On September 6, I posted the following on social media:
The American Cancer Society estimates that there will be about 287,850 new cases of invasive breast cancer diagnosed in women in 2022. I’m one of them.
I received my diagnosis last week. Treatment is still being determined pending the results of more tests. But I may be starting chemo next week.
I’m not posting this for pity, but to let you know what I will be dealing with for the next year. Being the journalist that I am, I will naturally be blogging about this as a way to keep people updated and to help myself cope. Stay tuned for more details, including how it was discovered and what treatment will look like. I’m in the process of setting that up, so watch this space.
In the meantime, just send your love and good thoughts, and say with me: FUCK CANCER!
Blogging
I’d thank you for your patience in waiting for me to set up this blog (or more accurately, for Aaron to set it up, with decisions for me to make along the way like how public to make it), but that’s assuming a lot. Whatever brought you here — whether you want to stay up to date on my journey and/or learn about this whole new world I’m stepping into or if you’re just bored out of your skull at work — welcome! Even if I’m just typing into the void, it’s helpful for me!
Discovery
While washing my arm in the shower in July, I felt a long, hard mass in my right breast. It feels like a clogged milk duct, even though my nursing days are long over. It didn’t seem like the kind of “lump” that’s always associated with breast cancer. Once I realized it wasn’t going away, I scheduled a mammogram.
In August, I had that mammogram. My last mammogram prior to that was in December 2021. The radiologist compared the scans to make sure they hadn’t missed anything (they hadn’t). The scans were concerning enough this time to be followed by a breast ultrasound. When I saw the two adjacent masses on the screen, I had a feeling this was no benign cyst. Sure enough, the radiologist admitted it was highly suspicious for cancer.
An excerpt from the report that I received the next day:
A metallic triangle annotates the patient’s palpable area of concern within the right upper outer quadrant which corresponds to two immediately adjacent, markedly irregular and spiculated, high-density masses which collectively measure 4.0 cm.
Yeah, I didn’t know what “spiculated” meant either. According to the National Cancer Institute, it’s a lump of tissue with spikes or points on the surface. I’m not sure how often it’s malignant, but it sure didn’t sound good!
Biopsy
As a result, I had a biopsy. Of course Aaron had to leave the day before to take Samara back to college. I almost went by myself, but one of my oldest friends (old as in we’ve been friends since fourth grade, our fifth grade feud notwithstanding!) insisted on taking me. This was my first breast biopsy, and I have to say it wasn’t as bad as I was expecting. I barely felt the numbing shot. The most “uncomfortable” part was when the doctor clipped the tissue. During the procedure, one nurse remained on my left to give me a play by play and hold my hand. For those who don’t know me, I’m deaf and lipread, so I had requested they wear clear masks when I made the appointment, which also made the experience easier.
The radiologist had told me biopsy results would take two days. At the biopsy, however, I was told it could take 4-6 business days. Of course my biopsy was on a Friday morning!
Backtracking a bit — after I received the mammogram and ultrasound report, I realized I knew an expert. Dr. Adam Brufsky is a member of my synagogue and we served on the board together. I emailed him to let him know that I might have breast cancer and ask for his guidance on next steps. He said to come see him, and helped arrange an appointment.
As the appointment approached, I got increasingly nervous that my results wouldn’t come in time. I emailed Dr. Brufsky asking if I should reschedule the appointment. He said to contact his office by mid-morning Wednesday to see if they had the results. Before I did that, I called the biopsy nurse. Good timing — she’d just gotten the results.
Invasive ductal carcinoma. The most common form of breast cancer.
Even though I knew this news was coming, it was still a shock.
Returning to Magee
Thankfully, Aaron has been able to rearrange his schedule so he can accompany me to all these initial appointments. We went to my appointment with Dr. Brufsky as planned. It was strange returning to Magee-Women’s Hospital, where I had been many times. Just before I opened the door to the Breast Cancer Center on the fourth floor, I said to Aaron, “Guess this is me now.”
First, we met with two nurse practitioners, who felt the mass and asked some questions. Then it was my turn to ask questions. You can bet I had a long list!
Prior to this, I kept changing the goalposts. If I just needed a lumpectomy, I could handle that. If it was a lumpectomy and radiation, ok fine, I’ll deal. But chemo? That hadn’t entered the equation.
When Dr. Brufsky came in, the first words out of his mouth were, “You’re going to survive this.” Obviously, this is assuming the cancer hasn’t spread, but initial signs are good. At the breast ultrasound, they checked my lymph nodes, which were clear.
My cancer was referred to as aggressive; I think because of its size and how fast it grew. While we’re still waiting on the rest of the pathology results, including the receptor type, Dr. Brufsky said he suspects I have triple negative breast cancer.
Remember those goalposts? One of mine was, “As long as it’s not triple negative, I’ll be fine.” That’s because all I knew of triple negative was that it was harder to treat, can return, and it was what my sister-in-law’s mother died of.
But it turns out Dr. Brufsky specializes in TN breast cancer. He told us the FDA approved a new drug that’s effective for this receptor type (back in July 2021). I later found out from my sister-in-law Staci that her mom was actually on it for four years as part of a clinical trial. She had no side effects, but unfortunately her cancer was too far along.
Dr. Brufsky also said that TN tends to come back in the first few years – if it comes back. Once patients hit the five year mark, they’re usually in the clear. I plan to ask him more about this if indeed I am TN.
He outlined the possible treatment protocol, assuming I’m TN. If I’m not, then they’ll adjust. He said I would likely have chemo treatments once a week every three weeks for four cycles, followed by some kind of surgery, and then additional treatment. His thinking is that shrinking the tumor will help the surgeon get it out, but the surgeon might want to do things in a different order. They asked if I’d want a port, which goes under the skin and makes it easier to draw blood and get treatments. I said I probably would (and later, upon learning more, decided yes; everyone says it’s worth it).
After two weeks of chemo, my hair will thin, Dr. Brufsky warned. Within a month, it will fall out. He mentioned some people use a cooling cap that’s supposed to help preserve hair. I have a friend researching it and plan to ask more about it, but I’ve heard mixed things. At this point, I don’t know if it’s worth it, but I’ll decide once I have more information.
Tangent: Hair Loss
If I do lose my hair, that will be difficult. I love my curls. I know many people end up with curly hair after chemo. But what if their hair is already curly? Does it get curlier? If it comes back all silver, I’m fine with that. But I’d better get those curls back!
I have the additional element of my cochlear implant. I avoid hats because of where the headpiece sits on my head. I’ll have to experiment with hats, scarves, etc., and see what’s comfortable and what works. I don’t want to go the wig route, though I’m thinking I’ll get at least one fun-colored wig.
Telling People
Thankfully Aaron was taking notes, because the rest of the appointment was a blur. I was a little shell shocked, to say the least! This was a lot. A lot more than I was expecting.
It was difficult telling my family. I call myself a Surviving Child, since I lost my only sibling 20 years ago. I’ve always felt that nothing could happen to me, because I’m all my parents have left (besides my kids, of course!). There is no cancer in my immediate family. I have one cousin with the BRCA gene and another who had breast cancer, but we suspect this is from the other side of the family.
The next day, I had book club. We’ve been together for 17 years and they’re among my closest friends. I wanted to tell them in person; that was hard. Then the next morning I told work. Naturally, I was emotional both times. But as my rabbi pointed out, saying it out loud makes it real.
Naturally, everyone has been wonderfully supportive! It’s one reason why I went public yesterday. I feel bolstered by everyone’s love and support.
Next Steps
I’m in the most difficult phase right now, waiting for more results. A normal diagnostic tool is to have a breast MRI, but I can’t have a MRI because of my cochlear implant. Ok, technically, the CI surgeon could go in and remove the internal magnet, but it’s not worth it. I confirmed with my CI manufacturer that even a breast MRI isn’t safe. Apparently I can’t even be in the same room as a MRI machine – even if it’s off – because it’s too strong. The implant I got in 2006 is not MRI safe, but the newer version implanted today is. Not helpful for me right now!
Dr. Brufsky didn’t seem fazed by this. They have patients with pacemakers who are prohibited from getting MRIs also, so they utilize other methods. Thankfully PET/CAT scans are safe and mine is scheduled for Friday.
Tomorrow morning, I’m meeting with the nurses to find out the rest of the pathology (is it triple negative?) and learn about my chemo treatment. I’ve been trying not to think about this too much. Normally I’m good at compartmentalizing, but last week I wasn’t doing too well. I barely slept and my stomach was a mess. I had planned a girls’ weekend with one of my best friends, and almost backed out of it because I just wasn’t up for it. But I went, and am so glad I did. It was a good distraction.
In the meantime, I needed to schedule a surgeon. Several people we know gave strong recommendations for the same one and her bio immediately appealed to me. Because I cannot get an MRI, it’s very important to me to have someone who is very experienced and highly skilled. Thanks to a relative who went above and beyond to help, I got an appointment with her for next week.
I don’t know when I will get my port installed, or when my first chemo treatment will be. Dr. Brufsky wants me to start as soon as possible. It would have been this week if he’d had his way, but those pesky labs and the PET scan scheduling take a long time! I always said if I ever got cancer, I wouldn’t handle chemo very well. Who knew I’d be learning firsthand whether that will be the case? Thankfully, there are better drugs these days! While I’m dreading this part of the process, I want to get it going already! I want this OUT of me before it spreads!
Support
One thing I’ve been doing to preserve my sanity is avoiding Google searches. We all know it’s dangerous to “do your own research,” especially when it comes to health stuff. As a journalist who received an investigative journalism award upon receiving my Master’s, it hasn’t been easy. Delegating research tasks to others has been a load off.
For similar reasons, I’ve avoided looking up various organizations and online support groups. If someone vets one and tells me there aren’t any sad/horror stories and people making stupid decisions, then maybe I’ll check it out.
It’s amazing how many people I know who have had breast cancer. Some I didn’t know were survivors. I appreciate those of you who shared your survivor status; knowing it’s been 40, 17, or 10 years gives me hope. I appreciate you answering my questions about your experiences, sharing your advice, tips, and paying it forward. It means so much.
I’ve always been an open book; this will be no exception. I know not everyone can share in this way; we’re all different in how we process, deal, and experience this journey. If I need or want information, I will request it; no need to tell me about your neighbor’s sister’s daughter or about foods that will impact cancer.
This still feels surreal. I expect it will for a while. I really didn’t need something else to advocate for, did I?
Thank you for keeping me company along the way!