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

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

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

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

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

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

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

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

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

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

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

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

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

8/28/19: (5 Days Post-DMX) I Took a Shower

Warning: This post includes a photo of my surgical drains.

I am mostly up and about now, but I do get tired out. I'm able to spend more time sitting up in bed, and here's the set-up I came up with.

The husband pillow is placed on top of the wedge pillow to give it more height. I have two large, firm pillows behind the husband pillow to provide more stability to support my back. I'm still using the two underarm mastectomy pillows; my underarms and the areas just in front of them have been swollen and bruised, presumably from the sentinel lymph node biopsy. The stuffed animals are there to provide extra support for my arms so I can rest them comfortably, especially when holding a book. (Any small thing feels like a weight on my arms.)

My skin has been irritated where the drain tubes press against my skin. This is where most of the itchiness occurs. Last night I put some Neosporin on it. It includes an analgesic ingredient which helped a lot.

I also folded over the bottom of the compression band so that the drain tubes are now exposed and not pressed against my skin. This way I get relief from the irritation while still keeping my chest area compressed.

I'm tapering off my Tylenol so that I'm taking 500 mg every 8 hours instead of 1000 mg.

I was allowed to shower 2 days after surgery, but I didn't feel ready yet. Yesterday, I decided I would shower today, so I had time to mentally prepare.

I've seen photos of scars from a double mastectomy with no reconstruction, mainly from posts in Facebook support groups. So, I know there's a wide range of possible outcomes, from really flat, clean, symmetrical results to unfortunately lumpy, uneven, disappointing results. The uncertainty of how my scars will look has been a big source of anxiety for me. I think having satisfactory results would go a long way in helping me to accept not having breasts.

I waited for Ken to come home, which was critical because I really needed his help.

I took off the compression band, then the surgical bra... then I took a deep breath and removed the padded dressing. I'm not going to lie, I cried. The unhealed scars are ugly. My entire chest area is bruised, some areas yellow and green, other areas black and blue. My underarms are swollen and one side is numb.

But it's nothing I didn't expect. Really, the incisions look good. They're closed with surgical glue. They are clean and straight and there's no excess skin. It's what I wanted. I would recommend my breast surgeon in a heartbeat, it's clear he's got skillz.

Anyhoo, after a good cry I went on with the shower. In terms of logistics, once I took off the compression band and surgical bra, I had to figure out what to do with the drains so they wouldn't dangle unsupported from the incisions during the shower. I had read some posts in a Facebook support group about pinning the drains to a lanyard around my neck, so that's what I did, and it worked really well.

The shower felt fantastic. I took it slowly, so I had a nice, long, hot shower. What I didn't know, though, is that I should have had a shower chair...

When I stepped out, I was pat-drying as instructed, and I very suddenly felt light-headed. Ken was right there, so he helped me sit down on the toilet seat. I took slow deep breaths. My heart raced, and the feeling did not pass. I knew I needed to lie down, but how would I get to the bed?!

Ken supported me as I slowly made my way to the couch in our bedroom; it's closer than the bed. I made it as far as the bathroom door, and then I had to stop. I didn't pass out, but the light-headedness got worse, my vision got dark, and Ken later said my knees weakened. I closed my eyes, we paused for a bit, but knew I had to get to the couch (just a few steps), so we forged ahead. The second I sat down and could lean backwards, I felt better. Ken got a stool for me to put my feet up, and I felt even better. Drinking water got me feeling almost back to normal.

I sat like that for maybe like 10-15 minutes. I think the shower just took a lot out of me.

So, once recovered, I applied clean padded dressing (given to me during hospital discharge), and Ken helped to tape them in place with medical tape. Replacing the surgical bra wasn't trivial because it's elastic, and I didn't have the arm strength to pull it enough to close the hook fasteners. Ken had to do it for me, and he helped me with the compression band, too.

So now I'm fresh and clean, and also tuckered out. I think I'll sleep well tonight.

8/23/19: Double Mastectomy (DMX) Surgery

Here's a recap of my surgery experience. All the gory details!

First off, I feel fine! The pain is much less than I anticipated, so I am grateful for that. I assume there are lots of factors that are making my recovery easier than what I had expected as the worst case scenario. I did not have reconstruction (immediate reconstruction entails additional surgery); I did not have chemotherapy prior to surgery; I don't smoke (smoking ages skin prematurely, which can make for more difficult recovery); and I'm well below the median age of breast cancer patients (62), so maybe I have fewer health issues in general.

The night before surgery, my nerves got the better of me. I was up around 2:30 AM, and couldn't fall back asleep. I took my shower with Hibiclens, took 2 Tylenol before leaving the house as instructed, and we arrived at the hospital at 6:30 AM as scheduled.

I have to say, I really feel I got high quality care at the hospital. Everyone was competent and compassionate.

Ken came in with me to the pre-op area. I gave a urine sample. A pre-op nurse took my vitals and asked me lots of questions. Two anesthesiologists came by, and one put an IV into the back of my left hand for the general anesthesia. The IV in my hand felt kind of weird, it took getting used to.

Throughout the process, I was asked multiple times to confirm my name and the procedure I would be undergoing, in my own words. It turns out, it was not enough to say, "double/bilateral mastectomy"; it was important that I also state "bilateral sentinel lymph node biopsy".

I changed into a hospital gown, and they took me in a wheelchair down to the Breast Center for my nuclear medicine appointment. Ken stayed behind because much of the Breast Center is a women-only area. I met with a nuclear medicine person and a radiologist. I'm pretty sure the radiologist was the one who performed my first ultrasound, but she showed no signs of recognizing me. The two of them together decided where to inject me with the blue radioactive dye that would show the path from my breasts to the sentinel lymph nodes, which would be removed for biopsy. I got 6 injections in each breast. That's 12 injections total! Ouch. 4 injections on each side went into the breast tissue. The remaining 2 on each side were subcutaneous, and hurt a bit more.

I was brought back to the pre-op area. We met with the breast surgeon, and I really have to say, he just filled me with confidence with his calm, professional, and reassuring demeanor. I confirmed with him one last time that I was sure I did not want reconstruction, I wanted to be flat, with no excess skin; I wanted non-skin-sparing surgery.

The anesthesiologists came back around and gave me two injections in my back for a nerve block (regional anesthesia) that would numb my whole chest area.

Then it was time.

I said goodbye to Ken, and teared up. One of the nurses pushing my hospital bed talked to me with calm, compassionate, and reassuring words. I stared up at the hospital ceiling, holding back the tears, while they pushed me around corners and down halls to the operating room. I was moved onto the operating table, and they must have administered the general anesthesia via the IV around that time. I remember counting 5 people busily working around me, and that's it.

The next thing I knew, I was waking up, and it was done.

I went into surgery at 9:45 AM as scheduled. I'm told I came out at 1:10 PM, so that's just about 3 1/2 hours in surgery. I woke up around 1:30 PM. They called Ken to come to the post-op area.

The nurse told me the breast surgeon was "really happy" with the results. The breast surgeon came by and said everything had gone smoothly. I think I was still pretty out of it.

The post-op nurse talked to me about pain management, and she used the words "tolerable pain". I appreciated her perspective, because I was apprehensive about taking addictive narcotics. She said we could start with the lowest possible doses and ramp up only if necessary. She did recommend that I take oxycodone when the block anesthesia was expected to wear off, which would happen in about 8-10 hours after it was administered.

I really had to pee, so two nurses helped me up and walked me to the restroom. My post-op nurse warned me that because of the blue dye, my pee would be green! And so it was. I made a mental note to tell my son, who I knew would get a kick out of that.

I was moved to my room around 2:45 PM. They put leg compression wraps on both my calves to help prevent blood clots. The wraps automatically compressed each leg alternatingly. It felt great, like I was getting a constant leg massage. (I would periodically take them off when my legs felt too warm.)

Any time a nurse took my vitals, the blood pressure cuff was placed around my leg calf instead of my arm. I think this was to prevent lymphedema (swelling in the arms) after lymph node removal. I will need to ask the surgeon during my follow-up visit if I will always need to have blood pressure measured from my leg, or can it be measured in my arm after I'm fully healed?

At 6:00 PM I took 5 mg of oxycodone. The nurses regularly gave me 1000 mg of Tylenol on schedule, every 8 hours. I also got antibiotics via the IV, a shot in the belly of blood thinner (also to help prevent blood clots), and Colace and Senna to help with bowel movement.

Ken went home in the late afternoon to pick up the kids and bring them to the hospital. They visited for about an hour, and then Ken brought them back home. He had dinner with them, and then the kids stayed home with Ken's mom while Ken came back to spend the night with me in the hospital, in a reclining chair in my room.

It was a long, emotional day. I am glad to have the procedure behind me, and am happy to focus on recovery. I am not quite as relieved as I thought I would be, because I am still anxious about the pathology results.

I will get a call on Monday to schedule a follow-up appointment with the breast surgeon.

8/15/19: I Got Billed for the Breast Surgeon Appointment

On July 1, our health insurance changed to a high deductible plan, so instead of paying co-pays, we basically pay everything out of pocket until we hit our deductible.

7/1/19: Breast Surgeon Appointment: $363.00
With insurance, I paid: $357.07

Total cost to date: $18,087.22

With insurance, cost to me: $877.07

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.

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!

7/11/19: 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. 

7/1/19: 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.

6/26/19: The Breast Center Called Me with an Appointment Change

I wasn't home to receive the call, but they left a message.

The breast surgeon needs to re-schedule our appointment from Friday to the following Monday.

It's only 3 days, but it's 3 more days of anxiety and uncertainty while not knowing exactly what kind of cancer I have, when my surgery will be, and what my treatment plan going forward will be.

6/20/19 - 6/21/19: Phone Calls (Insurance Referrals)

It suddenly occurred to me to wonder if I need a referral for my breast surgeon appointment next Friday?

I called the Breast Center to ask. I left a message, and someone called me back first thing the next morning. She said from their office's perspective, I am all set. However, she suggested I call my insurance company, since they may require a referral for their own reasons.

I called my insurance company. They confirmed that yes, I do need a referral from my PCP to the breast surgeon. My existing referral (good for 6 visits in 1 year) to see my NP in the Breast Center uses my NP's "NPI number". I will need a separate referral to see the breast surgeon using the breast surgeon's "NPI number".

I called the Breast Center to request the breast surgeon's NPI number.

I called my PCP's referral line to request the referral (also good for 6 appointments in 1 year).

Then I suddenly wondered if I should have had a referral for yesterday's appointment with the genetic counselor.

I called the genetic counselor's office. I felt sheepish when I realized that I had called her direct line, instead of an administrative line. I figured since I had her on the phone, I could ask one question that had occurred to me: If I test positive for genes related to breast cancer, will the results be able to tell me if the gene came from my mother's side or my father's side? The answer is no.

Anyway, she gave me the NPI number for her supervising doctor (a medical oncologist).

Finally, I called my PCP's referral line again. I explained yesterday's unexpected and urgent appointment, and he was able to put in a referral (presumably back-dated) that would cover yesterday's appointment (again, good for 6 visits in 1 year).

What a lot of hassle. I'm not even 100% sure the genetic counseling referral was needed, but I figure better safe than sorry.

6/20/19: The Nurse Called Me with Appointments and Receptor Results

While we were at the genetic counseling appointment, the nurse called and left a message. I called her back and was able to speak with her.

She said she spoke with my NP and had some information for me.

First, I got an appointment with the plastic surgeon. Unfortunately, it conflicted with the appointment with the breast surgeon, so she was trying to see if my breast surgeon appointment could be changed. I told her the NP had said I could always decide about breast reconstruction later, and that I'm not sure yet how I feel about breast reconstruction, so right now I am more concerned about meeting with the breast surgeon as soon as possible. I wouldn't mind delaying the appointment with the plastic surgeon. The nurse agreed to keep my breast surgeon appointment as scheduled, she would cancel the plastic surgeon appointment, and look to re-schedule the plastic surgeon for a later date.

Second, I got an appointment for the MRI with biopsy. The date is about 1 1/2 weeks after my appointment with the breast surgeon, so we won't have the biopsy results in time for the breast surgeon appointment. I am wondering how soon we could schedule the surgery... Having both genetic testing and MRI biopsy results before the surgery would be ideal. But I'm also wondering if, after all this anxiety and stress, would I rather just get the double mastectomy no matter what, and save myself the future trouble of having to worry about cancer in my left breast? I need to think about this. The NP had said we can cancel the MRI with biopsy if I opt for the double mastectomy regardless of test results. 

Third, they got partial receptor testing results. I am positive for both estrogen and progesterone receptors. This is good news. This means hormone therapy drugs could be used in my treatment. (I can't help but think how my many years of taking birth control pills may have affected the breast cancer growth... I took a combination birth control pill that contained estrogen and progestin, a synthetic form of progesterone.) They are still waiting on the HER2 testing results.

The nurse said the first step right now is surgery. Then I would meet with a medical oncologist, who would handle my treatment after surgery. 

6/19/19: My NP Called Me

My NP called this morning, as promised.

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

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

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

The NP said the surgeon would likely recommend a mastectomy.

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

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

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

Other things we talked about during the phone call:

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

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

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

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

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

6/17/19: (Diagnosis) My NP Called Me with Biopsy Results - I Have Breast Cancer

My posts are now caught up to real time. I'll post new information as I receive it.

My NP called me on the 2nd business day after my biopsy. "The two lesions both show breast cancer."

I have to say, I did not expect this.

Both diagnostic mammograms of my right breast showed "no evidence of cancer."

After two ultrasounds on my first lump, two different radiologists identified it as a sebaceous cyst, and were unconcerned. (I am not clear on this, but is the first lump itself still a sebaceous cyst, and the cancer cells are underneath it?)

It was only because of the appearance of the second lump, which did not show up on the second ultrasound, that the MRI was ordered, which led to the biopsy, which led to this diagnosis.

Anyway. The NP called the cancer "grade 2". She said there are 3 grades. According to this site, "grade 2" means the cancer "looks less like normal cells and is growing faster".

She said the testing on the "receptors" takes more time, and we still need more information on those. Depending on the receptor testing results, the cancer may respond to hormone medication. She said a particular protein called "HER2" can help indicate how aggressive the cancer is. None of this made much sense to me on the phone, but later I read up on breast cancer hormone receptors and HER2.

The NP confirmed my upcoming ultrasound appointment, then said she wanted to add a diagnostic mammogram of my left breast to that appointment, so we have all possible testing done for both breasts.

The next step after that is to have an appointment with a breast surgeon. But I guess some things still need to happen behind the scenes, because she said she can't set up that appointment yet. Maybe the receptor testing results will dictate what kind of appointment I need with the breast surgeon.

My NP said she will call me again on Wednesday to check in, to see if I have any questions. Hopefully by then she'll have an appointment with the breast surgeon for me.

After I hung up with the NP, I thought of a question. I called her right back, and luckily she was still available to talk. I asked her if, now that I had been diagnosed with breast cancer, should I stop taking my birth control pill? She said yes, once a person is diagnosed, they do recommend stopping any hormone medication. It's not imperative to stop immediately, but as soon as I'm able to stop, I should stop. (I stopped immediately.)