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.

The value of a positive attitude

Frankly, I've been somewhat surprised at how many people are congratulating me on my "positive attitude." There's no doubt that I'm a very pragmatic, direct person. I often have to remind myself that people need to hear niceties to feel good about themselves. It's not that I have nothing nice to say, it's just that I think a good job speaks for itself, so telling someone "nice job," giving them some external validation, was something I had to be taught.

So, I'm certainly not telling people that I have cancer and going through the motions in any kind of cheery way. I don't think I'm relying on platitudes. I don't believe this is God's great plan or that it's happening for some kind of greater reason. I think there's probably some genetic error that is making my cells grow abnormally. Period. It's annoying. It's concerning. But I'm also not melting down over it. As they say up north, it is what it is. 

So far, things look promising, as far as cancers go. It's small, looks localized. Should have been easy to remove surgically. We'll see what other treatment makes the most sense in terms of need and anticipated benefit. Whatever I do, I know that 30 percent of women with early stage breast cancer will ultimately have a metastatic recurrence. It could happen, but it might not. Anyway, it's probably not going to happen in the immediate future. So, why not treat what we can, try to prevent as best we can, and continue to live life as fully as I can? Why waste energy on false hope or unreasonable despair?

I think a positive attitude makes one a more pleasant person to be around. It may even make one happier. But it doesn't change clinical outcomes. I need to rely on the best scientific information to make my decisions, realizing that well-powered data must then fit me as an N of 1. What happens from there will depend on the science we know as well as what we don't know. As we learn more, we'll see if it can be applied to my case.

In the meantime, I do have a range of emotions. Sometimes I'm really angry. Sometimes I'm grateful for the wake-up call. Sometimes I'm sad when I look at my children and wonder what the future holds for us. Overall, I'm focused on doing what I need to do to get ahead of the cancer and to live each moment the best I can.