The Autumn Update #2: My Breast Cancer Story

In today’s post: October is Breast Cancer Awareness month, so today I’m sharing my own story of being diagnosed with breast cancer earlier this year. Please be aware that I am not a doctor nor am I sharing medical advice; I’m just sharing my experience in hopes that it can be helpful to others. To learn more about Breast Cancer Awareness month, you can visit the National Breast Cancer Foundation.

In February of this year I found a lump in my left breast. Prior to finding the lump I’d had a couple of yearly mammograms that all came back normal. I was not doing routine self breast exams; one of my doctors had told me years ago that there’s not much evidence self exams are very effective, so I’d never gotten into the habit of doing them. I noticed the lump while showering one day and immediately wished I had been doing regular self exams, as it would have been much easier for me to tell if the lump was new. (BreastCancer.org recommends self exams for exactly this reason and shows you how to perform one here.)

Finding a Lump

The lump in my breast didn’t feel like what I’d expect a “lump” to be – a round hard bump – it just felt like one part of my breast was firmer than the rest. I figured it was likely no big deal, just a change in tissue as I aged, but I was due for a physical anyway so I decided to go in and get it checked. My doctor could feel the lump and recommended I get my yearly mammogram, but said since I didn’t have a significant family history of breast cancer and I was so young (43) it was probably nothing serious. She also told me that most breast lumps turn out to be benign (not cancer).

I was told the imaging center would call me within a few days to schedule a mammogram, but I was starting to feel nervous so I called them right away to set an appointment and mentioned I had found a lump. They said they would schedule me for a mammogram and an ultrasound at the same time–three weeks later. I ended up calling back and asking them to check other imaging centers in the area to see if there were any earlier openings and was able to get scheduled for those tests the very next week.

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The Importance of Yearly Mammograms

I’m going to pause my story here for a minute because I’ve talked to a couple of women since my diagnosis who’ve told me they’ve never had a mammogram even though they are over 40, when breast exams are recommended yearly (source: breastcancer.org). These women shared various reasons for not getting a mammogram, including worries that it would be embarrassing or uncomfortable, and lack of health insurance. I understand those obstacles. However, after my experience this past year, I’d urge anyone who is hesitant to get a mammogram to find a way to make it happen right way. Getting a mammogram probably saved my life, and it meant my cancer was diagnosed and treated early, which had a HUGE influence on the type of treatment I needed.

Attendance at regular mammography screening substantially reduces the risk of dying from breast cancer, according to a large study of over half a million women, funded by the American Cancer Society and published in the journal Radiology. Researchers said women who skip even one scheduled mammography screening before a breast cancer diagnosis face a significantly higher risk of dying from the cancer.

http://pressroom.cancer.org/MissingMammogramStudy

If you’re nervous about getting a mammogram, please know that it’s really not something you need to be scared of. The health professionals who perform the test are so kind and respectful and are skilled at helping you feel comfortable. My mammograms have not been painful, although there is a small amount of discomfort. But they are over quickly – we’re talking just a few moments total – and the benefits of detecting breast cancer early are astronomical when compared to a small amount of discomfort or embarrassment.

• If you’re nervous, learn more about what to expect at a mammogram with a free e-book from the National Breast Cancer Foundation
• If you don’t have health insurance, scroll down on this page at Susan G. Komen for help finding low-cost breast cancer screening in your area.

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Breast Cancer Diagnosis

A week later I went in for my mammogram and ultrasound. Due to Covid procedures, I went in for the testing alone. I felt somewhat calm during the mammogram, but by the time I had the ultrasound I was nervous and teary. The ultrasound tech was so kind and caring. After she performed the ultrasound she sent the results to a radiologist who immediately reviewed them and came to talk to me. He told me that from what he could see the mass required further testing so I would need to come back to have a biopsy. I asked if they thought it was cancer and they told me they could not make a diagnosis based on an ultrasound…but that there was a very good breast cancer surgeon right across the street. After the radiologist left the tech confirmed that she thought things did not look good. I asked her how soon she could get me in for the biopsy and she was able to schedule it for a few days later.

I left the office and walked to my car to call my husband and tell him I probably had breast cancer. I had to stop crying before I was able to drive home.

That was the beginning of the hardest part of my breast cancer story: the unknown. I had the ultrasound on a Friday afternoon and came home feeling fairly certain I had breast cancer. I had a biopsy done Monday with the same radiologist, who again seemed quite certain it was cancer even though he said we needed to wait for the results to know for sure. They said results could take up to three days, but my doctor called me the next day to review them with me. The biopsy showed that I had both Ductal Carcinoma In Situ (cancer that begins in the milk ducts and hasn’t invaded the breast tissue) and Invasive Breast Cancer (cancer that had spread to the surrounding breast tissue). He told me he would immediately refer me to a surgeon because surgery is generally the first treatment option for breast cancer. We talked about the fact that breast cancer has high survival rates, and he said the surgeon would give me more information about the typing and staging of the cancer.

Imagining the Worst

So then we waited. It was (luckily) only two weeks between the time I felt fairly certain I had cancer (at the ultrasound) and appointment with the surgeon, but those were the two longest weeks of my life. The ultrasound tech had mentioned that the tumor measured 5 cm, and when we googled that what we saw looked pretty bad, like it would be a stage 3 at least. I could not stop thinking about the fact that our youngest child is only ten years old, and wondering if I would be here for her high school graduation. I kept telling myself that if I could just be around for eight more years, I could take what came after that.

I didn’t want to spend time thinking about the worst case scenario, but I found I wasn’t able to stop thinking about it. It’s like my brain needed to have some plans in place in case we got really bad news when we met with the surgeon. My husband and I had long conversations about things we hadn’t considered before. I found myself needing to talk through possible outcomes and I was incredibly appreciative of the friends that listened to me as I did. I have a close friend who has gone through breast cancer herself, and I was struck that as I told her how worried I was she didn’t try to reassure me. She just nodded and let me be worried, and it turns out that was exactly what I needed. I didn’t want someone to tell me not to worry – I wanted people who would let me experience the fear and be willing to stand with me through it. Listening to me talk through the scary things my brain was churning out was such an incredible gift that my husband, friends and family members gave me.

I also spent a lot of time thinking about what sort of life I wanted to live if it was going to be shorter than I’d expected. I was grateful to realize that for the most part, I’m already living the life I want, which was a beautiful realization (and one I try to remember when I’m elbow deep in dirty dishes).

During this time we also told our children about my diagnosis. We have five kids that range in age from 10 to 20 years old, and that was a hard conversation to have. We told them that they could ask us anything, no matter how awkward it might feel. Questions ranged from what’s the worst case scenario to would we still be able to go to Hawaii in August, and would my medical bills end up being a financial problem. (Note: We are so so fortunate to have good health insurance. My heart breaks for those who don’t.)

We were grateful our kids were willing to ask questions and encouraged them to reach out to their close friends for support if they wished. I also purchased Mom + Me Journals for my two younger children to give them a way to write down things they were uncomfortable talking to me about.

Meeting with the Surgeon

At the end of those two scary weeks my husband and I were able to meet with my breast surgeon. She was incredible. She was able to look at the tumor on an ultrasound and confirm that while it was 5 cm total, the portion that was “invasive” was likely much smaller. Most of the tumor was “in situ” or located in the milk ducts, which was great news as it indicates an earlier cancer that is easier to treat. She staged the cancer at a probable Stage 1, and scheduled me for a breast MRI that later confirmed what she’d seen on the ultrasound.

Next, she presented us with my surgical options. The first surgical option is a lumpectomy, in which the surgeon attempts to remove just the cancerous lump while leaving most of the surrounding breast tissue. A lumpectomy is less invasive, but does sometimes require additional surgery if post-surgery testing on the tumor shows it wasn’t completely removed. Additionally, a lumpectomy requires radiation treatment of the surrounding tissue after surgery, a process that often involves treatment every week day for three to four weeks. Chemotherapy may also be required depending on whether the cancer has spread to the lymph nodes and what genetic testing of the tumor indicates.

The other surgical option is a mastectomy, which is a complete removal of all breast tissue. Insurance companies in the United States are now required to cover reconstruction if they cover a mastectomy. Reconstruction after a mastectomy happens in two parts; the first part at the time of the mastectomy, and the second part after other treatments (radiation and/or chemo) are completed. Generally if you have a mastectomy you do not need radiation unless surgery reveals the cancer has spread to the lymph nodes. Chemotherapy may or may not be required.

Deciding on a Bilateral Mastectomy

Both surgical options have similar survival and recurrence rates, but my surgeon indicated she’d learn toward doing a mastectomy based on the position of the tumor and the size in proportion to my breast size. Even before she made that recommendation I felt that a mastectomy would be the best choice for me. We asked whether it might make sense to do a bilateral mastectomy, meaning she would remove both breasts, in order to lower the chance of a recurrence in the other breast. She said that wasn’t medically necessary and that the chance of a recurrence was fairly low. However, considering my age, she also said it would certainly be medically appropriate to do if I wanted to as it would likely offer more peace of mind going forward.

Breast cancer is the second cancer I’ve had; I had a tumor on my kidney when I was a baby that was removed surgically. Being 43 and on my second cancer I decided a bilateral mastectomy with reconstruction was the option I was most comfortable with. In order to get it approved by my insurance I had genetic testing done and I was thrilled to find that I do not have any of the genes associated with breast cancer. I also met with an oncologist prior to the surgery to talk through possible treatments post surgery.

Surgery and Results

After we met with the surgeon I felt so much better about my prognosis. We had a surgical plan and it appeared that my breast cancer had been found early and would be very treatable. I was still very nervous about the surgeries ahead and whether I would need radiation and/or chemo. There were a lot of “what ifs”, but I was able to stop thinking worst case scenario and start feeling like things were going to be ok.

I met with the surgeon mid March and had surgery at the end of April. I’ll write a separate post talking about my mastectomy experience since this one is getting long. Surgery went well, as did the recovery. It took about four weeks before I felt able to start light exercise again and six weeks until I felt pretty much back to normal.

The really good news is that my lymph nodes were clear of cancer and the testing they did on the tumor indicated it was very unlikely the cancer had spread. As a result, I didn’t have to do either radiation or chemotherapy. That was an incredible relief.

Reconstruction

Not needing chemo meant I was able to have my reconstruction surgery at the end of August. It can be a very traumatic experience to have your breasts removed, even when it’s done as a life saving measure. I was fortunate that my strongest feeling was relief that the cancer was gone; however I’m sensitive to the fact that many people experience a fair measure of grief after a mastectomy. For me, working through the reconstruction process was more emotional.

In the past few years I’ve really embraced the philosophy that my body is an instrument, not an ornament (from the book More Than a Body by Lindsay Kite and Lexie Kite). I’ve worked to teach my daughter that what her body can do matters so much more than what her body looks like. So meeting with a plastic surgeon and discussing reconstruction options was an emotional process that brought me some mixed feelings. My plastic surgeon has been wonderful; she has understood my concerns and worked to help me be comfortable with the process. I am incredibly grateful for the reconstruction surgery and the fact that I have insurance that covered the cost.

There are a couple of options for reconstruction after mastectomy. I’ll write more about my reconstruction experience in another post.

My Breast Cancer Story: The Future

Here we are mid-October and I’ve recovered well from my second surgery. Eight months after finding a lump, my cancer experience feels like it is mostly over.

Moving forward I continue to meet with my oncologist every six months. There’s actually no way to be completely certain that there aren’t some cancer cells still hanging out somewhere in my body. If there are, the cancer could recur somewhere else in the future. To help ensure that doesn’t happen, I am taking Tamoxifen, which is a medication that stops my cells from absorbing estrogen. Because my breast cancer was estrogen-receptive, this medication should stop any cancer cells that might still be around from replicating in the future. Tamoxifen can cause tough side effects for some people, but so far I am tolerating it well.

Because I had lymph nodes removed, I also get regular screenings to see if I’m developing lymphedema, which can lead to extreme swelling. If this happens, I may end up wearing a compression sleeve on my left arm. My numbers have gone up and down a bit in the past couple of months. Currently they are down, but this might be something I’ll deal with more in the future.

I still cannot believe how fortunate I’ve been to get through this with things going as well as they did. I’m keenly aware that many people have a much more difficult experience than I’ve had and I feel so much tenderness and compassion for them. It’s almost unbelievable to me that things have gone so well and I can’t explain why. I am extremely grateful.

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One thing I do know is that early diagnosis makes a huge difference. So please, get regular mammograms if you are over 40 (or earlier if you have family history or other risk factors). If you feel something in your breast and aren’t sure if it’s anything to worry about, please get it checked by a doctor. I know both those situations can be scary and it might feel easier to avoid thinking about it, but please choose to do what you can to keep your body safe. Your future self (and your family and friends) will thank you.

with love,

Autumn