Terrible, cruel visit @ MDA

[concernedrelative]

Has anyone ever had one? I will be writing up our full experience in the next 24-48 hours but suffice it to say, we were devastated by the sea change in attitude re: our prognosis vs. our initial consultation in November. I remain in a state of shock as to the incredibly poor if not heartless handling of my wife's second visit. More to come...

Best, Concerned Relative

[Ashlee H.]

Since you haven't posted what really happened, it is difficult to address your post. We don't call this a roller coaster ride for the fun of it. Ask yourself - were you mishandled and lied to...or were they trying to give you the reality of the situation? Things change quickly with cancer. I know someone who was told by her Onc she was in a really bad situation right now. The next day she saw the surgeon, and he said - no problem, we can just cut those tumors out. Then a few days later, another scan showed more tumors - so now she is back on chemo and surgery is off the table. So often our anger is put on the person/people who deliver the bad news. At work I find the people who get mad towards me are the ones I'm not telling them what they want to hear.

[1YEAR]

I can recall a tough MSK visit last summer where my husband said, " well I guess he told me to dig a hole and crawl in it!" it was probably one of the toughest days of this journey
I think some drs present reality in a different perspective to others. Some are matter of fact and right to the point and appear heartless and others give you the same info in a caring, calm, soothing way. Same info, different delivery!

Sometimes we struggle with the reality of what they said, wishing they told us what we wanted to hear. Take what the dr said, think about it, and go back to your regular oncologist and discuss when you have had time to think about what they said at MDA

Wishing you and your wife the best on this crazy roller coaster ride.

[janeandrea]

I would be interested to hear details of what your visit entailed as well. I am a patient at MDA here in Arizona, and recently had a rough time with them (mostly due to one nurse, but also a lot of their communication and administrative stuff). Which MDA did you go to, the main one?

[concernedrelative]

The one in Houston. The front desk staff is a joke having lost a 30 page fax of my wife's history in the past and then taking 2 weeks to get back to me admitting they had. This time around they didn't even bother to read a 3 line email in plain English before sending me a response which was irrelevant to my query. But that isn't the gist of my question.

My experience relates to the visit with the Doc which was so adverse to our initial consultation with the same person. I will post shortly.

[some]

Concerned Relative,

I'm so sorry to hear of your terrible experience! What are you thinking as far as your backup plan? You didn't like MSK, right? I don't mean to get ahead of things. I imagine this visit was terribly hard on you both. It's hard enough to travel away from home but to have this experience is harsh.

I'm sending good thoughts. Please continue to seek out more options. I wouldn't be surprised if some members here had ideas from their own care and experience if they had more background. Dr. Lin in Seattle comes to mind. I know MDA is supposed to be the best, but maybe you need an outside thinker for where you are now.

Serena

[Bev G]

I read a little of what happened on another thread. I'm so sorry the visit didn't go as you hoped and expected. I thought you might want to review the Regor...(?? I can never remember the correct name of that drug) thread on this board. We have had a number of CC members try it, and I think almost everyone has been really, really disappointed with the results and the pretty awful side effects. I haven't heard of a lot of folks being put on it lately. This is, perhaps, why the doc at MD Anderson wasn't excited about it as an option. As to whatever else happened, I'll just wait until you feel like talking about it.

Wishing you the best,

Bev

[sadysue]

So sorry that you've lost confidence in your doctor. Something similar happened to me. I was going to a big cancer center in PA. My oncologist was absolutely wonderful, or so I thought initially. After I finished up with my 6 weeks of 5FU prior to surgery, I told him to take a hike for many reasons - I did tell him the reasons verbally. I was so upset that I started to write a letter to the administrative board but finally forgot about it - had too many other serious problems that I was dealing with and just wound up forgetting about writing the letter. I wish I had gone through with it because this guy was a total jerk. I still went to PA for my surgery and radiation and those docs were wonderful but I wouldn't let this chemo doc treat my goldfish.

[concernedrelative]

The trip to MDA was deeply disappointing. While we are under no allusions and never have been, the Onc there in Nov. led us to believe there were more treatments available as she didn’t want to talk about any of the drugs I asked about. She said “we have time to explore choices later.” She also pointed to our need to keep the faith as she has “patients with stage IV alive 5-8 years since diagnosis” even though she knew we were in the midst of 2nd line therapy. We were told, “we are happy to act as consultants and feel free to come down any time when you feel it is appropriate.”

We always come prepared, on time, with a list of questions so everyone’s time is maximized. On this trip; after explaining our current predicament prior to travel with a short list of things we hoped they would address but only if they could, she said “none” of the established regimens would likely work for us and clinical trials were all we had. The clinical trial won’t likely work either. Five minutes into the meeting, she was visibly agitated as if we were taking up too much of her time! When I asked about the positive stories she told us in the early Winter, she said “those were strictly anecdotal patient
stories”. Asking about our genetic screening done in the Fall, the answer was “only generalized mutation, none specific” leaving no further direction for the conversation. When asked about how quickly Folfiri & Avastin resistance were hit (10 months), she said “that was lucky, usually only get 4-5 months out of it” which would have been before the time we all agreed to a 2nd consulation (sometime this Spring).

Honest to g-d I was so flummoxed, I couldn’t believe what I was hearing. I’ve been in years of business meetings, some very contentious and never seen such a violent about face in attitude. As if we were just some tremendous burden on an overscheduled calendar. I was quite clear in what we were looking for and following up with them as they had eagerly recommended 8 months prior.

We’ve tried to stay open minded, focused on our predicament and realistic but this was just rude, curt behavior we didn’t need at this juncture. Truly a Dr. Jekyll and Mr. Hyde situation. My relative, who is knowledgeable about medical matters was so upset after the visit she went back to the Doc and gave her a piece of her mind. I reject completely anyone’s suggestion that we just weren’t prepared for bad news. This was an experienced clinician treating a patient worse than shabbily.

Feel free to PM me should you wish the name of the doctor if at a minimum you want to steel yourself to a similar consulation. I’m offering this up as a frank and open experience of one patient family with one leading clinician in the community. I welcome comments, etc but am done trying to rationalize someone else’s poor behavior. Moving on to our new plan.

[annalexandria]

I'm sorry you had such a poor experience. It's bad enough dealing with this stupid disease...we don't need our doctors making things worse. The only thing I can suggest is to write a letter about your experience and send it to both the doctor and whoever supervises the docs there. I don't honestly know if it will make any difference, but if the doctor you saw can take some constructive criticism, you might be saving someone else having to go through a similar experience in the future. Hugs to both you and your DW~Ann Alexandria

[janeandrea]

I am SO sorry you had that experience!! Have you reported this to anyone at MDA? I ask because when I had my difficulty here at Banner MDA, I posted a question on the Houston/main webpage about my situation. Not only did I get a prompt response, but that response was that the VP of Clinical Operations for all of MDA wanted to speak with me about it. We set up a phone appointment, and she couldn't have been more gracious, attentive, and understanding. My issues were addressed as much as currently possible (BMDA is new, and is a partnership with Banner Health, and so they are working out some administrative hiccups or growing pains).

I won't go into it all now, but one of my issues was the nurse navigator I was assigned. The VP coordinated with the folks here in AZ, and I was given a different nurse navigator. I was about ready to leave BMDA, but the attention my concerns received went a long way in deciding to give it some time. So I recommend that you address this, if you haven't already, with the VP of Clinical Operations.

[concernedrelative]

I know my relative intends to send a letter and I'll have to find a quiet moment to do the same. Right now trying to recharge batteries and get ready for our first full day of clinical trial this week and separately a few appts to introduce ourselves to doctors we will most likely be using for local control of mets and palliative relief from conditions to the primary site.

Thanks all for your kind words, concerns and suggestions.

Best, Concerned Relative

[hannahw]

Sorry you had to go through that. It really sucks when you're sitting in an appointment and they just blindside you and then make you feel like you're inconveniencing them. Sometimes I wonder what doctors are thinking when they deliver bad news. Do they expect the patient to just absorb it right there on the spot within 5 seconds and then be able to move on? It just seems like the least the doctor could do is give you some time to process and ask questions.

I remember one time, my Dad got some bad news and after a few minutes the doc asked if we wanted to take a break and finish the appointment later in the day. I was frustrated, angry, etc and saw no need to take a break because I was ready to get myself on a big rage roll. But my Dad thought a break was a good idea so our family went to lunch and the doctor worked us back into his schedule later in the day. I don't know how the appointment would have gone had we continued, but it was better than I expected when we got back. Not the news, it still sucked, but I know I was calmer and more clear headed so I could ask my questions and actually hear the answers. Some of the shock had warn off. It just felt less chaotic, more manageable.

One thing I will say for the doctor, and maybe it's not true in this case, but I've noticed some doctors get agitated not so much because they don't have time for you, but because when the news isn't good the conversation can be upsetting and awkward. You'd think docs would be good at these conversations because they have them with some regularity, but I get the feeling that a lot of docs don't handle these conversations well. They aren't trained well. Every situation is a little different. There's a lot of ways to screw the conversation up. They might have their own set of personal problems impacting them. None of it is an excuse, you should be treated better. But maybe it's not quite what it seemed?

[juliej]

I had a very bad experience with my first oncologist. When I changed cancer centers, I mentioned it to the oncology nurse, not really expecting any reaction from her. She was horrified that an oncologist would treat a patient like that. She said there were only two reasons for that kind of behavior: 1) the doctor was burned out (it happens), or 2) the doctor had a personal situation that was influencing her behavior. About reason #2 she said, " A doctor should never ever bring personal problems into work." She continued, "They should leave them at home. While they are here, patients should be their number one and only concern."

One of those two reasons might explain the MDA onc's attitude. I am truly sorry that you and your wife had to experience this. I know you are very grounded in the reality of your wife's situation, so I too reject any suggestion that you simply weren't prepared for bad news. For whatever reason, the onc was at fault here. I'm sure of that.

[Lisahopes]

My mom was similarly treated. Inititally she was told that there were many options, then after she was poisoned by being given false instructions on Xeloda, she was still told that there are other options. Suddenly, there were none except Stivarga when she was already sufferring liver failure (about 6 months too late).

I immesesly dislike her doctor and have since heard the same from a number of other patients.