9/13/24: Cost Update

Our high-deductible health plan runs from July to June, which means our deductible gets re-set on July 1. So far, it seems like I (along with the rest of my family) have enough medical appointments that we reach our deductible late in the coverage year, which means finally in June some appointments are 100% covered by insurance! And then we start all over again, paying a lot for appointments starting in July.

Here are the latest numbers, including the amount billed (which I add to the "total cost") and the amount I had to pay after insurance processed the claim (which I add to the "cost to me").

10/23/23: Anastrozole (generic): $545.99 (Covered by insurance)
1/11/24: BreastCare NP Appointment: $221.00 (I paid $195.29)
2/1/24: Anastrozole (generic): $545.99 (Covered by insurance)
4/27/24: Anastrozole (generic): $545.99 (Covered by insurance)
6/4/24: Medical Oncology NP Appointment: $221.00 (Covered by insurance)
6/4/24: Medical Oncology NP Hospital: $134.00 (Covered by insurance)
6/25/24: Cardiologist Appointment: $326.00 (Covered by insurance)
6/25/24: Cardiologist Hospital + EKG: $586.36 (Covered by insurance)
7/26/24: Anastrozole (generic): $545.99 (Covered by insurance)
8/14/24: Bone Density Radiologist: $44.00 (I paid $24.30)
8/14/24: Bone Density Hospital: $764.00 (I paid $304.90)
8/21/24: Echocardiogram Cardiologist: $230.00 (I paid $175.39)
8/21/24: Echocardiogram Hospital: $1,494.00 (I paid $1,348.20)

Total cost to date: $477,691.38
With insurance, cost to me: $16,908.63

1/11/24: Final NP Appointment

Today was my last yearly follow-up in the Breast Center. I was diagnosed in 2019, and they follow patients for 5 years following diagnosis.

The appointment took all of 5-10 minutes. The NP did a breast exam and thankfully didn't find anything. She asked about my side effects from anastrozole, and also about the latest developments in my genetic testing situation. Just like in previous years, I was impressed that she had clearly reviewed my medical records beforehand.

She started to wrap up the appointment and didn't even mention that this would be my last one. I made sure to confirm that I wouldn't have any more follow-ups, and she said very nonchalantly that I should call if I have any concerns. That's it. It was all rather unceremonious.

It's interesting that I used to feel anxious at the idea of not having regular follow-ups, but now that the time has come, it does feel good to move forward. I do still have my oncology appointments, so I'm not totally on my own yet.

Tangentially, this appointment brought up some thoughts on covid. Following national trends, my area is just now coming down from the 2nd highest surge after the Omicron peak. My hospital's current mask policy requires staff to wear masks when in patient rooms, but not elsewhere, and patients and visitors do not need to wear masks. Since we know that covid is airborne, this mask policy is performative at best. During my visit today, the receptionist who checked me in was not masked, but did require me to use the hand sanitizer. My medical assistant who took my vitals and the NP were both masked, per hospital policy. But out of the scores of people I saw while walking through the hospital to the Breast Center, only a handful of staff were masked, and literally half of them wore their mask below their nose. I saw only 2 other patients in masks, and both, like me, were in high-quality masks. If you know, you know. 

As it turns out, no one ever asks me why I still take covid precautions (e.g., avoiding crowded spaces, masking in public, rapid testing for everyone before unmasked small indoor gatherings, opening windows to improve ventilation, and using HEPA air purifiers). For the record, it's partly because of my medical history and not wanting to risk having complications. Also, it's partly because the one time I did get covid, it was dreadful and highly disruptive, so worth not repeating. Another major factor, though, is wanting to prevent long covid. The risk of long covid (which includes a laundry list of possible symptoms and conditions) is about 10%, though new studies are coming out all the time; vaccinations decrease the risk, but repeat infections increase the risk. I think most people figure, "It won't happen to me," but as someone who got completely blind-sided by breast cancer, I now lean more towards, "It could happen to me." And as someone who knows what it means to have a chronic illness -- how it requires an immense amount of time, energy, and money to manage (e.g., researching conditions, finding specialists, scheduling and going to appointments, working out insurance issues, paying lots of medical bills, etc.) on top of dealing with the actual symptoms, and how all of that can be incredibly disruptive for an entire household -- I'm willing to take steps to do what I can to lower my risk and preserve what normalcy I have left, and the best way to prevent long covid is to not get covid in the first place.

5/20/23: Cost Update

I actually haven't checked my insurance claims online lately, I guess because my appointments are fewer and less frequent these days. But here are some old costs that I hadn't posted yet.

Our health insurance coverage year starts on July 1, re-setting the deductible, so all these appointments starting last summer required out-of-pocket payments. We have a high deductible health plan, and since my cancer-related appointments have been tapering off, I wonder if we'll even meet the deductible this year. 

I thought it was particularly ridiculous that there was a hospital facility charge for the phone appointment with my hepatologist, but at least I didn't have to actually pay anything.

7/12/22: GYN Surgeon Appointment: $192.00 (I paid $140.02)
8/5/22: Anastrozole (generic): $545.99 (No cost to me)
8/16/22: Blood Work for Hepatology Appointment: $113.00 (I paid $64.28)
8/24/22: Hepatologist Phone Appointment: $260.00 (I paid $260.00)
8/24/22: Hepatologist Phone Hospital: $105.00 (No cost to me)
11/3/22: Anastrozole (generic): $545.99 (No cost to me)
11/10/22: Medical Oncologist Appointment: $326.00 (I paid $316.30)
11/10/22: Medical Oncologist Hospital + EKG: $889.00 (I paid $450.73)
11/10/22: EKG Technician: $27.00 (I paid $20.25)
1/9/23: BreastCare NP Appointment: $221.00 (I paid $190.72)

Total cost to date: $464,025.21
With insurance, cost to me: $11,649.99

1/9/23: NP Appointment

Today's appointment was my annual check-in with the Breast Center.

I think it took all of 5 minutes! Maybe 8. Definitely not 10.

I was impressed, again, that my NP had read enough of my file to know that I had switched from Tamoxifen to anastrozole. We talked briefly about that, which led me to mention my oophorectomy in June, which she had not seen in my records, for whatever reason. She said she hadn't ever heard of Lupron not working, and I said my oncologist had given me the same impression, since she had called it "a little weird" and couldn't explain it. 

After going over everything that happened last year, she said she hoped everything else is going well. I said yes, other than getting covid over Christmas! I didn't expound upon my covid illness, I just said I'm better now, and optimistic that my medical situation might finally become stable.

She did a clinical breast exam, and said my double mastectomy scars are healing really well, specifically mentioning that the "dog ears" (the extra skin at the outer ends of each scar) look better, i.e., smaller. I said I do think my scars are less bumpy than before, especially around the dog ears, and she said that probably means there's less scar tissue. She asked if I massage the area, because that would help. I said I don't do it on purpose to help the scars, but my underarms still frequently feel numb and tingly and tight (particularly on the right side), so I do now have this funny habit of rubbing the area any time I'm just sitting around watching TV or using the computer. She joked how my kids are probably like, "Oh, that's just mom, rubbing her armpits again!" Haha. Apparently, though, all that rubbing is good for healing, so great!

I was relieved when she said everything looked fine. I wasn't anticipating any problems, but there's always that small part that is fearful of recurrence. 

She said I'll have one more appointment with her in a year, and then that'll be the end of my 5 years of post-diagnosis follow-ups! I honestly can't believe it's almost been 5 years... It sounds like a long time, but it feels too short because so much has happened and I can't believe my surveillance window is close to ending. Again, I didn't ask what happens after that; I suspect they will cut me loose, and I hope that by the time next year rolls around, I'll feel ready for that step.

Throughout the appointment, I think I spoke very matter-of-factly about everything, which perhaps gave the NP the impression that I accept and understand the whole of my situation. I think I do, and I never really considered that that might be unusual. I can't remember her words verbatim now, but the last thing she said to me was something like, "Well, you definitely have a good attitude, and that's, like, 99% of doing better." I'm assuming she used the "99%" number metaphorically, but I was immediately struck by how much that one sentence echoed the message in the book I just read!

1/6/22: NP Appointment

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

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

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

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

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

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

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

1/7/21: NP Appointment

Today's appointment was a routine follow-up with my NP in the Breast Center. I don't get any regular imaging to look for cancer recurrence, just these physical breast exams.

I had forgotten how thorough my last appointment was, so I was pleasantly surprised when she asked me how all my various side effects and treatments are going. I told her about my recent spotting and upcoming pelvic ultrasound, and she seemed to think I will most likely still be able to continue with Lupron. I couldn't tell if she was basing that on experience and what she's seen in patients, or if she was just trying to be encouraging because I said I wasn't excited about potentially having to get my ovaries out. 

During the physical exam, I was happy to hear her say that my DMX incisions look good. She asked if I'm using anything on them to reduce the scarring, and I said no, because I don't really care how they look since no one sees them but me. I asked if I should be using any products for healing purposes, but she said no, only for aesthetic reasons. I told her I am using Mederma on my port scar, and she said the port scar is always worse than the mastectomy scars! She said she sees it all the time and doesn't understand why. I said, only half-jokingly, that maybe my breast surgeon is just that much more skilled than the port installation/removal surgeons. 

She also mentioned that if I ever feel uncomfortable with my dog ears, I can have them removed with revision surgery. My dog ears are pretty small, they're a bit of extra skin at the end of my mastectomy scars, under my armpits, that pucker out a little. They're annoying, but relatively minor, and I'm okay just living with them, at least for now.  

It was something of a relief to have a medical appointment that went so smoothly, with no new or on-going issues to manage. My next NP appointment in the Breast Center will be in a year, the longest stretch I'll have had between appointments. I think it's noteworthy that at this point, I do feel comfortable with yearly appointments; that "baby bird" feeling is subsiding, and in its place, I'm feeling an increasing eagerness to get to a point where I just have a stable schedule of routine appointments without any new concerns.

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

6/25/20: NP Appointment

Today I had my "6-month" surgery follow-up. It was originally supposed to be in March but was re-scheduled due to the coronavirus.

Unlike at the Cancer Center, I didn't get a pre-screening phone call in advance. When I arrived at the hospital, a check-in desk was set up just inside the main entrance. I was given a slip of paper with instructions to call the Breast Center from my car. The waiting room isn't open yet, so they're only letting in patients when exam rooms are ready. I went back to my car to call the number. They asked me some COVID-19 screening questions, then said I could come in.

Re-entering the building, the check-in desk had me sanitize my hands before heading to the Breast Center. Masks were required at all times, but they didn't ask me to swap out my cloth mask for a surgical mask, as the Cancer Center does. In the halls, any place where people were likely to line up, new markers on the floor showed where people should stand in order to maintain distance. Checking in for my appointment, new pexiglass dividers were installed in the reception area, and they had me verbally give consent for treatment instead of signing a form. A medical assistant brought me directly to an exam room and took my vitals. 

I was pleasantly surprised when the NP asked me about all aspects of my treatment, not just my recovery from surgery. She asked whether or not I was considering removing my ovaries instead getting the monthly Lupron injections. I have some reservations about getting an oophorectomy, and I'm hesitant to opt for an elective surgery. She said most women opt for the oophorectomy eventually, sometimes just to avoid having to come in for monthly appointments. Still, even though I have variants of unknown significance in genes linked to ovarian cancer, it's not advised to make medical decisions based on VUS-es, which is what my genetic counselor and my first medical oncologist had told me, too. She reassured me that I can continue to think about it and always make a decision later. She also suggested I ask my new medical oncologist, and the oncology NP, for their thoughts, too. 

I went through an overview of the symptoms in my hands. She agrees with my medical oncologist that the stiffness in my fingers is probably from the exemestane. She was just as perplexed about the numbness and tingling as everyone else. She seemed to think it's reasonable to wait and see how my hands feel after I finish Herceptin before investigating it too deeply. And she said she'd contact my physical therapist about scheduling an appointment for me when she starts seeing patients again, in case some physical therapy might help. 

I also mentioned that my arms get tired and sore more easily. When I hold a phone to my ear, the inside of my elbow, maybe even my bicep, starts to feel tight pretty quickly; I have to extend my arm for relief, and I end up switching the phone back and forth between my left and right hand. Also, things that I wouldn't have considered "heavy" before now feel heavy. She said my arm muscles have probably weakened from having to use them less while recovering from surgery. I remembered that my physical therapist was just starting to give me strengthening exercises when the pandemic hit, so that's another thing to bring up with her when I can get an appointment.

She finished the appointment with a physical exam, and said my scars are healing fine. I reported feeling patches of numbness and tingliness across my chest, and she said it's normal. She reminded me I can ask for a prescription for contoured prosthetics any time. 

At first she said my next follow-up appointment would be in 1 year, and in between I would see my medical oncologist, so that I'd see one or the other every 6 months. I think she saw right away that I was surprised at the schedule. Another baby bird leaving the nest feeling! She immediately offered to see me in 6 months, through the end of my Herceptin treatments, and I'd start with yearly visits after that. 

To minimize interactions due to the coronavirus, there was no check-out process, and someone is supposed to call me later to schedule my next appointment.

I hadn't seen my NP in so long, I left feeling pretty good knowing that she's another person on my medical team with whom I can discuss my treatment.

4/6/20: The Breast Center Called Me to Re-Schedule My Appointment

My "6-month" follow-up with my Breast Center NP was supposed to be in March, but had been re-scheduled to late April.

My state's stay-at-home advisory now extends through April, so I figured this appointment would get moved again. My new appointment is in July.

After the phone call, I got another email saying all appointments through April 25 are being re-scheduled.

3/16/20: I Re-Scheduled Some Appointments

During this COVID-19 pandemic, my state has closed all schools and banned all on-premise dining for restaurants and bars. There is a major push for social distancing, and as an introvert and homebody, I am happy to comply.

This upcoming Thursday, I was scheduled for a 6-month follow-up appointment with my NP in the Breast Center. I was planning on calling them to re-schedule, but even before I had a chance, they called me. They asked me to move my appointment out by at least 4 weeks, which is fine with me. Now it's in late April. 

When this appointment was first scheduled, I felt uneasy because 6 months seemed like a long time to wait to have a medical professional evaluate my post-surgery recovery. But now that it's been 6 months, and I've had my physical therapy appointments in the meantime, I think I'm in a stable place. I have no pressing questions or concerns. 

I decided, too, to re-schedule Friday's physical therapy appointment, which I also moved to late April. When this appointment was first scheduled, I was nervous about not seeing my physical therapist for a whole month. But now that the time has passed, I'm okay. I am relieved that my cording has continued to improve, so seeing my physical therapist doesn't feel necessary. Anyway, the point of the appointment was really just to check in, and to give me some new strengthening exercises. I'm comfortable just continuing with my walking, deep breathing, and stretching exercises for now. 

I also have 2 appointments that I did not cancel because they are time-sensitive. On Thursday I'm scheduled for an echocardiogram. I thought a lot about whether or not to re-schedule this appointment. I decided to keep it because the point of the echocardiogram is to make sure my heart is functioning properly while on Herceptin, and the results determine whether or not I should continue with Herceptin treatments. I am also keeping an appointment on Friday for both an Herceptin infusion and a Lupron shot, since those treatments should stay on schedule to be most effective. 

It does make me wonder under what circumstances the hospital might call to re-schedule those appointments... Interestingly, I did get a recorded message from the hospital, regarding my echocardiogram appointment, saying that no visitors other than patients themselves are allowed in unless medically necessary.  

Meanwhile, I've been doing a lot of research to try to figure out if I am in a "high-risk" category for COVID-19. I am NED, so there is no known cancer in me at this time. None of my medications are immunosuppressants. My immune system was compromised during chemo, but I finished that almost 3 months ago, and my blood work has already returned to normal. I did have a total of 6 lymph nodes removed, but that seems to be more of a concern regarding bacterial infections if the skin is broken on the side of the body from which lymph nodes were removed. In the Facebook support groups, though, a number of people insist that anyone with any history of cancer is immunocompromised... This article says people with a history of cancer "probably" do not have an increased risk, however, this study that analyzed COVID-19 patients in China says that patients with a history of cancer do have an increased risk. The study does not distinguish between different kinds of cancer, though, and I'm sure that must be factor. Still, I figure I should adopt an attitude of extreme caution, just in case.

9/13/19: (3 Weeks Post-DMX) Breast Surgeon Appointment

I had my post-operative follow-up appointment with my breast surgeon. Ken came with me. I am actually a little sad that this will probably be the last time I see this doctor. He is so calm and respectful and has a reassuring presence.

He looked at my incisions and said they are healing nicely. I asked him about the continued swelling and numbness - not visibly problematic, but I can feel them - and he said it was normal, to just give it time.

I told him I was still wearing the surgical bra and compression band at home (I didn't wear them to the appointment), and he said I could stop wearing them. Interestingly, even with no garments, my chest area still feels tight and constricted. I think it's what some people in the Facebook support groups call the "iron bra". I think the feeling is supposed to go away, though a few women have said the feeling lingers.

He asked me to raise my arms to the side, and my range of motion was limited enough that he referred me to physical therapy. I have my first appointment scheduled for next week.

I asked about getting a prescription for the contoured, custom-made prosthetics he mentioned at our first meeting. He said my NP can give me the prescription and information on how to fill it. I'm still not sure if I want them, so I'll just keep it in mind, just in case.

We also talked about my surgical pathology. As I already knew from my last NP appointment, he got clear surgical margins, and there was no evidence of cancer in my sentinel lymph nodes. I am so thankful for this man's surgical skills. He declared me tumor-free! I think this means I don't need radiation.

But, he said there was one "hiccup". My NP had already told me about the 4 mm tumor that was found in my left breast, but at the time, the HER2 status was still pending. The results came in, and this tumor was HER2-positive. Combined with being ER-positive and PR-positive, that means this cancer is triple positive. (My original two tumors were both HER2-negative.)

HER2-positive cancers are usually treated with Herceptin, which is commonly administered with chemotherapy. But, since the tumor is "tiny", chemotherapy is not clearly necessary. But, since I am considered young, that generally means the cancer was more aggressive, so chemotherapy might be recommended. Plus, being young and healthy, chemotherapy is not as risky as it would be if I were older or if I had other health issues. If I do get chemotherapy, it's possible I could get a lighter regimen. He said my case is squarely in a grey area. The tumor board will likely discuss my case next Wednesday, in time for my medical oncologist appointment on Thursday.

When my surgical pathology report came back "all clear," a lot of people assumed that was the end of my treatment. Why would I need chemotherapy, if the surgery removed all the cancer? I, too, had had this question. The answer is explained succinctly in this brief video (with transcript). Basically, cancer is a systemic disease. Tumors are localized symptoms, and surgery and radiation are localized treatment that specifically target tumors. Chemotherapy and hormone therapy are systemic, whole body treatments. Surgery is frequently just the first step of treatment.

Anyway, I'll have a 6-month follow-up appointment with my NP.

Since the surgery, I've been mostly focused on my physical recovery, and working a bit on my emotional well-being, but now I am quite anxious to know what my ongoing treatment will look like.

So, after this appointment, Ken and I went out for a really nice lunch at a new-to-us restaurant. It was my first time being flat out in public. I wore a poncho-like wrap that a good friend very thoughtfully gave me just the other day, knowing I am looking for new clothing options that will hide my flatness. As it turned out, in this wrap, I felt so comfortable in my flatness that I was more self-conscious about wearing uncharacteristically fashionable clothes. Hahaha.

9/5/19: (13 Days Post-DMX) NP Appointment - Drains Out + Pathology Results

Lots to report today!

When I called (two days ago) to make my appointment to get my drains out, the output was < 30 mL per drain per day for 2 consecutive days. After that, the output was < 20 mL per drain. I feel good about the drain output being even lower; I'm hoping it means I'll be less likely to develop a seroma.

Ken went with me to today's NP appointment. He had to drive me, plus I had a lot of questions, so I wanted him there to help make sure I asked everything on my list, and to be an extra set of ears to make sure I understood all the answers.

First off, getting the drains out didn't hurt at all, but I think that is mainly because my chest area is still numb! I didn't realize it before because I've generally avoided touching the areas around my scars, but as the nurse was cutting the sutures that held the drain tubing in place, I could only feel some slight pressure. The NP instructed me to take a deep breath, and she pulled the drain out during my long, slow exhale. I honestly felt nothing. Other people had warned me that it would feel "weird", and I'm sure it would have, if I could feel anything.

What was weird was how much tubing was inside me! It was like 10-12 inches on each side. Crazy.

I asked about the numbness, and the NP said it was normal. She said other patients sometimes reported feeling coming back in patches, first in one area, then another, etc. Maybe this is why I haven't felt much pain; any pain would be masked by the numbness!

I also asked about my range of motion, and whether or not I should be doing any arm exercises. She gave me 3 exercises to do, but emphasized that I am still in the "early" stages of recovery, so I have to be careful not to do too much just yet. (She said to expect recovery to take up to 6 weeks.) She said my current range of motion is about what would be expected, so it's too early to worry about physical therapy. If I don't see much improvement over the next few weeks, they can certainly refer me to physical therapy later.

She said I can start driving any time I feel comfortable, now that the drains are out. I think my arms are still weak, so I don't plan to drive any time soon. Definitely not this weekend. I'll see how I feel next week.

She also recommended I keep wearing the surgical bra and compression band at least through the weekend because the compression helps to prevent fluid from building up (which could lead to a seroma). Without the drains, any fluid that is produced now just gets reabsorbed into my body. After the weekend, I can gradually taper off the use of the bra and band as I feel comfortable.

I mentioned that my right underarm is more numb than my left, and the numbness extends down my arm almost to my elbow. She said it was too early to worry about lymphedema, and maybe my right side felt worse because I had more lymph nodes removed from that side.

So, our conversation naturally segued into my surgical pathology. I was pleasantly surprised when she said she had a copy of my pathology report for me! (Ever since I got the good news, I've been checking the online patient portal daily to see the actual report, but it hasn't been posted.)

I had 1 lymph node removed from my left side, and 5 lymph nodes removed from my right side (the side known to have cancer). No cancer was found in any of the lymph nodes.

The report indicated negative margins greater than 5 mm, which means no cancer cells were found within at least 5 mm of the outer edge of the removed tissue.

The left and right tissue specimens weighed about the same (within 2 grams of each other). I had wondered if more breast tissue was removed on my right side (which might explain my concavity), but the "depth" of the right specimen was actually 0.9 cm smaller than the "depth" of the left specimen. So I guess there's no obvious reason why my right side is a bit concave.

The surgical pathology report listed the size of my tumors as 14 mm and 10 mm. The cancer invaded the skin and involved the nipple.

I actually saved the most interesting piece of information for last. The pathology report also found cancer in my left breast!!! A tubular carcinoma, 4 mm. This tumor is probably what the MRI showed, the area that didn't show up on the mammogram or ultrasound, and that they wanted to biopsy (which I cancelled after I decided to get the double mastectomy no matter what). This certainly validates my decision to get a double mastectomy!!

So, ultimately, I had bilateral breast cancer. Both breasts affected, three tumors, all different types of cancer.

I'm just so glad and relieved that the surgery was successful, and all that cancer is out of me now.

Why I'm Not Getting Reconstruction

Here's another question I've been asked since sharing my news. Why have I chosen no reconstruction?

Again, this is a super personal decision. For some women, it's not even a question, getting reconstruction is just a part of the process. Every person has to do what is best for them, no one else. There's no place for judgment when talking about body image, especially in the context of cancer treatment.

Along with being thorough and risk averse, I also value practicality and efficiency. I don't think it's about looking for the "easy" path, but the path of least inconveniences (which, generally speaking, I think actually tends to require more advanced planning).

Getting reconstruction typically means having a longer recovery period after surgery, and usually involves multiple surgeries over a long period of time. Over the years, complications are possible, and sometimes implants need to be replaced. This whole experience has been so disruptive and unpleasant that I just want it to be done. I don't want to have to think about multiple surgeries moving forward, or increasing the likelihood of complications of any kind.

Since it's still possible for breast cancer to recur even after a double mastectomy, my NP says I will have regular clinical exams to feel for palpable lumps under the skin. The same method is used even with reconstruction, and I just feel better knowing there is nothing obstructing the detection of new lumps. Some women who get reconstruction might still be recommended for routine breast imaging, depending on their risk factors. To me, that just translates as an added on-going inconvenience.

Beyond wanting to minimize procedures and complications, and wanting clear access to detect possible recurrence, of course there's the self-image factor. When I think about it, I don't feel like my breasts are a significant part of my self-identity. Of course, I won't know how I really feel until after the surgery...

I am apprehensive mostly about two things. First, that I might end up with "dog ears", little flaps of skin or fat that hang under your armpits and look like little dog ears. (Some women call them "side boobs"!) My breast surgeon assures me that if I do develop them, he or a plastic surgeon could do revision surgery to remove them. It would be unfortunate to have to have another procedure, but at least I'm prepared for the possibility.

Second, without breasts "rounding out" my body shape, my belly fat will be more noticeable. (Some women refer to having a "Buddha belly"!) I've mostly not been self-conscious about my weight gain over the years, I think because it's not super noticeable with my body type. But it will definitely be more noticeable without breasts. I am thinking I will want to make more of an effort to eat well and exercise to hopefully reduce that belly fat a bit. And as much as I am not a fan of shopping, I will need to find new clothes that fit and are flattering.

There is the option of wearing prosthetics, and I haven't ruled it out. I'm honestly not thinking about it too much just yet, as I want to see how I feel just being flat. Apparently there are all kinds of prosthetics available, so it will require more research if I go in that direction.

Finally, one related thought that has occurred to me is that I actually feel more uneasy about the possibility of needing chemotherapy than the idea of losing my breasts, because I don't want to lose my hair. Unlike my breasts, my hair feels very much tied to my sense of self. I love my hair. I would hate to lose it, and I know a wig would not feel the same.

Why I'm Getting a Double Mastectomy

Since I've starting sharing my news, and this blog, with friends and family, I've had a couple people ask me why I'm opting for the double mastectomy, when only a single mastectomy of my right breast is medically necessary.

First, I think it's important to note that such a decision is obviously very personal, and every patient needs to make their own decision based on their diagnosis and medical history, in conversation with their medical professionals, and taking into consideration their own priorities and feelings about self-image. Each person's thought process will be unique to them, and what feels right to one person might not work for someone else. This post is just a record of my personal decision.

If you ask me to describe myself, I would say I am nothing if not thorough! (As evidenced by this blog...) But in choosing words to describe me, a close second might be "risk averse". I will always wear my seat belt, I will always bring along an umbrella, or a light jacket, just in case.

This whole process - from finding the lumps to making appointments and having mammograms and ultrasounds and then an MRI and biopsy and waiting for phone calls with news - has been super stressful. I NEVER want to go through it again.

At this point, my doctors and nurses have told me that my MRI shows "something" in my left breast. That means it's possible I already have cancer in my left breast. Also, the "variants of unknown significance" in my genetic testing say I "may" have a hereditary risk; it hasn't been ruled out. Combined with the fact that I do have a family history of breast cancer (two paternal aunts had it), all of it together means there's a real possibility of having to go through this whole process again in the future for my left breast. Just, no.

I might have worried about being overly aggressive by opting for the double mastectomy, except my breast surgeon characterized the decision as a "shared decision" established by us both together. It definitely offers the most peace of mind, which is important to me as someone who is prone to anxiety.

My top two priorities right now are:

1. Get rid of the cancer that's in me now.
2. Reduce the risk of cancer coming back.

Even with a double mastectomy, my NP says there's still a 1-3% chance of recurrence. It's not 0%, but if that's the lowest possible risk, I'll take it.

Secondary to reducing my risk of recurrence and increasing my peace of mind was considering my self-image. It's hard to know how you would feel in a situation until you are actually in it, but the idea of being "lopsided" actually makes me feel more uneasy than the idea of just being symmetrically flat. I'm not worried about questioning looks or judgmental comments, I'm sure to get those either way.

With a single mastectomy, I could still opt for reconstruction or wear a prosthetic, but from what I gather, they don't always look symmetric anyway. It would just be one more thing to worry about before leaving the house, like, "Do my boobs look even?" And for someone who already doesn't prioritize fashion or style or appearances in general, it just seems like something I'd rather not worry about.

One thought that did occur to me was, if I were younger, and still planned on having children, I would absolutely want to keep my left breast in the hopes of breastfeeding any future babies. But I don't plan on having any more kids. I appreciate that I was able to breastfeed both my kids, and I feel like my breasts have served me well. It's okay if they have to be removed. Like one of my aunts pointed out, a breast is not a vital organ.

So, interestingly, I find myself having kind of a Marie Kondo type attitude. Haha. Due to the cancer, my breasts no longer spark joy for me. Before getting rid of them, I am thanking them for having served their purpose.

9/5/19 Update: After my surgery, the surgical pathology found cancer in my left breast, validating my decision to have a double mastectomy!

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!

6/20/19: 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.

6/19/19: My NP Called Me

My NP called this morning, as promised.

Every time someone from the Breast Center calls, it's a different number. But now I know to pick up just in case.

I had prepared a list of questions in advance. The NP had me ask my questions first, but in this post, I think it makes more sense to describe important information first.

I have my appointment with the breast surgeon next Friday. I'll have my husband go with me to that appointment.

The NP said the surgeon would likely recommend a mastectomy.

She said she spoke with the surgeon about my case. The cancer being in 2 locations, in 2 quadrants of the breast, is complicating. Usually, when the cancer is in one location, they surgically remove the tumor, then treat the location with radiation to reduce the chances of recurrence. I guess the radiation is targeted to the specific location of the cancer, and it's not an option if there are 2 locations. I wasn't clear on why not, but I found this site that lists radiation as an option if the cancer is "located in one site."

Additionally, the second lump being so close to the nipple is also complicating. She said because of this location, breast-conserving surgery doesn't provide a good option cosmetically. 

She said she would also make an appointment for me with a plastic surgeon to discuss breast reconstruction surgery. We will have to drive to the main hospital in the city for that appointment. At this point, I'm not sure how I feel about breast reconstruction surgery, but I figure it makes sense to meet with the plastic surgeon to learn about the process and what my options are.

Other things we talked about during the phone call:

I asked for clarification regarding the first lump. She said the lump itself is a sebaceous cyst, and the cancer is behind it. The cancer showed up as a "shadow" on the ultrasound, so it looked like maybe the cyst had ruptured, but it turned out to be "not related." I'm still not fully clear on it, but it seems like it's just a coincidence that the cyst happened to appear in front of the cancer.

And the second lump? It's a cancerous tumor. She called my case "multifocal" because there is more than one lump, but when I Googled it, I think maybe she meant "multicentric" because she was clear that my 2 lumps are in different quadrants. I'm not sure if having multicentric cancer is automatically worse than having unifocal cancer, but it can't be better. (In Googling "multicentric breast cancer", it does appear that a mastectomy is the typical course of action.)

The NP said that when there are multiple tumors, they evaluate the cancer based on individual tumor size; they don't add up all the tumors for a total size. She referred to my tumors as "small," and she said having the 2 locations doesn't necessarily mean the cancer is more advanced. I guess that's reassuring. 

I asked if they could tell what type of cancer it is, and what stage? She said they are still waiting on the receptor testing. And they will have a much clearer picture after surgery. During surgery they will look at the lymph nodes (something about a dye, and a biopsy) because apparently if breast cancer spreads, it will spread to the lymph nodes first. She did say that my lymph nodes "looked okay" on the MRI, so that's a "good sign."

Finally, I told my NP that I had read online that it takes about 2-5 years for breast cancer to grow big enough to be palpable. So understanding that my body has already hosted this cancer for a while, is there anything I can or should be doing now that I've been diagnosed? She said the only lifestyle recommendations are regular exercise and a healthy diet.

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.)

6/6/19: My NP Called Me with MRI Results - Images are "Suspicious"

I need to start answering unknown callers on my cell phone, at least while there's a possibility of receiving a call from a medical professional.

I missed the NP's phone call. She left a message about discussing my MRI results. I returned the call immediately, but she was already no longer available. I waited 3 anxious hours for her to call me back.

She said the MRI images showed "suspicious enhancements" in both areas.

Regarding the first lump: My understanding is that the MRI confirmed a cyst within the skin. However, the area underneath the cyst was "suspicious."

Regarding the second lump: This area was "enhancing on the MRI with a similar pattern" as the other area. Given the MRI results, this area should have been detectable on the ultrasound; it's surprising it wasn't.

The next step would be a repeat ultrasound with biopsy for both areas.

Up until now, I had gone to a separate Breast Imaging location for my tests, mostly because it was where I had been getting my annual screening mammograms, and because it was slightly easier to drive to than the Breast Center. At this point, though, it seemed wise to consolidate all my appointments at the Breast Center.

The biopsy results would be available about 5 days afterwards.

I don't know what all goes on behind the scenes, but the NP said someone would call me to schedule the ultrasound and biopsy appointment. Maybe it's just not the NP's job to schedule appointments.

Again, I waited for a call.

6/4/19: NP Appointment

After the MRI, I headed over to the Breast Center.

Since "my" NP (the one who saw me initially) was not in the office that day, I was seen by a different NP. She gave me a lot of good information, so I'm glad I had this appointment after all.

Mostly, the NP reassured me that bruises and sebaceous cysts can appear anywhere on the body, and I just happened to get them on my breast. The bruise itself looked like a regular bruise. Why did it appear? Who knows. Maybe I put weight on it in just a certain position while sleeping. The bruise would just have to run its course, which means it might get worse and change lots of colors before getting better. 

She assured me that the area was not infected. Symptoms of an infection would include redness, pain, and a fever. 

She also explained that using a warm compress mostly helps to encourage the cyst to drain, but since neither of my lumps had any kind of opening in the skin from which to drain, there was probably no reason to do it, unless I felt it relieved some discomfort. 

She said if the cyst drained, that would be a good thing. Surgical removal was an option, but the entire "sac" would have to be removed, or else it would likely just return again. If the cyst isn't actually causing any problems, it's usually best to just leave it alone.

I mentioned that the bruise was becoming more painful as the day went on. The NP suggested I wear a supportive bra. (Back at home, I pulled out my most supportive bra and wore it for the next several days, even while sleeping. It really did help relieve the pain quite a bit.)

Finally, the NP took a photo of my bruised lump to show my regular NP. I wish I had thought to take a photo, too, for my own records. But I didn't.