7/31/20: I Called the Cancer Center

At my cousin's suggestion, I called the Cancer Center to ask about my echocardiogram results. I'm definitely a bit worried, and it would bring peace of mind just to know what's in store, instead of wondering about it until my next appointment.

My medical oncologist doesn't work on Fridays, and my oncology NP happened to leave early today. So a different oncology NP called me back. She said usually 55% is the threshold for worrying about the ejection fraction; 53% isn't too much below 55%, but my ejection fraction has trended downward since my first echocardiogram. Sometimes they will refer the patient to a cardio-oncologist, and sometimes the Herceptin treatment will be disrupted. She said she doesn't know how my medical oncologist will want to proceed, so she'll put in a message to her, and someone will get back to me.

7/30/20: Echocardiogram Results

At today's physical therapy appointment, my therapist asked how my latest echocardiogram looked. I realized I had forgotten to look for my results online, and now I wish I had known the results at the appointment, so I could have asked my therapist what they mean.

I got the echocardiogram report from the online patient portal. My ejection fraction is now 53%. The report says a number between 54% and 73% is normal. 

I made a post asking for information in a couple of the Facebook support groups. Most everyone said 50% was the cut-off for the normal range, which is also what I found online. Several women said that when their ejection fraction got too low (in some cases as soon as they hit 50%, but one woman went as low as 41%), they were referred to a cardiologist, who prescribed medication. Some had to take a break from Herceptin until their ejection fraction improved. Others were able to continue Herceptin treatment while taking the medication. It sounds like the ejection fraction can eventually return to normal, though it might take a few months or a year, and then the medication can be stopped. 

One person said that the 50% number wasn't as important as the change from baseline, and that a difference of 10% was the threshold for concern. By that measure, I'm right at the borderline, since my first echocardiogram had an ejection fraction of 63%. Another person said her medical oncologist said a difference of up to 15% was tolerable.

The idea of stopping treatment is discouraging because I'd like to know that I've done everything I can to reduce my chances of recurrence. Interestingly, someone pointed me to a recent study that showed that 6 months of Herceptin is pretty much just as effective as 1 year of Herceptin. It's definitely reassuring. I've already had 10 months of treatment, so I think I won't feel too bad if I have to stop early.

A couple people suggested that addressing a low ejection fraction would be more urgent if I was symptomatic. It hadn't even occcured to me that I might have related symptoms. I found a list of symptoms online, and I don't think I have any of them, except maybe possible swelling in my feet, but that could also be from hormone therapy.

I want to discuss my echocardiogram results with my medical oncologist, to see if my ejection fraction will affect my Herceptin treatment, but my next appointment isn't until my last scheduled infusion! I have a Lupron appointment next week, though, so I'll ask my nurse about it. Part of me figures, if there's anything to worry about, surely my oncologist, or the NP, would give me a call.

7/30/20: Physical Therapy Appointment #21

My physical therapist spent almost a full hour with me today. 

She did a whole bunch of tests on my wrists, arms, and neck to try to learn more about the numbness and tingling in my fingers. Nothing in my neck seemed to cause any trouble, and she conceded that maybe the MRI isn't needed just yet. 

She was pretty confident that the problem is my median nerve, leading to some kind of carpal tunnel syndrome. 

I guess the big question is what is causing the carpal tunnel syndrome. At first, she still seemed to think there might be a musculoskeletal explanation, partly because the symptoms are symmetric. Also, I get intermittent tingling in my toes. It could be related to Herceptin, or Taxol. One possibility that seemed to make the most sense to me is the old idea of swelling; maybe the hormone therapy is causing fluid retention, which is squeezing some nerves in both my hands and feet. My hands and feet do look a bit puffy, but when the physical therapist actually measured my arms, they were not swollen compared to my previous measurements. 

She apologized for not being able to pinpoint the root problem. I appreciated her efforts, and completely understand the difficulty. I have so many medications and treatments, it's impossible to definitively link one thing to another! 

Anyway, she advised me to do a median nerve glide and two upper body stretches. I didn't schedule another physical therapy appointment; I figure I'll see how these exercises go, and I can always call if things get worse.

7/27/20: Echocardiogram

The coronavirus protocols were less stringent than last time. I was able to go directly to the cardiology department, and the waiting room was open, though some of the chairs were taped off to ensure proper distancing while seated. 

It was a quick visit, the procedure itself taking only 10-15 minutes. 

7/24/20: Maintenance Herceptin #11 + Medical Oncology NP Appointment

After the port nurse accessed my port, and before I went upstairs for my infusion, I met with a medical oncology NP. My oncology appointments now alternate between the doctor and the NP, and this was my first time meeting the NP. She was great, like everyone else I've met at the Cancer Center.

We went through the whole history of the numbness and tingling in my hands. The symptoms have been at baseline since the beginning of June, and since they're not disrupting my daily activities anymore, there's no sense of urgency to get an MRI. The NP decided to wait, and to have me see the physical therapist in person first. If the physical therapist still thinks I need an MRI, maybe they'll order it then. I don't have a strong feeling one way or the other about it at this point. 

As instructed by my PCP, I asked if I should get a colonoscopy before age 50. The NP seemed surprised by the question, and said no, they do not usually recommend early colonoscopy for breast cancer patients. 

I also asked her opinion about getting my ovaries out. Based on the genetic counselor's advice, I should feel fine about not getting them out. I guess I'm just curious to know if anyone has any thoughts or information that I haven't considered. Anyway, she said she understands how complicated the question is, but she isn't very knowledgable about this particular issue, and would defer to the medical oncologist.

After the NP appointment, I went upstairs for my Herceptin treatment. When the infusion was finished, and the infusion nurse took off the dressing on the port to de-access it, I asked her to take a closer look at my port incision; lately I've noticed two little dots, and a tiny black shadow between them, on the incision scar. I think it's a tiny stitch! Not the dissolvable kind, either; it looks like the regular kind that was used for my re-stitch. The infusion nurse agreed, and said maybe it's working its way out. She put some antibiotic ointment on it, and a bandaid. I guess we'll see if it comes out. I figure, they can always take it out when I get my port out. I just don't want it to get infected or anything in the meantime.  

Today's appointment took about 3 hours total. Back at home, I checked my blood work online, and my vitamin D levels are back to normal! I'm taking a daily supplement of 2000 IU, and it's good to know for sure that it's working. 

7/17/20: I Checked My Insurance Claims Online

It's always a shock to see how much my cancer treatment costs. The tally has officially crossed $300,000. Thank goodness we have insurance. I supported universal healthcare even before being diagnosed, but now I'm all the more adamant about Medicare For All.

These are the claims our insurance company paid out. We already met our deductible for this coverage year, so there was no cost to us.

5/15/20: Lupron: $571.16
5/20/20: Maintenance Herceptin #8 (Including Blood Draw, Medical Oncologist Appointment): $15,226.64
6/12/20: Maintenance Herceptin #9 + Lupron: $15,692.80
6/25/20: NP Appointment: $260.00
7/1/20: Exemestane: $1,499.99

Total cost to date: $324,285.15
With insurance, cost to me: $4,254.63

7/16/20: I Spoke with a Genetic Counselor

I remembered my genetic counselor saying that I should check in with her from time to time to see if there is any new information on my VUS-es. I called her yesterday and left a message. Today someone else called me back. My original genetic counselor had moved away.

She said calling them for an update about once a year is exactly what I should do. They are supposed to notify patients if there is any new information regarding VUS-es, but it's still good for me to call them, to make sure I don't fall through the cracks.

She said she already ran my genetic testing results through the database, and there was no new information to shed any more light on my VUS-es. Oh, well. 

The reason I'm still interested is because if a VUS turned out to be a known mutation linked to breast or ovarian cancer, then I'd likely elect to get my ovaries out. But if it turned out to be a harmless variance, then I would feel better about not getting the surgery. As long as the mutations have "unknown significance," I'm on the fence.

The genetic counselor reminded me again that it's not recommended to make medical decisions based on VUS-es. She explained that really, there is no way to know which way the VUS might go, especially because I'm not white. The genetic database consists mostly of cancer patients in the U.S. who have opted for genetic testing, and most of those people are white, so the database doesn't even have a lot of data on variations in ethnic minorities. 

While I had her on the phone, we updated her record of my family tree with information I learned over the last year. She suggested asking family members to get tested, especially my father and my aunt who is a breast cancer survivor; their testing results would provide a fuller picture of the hereditary genetics. Interestingly, she said they wouldn't even have to go in for a blood test; the hospital can send them saliva kits, and they'd just have to mail back the samples.

7/15/20: PCP Appointment (Annual Physical)

Today's visit was kind of weird with all the coronavirus precautions; they were much more extensive than at the Cancer Center. I think they did a really good job, but could work on their coordination a bit.

This was my first time seeing my PCP since being diagnosed, and I guess sort of hoped for more personal attention. Not necessarily sympathy, but she did not ask me about my cancer treatment or mental health at all. Everything felt perfunctory and rushed, like she was just trying to get patients in and out as fast as possible; that would explain the physical exam part of the visit, but even the phone call portion felt hurried.

The medical history part of the exam was done over the phone, while I sat in my car in the parking lot in front of the medical office. By now, I've had a couple virtual appointments for my kids and myself, and each time, the provider called at exactly the scheduled time. Today, my PCP called over 10 minutes early. I was still driving, so I didn't pick up, and she called back every 1-2 minutes. Once parked, I answered her 3rd call, which was still well before the 8:40 start time.

First, she went over medications and allergies. She started out by confirming that I have no allergies, but I quickly corrected her and told her about the chlorhexidine. This oversight annoyed me because 2 days ago, the provider's office texted me with an online form to update my medical history; I spent 10-15 minutes entering in all my information, including the chlorhexidine allergy. Apparently, all that effort was for nothing, because she also did not know about my updated medication list.

I asked for her thoughts on whether or not I should get my ovaries removed. She gave me some general advice about weighing risks and benefits, and also talked about osteoporosis being a serious risk. Then she said that if it were her, personally, she would get the surgery, figuring the benefit of reducing ovarian cancer would outweigh the risk of osteoporosis. I did mention that my risk of ovarian cancer is still unknown, and that the genetic specialist said that VUS-es should not drive medical decisions, but she seemed to be in the "a VUS could just as well indicate a higher risk of ovarian cancer as not" camp. I also described the possible medical risks, and she suggested talking with a gynecologic oncologist, who would be more knowledgeable about up-to-date research. It's a good idea, and I'll keep it in mind.

I also thought it would be prudent to let her know what's going on with my hands. She readily attributed my symptoms to medication side effects. When I told her that my medical oncologist and physical therapist are recommending an MRI, she suggested I see a neurologist.

She also told me to be sure to ask my oncologist if I should get a colonoscopy before age 50. Other than the gynecological cancers related to my genetic testing, I hadn't given any thought at all to other second cancers. I'll be sure to add it to my list of questions for my next medical oncology appointment.

Finally, my PCP asked a physician's assistant student who was also on the line whether or not there was anything we forgot. The student pointed out that we hadn't talked about mammograms. I immediately thought of the many posts I've seen on Facebook support groups from women who are now flat feeling upset or angry when their doctors reminded them to get mammograms. I'm glad I had a heads-up to expect this kind of thing. Given the apparent lack of updated information in my medical file - or the lack of attention given to information in my file - I wasn't surprised when it happened. In fact, I think I was bemused! I calmly explained that I don't need mammograms anymore because I had gotten a double mastectomy with no reconstruction. I'm sure if I were the student, I'd have been mortified, so I tried to be nice about it.

Before hanging up, my PCP told me to put on my mask and wait at the main entrance for someone to let me in. Someone had called while I was on the phone with the doctor, so while waiting to go in, I checked my messages. Oddly, it was a rather impatient person calling from the lab, saying, "You can come on in, and you better hurry, it's already 8:45 and I have another patient at 9:00." Shouldn't the doctor and the lab technician have coordinated?

A medical assistant walked me from the main entrance directly to the exam room. The waiting room was not in use, and the medical assistant opened all doors, so I didn't have to touch them. She took my vitals, and I barely had time to change into the gown when the doctor knocked to come in. She apologized for all the hassle, but I said it was great, they are clearly taking all possible precautions. I told her about the message I received from the lab, thinking it could help them to improve their services, but all she said was, "I don't know anything about that." Oh, well!

She gave me a quick physical and was in and out in a matter of minutes. Instead of going to the lab to get my blood drawn, the lab technician came to the exam room. I don't know if it was the same person who called, but the person who drew my blood was perfectly friendly. Afterwards, the medical assistant came back to escort me out of the building using a different exit than the main entrance I used coming in.

A few hours later, I got a phone call to schedule an appointment with a neurologist; they were following up on a referral from my PCP. I told them I'm not ready to make an appointment yet, but I got the doctor's name and phone number, for future reference. I figure I'll see how things go with the MRI first.

7/10/20: Lupron

Driving to and from today's appointment, I was discouraged to see the low rate of mask wearing in front of stores, on the sidewalks, and in the parks. (My state has an order to wear masks in indoor and outdoor public spaces where social distancing is not possible.) Compared to a couple months ago, there were more people out and about, and fewer people wearing masks. Everyone thinks we're okay because our numbers are flat, but with people not taking precautions, I'm nervous about a resurgence.

For some reason, the Cancer Center was extra busy today. The parking lot was unusually full, and there was a line to check in.

My nurse today was one I've had before, but not often. She called me in from the waiting area, instead of the medical assistant, and took my vitals. Maybe having me see only one person was an effort to minimize patient interactions among the staff.

I was pleasantly surprised that even though she's not my usual infusion nurse, she seemed up-to-date on my hand symptoms. She knew about my physical therapist appointment yesterday, and confirmed that I should expect an MRI to be sheduled soon.

She also mentioned that she is a breast cancer survivor, too, and that she has the exact same symptoms - numbness and tingling in the tips of her thumb, pointer, and middle fingers!! She attributed her symptoms to Taxol, which she finished about 2 years ago. She said her symptoms have gotten better over time, but they're still there. I asked her if she ever had Herceptin (she didn't), but I didn't ask if she had surgery or hormone therapy. She didn't at all imply that my problem might be the same, but it's always reassuring to hear that I'm not alone with these symptoms.

The whole visit was a very efficient 15 minutes.

7/9/20: Physical Therapy Virtual Appointment #20

My physical therapist called on Monday about scheduling a virtual appointment, but she called my cell phone, which I don't always keep at arm's length, so I missed the call.

I called the Cancer Center on Wednesday, and the scheduler said the physical therapist is doing both virtual and in-person visits. But she's not seeing patients on Fridays, the day I usually go in for treatments. I'm still wary when it comes to the coronavirus, plus I figured, I don't have any urgent concerns, so I decided to schedule a virtual visit.

The virtual appointment was today, and we spoke on the phone for 30 minutes. I told her about my current baseline: I wear wrist braces to sleep every night, and my thumb, pointer, and middle fingers are mildly numb and tingly all the time, but don't disrupt my daily activities. I also described the painful flare-ups that led me to take a break from basically everything.

She asked me a bunch of questions along the lines of: Am I getting headaches? Do I have any pain in my shoulders? Do my arms feel tired? Do I have symptoms in my legs or feet?

After all that, she was very confident in saying that she would like me to get an MRI. She said that symptoms that are side effects of medication usually do not change with a person's activities, so the fact that lying down on my back seems to be a trigger for making numbness and tingling worse is an indication of a non-medication-related problem. (My medical oncologist said the same when she first proposed the MRI.) She also thought that the symmetry of my symptoms, and the existence of some numbness and tingling in my toes, suggested something going on in my neck. If we had had an in-person visit, she would have performed some physical tests on my neck, and even then, she still would have wanted an MRI so that we could have all the pieces of the puzzle. Ideally, an MRI will either confirm or rule out a neck problem.

As for why I might be experiencing neck problems, she explained how my double mastectomy resulted in major changes to my chest wall that ultimately affected my chest, shoulder, and neck muscles, which are all interconnected.

I told her how I had been leaning towards not getting an MRI until after my Herceptin treatment ends, in case Herceptin is causing some of the symptoms, but she said not to wait. If the problem is not Herceptin, the sooner it's treated the better; if the problem is nerve-related, letting it go unaddressed now might make it harder to treat later.

She said she would email my medical team about scheduling me for an MRI. Then I can schedule an in-person appointment with her after we have the MRI results.

As always, I really appreciated my physical therapist's insights. Getting her professional opinion felt very reassuring.

7/2/20: Maintenance Herceptin #10

Today's appointment was an efficient 1.5 hours.

It was a smooth visit, nothing new or unexpected. The port nurse accessed my port, the medical assistant took my vitals, the infusion nurse administered my Herceptin.

For once, I didn't have any questions, or anything new to report.