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

6/2/22: 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

5/11/22: Pelvic Ultrasound, Results, and Some Pre-Surgery Instructions

Yesterday I had the pelvic ultrasound to make sure there's nothing unusual about my ovaries that would complicate my BSO surgery. 

Like last time, I was told to drink water before my appointment to make sure I had a full bladder. The person I spoke with recommended 2 bottles of water, but that's an awful lot of water for me, so I again did some trial runs with 24 oz., the amount recommended last time. I couldn't do it. I kept having to pee. On the day of my appointment, I drank only 12 oz., like last time.

My bladder was plenty full for the first part of the procedure, when they pushed the probe around on my abdomen. It was pretty uncomfortable, I had to consciously hold in the pee! I was allowed to use the bathroom before the internal part of the procedure, which was a lot more uncomfortable than I remembered from last time. 

Anyway, I checked online today and was surprised to see my results available already. I couldn't understand most of the report, but it did say, "Bilateral ovaries are within normal limits." A little bit later, I got a friendly phone call from the OB/GYN's office letting me know the results were fine.

I mentioned that the doctor had told me to expect a phone call with pre-surgery instructions, but I hadn't received any call yet. She said she'd check in with the surgery coordinator.

I have to say, I'm impressed with how responsive this office has been. The surgery coordinator promptly sent me an email confirming my surgery date and providing pre-surgery showering instructions. The instructions said to use Hibiclens, but since I had an allergic reaction to chlorhexidine when I got my port installed, I called up the surgery coordinator to ask about it. She said I should just use any antibacterial soap. It occurs to me that I did shower with Hibiclens for my double mastectomy surgery, and I didn't have an allergic reaction then, but I figure it's better to be safe than sorry, so I'll just steer clear of it.   

I also asked about the pre-surgery covid testing requirements, which weren't in the email. She said the hospital will call me closer to the surgery date to give me more instructions, including when and where to get tested before the surgery. My area is in another covid surge - right now my state has Delta-level case numbers, and the kids' school district has more daily cases than our Omicron peak! - so I'll need to be even more cautious to make sure I don't get infected before my surgery. 

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.

3/17/22: FibroScan

Wow, today's appointment was super quick.

Not including my time in the waiting area (which was like 5 minutes), the procedure itself only took about 5 minutes. I guess I would have known that if I had looked up what to expect with a FibroScan ahead of time.

The technician had me lie on my back and just lift my shirt high enough to expose my rib cage. It was like an ultrasound, but the probe pulsated. It felt like a tiny fist gently punching me in the rib cage, not at all painful.

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.

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!

3/19/21: I Checked My Insurance Claims Online

As usual, I'm adding these costs 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. 

12/23/20: Lupron + Medical Oncology NP Appointment + Blood Work: $1,959.16
12/28/20: GYN Appointment: $324
12/28/20: GYN Hospital: $248.60
1/2/21: Exemestane (generic): $1,499.99
1/7/21: Breast Center NP Appointment: $221
1/11/21: Pelvic Ultrasound Radiologist: $227
1/11/21: Pelvic Ultrasound Hospital: $857
1/11/21: Blood Work: $764
1/21/21: Medical Oncologist Phone Appointment: $260
1/21/21: Medical Oncologist Hospital: $105
1/22/21: Lupron: $571.16
1/22/21: Tamoxifen (generic): $228.99
2/19/21: Lupron: $571.16

Total cost to date: $422,571.99
With insurance, cost to me: $8,254.63

1/12/21: My OB/GYN Called Me

She got the pelvic ultrasound report. (That was fast!) I've been checking the online patient portal myself, but haven't seen it.

She said everything looks normal. The uterine lining is 3 mm, which is considered "thin" and normal for menopause, when the lining should be less than 6 mm. No polyps or unusual tissue, and the ovaries look normal. There is no "structural" reason to explain my bleeding, so the cause must be hormonal, which implies that my ovaries are not being completely suppressed by the Lupron.

I did see that the online patient portal was already showing my blood work results, so I asked her about those, too. My estradiol number (which should be very low) is still higher than it was last July, but lower than it was in December. This just shows that there is still some notable amount of estrogen in me.

My FSH is still too low for natural menopause, but she explained that FSH should be low because of the Lupron; in natural menopause, FSH should be very high, but Lupron works specifically by suppressing FSH. So today I learned that the markers for chemically-induced menopause are not the same as the markers for natural menopause. Because of Lupron, I should actually have very low levels of FSH (contrary to what I thought in December). My numbers are indeed low, though Monday's blood test showed higher levels than before. Apparently, the FSH may not be low enough, since my body is still producing enough estrogen to stimulate bleeding. 

The bottom line is that I shouldn't be producing estrogen, because estrogen fueled my cancer. The whole point of Lupron hormone therapy is to stop my ovaries from producing estrogen, to reduce my chances of recurrence.

So, now I wait for my medical oncology team to call me. I figure they will want to talk to my OB/GYN before circling back with me. 

1/11/21: Pelvic Ultrasound

This post being about a pelvic ultrasound should presumably serve as a TMI warning in itself...

I was supposed to drink 24 oz. of water 60-90 minutes before this appointment, to make sure I had a full bladder for the procedure. In recent days, I did a few trial runs of drinking various amounts of water and then waiting 90 minutes. I think if I had followed the instructions exactly, I might have peed myself during the ultrasound.

Luckily, the person on the phone with whom I made the appointment did clarify at the time that it's not the exact amount of water that matters, and I should not drink so much that I feel uncomfortable. So, I ended up drinking only about 12 oz. I felt plenty full by the time my appointment rolled around, and the technician didn't comment one way or the other.

I was surprised that the technician didn't ask me to change into a gown right away. Apparently the first part of the procedure is a transabdominal ultrasound, so I just had to lie on my back and lift my shirt just high enough, and push the front of my pants just low enough, for the technician to rub the transducer around on my lower belly. There was a lot of gentle pushing around, and I could not relax at all, my stomach muscles were actually tense from trying not to pee! This part lasted maybe 10 minutes, and she explained that the next part would be transvaginal. I said I was worried about my full bladder, and she said I'd be able to empty my bladder in between. Phew!

After coming back from the bathroom, the technician had me undress from the waist down and lie on the table with my feet in stirrups, with a sheet draped over me. She actually asked if I wanted to put the transducer in myself? I was not expecting that question, but I told her it's okay for her to do it. I thought she might slowly talk me through it, like the OB/GYN usually does, but nope, in just a couple seconds, before I knew it, the transducer was inserted. The next several minutes were about as uncomfortable as you would imagine.  

The whole appointment lasted about 30 minutes. 

Afterwards, I headed over to the Cancer Center part of the hospital for a blood draw, as instructed by my NP. Everyone seemed surprised to see me coming in off-schedule. I think they might have even called my NP to double-check the order. 

12/30/20: My OB/GYN Called Me

She called to tell me that some routine GYN tests came back negative, and also to make sure I've scheduled the ultrasound she ordered.

I jumped on the chance to ask her some questions. Since my appointment, my estradiol number did come back, and it's 31. There is some overlap in the normal range for post-menopause and pre-menopause, depending on where you are in the menstrual cycle, and 31 is in that overlap. It's low, but not very low. She said my medical oncologist will have to weigh in on whether or not that number is "low enough" for cancer treatment purposes. I pointed out that my estradiol had increased from a value of "less than 5" in July, and she said that the value can fluctuate, but agreed it's noteworthy that it went up. 

I also asked if the ultrasound will help shed any light on whether or not the Lupron is working. She said the ultrasound will measure the uterine lining. In post-menopause, the lining should be on the thin side; a thick lining could indicate that my body is producing more estrogen, which causes the lining to grow. 

I think she sensed that I was trying to think a few steps ahead in this process, i.e., what does it mean if the Lupron isn't working? She emphasized that we are at a "to be continued" point in the discussion, and the pelvic ultrasound will give us more information. She'll touch base again after she gets those results, and then I'll circle back with my medical oncologist.

12/28/20: OB/GYN Appointment

I assume this post's title is sufficient warning for potential TMI in this update...

Today's appointment was initially scheduled for April, but was re-scheduled 4 times due to COVID-19. Then I re-scheduled it one more time to get an earlier date after I had that unexpected spotting. 

My monthly Lupron shots for ovarian suppression are supposed to put me in chemically-induced menopause, so any bleeding is unusual. My OB/GYN put in an order for a pelvic ultrasound, just to make sure there's nothing else going on.

She looked at my recent blood work, and apparently my FSH (follicle-stimulating hormone) level is not in the post-menopausal range. I learn something new every day, and today I learned about FSH. The pituary gland makes FSH to stimulate estrogen production. As menopause nears, the ovaries produces less estrogen, but it's like the body instinctively tries to put up a fight, and the level of FSH actually increases in an effort to get the ovaries to keep making estrogen. So, if the Lupron is working properly, I should have a high, post-menopausal level of FSH. But I don't. My FSH level is very low and in the normal range for pre-menopausal women. (1/12/21 Update: Actually, this is completely wrong. I correct my own misunderstanding in this post.)

(I guess when my oncology NP took a quick look and saw that all my blood work came back "normal", she forgot that my FSH isn't supposed to be in the "normal" range.)

I told my OB/GYN that my NP had also put in an order to test for estradiol, but those results still weren't available. The OB/GYN agreed that seeing the estradiol number would help determine whether or not my body is actually producing estrogen again. I also mentioned that I haven't had any hot flashes in a while, and I noticed around the same time as the spotting that my vaginal dryness had improved. She said both those things could be additional signs that my body is producing estrogen.

If that's the case, I think the problem goes back to my medical oncologist, to figure out what to do about it. I'm wondering if there is a higher dose of Lupron I could get, or if I'll have to get my ovaries removed after all. I reminded my OB/GYN about the concerns we discussed at my last visit, and she said that even if the possible long-term risks are valid, she thinks breast cancer is the bigger threat right now, and should be prioritized over possible problems that might develop later. If I do get an oophorectomy, she'd refer me to a gynecologic oncologist to do the procedure.

Maybe I'm getting ahead of myself. I guess my next steps right now are to wait and see what the estradiol number is, and what the pelvic ultrasound shows. Then I'll circle back with my medical oncologist and see what she says.

My OB/GYN did say that the internal exam looked fine, and she doesn't expect anything to come up in the ultrasound. She clarified, too, that my exam looked normal for my age, not for someone in menopause, which is another piece of data pointing to estrogen.

Back at home, I called to schedule my appointment for the pelvic ultrasound, which will be in a couple weeks. Apparently I need a full bladder for that procedure. I'm supposed to void my bladder 90 minutes before my appointment time, and then drink 24 oz. of water within the next 30 minutes, giving the water 60 minutes to get to my bladder. (I think "void the bladder" is a funny phrase. Why not just say "empty the bladder"?) 

I have to say, I really appreciate it when people on the phone are kind and patient. I feel like the scheduler I spoke with understood that chances are, if someone needs to schedule a pelvic ultrasound, there is some amount of anxiety and fear involved, and just being nice can go a long way in making the caller feel better.

So all of this kind of feels like a blow. I had hoped that after I finished Herceptin and got my port out, I would finally settle into a stable phase of treatment with far fewer medical appointments. I've used this analogy before, that it feels like I am just being carried along on a river of cancer treatment. The DMX surgery and chemo felt like white water rafting, and this past year still felt like rough waters while I tried to manage my side effects. I was looking forward to having a nice stretch of smooth sailing, but it's like the river took an unexpected turn, and there might be more rocks up ahead. 

7/2/19: I Checked My Insurance Claims Online

After getting that MRI bill, I wondered why I hadn't been charged for ALL those appointments and tests in May and June...

I logged into my online account for my health insurance. It looks like, since I reached my personal deductible already, my insurance is paying all claims in full.

Usually we get an insurance statement that tells us the full charge, how much the insurance will pay, and how much we should expect to be billed by the provider and/or hospital. But maybe they won't send us a statement if our expected charge is $0?

It does look like we should expect to be billed for some office visit co-pays, which I don't remember being asked to pay on the day of the appointments...

Below I am listing all the new claims so far. Unless otherwise noted, we paid $0. Apparently, this is how much it costs to have breast cancer in America.

(Incidentally, our insurance coverage changed on July 1. Our deductible balance was re-set, and our new plan has a lot of up-front costs before insurance kicks in. So I expect we'll have more to pay starting with the breast surgeon appointment.)

5/13/19: Mammogram & Ultrasound Hospital: $857
5/13/19: Mammogram & Ultrasound Radiologist: $246
5/16/19: NP Appointment: $422 (I owe $20 co-pay.)
6/4/19: MRI Radiologist: $377
6/4/19: NP Appointment: $83 (I owe $20 co-pay.)
6/13/19: Biopsy Hospital: $3,074.54
6/13/19: Biopsy Pathologist: $256
6/13/19: Biopsy Pathologist: $858 (Separate charges for each sample?)
6/13/19: Biopsy Hospital (Pathology Lab?): $2,420
6/17/19: Hospital (Pathology Lab?): $650 (Presumably related to biopsy.)
6/20/19: Mammogram & Ultrasound Hospital: $791
6/20/19: Mammogram & Ultrasound Radiologist: $370
6/20/19: Genetic Counselor Appointment: $212 (I owe $60 co-pay.)
6/20/19: Genetic Testing: $1,500

Sub-total: $12,116.54
With insurance, cost to me: $100

Total cost to date: $17,724.22
With insurance, cost to me: $520

Notably, this current total reflects only my diagnosis. I haven't even received any treatment yet!

6/26/19: Letter with Mammogram & Ultrasound Results

It feels weird getting these formal results in writing after already moving forward with verbal results and next steps.

This time, the letter informed me that the diagnostic mammogram and ultrasound on my left breast "showed an area of abnormality...[and] a biopsy is recommended."

I already have an appointment for the MRI with biopsy, but I'm leaning towards getting the double mastectomy, which would make the MRI with biopsy moot.

6/20/19: Mammogram and Ultrasound - Inconclusive + NP Appointment

Today's appointment was scheduled because the MRI showed "something" in the left breast.

I thought they were going to do an ultrasound of my right breast, too, but they didn't. Maybe there's no need to look any further now that it's clear the right breast will be removed anyway.

In the waiting room, I was asked to fill out the standard mammogram paperwork again. This time, my answers included my recent MRI, biopsy, and breast cancer diagnosis. My NP popped in and said I could ask to speak with her at any time during my visit.

First, I got a diagnostic mammogram of my left breast.

Next, the ultrasound of my left breast. When the ultrasound technician left to show the images to the radiologist, the nurse who was at my biopsy came in. She was so comforting, I couldn't help a few tears from slipping out.

The technician and the radiologist returned. The radiologist was the same doctor who performed my biopsy. She said the technician didn't see anything in the ultrasound. She repeated the ultrasound herself to confirm the same.

So, neither the mammogram nor the ultrasound could explain what the MRI showed. The radiologist recommended an MRI-guided biopsy for my left breast, and also genetic testing. Before leaving, she gave me a kind, sympathetic, "I'm sorry you're going through this" kind of look.

At this point, my appointment was technically over, but I asked if I could speak with my NP.

I held it together until my NP walked into the examining room. She handed me some tissues and reassured me my reaction was normal. 

She said she is still in the process of making the appointment with the plastic surgeon.

She will make my appointment for the MRI with biopsy. That appointment would have to take place in the city. These appointments are typically made about 2 weeks in advance.

She will put in a referral for urgent genetic testing. They will call me to set up an appointment. 

She said genetic testing results typically take about a week. Even if the results aren't available in time for next Friday's appointment with the breast surgeon, we should still keep that appointment. 

We will proceed assuming both the biopsy and genetic testing are negative.

If the biopsy comes back as cancer, or if the genetic testing shows I carry genes linked to breast cancer, the surgeon would likely recommend bilateral surgery - a double mastectomy.

The NP said that even if both tests are negative, I should still think about whether or not I want to get both breasts removed. For some women, preserving natural breast tissue is very important. For others, reducing the anxiety of cancer recurrence is more important. If I decide to get a double mastectomy for preventative reasons, she would cancel the MRI biopsy, as the results would be irrelevant if the left breast is going to removed anyway.

I asked if there is any chance of recurrence if both breasts are removed? She said the goal is to remove all the breast tissue, but sometimes it's not possible, so there is a small 1-3% chance of recurrence even after a double mastectomy.

And how would I be screened for cancer, if there are no breasts to image? She said I would have regular clinical visits with her, the NP, and she would perform physical exams to feel for lumps. (I didn't think to ask, but will add to my list: Would breast reconstruction surgery affect the ability to palpably detect new lumps?)

Regarding breast reconstruction surgery, she said I don't need to decide that now. I can always choose to have it done at a later date. It was something of a relief to have one less thing to worry about right now.

To aid her in setting up my appointments, I had previously given her my summer vacation schedule. I told her to disregard them. I don't want to delay treatment.

6/17/19: (Diagnosis) My NP Called Me with Biopsy Results - I Have Breast Cancer

My posts are now caught up to real time. I'll post new information as I receive it.

My NP called me on the 2nd business day after my biopsy. "The two lesions both show breast cancer."

I have to say, I did not expect this.

Both diagnostic mammograms of my right breast showed "no evidence of cancer."

After two ultrasounds on my first lump, two different radiologists identified it as a sebaceous cyst, and were unconcerned. (I am not clear on this, but is the first lump itself still a sebaceous cyst, and the cancer cells are underneath it?)

It was only because of the appearance of the second lump, which did not show up on the second ultrasound, that the MRI was ordered, which led to the biopsy, which led to this diagnosis.

Anyway. The NP called the cancer "grade 2". She said there are 3 grades. According to this site, "grade 2" means the cancer "looks less like normal cells and is growing faster".

She said the testing on the "receptors" takes more time, and we still need more information on those. Depending on the receptor testing results, the cancer may respond to hormone medication. She said a particular protein called "HER2" can help indicate how aggressive the cancer is. None of this made much sense to me on the phone, but later I read up on breast cancer hormone receptors and HER2.

The NP confirmed my upcoming ultrasound appointment, then said she wanted to add a diagnostic mammogram of my left breast to that appointment, so we have all possible testing done for both breasts.

The next step after that is to have an appointment with a breast surgeon. But I guess some things still need to happen behind the scenes, because she said she can't set up that appointment yet. Maybe the receptor testing results will dictate what kind of appointment I need with the breast surgeon.

My NP said she will call me again on Wednesday to check in, to see if I have any questions. Hopefully by then she'll have an appointment with the breast surgeon for me.

After I hung up with the NP, I thought of a question. I called her right back, and luckily she was still available to talk. I asked her if, now that I had been diagnosed with breast cancer, should I stop taking my birth control pill? She said yes, once a person is diagnosed, they do recommend stopping any hormone medication. It's not imperative to stop immediately, but as soon as I'm able to stop, I should stop. (I stopped immediately.)