9/12/26: Cost Update

Wow, I haven't done a cost update in over a year.

Our health insurance has a July-to-June coverage year, so this update includes my cancer-related costs through all of the last coverage year (which ended in June 2026) til now. 

We have a high deductible health plan, which means we pay a lot out of pocket at the start of each coverage year, and then at some point towards the end of our coverage year we meet the deductible, and the remaining appointments until the end of June are fully covered.  

Thankfully, prescriptions work differently, and my anastrozole is always fully covered. 

So for this update, I'll list the amount billed / retail price (which gets added to the "total cost"), and then in parentheses I'll include the amount I had to pay after insurance processed the claim (which gets added to the "cost to me").

One more note: Usually there are two charges for each appointment, one for the hospital and one for the provider. As of the time of this post, however, only the hospital charge for my last oncology appointment shows up on my health insurance online account. 

10/16/25: Anastrozole (generic): $545.99 (Covered by insurance)
1/12/26: Anastrozole (generic): $545.99 (Covered by insurance)
4/10/26: Anastrozole (generic): $545.99 (Covered by insurance)
6/15/26: Medical Oncologist Appointment Hospital + Blood Work: $1,035.00 (Covered by insurance) 
6/26/26: Cardiologist Appointment + EKG: $440.00 (Covered by insurance) 
6/26/26: Cardiologist Hospital + EKG + Blood Work: $510.00 (Covered by insurance) 
7/9/26: Anastrozole (generic): $545.99 (Covered by insurance)
8/18/26: Bone Density Radiologist: $138.00 (I paid $26.25)
8/18/26: Bone Density Hospital: $1,082.00 (I paid $325.15) 

Total cost to date: $486,575.30
With insurance, cost to me: $17,260.03

6/26/26: Cardiology Appointment

Last Friday I had my annual cardiology follow-up.

First, some background. I've been tracking my blood pressure at home and on average it's 115/80. According to this website, a "normal" reading is below 120/80. My diastolic number (the bottom one) is frequently over 80, so that's essentially what I'm tracking and hoping to bring down.

At the appointment, the medical assistant took my blood pressure, and it was 128/79 - only the systolic (top) number was high, which was unusual for me. My cardiologist later said she considers the threshold of concern to be 130/80, so she thought my measured blood pressure was fine, but personally I decided to chalk it up to "white coat hypertension", which I think I've experienced before.

Anyway, as I said, it's usually the bottom number I'm worried about. I've searched online and asked my cardiologist before, and having only the diastolic number be elevated seems to be kind of a mystery. This website literally says, "Doctors do not know precisely why it happens, but obesity, high triglyceride levels, smoking, and alcohol may contribute." None of those apply to me, so who knows. Today the cardiologist kind of implied that it "doesn't matter" which number is high because the treatment for high blood pressure is the same whether it's the top or bottom number that's high, or both. 

Since my blood pressure is on the borderline for being high, she strongly advised me to: 

• Do 150 minutes of cardio exercise per week (She said brisk walking is fine.)
• Do 30-60 minutes of strength training per week (She said even 10 minutes twice a week with 5 lb. weights would be good.)
• Drink more water (I think she suggested at least 30-40 oz. a day, which seems low, so maybe I'm misremembering... I generally aim for (and usually fall short of) 60-70 oz. per day.) 

As she said all this, I actually felt disappointed in myself because I've already been trying to do all those things for reasons in addition to cardio health, but have been struggling with doing them consistently. The exact same recommendation for walking helps to lower breast cancer recurrence risk, the strength training was already recommended by my oncology NP to help prevent bone density loss, and my cardiologist herself talked to me 2 years ago about staying hydrated for heart health.

I have this cycle where I do 1 or 2 or all 3 things really well for a stretch, but then life gets busy and I fall out of the habit, and then I have to work hard to re-establish routine. Life has been very busy since mid-May so I've been well out of practice for a while. But now it's doctor's orders to do these things, so I will redouble my efforts!!

My EKG showed "no significant change" from last year, which is to say, it's still a little weird. She reminded me that various parts of my cancer treatment - specifically, Herceptin, Lupron, and aromatase inhibitors (which I am still currently taking) - all can be "cardiotoxic", which is why I was sent to cardiology by oncology in the first place. So even though I continue to not have any symptoms like breathlessness or fatigue or palpitations, and my doctor continues to be "not worried" about the abnormal EKG, she still wants to have yearly follow-ups, just to keep an eye on everything.

Finally, I got sent for another blood draw. Apparently there's this one test she ordered - lipoprotein (a) - that's supposed to be a good indicator of whether or not my risk for a cardiovascular event is elevated. Depending on the results, she might want to consider treatment with medication even earlier. Of course I'd rather not be taking any more medications, but I guess we'll see.

8/29/25: Cost Update

By the time I had my annual oncology and cardiology appointments in June, at the tail end of our July-to-June insurance coverage year, we'd finally met our deductible, which means those appointments were fully covered. 

The only other cancer-related medical charges I had were for anastrozole, which thankfully is always fully covered. 

So for this update, I'm only listing the amount billed / retail price (which gets added to the "total cost"), since the cost to me was $0.

10/24/24: Anastrozole (generic): $545.99 
1/22/25: Anastrozole (generic): $545.99
4/18/25: Anastrozole (generic): $545.99
6/5/25: Medical Oncology NP Appointment: $273.00
6/5/25: Medical Oncology NP Hospital: $181.00
6/24/25: Cardiologist Appointment + EKG: $353.00
6/24/25: Cardiologist Hospital + EKG: $504.00 
7/19/25: Anastrozole (generic): $545.99

Total cost to date: $481,186.34
With insurance, cost to me: $16,908.63

6/24/25: Cardiology Appointment

Not too much to report for this appointment. 

I've been abbreviating "electrocardiogram" as "EKG", but "ECG" is equally common.

So, the cardiologist said my EKG still shows the same "non-specific" abnormalities as before, but she has no idea why. Her online notes say, "Compared with ECG 6/25/2024, STT changes less prominent." Given the results of my most recent stress test and echocardiogram, and the fact that I don't report any cardiovascular symptoms (like shortness of breath, dizziness, or fatigue), the doctor didn't seem worried at all. But she did say I should continue to get a yearly EKG for monitoring purposes. 

She also said my next echocardiogram can be in 5 years from my last one, so in 2029. 

With talk of access to updated covid vaccines being restricted this fall, I asked if I would qualify as having a high-risk condition. She said yes, mentioning my history of cancer more than my history of heart conditions.

We actually spent more time talking about non-cancer-related issues, like cardiovascular health in general. My blood pressure and cholesterol are both a little high, so we covered the usual instructions of exercising regularly and minimizing sodium intake. 

She used a cardiac risk calculator, which put my risk of having a cardiovascular event in the next 10 years to be 1%, well below the 7.5% threshold for concern. 

She also talked about a CT scan for calcium deposits in arteries as something we might do at some point, as a precursor to considering statin medication. Not really sure why she mentioned this now, since she said my cholesterol numbers aren't high enough yet to be really worried (and if they were, I'd probably want to try diet and exercise first), plus she said this test isn't covered by insurance.

6/25/24: Cardiology Appointment

Today I had a 1-year follow-up appointment with my cardiologist.

The first thing they did was do an EKG. Without being specific, my cardiologist said the results were "weird in the same way as last year." In last year's appointment notes, she called it "inferior and anterolateral ST depressions". In this year's appointment notes, she mentioned only "NS diffuse STT changes", which I looked up and appears to refer to "non-specific" changes in the "ST-T wave" that are "seen in all or most of the leads". 

I have no idea how to read an EKG printout, but in the past I still liked to keep them for my records. Now my hospital has moved to a new online system, which doesn't give me access to EKG results! Too bad. 

The cardiologist asked me a bunch of questions to see if I have any symptoms of heart trouble. Do I get winded going up a flight of stairs? Do I get tired while grocery shopping? Do I ever get dizzy? I don't seem to have any symptoms, so she'll just continue to recommend EKGs every 6-12 months while I'm on hormone therapy. I don't think it's clear whether these EKG abnormalities are related to hormone therapy or covid, so I guess there's not much to do but monitor it.

I asked her about magnesium supplements. I had previously asked my medical oncology NP about taking magnesium for anxiety, and she was supportive of the idea, though my PCP was not keen on it. My cardiologist said she's not concerned about heart issues as long as I took a "typical" dose, but then went on to say things similar to what my PCP said, like instead of supplements, she favors getting more magnesium naturally via diet, and trying to manage anxiety via lifestyle changes.

Anyway. We talked a lot about my blood pressure, which is just borderline high. She said the goal is for my blood pressure to be below 130/80. My top number is very consistently below 130, but my bottom number hovers around 80. I like that she talked about wanting to lower my chances of needing medication some day, which means I really need to make more of an effort to consistently exercise / walk for 150 minutes a week. We also talked about minimizing sodium intake, eating more vegetables, and staying hydrated.

Finally, she ordered an echocardiogram, which I scheduled for August, to make sure my ejection fraction is stable in the normal range. She said as long as it's in normal range, even if it's low, we'll just monitor it via echocardiograms "periodically," which I assume means some frequency less often than yearly.

8/8/23: Cardiology Stress Test

Yesterday I had my cardiology stress test, which was recommended at my last cardiology appointment.

My cardiologist had told me that the doctor on duty to attend to the test may not be her, and it wasn't. It was another woman, who was masked! She was the only other person in the office, besides me, to wear a mask. 

I was told to avoid caffeine for 2 hours before the appointment, and to wear sneakers and comfortable clothes.  

There were 2 people in the room with me the whole time, a nurse (I think, she may have been a medical assistant, I'm not sure) and a technician. They were both very nice, but not talkative, which was okay with me. 

They had me change into a johnny from the waist up. The nurse put a bunch of leads onto my torso, all of them connected to a belt they had me wear, so the wires didn't get tangled. They did an echocardiogram and an EKG and also took my blood pressure, for baseline values.  

Before we could start, we had to wait for the cardiologist to come in and give the okay. The nurse told me the doctor was in with another patient, and we actually waited for like 15 minutes, in almost complete silence. Haha. It was fine. I really don't mind when doctors are late, because I always figure, if I'm the patient the doctor is with, I'd want them to take the time to make sure I got the care I needed.

The stress test was divided into 3-minute intervals, designed to quickly increase a person's heart rate while they walk. There was a treadmill right next to the examination table, and in front of the treadmill was a big poster showing a numerical scale, with numbers corresponding to descriptions like "very light" and "very, very hard". During each 3-minute interval, the nurse asked me to describe the level of exertion I felt, and she also took my blood pressure while I walked.

First, the treadmill was set to a slow speed and small incline.  For this first part, I think I said the effort felt "light".

After 3 minutes, the treadmill incline and speed automatically increased. I described the exertion at this point as in between "fairly light" and "fairly hard" - it wasn't either, it just felt fine.

After 3 more minutes, the treadmill incline and speed automatically increased again. This time, I think I said the exertion felt "fairly hard". Towards the end of this 3-minute interval, the cardiologist said I was doing well above average! 

The nurse asked if I wanted to do the next level, which many people don't even get to. She said the setting would be very fast, and some people choose to jog it. I was curious to see how fast the last setting would be, so I said yes to trying it. At the 3-minute mark, the treadmill incline and speed increased again. I did it as a very fast walk, which I described as "very hard"! They had me do it only for 2 minutes, instead of 3.

After a total of 11 minutes, they stopped the treadmill, and I was instructed to keep walking until the treadmill came to a complete stop. Then I had to lie down on the exam table and roll onto my left side as quickly as possible so that the technician could do an echocardiogram while my heart rate was at its peak. The nurse also took some EKG readings and measured my blood pressure.

The cardiologist looked at all the data in real time and said nothing jumped out at her as problematic. She was very reassuring, but was also careful to say that it would take a few hours to review the details, and she would send the report to my cardiologist.

Back at home, later the same day, I was able to see my report in the online patient portal. The word "normal" appeared a lot, so I hope it means everything is fine! The only thing I really noticed was that it said my ejection fraction is 50-55%. Back when I was getting regular echocardiograms while on Herceptin, my baseline pre-Herceptin ejection fraction was 63%, and my last measurement after stopping Herceptin was 57%. So, it does appear that my ejection fraction never fully recovered from Herceptin. I'll have to remember to ask my cardiologist if this is something I should be concerned about.

6/26/23: Cardiology Appointment

The first thing I'll note is that no other patients were masked, and the only masked staff was a single medical assistant. This lack of masking was particularly surprising because I naively thought that cardiology, of all medical spaces, might have a higher masking rate because of the well-documented heart-related risks associated with COVID-19. Add to that, my hospital network is currently in the local news for having its first covid outbreak since ending their mask mandate, so clearly covid risk in medical facilities is still a concern. 

Anyway, other than not wearing a mask, my new cardiologist was nice enough, and explained things well. She clarified that the "arrhythmia" seen on my last EKG was a "sinus arrhythmia", which is actually normal! She said she explained this to my medical oncology NP, but still wanted to see me to 1) keep an eye on my heart function after having had Herceptin, and 2) just make sure there's really nothing wrong, since all my EKGs seem to be a little different every time.

She went through a lot of medical history questions, and clarified when I was taking which medications. She confirmed that I did not change medications between my previous EKG and the most recent one. I made a point to mention that I did get covid during that time, and she asked me a lot of questions about fatigue, shortness of breath, activity level, etc. She repeated several times that she "wasn't worried" because, despite all these weird EKGs, I have no physical symptoms of heart problems. (She did not use the word "weird", that's my word.)

At the start of today's appointment, a medical assistant took my blood pressure and did another EKG. The blood pressure was a little high, and the EKG had a small anomaly; the doctor drew a typical heartbeat pattern and said that where my heartbeat would be expected to go up and then level out, it actually went up and then a little down and then leveled out. (In the appointment notes that I can see online, she called it "inferior and anterolateral ST depressions".) She pointed out that EKGs are just a snapshot of heart activity, and she thinks the EKG anomaly was related to my blood pressure being temporarily high just because of the appointment setting (a thing sometimes called white coat hypertension, which I think I may have encountered before). 

She did take my blood pressure again, towards the end of my appointment, and lo and behold, it was lower than before. She suggested I take my blood pressure at home (a few times a week, at different times of day, after sitting for 10 minutes, and with my arm resting on a surface), and bring the numbers to my next appointment.

Today's EKG showed no sign of the prolonged QT interval, but the cardiologist did recommend that I stay away from certain medications that may affect QT interval. (She included a list of medications to avoid in the appointment notes that I can see online.)

She also said I should come in for a stress test. I would spend some time on a treadmill, and they'll take measurements before and after. Additionally, I should come back in 1 year for a follow-up.

I made both these appointments before leaving the office. I am pretty sure that the person doing the scheduling at the front desk was the same person who called me before, and she was just as gruff in person as on the phone!

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.

6/1/23: Medical Oncology NP Appointment

Today's appointment was my first time going to the Cancer Center since the state's universal masking policy for medical facilities ended. I was so disappointed to see not a single employee wearing a mask. Besides me, I saw only 2 other patients in masks. This is a place where actual immunocompromised and high-risk people go to get life-saving medical care, and still nobody could be bothered to help protect them by mitigating the spread of COVID-19. This reality has been a very hard pill for me to swallow.

(Without giving away my location, I'll just note that the COVID-19 wastewater data for my county shows values almost as high as Winter 2020-2021 levels, relatively low compared to our ginormous Omicron peak, but certainly not objectively low.)

Interestingly, my NP told me that even though masks aren't required, they do still expect symptomatic people to wear masks. She said there was a woman recently who came in coughing, and when she refused to wear a mask, they actually sent her home and made her re-schedule! While this kind of policy doesn't address asymptomatic transmission, it's definitely better than nothing, so I appreciate it.

Now, about my appointment.

I don't know for sure if this was the first time this has happened, but I actually had nothing new to report. I still have all my usual side effects from surgically-induced menopause and anastrozole - joint stiffness, hot flashes, anxiety, poor sleep - plus lingering neuropathy from chemo, but none of that is new.

My NP said that even though I consider my hot flashes manageable, and they "only" happen a few times a day - an improvement from when they used to happen many times a day - she said I don't have to live with them, and she asked if I wanted to try Effexor, which can treat both hot flashes and anxiety. (I Googled the medication at home, and it turns out it's actually an antidepressant that is frequently prescribed off-label for menopausal hot flashes.) 

I'm not keen on taking medications if I can help it, so I asked about magnesium, which the Hormone Repair Manual recommended for hot flashes, and which Google says can also help with anxiety. My NP was supportive and said she takes magnesium herself, for other reasons. She recommended 300-400 mg daily in the form of magnesium glycinate. There are many forms of magnesium, and the Hormone Repair Manual also recommended magnesium glycinate. (My NP said magnesium citrate would be fine, too, but my local pharmacy didn't have it. She also said to avoid magnesium oxide because diarrhea is a common side effect.) My NP suggested I start by taking it every other day, just to make sure I don't have any negative side effects, before increasing to daily use. 

Moving on, we discussed my hepatology appointment, and then she did a physical exam.

She did not mention doing an EKG, so I asked if I should get one. Once again, my self-advocacy paid off; she confirmed that my notes said I should get an EKG every 6-12 months. My last EKG was 7 months ago, so she decided we could do one today, and then do them yearly moving forward. Getting an EKG is a little funny because it takes a while to position all the leads, but then the procedure itself takes just a few seconds, and all the leads that took so long to put on get taken right off. Anyway, I took a peek at my printout and saw that my QT/QTc was 424/424 ms, which is within the normal range. Yay!

Planning ahead, my NP said that I could make my next appointment in a year. Normally I have an oncology appointment every 6 months, but since I'm relatively stable right now (knock on wood), she said it's good enough for me to have my Breast Center appointment in 6 months (already on the calendar), and then my next oncology appointment 6 months after that. But, since my next Breast Center appointment is expected to be my last, they may have me go back to having oncology appointments every 6 months after next year. In the past I have been a little nervous about lengthening the time in between appointments, so she reassured me that I can always call if something comes up; surprisingly, I actually felt fine about not returning sooner, maybe because I haven't had any unexpected complications lately, but also because I'm not too eager to go back now that they've dropped their mask mandate. 

5/20/23: Cost Update

I actually haven't checked my insurance claims online lately, I guess because my appointments are fewer and less frequent these days. But here are some old costs that I hadn't posted yet.

Our health insurance coverage year starts on July 1, re-setting the deductible, so all these appointments starting last summer required out-of-pocket payments. We have a high deductible health plan, and since my cancer-related appointments have been tapering off, I wonder if we'll even meet the deductible this year. 

I thought it was particularly ridiculous that there was a hospital facility charge for the phone appointment with my hepatologist, but at least I didn't have to actually pay anything.

7/12/22: GYN Surgeon Appointment: $192.00 (I paid $140.02)
8/5/22: Anastrozole (generic): $545.99 (No cost to me)
8/16/22: Blood Work for Hepatology Appointment: $113.00 (I paid $64.28)
8/24/22: Hepatologist Phone Appointment: $260.00 (I paid $260.00)
8/24/22: Hepatologist Phone Hospital: $105.00 (No cost to me)
11/3/22: Anastrozole (generic): $545.99 (No cost to me)
11/10/22: Medical Oncologist Appointment: $326.00 (I paid $316.30)
11/10/22: Medical Oncologist Hospital + EKG: $889.00 (I paid $450.73)
11/10/22: EKG Technician: $27.00 (I paid $20.25)
1/9/23: BreastCare NP Appointment: $221.00 (I paid $190.72)

Total cost to date: $464,025.21
With insurance, cost to me: $11,649.99

11/10/22: Medical Oncologist Appointment

My oncology appointments are getting more spread out, which is a good thing; fewer problems means fewer appointments. My last appointment was exactly 5 months ago, and my next appointment will be in about 7 months. After that, my oncologist said I can move to yearly appointments, ideally timed in coordination with my yearly breast NP appointments so that I alternate between the Breast Center and oncology every 6 months. My oncology appointments will continue to be scheduled with either my oncologist or oncology NP. I am acutely aware of how I used to feel when going 3 months in between appointments felt "too long", and it's interesting how I'm clearly in a new place now, able to welcome the longer time in between appointments.

But I'm getting ahead of myself.

I arrived 15 minutes early, guessing that I would need time for a blood draw, which I did.

Checking in at the registration desk, I felt a weird sense of sadness when I looked around and recognized nobody. I had gotten so used to seeing familiar faces that seeing no familiar faces at all made me feel kind of lonely. What's more, as I was getting my blood drawn, my old port nurse was in the room, too, but did not recognize me. Granted, I was masked, and back when I used to see her, I always wore a hat to hide my hair loss. Still, I did not say anything to her, for fear that she would still not recognize me even if I reminded her.

Speaking of masks, I'm very glad that medical facilities in my area still require masks, which I know is not the case across the country. Still, I will never understand why, 2 1/2 years into this COVID-19 pandemic, medical facilities continue to provide only surgical masks to staff and patients, knowing that they do not provide sufficient protection against airborne viruses. I was impressed that many, if not most, of the patients I saw were wearing high-quality N95 / KN95 / KF94 masks, though there was one guy who did not wear a mask at all. I think he was the escort for a patient who was wearing a mask, and I don't understand why he was not asked to wear a mask, or denied entry for not wearing a mask.

Anyway, during my blood draw, the phlebotomist had a difficult time filling the tubes. By now I well know the drill of having to drink extra water starting the night before a blood draw, but I just plumb forgot! I felt pretty sheepish about making the phlebotomist's job harder. 

As usual, I got my vitals taken, and was relieved that my blood pressure was fine, since it's given me a little trouble in the past.

I was glad to see my oncologist. I know she's not a friend, but she was a familiar face and has always been supportive. 

I asked if I would be getting an EKG today, and she seemed surprised at the question. I have learned to not hold it against my doctors when they don't know my whole medical file; I figure, they have so many patients, and only a few minutes to review each file before an appointment, so it's okay if they don't remember everything, as long as they think things through after I bring something up. In this case, I reminded her that the cardiologist who did my pre-surgery clearance said I should get an EKG every 6-12 months while on hormone therapy. Once she confirmed that note in my medical file, she went ahead and arranged for an EKG to be done at the end of the appointment.  

We then discussed my concerns. First, I said I'm still feeling the same very mild neuropathy in the first three fingers of both hands, presumably a remnant of chemo. At this point, I mostly ignore it, but it's there.

Then, I told her about various menopause-related side effects, presumably from taking anastrozole and having had my ovaries out. Stiffness in my fingers, hot flashes, and vaginal dryness are not new, and my doctor reminded me that if my side effects start to interfere with my daily living, I don't have to suffer, there are options, including trying another aromatase inhibitor called letrozole. 

I did tell her about a new concern, which is that my thumbs sometimes hurt now. They are stiff like the other fingers, but additionally, whenever I try to grasp or squeeze something (like a bottle), the thumbs hurt and feel weak. Sometimes it's mild and is just an inconvenience, but other times it's more severe, like I end up using both hands to hold a bottle to make sure I don't drop it. My doctor said arthralgia (pain in joints and muscles) is common with anastrozole, but there's always a chance it could be arthritis. Again, it came down to how bothersome the symptom is: if it's very problematic, I could get imaging to rule out or diagnosis arthritis, and/or get physical therapy to help manage the pain, and/or try letrozole and see if side effects improve. Otherwise, I can just monitor it and live with it. At this point, it's not so bad, so I figure I'll just put up with it.

Lastly, I mentioned the mild numbness and tingling in my right foot and leg that has been happening on and off since July. Sometimes it's just in the last 2 toes of my right foot, and it feels similar to the neuropathy in my first 3 fingers. Other times the numbness and tingling extend up my leg to some degree. Because the sensations are always concentrated in the same area, essentially in a line down the outside of my leg, my doctor thinks it's nerve-related, especially since I had a lot of similar nerve-related problems in the past. She suggested I add regular stretching to my daily routine, and see if that helps. 

After all the talking, I changed into a gown (top only) for a physical exam. Everything was fine!  

The doctor then stepped out and a medical assistant came in to do my EKG. She put one lead on each of my calves, one on each of my forearms, and 6 on my torso. She printed out the EKG on the spot and left it on the computer table for my doctor. I took a look and jotted down my QT/QTc numbers: 442/438 ms. Normal QT is 350-450 ms, and normal QTc is 360-460 ms, so it looks like I'm back in the normal range! 

When my oncologist returned to wrap up the appointment, she gave me the business card of the new social worker in the Cancer Center, in case I ever want to talk with her. Apparently, the amazing social worker who helped me through chemo retired.

Back home, I checked my lab results, and my LFTs and estradiol are both within the expected range! Yay! Maybe things are really finally settling down. 

8/8/22: I Checked My Insurance Claims Online

This list covers all my cancer-related medical costs through the end of June. Since we already met our insurance deductible for the coverage year, the only costs to us were the co-pays on my BSO surgery-related prescriptions.

Surprisingly, while compiling these numbers, I noticed right away that my Lupron injection in June cost a whole lot more than usual. The cost of Lupron has varied over the months and years, but generally has always been less than $1,000. Suddenly, this June, the price of one injection was over $5,000! I have no idea why.

Our insurance coverage year starts on July 1, which means our $4,000 deductible will be reset. So the next time I post a cost update, I'll have more out-of-pocket expenses to report.

4/29/22: GYN Surgeon Appointment: $608.00
5/10/22: Pelvic Ultrasound Radiologist: $839.00
5/10/22: Anastrozole (generic): $545.99
5/13/22: Lupron (Including Blood Work): $930.16
6/10/22: Medical Oncology NP & EKG Hospital + Lupron (Including Blood Work): $7,085.80
6/10/22: Medical Oncology NP Appointment: $326.00
6/10/22: Cardiologist EKG: $27.00
6/13/22: PCP Appointment + EKG: $385.00
6/14/22: COVID-19 Test: $375.00
6/14/22: Cardiologist & EKG Hospital: $227.00
6/14/22: Cardiologist Appointment: $481.00
6/14/22: Cardiologist EKG: $27.00
6/16/22: BSO Surgery Hospital: $1,627.88
6/16/22: BSO Sugery Surgeon: $2,167.00
6/16/22: BSO Surgery Anesthesiologist: $1,820.00
6/16/22: BSO Surgery Pathologist: $274.00
6/16/22: Prescription Ibuprofen: $15.49 (out-of-pocket co-pay: $2.57)
6/16/22: Prescription Docusate Sodium "Colace": $6.98 (not covered by insurance, out-of-pocket cost: $6.98)
6/16/22: Prescription Oxycodone (didn't use): $11.99 (out-of-pocket co-pay: $1.07)

Total cost to date: $460,800.23
With insurance, cost to me: $10,207.69

6/14/22: Covid Test + Cardiology Appointment

Today I found a good web page that explains QT prolongation. It's much better than the links in yesterday's post.

The short of it is, I don't require any more follow-up in cardiology, and I'm cleared for my surgery on Thursday! Phew. 

I started the day by driving to the surgery hospital for my covid test. 

I got there early, so while waiting for my appointment time, I called my oncology nurse and left a message about my cardiology appointment this afternoon. I was sure she could see the appointment in the online system, but she had asked me to call, and I found it reassuring to be in contact with someone who was basically tasked to help me manage this situation. 

The covid test took all of 10 seconds to administer. The nurse said the ordering physician will get the results. They'll call me if I'm positive, and probably won't call me if I'm negative. 

By the time I got home, I had just enough time to eat lunch before turning around and leaving for my cardiology appointment in the city. 

I gave myself what I thought was a ridiculous amount of extra time, but with a little traffic and a lot of time spent circling up and up the parking garage until I found open spaces, and then walking to the hospital, I got to the Cardiac Clinic just in time for my appointment.

When the medical assistant took my vitals, I was still feeling rushed from trying to arrive on time and stressed from driving in the city, not to mention anxious from just being there for a cardiac issue with my surgery on the line. She took both my blood pressure and my heart rate twice, giving me time to calm down in between. Then she did another EKG.

The cardiologist was all business, with a calm demeanor that probably serves him well in this field. He didn't tell me the QTc value, but he said it was "borderline" prolongated. Interestingly, in line with this article, he took the time to manually re-calculate the QTc. It was still borderline.

I find it noteworthy that in 3 EKGs, the leads on my legs were placed in 3 different places. On Friday (the EKG with prolonged QTc), the leads were placed low on my ankles. On Monday (the EKG with normal QTc), the leads were placed in the middle of my calves. Today (the EKG with borderline QTc), the leads were placed low on my calves, but above my ankles.

Anyway, the cardiologist asked me a bunch of questions about my own medical history and my family's. Do I ever pass out? Has anyone under 60 ever died suddenly and unexpectedly? He said he didn't think I have Long QT Syndrome, which is basically the only potential issue with a prolonged QTc. I just happen to have a slightly longer than normal QT interval.

I forgot to ask what would cause the prolonged QTc, since I didn't have it before. I was just 100% focused on whether or not I would be cleared for surgery. He said yes, I was fine to proceed with surgery, and no additional follow-up is needed either before or after the surgery, but I should schedule an appointment if anything changes, like if I start passing out.

I felt so relieved walking out of the clinic! I got back to my car and called the oncology nurse right away. She said she would contact the GYN surgeon's office and let them know to check my electronic medical record for confirmation of medical clearance. I hope that's that. Tomorrow the hospital is supposed to call, and I might call the GYN's office just to make sure everything's in order.

Once I got home, I checked the online patient portal. I'm glad I have access to my medical notes, because I learned a couple things that were not explicitly discussed during the appointment.

First, I hadn't asked the doctor what exactly my QTc was today, but the report says it was 461 ms, right in the borderline zone according to the QT prolongation article.

Second, the note said that the anastrozole and Lupron may be contributing factors. The cardiologist wrote, "Given her concurrent hormone suppression therapy, would be prudent to continue monitoring QT interval moving forward."

This was my first time hearing about any connection between my hormone therapy and the QT interval. I didn't find any connections when looking up Long QT Syndrome yesterday, but I did find some hits by searching for just "QT" and "Lupron" together. Turns out, Lupron can affect the electerical activity of your heart! Not only that, but QT prolongation is a known less common side effect of Lupron! The QT prolongation article also says that hormonal imbalances could be a cause. 

It seems to me that I am somehow prone to getting the less common but serious side effects of medications. First I got non-alcoholic fatty liver disease from Tamoxifen, now I've got QT prolongation presumably from Lupron. I'm reminded of what my original medical oncologist said, about how Asian cancer patients tend to respond differently to cancer treatment, perhaps in part because Asians are not well-represented in all the clinical trials where side effects are investigated. 

I'm wondering if I should be disappointed that my oncology team never warned me about these risks specifically. I guess I can't expect them to list every single side effect, and I don't think knowing about these less common outcomes would have affected my decision-making; since they are not common, I would have figured I'd be unlikely to get them, even if I knew about them. 

It also occurs to me, should I be upset that they didn't readily connect the dots between prolonged QTc and Lupron? Maybe they did, but the focus right now was figuring out if a prolonged QTc would affect my surgery. And since my surgery means discontinuing Lupron anyway, maybe it's moot. Looking ahead, I may try to ask for an EKG at my next oncology appointment, to see if the QTc returns to normal after stopping Lupron. 

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!!!

6/10/22: Last Lupron + Medical Oncology NP Appointment + Phone Calls

I got my blood drawn. 

A super friendly new-to-me medical assistant took my vitals, then brought me to an exam room for my EKG. I changed into a gown (top only), and the medical assistant put a bunch of electrodes on my arms, ankles, and torso. I had almost forgotten that getting an EKG means more time spent attaching and detaching the electrodes and changing my clothes than actually getting recorded. 

Next I saw my medical oncology NP. Usually I have a long list of concerns, but today it just felt like we were touching base on a few known issues. No change in my side effects (slight neuropathy in first 3 fingers on both hands, tightness in joints), and they aren't so bad that they disrupt my activities of daily living. Actually, I've noticed I haven't had as many hot flashes lately, but I forgot to mention that.

My NP was very sympathetic about my upcoming surgery, but I assured her that I understand and accept the rationale, and I'm okay with it. It actually felt a little comforting to know that she was treating the surgery like a Big Deal, because I do think both my usual GYN and the GYN surgeon gave the impression that the surgery is No Big Deal. In a way, that's a good thing, because it implies that to them, the surgery is commonplace and nothing to worry about. Still, surgery is surgery, and I'm getting organs removed from my body!

My NP reiterated what my GYN surgeon has already said, which is that after the surgery, I should not expect to experience many new symptoms of menopause since my body has already gone through the effects of losing estrogen. 

During this appointment, some of my blood work results came in, and my NP was super excited to show me that my ALT and AST (the liver function tests) went down again! Not only that, but the AST actually fell to within normal limits!! Yay!! I've been making a real effort to exercise more, drink more water, drink less alcohol, eat better, and stay active after eating, but given the steady rate of decline of the LFTs, I'm guessing none of that really matters as much as the simple fact that I stopped taking Tamoxifen. But it's not all for nothing, because my NP commented that I look like I lost weight! I did lose something like 3-5 pounds, not enough to really be noticeable, but it's something. 

At the end of the appointment I asked if I was "all set" with that "medical clearance" the hospital wanted, but my NP didn't seem to know what that was all about. She wondered aloud if I should get a chest X-ray, and then decided it wasn't necessary at my age. I left feeling a bit uneasy about whether or not I was "all set" for surgery next week. 

I almost forgot that I still had to get my Lupron shot after this appointment. In a way it felt a little bittersweet seeing my treatment nurse for probably the last time. I mentioned that next week's surgery would make this my last injection appointment, and the nurse expressed encouragement and wished me luck. I was feeling a bit emotional about never seeing this nurse again, but I also felt silly because the nurse was pretty matter-of-fact about it, so I just kept the sentimentality to myself and cheerfully told her I've enjoyed talking with her at my appointments. 

On my way out, I scheduled my next appointment with my oncologist. It was supposed to be in 3 months but the earliest available was in 5 months. 

Back at home, I was still feeling unsettled regarding that "medical clearance", so I made some phone calls. First I called the hospital's Pre-Admissions Testing. They said if I need medical clearance, it's something I get from my PCP. I explained that the pre-operative phone call person said it could go through my oncologist, who I was already scheduled to see, but when I asked my oncology NP today, they didn't seem to know what it was all about. So then they said I should call the office of the doctor performing the surgery to find out if I'm "all set" or not. So I called the GYN surgeon's office, and the surgery coordinator did not know what kind of "medical clearance" was needed either! She said she didn't know if I was "all set" or not, but she'd put in a message with the doctor and get back to me next week. I expressed concern that this all might not get resolved in time for my surgery, and the surgery coordinator said, "We'll get to the bottom of this. Don't worry." So okay. I guess I won't worry! (Of course I will, but I will tell myself not to.)

Oh, one last thing. My blood work came back showing my estradiol as <5, which is where it should be. My NP said maybe they'd check it one more time after surgery, just for fun, but once the ovaries are out, the whole point is that we won't have to worry about the estradiol anymore. 

6/6/22: The Cancer Center Called Me

The friendly medical assistant / receptionist who always greets me warmly called me today. She's actually the person I left a message with regarding needing "medical clearance" for my surgery. She wanted to know if I need a new EKG for the "medical clearance", or if my most recent one would suffice. I had no idea!

I realized I have no point person at the hospital where I'll be getting my surgery. I called their main number, explained my situation to the receptionist, and she connected me to the Pre-Admissions Testing person. That person listened patiently and then explained that an EKG performed within the last year is standard procedure when anesthesia will be used in surgery. So, I guess I need another one.

I called the Cancer Center back, and the same medical assistant / receptionist said she'll have the doctor put in an order for an EKG, which can be done at my already-scheduled appointment with the medical oncology NP. I was just glad I don't have to go in for a separate visit.

I found all this a little interesting because I'm pretty sure I did not get an EKG before my double mastectomy surgery. Turns out, there's wide variability in regards to which tests are performed pre-surgery, and many of them may be unnecessary. Since my double mastectomy was performed at a different hospital, I'll just assume the different hospitals have different procedures.

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.

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.