Would like your feedback: Patient - Doctor Relationships

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!

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

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.]

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.

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!!

Dear Mary(NP)

Bless your heart. You’ve been thru he**. Now, I don’t know enough about your LTD policy to offer advice, but I’d like for you to know how to win your SS Disability Case, for which I’m certain you will qualify. This is how it’s done:

1.) You must stop working full-time completely. (If you’re not financially ready, begin saving $$ now.)

2.) The day you stop full-time employment, print out the SSDI forms from the US Government’s website & complete them. (Be sure to note that your Doctors are not cooperating in providing you with Pain Rx relief.)

Mary, I’m a medically retired Police Officer/Detective so I know how to direct you in this situation. No pain Rx relief for a dying cancer patient is a considered to be a crime in my State (Ks) & the Statute # can be found online. If it’s a crime in your state too, contact the Govenor’s Office for directions on how to begin filing Criminal Charges against your doctor(s) & that RN...who is also complicit in hindering your medical case.

3.) Get copies of ALL of your medical records related to this case. (Including the ones from Atlanta.) Make a copy of each one, to attach it to your SSDI paperwork.

4.) Find a proper breast cancer Dr, or Pain Mgmt. Dr...even if you must drive all over your state...& get examined. (Show him or her all of your medical records, too.) Have that Dr write a letter, or note, to the SSDI Judge explaining that he believes you are no longer able to work full time...or at all, if necessary. Keep the Original & attach a copy to your SSDI papers.

5.) Mail everything to their address & make sure you have the Post Office get a signed receipt of the delivery.

6.) For SSDI cases “won” the recipient won’t be paid for the 1st 6 months of non-employment. But you will be paid monthly afterwards.

7.) SSDI employees may need to meet w/you &/or have you examined by their Drs. Do meet w/them. Be on time for your appts.

8.) Finally, DO file criminal charges against your Drs (& RN.) Request the State to go to the Drs Office & examine their treatment of all pain patients. Make a formal request to have the Drs & RN’s licenses revoked. Hire an attorney to sue all medical personnel involved in your shabby treatment. Slap Liens on their homes, cars & investment properties. Freeze all of their bank assets & any Retirement Account assets, while your at it. (Your attorney can do most of this work for you.)

9.) Finally, when you’ve Won, know that you’ve just helped thousands of women & men in cancer pain...& other pain...who suffer silently. Be proud of your contribution to their lives...& yours.

Much love,

QueenElizabethTheFaux

PS. Sorry for any misspelling or incorrect grammar. I wrote it all fairly quickly : )

jo6359 is correct...most Metastatic Breast Cancer Patients do not die from breast cancer. (For example, in my case...w/very widespread bone mets only...1/3 of us die from pneumonia. Also, my Radiation Oncologist believes I’ve had it somewhere between 17 to 22 years, based on the huge extent of the bone mets. Currently, I’ve just begun losing the use of my right leg & left arm. My Radiation Oncologist already saved my vision & also stopped the cancer cells from eating larger hole in the clivus (sp) plate in my skull. He may be able to fix my 2 limbs. Fingers crossed!) Many Metastatic Patients go on to live very long lives, thanks to the hard working scientists making SO many better drugs to treat it & better radiation techniques!

i like your optimism all. Very encouraging.

V

I would like to respond further to the origi al questikns posted by the moderators:

For 3.5 years, I have received treatment at one of the NCCN facilities. I really like my MO and his team who I originally started with for bilat stage III BC (started there Oct 2014). All his team members have changed out and I do not have the same connection with him or his team.

I communicated this concern once verbally and got zero response. They did not hear me. Communication further degraded and i finally wrote an email. I carefully described 3 huge examples of communication breakdown and wrote out my bottom line: I DO NOT FEEL SUPPORTED BY MY ONCOLOGY TEAM.

Of course, i received a phone call the next day. Unfortunately his "nurse coodinator" started out being defensive. I did not feed into that. I listened to her explanation(s) then responded and encouraged our focus to be on better communication. She agreed and pledged their support. My next appt is next wk so looking to see if things will improve.

The specific communication issues were:

1. MO reluctantly agreed to refer me for a biopsy but insurance co called and told me the MO office told them i would have to get the referral from my PCM because it had nithing to do with oncology.

2. I agreed to be in a stage IV study. I met with a new person, Research Coordinator, the same appt as being told i was stage IV. While it was too much to take in all at the same time...i agreed tk be in the study.

I spoke with same Research Coordinator twice on the phone then met with him again at next MO appt. MO stated he was not a part of that study so i would be transferred to one of his colleagues, patted me on the sboulder then walked out of the room.

I had already met this "colleague" and knew never wanted to talk to her again, let alone have ber actually overseeing my care. I made it abundantly clear to his "nurse coordinator" i never wanted to see this colleague again and was told i would never have to see them again.

And yet at this appt, they briefly told me i was going to be transferred to her for the duration of the study.

I became very frustrated and extremely disappointed in them and declined being in the study. I felt thoroughly abamdoned vy my MO and his team. I was hurt and i was livid.

There are other examples of communication breakdown but you can understand the vist of my experience with my higly respected MO at this higly respected, world-class facility.

My long email outlined my perception of not being supported with these two examples and a third one to justify why i felt the way i did. I also asked some clinical questions i need answers to. I hope to receive these answers at our next visit next wk.

I felt compelled to write the long email in advance of my next appt because:

1. I needed them to know what i need from them.

2. 15 minute followup appts are not long enough to go over all my issues. If i prepare them with info before the next appt, i should be more successful in getting what i need from them during that 15 min appt.

3. I, and all patients, need to stand up for myself. I, and all patients, need to be my own best advocate. No one else will stand up for me as well i will stand up for myself.

I hope this input is helpful in giving the moderators material to work with.

I have another big issue to being up but will do it in amother post.

Warmly,

V

V - I agree with you that whilst it would be nice if the oncology teams knew what we needed, it's also our job to tell them what we need. Often as women we're accustomed to making all the accomodations ourselves.

I hope your next appointment goes much better.

Good Morning All,

Here is another issue with Dr/Patient Relationships...

As mentioned in an earlier post, I like my MO. His whole team and I, however, have some things to work through re communication.

I noticed right away, from the initial appointment and beyond, they do nothing to educate the patient. They have never once given me a brochure, recommended a website or even provided verbal information on my condition, even since I converted to Stage IV. They have been quite good about answering my questions only.

I have substantial formal education with 3 college degrees. One of them is from the same institution from which I receive all my treatment. I believe I am capable of finding all the information I need and want on my own. I believe I am capable of preparing my question list ahead of each appoinment. But what if I am not?

But here is the bigger issue I have with this information void: What happens to the patient(s) who do not know how to find information or know the "right" questions to ask? What happens to me if I really don't know how to maneuver through this as well as I think I do? What will happen to me and other patients as a result of this information void?

I believe advocating for ourselves is a key component to obtaining the highest quality of care possible for any condition. But with MBC, the stakes are even higher...

As mentioned in my previous post, I hope this input supports the Mods as they prepare new content materials to help all of us.

If I had to choose only ONE recommendation to help fill this information void for others:

Educate yourself thoroughly and start by reading the NCCN Guidelines for Patients with MBC.

Link: https://www.nccn.org/patients/guidelines/stage_iv_...

Warmly,

V

I apologize for posting previously on this page. I didnt realize is was for Stage IV and Metastatic cancer only.

Update on communication issue with MO:

After sending a long email to MO about communication failures, I had my next appt with him this week. I did not know what to expect but brought a printout of the clinical questions from my email.

He was very neutral and said, "You found my weakness...long emails...". He read my clinical questions from my printout. Fortunately he took his time and went through each question and showed me all my scans one by one. My questions centered around the accuracy of the scans and why they did not agree with each other.

We are closer to where I want us to be as a treatment and support team. But we still have a long way to go. Had I not spoken up in my email, I would still feel abandoned by them and not know where to go with all my frustration and disappointment.

At least I know they are aware of what I need. Either we will be able to evolve into a well-functioning team or I will need to move on to a different MO. Time will tell.

Warmly,

V