12/17/23: Cost Update

Our insurance coverage year starts on July 1, re-setting our deductible, which is why we had to pay so much for the August appointments.

As usual, I'm listing here the amount billed, which gets added into the total cost, and the amount we paid, with insurance. 

1/13/23: GYN Appointment: $315.00 (Covered by insurance) 
1/30/23: Anastrozole (generic): $545.99 (Covered by insurance)
3/28/23: Blood Work for Hepatology Appointment: $227.63 (I paid $44.68)
4/4/23: Hepatologist Appointment: $326.00 (I paid $326.00)   
4/4/23: Hepatologist Hospital: $109.00 (I paid $109.00)   
4/29/23: Anastrozole (generic): $545.99 (Covered by insurance)
6/1/23: Medical Oncology NP Appointment: $326.00 (I paid $278.70)   
6/1/23:  Medical Oncology NP Hospital + EKG: $235.00 (I paid $147.02)   
6/26/23: Cardiologist Appointment: $508.00 (I paid $86.04)   
6/26/23: Cardiologist Hospital + EKG: $283.25 (Covered by insurance)
7/27/23: Anastrozole (generic): $545.99 (Covered by insurance)
8/8/23: Stress Test Cardiologist: $347.00 (I paid $262.14)   
8/8/23: Stress Test Hospital: $3,147.00 (I paid $1,956.98)

Total cost to date: $471,487.06
With insurance, cost to me: $14,860.55

1/13/23: OB/GYN Appointment

Today's appointment was an annual check-up, but I figured I'd include it in this blog because it's my first time seeing my regular OB/GYN after getting my ovaries out.

First, she reviewed my medical history since the last appointment. She saw the oophorectomy surgery in my medical records, but had not seen the Tamoxifen and hepatology-related stuff, so I caught her up and explained how that led to removing my ovaries. Without knowing that background, I think she at first assumed that my oophorectomy was elective, since we had previously discussed that option.

(It's interesting to me how my different medical providers all seem to gather different information from my records, even though they're all in the same hospital network.) 

After going over everything from last year, she asked if I had any questions. I asked her if she thought the neuropathy in the last 2 toes on my right foot could be a symptom of menopause? At this point, I would describe the sensation most like this: it feels like my sock got wet around those toes, but when I check my sock, it's dry. But it also still feels like the sense of touch is subdued in those toes, similar to how my chemo-induced neuropathy feels in my fingers, as I described to my medical oncologist recently. Anyway, my OB/GYN didn't think it sounded like menopause. She said it's possible it could have resulted from how my body was positioned during recovery from surgery (similar to what my GYN surgeon said), in which case, she said it could still improve, though she did not elaborate on how or why.

(Meanwhile, I Googled the "wet sock" feeling, and was surprised - and somewhat relieved - to find some references. If my toes still feel weird by the time my next PCP appointment rolls around, I might ask about whether or not I should see a neurologist, or maybe even a podiatrist, since the links I found were posted by foot specialists.)  

Anyway, the doctor did a brief breast exam and also looked at my oophorectomy scars, then did the internal exam. She said everything looks fine, I don't need any other follow-up besides my annual check-up. Yay! At this point, she asked me again if I have any more questions; notably, she didn't make any signs of leaving until after I said no. 

I think that's actually what I appreciated most about this appointment, how the doctor asked me multiple times if I had any questions, and how she didn't appear rushed when asking. It really made me feel like she wanted to help me if she could, rather than me feeling like I am monopolizing the doctor's time or being a "difficult" patient by asking questions.

6/2/22: I Checked My Insurance Claims Online

This update has more line items than usual because I kept forgetting to make this post earlier. I'm particularly peeved that there is a "Hospital" charge for my 4/26/22 Medical Oncology NP Phone Appointment, for which I did not even step foot into the hospital.

As usual, these costs are added into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year.

1/6/22: BreastCare NP Appointment: $221.00
1/12/22: OB/GYN Appointment: $315.00
1/12/22: OB/GYN Hospital: $392.00
1/21/22: Lupron (Including Blood Work): $1,858.16
2/2/22: Liver Ultrasound Radiologist: $129.00
2/2/22: Liver Ultrasound Hospital: $557.00
2/8/22: Hepatologist Appointment: $481.00
2/8/22: Hepatologist Hospital (Including Blood Work): $1,131.00
2/18/22: Lupron (Including Blood Work): $930.16
2/18/22: Anastrozole (generic): $545.99
3/10/22: Bone Density Radiologist: $44.00
3/10/22: Bone Density Hospital: $674.00
3/17/22: FibroScan Radiologist: $37.00
3/17/22: FibroScan Hospital: $509.00
3/18/22: Lupron (Including Blood Work): $930.16
4/15/22: Lupron (Including Blood Work): $930.16
4/26/22: Medical Oncology NP Phone Appointment: $260.00
4/26/22: Medical Oncology NP Hospital: $105.00

Total cost to date: $443,019.94
With insurance, cost to me: $10,197.07

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. 

1/12/22: OB/GYN Appointment

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

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

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

As usual, I'm adding these costs into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

12/28/20: OB/GYN Appointment

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

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

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

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

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

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

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

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

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

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

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

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

12/23/20: Lupron + Medical Oncology NP Appointment

This was my first medical oncology appointment since finishing Herceptin and getting my port out. It actually felt a little weird! I had to get blood work done, and instead of going in to see the port nurse, I saw the phlebotomist for a regular blood draw. She commented positively that all patients eventually "graduate" to her, but it's funny, it felt more like coming around full circle, since I started with her before I even got my port.

The Cancer Center felt like a well-oiled machine today, maybe because there are fewer appointments this close to Christmas. I went straight from the reception desk to my blood draw, from there to getting my vitals taken, and then I was brought directly to the exam room. I don't think I had to wait even 5 minutes for my NP to come in. 

Today was the first time I felt really comfortable with my NP. We started with general topics, like how my family and I are doing in this pandemic, what we're doing for New Year's, and then she had a list of items to ask me about - basically she asked for a update on each of my major side effects - and I was pleased that her list was a spot on match for things I wanted to talk about anyway. 

Most of my lingering side effects (very mild neuropathy in my fingers, mild fluid retention, joint stiffness) aren't disruptive to my daily living, they're just annoying. The only new thing I had to report was some unexpected spotting last month, which was concerning because the Lupron is supposed to put me in chemically-induced menopause. She said it's unusual, but not unheard of, and she referred me to a gynecologist. As it turns out, I actually already have an OB/GYN appointment scheduled on Monday, so we'll just see how that goes. 

She also pulled up my blood work and added a request to test for hormones. Apparently, estradiol is an estrogen hormone, and by measuring it, you can see whether or not the Lupron is working, i.e., whether or not it's sufficiently suppressing the ovaries to not produce estrogen. 

Some good news is that all the routine blood work came back normal.

I also asked about the COVID-19 vaccine. I haven't heard much in terms of whether or not it's been tested in cancer patients, or whether or not a history of cancer counts as a comorbidity for vaccine priority. She said having a history of cancer is definitely a risk factor, and she and her colleagues are advocating for patients with a history of cancer to be included in the "individuals with one comorbidity" group. But the logistics of getting just the first round of vaccines out to health care workers is still being ironed out, and there's no way to say how things will go later. I'm not really worried; I figure I'll just do whatever is recommended, whenever it's recommended.

Anyway, after that appointment, I went directly to the infusion room to get my Lupron shot. The nurse was someone I think I had never even met before, so we didn't chit chat much, she just gave me the shot, and I was done within minutes. Today's whole visit was less than an hour. 

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.

4/1/20: Phone Calls

The OB/GYN office called me to re-schedule next week's appointment. Because of the coronavirus, they asked me to schedule 2-3 months out, so the new appointment is in July.

I also called the hospital to see about my echocardiogram appointment next week. They said as of now the appointment is on, but they will call me if something changes.

My state's stay-at-home advisory was extended to May, so I expect all my appointments through the end of April (including the ones that were re-scheduled from March) will be re-scheduled again.

11/9/19: I Picked Up a Prescription + I Checked My Insurance Claims Online

Since we've already met our deductible, the "You Pay" amounts for these claims were all $0. The numbers listed below are the "Claim Total" amounts.

10/8/19: OB/GYN Appointment: $364.00

10/18/19: Chemotherapy Cycle #3 (Including Blood Work, Medical Oncologist Appointment, Flu Shot, Physical Therapy Appointment #4): $9,405.31

10/25/19: Chemotherapy Cycle #4 (Including Blood Work, Physical Therapy Appointment #5): $7,034.71

11/1/19: Chemotherapy Cycle #5 (Including Blood Work, Lupron, Physical Therapy Appointment #6): $7,648.48

I got a refill for 3 months of loratadine, which was not covered by insurance, so that was an out-of-pocket expense.

11/8/19: Loratadine Prescription (3-Month Supply): $27.20

Total cost to date: $115,223.14

With insurance, cost to me: $4,229.43

10/8/19: OB/GYN Appointment

I made this appointment even before I was diagnosed because my PCP thought all my breast-related appointments were an indication of having an increased risk for breast cancer, and she recommended I talk to an OB/GYN about non-hormonal birth control methods. There is some evidence that using hormone-based birth control may be related to a slightly higher risk for breast cancer. Anyway, once I was diagnosed, my NP said I definitely shouldn't be taking hormonal birth control.

This is probably another TMI post, but there's a lot of important information I want to record.

Most interestingly, the OB/GYN did not feel that an oophorectomy (removal of ovaries) has any serious long-term side effects that I should worry about. I asked her about possible long-term risks, and she said the information I had all seemed tied to one study that is over 10 years old, so she didn't give it much merit.

She was so unconcerned about the risks of ovary removal that she said I could consider an oophorectomy as a means for birth control. The Lupron is supposed to put me into a chemically-induced menopause, so I asked if birth control is still necessary? She said it is, because the purpose of the Lupron itself is not birth control. Another option is a non-hormonal IUD, but she warned that having one might mask other bleeding symptoms that might result from the Tamoxifen; Tamoxifen can increase the risk for uterine cancer, and one of the earliest symptoms can be abnormal bleeding. Barrier methods (which is recommended during chemo) actually seem the least problematic.

She also said I might want to consider an oophorectomy to avoid the monthly Lupron injections. I had already seen in the Facebook support groups that women with strong ER-positive breast cancer do sometimes choose surgical menopause over chemically-induced menopause. I'm not sure if there's a benefit other than avoiding the inconvenience of monthly appointments. My medical oncologist didn't mention it, but I suspect that's because it's in the OB/GYN domain. I'm still concerned about long-term risks, but it's not something that needs to be decided any time soon. I can see how the Lupron goes, and can always elect for an oophorectomy later.

The OB/GYN further discussed ovary removal in the context of my genetic testing. Even though the VUS in my BRCA2 gene wasn't enough to justify ovary removal in the opinion of the genetics specialist, my OB/GYN seemed to lean towards being cautious, similar to my breast surgeon. She confirmed that ovarian cancer is hard to detect, having only non-specific symptoms, so removing the ovaries would make that one less thing to worry about. It seems kind of drastic to me, since I don't even know that I do have an increased risk for ovarian cancer, but I guess I "may".

Overall, she gave me the impression that removing my ovaries could have a number of benefits, and she didn't seem too concerned about any risks. She didn't go so far as to "suggest" it, but she gave me a lot to think about.

We also spent some time talking about symptoms of menopause, so I'll know what to expect. (I still can't believe I have to worry about menopause at age 43.) She said the average age when natural menopause starts is 51, and it's technically when periods have stopped for at least a year. Since the Lupron is a pre-menopausal treatment, I asked how will I know when I'm in natural menopause. The oncology nurse had said that a blood test could measure hormone levels, but the OB/GYN said it's hard to tell unless I stop taking Lupron for a period of time before getting tested.

9/19/19: (~1 Month Post-DMX) Medical Oncologist Appointment - I Need Chemotherapy

I really like my medical oncologist. She was just the right balance of knowledge and caring. A nurse sat in on the entire meeting, and she will be the person helping me navigate upcoming appointments and procedures.

So much information to process.

I will be getting chemotherapy.

I cried a bit at this news, but actually I am on board with the recommendation; I feel my oncologist really gave my case a lot of thought, and is giving me the best treatment for my unique situation. Going into this appointment, because I was in a grey area, I was most worried that the doctor would not be able to confidently recommend a clear course of treatment. She said my case is indeed unique. Two tumors in my right breast, one tiny tumor in my left, two different types of cancer.

The two tumors on the right were ER-positive, PR-positive, and HER2-negative. The larger of these two was sent for Oncotype DX testing, which predicts the likelihood of recurrence and whether or not the patient would benefit from chemotherapy. The result came back "intermediate to low risk", which is basically another grey area with no clear recommendation in terms of chemotherapy. The actual number was 18. The above link gives this not super helpful explanation of results: "If you have a score of 16 or above and are aged 50 or under, your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy."

The tumor on the left was ER-positive, PR-positive, and HER2-positive. Usually, a HER2-positive cancer is treated with Herceptin in conjunction with chemotherapy. But since this tumor was so small (4 mm), it wasn't clear if Herceptin and chemo are still necessary.

My oncologist brought my case to 3 additional oncologists at the main hospital in the city. All 3 oncologists said that yes, I should be treated with Herceptin. Moreover, they all agreed on administering it via chemotherapy with Taxol, which interferes with the growth of cancer cells. My oncologist said their agreement is noteworthy; in a non-straightforward case like mine, it's more common to get differing opinions. I do find it very reassuring to know that even though I started in a "grey area", my course of treatment was actually recommended by 4 oncologists, including my own.

Ultimately, my age played a large factor in the decision. Because I am considered young, the likelihood of recurrence is high. Since I am healthy and have no other health issues, I should be able to handle the chemotherapy.

My medical oncologist said my regimen will be like "chemo lite". My treatment will last a year total. For 12 weeks, I will get Taxol and Herceptin once a week. Then I'll get a maintenance dose of Herceptin every 3 weeks for the rest of the year.

Before starting chemo, I need to get a baseline echocardiogram. I also need to get a port placed in my upper chest, which is how the chemo will be administered. Both these appointments will happen next week.

I will also be getting hormone therapy.

All 3 tumors were ER-positive and PR-positive, which means the cancer's growth is fueled by estrogen and progesterone. I'll be getting both Tamoxifen and Lupron. Tamoxifen is a pill that blocks the estrogen receptors in the cancer cells. Lupron is a type of ovarian suppression. It's an injection that stops estrogen production in the ovaries. I'm not entirely clear on this, but it sounds like I may need to take Tamoxifen and Lupron until menopause.

I do not need radiation.

Mainly, I think, because I had clear surgical margins and my lymph nodes were clear.

All my treatment moving forward is to prevent recurrence. Chemotherapy and hormone therapy are both systemic treatments, and as this video explains, they are needed to address any cancer cells that already escaped from the breast and may grow into cancer later.

Finally, we discussed my variants of unknown significance in my BRCA2 and PALB2 genes. BRCA2 is also linked to ovarian cancer, and PALB2 may be linked. Ovarian cancer is very difficult to detect, and tends to already be late-stage when it's found. If I had known mutations in BRCA2, an oophorectomy (removal of ovaries) would be recommended. Since my mutations aren't known to be problematic, they're not sure if there is enough reason to worry about ovarian cancer. My medical oncologist said she would confer with the genetics specialist, and I should also discuss this question with my OB/GYN. (I have an appointment in October.) There seems to be a lot of negative side effects when getting ovaries removed pre-menopause, so I hope I can avoid it.

On Monday morning Ken and I will meet with the oncology nurse to review my entire treatment plan. It'll also be a chance for us to ask questions.

Incidentally, at the start of this appointment, I had a blood draw. In retrospect, I'm sure it was to get a baseline before I start treatment.

It's all very overwhelming. I really feel like I'm just being carried along on this river. I don't know where it's going. Whatever comes up, it is what it is. I just have to do whatever I have to do.

7/1/19: Breast Surgeon Appointment

I feel a lot better now that we've met with the breast surgeon! My husband went with me to this appointment, and it feels good to have a plan.

We covered so much information in this appointment. Here goes.

I will be getting a double mastectomy with no reconstruction. He will also remove 2-3 sentinel lymph nodes on each side for testing. (More details on that below.) The earliest available surgery date is likely to be in mid-August, but they will put me on a wait list for an earlier date. They will call me probably next week with the surgery date.

It sounded like the surgeon got involved starting with my MRI report. He asked me to fill him in on everything up until the MRI. I dare say he expressed a bit of surprise when he learned that two mammograms and two ultrasounds did not detect either of my cancerous tumors. He said maybe the sebaceous cyst was like my guardian angel, causing me to pay more attention to my breast and leading me to an earlier diagnosis. (Incidentally, at this point, the sebaceous cyst is no longer visible, and the palpable lump is much, much smaller. I'm not even sure if what I'm feeling is the cyst, or the cancer...)

He said the biopsy of my 1st lump showed both cancer and necrotic tissue. This is the only part of the appointment I didn't quite understand. What is the significance of the necrotic tissue? He didn't seem too worried about it, and what he did say was pretty much in line with this.

He called my cancer "invasive carcinoma with ductal and lobular features." I think the 1st area (the cancer behind the sebaceous cyst) is in the lobules (milk-producing glands), and the 2nd area (the cancer near my nipple) is in the milk ducts.

He said I am HER2 negative, which is a good thing. He said HER2 is a growth factor, and the fact that I am negative means maybe I will not need chemotherapy.

I am also 90% ER+ (estrogen receptor positive), which means I should respond well to hormone therapy.

Putting it all together, he said I am stage 1. But he emphasized that much more will be known after the surgery.

The surgeon confirmed that because the cancer is multicentric, a full mastectomy of my right breast is recommended. He said at this point, the two lumps look like 2 separate tumors, but during the surgery they may be able to see if the two are actually connected (which means there was 1 tumor that spread).

Contrary to what the genetic counselor had said, he thought the "variants of unknown significance" were very important. The fact that they are "unknown" means they could, possibly, be 100% linked to breast cancer, but we just don't know that yet. Those variants, combined with the history of cancer in my family (2 paternal aunts with breast cancer), and also considering the unknown abnormality seen in the MRI of my left breast, means a double mastectomy would be a reasonable course of action. I agreed. After surgery, both breasts will be sent to the lab for testing, so ultimately we will know if there really was cancer in the left breast already.

During the surgery, it is customary to look at the lymph nodes to see if the cancer has spread. Apparently, if breast cancer spreads outside of the breasts, the only path is through the lymph nodes. The surgeon will eject a dye into each breast. The dye will travel the same path the cancer would be likely to take. The first lymph nodes to be reached by the dye are called the "sentinel" lymph nodes. (Like they are keeping guard for the rest of the body!) The surgeon will remove 2 or 3 of these sentinel lymph nodes on each side for biopsy. Even though there is no confirmation of cancer in the left breast at this point, he will remove the left sentinel lymph nodes just in case, because once the breast is removed, there will be no way to identify the sentinel lymph nodes for future biopsy (no breast tissue in which to inject the dye).

Whether or not the sentinel lymph node biopsy shows cancer may change the staging of the cancer and will determine my course of treatment, including whether or not I need chemotherapy.

After surgery, when all the lab results are in, I will meet with a medical oncologist about chemotherapy and medication, which are considered systemic treatments for cancer. (They treat the whole body, not just the location of the cancer.)

Because my cancer is ER+, the medical oncologist may prescribe an anti-estrogen pill like Tamoxifen, which is appropriate for pre-menopausal women. Ovarian suppression pills could also be used to prevent the ovaries from producing estrogen. Being 90% sensitive to estrogen, I asked if I should consider getting my ovaries removed? He said that's definitely something I should discuss with the medical oncologist and my OB/GYN. (Ovary removal surgery would be done by the OB/GYN.)

If necessary, I will be referred to a radiation oncologist. Radiation (like surgery) is considered local treatment for cancer tumors. A mastectomy removes the entire area of the tumor, which makes radiation less likely.

The breast surgeon said radiation is rare for a stage 1 cancer with double mastectomy. But radiation could be recommended if the tumor is greater than 5 cm, if the cancer has already spread to the lymph nodes, or if there are "positive margins". "Surgical margins" refers to the normal breast tissue that is removed along with the cancer. "Clear" or "negative" margins means normal tissue surrounds the removed cancer. "Positive" margins means cancer cells go right up to the end of the removed tissue (which means maybe not all the cancer was removed).

Because I am not getting reconstruction, I also spoke with the breast surgeon about wanting completely flat results, i.e., no excess skin or "dog ears". (If breast reconstruction is still a possibility, surgeons may purposely spare excess skin.) He said he understood my concern, and if there are "poor cosmetic results" after recovery, either he or a plastic surgeon could do revision surgery (a "quick nip-tuck" outpatient procedure) to fix it.

The breast surgeon offered to refer me to a plastic surgeon if I changed my mind about reconstruction. I appreciated that he was making sure I understood all my options while still respecting my decision and not pushing me in one direction or the other.

He also let me know about contoured prosthetics that are custom-made to fit an individual's chest, so they fit and look better than other prosthetics. I haven't given much thought to prosthetics yet, but that does sound appealing. He said he'd get me the information for them (maybe a prescription?) after the surgery.

Regarding the post-surgery recovery, he said I could expect 1 night in the hospital, and then I should be functional by the time I get home. I shouldn't do any cooking or cleaning or anything like that for about a week. He estimated recovery to be 3 weeks, but no heavy lifting for up to 6 weeks. He told me about "drains" that will collect fluid in the days following surgery. (They will be removed after 5-7 days.) I think I would have been more taken aback or confused by this revelation if I hadn't already learned about drains on the Facebook group for women who have had double mastectomies.

Finally, we met briefly with my biopsy nurse, who I learned is my "navigator," which means she is the person coordinating my care. She will take care of cancelling the MRI with biopsy appointment, and she'll be the one who sets up my medical oncologist appointment. I mentioned to her my uneasiness over the fact that I had taken birth control pills for so many years. She reassured me that no studies definitively link birth control pills to breast cancer; birth control pills may slightly increase the risk for breast cancer for some women, but there are many factors that may influence the results.

Now, all I can do is wait for a scheduler to call with my surgery date.

5/23/19: Phone Calls

Taking my PCP's advice, I called the Breast Center to inquire about my MRI appointment.

After choosing the automated menu selection for scheduling, the person who answered the phone said my timing was perfect; my insurance company had just approved the pre-authorization.

My NP had told me that the MRI should be done at a particular time during my menstrual cycle, so my MRI had to be scheduled during a specific window of dates. I made my appointment, which would be in 1 1/2 weeks.

I also took my PCP's advice and decided to schedule an OB/GYN appointment to discuss birth control options.

I loved my OB/GYN who saw me through the births of both my children. I also regularly saw an NP in the same office, and I loved her, too. A few years after having my second child, I figured my PCP could take care of my Pap tests and the prescription for my birth control pills, so I stopped going to my OB/GYN. That was about 8 years ago.

I started by looking up my old providers. Unfortunately, neither were still practicing in my area. Now that I had to find a new OB/GYN, I decided to look within the same hospital network as my PCP and the Breast Center.

I went online to cross-reference doctors in the hospital network at locations near me with the list of in-network providers listed by my insurance company.

I called up the local OB/GYN practice affiliated with the hospital. As a new patient, they randomly assigned me to a doctor, and luckily it was the one I preferred based on the online profiles. I made an appointment for the earliest available date, which was 5 months from now, in October.

Just for good measure, I also called my insurance company. I confirmed that I do not need a referral for an OB/GYN appointment. I also learned that I had met my personal deductible, so the cost of the MRI should be fully covered; I would only need to pay a co-pay of $100.

5/22/19: PCP Appointment (Annual Physical)

Amidst all this, I just happened to have my annual check-up with my PCP.

She had received all the reports from my various tests and appointments. I told her I hadn't received a call yet about scheduling my MRI. She advised me to call them, and said that scheduling can sometimes fall through the cracks, so I shouldn't be afraid to be pushy.

We also discussed the fact that I currently take a birth control pill. In some cases, birth control pills may increase a woman's risk of breast cancer. All my current breast-related appointments basically mean I now have a higher risk of having breast cancer, and my PCP recommended I speak with my OB/GYN about switching to a different type of birth control.