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. 

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". 

2/2/22: Abdominal Ultrasound

It was a bit strange going to the hospital at night. After checking in, while waiting to be called, the receptionist turned off the lights behind the desk and closed up! On her way out, she reassured me that someone would come for me soon. I waited about 15 minutes.

The technician was all business, not particularly friendly. No gown, I just had to lie down on the table and lift up my shirt enough to expose my rib cage. She kept saying, "Deep breath and hold it," and then she'd mumble, very quietly, "Breathe." Sometimes she forgot to tell me when it was okay to release the breath, so I'd just let go when I couldn't hold it anymore! At first I was lying flat on my back, then she had me roll onto one side, then the other. The whole procedure took about 45 minutes.