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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 6, 2017 01:42PM

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 6, 2017 07:36PM 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 7, 2017 04:02PM 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 05:39AM - edited Sep 8, 2017 05:45AM 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.

Ebr

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 9, 2017 03:23PM 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 10:24AM 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 18, 2017 04:57PM 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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Sep 20, 2017 04:07PM QueenElizabethTheFaux wrote:

ALL of my Drs....from various GP's, to ER Drs, Specialists & all of the Drs on my "Accredited Breast Cancer Team" (except a Radiation Oncologist,) ...have been a disgrace to their professions.

Every one of my 4 surgeries & long list of other various procedures has been screwed up (to varying degrees.) I'm getting ready to "dump" every one of them & go to a much better facility. It's a longer drive, however it's at a well-respected "Teaching Hospital."

Looking forward to getting a better Pain treatment plan (since I am, & have been, in excruciating Pain for many, many years...thanks to continued misdiagnosis' of the source of my pain. One that a PET Scan could have easily cleared up, had I been given one after they were available to the patients beginning appx. F17 years ago. (I repeatedly asked for one but was supposedly always denied...evenafter the Breast Cancer diagnosis, 2 years ago.)

Also, I was just told I'm Terminal, may have up to 1 year left & have likely had the bone mets for at least 22 yrs.) Can't wait to obtaining honest Drs. (My old Chemo Dr just informed me, & my mother, that he lied to me last year. He deliberately Over-Medicated me w/Taxotere...w/o my knowledge or consent...& I almost died. His actions are considered to be Felony, in my State. It's also "Medical Malpractice" in Civil Cases.

My death will not be in vain. I'm working on my own Wrongful Death & Medical Malpractice lawsuits...w/my own evidence collection against each party involved. . My family has promised me they'll pursue charges...& extensive amounts of financial compensation....against every single Doctor & RN (yes, there were some) who have collectively destroyed my life. I'd like for my case to be SO massive that it changes the way cancer patients are treated...in that Facility & (hopefully) on a global scale too.

Btw...These actions are not new to us. My family has been thru this before, regarding my Dad's Wrongful Death Lawsuit (via a botched Angioplasty & the incompetent Doctor who killed him.) The problems was that we did not pursue the case further...by slapping Leins on the Drs. homes & freezing all of his financial assets. We also did not call for a State Investigation into the matter. (Live & learn.)


"Courage is being scared to death... and saddling up anyway." John Wayne Dx 9/17/2015, IDC, Right, 2cm, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 12/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Dx 12/22/2015, DCIS, Right, <1cm, Stage 0, 7/8 nodes, HER2- Dx 12/22/2015, ILC, Right, 6cm+, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 1/5/2016 Mastectomy: Left, Right Chemotherapy 2/9/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 6/28/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 9/12/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 5/23/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 7/27/2017, DCIS/ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 2, 7/8 nodes, ER+/PR+, HER2- Radiation Therapy 8/7/2017 External: Bone Hormonal Therapy Femara (letrozole)
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Sep 20, 2017 04:21PM Moderators wrote:

Wow, so many powerful and intense stories. We appreciate your frankness here.

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Sep 21, 2017 10:23AM MARIONSGIRL wrote:

I am very happy with my Medical and Radiation Oncologists. I was assigned to my Medical Oncologist by my PCP two years ago. I have been with my PCP for about 20 years and she is awesome! I was assigned to a different Radiation Oncologist who I liked a lot after just one visit but due to location I asked to change to someone else. I'm happy with my decision too. My Medical Oncologist was located at a satellite location and he and his staff are awesome..Almost a year ago, he was transferred to the main campus and I don't know the staff and don't feel a connection to them. It was not his idea to move. When he was in the old location, communication wasn't a problem. Since he moved, he said I could email him or call and ask to speak to him and not a nurse. We had a great rapport. Just recently he said I had to stop the emails due to policy and privacy rules. The main location is a very serious place and very different from the satellite location. I'm FB friends with the staff at the old place, not with my Doctors as I know and was told that is not appropriate. I have sent questions through the patient portal and always get a phone call from the nurse. My MO told me he has 3,000 patients so I understand how busy he is. Plus he has 3 young children and a wife that he needs to make time for. So cancer affects everyone. I expect I will be seeing my MO for ten years. I was recently released from my breast surgeon and she is a sweetheart! Told me to call her by her first name and gives hugs!! I see my RO next month and expect to be released from him too.

Dx 7/2015, LCIS/DCIS/IDC, Left, Stage IIB, 1/3 nodes, ER+ Surgery 8/17/2015 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/20/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/16/2016 Hormonal Therapy 6/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 7, 2017 04:32PM amarantha wrote:

I am in France, very grateful to be taken care of my the generous health system, and I owe my life to France, however between me and the oncologist the current just doesn't pass. She's young, stilted, uncommunicative, seems always disapproving, we almost always get into some stupid fight. I don't think I can just ask to see a different doctor, it doesn't work like that.

current treatment for metatasic breast cancer - Ibrance and Faslodex Dx 11/11/2013, IBC, Left, 6cm+, Grade 3, 4/7 nodes, ER+/PR-, HER2- Chemotherapy 12/12/2013 CEF Chemotherapy 2/19/2014 Taxotere (docetaxel) Chemotherapy 3/17/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 3/24/2014 3DCRT: Breast, Lymph nodes Surgery 5/20/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/5/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/12/2016, IDC/IBC, Both breasts, Stage IV, metastasized to other, 7/4 nodes, ER+/PR+, HER2- Hormonal Therapy 12/12/2016 Aromasin (exemestane) Targeted Therapy 12/12/2016 Afinitor (everolimus) Targeted Therapy 10/29/2017 Ibrance (palbociclib) Hormonal Therapy 10/30/2017 Faslodex (fulvestrant)
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Nov 7, 2017 09:22PM Sadiesservant wrote:

I feel very fortunate as I have a great relationship with my MO. He’s an absolute prince who gave me his email address as he felt I was too busy to have to go through the regular channels to reach him. He has even responded to my questions while at conferences and while on vacation!

Having said that, there are times when it is a bit challenging as a patient. I have come away from our appointments feeling a bit uncertain. I think the problem is that he knows where he wants to go with things but I might be a couple of steps behind in terms of processing. But he will always take the time to answer any questions I have.

The one subject that I feel I cannot discuss openly is prognosis. He shuts down when I go there directly. I know there are no crystal balls and medical professionals don’t want to look foolish if their predictions are off base but at the same time I feel a need to be able to plan to some extent, particularly when it comes to work. I’m still working full time which is beneficial but I also want to have time to enjoy the time I have left. It’s a constant struggle for me. But I may be expecting too much in the world of uncertainty that my world has become. For now, I have just become more devious in how I ask.

😉


Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine)
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Nov 8, 2017 06:23AM Leapfrog wrote:

I'm very happy with the MO I have now but firstly I have to mention the MO I started out with. The first mistake was that her husband was my breast surgeon. I was in a blur of pain and bewilderment after the operation and was prepared to follow his advice regarding an oncologist. At my post-op appointment he said, "I'll book you in with Prof ........ (I won't mention the name) and she'll look after you from now on". Soon after that we discovered that the oncologist is his wife. He didn't declare an interest in referring me to her....bad ethics at the very least. She's highly thought of in my city so I went with it though. However, I found her approach to be very aggressive and confronting but I thought that if she was good I'd cope with her bedside manner. What I didn't like was that, although I have extensive bone mets just everywhere, she brushed aside my pain and actually gave me paracetamol for it! Obviously I might as well have been drinking the water minus the tabs for all the good they did. She didn't mention Ibrance to us, although I'm highly ER+PR+HER2- and told me she would put me on Letrozole for life and said I should live for a few years on that and, if that stopped working she would try something else. Fortunately my husband is a gynaecologist and had read in an American medical journal about Ibrance. It wasn't yet available in Australia except under trial conditions so he asked her about it. Her answer was that I wouldn't be suitable for the trial that was being held at ***** Hospital and when we wanted to ask questions about it she became annoyed and brushed the questions aside. We weren't happy with that that, obviously and we also weren't happy that I hadn't been assigned a breast breast care nurse, something that all Australian breast cancer patients should be registered for. My husband took it upon himself to call Pfizer and ask to speak to someone who could advise him on any trials being held in Perth. The manager of a trial being held in Australia and SE Asia immediately called him back and said that yes, there was a trial being held in Perth but it wasn't the hospital the MO had mentioned. As one of Perth's top oncologists she would definitely been aware of that trial. But that wasn't our last shock! At my next appointment she told us that she was going to the US the following week and could buy Ibrance for us for $10,000 for one cycle of the drug, that she would give me Ibrance for 3 months and then do a bone scan to see if it was making any difference. Meanwhile I would stay on Letrozole, having regular bone scans and, WHEN they showed progression, she would give me Ibrance for another 3 months. I'm sure that everyone here who is on Ibrance knows that is not how it's used and we were very skeptical to say the least. Firstly there was her husband referring to his wife without a declaration of interest and now it was clear that his wife had steered me away from a trial on which I could receive the drug for free, not knowing how to use it and offering to buy it for us at what was very obviously, after we did some research, was at a marked up price!!

My husband called the manager at Pfizer back and asked who to contact regarding the trial and by that evening I was told by the consultant oncologist running the trial that I'd been accepted! Since then I've been completely happy with my treatment in every way. Questions are listened to and answered, I'm taken seriously and he explains every step to me. Recently I started having pain spikes so I went to see him to discuss that and his advice has addressed the problem as well as I can expect considering the load of cancer in my spine and ribs and the fact that I don't handle analgesic medicine well.

I never talk to him about prognosis. He tells me I'm doing well and he's happy with me and that's enough for me. I don't ever think of myself coming to the end of my life. I live for now and don't think about the future.

What I am extremely glad about is that my husband read that medical journal and knew about Ibrance before we saw the first MO!!

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)

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