12/15/23: I Spoke with My Genetic Counselor

On 11/17/23, I emailed my genetic counselor to check in on the status of my VUSes (variants of uncertain significance). I also wanted to give her an update on my own medical history, including last year's oophorectomy and the genetic testing results of some relatives. The last time I had contact with my genetic counselor was over 2 years ago, so I first checked online to make sure she's still a member of the Cancer Genetics team. I sent a brief message to just confirm that I was emailing the right person.

By 12/4/23, I hadn't gotten a response, so I followed up with another email to the same address. Since the first email had not been returned as undeliverable, I figured the address was still valid. I was polite and tried not to be pushy, since there was no urgency. 

To review, I have 2 VUSes on the BRCA2 and PALB2 genes, both of which are linked to breast cancer and ovarian cancer. Originally, it was important to follow up on these VUSes because if one or the other turned out to be a pathogenic mutation, I'd be at increased risk for ovarian cancer and would want to consider getting my ovaries out. But since I ended up getting my ovaries out for other reasons, the status of the VUSes don't actually matter much for me anymore. Still, if either of the VUSes are ever re-classified as harmful, then that information would certainly be useful for my kids to know, especially my daughter.

Anyway, by 12/14/23, I still hadn't heard back, so I sent a message to the general Cancer Genetics email address. The very next day, my genetic counselor called me! 

She apologized profusely for not responding earlier. She said she did most of the research into my VUSes on the day she received my email, but she also made inquiries and had to wait for responses. Then she just forgot to email me back. Not sure why my first follow-up email also managed to fall through the cracks, but it was yet another good reminder that a patient needs to be their own best advocate. 

Later in the day, I logged into the online patient portal to see the genetic counselor's notes on our conversation, to make sure I didn't miss anything. This post includes information and quotes from both the phone call and her notes.

Back to the phone call. I actually have 4 VUSes total, but the other 2, on CDKN1C and MSH2, aren't on genes related to breast cancer, so mostly I've ignored them. My genetic counselor said the MSH2 gene is linked to a number of cancers, mostly colon cancer, but since it's still classified as a VUS, she's not worried about it. She didn't mention the CDKN1C VUS, and I didn't bother asking.

She explained that there's a clinical database called ClinVar where laboratories report their results. There were 4 laboratories that reported on my PALB2 variant, and all 4 labs continue to classify it as a VUS.

The BRCA2 variant, however, was more complicated. Of the 6 labs that have reported on my BRCA2 variant, 5 still classify it as a VUS. A 6th lab, however, now considers it pathogenic, meaning they think this variant is harmful and could cause cancer. But. "Unfortunately they did not submit any supporting evidence for this interpretation. Given this is a non-US based laboratory which is not CLIA-certified, it is difficult to assign any significance to this interpretation." Basically, there is no documentation on what kind of standards this lab uses, so there's no way to know what level of confidence to place on their report.

Notably, though, this 6th lab is in China. I remembered what my first oncologist said about race in clinical studies, how in the U.S. the vast majority of patients are white, so results may not apply well to me, a Chinese person. I asked the genetic counselor if she thinks the fact that this lab's data represents patients who are almost certainly all Chinese means I should put at least some weight on their results? She conceded that their data set probably includes more Chinese people than all U.S. labs combined, but with no way to assess the legitimacy of the lab's results, she advised going with the majority opinion.

Moreover, she said she reached out to another lab called Myriad Genetics, which has extensive experience with BRCA1 and BRCA2 genes. I don't understand why they weren't included in the list of labs reporting in ClinVar, but she said there's been a few recent publications referencing my specific variant, and still Myriad considers it a VUS, based on their own data studying this variant in 17 families. Essentially, they just haven't seen this variant tracking with an increased risk of cancer.

She also mentioned that my particular type of variant can be hard to understand, as it consists of just a single nucleotide change. If I'm reading my genetic testing results correctly, I think my BRCA2 gene has a "T" where there should be an "A". Apparently, the question that needs to be answered is, given this variation, is the gene still functional?

As for what all this means for me. She said that if the variant was reclassified as pathogenic by a reputable U.S. lab, we'd have a conversation about taking action. I asked her what kind of "action" would be recommended, and at the same time told her about my oophorectomy. I could actually hear the relief in her voice, she clearly considered this good news. Getting my ovaries out would be the most drastic action on the table, and since I already did that, it was basically one less thing to worry about.

We also talked about what a pathogenic BRCA2 mutation would mean for my daughter. She said my daughter would be recommended to start breast cancer screening at age 25, including yearly mammograms and yearly MRIs, offset so that imaging is done every 6 months. I did see a similar recommendation online, but also found a site that recommended starting the imaging at age 30. Whatever the age, it sounds so burdensome to me, I hope she doesn't have to start so young. When she's older, she'll have to decide for herself if she wants to get genetic testing done; if she doesn't have the same mutation, she could be spared some of that early imaging, but if she does have the mutation, it could introduce additional anxiety and fear.

If the variant remains a VUS, my genetic counselor said my daughter would be expected to start breast cancer screening 10 years before the age I was diagnosed. (I was diagnosed at age 43, but I found the lump at age 42.) This is the same recommendation my PCP gave me, though of course my daughter will have to discuss all this with her own healthcare providers when she's older.

Finally, we talked about the genetic testing of my relatives. There is no known cancer on my mother's side, but quite a few cases of cancer on my father's side. I had previously given her the genetic testing results of a paternal cousin who doesn't have cancer, and now gave her the results of 2 other paternal cousins, also without cancer. I'm not really sure how useful the results are, but I found it interesting that we don't have any overlapping VUSes. She said getting the results for my father and my one surviving aunt who had breast cancer would actually be very helpful. Specifically, she said my dad's results "will clarify whether either or both of these variants were paternally inherited... even if he does carry 1 or both of the variant it is not indicative of causation." Regarding my aunt, if she "does not carry either of these variants, that certainly suggest that either or both of these variants may not be the cause of early onset breast cancer in the family." In which case, even if my daughter did inherit the same VUSes, it might be less scary. 

My genetic counselor said she would try to streamline the genetic testing process, so any relative of mine in the area who wants genetic testing just has to have a brief telehealth genetic counseling appointment with her, and she'd ship them a saliva kit, which they can do at home and then mail back the sample.

Phew. That's a lot of information. And a lot of uncertainty.

8/9/23: My Cardiologist Called Me

She called to discuss my stress test results and said overall everything looks fine, she did not see anything alarming in the results. Yay!

She did mention that my heart function, i.e., my ejection fraction of 50-55%, was on the lower end of normal. She noted that it was comparable to my last measurement of 57%, so it's "normal" for me and not necessarily an indication of poor heart function; as long as it stays over 50%, I should be fine. I pointed out that my pre-Herceptin baseline was 63%, and she agreed that the decrease could have been caused by Herceptin, but there's no reason to think that it will go down any further. 

She confirmed we'll have an appointment next June (already scheduled), and at that time, she will probably schedule me for another echocardiogram to be done as a 1-year follow-up, just to make sure my ejection fraction is stable.

6/13/23: Phone Calls to Schedule Cardiology Appointment

Ugh, phone tag.

The cardiology department called my cell phone, but I missed the call because I had the sound turned off, which is not unusual when I'm at home.  

I called them back, but was immediately routed to voice mail. I left a message with my home phone number.

I did get a call back, but they called my cell phone again! Luckily I suspected they might, and had kept my cell phone near me with the sound on just in case. 

Anyway, I was surprised that they were able to schedule my appointment for just a couple weeks from now. I was expecting to have to wait months for an appointment, but I guess the referral from oncology pushed me up the queue. 

I have to say, I was a little disappointed that the person who left the message, who I think was the same person I spoke with, was very curt. She was all business, spoke quickly, made no pleasantries, did not review or confirm this department's location on the hospital campus. I might even say her voice was devoid of kindness. It was jarring compared to the friendly staff I usually encounter, but OH WELL. 

6/9/23: My Medical Oncology NP Called Me

She conferred with my previous cardio-oncologist, who was able to look at my EKG results and determine that there's "nothing urgent". But, they still think it's a good idea for me to be seen by a cardiologist, so I should expect a phone call to schedule an appointment.

As it turns out, though, my original cardio-oncologist, who I liked a lot, now only sees patients in the suburban satellite office one day a month; the rest of the time she is in the city. Since I don't like driving into the city, I opted to see a new cardiologist who is now available at the same location as my Cancer Center. (This location did not used to have any cardiologists on site, otherwise I would have gone to them from the start.)

6/5/23: My Medical Oncology NP Called Me - I Have an Arrhythmia

Just when I thought my treatment had settled into a stable state!

My medical oncology NP called to tell me that even though my recent EKG showed my QT/QTc is in the normal range, it also showed a kind of arrhythmia. It wasn't there before and so they want me to get it checked out by a cardiologist.

I am really getting kind of tired of this M.O. Every time I think my treatment is stabilizing, something new pops up. I was fine on exemestane, until my ovaries kept making too much estrogen, and so I had to switch to Tamoxifen. I was fine on Tamoxifen, until I developed non-alcoholic fatty liver disease and had to switch to anastrozole, which meant I had to get my ovaries out (since they were still making too much estrogen). A routine pre-operative EKG showed I had borderline QT prolongation, which resolved after I stopped Lupron, but now I have this arrhythmia! Ugh.

Actually, my NP said that she wanted to send me to a new cardiologist because the one who found my borderline QT prolongation works in a clinic and doesn't take regular patients. Knowing the value of self-advocacy, I reminded her that I used to see a cardio-oncologist back when I had a low ejection fraction while on Herceptin. My NP said she would call that cardio-oncologist and figure out next steps for me; maybe the cardio-oncologist can compare my EKG with previous EKGs and see that the arrhythmia is harmless, or else I might need to schedule an appointment. Either way, she seems to think that my yearly EKG screenings going forward should be done by cardiology. 

Now, I know there are a lot of long-term risks related to ovary removal, but I haven't found anything specifically mentioning heart arrythmia, and anyway my first EKG after my oophorectomy was fine. But what changed between that EKG and this EKG? I got covid. And there's plenty of evidence that COVID-19 can cause heart problems. 

What strikes me, too, is that, covid or not, whatever this is, it probably would not even have been found if I weren't getting screening EKGs as part of cancer treatment.

8/24/22: Hepatology Appointment

I dare say today's phone appointment was a pleasant conversation!

The doctor carefully reviewed the up-and-down trend of my LFT results over the past year. He said my current results are "completely normal" and indicate normal liver function!

I asked if that means I no longer have fatty liver disease? He said yes, given my BMI and LFTs, I can say I do not have fatty liver disease. 

I know by now that doctors never order tests to confirm normal results, but I figured I'd ask anyway if I should get another FibroScan. He said sometimes, imaging results are "consistent" with fatty liver, but when a biopsy is performed, there's no fat. The FibroScan also looks for scarring, and the important thing is that my prior FibroScan showed little to no scarring. Since everything now points to normal liver function, there's no need for a FibroScan. 

I was impressed that the doctor spent a surprising amount of time reviewing my hormone therapy regimen, even asking about my ovary removal and side effects. I told him that my side effects on anastrozole (mostly just joint stiffness in my fingers, since other symptoms like hot flashes and vaginal dryness can be attributed to menopause) are worse than when on Tamoxifen, but better than when I was on exemestane, and I consider them manageable. He emphasized the importance of finding the right balance between treatment and side effects; he didn't say it outright (presumably because these medications are squarely in my oncologist's domain) but it's clear to me that since Tamoxifen was the probable culprit leading to my liver problems, I'm unlikely to have a recurrence of fatty liver as long as I can withstand the side effects of other medications and stay off Tamoxifen. 

I had one final question about whether or not to worry about my ferritin number still being a little elevated. Because my ferritin was very high (538) around the same time my LFTs were high, and it has since decreased to only being a little high (202), the doctor said it's likely related to the fatty liver, and he's "not concerned".

I'll have one final follow-up in 6 months just to make sure everything is still normal.

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?

6/24/22: (8 Days Post-BSO) Incision Check Appointment

For the record, Tuesday was the first day I didn't take any ibuprofen.

My left incision continues to be the limiting factor of my recovery. The bruise is huge so I know it will take time to go away. The colors seem to be changing from dark purple to light purple and green, so I think that's a good sign. When I walk, it's that left incision that causes discomfort and makes me walk slower and a bit hunched over, with my left hand supporting the incision area. 

All that's fine, but last night I noticed a small, firm lump at the left incision site. I don't know if it was something new, or if I had previously assumed it was just part of the bruise-related swelling, but last night it felt separate from the bruise. 

First thing this morning I called the GYN surgeon's office and described both the bruise and the bump. The same nurse who called me last week gave me a call back. She said because it's Friday and we're going into the weekend, it would probably be good to "get eyes on it", so she scheduled me in for an appointment later this morning. I was so thankful and relieved because I definitely wanted someone to look at the bruise and feel the lump. Also, luckily, the doctor happened to be in the office today, so the nurse said the doctor could even take a look herself. 

After checking in, I met the nurse, who was just as friendly in person and really had a vibe of wanting to help. There was also a second nurse, who I assume was a student. The friendly nurse had me lie down on the examining table, and she looked at the bruise and bump. Most surprisingly, she also commented on "this other bruise" on my pubic bone. (Sorry for the TMI.) I had not even noticed this bruise! I couldn't tell them when it appeared. It doesn't hurt, and I guess I just didn't look down there.

She asked me a lot of questions to make sure there were no other complications, and then she left to get the doctor.

The most important thing is that the doctor used the words "not worried". I'm a big worry-wart, so I latched onto those words for reassurance. 

While the doctor was examining the bruise and feeling the bump, the nurse removed the Steri-Strips on both the left and right incisions. (The bellybutton only had the dressing that I removed before showering on Saturday, no Steri-Strips.)

First, the doctor said that she's not surprised that the left incision area is bruised because that incision was bigger (about 1 cm instead of 0.5 cm), and it sounded like that side took more of a beating. (My words, not hers.) She did seem surprised that the bruise was so large; end-to-end it's about as long as my hand. 

She was perplexed about the bruise on the pubic bone, though. She said no part of the surgery extended down that far, so she didn't know why that area would get bruised. She speculated that maybe some internal blood flowed from the big bruise downward, but there was no other bruising in between that might have supported that theory. The nurse used a skin marker to outline the edge of this bruise. I should keep an eye on it, and call the office again if it gets bigger. 

The doctor asked if I bruise easily, and I said I don't know, but maybe, because I do remember bruising when I got a biopsy, and it's not frequent, but also not unusual, for me to bruise up when I get my blood drawn. She guessed that maybe if I bruise easily, even the smallest trauma could cause one. In any case, there's not much that can be done about the bruises, just let them heal on their own, which can take a couple weeks. 

Regarding the lump, the doctor seemed very confident that it's scar tissue. She said it may take a couple months to go away, though many sites online suggest scar tissue might never go away. I asked if I should massage the site, and she said it can help, but it's not something I should do until later, after the incision is fully healed. 

They also advised me to ice the left incision, I think to help reduce the swelling. For the same reason, the student nurse suggested I start taking ibuprofen again; even if I don't need it for pain, it's also an anti-inflammatory drug, so it can help reduce the swelling around the bruise. 

At this point, it seemed like the next course of action is just to monitor the bump and bruises, and call back if they seem to be getting worse, like if they become bigger or more painful, or if I get any signs of infection, like a fever. I said I might be taking a trip this summer, and I'm worried that I'll be out of the state when something goes terribly wrong. This is when the doctor said she's "not worried", and said recovery will just take some time.

The two nurses said I just need to be patient and let my body heal. I should listen to my body and not overdo it. It's frustrating because of the "laparoscopic surgery is easy" narrative, but my nurse pointed out that it's still surgery, so I should keep in mind 6-8 weeks as the full, back-to-normal recovery timeframe.

6/17/22: (1 Day Post-BSO) The GYN Surgeon's Office Called Me

Yesterday the PACU nurse told me to expect a call today from my surgeon's office.

The nurse set my mind at ease about the large bruise on my left incision. She said it's typical and not to worry unless it gets worse rather than better. 

She also clarified instructions I had about my Steri-Strips. I should take the dressing off before showering on Saturday (2 days after surgery), and leave uncovered until the strips fall off on their own, but if they haven't come off in 2 weeks, then I can gently help them off while in the shower. 

She was very nice, but I don't feel like she was particularly knowledgeable or attentive. I mentioned having excess mucus in my lungs that is difficult to cough up. She recommended holding a pillow to my incisions when trying to cough, but otherwise said to treat the cough as I would normally, like with cough drops. She did not address the mucus build-up, and when I later looked at her notes in the online patient portal, she said I had a "dry cough"! 

I also mentioned that if there's excess mucus in my nose, and I try to sniff it up, it actually hurts my lungs/chest, and that it feels especially good when I take deep breaths. I was hoping she would respond with deep breathing exercises, which are highlighted in articles about BSO recovery and surgery recovery in general, but she didn't. I will just continue with the deep breathing anyway.

When I described my shoulder pain, she said it was probably from being placed in an uncomfortable position during surgery. She did not attribute it to the gas pumped into my abdomen during surgery, which was the explanation offered by the PACU nurse and also these articles about BSO surgery.

She did remind me to drink a lot of fluids, and to walk around to help relieve constipation. Mostly she wanted to make sure I knew when to call the doctor, like if I have heavy bleeding, increasing pain, or signs of infection.  

I also scheduled my follow-up appointment, which will be in 3.5 weeks.

I have to say, a lot of people, including many in Facebook support groups, made it sound like recovering from an oophorectomy is easy-peasy compared to a double mastectomy. I mean, sure, it's relatively easier, but I still think it's objectively difficult. Presumably the recovery time will be shorter (about 1-2 weeks), but during that time, there's still plenty of pain and discomfort to manage.

6/15/22: Phone Calls

Before I had a chance to call my GYN surgeon's office this morning, to make sure everything is in order, the surgery coordinator called me!

She said I am all set for tomorrow, and she also shed some light on this whole "medical clearance" situation.

She said medical clearance is only needed if there's something concerning in my medical history, and the fact that I've seen a cardio-oncologist was likely what flagged me as needing it. Normally, the hospital would inform the surgeon's office about the patient needing medical clearance, and they would take care of getting it, but the surgery coordinator said no one told her, and moreover, she thought it was odd that the hospital would tell me directly, like usually it's something that happens behind the scenes, not something patients have to manage themselves.

Yesterday when I spoke with my oncology nurse after the cardiology appointment, she said she would reach out to the GYN surgeon's office to make sure they saw the cardiologist's notes, since she was basically just a middle man in all this. I realize now that my oncology office, and my oncology nurse specifically, were really going above and beyond by doing the job that the GYN surgery coordinator should have been doing. (My PCP office, on the other hand, was the least helpful of all.)

But I absolutely do not hold anything against the surgery coordinator, who sounded rather put out that she had been left out of the loop. She said she asked the hospital why she wasn't notified, and the person at the hospital seemed to say that they figured everything was all set because I already had an oncology appointment scheduled. But of course, the surgery coordinator knew that she would have been left holding the bag if I wasn't cleared. 

Maybe some people might think the surgery coordinator was being unprofessional by telling me all this, but I totally appreciated it!! I value accountability and transparency, and I feel better knowing what happened versus what should have happened. Having the full story made me feel like it's okay that I was overwhelmed by the last few days, because they objectively didn't go as smoothly as they should have, since I did fall through the cracks a bit. Once again, another clear reminder that we, the patient, have to be our own best advocate!!!! 

Anyway. The hospital was scheduled to call me between 2:00 and 4:00 PM, but they called me early at 1:45 PM. I'm a stickler for planning so I can't say I appreciated being called earlier than scheduled. Ha. They just confirmed my arrival time at the hospital, and also no food or drink after midnight tonight.

Oh, incidentally, I did get a notification from one of the online patient portals saying my covid test was negative. 

6/14/22: Covid Test + Cardiology Appointment

Today I found a good web page that explains QT prolongation. It's much better than the links in yesterday's post.

The short of it is, I don't require any more follow-up in cardiology, and I'm cleared for my surgery on Thursday! Phew. 

I started the day by driving to the surgery hospital for my covid test. 

I got there early, so while waiting for my appointment time, I called my oncology nurse and left a message about my cardiology appointment this afternoon. I was sure she could see the appointment in the online system, but she had asked me to call, and I found it reassuring to be in contact with someone who was basically tasked to help me manage this situation. 

The covid test took all of 10 seconds to administer. The nurse said the ordering physician will get the results. They'll call me if I'm positive, and probably won't call me if I'm negative. 

By the time I got home, I had just enough time to eat lunch before turning around and leaving for my cardiology appointment in the city. 

I gave myself what I thought was a ridiculous amount of extra time, but with a little traffic and a lot of time spent circling up and up the parking garage until I found open spaces, and then walking to the hospital, I got to the Cardiac Clinic just in time for my appointment.

When the medical assistant took my vitals, I was still feeling rushed from trying to arrive on time and stressed from driving in the city, not to mention anxious from just being there for a cardiac issue with my surgery on the line. She took both my blood pressure and my heart rate twice, giving me time to calm down in between. Then she did another EKG.

The cardiologist was all business, with a calm demeanor that probably serves him well in this field. He didn't tell me the QTc value, but he said it was "borderline" prolongated. Interestingly, in line with this article, he took the time to manually re-calculate the QTc. It was still borderline.

I find it noteworthy that in 3 EKGs, the leads on my legs were placed in 3 different places. On Friday (the EKG with prolonged QTc), the leads were placed low on my ankles. On Monday (the EKG with normal QTc), the leads were placed in the middle of my calves. Today (the EKG with borderline QTc), the leads were placed low on my calves, but above my ankles.

Anyway, the cardiologist asked me a bunch of questions about my own medical history and my family's. Do I ever pass out? Has anyone under 60 ever died suddenly and unexpectedly? He said he didn't think I have Long QT Syndrome, which is basically the only potential issue with a prolonged QTc. I just happen to have a slightly longer than normal QT interval.

I forgot to ask what would cause the prolonged QTc, since I didn't have it before. I was just 100% focused on whether or not I would be cleared for surgery. He said yes, I was fine to proceed with surgery, and no additional follow-up is needed either before or after the surgery, but I should schedule an appointment if anything changes, like if I start passing out.

I felt so relieved walking out of the clinic! I got back to my car and called the oncology nurse right away. She said she would contact the GYN surgeon's office and let them know to check my electronic medical record for confirmation of medical clearance. I hope that's that. Tomorrow the hospital is supposed to call, and I might call the GYN's office just to make sure everything's in order.

Once I got home, I checked the online patient portal. I'm glad I have access to my medical notes, because I learned a couple things that were not explicitly discussed during the appointment.

First, I hadn't asked the doctor what exactly my QTc was today, but the report says it was 461 ms, right in the borderline zone according to the QT prolongation article.

Second, the note said that the anastrozole and Lupron may be contributing factors. The cardiologist wrote, "Given her concurrent hormone suppression therapy, would be prudent to continue monitoring QT interval moving forward."

This was my first time hearing about any connection between my hormone therapy and the QT interval. I didn't find any connections when looking up Long QT Syndrome yesterday, but I did find some hits by searching for just "QT" and "Lupron" together. Turns out, Lupron can affect the electerical activity of your heart! Not only that, but QT prolongation is a known less common side effect of Lupron! The QT prolongation article also says that hormonal imbalances could be a cause. 

It seems to me that I am somehow prone to getting the less common but serious side effects of medications. First I got non-alcoholic fatty liver disease from Tamoxifen, now I've got QT prolongation presumably from Lupron. I'm reminded of what my original medical oncologist said, about how Asian cancer patients tend to respond differently to cancer treatment, perhaps in part because Asians are not well-represented in all the clinical trials where side effects are investigated. 

I'm wondering if I should be disappointed that my oncology team never warned me about these risks specifically. I guess I can't expect them to list every single side effect, and I don't think knowing about these less common outcomes would have affected my decision-making; since they are not common, I would have figured I'd be unlikely to get them, even if I knew about them. 

It also occurs to me, should I be upset that they didn't readily connect the dots between prolonged QTc and Lupron? Maybe they did, but the focus right now was figuring out if a prolonged QTc would affect my surgery. And since my surgery means discontinuing Lupron anyway, maybe it's moot. Looking ahead, I may try to ask for an EKG at my next oncology appointment, to see if the QTc returns to normal after stopping Lupron. 

6/13/22: I Really Do Need Medical Clearance

This morning I got an unexpected message in the online patient portal from my medical oncology NP saying there is an abnormality in my EKG!

It looks like my QTc is longer than normal.

First, apparently an electrocardiogram is abbreviated with either EKG or ECG. This page explains "QT" as follows:

"Doctors name the different waves on the ECG graph P, Q, R, S and T. Letters Q through T correspond to the heart cells’ “recharging” (repolarizing) after a muscle contraction. Abnormalities in the heart cells can slow the process of electrical recharging, prolonging the QT interval as shown on an ECG."

This page shows a small image of what the "QT" interval looks like on an EKG graph.

"QTc" refers to "corrected QT interval". This page explains "QTc":

"The QT interval is longer when the heart rate is slower and shorter when the heart rate is faster. So it's necessary to calculate the corrected QT interval (QTc) using [a mathematical formula]."

Anyway, mine was 473 ms. This page says normal QTc range for women is 360-460 ms. 

I started going down the rabbit hole of trying to understand what a prolonged QTc could mean. There's a condition called Long QT Syndrome (LQTS), but I don't think I have it because the congenital form is rare and I have no symptoms; there is an acquired form, but I'm not taking / don't have any of the medications or conditions that cause it. Also, I found this random page that says computer error or lead misplacement can cause inaccurate QTc calculations. So that's probably what it is, right?

Okay, all of that was just a long preamble. The point is, my oncologist could not clear me for surgery with this prolonged QTc, so they want me to see my PCP. My oncology office actually coordinated with my PCP office so before I even had a chance to call my PCP, they called me and had already set me up with a same-day appointment. My PCP did another EKG, and lo and behold, it's normal. The QTc today was 426 ms, perfectly within the normal range. Great! 

But no. My PCP said she still could not clear me for surgery because what about Friday's EKG? We don't know for sure that Friday's report was inaccurate, so what does it mean if my QTc is fluctuating wildly? So, my PCP wants me to see a cardiologist. 

In retrospect, I'm annoyed because if my PCP would not have cleared me for surgery no matter what - even with a normal EKG - then why did we waste time going through my PCP at all? Why didn't my PCP tell my oncologist to just send me directly to my cardiologist? Plus, she told me to call the cardiologist myself, adding, "If you have trouble making that appointment, let us know, and we'll help out." Since this is super time-sensitive, it bothered me that she didn't have her office just make the appointment for me, the way my oncology team did for this PCP appointment.  

I went straight home and called my cardio-oncologist. I called the first number I found, and I think it was a scheduling line. At first I asked for an appointment with my own cardio-oncologist, and then I said to check the schedule for any cardiologist, but of course there were no openings before Thursday. The scheduler said she would send a message to my cardio-oncologist's office about my situation, and they would call me back.

In the meantime, I called my Cancer Center. A nurse had called this morning to make sure I had the PCP appointment scheduled, and she had asked me to call her back with an update after the appointment. I told her about trying to get a cardiology appointment, and she was quite surprised - and dare I say annoyed! - that the PCP's office didn't set that up for me. She said quite frankly, "They should be facilitating that for you." 

Surprisingly, in the middle of that phone call, the cardio-oncologist's office called me. That was quick! I took that call, and explained the whole situation again to the nurse. She was very sympathetic, could hear that I was getting emotional and tearing up, and she said she'd talk to the cardiologist and get back to me.

I called the oncology nurse back just to update her on that phone call. She said it sounds like I did a good job advocating for myself. We'll see if the cardiologist's office calls me back tonight, and either way, I should call the oncology nurse again tomorrow morning with another update.

At this point, I left the house to pick up my son from school. When I got back, there was no message from the cardiologist's office, so I decided to call my PCP's office and let them know I do need their help getting an appointment! I explained the entire situation again to the person who answered the phone, and she said she'd talk to the doctor about it. 

Incredibly, the cardiology nurse did call me back! Just before the end of the work day. She said my regular cardiologist doesn't have any openings, but she made an appointment for me at the "cardiology clinic", like an urgent care clinic just for cardiology. Thankfully, the appointment time does not interfere with the pre-surgery covid testing I'm supposed to get tomorrow morning, but I'll have to drive to the main hospital in the city. I'm nervous that there will actually be a problem and I won't get cleared for surgery, but at least I have an appointment. I thanked the nurse profusely! She was so kind and patient, she even said, "Everything will work out, I hope this helps to reduce your stress." So compassionate of her to say!

I am slowly starting to brace myself for the possibility that I will need to postpone my surgery. I really hope that doesn't happen because I've already been laying low for about a week now, to reduce my risk of covid exposure, and I just don't want to have to do all this surgery planning again, coordinating among oncology, GYN, PCP, cardiology, and the hospital!! GAH!!!

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. 

6/6/22: The Cancer Center Called Me

The friendly medical assistant / receptionist who always greets me warmly called me today. She's actually the person I left a message with regarding needing "medical clearance" for my surgery. She wanted to know if I need a new EKG for the "medical clearance", or if my most recent one would suffice. I had no idea!

I realized I have no point person at the hospital where I'll be getting my surgery. I called their main number, explained my situation to the receptionist, and she connected me to the Pre-Admissions Testing person. That person listened patiently and then explained that an EKG performed within the last year is standard procedure when anesthesia will be used in surgery. So, I guess I need another one.

I called the Cancer Center back, and the same medical assistant / receptionist said she'll have the doctor put in an order for an EKG, which can be done at my already-scheduled appointment with the medical oncology NP. I was just glad I don't have to go in for a separate visit.

I found all this a little interesting because I'm pretty sure I did not get an EKG before my double mastectomy surgery. Turns out, there's wide variability in regards to which tests are performed pre-surgery, and many of them may be unnecessary. Since my double mastectomy was performed at a different hospital, I'll just assume the different hospitals have different procedures.

6/3/22: Pre-Operative Phone Call

Mostly this phone call was about reviewing my medical history. The nurse asked me a bunch of yes/no questions about my health.

She gave me a few instructions on where to report and what to expect on the day of surgery. She also said I should expect another phone call the day before surgery with final instructions, like food and drink restrictions. 

Disappointingly, she said no outside masks are allowed in the hospital, so when I check in, I'll be given a new surgical mask. The fact that I will be required to swap out my high-quality KF94 mask for a lower quality surgical mask is unfortunate but not surprising, as I have heard this to be the policy in many, many hospitals. Maybe I should feel lucky that all my other appointments up until now have allowed me to wear a KF94.

Interestingly, she asked if I'll be seeing my doctor before the surgery, because apparently I need "medical clearance". I don't have a PCP appointment scheduled, but I do happen to have a regularly scheduled appointment with my medical oncology NP. She told me to call the NP's office and let them know I'll need "medical clearance" from this appointment. I have no idea what this "medical clearance" is but I just followed instructions and called the Cancer Center and left a message.

Finally, I'm not supposed to take any vitamins for 7 days before surgery. This is not a big deal at all, but I just didn't realize taking vitamins would matter.

6/2/22: The Hospital Called Me

The hospital where I'm getting my BSO (bilateral salpingo-oophorectomy) is not the hospital I usually go to. It's the same hospital network, but a different location a little farther away. It's also not where my OB/GYN surgeon's practice is located, but the hospital she's affiliated with. I feel kind of like I'm driving all over the state. 

Anyway, a super nice person called to set up some appointments. I can't stress enough how much I appreciate people who are nice on the phone, people who are patient and friendly, who speak clearly and don't rush to get through the call as quickly as possible. 

She scheduled a pre-surgery phone call for tomorrow, and a COVID-19 test for a couple days before the surgery. I kind of appreciate the COVID-19 test being done at the hospital, because it'll give me a chance to drive there before the day of surgery, so I'll know the route.

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. 

4/28/22: OB/GYN Office Called Me

My regular OB/GYN no longer performs surgeries, so I had to be referred to another office. I was afraid I'd have to drive to the main hospital in the city, but luckily there is another satellite office, just a little bit farther than my usual one. That office called me today, and I was so pleased with how friendly and helpful the caller was!

She was able to get me a surgery consultation appointment for tomorrow. I think there just happened to be a cancellation.

4/26/22: Medical Oncology NP Phone Appointment - I Need an Oophorectomy

Today's phone appointment was a follow-up to see how I'm doing on the anastrozole. I had printed out my list of side effects, but I ended up not mentioning the coughing and increased mucus. It's allergy season, after all, and it might not really be a side effect. 

Mostly, the bottom line is, I have a lot of side effects, but it's all manageable, and none of it limits my activities. My joint stiffness and hot flashes are worse than on Tamoxifen, but better than on exemestane. The dizziness is weird, but I haven't felt it in a couple weeks now. My NP said it's common for lots of side effects to develop around 2-8 weeks after starting a new medication, and then start to settle down after about 3 months, as the body adjusts. She also brought up vaginal dryness, which I hadn't really noticed except maybe some itching, which she said was actually a common symptom; she said she'd send me a list of products that can help. 

I thought that was it, the start of a potential stretch of stable, uneventful cancer care, but then she said, "Did you see your latest estradiol number?"

Ugh. I've been so focused on my LFTs that I totally forgot to check the estradiol from my last blood draw!

Turns out, my estradiol was 15. To be considered post-menopausal, which I need to be in order to take anastrozole, the estradiol should be <5. 

My NP said my medical oncologist already conferred with other oncology colleagues, and they agreed this is unusual. Their only guess is that the Lupron must not be working, but nobody knows why not. The point of the Lupron is to eliminate estrogen production by suppressing the ovaries, and since Lupron isn't doing it well enough, the consensus was to recommend I remove my ovaries. My NP will do some coordinating behind the scenes, and then she's supposed to call me back with next steps.

Incidentally, I mentioned that I never did hear from my hepatologist after seeing my FibroScan results online. I said I'm not really worried because I have an appointment scheduled this summer, but she said she'd check in with him to see if there's anything I should know before then. I appreciate her helping me out, even though hepatology isn't her department. 

To help me wrap my own head around everything, here's the whole hormone therapy / oophorectomy history:

• Fall 2019: My genetic testing showed I have 2 VUSes: one in BRCA2, which is linked to ovarian cancer, and one in PALB2, which may be linked to ovarian cancer. My oncologist did not recommend removing ovaries to prevent ovarian cancer, but my OB/GYN thought it was a viable option for multiple reasons: 1) to prevent ovarian cancer, 2) as birth control, and 3) to eliminate the need for monthly Lupron shots. At this time, an oophorectomy didn't seem necessary, so I didn't pursue it.
  
  
• 2020: Because my cancer was estrogen receptor positive, I needed hormone therapy to eliminate estrogen in my body. I got monthly Lupron shots (to suppress estrogen production in my ovaries) and was prescribed exemestane (a daily pill for post-menopausal women to block estrogen production in other parts of the body). The Lupron put me in a chemically-induced menopause, which allowed me to take exemestane.
  
  
• 2021: A couple blood tests showed my estradiol to be too high; my oncologist thought maybe the Lupron wasn't working as effectively since my ovaries started working again (after having temporarily stopped working during chemo). Since I couldn't be considered post-menopausal anymore, I switched from exemestane to Tamoxifen (a daily pill for pre-menopausal women to block the effects of estrogen on breast cancer cells), while still continuing with Lupron. 
  
  
• 2022: After a year of Tamoxifen, I developed non-alcoholic fatty liver disease. My oncologist took me off Tamoxifen and switched me to anastrozole (the same type of pill as exemestane, just a different drug). Since anastrozole can only be taken post-menopause, my estradiol would be monitored to make sure the Lupron is keeping it <5. My last blood test showed estradiol was 15, so the Lupron is not totally working, which means I can't be considered post-menopausal. The only pre-menopausal hormone therapy pill is Tamoxifen, which we already ruled out as an option. Now, having pretty much exhausted all other options, the only way to sufficiently eliminate estrogen production is to have an oophorectomy. 

3/29/22: The Cancer Center Called Me

It felt kind of random. A person I didn't recognize said my usual medical oncology NP had asked her to call me to let me know about my blood work results (which I already saw online). She said my estradiol number is low, as expected, and that my LFTs (liver function tests) are "bouncing around" and were sent to my hepatologist. The blood work was done 11 days ago, and I didn't expect any follow-up, so I guess it's just nice to know that someone is still checking up on me. 

Although, she did not say anything about my bone density test results, and I did expect a follow-up for that. I had forgotten all about it and didn't think of it myself until after the phone call ended, otherwise I would have mentioned it. I guess there's not much to say about it anyway, since the report said "statistically nonsignificant change" from last time. 

Meanwhile, I still haven't heard from my hepatologist about my FibroScan results. I'm not really worried because I feel like I've gotten enough information online, though it would be nice to know his thoughts on what "severe steatosis" means for me.