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.

7/29/19: Waiting

All this waiting is really hard.

I would have taken an earlier surgery date in a heartbeat, but since that's not actually an option, I just have to deal.

The silver lining of a late surgery date is that my family was able to keep all the summer plans we made before I even got diagnosed. It's nice that we can still have a normal summer. In June, we had a wonderful family trip to Niagara Falls. In July, we joined my in-laws for a very relaxing week-long beach vacation in North Carolina. On the drive there and back, we visited with family and good friends, old and new. And still to come we have a family reunion in Connecticut for my father's side of the family.

I read somewhere that a piece of advice patients are given is to take a trip to get away before starting treatment. Maybe it's a chance to celebrate your "old self" one last time before being forever altered. Or maybe it's a way to distract yourself from the anxiety of waiting. I think our trips have served both purposes, and I'm glad we took them. It's fortunate we already had them planned because I suspect I might not have taken the advice otherwise.

Another problem that comes with a late surgery date is a feeling of helplessness. There's nothing I can do to address the cancer now, I just have to sit around and wait?!?? Well, from the day I got diet and exercise advice from my friend who is a dietician, I have walked for at least 30 minutes almost every day. (I walk at least 5 days week, I am keeping track on my Fitbit!) I'm also trying to eat a more low-fat diet, though that effort has been much more of a challenge because I love food. Even though I haven't even gotten the original cancer out of me (and these recommendations were to help reduce recurrence rates), at least I feel like I'm doing something, rather than just simply waiting. I'll take any small feeling of empowerment anywhere I can get it.

I'm also planning ahead for my post-surgery recovery. I'm gathering items that I'm told will help make my recovery more comfortable, e.g., wedge pillows, cleansing wipes. I'll cook and freeze some meals like lasagna and wontons.

I still don't have access to the online patient portal, either, so I want to resolve that and get all my paperwork in order.

And on top of everything, there's the usual back-to-school business for the kids. I guess the timing is good after all so I can still tackle that to-do list. School supplies and new clothes and new shoes to shop for, not to mention the paperwork and phone calls and running around needed to authorize and acquire EpiPens / Auvi-Qs for both my kids for the upcoming school year.

So really, there's plenty to keep me busy while I wait...

7/22/19: The Breast Center Called Me with Surgical Details

I missed the phone call, but the person who called - the breast surgeon's administrative associate - left a very detailed message and said she would mail me a document with all the information laid out.

A week before surgery, I have a telephone appointment with a pre-operative nurse. She'll go over the surgery and answer any questions.

The day of surgery (August 23), I'll need to check in at 6:30 AM. I have an 8:00 AM nuclear medicine appointment.

I had no idea what nuclear medicine means, but a Google search told me:

"Nuclear medicine breast imaging involves injecting a radioactive tracer (dye) into the patient. Since the dye accumulates differently in cancerous and non-cancerous tissues, scintimammography can help physicians determine whether cancer is present." 

I'll still be sure to ask the pre-operative nurse about it on the phone.

The actual surgery is scheduled for 9:45 AM.

I also have a post-operative appointment already scheduled, but she didn't give me the date on the phone. She said it's listed on the document that I'll receive in the mail.

7/15/19: My Friends Offered to Connect Me with Women with Breast Cancer

I am so grateful for a couple of my friends who have offered to connect me with women they know who have had breast cancer.

I can't tell who reads my blog, or when, so I don't know if these offers were spontaneous or in response to yesterday's post, but it doesn't matter. I am thankful for every offer.

Again, it is simultaneously inspiring and depressing knowing there are so many women out there who have or have had breast cancer. The rate is 1 in 8 after all.

Right now, I am wholly focused on the surgery and recovery. That's the first step.

I don't even know what kind of treatment I'll need in terms of chemotherapy or radiation or medication. I'll find out when I meet with a medical oncologist after the surgery, after the pathology results are in. Maybe then I might want to connect with someone who has been through the same kind of treatment I'll be having, to get a better idea of what to expect.

For now, I feel good about having someone to give me advice through the DMX process.

Later on, when I know my course of treatment, if anyone knows someone who has gone through the same or a similar treatment, I may reach out and ask for an introduction.

7/14/19: I Got Advice from Women Who Had DMX

Online, a double mastectomy is frequently abbreviated as DMX or BMX (for bilateral mastectomy). PDMX or PBMX refers to a prophylactic double mastectomy, one that is performed as a preventative measure because the patient has a very high risk for breast cancer.

I personally do not know anyone who has had a DMX, but when I told a friend of mine about my DMX plans, she said she knew several! She offered to connect me with a good friend of hers who had the procedure done years ago. I am so grateful for my friend, and for the introduction she made.

Not only did my friend's friend have a PDMX, but her 2 sisters and a friend did as well, plus another friend had a DMX due to cancer. Wow. That's 5 women in her family/friend circle who have had the procedure. On the one hand, it's inspiring to know so many success stories. On the other hand, it's depressing that so many individual stories exist out there. 

I am beyond thankful for the incredible wealth of information that my friend's friend emailed me. She gave me her own tips, and then she also forwarded to me the advice that her sister gave her friend, and the advice that friend gave another friend! So that's 3 primary sources. 

My friend's friend compared all the advice to like getting advice when you have a baby for the first time. Everyone has their own opinion, based on their own experiences, and what works for one baby/family/mother might not work for another. But it's still good to gather all the different perspectives so you have an idea of the range of possibilities.

I appreciated that reminder because I did see variability in their advice. For example, one person said the hospital gave her "excellent" bras, the other said the hospital's bras were "awful". (They both had reconstruction.) Regarding drains, one person said they were "uncomfortable", another said she "didn't find them uncomfortable". I consider every piece of advice valuable because together they give me a better picture of what I might expect.

Interestingly, I noticed that all 3 women who gave advice had PDMX. I think this distinction is important. I think having a DMX in response to a cancer diagnosis adds a whole other layer to the experience... Getting lymph nodes removed adds another component to the physical recovery, post-surgery appointments additionally include medical and possibly radiation oncologists, and there's also the psychological factor of worrying about surgical margins and pathology results.

Speaking of psychological factors... I feel like women who opt to have PDMX are more likely to go into their surgeries feeling empowered. They must have been scared when they found out they have a high risk for breast cancer, but then they took their destiny into their own hands!

As a cancer patient, however, I feel more powerless than empowered. I guess the "double" part of my surgery is by choice, and I do feel good about that. But overall, I was blindsided by the whole diagnosis, and I feel like I'm being carried down the river of cancer treatment. I guess I can try to control the boat I'm in as much as possible - like it was my decision to have a DMX, and I can try to face this whole thing with positivity - but generally speaking, I just have to follow the current and see where this river leads. 

I also found it interesting that all 3 women said to stay away from online content, like other people's blogs and online forums, because they tend to be negative and lean towards experiences with complications. But I think that really must be an individual preference, because I do not at all regret joining the Facebook groups. I have found them to be so full of positivity and support! To me, they are spaces of inspiration and reassurance. I think they even help to lower my anxiety. Yes, there are women who post about all kinds of scary complications (and I can see how, for some people, it would be better not to go down those rabbit holes), but the responses always include calming advice and reassuring words. And there's definitely a fair share of women who post about totally smooth and complication-free surgeries and recoveries. I think I just appreciate knowing that I am not alone. Other women are going through similar, or even more harrowing, diagnoses, and they are coming through just fine. 

In addition to joining the Facebook groups, I also stumbled upon this blog, which I have found very helpful:

BC Becky: Never thought I'd want to be identified as a breast cancer survivor...

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!

7/12/19: Phone Calls + Medical Records + Diet and Exercise Recommendations

I called the Breast Imaging location to cancel my annual screening mammogram, which was on the calendar from being scheduled months ago, before all this happened. No breasts means no more mammograms for me!

I called my insurance company to ask if I needed to do anything for them in advance of my surgery. They confirmed that they have my breast surgeon referral on file, and it's the doctor who handles submissions for any authorizations that are needed.

At the suggestion of one of my cousins, I logged into my online patient portal intending to print out any official medical records related to my cancer. All the information I've gotten so far has been verbal, and it just seems like maybe it would be a good idea to have actual reports. But for some reason, the only records I could see online were ones related to my PCP.

I poked around on the internet and realized that even though my PCP's practice is a division of the parent hospital, there are actually two separate online patient portal systems, one for PCP practices, and one for the main hospital. I went through the steps to register for a main hospital account, which apparently takes 5-10 business days to be processed.

Meanwhile, in between figuring out the patient portal sites, I put a call in to my nurse navigator asking how I could get copies of my records. By the time she called me back, I had discovered the main hospital portal site. I said hopefully that account will give me the access I'm looking for. But since that might take up to 2 weeks, the nurse said she'd go ahead and mail me what's in my medical file already. She mentioned that she didn't see my genetic testing results in my file, so she'd follow up with the genetic counselor about that.

I also got a call today from a very dear friend who I've known for about 30 years. She's a dietitian, and has worked on clinical studies with breast cancer patients. She gave me some helpful advice on diet and exercise.

Regarding diet: Studies show that eating a low-fat diet can reduce recurrence rates, but it's not clear if that's due to eating more fruits and vegetables, or eating less junk food, or losing weight overall, or what. Without knowing exactly what has the most benefit, general recommendations include eating a more plant-based diet, minimizing consumption of red meat and processed foods, and eating whole grains. Okay, I can do that.

Regarding exercise: A recent study showed that 30 minutes of "moderate" walking per day can reduce breast cancer recurrence by 40%. (My friend said "moderate" is like walking at a pace where you can talk but can't sing.) I can do that, too!

7/11/19: The Breast Center Called Me with a Surgery Date

Finally!

My surgery will be Friday, August 23. That was the first available date.

I'm disappointed because I was very much hoping for a date in early August, so that my husband (a public school teacher) could be home for the duration of my recovery, and so I could be fully recovered before school starts. 

I consider this date "the worst of the best" options. My husband and the kids start school the week of August 26, so this date is the last possible date that falls during summer vacation. That's the good part; at least the surgery itself isn't during the school year. The unfortunate part is that our household is obviously much busier when school is in session, especially at the beginning when we're still getting into a routine, and I will be out of commission, including no driving, for at least a few weeks.

I also just really want this cancer out of me. I mean, coming to terms with a double mastectomy is difficult, to say the least. But at least one of my breasts is literally trying to kill me, so at this point, I really just want them gone. 

7/9/19: I Cancelled the MRI with Biopsy Appointment

Hm.

At the breast surgeon appointment, my nurse navigator said she would cancel my MRI with biopsy appointment for me. (Since we decided on a double mastectomy, and both breasts would be tested, a biopsy of the left breast before surgery is no longer needed.)

But yesterday, I received in the mail a letter confirming my MRI appointment, scheduled for tomorrow. Maybe the letter was prepared before my nurse had a chance to cancel the appointment?

I called the radiology department to confirm my appointment was cancelled. The scheduler said my appointment was still there! She asked if I wanted to cancel it, and I said yes.

For my own sanity, I confirmed with my husband that both the breast surgeon and the nurse said the appointment was no longer needed, and that the nurse said she would handle the cancellation. I guess I'm a little troubled that this fell through the cracks - what else might also fall through the cracks then? - but my husband said cancelling appointments is probably low on the nurse's priority list.

Meanwhile, I am still waiting for the phone call telling me when my surgery will be. We have lots of summer plans that have been thrown up in the air until we find out the surgery date. I feel super anxious, and just want to have a known schedule.

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!

7/2/19: I Got Billed for the MRI

Just as I was told on the phone, I was charged only $100 for the MRI.

6/4/19: MRI Hospital: $4,274.68
With insurance, I paid: $100

Total cost to date: $5,607.68
With insurance, cost to me: $420

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.