What it’s like to be newly diagnosed

Spoiler alert: it’s not fun!

There was waiting for the initial biopsy results, waiting for the appointment with my new surgeon (love her), and waiting for more results to inform the potential treatments. All I want is to begin the process of getting the boob invaders out. Cut ’em off? Cool. Point some rad radioactive waves at my chest? Bring it on. Poison the bad cells all over my body? Yes, I’m ready. Hair grows back, right? I just don’t know the treatment yet, but I’ll share what I do know so far!

I met with Dr. Dudak on Monday, September 14th. I came armed with a dozen questions and accompanied by my handsome husband, Eric, who is wonderfully supportive and who has been my rock since the “C” word became a reality in our lives.

She is no-nonsense. She is experienced. She knows her stuff. She drew a picture of my boob on the thin paper that covers the examination table, explaining the receptors and making it clear that there is nothing clear-cut about breast cancer treatment. I liken it to a really insane flow chart:

lots of “if’s” and “then’s”

What I know:

The cancer is hormone positive, which the doctor reassured me was a very good thing for the reasons stated in my last post. Yay!

I also found out that I have invasive lobular carcinoma, not ductal. Ductal is THE most common breast cancer, lobular is the second most common, initiating in the milk-producing glands. Dr. said no changes in treatment and prognosis does not change.

She did a thorough clinical examination and confirmed that none of my lymph nodes in my neck or underarms felt enlarged or in any way funky. Double yay. Early stage it is.

The lesions have been classified as “grade 2” which means they are not agressive, but not super slow growing. That’s fine.

The MRI I will have on Friday will show the physiology of what’s going on inside the breast, so that will answer many questions regarding details about the size and shape of the lesions.

I will have a meeting on Wednesday of next week with my full “Oncology Team”. I’m excited about this! I will meet the medical oncologist (the doctor who will oversee chemo if I need it; he will also be the one to prescribe the hormone targeting medication), the radiation oncologist, a plastic surgeon, a psychologist, and a nutritionist.

What I don’t know:

It turns out the HER2 status of the cancer is not very clear from the original test done on the biopsy. Dr. Dudak is ordering a special test called a FISH test that is very sensitive to the HER 2 hormone status. Because I can’t say whether I’m HER2 positive or negative yet, there are many open ended questions surrounding treatment. (update: I got a call from Dr. Dudak telling me it is definitely HER2 NEGATIVE. This is great, great news!)

The nurse took a blood sample from me for a full panel of genetic mutations. Because of my age, this is one of the first things that must be ruled out.

Dr. Dudak also ordered a test called a mammaprint, which does a genomic assay on the lesions. This basically means that the test will give me a score that shows the cancer’s potential future recurrence. A high score will most certainly mean chemotherapy.

So, the question of whether I need surgery and no chemo, or surgery first and then chemo, or chemo first and then surgery (with a touch of radiation for shits and giggles) is still up in the air, but these questions should be answered when I meet with my bewb dream team. Yes, that is what I shall call them henceforth.

Being newly diagnosed is confusing as hell.

The diagnosis

(and why it is important to advocate for yourself….)

On September 1st, I got the “situation” in my boob biopsied. Finding the doctor to do the biopsy was primarily decided by my insurance network. The original doctor my OB-GYN referred me to did not take my insurance (thanks, HMO). So, the office referred me to a surgeon who seemed amazing on paper. Harvard Medical School, Sloan Kettering Fellowship… To make a long story short, despite the fact she herself seemed knowledgeable, I was not comfortable with the medical practice. She only had one assistant/office manager, and the ultrasound machine had broken, so a traveling ultrasound woman with an ipad and a wand came into the consult.

On the actual biopsy, she had prescribed a Valium so I could be as relaxed as possible. I think she did a good job getting the sample, no complaints there. However, I left that appointment being told that I would get the results in two days. Fast forward to 8 days later, on Wednesday, September 9th, I had to physically drive to the pathology lab to pick up my results. (more on the results later…)

I have always been an advocate. An advocate of my children, an advocate of my students, but rarely had I ever had to advocate for myself. The biopsy was on a Tuesday. Thursday (2 days later) came and went. On Friday, I called the office, but the office was closed and the answering service informed me that the office would be closed for four days for the Labor Day weekend. I was pretty anxious and disappointed that I had to endure the whole weekend waiting… Tom Petty’s “The Waiting” kept running through my mind all weekend; the waiting IS the hardest part, even if he was singing about chasing some woman.

On Tuesday, I assumed the office would open. I left three messages with the answering service. It was torture! By then, I had already made the decision to switch to a different breast surgeon. I did my homework and found someone who came personally recommended by a former patient, and she attended Duke for undergrad and medical school. (Yay! How can a fellow Blue Devil NOT be awesome?) The new doctor’s office had me email them all my medical reports up until the biopsy pathology report. All I had to do was get that.

Wednesday rolls around and I finally got through to the office; I was getting ready to drive there. The assistant couldn’t locate my results, but she did let out the name of the pathology lab that my samples were sent to. I ended up driving directly to the lab and getting my pathology results in person. I’m glad I called, I’m glad I persisted, and I’m glad I took the initiative to call the lab and insist on getting my medical records. Maybe a younger, less assertive version of me might have waited and waited… but this 44 year old mom who doesn’t put up with any bullshit anymore was not going to sit around waiting to be told she had cancer.

Invasive mammary carcinoma. Estrogen receptor (ER) positive, Progesterone receptor (PR) positive Human Epidermal Growth Factor receptor (HER2) equivocal.

The bad news in the pathology report is that I do have cancer. It’s invasive. If I did nothing about it, it would eventually spread through my body and kill me. Cancer is an evil awful monster.

The good news is that the cancer I have is the most common kind of breast cancer there is: hormone receptor positive. This means that through decades of research, scientists have developed very specific targeted medications and treatments. This cancer is very treatable, not terribly aggressive, and I will be around for a while. The next step is to meet with my Dr. Dudak, my new breast surgeon, and map out a treatment plan to get this thing the fuck out of my body.

Today, I am GRATEFUL for screening mammograms.

So I have a boo boo in my boob*…

…Or, technically, three.  Three in a row.  A tumor and its two little satellites. Has this blog become TMI already? 

Thank you for caring enough about me to visit my breast cancer update blog.  Or maybe you’re here because you’re just morbidly curious.  That’s okay, too.  I can get verbose when I write, so I won’t take it personally if you just skim or skip entire posts or paragraphs. (How the hell would I know, anyway?) 

So, on August 4th, I went on my merry way to my annual well-visit with my OB-GYN.  She’s in her 30’s or 40’s, kinda sarcastic, and super smart, and I would totally be friends with her if she didn’t, you know, take samples of my cervix every summer.  At the end of the appointment, we decided it was time for a routine mammogram. Since turning 40, I had already had two, at ages 40 and 42.  It was time.  

The following week, on August 11th, I walked into the Lynn Women’s Health Institute, the same place I’d had my previous mammos done.  Now, those of you reading this who have had a mammogram know that it’s not the most pleasant of experiences.  Your boobs basically get smooshed into a plexiglass sandwich while a helpful technician pushes you into this giant machine and positions and repositions your boobs into this sandwich.  It doesn’t hurt too much, but it definitely doesn’t feel good.  However, this place makes the whole getting a mammogram thing feel like a spa day.  You get changed into a comfy robe, and sit in a waiting room with little waterfalls and new age music.  Anyway, this was my third trip to this boob-smooshing-spa, so I knew what to expect, and I just knew that like the other two times, I was going to be given a clean bill of boob health.  Except, that didn’t happen.

I was told there were a few “areas of concern” in my right breast, and the radiologist (the doctor who reviews x-rays, mammograms, sonograms, etc) recommended I get a breast ultrasound.   “No big deal,” I thought… I know many people who have had this done, and it ends up being a cyst or something equally innocuous.  So on August 19th, I checked into the diagnostic center I was sent to.  It wasn’t as warm and fuzzy as the Lynn center, and the COVID socially-distanced waiting room chairs with giant X’s taped on the “no” chairs didn’t help. Still, the tech who did my ultrasound was lovely, remarking while looking at my birth date on the chart that she remembered celebrating the bicentennial as a kid and exclaiming, “That’s how old I am!” 

The jovial atmosphere turned tense soon after she started the ultrasound.  I knew something was up because she was SILENT.  She spent quite some time going over the same spot.  When she broke out a ruler and started measuring, I cringed.  What the hell?  Does she see something?  Naturally, I was looking at the screen, and the sea of gray/white/black didn’t tell me anything.  When I looked at the several ultrasounds of fetal Austin when he was in my belly 12 years before, I could never tell what was on the screen although it was clearly obvious to everyone else.  Yeah, so a boob tumor was definitely not going to pop out at me.  Before she finished, she spent some time imaging my right armpit.  I had been told not to wear deodorant, and suddenly my biggest worry was that my nervousness was making me sweat and stink up that little wand.  But I digress…

I sat in the waiting room waiting while a radiologist reviewed those images.  The same tech called me in about 10 minutes later and informed me that I would need a biopsy.  I could feel that warm burning sensation creeping up from my neck that I get when fighting back tears.  I successfully managed not to cry in front of her.  I sat in the car and Googled “breast biopsy” and one of the first things that came up is that “80% of breast biopsies come back benign.”  I thought these little intruders would certainly be fibroadenomas or something like that.  I needed to chill the F*#@ out.

Later that day, I had to contact my OB-GYN to get referred to a breast surgeon for the biopsy.  Her office is all super modern and has an online patient portal where medical reports are uploaded and I can message back and forth with the doctor. I wrote her explaining I needed a biopsy, and she told me not to stress.  I made an appointment with a breast surgeon, and in the meantime the radiologist report for the ultrasound was uploaded to the patient portal.

BIRADS 5

I knew it was cancer when I saw “birads5”.  Well, not immediately.  I had to look it up.  But in a nutshell, the report found three small “lesions” with very technical descriptors and at the end of the report, the radiologist wrote: “Classification: birads 5”

Now, birads stands for “breast imaging reporting and database system”. It gives a score from 0-6 when describing a boob mass/lesion/whatever on a mammogram, ultrasound, or MRI.  You can read more about this lovely classification system here.

birads 5: “highly suspicious of malignancy”
“>95% of being cancerous”

I realized that the 80/20 benign/cancer statistic didn’t tell the whole story. If the radiologist thought your spots were birads5, you’re basically screwed. That’s when I knew.  That’s when I freaked out and began the grieving process of my previously carefree healthy boob life.  

Those boo boos in my boob were apparently quite serious. 

*I thought the boo-boo in the boob title was quite clever until I realized I wasn’t the first genius to come up with it. In my day job one of the most important things I teach my students is to give credit where credit is due. This woman wrote a lovely children’s book titled Mommy Has a Boo Boo in Her Boob. Though my kids are too old for it, I thought it was cute. You can check it out on Amazon here.