I know this sounds dumb

kateinkalifornia
kateinkalifornia Member Posts: 2
in Breast Cancer #1

but who should my 'go to' doctor be?  My surgeon and my oncologist work  together closely, but seem to keep my primary out of the loop.  I don't really care for my oncologist, I've only had a couple of appointments with him.  We just didn't seem to connect.  I love my primary, but it's like pulling teeth to get any test results to her. I have questions and only see the oncologist every 3 months.  My cancer was Stage 1, so small that half of it was taken in the biopsy. After my lumpectomy, the pathology report showed so many precancerous cells that we decided to remove the whole breast. I didn't need chemo or radiation.  I'm taking Anastraozole for the next 5 years.

Comments

  • coco2008
    coco2008 Member Posts: 418
    #2
    My personal opinion would be

    My personal opinion would be to get another oncologist.  My thought is that any doctor that you cannot communicate comfortably with is not worth their weight in saw dust.  This is your life and the doctor needs to listen and help you. 

    God be with you,

    Sandy

  • camul
    camul Member Posts: 2,537
    #3
    I see my onco
    for everything cancer-related and only saw my primary for normal things like sore throat etc.If you dont connect with your onco can you get a second opinion for a different one? I am asking not knowing if you have insurance that only allows you to see certain ones.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
    I have all my test results

    I have all my test results sent to my gyno...i do not have a primary but love my gyno-he keeps up on all my paper work etc. over seeing things...I still see the medical oncologist and the radiologist and now my new surgeon regualarly.

    Have you thought about changing if you just dont' click with the Dr?

    Denise

  • sbmly53
    sbmly53 Member Posts: 1,522
    #5
    I was told it's my PCP
    Getting results sent to my PCP, Onc, Gyno, was like pulling teeth. I needed a case manager.
    I ended up requesting that my records be forwarded and also that I get a copy. Then I made copies and brought them to all my appts.
    Time consuming and seemingly unnecessary, but the results never got where they were supposed to be without doing this.

    Sue
  • helen e
    helen e Member Posts: 223
    #6
    sbmly53 said:

    I was told it's my PCP
    Getting results sent to my PCP, Onc, Gyno, was like pulling teeth. I needed a case manager.
    I ended up requesting that my records be forwarded and also that I get a copy. Then I made copies and brought them to all my appts.
    Time consuming and seemingly unnecessary, but the results never got where they were supposed to be without doing this.

    Sue

    GP

    I am one of the lucky ones, I have a great Onco and a stellar GP. My GP saw my name come up to be discussed by the tumor board and went to the meeting. When I called her she explained everything in English to me! The hospital where I go for tests always asks if there's anyone else besides the doctor who ordered the tests that the results should go to and they always get the results. Again, i am one of the lucky ones.

    If I were you I would get an Oncologist that I can connect with. That is of the utmost concern. This isn't a cold we are talking about here, it's your life! You can't afford to be uncomfortable with them. I understand if there is an insurance issue here and this is your only choice. If this is the case maybe you can sit down with them and discuss your concerns. I hope you are able to work this out. I'm pulling for you.

    Hugs, Helen

  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #7
    camul said:

    I see my onco
    for everything cancer-related and only saw my primary for normal things like sore throat etc.If you dont connect with your onco can you get a second opinion for a different one? I am asking not knowing if you have insurance that only allows you to see certain ones.

    Can you get a new

    Can you get a new oncologist?  They should be your main one besides your GP.  I also see my radiation oncologist.

    Oh, and NO question is dumb!

    Sue :)

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
    helen e said:

    GP

    I am one of the lucky ones, I have a great Onco and a stellar GP. My GP saw my name come up to be discussed by the tumor board and went to the meeting. When I called her she explained everything in English to me! The hospital where I go for tests always asks if there's anyone else besides the doctor who ordered the tests that the results should go to and they always get the results. Again, i am one of the lucky ones.

    If I were you I would get an Oncologist that I can connect with. That is of the utmost concern. This isn't a cold we are talking about here, it's your life! You can't afford to be uncomfortable with them. I understand if there is an insurance issue here and this is your only choice. If this is the case maybe you can sit down with them and discuss your concerns. I hope you are able to work this out. I'm pulling for you.

    Hugs, Helen

    I think this is not uncommon - unfortunately

    Just yesterday, I had a conversation with a friend who is having significant health issues and seeing a number of specialists who do not appear to talk to each other.  We both get our care at a large medical group that has electronic medical records.  We thought this meant the right hand knows what the left is donig because they all have access to the same information.  Not always so.  She is having a heart to heart today with her primary care physician because she is really upset about all of this.  She feels her PCP needs to insure that communications are happening and she needs to know that someone is overseeing her total health care.     Stuff may be well documented electronically now, but someone has to look at it.  Now it seems that you have to do everything yourself.   I do know whenever I see either the onc or my primary care physician, that they have reviewed information because they will often comment that "I see Dr. so and so thinks . .  "  but I don't think anyone looks until 5 seconds before they see me and sometimes not until they walk into the room and pull up your records. 

    It sounds like you're uncomfortable with the lack of communication beween your pcp and onc and most of your issues surround your oncologist.  Maybe you could discuss with your pcp how this can be improved, including referral to another oncologist.  Happens all the time (changing docs).  No one gets upset about it except the patient.

    I have copies of all my pathology reports, lab reports, etc. when I had cancer.  Do you have this?  You can ask for them when you next visit your oncologist.  They are yours.  I also receive electronically the results of all tests now.    Having this information provides a background for conversations with your healthcare team AND (for me) is a go-to for things I forget.  So much better than just being patted on the head and told everything looks good. 

     

  • candican
    candican Member Posts: 24
    #9
    Hang in There!

    My physcian do  not communicate with my Oncologist but they will always send information concerning my cancer to him. I to was diagnosised with stage 1 breast cancer and I was told that I didn't need radiation but now that my cancer is back I feel that if I had gotten it, my cancer wouldn't have returned so soon. I only had 4 sessions of Chemo and then a year of Herceptin.  I truly think it would have benefited me more.

    You may want to get a second opinion. I wish  I had gotten one.

     

  • Noel
    Noel Member Posts: 3,095 Member
    #10
    helen e said:

    GP

    I am one of the lucky ones, I have a great Onco and a stellar GP. My GP saw my name come up to be discussed by the tumor board and went to the meeting. When I called her she explained everything in English to me! The hospital where I go for tests always asks if there's anyone else besides the doctor who ordered the tests that the results should go to and they always get the results. Again, i am one of the lucky ones.

    If I were you I would get an Oncologist that I can connect with. That is of the utmost concern. This isn't a cold we are talking about here, it's your life! You can't afford to be uncomfortable with them. I understand if there is an insurance issue here and this is your only choice. If this is the case maybe you can sit down with them and discuss your concerns. I hope you are able to work this out. I'm pulling for you.

    Hugs, Helen

    I still see my onco, my rads

    I still see my onco, my rads onco and my primary.  It just depends on what I need, but, I still see all of them and they keep the others in the loop.

  • Kylez
    Kylez Member Posts: 3,761 Member
    #11
    disneyfan2008 said:

    I have all my test results

    I have all my test results sent to my gyno...i do not have a primary but love my gyno-he keeps up on all my paper work etc. over seeing things...I still see the medical oncologist and the radiologist and now my new surgeon regualarly.

    Have you thought about changing if you just dont' click with the Dr?

    Denise

    My onco and rads oncologist

    My onco and rads oncologist say that I am theirs for life!  lol  I see my gyno every year for a pap test and exam.  There is a network in place where all of my doctors can log in to a site and get what info they need.

    I see my PCP only when I am sick, like with anything other than cancer related. 

  • Candi Cane
    Candi Cane Member Posts: 159
    #12
    sbmly53 said:

    I was told it's my PCP
    Getting results sent to my PCP, Onc, Gyno, was like pulling teeth. I needed a case manager.
    I ended up requesting that my records be forwarded and also that I get a copy. Then I made copies and brought them to all my appts.
    Time consuming and seemingly unnecessary, but the results never got where they were supposed to be without doing this.

    Sue

    You should seek a new

    You should seek a new oncologist as you really need to trust and have faith in them.  You should also feel comfortable when you see them or call them.  Is that a possibility for you?

    Good luck,

    Candi

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