uncomfortable Oncologist call

On an Adventure

With no news from the doctor, I was off on a completely different type of adventure. I got on an airplane with my daughter to go visit a few colleges in the Northeast. I had planned this months ago.

With no Her2 results back yet, there is nothing I can do. I could sit around and wait or I could take a few days with my daughter to tour schools and have a little fun. It wasn't a hard choice.

We are outta here!

We got up early and had a crazy busy day:

5am - Drive 2 hours to Nashville Airport

10am - Fly 2-3 hours to LaGuardia Airport

2pm - Drive 4 hours (traffic) to Harford, Connecticut

6pm - Arrive at the hotel (pretty tired)

Oncologist Finally Calls

And then at 6:30pm, I finally got the call from my Oncologist. I had been waiting for someone to call since my MRI results had been released over 2 days ago. It felt like is was past time to hear from someone. I was surprised, not surprised! The conversation was a bit awkward.

Here is basically how the first conversation went after we both said hello to the other (enjoy the paraphrasing which gives you more on the context than what we exactly said to eachother):

Her: "So, did you see the MRI results are up?"

Me: "Yes, I did."

Her: "Do you have any questions?"

Me: (thoughts) Are you kidding me? Yes, duh! You throw it back on me to ask questions and are not telling me anything. Just vague BS.

Me: "Yes, it looked bad."

Her: "Yes, it did."

Me: (thoughts) WTF?!? Did she just say that. And she still hasn't told me anything. I guess this whole conversation is on me to lead. 

Me: "It looks like it is very aggressive. Maybe, you can explain to me what you see."

At this point, she basically reads the results paragraph directly off the MRI to me - I already saw it days ago, I already know what she is telling me. We go back and forth. And I feel like I am pulling teeth,

After I mention how lucky I am to have found this and that it was challenging to get the diagnosis, she gives the closest thing to an apology I am going to get from her, "The biopsy issue was a learning curve for me. I did not realize biopsies are not done on Friday afternoon at the Breast Center. We were just trying to get you in at the earliest appointment time."

Me: (thoughts) It sounds like lame excuses and no apology... your learning curve should have been during your first year working at the cancer center and not after 21+ years you have as a doctor (and the majority of it locally). Now, I am insulted even more. This is not close to an apology or affirming that I have been fighting hard for my own health. And without it, my chances of surviving would be minimal.

Her: "I, and a few nurses, have been reaching out to the pathology group to check to see if your Her2 results are ready. They aren't. I have told them it is urgent. I looked right before I called you, and they are still not ready."

Me: "I am actually surprised you called me. I thought you might wait until the Her2 results were back and wait to call me until you had both the MRI and Her2 results." 

Me: (thoughts) I am being sarcastic because of course she should call me with the MRI results; she should have called me on Friday night.

Her: "I was considering doing that." pause "Then I thought I should call since you may have seen the MRI results."

Me; (thoughts) Holy crap! This is bad... she would have waited even longer to tell me some of my results. I don't think this is the right Oncologist for me, but I feel pressured to stay due to not having a lot of time.

Since I feel trapped, I asked a few basic questions about what type of treatment I might have to take if I am Her2+ or Her2- or Triple Negative. She gives me a brief explanation, but uses a ton of acronyms like I know what they are. At this point, I am feeling like I am pretty done with this conversation. She isn't really giving me too much and we don't know what we are fully dealing with. What we do know is that this cancer is spreading fast and the longer we wait the worse it will be.

Her: "They should have your Her2 results back by Friday and you have an appointment with the Breast Surgeon. He can go over them with you then."

Me: (thoughts) Say what? Are you kidding me? It is Monday... I see him Friday. I would think they should be in before then. Aren't you going to call me back with the results? Plus, a Breast Surgeon only deals with surgery... he doesn't lead my treatment plan and isn't my Oncologist... I should see you first... and my appointment with the you is two weeks away.

Me: "Ok. I guess. I do want you to call me as soon as the Her2 results get back."

Her: "Hopefully, the results will be in soon. I did notice your appointment with me is scheduled pretty far out. We can keep it like that for now and always change it."

Me: (thoughts) WTF?!?! You don't even want to see me on Friday when I get back. I am seeing my Primary Doctor and the Breast Surgeon, but you aren't even concerned about seeing me! You should be the first face I see!

I am literally feeling shocked and realized this is not the type of Oncologist I want. It feels like she has her feeling hurt because I asked questions, had the PET testing done before she wanted and at different places than she wanted. And she - and all the doctors were wrong - I do have breast cancer. I had her telling me it didn't look like cancer and the Radiologist telling me it did not present like breast cancer. They were both wrong... they both wanted me to wait... both too set in following a standard protocol verses treating the patient. Or even listening to the patient. 

Me: "Ok." (dumbfounded)

I re-remind her that I am with my daughter for the next few days, but I would like to be contacted once the Her2 comes in. She assures me she will notify me of the Her2 results and we can then discuss the treatment plan more specifically. I am thinking, we are sorta leaving it on a good note. 

Then, she pauses and said to me, "Well, are you going to use me as your doctor or not?"

I was taken of guard and never had a doctor talk like that and in that tone to me. It was off-puting.

I did have a response: 

"I am very unhappy about the way things have gone. I really felt like that no one was listening to me and it caused a lot of stress and frustration. With the diagnosis I have and it spreading so fast, I don't feel like I have time to find another Oncologist. But, I don't know what I am going to do. I have contacted MD Anderson and am going to go there to get at least a second opinion. So, I definitely need them to get my records and things from you. I feel kind of stuck right now which is frustrating."

She basically says, "Alright. I will call you with your Her2 results and we can talk about it then."

Thank Goodness that is Over

We end the conversation. Everything around me feels awkward. I look at my daughter who is in the hotel room with me. She heard the conversation and gave me the look like that was not fun... that was the opposite of fun. Then we took a few minutes to talk about how crazy that conversation went.

A lot lingers on the very very important Her2 results to get back - they are the missing link to figuring out what type of treatment I need. But, for this moment... I am exhausted from the travel and exhausted from the conversation with the Oncologist. I continue to not feel heard or supported or even as if she cared. And this is a huge problem. I am not even sure I have time to find another Oncologist, but I am pretty sure I need to find another one. 

Guess I will have to find time because it is very important that you feel heard. And there is nothing wrong with speaking up and advocating for yourself!!! It is hard. No one wants to do it. Confrontation sucks. My goal is to do it in the most respectful way.

Now I am going to go have a great time with my lovely daughter. We are enjoying the brisk fall weather while looking at a few colleges over the next few days!

Inspiration Song, I Won't Back Down by Tom Petty & the Heartbreakers