Communication with Medical Team

vbishop
vbishop Member Posts: 616

Years ago, I was diagnosed with thyroid cancer.  Although my cancer was very treatable (papillary carcinoma), I felt very alone.  My doctors did not communicate with each other at all.  It was a nightmare.  Anyone having a similar experience with communication between your breast cancer doctors?  I am curious if my thyroid experience is still alive and well in the medical community.

I am starting a breast cancer support group at work and I am curious as to what is typical. Should communication between doctors be something I advise women to ask about when selecting her medical team?

Thanks in advance for your responses....

Comments

  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    It's still a problem. At least it was for me. At one point I was sure I could disappear & no one would know the difference. I believe the nurse navigator is suppose to help with this. Mine didn't

  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Thanks for responding.  It is hard enough dealing with the roller coaster that is breast cancer.  Having to make sure your doctors are communicating with each other adds another level of "fun" to the mix.

    I am so sorry that you felt alone during this process and that the nurse navigator has been less than helpful.  We have a breast cancer resource center that assigns patient navigators to newly diagnosed patients.  But they weren't very helpful to me or to my girlfriend recently diagnosed. 

    I am fortunate that I have an amazing medical team that talk to each other on a regular basis via email and phone calls.  I found a lump under my arm that turned out to be fluid encapsulated by scar tissue where my lymph node biopsy was done.  I asked my plastic surgeon if he thought it was anything to worry about and he advised me to visit with my surgeon.  When I called my surgeon to schedule the appointment, they already knew about the lump.  So did my oncologist.   This is typical of my team.

    I honestly thought that my current experience was the new norm and that doctors were finally getting it right in communicating with each other.  But in reading other blogs and speaking with other survivors, I may be wrong.

  • Momine
    Momine Member Posts: 7,859
    edited February 2014

    I have had problems with this. It also bugs me that neither my onc nor my surgeon has a nurse navigator type person to follow up, coordinate care etc.

  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Momine -

    I am so sorry you've had communication issues.  I wish I could clone my team and send them to every breast cancer patient!!

    I learned years ago (with the thyroid cancer and no communication) that we have to be aggressive about our health care.  How do we get the word out to the medical community that the communication with the patient and with each other is key?  And assistance in coordinating with the doctors, hospitals, imaging centers, etc is huge in taking a lot of the worry and stress from the patient.  After all, studies show that reducing stress is one way women can reduce the risk of recurrence.  What is more stressful than having to do all the coordination and communication yourself?

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited February 2014

    Just the fact that years have gone by has probably pretty much cured that issue.  Today, docs regularly email their case notes, test results, and all.  That said, it does not mean nobody in your group has a similar issue.  Probably your best approach is to have a semi-secret just-in-case list of subjects, but invite the group to raise the questions and concerns that are foremost in their minds. 

  • camillegal
    camillegal Member Posts: 16,882
    edited February 2014

    vbishop I just saw this and thought I'd pop in--I had to change teams after rads because I moved, but I have to say all my teams that I've had are all together about everything. Now with putting everything in the computer the next Dr. can read about all that has been done and all the results. Unfortunately I have more Drs. now then when I started but they not just talk to each other but email each other as do the nurses so even in these few yrs it has been very good, I wish all teams were like mine it makes it so much easier on us, cuz I forget so much and with each visit I get a print out of everything we talked about and all my meds each time--and I like that. Good Luck

  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Camillegal -

    Thanks for your reply.  I have a wonderful team that communicate with each other about everything via email, phone, even conference calls between the group.  And the nurses have been amazing.  I am blessed to have these men and women taking care of me.  I am happy that you have a similar experience.  Unfortunately, I am hearing that not everyone is as lucky as we are.

    Best of luck to you going forward.  I can't image what it is like to change your team.  I would hate to do that at this stage of my treatment (mainly because it is still fairly early in the process).

  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Thank you for the suggestions Brookside. 

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