7/2/26: Cardiology Blood Test Result

My lipoprotein (a) test came back normal. Yay! That's one less thing to worry about.

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.

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

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

3/28/23: Blood Draw and LFT Results

I have definitely crossed some kind of inflection point in my cancer journey. Up until now, I had gotten so used to frequent medical treatment that appointments felt typical and routine. Today, for the first time in a long time, I went to get my blood drawn in advance of a hepatology appointment next week, and I felt like it was an aberration from my schedule, an inconvenience. Even though my actual feelings were kind of negative, I figure it's a positive development overall, a sign that cancer is not such a central fixture in my day-to-day life anymore. 

Anyway, I looked up my results online, and my LFTs (liver function tests) are essentially back to my pre-Tamoxifen values. Yay! (Numbers in red were problematically out of range.) 

DATE       ALT  AST  AROMATASE INHIBITOR
03/28/23   19   20   Anastrozole
11/10/22   23   22   Anastrozole
08/16/22   26   22   Anastrozole
08/08/22   26   26   Anastrozole
06/10/22   46   34   Anastrozole
05/13/22   57   41   Anastrozole
04/15/22   78   56   Anastrozole
03/18/22   86   63   Anastrozole
02/18/22   79   65   Tamoxifen
02/08/22   74   51   Tamoxifen
01/21/22   62   53   Tamoxifen
12/23/21   65   49   Tamoxifen
06/10/21   25   22   Tamoxifen
12/23/20   18   18   Exemestane
07/24/20   19   19   Exemestane

Hopefully this means next week's hepatology appointment will be my last.

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. 

8/17/22: Blood Draw and LFT Results

I was originally supposed to have an in-person appointment with my hepatologist this week, but the doctor's office called last week and asked if I wanted to change it to a telehealth appointment next week (presumably due to the current Delta-level plateau in COVID-19 cases in my state). From what I remember of my first hepatology appointment, an actual physical exam didn't seem critical, so I agreed to a phone appointment. (They also offered a video option, but I'm more comfortable on the phone.)

The office said the doctor would put in a lab order, so I should get my blood drawn the week before (this week), and the results would be ready in time to be discussed at my appointment. They asked which location I wanted to go to for the blood draw, which I appreciated because the hepatologist's office isn't the most convenient site for me.

Earlier this week, before making the drive to get my blood drawn, I decided to call the lab to confirm that the orders were ready. My penchant for double-checking everything paid off, because the lab had no orders for me! I had to call the hepatologist's office and tell them my expected lab orders weren't ready, and then follow up with the lab again later.

So I got my blood drawn yesterday, and then got an email late last night saying the results were available online. Interestingly, because I got my blood drawn at my usual satellite hospital's regular lab - and not the Cancer Center lab which is affiliated with the main hospital - the results aren't in the online patient portal that I usually use. Even though all my doctors are in the same hospital network, I have to use 3 separate web sites, each with its own account, to access my records: one for the main hospital, one for satellite hospitals, and one for my PCP. Yep, it's confusing.

Anyway. My liver function tests look good!! Here's a history of all my results, including the hormone therapy pill I was taking at the time. The first number is ALT, the second number is AST. The red numbers are out of range and indicative of non-alcoholic fatty liver disease.

08/16/22 26 22 Anastrozole

08/08/22 26 26 Anastrozole

06/10/22   46 34 Anastrozole

05/13/22   57   41 Anastrozole

04/15/22   78   56 Anastrozole

03/18/22   86   63 Anastrozole

02/18/22   79   65 Tamoxifen

02/08/22   74   51 Tamoxifen

01/21/22   62   53 Tamoxifen

12/23/21   65   49 Tamoxifen

06/10/21 25 22 Tamoxifen

12/23/20 18 18 Exemestane

So the main questions I'll have for my hepatologist are: Does having ALT and AST values within normal range automatically mean that my liver is no longer fatty? Getting a FibroScan is what actually confirmed how fatty my liver was, so will I get another FibroScan to confirm improvement?

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

6/10/22: 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. 

6/2/22: 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

5/13/22: Lupron + Blood Draw and Results

After more than 2 years of monthly Lupron appointments, if the BSO surgery goes according to schedule, today will be my second-to-last Lupron injection. 

During check-in, the receptionist who is always extra friendly to me (not the original receptionist who always recognized me, who's long gone by now) was training a new person, and I waved to another familiar receptionist. The new hire remarked that I appeared to be well-known in the hospital, and I explained that I've been coming in at least once a month for almost 3 years! Ironically, I then told them about my upcoming surgery, which will put a stop to my monthly visits. The extra friendly receptionist was happy for me, that I might finally reach a point of stability in my treatment, with no more new interventions.

I got my blood drawn, and then went upstairs for the Lupron shot. The nurse who gives me the shot is not always the same, but most times it's the one who was trained by my old infusion nurse. I like her because her shots are the least painful - sometimes even pain-free - and she's always easy to talk to. She saw in my medical records that I have a surgery coming up, and I told her how the surgery means I won't be coming in for shots anymore, after the next time. She, too, expressed support and wished me luck. 

It's funny, you do something long enough, and you feel a sense of loss, even if that thing wasn't exactly something you enjoyed. I know I will appreciate not having to schedule my life around monthly appointments, but at the same time, it's a big change to my routine. In a good way, of course, but still a change, and I will miss the kindness and support of all the people I've been seeing regularly.

The good news is that my LFTs have continued to go down. Yay! They are now the lowest they've been while still being "high". (My first "high" results came in December 2021.) I don't know if lower LFTs automatically means the steatosis is also improving, but I certainly hope so. I will ask my hepatologist when I see him in August.

Meanwhile, my estradiol is back down to <5, which is where it should be. I guess it doesn't matter, though, since we know that it fluctuates and can get "too high". So it just happens to be low this month, but I don't think that will change my BSO plans. 

4/15/22: Blood Work Results

I got my blood drawn today, before getting my Lupron shot. I checked the results online, and my LFTs are now roughly what they were back in February. I think this is a good sign. They are still too high, but at least they are lower than they were last month.

3/19/22: FibroScan and Blood Work Results + Anastrozole Side Effects

I saw my FibroScan report posted on the online patient portal. I'm not entirely sure what the results mean, practically speaking, so I'm hoping I'll hear from my hepatologist, who can put the results into context. 

Here's what the report said:

CAP score: 395 dB/m 

Fibrosis score: 6.1 kPa

According to the Memorial Sloan Kettering Cancer Center, my CAP score means I have grade 3 steatosis ("S3"), which means more than 67% of my liver is fatty. The range for this score is 100 to 400 dB/m, so my number is quite high, and the report called it "severe steatosis".

The same web site categorizes my fibrosis score as "F0 to F1", which means "no liver scarring or mild liver scarring". Since the range is actually 2-7 kPa, and my score is on the high side of that, I figure maybe that means I have some mild scarring. 

I don't meet with my hepatologist again until August, but in the meantime, it sounds like I should try to adhere to the usual "healthy lifestyle" suggestions: lose weight, exercise more, eat a healthy and balanced diet, don't drink alcohol, drink more water.

Meanwhile, I got my blood drawn at my last Lupron appointment, so I also checked my LFT (liver function tests) results online. My ALT and AST continue to trend upwards, though they're still within 2-3 times the upper limit of normal, which this site calls "mildly elevated." I've been off Tamoxifen for about a month now, but maybe it will take a few months for these LFTs to settle down? I found this random Quora answer that says it can take 6-12 months to reverse grade 3 fatty liver.

Some good news is that my estradiol continues to be <5, so I'm still good for taking anastrozole (a post-menopausal medication). 

By the way, I have definitely noticed some side effects with the anastrozole. 

My joint stiffness has gotten worse again. It feels worse than when I was on Tamoxifen, but not as bad as when I was on exemestane. As usual, it's mostly in my fingers, and it's worst in the mornings when waking up. I also have it in my legs, and its worst when standing up from a sitting position. After standing up, I usually have to walk around for a few moments before I can actually stand up straight and walk normally.

I'm still getting hot flashes. They seem less frequent than when I was on Tamoxifen, but more severe in that the heat feels stronger, though the duration is probably the same as before. 

One new thing I've noticed is an increase in mucus, in both nose and throat. I don't know if it's a side effect or seasonal allergies. Recently, I've had to purposely cough a lot to clear phlegm. It doesn't feel like an illness cough, though I've taken a couple at-home rapid antigen covid tests and they've been negative. I think I've forcefully cleared my throat so much that there's a spot in the middle of my breast bone that hurts when I cough. I'm not sure what to make of this, but will mention it to my medical oncology NP when I speak with her in April. All I've found is this site that lists "cough" as a side effect of anastrozole, and this site that lists "cough" and "cough producing mucus" as "less common" side effects.

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.

2/18/22: Lupron + Blood Draw + I Picked Up a Prescription

I forgot that being hydrated helps with blood draws, and I didn't drink any extra water this morning. The phlebotomist had trouble drawing blood, she had to poke around quite a bit! I need to make a point to hydrate for future Lupron appointments, since I think they'll be drawing blood for the next few months.

On the way to getting my Lupron shot, I noticed blood dripping from my arm! It wasn't a lot, just a little leak, but the medical assistant who took my vitals got me a new bandaid. Even now, the spot where the needle went in is still a little sore. 

I didn't have to wait for my nurse to come in, the one who is best at giving injections. We chatted about being anxious for our kids now that school mask mandates will be lifted in a couple weeks. We agreed that it's still too early for masks to come off in schools, what with community transmission rates still being high. It was just comforting and validating to know that a healthcare worker parent feels the same way I do.

After my appointment, I went to CVS to pick up my anastrozole prescription. The person doing check-out said the pharmacist needed to ask me a question, so I had to wait a few minutes for the pharmacist to be available. She just wanted to make sure that I will have stopped the Tamoxifen before starting anastrozole, and I confirmed that I've already stopped. This seems like a clear benefit of having all my prescriptions in one place, and I appreciate that the pharmacy did their due diligence!

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. 

2/13/22: My Hepatologist Sent Me a Message Online

It looks like my hepatologist was working on Saturday. I got a notification about a new message in the online patient portal. A letter from my hepatologist dated yesterday says my latest blood tests showed an "uptrend" that is "not concerning" but apparently is still noteworthy enough that I should expect someone to contact me about scheduling a FibroScan. 

He also confirmed that he will talk with my oncologist about whether or not I should stop Tamoxifen. I wonder, though, if he will want to wait until after he gets my FibroScan results, so I should not expect any new developments before then.

2/8/22: Hepatology Appointment

Yesterday, I received a call to schedule my hepatology appointment, which I made for today. That's the absolute fastest I've ever gotten an appointment with a specialist. 

I've had really good luck with all my specialists, and I liked this one, too, even though I had to wait 30 minutes in the exam room before he came in. I had a book, and no time constraints, so I didn't mind. 

The hepatologist said he was not particularly concerned about my liver. The numbers that are high are only mildly high, not high enough to really worry about yet. He said sometimes, certain medications (like Tamoxifen) might cause blood test numbers to go out of whack, in a way that indicates fatty liver disease, but the liver might not actually be fatty. 

For now, the plan is to monitor my condition. He ordered additional blood tests, and depending on the results, he might want to order a FibroScan, which he described as a "mini-ultrasound" that can more accurately diagnose the state of my liver.

He went through some family medical history and lifestyle questions, and said the fatty liver is likely due to the Tamoxifen. 

He said I do not need to stop Tamoxifen at this time. He will follow up with my oncologist to discuss my case, and I guess they will figure out together if I should stick with Tamoxifen, or try switching back to exemestane. 

I asked if stopping Tamoxifen would allow my liver to recover? He said maybe. But it might also just stay the same, and not get any worse. 

I also asked if continuing Tamoxifen would make the condition worse? He said it could get worse, or it could stay the same. 

So, who knows. He did say that when the condition worsens, it takes time. So if things start to look more than just mildly concerning, there's time to stop Tamoxifen later. Fatty liver disease can lead to cirrhosis, and then to a liver transplant, but he said those outcomes are unlikely when the fatty liver results from Tamoxifen. 

I asked if I should stop drinking entirely, but he said a couple drinks a week is still okay. I think I'll stop having casual drinks at home, though, and just drink alcohol on special occasions.  

On my way out, I scheduled a 6-month follow-up appointment, and then went to the lab to get my blood drawn. 

Up until now, I've felt pretty confident in all my covid-related safety precautions. But today, waiting to be called for my blood draw, I definitely had the highest risk of exposure since this pandemic started. The waiting room was very small, only 3 seats, but at times there were as many as 7 people in there, and certainly not enough space for everyone to stay 6 feet apart. I had to wait about 30 minutes, the longest amount of time I've spent in the smallest room I've been in with the most number of total strangers whose covid status I knew nothing about. Everyone wore masks, though there were some surgical masks with visible gaps, but at least no cloth masks. If I get covid in the next week or so, I'm pretty sure I'll know where I got it.

Just for the record, non-alcoholic fatty liver disease is a chronic liver condition that puts me at higher risk for serious covid illness. Having a history of cancer is already a risk factor, plus I'm not sure if my reduced heart function during Herceptin still exists or not. (The last time my heart function was tested, it was at the lower end of normal, but still below my baseline measurement from before starting Herceptin.) So, yeah, I'll continue to take covid precautions seriously.

Incidentally, one person in the waiting room commented on how uncomfortable masks were, so I took the opportunity to introduce the room to KF94 masks, and the Bluna Facefit brand in particular. I know they are in high demand and difficult to find in stock right now, but at least I can put the information out there. I don't want people to get discouraged with masks when there really are comfortable, breathable options out there. 

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!

12/30/21: My Medical Oncology NP Called Me

My NP called to discuss the results of my blood work.

I already saw my results online, but I played dumb as if I hadn't. I just wanted to hear how she would present the results, assuming a clean slate; I guess I'm a little afraid that if I let on that I already know something, they might assume I know more than I do, and I'll miss out on some piece of information. 

Anyway, she confirmed the estradiol number is good, so they may not check it again for another year.

She said some numbers regarding liver function were a little high, and asked if I had taken Tylenol or had any alcoholic drinks prior to the blood draw. I told her about having a couple drinks the night before to celebrate the start of school vacation, and she said the lab results are definitely consistent with having had some alcohol. Just to be sure, they will check again when I go in for my next Lupron appointment, and I should make sure not to drink alcohol for 3-4 days before getting blood drawn!

What I find interesting is that it's not generally instructed to not drink alcohol before a blood draw, which to me implies that a properly functioning liver should result in "normal" lab numbers even if the patient had a drink or two the night before. It's not like I drank a whole lot, it was really only 2 glasses of wine, I think. Apparently, both chemo and Tamoxifen can affect liver function. I don't have any of the symptoms of liver damage, but I wonder if maybe my liver now just has to work a little harder than it used to.

The NP didn't mention the "Baso" number, so I guess I won't worry about it.