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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

7/19/21: I Emailed My Genetic Counselor

Today I checked in with my hospital's Cancer Genetics department. I called the same number I used last year to speak with a genetic counselor, and a recorded greeting said the whole department is working remotely. I could leave a message, or else send an email to an address provided. Email sounded great!

In the email I mentioned the name of the genetic counselor I spoke with last year, and the same person emailed me back. It was only afterwards that I remembered that I had already exchanged a couple emails with her last summer, and could have emailed her directly. I'll try to remember that for next year.

Anyway, she said she looked up my VUS-es (one on the BRCA2 gene and another one on PALB2) in all the clinical databases, and they are both still categorized as variants of uncertain significance. So, no new information. It would be a relief if they turned out to be harmless variants, but I guess them being VUS-es is still better than them being cancer-linked mutations for sure.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

10/3/19: Medical Oncologist Appointment

My medical oncologist is so warm, she gave me two hugs! One at the start of the appointment, and one at the end.

Mostly we were touching base before I start chemo tomorrow. The biggest update she gave me was that she spoke with the genetics specialist about the VUS in my BRCA2 gene, and she does not recommend getting my ovaries removed to prevent ovarian cancer. There just isn't enough known about the VUS, and it's not enough to justify ovary removal. I was relieved because in the limited research I've done so far, it sounds like a pre-menopausal oophorectomy carries a lot of unknown long-term risks.

She confirmed I will start Lupron with chemotherapy tomorrow. It'll be a monthly injection in the butt. We talked about how Lupron will cause a chemically-induced menopause, so expected side effects are basically the typical symptoms of menopause. I asked if that includes osteoporosis. The short answer is yes; but given my current health, she said she wouldn't expect me to be at high risk for early onset osteoporosis. Chemotherapy itself can actually increase a patient's risk for osteoporosis, so she said she typically orders a bone density scan about 2 years after chemo. She also talked about ways to promote bone health, like doing weight-bearing exercises.

At last week's meeting with the oncology nurse, I got the impression that my risk for nausea was relatively low. But my medical oncologist seemed surprised that the nurse hadn't prescribed this other anti-nausea medication called ondansetron hydrochloride (name brand Zofran), so she gave me that prescription today. Googling it now, it sounds like a preventative medication that is usually taken in advance, but both the doctor and the oncology nurse who sat in on the appointment today (not the same nurse I met with before) said I could take it as needed.

I now have three anti-nausea prescriptions, so I asked how do I know which one to take when? The nurse said the Zofran should be my first option for severe nausea (even though it might cause constipation), and I could use the other one (prochlorperazine maleate) for mild nausea. They didn't mention when to choose the third one, which is primarily for sedation anyway. The nurse also said I could alternate them every 6-8 hours, and that the chemo nurse might give me a kind of calendar or schedule as a guide for when to take which medication.

She reiterated a desire for me to connect with the social worker. The oncology nurse said she'd see if the social worker can stop by during my infusion tomorrow.

7/30/19: Letter with Surgery Information + Medical Records + Support

After a completely stress-free vacation, returning home is actually kind of overwhelming. The "glad to be home and can't wait to sleep in my own bed" feeling is fantastic! But then there's laundry and grocery shopping and unpacking and piled-up mail and all the to-do items that have long been mentally shelved under "Things To Do After Vacation".

I was anxious to go through our accumulated mail to look for the letter with surgery details and any testing results that might have been mailed to me.

I did receive the letter with surgery information. It's amazing how having a paper in hand, with details laid out in print, can relieve my anxiety. 

I also received my genetic testing results in the mail. In addition to the 2 variants of unknown significance (VUS) that my genetic counselor already mentioned (in the BRCA2 and PALB2 genes), I have 2 additional VUS among the 83 cancer-related genes that were later tested. (The 2 new variants were found in the CDKN1C and MSH2 genes, each associated with less common syndromes.)

It now being over 2 weeks since I requested online access to my medical records, I gave the Breast Center a call to follow up. One brief phone call, and I got my patient portal login. Again, it's a wonder what resolving open issues does for my anxiety! Now to print out a whole bunch of appointment notes and test results to keep for my own records. (I have a binder.)

Among the many pieces of accumulated mail, there were 2 unexpected items. One was a card, the other was a package which turned out to be a water bottle with straws. Both were from the same person, my friend's friend who is giving me DMX advice and support. As relaxing and stress-free as my vacation was, it was not anxiety-free; my cancer diagnosis is always with me. Cancer-related thoughts and worries come and go every day. I can't express enough how incredibly uplifting it was to come home to two pieces of encouragement. I have heard it said that only people who have been through a certain experience know how best to support someone going through the same thing. The water bottle is for my post-surgery days, when drinking water is supposed to be critical to recovery, and with straws because even the smallest items may feel too heavy to lift at first. And the card is just what I needed to cheer me up during this pre-surgery waiting game.

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!

7/1/19: 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.

6/27/19: The Genetic Counselor Called Me with Testing Results

It's good news.

My testing for the 9 most common genes linked to a significant increase in risk for breast cancer showed no known mutations. This means I do not have a known inherited risk for breast cancer.

However, the testing did show that I have "variants of unknown significance" (VUS). The variants were found in my BRCA2 and PALB2 genes. The genetic counselor said they don't see these kinds of variants often enough in the lab to know if they are linked to cancer or not. They might just be benign mutations that occur in the general population.

Since not enough is known about these variants, they won't affect my surgery plans. That is, my genetic testing results do not provide additional justification for a double mastectomy.

Still... It struck me that the genetic counselor specifically used the word "known". I don't have any known mutations. But maybe my two variants are unknown mutations linked to breast cancer... After going through my family history with the genetic counselor, the prevalence of cancer on one side of my family seems concerning enough that it wouldn't be too hard to believe that there may be something genetic, even if it's not yet known...

Anyway, I did opt to do the further testing for the 83 genes associated with various hereditary cancers. The genetic counselor will call again with those results when they come in.