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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Would like your feedback: Patient - Doctor Relationships

Topic: Would like your feedback: Patient - Doctor Relationships

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Sep 7, 2017 01:42AM

Moderators wrote:

Dear Members,

We are preparing some new content about patient-doctor relationships for those who are living with metastatic breast cancer.

We would love to hear from you! We welcome your feedback on the following questions:

  • What communication challenges do you experience in the doctor's office, if any? Do you always feel like your concerns are being heard?
  • Are there any issues you wish your doctor would address but has not?
  • Are there issues you are afraid to bring up with your doctor?

Thank you for sharing your experiences!

The Mods

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Sep 7, 2017 07:36AM dlb823 wrote:

I would say if anyone answers "Yes" to any of the above questions, they need to find a new doctor. We are stressed enough dealing with our bc or mbc, and there is no reason in the world why a doctor's office should be adding communication challenges or other stresses to our lives. We all deserve docs we trust and with whom we can speak openly about our concerns, including questioning treatment recommendations. Unless you live in the boonies with extremely limited options, I can't imagine having any of the above issues and not looking for an onc who is more approachable/relatable and/or an office staff that is detail minded and efficient, which includes a way to reach them when necessary, and a timely response time. Settling for anything less is crazy when our lives and comfort depends on them.

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 8, 2017 04:02AM Bigbhome wrote:

My original mo, had a great bedside manner, however, I started feeling like things were being missed, plus I wanted to be closer to home. My new Mo, (2yrs, 4mos) , has been a godsend! He is very detail oriented and extremely up to date with the latest and greatest of treatments. He also does research. He seems to have a passion for finding a cure. Not just for bc, but for mbc also. His staff are great! I have an issue with one, but have found away around her so I can't complain. His PN is retiring for health reasons. I hope she will be well, but I feel like I am losing a good friend. I talk to her about things I am uncomfortable talking to Mo about. Constipation issues, sexual issues, things like that. I know I can discuss these things with Mo, but it is nice to talk to a female about female issues. Oh well...my Mo is always 2 steps ahead with treatment ideas. He has several lined up, depending on where it progresses to.

As much as I loved former Mo, we were together 11 years, I could not imagine going back to her or anyone like her! I want, and need that expertise!

Dx 5/2012, IBC, Left, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Radiation Therapy 4/16/2017 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Sep 8, 2017 05:39PM - edited Sep 8, 2017 05:45PM by stagefree

As much as the main job of the doctor is to keep us alive,

. Oncology is the most challanging field in medicine, offering no cure yet

. Doctors know you will die from day 1, not be cured

. The therapy options are basic, worldwide, one following the other till the patient dies

. Doctors push for a distance, a challange for any human, otherwise cannot live doing this profession

. It is the PATIENT's job to be her self advocate at critic times, as the doctor is not her family, just doing her/his job. The doctor has a life of their own and hundreds of other patients to think about professionally.

. Doctors hate dr google

. Do what your doctor says or stop going there


All that being said, I have a MO, who made a lethal mistake right at the start. Normal, she is only human. She is top notch MO in my country, we can talk everything openly, decide on things together and the treatment has been as successful as it can ever be .. all this achieved after I found out and accepted the bullet points I stated above.


Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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Sep 10, 2017 03:23AM Waitingforspring wrote:

hi I've had my mo and my rad onc for 5years now and the are wonderful. All my concerns are met and I can call at any time. My docs are all in the city I live in and don't have to travel to another location. If by any chance I need extra help they can consult with Boston without me going there. I have a wonderful with my primary care physician. She is there for me at any time. I have been very fortunate in that area

Cheryl Chemotherapy Xeloda (capecitabine)
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Sep 18, 2017 10:24PM Laurie09 wrote:

I have the most wonderful MO. She is caring, compassionate, always interested in my questions and very available to me and communicative. On top of that she's super smart and on top of the newest treatment options available.

I never feel like my concerns aren't heard or aren't being met.

Laurie Dx 2/20/2009, IDC, 3cm, Stage IIIA, Grade 2, 7/12 nodes, ER+/PR-, HER2- Chemotherapy 3/12/2009 AC + T (Taxol) Surgery 8/28/2009 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Tissue expander placement Radiation Therapy 10/5/2009 Hormonal Therapy 11/5/2009 Dx 5/2015, IDC, Stage IV
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Sep 19, 2017 04:57AM pajim wrote:

My oncologist and I have been together for almost 10 years now. I didn't choose him, he was chosen for me, but the person who chose him did so for some very good reasons. Not to mention they knew how to match us up.

One's relationship with one's onc is a personal one. If you need touchy-feely, they should provide it. If you're a 'just-the-facts ma'am' person they should be able to do that too. Our relationship has evolved into a lets-ignore-the-cancer-if-we-can. Because of the way I act I sometimes feel that he takes me for granted. That I'm always going to be the easy part of his day. Some things (mostly awkward symptoms) I'm much more comfortable bringing up with the NP or the nurse. If I don't want it to be that way, it's my job to change it.

That said, I love and trust my onc. I have his cell phone number, his e-mail address, and his trust. When I feel there's a problem he believes me and works to get to the bottom of it. When the chips are down, he's there. He has the science at his fingertips and is willing to discuss all sorts of treatment ideas. He also says "if you get into trouble, stop taking the meds and then call me". And he doesn't mean call the office.

Your specific question about the doctors' offices. It depends on what kind of office you go to. I go to a large cancer center. They have systems of care. The best thing a patient can do for herself is to learn what those systems are and how they work. Then you'll know how to align your expectations. You'll also be able to figure out how to cut through the systems/red tape. [As a for instance, I finally figured out that they can't order your Lupron shot until you check in for the shot appointment. Not the onc appointment. So now I know why I'm sitting in the waiting room for 30 minutes and can be patient about it.]

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Targeted Therapy 2/26/2017 Afinitor (everolimus) Hormonal Therapy 2/26/2017 Aromasin (exemestane) Chemotherapy 6/18/2017 Xeloda (capecitabine)

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