Every month on the first of the month, there’s a social media movement called #feelitonthefirst to remind women to do their self breast exams.
I haven't participated before, and I'm participating now with an extra reminder: don't just to do your self exams, also trust your instincts. My cancer had no lump, and neither did my mom’s. If something doesn’t feel right, on a gut level, get it checked out.
We don't often hear stories like mine, or like my mom's. Most people think cancer = lump. Awhile ago, a post using lemons to show visual signs of cancer went viral, and that was really helpful in raising awareness. But I had no visual signs, nothing I could feel with my hands - and I realized that I haven’t really shared exactly how I found my cancer and what my diagnosis was like.
So. I will share the entire story, because I want to make people aware that I could, at any point, have stopped advocating for myself. I could have said, “oh, I’m sure it’ll be okay.” And the end result would have been very, very bad.
I say this not to pat myself on the back, but to give you — my friends — any amount of prompting you need to listen to your bodies, do your self breast exams, listen to your intuition, and DO NOT PUT OFF GOING TO THE DOCTOR. Yes, when I was screened I got bad news. I had to face a lot of scary stuff. But if I’d avoided it, if I’d delayed it, I would have had to face all that scary stuff — and I would likely have died, too.Early detection is so, so, so important.
My whole life, breast cancer has been a topic of conversation in my family. Before I was old enough to really understand what it meant, both of my grandmothers, my only aunt on my dad’s side, and my only aunt on my mom’s side all faced breast cancer. Both of my aunts had premenopausal cancer (considered more aggressive) and it tragically claimed my aunt Lois’ life in 1983. She was 41.
My doctors always told me that I’d need to start getting mammograms 10 years before my Aunt Lois' first diagnosis; by that calculation, my first mammogram should have been at 29. But when I asked my doctor to begin my early screenings, I was told that recommendations for early detection had changed; research showed that increased screenings resulted in mis-diagnosis & over-diagnosis, which was dangerous. The new recommendation was that, unless you had a first degree relative (ie, a mother or a sister) who had cancer, you should get mammograms at 40 like everyone else. My dad had been screened for the BRCA mutations (a gene more common in Ashkenazi Jewish populations that puts carriers at high risk for breast and other cancers), and came up negative. I was told that I shouldn’t get early screenings.
I accepted this until 2016, when my mom was diagnosed with post-menopausal breast cancer. I was 33 when she went through radiation & a lumpectomy, and I again asked my doctor if I could begin early screenings. “That’s a good question,” she said, “I’m not sure.” In November of 2016, we went to Hawaii to celebrate the end of my mom’s cancer treatment, with no idea that it was our last big hurrah before the Olsher Family CancerFest really swung into high gear.
At my yearly exam in March of 2017, I asked my gynecologist about early screenings again, at which point she personally put in a referral for a genetics screening; I had it done within two weeks. Let’s pause here for a moment: this is the second time I directly asked for early screenings, and I only asked because my mom had been diagnosed. As you will see in a moment, my mom’s first breast cancer diagnosis saved my life.
I was tested for around 80 genes and came up negative for all of them. Because of my family history, however, I was still considered high risk and was placed in the “high risk cancer clinic” at Kaiser in San Francisco, headed up by an incredible breast surgeon by the name of Dr. Samantha Langer. Dr. Langer was scheduled to lead a group for women with high risk for breast cancer, but the class was canceled last minute because Dr. Langer was called into an emergency surgery. I asked to be rescheduled, but her schedule was so busy that I was given the option of waiting for the next group class, or seeing Dr. Langer individually. My gut told me to see her individually. This was April of 2017, and I was 34.
In June of 2017, just two months later, I started to have a strange sensation in my left breast. It felt sort of like a tickling sensation, which I described as “milk being let down” from my years of breastfeeding my daughter. The sensation went from the side of my breast to my nipple. I felt no lumps, but I had a strange gut feeling that I should get it checked out. "I'm sure it's nothing," I thought, but I made an appointment with my OB/GYN and was in her office within days, on June 8. She didn’t feel any lumps.
On June 26, I had my scheduled individual appointment with Dr. Langer. As a reminder, this is a breast surgeon who does early detection for a living. She told me that I had a 20% risk of developing breast cancer in my lifetime due to my family history alone. She told me that I likely carry a genetic mutation for cancer that hasn’t been discovered yet, given that I was the only woman in my family not to develop breast cancer. She told me that I should be screened early. She told me I could opt for a preventative double mastectomy, if I wanted. She told me that I’d have breast MRIs and mammograms alternating every six months. She warned me about the number of false positives, and that at some point, it was likely that someone would see something “funny” on a screening and I’d have to go back for a follow-up screening. She warned me that this can be very anxiety provoking.
Then I asked her to examine my left breast, because that odd sensation never went away. She didn’t feel any lumps.
On Friday, July 7, 2017 I had my first screening - a breast MRI. Then the following Monday, July 10, Dr. Langer personally called me. “As I warned you about, they saw something ‘funny’ on your MRI, and I’d like to schedule you for a diagnostic mammogram and ultrasound on Friday.” Here's what that means: they'd seen something not right ("funny") on the MRI, and now were planning to use other imaging techniques to see if the "funny" thing showed up again, or if it was an anomaly with the MRI. If they saw the "funny" thing on the mammogram and ultrasound, too, I'd have a biopsy. For what it's worth, lots of women get all the way to the biopsy and do not have cancer.
I remember sitting at the conference table at Red Tricycle, where I was the Marketing Director, telling my CEO and our Editorial Director that I'd be out of the office that coming Friday afternoon. That I was sure it was nothing, but I was a little nervous.
The diagnostic mammogram was no big deal. I'd never had a mammogram before, and it didn't hurt. The mammogram tech took a few extra images than she would have for a regular mammogram, told me the doctor would interpret it for me, and then sent me to wait for the ultrasound tech.
Two ultrasound techs, who were extremely kind, examined my breast using the ultrasound before the radiologist came in. They pointed out various "calcs" they saw on the image (which I now know means calcifications - white spots on the image that are totally normal but can sometimes mean early stage cancer). Then the doctor came in and quietly examined my breast in the same way the techs had. I said, "Dr. Langer said you would know if I need a biopsy or not. When will you know?" He was very grave when he said, "I already know." He set down the ultrasound probe and said, "do you want me to be frank?" I looked at him and said, "yes, please."
"What we are seeing can be nothing other than cancer."
What they saw in my screenings was not “funny.” It was cancer. Cancer that took up such a large part of my left breast — from under my arm all the way to my nipple, exactly where I’d felt those sensations — that I would need to have my entire breast removed, no matter what. A mastectomy. There was no way to only remove the lump because I had no lump. PLEASE HEAR ME: I HAD NO LUMP.
My initial diagnosis was DCIS (ductal carcinoma in situ, or cancer cells in the milk duct) with no evidence of invasive cancer (cancer that has spread outside the duct). Stage 1, maybe even Stage 0; but because of the size of the area involved, they wouldn’t know my stage for sure until they removed my entire breast during surgery and had it analyzed by a pathologist.
My story does not stop here, though.
(I know, you're probably like, "Sara, this story has about 3,000 words already, how is it not over and why in the heck are you giving us every detail?!" And the reason is this: Women need to know.Women need to know that not every cancer starts with a lump in the shower. I want you to know every bit of this because it could save your life, or the life of someone you know. When you think to yourself, "I think I heard about a woman once who had this weird tickling sensation - maybe I should get that checked out." Or when a friend of yours casually mentions in 10 years that she has a strange sensation - you can say to her: "Sally, go get that checked out right this minute."That's why.)
So, back to me: here I am, with cancer in my left breast and no option other than having my breast removed. I wanted to have my surgery done by Dr. Langer in San Francisco. I had a feeling about her and I wanted her to do it. I opted for a double mastectomy. The left mastectomy wasn’t an option; the right mastectomy was preventative. I never wanted to go through this again.
My surgery was scheduled for September 14, 2017. During the time between my diagnosis and surgery, I continued to feel that sensation of milk being let down, and I started to have another gut feeling that the cancer was changing. I felt where the cancer was and still felt no lump - but it felt a little different. I can’t describe how; it just felt like the lumpiness of my breast was lumpy in a different way. I wouldn’t have noticed it, I don’t think, if I hadn’t known there was cancer there. To be clear, I was not zen about this. I was anxious. But I also knew that the only thing that could be done was already scheduled to be done; they couldn’t move my surgery up. So I waited, knowing that we would know a lot more about the cancer once the surgery was over.
When I woke up from my double mastectomy, my mom was there. I asked her if the cancer had spread. She said, very sadly, that yes. It was in one of my lymph nodes.
For those of you who aren’t as well versed in cancer as I am now, the lymph system is essentially the door to the rest of the body. It is what helps your body drain its waste, and once a cancer cell gets into the lymph system, it can start to reproduce in other parts of the body. Cancer that has spread to other parts of the body is called metastatic, or Stage IV cancer. At this time, there is no cure for Stage IV cancer; there is only living with it until your body can’t live with it any longer.
So to put a point on it: My cancer was spreading before it was forming a lump anyone could feel. After the pathology came back, they found a 1.2 cm lump. I had a teeny, tiny tumor, the size of a pea, and cancer that was already spreading to the rest of my body. I strongly believe that, had I waited to find a lump, it would have been too late. As it was, I was Stage 2a.
Fast-forward to January of this year; I am in the middle of chemo treatments, and my mom, who has moved in with us to help care for my family, mentioned a strange “burning” sensation from the top of her breast to her nipple. I will not tell her story as it is not mine to tell, but she advocated for herself as I advocated for myself. She refused to accept “no” for an answer when she was told by a radiologist “we don’t do mammograms for pain” and she had a follow-up screening after a mammogram came back negative, in part because her gut told her to. Keep in mind, she'd already had cancer in her left breast, and the first time was nothing like this - this was a new experience for her. As a result of her persistence, she was diagnosed with aggressive breast cancer in her right breast and is currently undergoing chemo herself. (If you are the praying type, please keep her at the top of your list - this has been brutal for her.) And also: SHE DID NOT FEEL A LUMP.
Breast cancer looks like a lot of things. It feels like a lot of things. But sometimes, it doesn't look like anything. You can't feel anything with your fingers. Everyone gets breast pain, so I'm not saying you have cancer if you have pain. I am saying that you should never listen to someone who says breast cancer doesn't cause pain. Because sometimes it does.
I recently passed the one year anniversary of my cancer diagnosis. On that day, we moved to new city. We began blending our family with my boyfriend’s and looking to the future. We are doing this because I will survive breast cancer. I will survive cancer because of all the times I could have given up and I didn’t. Instead of facing a very high survival rate, I could be planning my daughter’s future without me in it.
Follow your intuition.