1/28/22: I Called to Schedule My Abdominal Ultrasound

Time and time again I am reminded that I am ultimately the only person in charge of my own medical care.

When I spoke with my medical oncology NP on Tuesday morning, she said I should plan to get the ultrasound of my liver within the next week or so, and that someone would call me to schedule it, maybe even by the end of the day. I did not get a call that day, but I figured it might take a day or so for the doctor to submit the order. Wednesday and Thursday passed with no phone call, so today, Friday, I decided to look up the number and call them myself.

I wondered if maybe the doctor forgot to submit the order. As it turned out, not only was the order on file, but the scheduler said the order requested the ultrasound be done by Monday, January 31! So, somehow I did fall through the cracks. Good thing I called!

There were no appointment times for next Monday, so I simply took the next available slot, which is next Wednesday evening at 8:15 PM. I didn't know evening appointments were a thing. I wonder if they're offered to everyone, or if they're squeezing me in because the doctor's order included a deadline.

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!

1/16/22: I Checked My Insurance Claims Online

Our health insurance coverage year actually starts on July 1, re-setting the deductible, so we've had to pay some bills. We have a high deductible health plan, but thanks to monthly cancer treatment (plus all our regular medical appointments), we met the deductible in October. 

The "cost to me" numbers below are what we expect to pay based on what the insurance company tells us. Up until now, it's been an accurate accounting of what we've actually paid, but for some reason, we haven't been billed yet for some of the appointments from last year. I don't know what's up, but I'm not about to complain about not being billed. 

7/9/21: Lupron: $571.16 (With insurance, cost to me: $521.76.)
8/6/21: Lupron: $571.16 (With insurance, cost to me: $521.76.)
9/3/21: Lupron: $571.16 (With insurance, cost to me: $521.76.)
10/1/21: Lupron: $571.16 (With insurance, cost to me: $377.16.)

At this point, we met our deductible, so everything below was covered by insurance, no charge to us.

10/4/21: Tamoxifen (generic): $228.99 
10/29/21: Lupron: $571.16 (After this appointment, stopped blogging Lupron-only appointments.) 
11/26/21: Lupron: $571.16
12/23/21: Tamoxifen (generic): $228.99
12/23/21: Medical Oncology NP Hospital (Including Blood Work) + Lupron: $1,562.16
12/23/21: Medical Oncology NP Appointment: $326

Total cost to date: $432,969.71
With insurance, cost to me: $10,197.07

1/12/22: OB/GYN Appointment

Another annual exam. I guess it might be nice if I could spread these out a bit... 

Anyway, not much to report, which is a good thing. I just wanted to make note that the OB/GYN said that no pelvic ultrasound is necessary because I haven't had any issues. Tamoxifen can cause side effects in the uterus, so I should call if I have any bleeding or spotting. Otherwise, she doesn't recommend using ultrasounds for uterine surveillance when there aren't any symptoms, because it tends to lead to unnecessary follow-up testing.   

1/6/22: NP Appointment

Today I had my yearly follow-up with an NP in the Breast Center. 

A few weeks ago, checking my appointments online, I noticed that this appointment had been switched from my usual NP to a different one. Turns out, my old NP is on maternity leave! Yay for her! I love babies. Also, when she returns, she'll be working only at the main hospital in the city. Not surprisingly, I'm a little sad about the change, because of that "everyone is moving on but I'm still here" feeling. 

This was my first time meeting this new NP, and I like her. I was impressed by how thoroughly she read my file before my appointment. She knew all about my current medications and the side effects I reported at my last oncology appointment. 

I was really happy to hear her say that my chest looks "fantastic". I mean, I'm sure she would never say anything negative, but she sees a lot of surgery results and she could have just said nothing, right? Or, who knows, maybe she is very good at her job and knows how valuable it is for patients to be reassured. But I have seen photos of both really great and really poor results, and I think mine are in the A- range. Like my old NP, she did point out the little "dog ears" at the outside edge of each incision, and reminded me that I could get them removed if I want. It might even be an office procedure, not a real surgery, but at least right now, I don't feel any urge to get it done.

She asked how I felt about not getting reconstruction. Some people do choose to reconstruct later, but I said I am really satisfied with my decision, I don't regret it at all. I can't say I love being flat, and I'm still struggling with clothes, but I never wish I had gotten reconstruction. Being flat just feels, to me, like the natural consequence of having had a double mastectomy. She was generally supportive and reminded me that I could wear prosthetic inserts if it helps with the clothing dilemma. (I literally had forgotten I had that option!) 

I did not feel rushed at all during the appointment, and was a bit surprised to realize, after it was over, that it was only 15 minutes total. 

My next appointment will be in another year.  She said I'll have yearly follow-ups for 5 years after diagnosis, so I guess a couple more years. I didn't ask what happens after 5 years; right now I don't think I'm ready to hear that they'll just cut me loose. She confirmed that I'll continue to only get manual breast exams, and that imaging will only be ordered if necessary.