Frequently Wondered Questions

I've noticed that when I talk to people about my experience, they often say, "I wondered about that," but for some reason, they hesitate to ask. It's really okay to ask. I can't speak for anyone else, but I'd much rather be the source of factual information than have people make (often false) assumptions. Some of this is redundant to other posts, but so be it.

Did someone in your family have cancer?
Yes, my mother had breast cancer in her 30s and passed away when she was 40. I don't know a lot of details about her diagnosis, however.

Did you have genetic testing?
Yes, about two years ago, I had genetic counseling and testing done. I was negative for both the BRCA 1 and 2 mutations.

How did you find your cancer? Did you find the lump yourself or was it a mammogram?
Neither. I did not feel my own cancer, nor was it found on a mammogram. In fact, even after it was detected, there was still no trace of it seen on a 3D mammogram. Because I was considered high-risk, I was getting annual breast MRIs, which is what showed an abnormality.

Why shouldn't everyone get breast MRIs?
When it comes to screening technologies, guidelines are established looking at many factors. Two of which are specificity and sensitivity. MRIs are very sensitive, but not very specific. This means that they tend to pick up a lot of "noise." So, for women who are normal risk, that would translate into a lot of false positives, which would need follow-up testing. This is both costly and anxiety-inducing. Mammograms are not as sensitive, but they are more specific. Also, there are times when mammograms find cancers that are missed by MRIs.

Anyway, if you are at high risk and/or have dense breasts, it may be worth talking to your doctor about more aggressive screening, which could simply mean mammograms plus ultrasound or mammogram plus MRIs.

What stage is your cancer?
My tumor measured 2.0 cm and my sentinel node biopsy was clean. This means I'm stage I. If the tumor had been 2.1 cm or if my nodes had been involved, I'd be at a higher stage.

The type of cancer is infiltrating and in-situ lobular carcinoma. Lobular cancers make up about 10% of all breast cancer. Almost all others are ductal. Lobular cancers are typically slow-growing, but are often very hard to detect on mammogram (see above).

What kind of treatment are you getting?
Surgery:
I had a skin and nipple-sparing bilateral mastectomy (removal of both breasts, leaving as much skin and the nipples/areolas intact), sentinel node biopsy (removal of just 1 or a few lymph nodes for testing), and am in the process of getting reconstruction. I currently have tissue expanders (medieval torture devices) in place. These are gradually filled with saline every couple of weeks. Eventually, the expanders will be exchanged for silicone implants. If anyone tells you it's like a boob job, please do me a favor and just slap the shit of out him/her. More about that another time.

Chemo:
This is TBD, most likely not, but it will depend on the results of the Oncotype DX, which calculates the likelihood of recurrence and how beneficial chemo might be. I'll update this when I learn more.

Radiation:
I will not have radiation.

Hormone therapy:
Because my cancer is estrogen-receptor positive (it feeds off of estrogen), I will get monthly ovarian suppression injections. I may eventually have my ovaries removed. I will also take a daily aromatase inhibitor. The data indicates that hormone therapy is very effective against lobular cancers.

What other questions do you have? Let me know in the comments. Don't worry about prying. If I don't want to answer, I won't.

Disclaimer: This information is based on my individual experience and shouldn't be extrapolated to anyone else. Cancer and its treatments are highly individualized.

In limbo: an update

I've had some folks ask me for an update, so here's what's new. I’m still doing quite well, considering I had major surgery 2.5 weeks ago. Pain is greatly reduced, but I still have a good amount of discomfort, and I still have drains in place. I just went to the plastic surgeon, and he thinks I should be able to get the drains removed in the next week or so. Once that happens, I'll start going back to the office. I had my first "expansion" today to gradually fill the tissue expanders to size before they are exchanged for implants. Ouch. At least my chest doesn't look like it's harboring Tom Brady's deflated footballs anymore.

Aside from the surgery, I’ll be getting hormone therapy, but there’s a slight possibility that chemo will be considered. I’m waiting for one more test result before figuring out what my treatment plan will be. This is the Oncotype DX, and it looks at the genes within the tumor to see how active they are and calculates the likelihood for future recurrence and how beneficial chemotherapy could be. I know my last update said no chemo or radiation, and truth be told, my oncologists is confident that chemotherapy is not the best option for me. Lobular cancers are typically slow-growing, and since chemo targets fast-changing cells, the data indicates that hormone therapy is the most effective tool. However, as I’ve mentioned, ask for more opinions and you will get them! A medical oncologist I know through work strongly suggested I have the test done because my pathology report showed that the cancer had some local spreading, even if it hadn’t made it to the nodes and even if there were clean margins. She explained that people with this lymphovascular invasion have a higher risk for recurrence, so the Oncotype might provide further insight. My oncologist reluctantly agreed, recognizing that I need to feel comfortable as we move forward. Either way, I’m looking at 1-2 more surgeries (to finish reconstruction and possible oopherectomy [removal of ovaries]). Those will probably be later in 2015.

In the meantime, I'm putting on some pounds from all the amazing food our friends are giving us. Our fridge runneth over! We also skipped town and spent a beautiful weekend with our dear friends at their family's beach house. The beach definitely soothes my soul, and I love watching my kids jump the waves and have a ball. We went crabbing, and Hope caught the biggest crab (which isn't saying much; most were much too small and only two were barely legal). She named it Pinchy and ate it with great joy. I guess my advice to not name your food wasn't necessary after all.

The details about my diagnosis

When I was 13 years old, my mother died of metastatic breast cancer. She was 40 and had been initially diagnosed at 33. Not that I knew that at the time. That was the late 1970s/early 1980s and in those days, people hardly even used the word "cancer" except in an occasional whisper. They certainly didn't use the word "breast" and even more certainly didn't tell children about it. So, it wasn't until a few months before she died that my mom and dad leveled with me. I had sort of figured it out, knowing she had a large scar on her breast and had frequent doctor's appointments. I learned later that she initially didn't have chemo, and when she did later on, she didn't lose her hair, so it wasn't hard to keep the secret. I figured it was something she had had in the past, and it was behind us. Looking back, I'm sure she hoped the same.

Anyway, when I was 19, it occured to me that my risk might be higher and I should do a breast self exam. This was in the early 90s when shower cards were beginning to proliferate, even on my college campus. Lo and behold, I found a lump. I had surgery a few months later and learned all about fibroadenomas. They are very common in younger women and completely benign. But thus started my surveillance as a "high risk" person.

Over the years, I had several more fibroadenomas, one of which also turned up atypical lobular hyperplasia. My breast surgeon recommended mammograms at 27 (5 years before my mother's diagnosis). After I had my children, I decided it was time for genetic testing. Turned out, I was BRCA negative! Phew! If I had been positive, I had already decided that I would have a prophylactic mastectomy and (if BRCA1+) oopherectomy. Even though I was negative, I still had a family history and atypical hyperplasia, so still considered high risk. The oncologist suggested I take tamoxifen and get high risk screenings, which meant alternating mammograms with breast MRIs, every 6 months, in addition to clinical breast exams.

For the first time, the cloud lifted. I was BRCA negative, but still being proactive in taking a proven breast cancer prevention medication. Maybe breast cancer wouldn't be my fate after all. The anxiety around the screening abated and I saw them as routine medical appointments, just like my semi-annual dental visit.

Just 18 months later, a day after a "routine" MRI, I got a call that there was a new finding that needed to be seen on ultrasound and biopsied. When I went for the appointment at the end of the week, the radiologist first had me get a 3D mammogram. No sign of the mass. He found it fairly easily on ultrasound, however, and he said he strongly suspected it was a small cancer. (You know your doctor is concerned when he hugs you on your way out, but I'll write about my medical team in another post.)

The following Monday he called me and confirmed it. Infiltrating and in-situ lobular carcinoma. ER/PR 100%, HER2 negative. All the docs seemed happy with that.

I learned since that lobular cancers make up only 10% of all breast cancers (the other 90% are ductal). They are typically slow growing, but very hard to see on mammograms, so most people with lobular cancers have much larger or more advanced cancers by the time they are discovered.

Since that day, it's been a flurry of phone calls, appointments, emails, etc. I had a bilateral mastectomy and now have tissue expanders in place in a multi-step reconstruction process. All of that  will be covered in future posts. This one is long enough and extraneous enough.