6/15/26: Medical Oncology Appointment

Today I had my annual oncology follow-up. My appointments are supposed to alternate between the medical oncologist and medical oncology NP, but for some reason, I was scheduled with the NP for 3 years in a row, so I hadn't seen my oncologist since 2022!

I first got a blood draw for a full panel of tests. I was a little surprised because I couldn't even remember the last time I had my blood drawn for an oncology appointment. At home later, I checked my records, and it was back in 2022 when I last saw my oncologist! Anyway, today I had to go to the phlebotomy department in the main part of the hospital; since my last blood draw, the small dedicated phlebotomy lab in the cancer center is now only used for limited purposes.

The very nice medical assistant who took my vitals gave me another surprise when she said my height is 5' 5". I thought I was 5' 5.5"! Again, I checked my records at home, and last year I was 5' 5.25". At the time, I probably chalked it up to a slight mismeasurement, but I can't ignore two years of declining measurements in a row. Yikes. Surely bone loss is to blame; more on that later.

The medical assistant also told me the doctor was running behind schedule, and indeed by the time I was shown to an exam room, it was 50 minutes past my scheduled appointment time. Then I had to wait at least another 15 minutes for my oncologist. But I didn't mind, I didn't have any other place to be. The way I see it, my appointments are relatively routine now, and other cancer patients probably need her attention a lot more than I do. Plus, I like the idea of a doctor spending as much time as necessary with a patient. I used the time to start this blog post, check email, etc.

While waiting in the exam room, with the door open, my medical oncology NP walked by and popped in to say hello. It was very quick but also very friendly, just enough time for her to ask about my kids and for me to tell her about my youngest graduating high school and heading off to college. When I finally saw my doctor, she was so pleasant and kind and spent maybe a good 30 minutes with me. I didn't feel rushed at all.

I was surprised - again! - when the doctor asked about my eye appointments; I didn't realize she would have access to the fact that I recently got an eye exam and was referred to an ophthalmologist for an "enlarged optic nerve". I super appreciate when all my doctors in the same giant hospital network can see each other's notes, but I know the ophthalmologist is not in that network. Maybe my oncologist just saw the referral from my PCP, who is in the same network? Who knows. However she got to see it, I do like the convenience and comprehensiveness of all my doctors being able to see my medical activity across specialties.

We talked about my various symptoms and side effects from menopause and hormone therapy, e.g., joint stiffness, neuropathy in fingers and toes, hot flashes (much reduced from initial frequency), vaginal dryness, and increased anxiety. I told her about the new neuropathy in my left toe, though at this point, I've pretty much just accepted that all the discomforts are part and parcel of having had cancer.   

My oncologist confirmed that it'd be difficult to separate which symptoms are from menopause, and which might be side effects of taking anastrozole, the difference being that side effects could potentially improve when I stop hormone therapy. (I've got 4 more years to go, for a total of 10 years of hormone therapy.) Anastrozole is an aromatase inhibitor, and she said there is one more medication in the same family that I could try, called letrozole. I previously took exemestane, and got switched to anastrozole to see if I'd have fewer side effects on it, which I did. My doctor said I could try switching to letrozole, if I want, just to see if side effects are even better, but I guess I sort of feel like I'm in a steady routine now, so I'm loath to rock the boat by switching medications. It's good to know it's an option though. 

As usual, I had a physical exam as well, which went fine.  

Finally, I am due for a bone density test (because aromatase inhibitors cause bone loss), so will call tomorrow to schedule that. My oncologist said to try to get an appointment before my next PCP appointment, so my PCP can see the results and talk with me about whether or not to start treating my osteopenia (which hopefully has not progressed to osteoporosis).

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

8/15/24: Bone Density Test Results

I'm supposed to get a bone density test every 2 years while on anastrozole, which puts me at risk for osteoporosis.

Previous tests showed that I do have osteopenia, and this year's results are no different.

I had the imaging done yesterday and got the results online today. My T-scores this year are:

• Lumbar spine: -1.5 (down from -0.5)
• Right proximal femur: -1.6 (down from -0.9)
• Left proximal femur: -1.8 (down from -1.2)
  

The report describes the "change from previous" as "-8.8%, statistically significant change", but at least it's not in the osteoporosis range yet.

For the record, I do take both calcium and vitamin D to help prevent bone loss. I wonder if maybe my numbers would be even worse if I weren't taking these supplements.

3/11/22: Bone Density Test Results

I checked the online patient portal and got my bone density test results. 

These are my T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.9
• Left proximal femur: -1.2

I'm still in the osteopenia range. Compared to my previous test results, it looks like my right proximal femur got a little worse.

The report describes the "change from previous" as "-2.0%, statistically nonsignificant change", which makes it sound not too concerning.

3/10/22: Bone Density Test

A couple days ago, I got an automated phone call with covid-19 screening questions. Checking in for today's appointment, though, I think it was the first time since this pandemic began that I was not asked any screening questions in person. To be honest, it made me feel uneasy; covid protections are being rolled back everywhere (because the CDC moved the goalposts), yet my county still has high community transmission. 

I did not feel particularly comfortable in the waiting area, where there were 4-6 other people in the room at any given time. Thankfully, the hospital is still requiring masks, but there was no distancing or capacity limit, and no visible indications of good ventilation or air purification. 

I arrived 15 minutes early, as instructed, and filled out a questionnaire about my medical history as it relates to bone health. Then I waited another 15 minutes to be called.

My technician was a friendly guy. He had me change into a gown, but said I only needed to take off my jeans; I could wear my shirt under the gown. I laid down flat on my back on the table. The technician positioned my legs, and the machine scanned my body. Then he re-positioned my legs, and the machine scanned my body again. The whole procedure took less than 10 minutes. 

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. 

3/20/20: I Checked My Insurance Claims Online

As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.

2/7/20: Maintenance Herceptin #3 (Including Blood Work, Physical Therapy #18): $16,472.32
2/10/20: Medical Oncologist Appointment: $260
2/10/20: Medical Oncologist Hospital: $84
2/21/20: Lupron (Including Physical Therapy #19): $978.16
2/28/20: Maintenance Herceptin #4 (Including Blood Work): $15,840.75
3/4/20: Medical Oncologist Appointment: $260
3/4/20: Medical Oncologist Hospital: $147
3/9/20: Bone Density Test Hospital: $674
3/9/20: Bone Density Test Radiologist: $44

Total cost to date: $241,393.11
With insurance, cost to me: $4,254.63

3/9/20: Bone Density Test

My medical oncologist ordered a baseline bone density test because both Lupron and exemestane are reducing my estrogen levels - actually, together, the goal is to eliminate estrogen completely - and that puts me at risk for osteoporosis.

Because of the coronavirus, when I checked in, I got asked whether or not I am having respiratory symptoms and also whether or not I've travelled anywhere within the last 14 days. These questions actually show an evolution from a few weeks ago, when I was asked only whether or not I'd travelled to China in the last 14 days.

Anyway, I filled out a questionnaire about my bone health, and was instructed to change into a gown. I laid down on a table, and the imaging machine above me moved up and down my body making scans. The whole procedure was a lot shorter than I expected, I think it took like 10 minutes.

When I got home, I went for a nice long walk with my neighbor. By the time I got back, my doctor's office had already called with the results. I have osteopenia! I got 3 T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.7
• Left proximal femur: -1.2

Only the -1.2 number falls within the osteopenia range, but the nurse who called me said it's enough to consider my overall results to be osteopenia. She said my doctor is prescribing 1200 mg of calcium daily and 1000 IU of vitamin D daily.

My old oncologist already had me taking 2000 IU of vitamin D, so I figure I'll stick with that. The calcium supplement I've been taking is 600 mg, so I'll just take 2 of those from now on.

I'm already trying to walk at least 30 minutes a day, 5 days a week, for breast cancer recurrence prevention. Apparently, walking counts as a weight-bearing exercise that is beneficial to bones, so that makes me doubly motivated to keep it up.