Things you wish your doctor knew

Options
eloqui
eloqui Member Posts: 65
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Hi all,

I am working on a paper with my experience with breast cancer that will be shared with residents (physicians-in-training).

I thought it would be helpful to get some input on this board with people's experiences with physicians.

Is there anything you would like your doctor to understand? Any things physicians have done that have been particularly helpful or unhelpful?

Thanks.

· Share on FacebookShare on Twitter

Comments

  • srdc2013
    srdc2013 Member Posts: 25
    edited June 2014

    I have a ton of thoughts on this but am still riddled with chemo brain so hopefully I can make some sense.  

    Getting the diagnosis was such a shock for me and they threw around all these words and acronyms that had no meaning to me.  I wish the doctor had seen me again before starting chemo just to go over questions and really just to go over everything again.  I went from diagnosis to port placement to chemo in about 10 days time. It was way too fast.  There are decisions I could have made that I just didn't have the ability to process at the time.  

    Good things:  my doctor was available 24/7 via email/text.  I had some pretty nasty side effects and having her available to help me manage those on the weekends and after business hours was priceless.  I hated to interfere with her family time and only used it sparingly but it was so much easier than going thru a service.  I had very unusual side effect (hearing loss) and she was open to consulting with other doctors and even reached out to some on her own - setting her own ego aside.  She never rushed me during visits and was always open to questions, comments and concerns.  She worked with me on scheduling treatment so I could fit in a trip we had planned.  

    Unhelpful things for me were mostly things out of most doctor's control.  IE - the ridiculous bureaucracy you have to wade through to get copies of scans, records for second opinions, calling and staying on hold for 30 minutes to get an RX refilled.  Long waits for infusions and labs.  Surly nurses. But again, those were under the control of the facility I chose, not the doctor.   

    · Share on FacebookShare on Twitter
  • Lucky777
    Lucky777 Member Posts: 25
    edited June 2014

    I really like my PS for the most part. But one thing that bugs me, is I tried to discuss Alloderm with him, three times

    . He would go on a rant about how expensive it was. I was trying to get information. He made me feel as if I wasn't worth spending the money on. The third time I  challenged him and he finally explained that he has seen too many problems with the product. Why not just say that in the first place. 

    My MO is OK. He comes highly recommended. I just don't have a lot of confidence in him. I think because my cancer was found early, he thinks I shouldn't have any thing to worry about. I think I have more to worry about. My Pathology report actually says "assuming that the cancer hasn't already metastasized" That is a heck of an assumption.  He also thinls I dont need any tests for follow up.so we have not looked for mets and wont look unless I have symptoms. At which time it will be too late. I also have the lobular kind that often doeznt show up on scans and imaging so even if I would have a scan, I probably wouldn't believe it anyway. 

    · Share on FacebookShare on Twitter
  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited June 2014

    What I loved most about all my doctors was that they immediately picked up on my need to learn and understand everything I could about bc and the treatment I was undergoing. I am a science type person to begin with and was completely fascinated with the genetic side of my diagnosis. I have since shared so much of what I've experienced with people who never had the need. 

    The one thing that has been tough is the plastic surgeon. His department is the only one where I find I often wait a half hour to 40 minutes passed my appointment time. It makes it difficult to schedule other appointments on the same day in different parts of the building.

    · Share on FacebookShare on Twitter

Categories