play it one visit at a time.
  • carkris
    carkris Member Posts: 4,553 Member
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    lizzie17 said:

    but my surgeon did
    My surgeon, even on post-op visits, always talks about my prognosis, while my oncologist will kind of play it one visit at a time.

    I dont talk to my oncologist
    I dont talk to my oncologist about these things as he is kind of a doom and gloom kind of guy. hasnt always been a great match for me. I rely on him to do what I need. he is very available to me, but no cheerleader. If this info is important to you ask, they will tell you.
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
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    CeeCee410 said:

    Prognosis
    Thank you, Ladies, for all your responses. I was able to derive something from each reply and I appreciate you taking the time. I've already gone through chemotherapy and had surgeries, and now I am nearing the end of radiation.

    What I meant by "prognosis" was the statistical probability of it coming back. I'm also curious to know when and how they determine whether there is no evidence of disease. As someone said here, the best medicine is knowledge. I personally feel that I can function much better in life knowing the odds rather than hanging on a shoestring of hope. That's just me.

    Happy Holidays, and thanks again!

    Cee Cee
    Stage III IDC/Lymph node involvement

    I agree with Sally...
    Seems most oncs don't volunteer that info, I think. Maybe because, especially early on, they don't feel they "know" us personally/intimately enough. Not every patient WANTS to know. It's the sort of info that can be pretty tough to handle - no matter the "odds"... numbers... percentages... etc. A lot depends on the individual patient, I believe. (Me - I asked upfront. Wanted/used the numbers to make all my key decisions.)

    And regarding "No Evidence of Disease" - means currently available medical technology does not detect cancer. Of course, a test to detect a single cancer cell does not exist (well, not yet - maybe some day). So, NED is the best we can get. And each patient's doctor may use different and various methods/tests to determine NED. Here on the board - we read of scans, blood markers, etc., in addition to standard mammograms (and/or breast ultrasounds, etc.). Again, it all really depends on the individual patient and her own doctor's decisions/recommendations. Main point: please don't compare your own situation to what you read here (nor elsewhere).

    Not too long ago, I asked my own med onc why I haven't had this/that test/scan, yadda yadda yadda... His response, in sum, was that he saw/found no "reason" (i.e., symptoms) for them. After he left the exam room, his nurse (love her!) then explained that I shouldn't worry about tests NOT being ordered. The time to worry would be if they were.

    Yes, knowledge is power. But, there's an awful lot of info that certainly does not apply to each and every one of us. I hope you trust and have confidence in your own doctor. He/she is the very best source for the info you seek, for sure.

    Merry Christmas to you & yours, Cee Cee! With very best wishes for good health, including NED status!

    Kind regards, Susan
  • Cindy Bear
    Cindy Bear Member Posts: 569
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    carkris said:

    I dont talk to my oncologist
    I dont talk to my oncologist about these things as he is kind of a doom and gloom kind of guy. hasnt always been a great match for me. I rely on him to do what I need. he is very available to me, but no cheerleader. If this info is important to you ask, they will tell you.

    Prognosis
    I agree that knowledge is power. I also know when you or someone close to you receives a cancer diagnosis, it feels like you've been sledgehammered. It's been my experience, most oncologist don't volunteer this information. It's also true that no two people are alike, there's lots of different types of cancer and no two people respond exactly the same. Nobody knows how many days any of us has left. Having said that, I would want to know my prognosis and especially the stats concerning treatment.. i.e. no treatment , verses minimal or moderate vs. very aggressive treatment. I think that's very important. Patients are consumers. We need to be active and learn all about the medical products and services offered, to make an informed decision.
  • 24242
    24242 Member Posts: 1,398
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    Survival Rates
    Well I would have thought we all have been given the chances of survival but like all stats what do they truly mean when people are always proving them wrong.
    Todays world with emotional well being playing a huge roll in longevity. Having good support systems increases our survival rates as do various other things.
    And remember the survival rates for cancer have been on the rise and that is a very good thing...
    Tara
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    No, but my Radiologist did...
    My oncologist said that, "I am a person not a statistic". She sees me as a long term survivor. Most published statistics are old, and don't always reflect current treatments. Also, there are are so many factors.

    On the other hand. My radiologist said, "you have X number of years to live". It really pissed me off, so I intend to prove him wrong.

    On my refrigerator I have a magnet, with Harrison Ford as Hans Solo. It says, "NEVER TELL ME THE ODDS!!.

    Never Tell Me the Odds
    Love that quotation. And it makes me smile to remember Star Wars and Hans Solo.

    Thank you, ShirleyCurls!
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    carkris said:

    I read a surgeon report once
    I read a surgeon report once :"She is highly anxious and sees a therapist" Duh!!!!!!!!!!!!

    "Highly Anxious"--Grrrr
    Hi, Penny, your post made me laugh. My local oncologist wrote the same about me. Following the appt during which he told me the cancer I had is "highly aggressive," he wrote: "Patient seems very anxious." !!!