April 2021 – May I Never Forget

Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.

After you are diagnosed with breast cancer, there is this flurry of activity that needs to happen. This is why they give you a nurse navigator – because the entire process is insane. Or maybe it just feels insane because your life was turned upside down? Either way – it is crazy. The strange thing is that while it is happening, you are getting asked about 5 million questions from other people who love you and just want the best for you. Overwhelming does not even begin to describe it – and, strangely, looking back to that time, which is now about 4 months ago, I didn’t have any concept of how much more overwhelming it was going to get. I am not sure if I even do now since I am still in the chemotherapy phase as I write this.

As an epidemiologist, I conduct medical research for a living and I love my job. However, when that is your job, it is almost a mental conflict of interest. It is like trying to serve as your own doctor. I made it my life’s mission to become an oncologist in less than a week. I lived on PubMed reading everything I could get my hands on. I scoured the NCCN guidelines. Then, a really good friend who also happens to be my past PhD advisor told me to cut it out and stop reading. He was right – all it did was give me anxiety. Sometimes, you just need to give it to God. I am not saying to be uninformed or not to be your own advocate, but at a certain point, you are starting to do harm.

Anyway…onto cancer staging. The next step was an MRI of both breasts. The scary thing about that MRI was that it had the ability to tell me if the cancer spread to lymph nodes and also whether it was present in the other breast. To be clear, cancer can spread on a microscopic level without it being seen on MRI. This is why some people have imaging that is “clear”, but then later find cancer in other places in their body. However, it is the first best guess they have as to extent of spread (they will check lymph nodes during surgery).

My MRI showed the following:

Left breast: 1.4 cm anterior-posterior by 1.2 cm transverse by 1.2 cm craniocaudal irregular, enhancing mass in the deep outer, lower left breast. No additional suspicious enhancements.

So all they saw on the left side was what they already knew I had (whew!). However, what they also found were 3 nodules in the right breast (ugh!). These were very small and they thought they were benign based on the imaging, but they also thought my original mass was benign, so I had to have an MRI guided biopsy to further evaluate them. Thankfully, those did turn out to be benign.

When all was said and done, here is where I landed:

Stage 1c

T1c (~1.2 cm mass)
N0 (no lymph nodes on MRI)
Mx (low risk of metastases)

Treatment

Neoadjuvant chemotherapy: Adriamycin (aka doxorubicin) and cytoxan (aka cyclophosphamide) once every 2 weeks for 4 cycles followed by taxol (aka paclitaxel) once every 2 weeks for 4 cycles
Surgery: Lumpectomy with radiation OR single/double mastectomy (to be determined later)

Next Steps

Have port placed (I admit this made me really nervous, but I am glad I did it – it is ugly looking, but made chemo, blood draws, etc. so much easier)
Have echocardiogram to get clearance for adriamycin (adriamycin can damage the heart)
Think about fertility and egg freezing (after 4 miscarriages I decided it was time to just let this go)
Think about cold cap (this is a system that freezes your scalp to help minimize hair loss. Given that brain metastases is one of the common sites for breast cancer spread, I decided against this even though I knew the risk was small. Also, I knew someone who did it and her hair fell out anyway).
Argue with insurance company who tried to deny my chemotherapy (I am not kidding – this actually happened. My doctor had to get on the phone and show them the NCCN guidelines so they would approve it)
Talk to other breast surgeons and oncologists (Luckily, the good friend who I had referred to earlier in this post had published a lot in breast cancer and was able to connect me to some oncologists in different networks for informal second opinions. I was able to get 3 additional opinions really quickly, and they all agreed with the initial treatment plan. They pointed out some small deviations they might make, but generally, everyone was on the same page. That made me feel a lot more comfortable, especially considering that I was right on the cusp for getting neoadjuvant (before surgery) vs. adjuvant (after surgery) chemotherapy. Besides the fact that I was (am) a triple-negative patient and the cancer is aggressive, there were 3 main reasons that they decided on neoadjuvant chemotherapy: 1) It may take 2-4 weeks to get on surgery schedule and without chemo during that time, the tumor will continue to grow quickly; 2) after surgery, you cannot start chemotherapy for 4-6 weeks because you need to heal, so during that time if it had spread anywhere else, it will grow in it’s new location, and 3) because triple-negatives mostly rely on chemo given the lack of hormonal targets, receiving chemo first helps doctors understand what chemo agents are effective against a person’s tumor. For example, they want a 100% pathologic complete response, abbreviated as pCR, at the time of surgery or I will get more chemo. This is because if the chemo did not make the original breast tumor disappear, it is likely that any cells that spread outside of the breast are still present and those are the ones that are dangerous. If they did surgery first, there would be no way to tell if the chemo worked since the tumor has already been removed.

So after all of this was agreed on…it was time to start chemo!

May the Lord bless and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. Numbers 6:24-26 NLT

Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.

When I was working on my master’s thesis, I selected predictors of triple-negative breast cancer as my topic. Why? It is a very aggressive diagnosis that often impacts younger women who don’t see it coming. At that time, I never could have anticipated that I would be one of those women. All the reading, studying, and sympathy I felt…and now here I am with no hair, hardly any eyebrows, on a day when my heart rate is normal enough to feel functional, typing out this story of my diagnosis.

I would love to say that given both my master’s thesis and PhD dissertation were focused on breast cancer that I checked my breasts at least on a regular basis. I didn’t. Now, don’t get me wrong – I checked them, but more on a random basis. In October 2020, I had just been checked by my OBGYN, so that is why I am surprised that in late December 2020, I felt the urge to check. Unfortunately, something didn’t feel right. There was a small lump in my left breast…sized somewhere between a pea and a chickpea. I even called my husband into the bathroom and made him feel it to make sure I wasn’t crazy. I called my primary physician who was out of the office on vacation. Then, I called my OBGYN, which ended up being a great stroke of luck. He did not feel anything on my last exam, but he said that if I felt it, he trusted me and I did not need to go in. I should go right to an imaging center to get a mammogram. I was lucky enough that there was a cancellation at a local breast imaging center, so I was able to get the mammo in 2 days. Perfect!

I went in and since it was diagnostic, they make you put this marker on your breast over where the lump is, which is actually not as easy as you would think. Anyway, when I the mammo tech was done, she said I would also need an ultrasound. I wasn’t really concerned since I knew I had dense breasts, so I already assumed they would need an ultrasound. Then, I could hear the mammo tech and ultrasound tech whispering. I heard the mammo tech say “There is really something there”. Again, I stayed calm because I knew there was something there. I mean, I felt it.

So, I had the ultrasound done and the tech clearly sees the lump because she is using the ball to measure something. I have had 4 miscarriages, so I have had a lot of fetuses and gestational sacs measured. I am starting to learn what they are doing. Also, when I left, I saw a black circle on the screen, which was clearly “the lump”.

My OBGYN called me and let me know that the report said the lump is in fact a cyst and is probably benign, so the radiologist recommended that I go back for imaging again in 6 months to see if anything changes. My OBGYN (aka my hero), then says “I know they say it’s no big deal, but it is something in your body that shouldn’t be there, so why leave it. I think you should go to a breast surgeon and have the cyst drained.” That made sense to me, so I looked up a local breast surgeon and went in to have it drained.

Fast forward to the breast surgeon visit, which was about 2 weeks later. She looked on ultrasound and agreed it looked like a cyst. It was almost a perfect circle, no gray areas or shading, no “spikiness”, etc. She said guidelines say it does not need to be drained, but if I want it drained she will do right then in the office. So, I said yes, let’s do this.

Within seconds, I knew something was off, even with her mask on. The needle was in, but her eyebrows were creased and she said “Maybe I just need a bigger needle”. So, she returned with a bigger needle. She tried again and her eyebrows creased again. I knew – it wasn’t draining. If it wasn’t draining, it was a mass. However, there is a benign mass called a fibroadenoma, which I figured it must be. She told me not to be nervous, but confirmed what I was thinking in my head – it did appear to be a mass and she asked if I would like it biopsied. I almost wanted to laugh – does anyone ever say no to that question? YES, please biopsy this thing. So, she biopsied it and assured me again that nothing on imaging suggested cancer. In fact, the chance it was cancer was only 2%.

I returned a week later for the results and the first thing I found odd was that they asked to take my picture for their file. Wait…what? I walked in there literally still thinking this was not cancer. Why would they need my picture for a file if I was never coming back after this visit? However, I chose to ignore the thought because I was probably just overreacting, right? Then, I went into the exam room and changed into a gown so the doc could inspect the biopsy site. I heard a knock on the door and when the doctor walked into the room, she looked at me and then looked down at the floor immediately. Now…anyone who has read the story of my son being diagnosed with infantile spasms knows that this is exactly what the doctor did when she walked in with that news. That was the moment I knew I had cancer. All she said was hi, but I knew. She asked some questions about biopsy site pain, looked at the site, said it looked fine and then….she came out with it. She sat right in front of me, looked me in the eyes and said “It is going to be okay, but there were cancer cells there”.

All I could think was that I am 39 with a 9 year old son at home. I couldn’t leave him yet. My husband’s mother died at the age of 49, his dad died at the age of 57 and his brother at the age of 39 – all due to separate medical conditions. I could not leave my husband too – he already lost his entire immediate family!! I could not be another person to leave him. All I could think was God, please do not make me leave either one of them, not yet. I could barely speak, but I told her that this felt ironic. All of my master’s/PhD research was focused on breast cancer and specifically triple-negatives, and there I was with breast cancer. Then, she looked at me and let me know it was triple-negative. She said she almost wished I didn’t know anything about it – likely because let’s face it, if you had to pick, triple negative is not the kind of breast cancer you would want if you had a choice. Super aggressive, fast dividing, higher recurrence rate, more likely to die, less treatment options….how did this happen?

With all of that said though, I am so glad my OBGYN had me go to get it drained or I would have had a triple-negative breast mass growing inside of me for 6 months. To quote another breast surgeon I spoke with, that would have been “life-changing”. I also thank God my primary care doctor was out of the office. She is wonderful, but much more by the book and probably would have followed the radiologist’s recommendation to wait 6 months. I consistently thank God for this strange set of circumstances – the fact that I checked my breast in and of itself was a miracle, not to mention my primary care physician being out of the office and my OBGYN giving the advice he did.

So….I left the office knowing chemo and surgery were in my future. But more immediately, I had to go home and tell my husband, which ended up being one of the hardest things I have ever had to do in my life.

Pathology information:

Invasive ductal carcinoma with brisk lymphocytic host response, Grade 3

Estrogen receptor: Negative, <1%, weak intensity

Progesterone receptor: Negative, 0%, no intensity

Her2: Negative

Ki-67: 60-70%, high proliferation rate

P53: >95%

Trust in the Lord with all your heart; do not depend on your own understanding. Proverbs 3:5 NLT

Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.

Month: April 2021

Part 2: So…how bad is it? Cancer staging and treatment plan.

Part 1: It’s a cyst…ooops, it’s triple-negative breast cancer