6/5/23: My Medical Oncology NP Called Me - I Have an Arrhythmia

Just when I thought my treatment had settled into a stable state!

My medical oncology NP called to tell me that even though my recent EKG showed my QT/QTc is in the normal range, it also showed a kind of arrhythmia. It wasn't there before and so they want me to get it checked out by a cardiologist.

I am really getting kind of tired of this M.O. Every time I think my treatment is stabilizing, something new pops up. I was fine on exemestane, until my ovaries kept making too much estrogen, and so I had to switch to Tamoxifen. I was fine on Tamoxifen, until I developed non-alcoholic fatty liver disease and had to switch to anastrozole, which meant I had to get my ovaries out (since they were still making too much estrogen). A routine pre-operative EKG showed I had borderline QT prolongation, which resolved after I stopped Lupron, but now I have this arrhythmia! Ugh.

Actually, my NP said that she wanted to send me to a new cardiologist because the one who found my borderline QT prolongation works in a clinic and doesn't take regular patients. Knowing the value of self-advocacy, I reminded her that I used to see a cardio-oncologist back when I had a low ejection fraction while on Herceptin. My NP said she would call that cardio-oncologist and figure out next steps for me; maybe the cardio-oncologist can compare my EKG with previous EKGs and see that the arrhythmia is harmless, or else I might need to schedule an appointment. Either way, she seems to think that my yearly EKG screenings going forward should be done by cardiology. 

Now, I know there are a lot of long-term risks related to ovary removal, but I haven't found anything specifically mentioning heart arrythmia, and anyway my first EKG after my oophorectomy was fine. But what changed between that EKG and this EKG? I got covid. And there's plenty of evidence that COVID-19 can cause heart problems. 

What strikes me, too, is that, covid or not, whatever this is, it probably would not even have been found if I weren't getting screening EKGs as part of cancer treatment.

6/13/22: I Really Do Need Medical Clearance

This morning I got an unexpected message in the online patient portal from my medical oncology NP saying there is an abnormality in my EKG!

It looks like my QTc is longer than normal.

First, apparently an electrocardiogram is abbreviated with either EKG or ECG. This page explains "QT" as follows:

"Doctors name the different waves on the ECG graph P, Q, R, S and T. Letters Q through T correspond to the heart cells’ “recharging” (repolarizing) after a muscle contraction. Abnormalities in the heart cells can slow the process of electrical recharging, prolonging the QT interval as shown on an ECG."

This page shows a small image of what the "QT" interval looks like on an EKG graph.

"QTc" refers to "corrected QT interval". This page explains "QTc":

"The QT interval is longer when the heart rate is slower and shorter when the heart rate is faster. So it's necessary to calculate the corrected QT interval (QTc) using [a mathematical formula]."

Anyway, mine was 473 ms. This page says normal QTc range for women is 360-460 ms. 

I started going down the rabbit hole of trying to understand what a prolonged QTc could mean. There's a condition called Long QT Syndrome (LQTS), but I don't think I have it because the congenital form is rare and I have no symptoms; there is an acquired form, but I'm not taking / don't have any of the medications or conditions that cause it. Also, I found this random page that says computer error or lead misplacement can cause inaccurate QTc calculations. So that's probably what it is, right?

Okay, all of that was just a long preamble. The point is, my oncologist could not clear me for surgery with this prolonged QTc, so they want me to see my PCP. My oncology office actually coordinated with my PCP office so before I even had a chance to call my PCP, they called me and had already set me up with a same-day appointment. My PCP did another EKG, and lo and behold, it's normal. The QTc today was 426 ms, perfectly within the normal range. Great! 

But no. My PCP said she still could not clear me for surgery because what about Friday's EKG? We don't know for sure that Friday's report was inaccurate, so what does it mean if my QTc is fluctuating wildly? So, my PCP wants me to see a cardiologist. 

In retrospect, I'm annoyed because if my PCP would not have cleared me for surgery no matter what - even with a normal EKG - then why did we waste time going through my PCP at all? Why didn't my PCP tell my oncologist to just send me directly to my cardiologist? Plus, she told me to call the cardiologist myself, adding, "If you have trouble making that appointment, let us know, and we'll help out." Since this is super time-sensitive, it bothered me that she didn't have her office just make the appointment for me, the way my oncology team did for this PCP appointment.  

I went straight home and called my cardio-oncologist. I called the first number I found, and I think it was a scheduling line. At first I asked for an appointment with my own cardio-oncologist, and then I said to check the schedule for any cardiologist, but of course there were no openings before Thursday. The scheduler said she would send a message to my cardio-oncologist's office about my situation, and they would call me back.

In the meantime, I called my Cancer Center. A nurse had called this morning to make sure I had the PCP appointment scheduled, and she had asked me to call her back with an update after the appointment. I told her about trying to get a cardiology appointment, and she was quite surprised - and dare I say annoyed! - that the PCP's office didn't set that up for me. She said quite frankly, "They should be facilitating that for you." 

Surprisingly, in the middle of that phone call, the cardio-oncologist's office called me. That was quick! I took that call, and explained the whole situation again to the nurse. She was very sympathetic, could hear that I was getting emotional and tearing up, and she said she'd talk to the cardiologist and get back to me.

I called the oncology nurse back just to update her on that phone call. She said it sounds like I did a good job advocating for myself. We'll see if the cardiologist's office calls me back tonight, and either way, I should call the oncology nurse again tomorrow morning with another update.

At this point, I left the house to pick up my son from school. When I got back, there was no message from the cardiologist's office, so I decided to call my PCP's office and let them know I do need their help getting an appointment! I explained the entire situation again to the person who answered the phone, and she said she'd talk to the doctor about it. 

Incredibly, the cardiology nurse did call me back! Just before the end of the work day. She said my regular cardiologist doesn't have any openings, but she made an appointment for me at the "cardiology clinic", like an urgent care clinic just for cardiology. Thankfully, the appointment time does not interfere with the pre-surgery covid testing I'm supposed to get tomorrow morning, but I'll have to drive to the main hospital in the city. I'm nervous that there will actually be a problem and I won't get cleared for surgery, but at least I have an appointment. I thanked the nurse profusely! She was so kind and patient, she even said, "Everything will work out, I hope this helps to reduce your stress." So compassionate of her to say!

I am slowly starting to brace myself for the possibility that I will need to postpone my surgery. I really hope that doesn't happen because I've already been laying low for about a week now, to reduce my risk of covid exposure, and I just don't want to have to do all this surgery planning again, coordinating among oncology, GYN, PCP, cardiology, and the hospital!! GAH!!!

12/28/20: I Checked My Insurance Claims Online

The staggering cost of health care never ceases to amaze me. I am so thankful we have insurance. No one should have to go through cancer while also worrying about how to pay the medical bills.

9/4/20: Maintenance Herceptin #13 + Lupron: $15,322.48
9/24/20: Medical Oncologist Appointment: $260
9/24/20: Maintenance Herceptin #14: $14,856.32
9/29/20: Exemestane: $1,499.99
10/1/20: Port Removal Surgeon: $748
10/1/20: Port Removal Hospital: $2,616.67
10/2/20: Lupron + Flu Shot: $875.97
10/30/20: Lupron: $571.16
11/24/20: Echocardiogram Cardiologist: $243
11/24/20: Echocardiogram Hospital: $1,886
11/27/20: Lupron: $571.16
12/3/20: Cardio-Oncology Appointment: $288
12/3/20: Cardio-Oncology Hospital: $248

Total cost to date: $414,734.93
With insurance, cost to me: $8,254.63

12/3/20: Cardio-Oncology Appointment

Everything's fine!

The appointment started with a quick EKG. It took longer to attach the sensors to my legs, arms, and torso than it did to actually take the recording. 

I had already printed out my echocardiogram report from the online patient portal. The ejection fraction is now 57%, which is well within the normal range of 54-73%. My baseline was 63%, so I asked the doctor if my ejection fraction might continue to improve and return to baseline? She said maybe, and I got the impression that it really doesn't matter, since the number is already considered normal. Anyway, I won't be getting any more echocardiograms, so I'll never know!

The doctor did a brief physical exam, took a listen to my heart, and said everything sounded great.

I asked about my blood pressure, since my bottom number is sometimes in the 80s and 90s. She said to monitor it for a week or so, and ideally I should be calmly sitting down for 10 minutes before taking a measurement! If it's consistently above 90, then I should let my PCP know.

She said there's no reason to worry about any long-term side effects to Herceptin, so she can graduate me from cardio-oncology. Yay! That's one less thing to worry about. If I have any symptoms like heart palpitations, shortness of breath, or fluid retention in my legs, I can reach out to her again.

9/2/20: I Checked My Insurance Claims Online

Our insurance coverage year starts in July, so we paid the full deductible on the first appointment in the new coverage year. After that, insurance paid all claims in full. I will never change my mind: everybody deserves to receive medical treatment free from financial worry and stress. 

5/20/20: Medical Oncologist Appointment: $368

7/2/20: Maintenance Herceptin #10: $15,122.75, I paid $4,000

7/9/20: Physical Therapy Virtual Appointment #20: $372

7/10/20: Lupron: $571.16
7/24/20: Maintenance Herceptin #11 (Including Medical Oncology NP Appointment): $16,468.75
7/27/20: Echocardiogram Cardiologist: $243

7/27/20: Echocardiogram Hospital: $1,133

7/30/20: Physical Therapy Appointment #21: $348 

8/6/20: Cardio-Oncology Appointment: $288

8/6/20: Cardio-Oncology Hospital: $227

8/7/20: Lupron: $571.16

8/14/20: Maintenance Herceptin #12: $14,750.21

Total cost to date: $374,748.18
With insurance, cost to me: $8,254.63

8/13/20: I Emailed My Cardio-Oncologist

My cardio-oncologist had asked me to monitor my blood pressure at home and let her know the results. Conveniently, Ken already has a home blood pressure monitor.

I've been taking measurements 3 times a day. For the most part, my systolic blood pressure (the top number) is in the 110s to 120s, and my diastolic blood pressure (the bottom number) is in the 80s, occasionally rising into the low 90s or dropping into the high 70s. Most of my measurements are under the 140/90 limit, but the bottom number does like to creep up above 90.  

Last night I used the online patient portal to send my cardio-oncologist a message with 5 days of blood pressure data. I was pleasantly surprised to get a quick response from her this morning. She said my numbers were "very reassuring". 

I'll still keep an eye on my blood pressure, but I'll try not to worry about it too much. It's all a bit depressing actually; having to think about my blood pressure makes me feel old.

8/7/20: My Cardio-Oncologist Called Me

I wasn't even expecting a call! 

She called to let me know that she wasn't able to get that other measurement she mentioned at my appointment. She said it's not a problem, everything else still looks normal. 

She reminded me to keep an eye on my blood pressure and to send her an update via the online patient portal with a few days' worth of data. 

I asked her what the treshold was for "high" blood pressure, and she said 140/90 is the upper limit of what we want to see. 

8/6/20: Cardio-Oncology Appointment

I was anxious going into this appointment, though I don't know exactly why. I had already figured that whatever the cardio-oncologist said, I'd be okay with it, even if she recommended stopping Herceptin, or taking medication.

In the exam room, a nurse did a quick EKG. She also took my blood pressure and remarked that it was high.

For a few months now, sometimes when I've gotten my vitals taken before treatment, my blood pressure has been a little high. Not consistently, but it used to fluctuate among the green, yellow, and orange zones of the table on this page, and now it fluctuates among the yellow, orange, and lighter red zones. By chance, at my recent PCP appointment, my blood pressure was perfectly in the green zone, so high blood pressure wasn't something we discussed. 

Incidentally, my blood work from the PCP appointment also came back showing high cholesterol. This blog is all about my cancer, so I didn't think it was relevant, but at today's appointment, the cardio-oncologist asked about both my blood pressure and cholesterol. Of course they are both related to heart health, which is now being affected by Herceptin. I also did some Googling, and it turns out that there's a connection between menopause and high blood pressure, and also between menopause and high cholesterol. It's difficult to identify a direct cause, but since I do have hormone therapy to thank for chemically-induced menopause, maybe they are cancer-related after all. I'll have to work harder at exercising and eating well.

Anyway, the cardio-oncologist asked me a lot of questions. I don't think I have any symptoms of heart failure. She listened to my heart, which sounded normal. In the end, she didn't think there was anything to be concerned about. Phew! I can finish my Herceptin treatments. 

She said she doesn't usually worry until the ejection fraction gets to 50%, and also that the ejection fraction isn't an exact measurement, so there's wiggle room. 

She also mentioned another measurement that is not always reported on echocardiograms, I think she called it the strain. She said she would follow up with the cardiologist who authored my echocardiogram report to see if they could provide this measurement. If it turns out to be problematic, she would consider putting me on some kind of medication. If the measurement is not available, then we'd proceed assuming it's fine. 

Basically there is no action to be taken at this point, but she assured me that she usually acts aggressively to protect the heart, especially for someone my age. I did find that reassuring, because it means my case really must not be very troubling.

I'll have a follow-up echocardiogram and appointment in a few months, after I'm finished with Herceptin. In the meantime, she recommended I keep an eye on my blood pressure using a home monitor, and maybe even send her some data (a couple measurements over a few days) through the online patient portal. 

8/3/20: The Cardiology Department Called Me

Someone from my hospital's cardiology department called and said my oncologist had put in an order for me to see a cardio-oncologist. This person was so pleasant and friendly, I wish all phone conversations with customer service and administrative assistants could go so well!

Normally, I'd have to go to the main hospital in the city, but I lucked out; the cardio-oncologist sees patients at a local satellite office once a month, and my appointment request came just in time for me to see her on Thursday at a nearby suburban site. It's not the same location as my Cancer Center, but about the same distance away in the opposite direction. 

I haven't heard from my oncologist's office. I'm guessing they won't call, and that the referral to the cardiologist basically serves as the "action taken" in response to my phone call. I do wonder... If I hadn't called them about my echocardiogram results, would they have called me? I have to assume that my oncologist saw the echocardiogram report. Maybe she wasn't worried and wouldn't have said anything, but the mere fact that I expressed concern prompted her to send me to the cardio-oncologist, since it's obviously something I want to address? Or maybe she would have called, but I just happened to call her before she got around to it? Judging from the responses I got to my posts in Facebook support groups, it sounds like seeing a cardiologist is the appropriate course of action, and it makes me think again about how important it is for me to be on top of my own medical care. 

Anyway, I didn't think of it right away, but a couple hours later I remembered to call my PCP's referral line to get a referral to the cardiologist. 

Incidentally, I also called them a couple weeks ago to renew my referral with the genetic counselor. I wasn't sure if I needed one. I don't think the phone call counted as an actual appointment, but I figured it wouldn't hurt to have the referral.