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

6/5/25: Medical Oncology NP Appointment

Today's appointment was a full year after my last oncology appointment, and I have to say, it felt different. Cancer somehow seemed less close, like I can now imagine being in a mental place where cancer might feel like something "in the past". It's not something I can ever really forget - my missing breasts are a constant reminder - but maybe it could be more like "something I went through" rather than "something I'm going through".

Anyway, my NP greeted me with a big hug. She asked all about how my kids are doing, and what our summer plans are. It felt almost like catching up with an old friend, except it was all one-sided about me, though she does sometimes drop bits and pieces of information about herself in the course of our conversations. (For example, I know our families enjoy the same types of board games.) I expect to be cut loose from oncology appointments once I'm finished with 10 years of hormone therapy, and I anticipate feeling kind of sad about "losing" this semi-personal relationship. 

Of course we did get around to actual medical stuff. She brought up my last bone density test results. Yes, the numbers are getting worse, but she spoke positively about how they haven't crossed the osteoporosis threshold yet. She recommended I increase my weight-bearing exercise by wearing a weighted vest (like 8-12 pounds) when walking, which her own doctor recommended for her as well.

Other than that, I basically reported no change in my hormone therapy / menopause side effects, as described in my post for last year's appointment. 

My next appointment is in another year, and it will be with my oncologist. It's typical to alternate appointments between the doctor and NP, and I have no idea why they kept scheduling me with the NP in recent years, but I didn't mind since I like and trust her just fine. I haven't seen my oncologist since 2022, so it'll be almost 4 years by the time I do see her! I wonder if I'll be able to tell if she really remembers me personally, or if she'll just be going off my medical file.

9/13/24: Cost Update

Our high-deductible health plan runs from July to June, which means our deductible gets re-set on July 1. So far, it seems like I (along with the rest of my family) have enough medical appointments that we reach our deductible late in the coverage year, which means finally in June some appointments are 100% covered by insurance! And then we start all over again, paying a lot for appointments starting in July.

Here are the latest numbers, including the amount billed (which I add to the "total cost") and the amount I had to pay after insurance processed the claim (which I add to the "cost to me").

10/23/23: Anastrozole (generic): $545.99 (Covered by insurance)
1/11/24: BreastCare NP Appointment: $221.00 (I paid $195.29)
2/1/24: Anastrozole (generic): $545.99 (Covered by insurance)
4/27/24: Anastrozole (generic): $545.99 (Covered by insurance)
6/4/24: Medical Oncology NP Appointment: $221.00 (Covered by insurance)
6/4/24: Medical Oncology NP Hospital: $134.00 (Covered by insurance)
6/25/24: Cardiologist Appointment: $326.00 (Covered by insurance)
6/25/24: Cardiologist Hospital + EKG: $586.36 (Covered by insurance)
7/26/24: Anastrozole (generic): $545.99 (Covered by insurance)
8/14/24: Bone Density Radiologist: $44.00 (I paid $24.30)
8/14/24: Bone Density Hospital: $764.00 (I paid $304.90)
8/21/24: Echocardiogram Cardiologist: $230.00 (I paid $175.39)
8/21/24: Echocardiogram Hospital: $1,494.00 (I paid $1,348.20)

Total cost to date: $477,691.38
With insurance, cost to me: $16,908.63

6/4/24: Medical Oncology NP Appointment

My last appointment was about a year ago. Thankfully, there's no new medical issue to report. Since being diagnosed, the longest stretch I've had without any new problems popping up is about 1 year. I'm hoping to set a new record now. (Knock on wood.)

My appointments used to alternate between my oncologist and this medical oncology NP, but today's appointment with my NP was the 2nd time in a row seeing her, and my next appointment - which will be in 1 year - is also scheduled with my NP. We didn't discuss it explicitly, but I think now that my health is relatively stable, my oncologist's time is better spent with patients who are in active treatment. 

This will actually be the first time I'll be going a full year between appointments with a breast or cancer specialist. My last oncology appointment was a year ago, but I saw my Breast Center NP about 6 months ago. That was my last scheduled follow-up with them, so there won't be a 6-month check-in this time. But, my NP was very kind and clear that I can always call for an appointment at any time.

I really like my NP. She spent over 30 minutes with me, and for much of that time we chatted about kids, vacations, the end of the school year, etc. A lot of the conversation was in reference to my increased anxiety, which could be from the anastrozole (hormone therapy pill), surgical menopause after having my ovaries out, or even situational (June is always a busy month, plus my oldest child is graduating high school). I told her how I know what being anxiety-free feels like because that's how I feel when we're on vacation! And I really appreciated that she said, with all seriousness and without any condescension, "Life really is hard." And that's just it. Life makes a lot of demands on us, and it always will. She also tried to gauge the severity of my anxiety by asking me if I get paralyzed by it, which I don't. Sometimes it slows me down because I'll fret and fuss over something for a while, but I am always able to eventually move on and get things done. 

For the record, I still have a bunch of hormone therapy side effects, which haven't changed much. I do get fewer hot flashes these days, though when I do get them, they're still accompanied by anxiety. I wake up every morning with stiff fingers; I can't even close my hands into fists until I pump my fingers and exercise them for a while. The first three fingers on each hand are still very faintly numb, but I only notice it when I tap my thumb against the next two fingers. I don't sleep well at all; I have trouble falling asleep unless I go to bed very tired, I get up at least 1-2 times a night to pee or because I'm feeling warm, and then I frequently wake up too early feeling anxious. 

Oh, one last thing. I'm supposed to get another bone density test, which I've been getting every 2 years, to check on the state of my osteopenia.

12/17/23: Cost Update

Our insurance coverage year starts on July 1, re-setting our deductible, which is why we had to pay so much for the August appointments.

As usual, I'm listing here the amount billed, which gets added into the total cost, and the amount we paid, with insurance. 

1/13/23: GYN Appointment: $315.00 (Covered by insurance) 
1/30/23: Anastrozole (generic): $545.99 (Covered by insurance)
3/28/23: Blood Work for Hepatology Appointment: $227.63 (I paid $44.68)
4/4/23: Hepatologist Appointment: $326.00 (I paid $326.00)   
4/4/23: Hepatologist Hospital: $109.00 (I paid $109.00)   
4/29/23: Anastrozole (generic): $545.99 (Covered by insurance)
6/1/23: Medical Oncology NP Appointment: $326.00 (I paid $278.70)   
6/1/23:  Medical Oncology NP Hospital + EKG: $235.00 (I paid $147.02)   
6/26/23: Cardiologist Appointment: $508.00 (I paid $86.04)   
6/26/23: Cardiologist Hospital + EKG: $283.25 (Covered by insurance)
7/27/23: Anastrozole (generic): $545.99 (Covered by insurance)
8/8/23: Stress Test Cardiologist: $347.00 (I paid $262.14)   
8/8/23: Stress Test Hospital: $3,147.00 (I paid $1,956.98)

Total cost to date: $471,487.06
With insurance, cost to me: $14,860.55

6/9/23: My Medical Oncology NP Called Me

She conferred with my previous cardio-oncologist, who was able to look at my EKG results and determine that there's "nothing urgent". But, they still think it's a good idea for me to be seen by a cardiologist, so I should expect a phone call to schedule an appointment.

As it turns out, though, my original cardio-oncologist, who I liked a lot, now only sees patients in the suburban satellite office one day a month; the rest of the time she is in the city. Since I don't like driving into the city, I opted to see a new cardiologist who is now available at the same location as my Cancer Center. (This location did not used to have any cardiologists on site, otherwise I would have gone to them from the start.)

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. 

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

6/27/22: (11 Days Post-BSO) My Medical Oncology NP Messaged Me

She sent me a message in the online patient portal, just asking how things are going.

I know she can see all my medical notes online, but I sent a response assuming she didn't read any of it. Basically I just gave a very brief summary of my appointment with the GYN surgeon, mentioning the bruises, the swelling, and the scar tissue. 

I'm still taking ibuprofen and applying a cold compress to the left incision. The swelling is getting better, and the big bruise has improved considerably. (It's mostly light purple, green, and yellow now.) The scar tissue bump feels the same, and so far no change to the other bruise. I haven't needed Colace for a couple days now. 

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. 

6/3/22: Pre-Operative Phone Call

Mostly this phone call was about reviewing my medical history. The nurse asked me a bunch of yes/no questions about my health.

She gave me a few instructions on where to report and what to expect on the day of surgery. She also said I should expect another phone call the day before surgery with final instructions, like food and drink restrictions. 

Disappointingly, she said no outside masks are allowed in the hospital, so when I check in, I'll be given a new surgical mask. The fact that I will be required to swap out my high-quality KF94 mask for a lower quality surgical mask is unfortunate but not surprising, as I have heard this to be the policy in many, many hospitals. Maybe I should feel lucky that all my other appointments up until now have allowed me to wear a KF94.

Interestingly, she asked if I'll be seeing my doctor before the surgery, because apparently I need "medical clearance". I don't have a PCP appointment scheduled, but I do happen to have a regularly scheduled appointment with my medical oncology NP. She told me to call the NP's office and let them know I'll need "medical clearance" from this appointment. I have no idea what this "medical clearance" is but I just followed instructions and called the Cancer Center and left a message.

Finally, I'm not supposed to take any vitamins for 7 days before surgery. This is not a big deal at all, but I just didn't realize taking vitamins would matter.

6/2/22: I Checked My Insurance Claims Online

This update has more line items than usual because I kept forgetting to make this post earlier. I'm particularly peeved that there is a "Hospital" charge for my 4/26/22 Medical Oncology NP Phone Appointment, for which I did not even step foot into the hospital.

As usual, these costs are added into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year.

1/6/22: BreastCare NP Appointment: $221.00
1/12/22: OB/GYN Appointment: $315.00
1/12/22: OB/GYN Hospital: $392.00
1/21/22: Lupron (Including Blood Work): $1,858.16
2/2/22: Liver Ultrasound Radiologist: $129.00
2/2/22: Liver Ultrasound Hospital: $557.00
2/8/22: Hepatologist Appointment: $481.00
2/8/22: Hepatologist Hospital (Including Blood Work): $1,131.00
2/18/22: Lupron (Including Blood Work): $930.16
2/18/22: Anastrozole (generic): $545.99
3/10/22: Bone Density Radiologist: $44.00
3/10/22: Bone Density Hospital: $674.00
3/17/22: FibroScan Radiologist: $37.00
3/17/22: FibroScan Hospital: $509.00
3/18/22: Lupron (Including Blood Work): $930.16
4/15/22: Lupron (Including Blood Work): $930.16
4/26/22: Medical Oncology NP Phone Appointment: $260.00
4/26/22: Medical Oncology NP Hospital: $105.00

Total cost to date: $443,019.94
With insurance, cost to me: $10,197.07

5/30/22: My Medical Oncology NP Messaged Me

Actually, I messaged her first.

I sent her a message on Friday via the online patient portal because I had some spotting. Normally, this unexpected spotting would be somewhat alarming, and the last time this happened is when I went down the Tamoxifen detour. 

None of us has a crystal ball, so who could have known that the Tamoxifen would end up causing non-alcoholic fatty liver disease. Still, looking back at my blog entries, it's clear I didn't want an oophorectomy due to the risks, so Tamoxifen absolutely made sense at the time. 

I guess all the risks still exist, but I don't really have a choice now.

Anyway, as I mentioned to my NP in my message, I figured the spotting wasn't too alarming this time because we already know the Lupron isn't fully working and I'm already scheduled for an oophorectomy, but I decided to report the symptom anyway since I haven't actually had the surgery yet. 

So today the NP responded, expressed sympathy for ongoing complications, and said she'd let my OB/GYN surgeon know.

3/29/22: The Cancer Center Called Me

It felt kind of random. A person I didn't recognize said my usual medical oncology NP had asked her to call me to let me know about my blood work results (which I already saw online). She said my estradiol number is low, as expected, and that my LFTs (liver function tests) are "bouncing around" and were sent to my hepatologist. The blood work was done 11 days ago, and I didn't expect any follow-up, so I guess it's just nice to know that someone is still checking up on me. 

Although, she did not say anything about my bone density test results, and I did expect a follow-up for that. I had forgotten all about it and didn't think of it myself until after the phone call ended, otherwise I would have mentioned it. I guess there's not much to say about it anyway, since the report said "statistically nonsignificant change" from last time. 

Meanwhile, I still haven't heard from my hepatologist about my FibroScan results. I'm not really worried because I feel like I've gotten enough information online, though it would be nice to know his thoughts on what "severe steatosis" means for me.

2/22/22: A Medical Oncology NP Called Me + Phone Calls

It wasn't my usual NP who called. She said she was calling on behalf of my usual NP, so I guess my usual NP just isn't in today, or has other things to do.

She said my lab work showed my estradiol is <5, which is where it needs to be to assume the Lupron is working as expected. So, she gave me the green light to start anastrozole today.

She also said that my usual NP wants to follow up with me in 2 months to see how I am doing on the anastrozole, so I can report on any side effects. She said they already scheduled a phone appointment in April for me.

While I had her on the phone, I mentioned that the hepatologist said I should get a FibroScan, but still no one has called me to schedule it. She looked through my medical records and saw no evidence of any follow-through, so she recommended I give the hepatologist office a call.

I called the Liver Center and spoke with a very friendly person who seemed surprised that no one had called me yet. She took a message and said someone would call me back.

Here, again, is another example of having to be my own best advocate. Within half an hour, I got a call to schedule the FibroScan. We set the location, date, and time, and the scheduler sounded like she was wrapping up, about to end the phone call, but I interjected to say I have one more question. Are there any special instructions? Do I just show up for the scan? Turns out, I need to fast for 3 hours prior. Good thing I asked! 

Meanwhile, I checked the online patient portal to see the exact date and time of my April phone appointment with my medical oncology NP. I happened to have a conflict, so I had to call the Cancer Center to re-schedule that. 

Now I think I finally have all my ducks in a row. Everything that needs to be scheduled has been scheduled.

2/15/22: My Medical Oncology NP Called Me

I guess I was wrong! I thought I wouldn't hear from anyone until after getting a FibroScan, but my medical oncology NP called me this morning.

Lots to summarize.

My hepatologist and my oncologist conferred. Test results so far seem to indicate that the Tamoxifen is causing the liver problems, so they decided I should stop Tamoxifen immediately.

Originally, my hormone therapy was Lupron (a monthly shot putting me in medically-induced menopause) and exemestane (an aromatase inhibitor (AI) for postmenopausal women). After about a year, for unknown reasons, my estradiol (estrogen) number increased. Apparently, the Lupron was not sufficiently suppressing my ovaries, which means I couldn't be considered postmenopausal. I switched from exemestane to Tamoxifen, which can be used pre-menopause, while still continuing with Lupron. 

Because my estradiol number eventually fell back into the postmenopausal range, my oncologist thinks I can try taking an AI again, as long as they keep a close eye on that estradiol. Since I already go to the Cancer Center monthly for my Lupron shots, they will also do monthly blood draws for a while to check my estradiol number. 

Since I had some disruptive side effects from exemestane, my oncologist wants me to try anastrozole, a different AI. My NP described it like "Coke. vs. Pepsi", but I guess I can also think of it like acetaminophen vs. ibuprofen for pain relief. It's possible that I may experience fewer or less severe side effects with anastrozole. From what I can gather, exemestane and anastrozole are comparable in terms of efficacy, and "the main deciding factor between aromatase inhibitors may be the tolerability of the drugs regarding potential side effects."

My NP said to stop the Tamoxifen today, but don't start the anastrozole until next week, to kind of give my body time to reset between medications. 

Another consideration is that while Tamoxifen can actually slow down bone loss in postmenopausal women, AIs can reduce bone density. So, they will check my bone density about every 2 years while taking an AI. It looks like I had a bone density test just after I started exemestane, so it's coincidentally been about 2 years since it was last checked. 

My NP said I should expect a call from Radiology to schedule the bone density test, and if I don't hear from them by Friday, I should call them. I still haven't been contacted about scheduling the FibroScan, and I wonder if it's the same scheduler. 

She said she'd check with the hepatologist, and they might want to include liver function tests in my monthly blood draws. I hope they do, I'm curious to see if my liver will improve after stopping Tamoxifen. 

2/4/22: My Medical Oncology NP Called Me

She called to review my abdominal ultrasound results. This time I didn't hide the fact that I had already seen the report online, which stated very clearly the results were "consistent with steatosis." It was easy enough to Google "steatosis" to see that it's the medical term for fatty liver disease. 

This time, contrary to what she said in the last phone call, she brought up the Tamoxifen connection herself. Sounds like my oncologist knew about the association, and maybe this was just the first time my NP was seeing it. 

Anyway, they are referring me to a hepatologist. I'm supposed to wait for them to call me to schedule the appointment, but given what happened last time, I specifically asked for a time frame, and the NP said if I don't hear from them by next Wednesday, I should let her know rather than call the hepatology department myself. 

I appreciate that she spent some time talking with me about what I should discuss with the hepatologist, so I could be sure to ask the right questions. I'll definitely want to ask about whether or not the benefits of taking Tamoxifen outweigh the potential problems of having fatty liver disease. Should I stop Tamoxifen? And even if I did, would my liver improve, or just not get any worse? I don't want to decrease my chances of cancer recurrence with Tamoxifen only to have fatty liver disease shorten my lifespan.

My NP mentioned that if the hepatologist advises stopping Tamoxifen, then we'd have to look into other hormone therapy options, which includes maybe giving exemestane another try. I switched from exemestane to Tamoxifen because my estradiol numbers were too high, but my last two blood tests (in June and December 2021) had estradiol in the desired "<5" range, so maybe it's still an option.

Actually, the NP clarified that the hepatologist alone wouldn't be able to make a judgment call regarding Tamoxifen, and that the hepatologist and my oncologist will probably have to discuss it together. I like that all my specialists are in the same hospital network, so they really do feel like a team, working together and having access to each other's notes, everyone seeing the same "big picture". 

1/25/22: My Medical Oncology NP Called Me (I Checked My Lab Results Online)

I actually already checked my lab results online on Saturday, and I saw that there were a handful of abnormal results. I did some Googling to put some context around them, and felt a bit alarmed. I decided not to blog about it until after I had a chance to talk everything over with my oncologist or oncology NP. 

This whole exercise really showed why patients like me should not access their test results online without first discussing results with the doctor! Seeing my results with no context did make me worry. On the other hand, though, I am glad I did a little research in advance, so I wasn't caught completely off guard, and had time to prepare some questions... I really don't know how a happy medium could be achieved.

So, this is what I discovered on my own, on Saturday. First, the same liver enzymes (ALT and AST) are still just a little out of range. This time, I made a point to not drink and not take Tylenol for at least 4 days prior to getting my blood drawn, so those factors could be ruled out. 

High ALT and AST can indicate fatty liver disease. Turns out, being Asian and post-menopausal are risk factors. High blood pressure and high cholesterol are also risk factors, and though I haven't been diagnosed with either condition, some test results have put me on the high end for both. And, importantly, Tamoxifen also increases my risk.

My folate (also known as folic acid) and ferritin numbers also came back high. I couldn't find much of a correlation between these numbers and Tamoxifen, but I did find some academic articles about iron and breast cancer and ferritin and breast cancer. I didn't really understand the implications of these articles, but they made me feel uneasy. Luckily, I also found some articles linking high ferritin with non-alcoholic fatty liver disease. Not that having fatty liver disease would be good, but it's better than having cancer again. 

There was one other result, my Hepatitis A antibody test, which came back positive. I was initially confused and had no idea how I could have gotten Hepatitis A, but then I saw that the test can also indicate if someone is immune from a prior vaccination. Thanks to my obsessive record-keeping, I know that I got 1st and 2nd doses of the Hepatitis A vaccine in 2012, motivated by a trip to Mexico. 

When my medical oncology NP called today, I was already armed with all of the above. Still, I pretended I hadn't checked my results yet, so as not to influence what she would say. 

The NP said my oncologist is "not worried about a cancer problem." (Phew!) 

She thinks I may have fatty liver disease, and is recommending an ultrasound. If the ultrasound shows fatty liver, then I will be referred to a liver doctor, which I had to Google to find out is called a hepatologist. My NP was careful to reassure me that fatty liver is a condition that you can just live with. 

If the ultrasound does not show fatty liver, then they will do additional tests to see if I have hemochromatosis, a condition that causes the body to store too much iron. If I have that, it would be managed in the Cancer Center, which includes hematology, but I would still be referred to a hepatologist for overall liver care. 

Sounds like either way, I'm going to be seeing a hepatologist. I have to say, the prospect of having yet another specialist is discouraging, but I guess I should just be thankful it's not a cancer recurrence. 

For now, I am going to consider my liver issue as part of this cancer blog. My research clearly said Tamoxifen is a risk factor for fatty liver, but when I asked my NP about it, she said they have a lot of patients on Tamoxifen in the Cancer Center, but they do not see a lot of cases of fatty liver. She thinks it's just something that would have developed anyway, which may be possible given my other risk factors. Still, I'm not ruling it out, and I'll plan to ask the hepatologist about it.

A couple other things worth noting. First, my NP did not mention my very high ferritin number. When I asked about that, she said it's just another indication of something going on with my liver, and could be consistent with either fatty liver or hemochromatosis. 

The other thing is, she said the Hepatitis A result showed a past infection, but nothing current. I asked if that test might be positive because I've been vaccinated for Hepatitis A. She said yes, but was surprised because apparently adults being vaccinated for Hepatitis A isn't common, and she even thought I might have been confusing it with Hepatitis B. Good thing I had already confirmed my vaccination status!