No matter what you already know about breast cancer, READ THIS.

October is Breast Cancer Awareness Month. Being in public health and part of many health education campaigns, I've known that for a long time, but I have never been more cognizant of it than I have this October. It takes on a whole new meaning this year and not just because of my own diagnosis. When two of my friends were diagnosed just five months before me, I didn't realize how UNaware I really was about my own risk. How could I know so much about disease risk and health promotion and not know THIS?

Therefore, in honor of this month, I'd like to share my story and what I've learned so that others will be truly informed. No matter what you think you already know about breast cancer risk, you probably don't know about this. Of all the people I've told so far, NO ONE has told me, "Yeah, I already knew that!" I cannot understand how such information isn't more widely discussed, especially in my generation. So please read this post and share with as many people as possible. If there's any good to come out of this horrible year, let it be that everyone I know tells everyone they know so that no one else in their circle is caught unaware.

Back in early January, one of my close friends in Finland informed me that she was just diagnosed with breast cancer. Needless to say, I was shocked. It wasn't so much the diagnosis as it was the circumstances. After all, I've known several people with breast cancer, but none were ever in my circle of friends and certainly not the same age as me. However, I chalked it up to being a really unlucky, one-off kind of event.

Then, the following week, I got an email from another good friend who had just moved back to the US from Finland. Her email explained how she was just diagnosed with breast cancer, and I nearly fell out of my chair. I couldn't comprehend how now TWO of my friends could have breast cancer and was grasping at anything that could explain how this was possible. I rationalized that, in the second friend's case, it must have been genetics because her mother had had breast cancer. But STILL.

In late March, I found a lump on myself. At that point, Elisa was six months old and still breastfeeding quite frequently. I had been out for several hours and was way overdue to nurse her. While I was getting ready to feed her, I saw and felt this hard mass pop up along the surface of my left breast. I assumed that it must be a clogged milk duct from going so many hours without breastfeeding and expected that it would just go away once Elisa's normal nursing schedule resumed.

Even though it was less noticeable the following week, it was still there. However, we were about to leave for a month long trip to California, and I didn't see how I was going to find time to get it checked out before we left. Since it wasn't painful and seemed smaller than when I noticed it, I decided to wait to see if it would go away on its own. I figured that, if it wasn't gone by the time we returned from the US, I'd have someone examine it then.

I was well aware of the lump's presence while we were away and even mentioned it to my mom and one sister, who were both concerned. However, I was still convinced that it was somehow related to breastfeeding. Plus, I figured that there wasn't much I could do about it while on vacation anyway. So I tried not to think about it too much, but the fact that it had not gone away after a month was nagging at me.

We got back to Finland on May 9th, and I went to see a doctor at the health center on May 10th. The doctor took my concern very seriously, or perhaps she actually suspected that it was truly serious, and went to a lot of effort to get me in for an ultrasound the following week (the 17th).

After doing the ultrasound, the radiologist suggested that they do a mammogram. Then a doctor came in and told me they wanted to do a biopsy. She said that, no matter what the lump was, it would need to come out. At that point, I was still sure it was something benign, although I was stressed about the idea of surgery regardless.

The next week (May 24th), I went to another doctor at the local health center to receive the biopsy results. I still thought it was so unlikely that it could be cancer. I remember thinking that it would just be coincidentally impossible, and maybe even statistically improbable, that my two friends and I could all be diagnosed with breast cancer within 5 months of each other. So when the doctor confirmed that the lump was malignant, I was so stunned that I couldn't even react. I cried, but it wasn't really about me. I just could not fathom how the result could even be possible.

I was immediately referred to the breast surgeon the following day. After her exam and a discussion of the findings and the requisite surgery, my first question to her was, "How can this be?" I told her about my friends and how similar we are: all 38 or 39 years old, with (at the time) 2-year-old daughters, who lived in Finland at some point. She carefully explained that the most likely common denominator was that we all had children, particularly our first child, in our mid-30s.

My thought was, "Huh, what? Since when is that a risk?" The majority of women I know waited until their 30s to have kids, and I'd never heard any mention of breast cancer risk. In fact, when I was pregnant, I heard about nearly every other risk imaginable except breast cancer!

Because I turned the magic age of 35 when pregnant with Leila, every nurse and doctor I saw in the US commented on the fact that I was of "advanced maternal age." The number of times I heard that phrase was actually annoying. I recall thinking how ridiculous it sounded since I didn't feel all that old. It made me feel like I was 60 and trying to have a baby.

I was sent for additional fetal screenings and an appointment with a genetic counselor. On top of the risks for chromosomal abnormalities, I was warned about miscarriage, gestational diabetes, high blood pressure, pre-term labor, placenta previa, and low birthweight. Never one word about cancer.

So when the breast surgeon talked about how my tumor was likely brought on by being pregnant in my late 30s, I couldn't understand how I'd never heard this before. As a health educator, I thought I knew who the high-risk populations were. In my experience, they certainly weren't healthy women under 40 with no family history. I'd even heard that women who never have children could have a higher lifetime risk of breast cancer because having children had a protective effect. So, how could my risk possibly be elevated by having kids?

The health educator in me took over. I had to figure out if this information was out there in general circulation or even in the research literature. Lo and behold, it was. However, in most of what I read, it was certainly not highlighted. It was mentioned as more of an aside and buried further down on the list than most of the risks I already knew. The most succinct and clear explanation I've found so far is this:

http://ww5.komen.org/BreastCancer/NotHavingChildrenorHavingFirstAfterAge35.html

I don't know about you, but I found the lack of information and discussion on the topic shocking and infuriating. In this era, when women are waiting longer to finish their education or start a profession before having children, why is this not a priority issue? Maybe the increased risk of breast cancer due to pregnancy after 35 is still relatively small compared to the other things on the laundry list I was given when pregnant. However, I still wish I had heard it then.

Knowing of the risk before now would not likely have changed my decision about when to have children. What it would have done is made me more vigilant, on my own behalf as well as on behalf of my friends.

As much as I try to practice what I preach about health screenings, I confess that I haven't always been so consistent with my breast self exams (BSEs). Since I considered my risk to be so low, especially before the age of 40, I have only done them a couple times a year. I don't think I've even done them that frequently over the last three years since pregnancy and breastfeeding changes breast tissue so much. However, if I had known of this risk, I would certainly have been more systematic about it. If I had actually believed in the possibility of finding something, maybe I would have found the lump earlier. Maybe I could have even avoided having to have a mastectomy. It's impossible to say exactly what might have happened, but I do know I would have been looking.

Even though I didn't find the lump until it was large enough to discover by chance while breastfeeding, I'm "lucky" that it seems to have been soon enough to save my life. My two friends were similarly "lucky" to discover their tumors in time. However, I'm sure there are many women out there who missed theirs because they simply didn't know how hard they should be looking.

If anyone you care about has been pregnant in their mid-to-late 30s (or later), please share this information with them. Please urge them to do their BSEs regularly because there is a chance that they might actually find something. If they do, you would want to be sure they have as much time as possible to get it evaluated and dealt with, if necessary. You wouldn't want their chances to be riding on luck.

P.S.- A number of women have told me they don't know what they are looking for when doing a BSE. I'm not sure I truly did either, but, when I did find something, I knew it was wasn't supposed to be there. Just try to know what is normal for you and keep looking for anything that changes. I thought this was a good illustrative guide: http://www2.breastcancercare.org.uk/sites/default/files/ybyh_quick_guide_web_2011.pdf

If you find something/anything, have a doctor evaluate it so you can act in time if it really IS something.

Thank heavens for Leila!

It's not the Leila you're probably thinking of (my daughter), although I'm awfully glad to have her, too. Today I'm especially thankful for Leila, the super kind and helpful oncology nurse at the Cancer Clinic.

She was the chemotherapy nurse I had for my first treatment. We seemed to develop a rapport once I told her that my daughter's name is Leila, too. You see, there are fairly many Finnish Leilas in the generation of women in their 50s and 60s but not so many little Leilas. So whenever I meet an older Leila and tell her about my daughter, she usually seems pretty tickled that there's a new generation of Leilas coming along!

Anyway, you can probably imagine how crazy nervous I was at that first chemo treatment. However, Nurse Leila was extremely calm and patient in explaining the hundreds of things that were happening and all the details that I needed to remember. She answered all my questions thoroughly and continuously checked on me throughout the process to be sure I was doing okay. She seemed genuinely concerned for my personal well-being and not just in getting me through that treatment so she could move on to the next patient. She even suggested that, while I had a break between the Herceptin and the Docetaxel administrations to check for reactions, my friend Vanessa and I go downstairs to the cafe and try to have some lunch. Leila was all-around a caring, thoughtful nurse, and she even spoke very good English (a big bonus in these situations)!

Although I've seen Leila nearly every time since, she hasn't been personally assigned to me again until this most recent treatment (the fifth). I was actually kind of relieved to have her this time since the fourth treatment was so rough for me. I felt a bit more relaxed having her there since I know she's so competent. Even the friend who kept me company this round noted how good Leila was.

As we got started, Leila asked me how the fourth treatment went and what I discussed with the oncologist last Friday. She listened very carefully and asked me additional questions, especially about my comments regarding feeling unable to stay in one position very long. Apparently, one of the anti-nausea medications causes "restlessness" in some patients. So she suggested that I not take that drug and instead substitute another, which she gave me so I wouldn't have to go to the pharmacy for it. She also said it has a bit of a relaxing, drowsy effect that might help with my ability to rest. Since the oncologist had not even thought of this, I was super grateful that Leila did.

And, voila! I did have some issues with nausea (and vomiting, unfortunately) on Wednesday night, probably because I didn't manage to take the anti-nausea meds before I really felt nauseous. I then took the drugs and went to bed at 8:30 pm and woke up at 6 am on Thursday feeling okay. I was moving a bit slowly but otherwise alert and calm. I even managed to do my presentation at the American Women's Club meeting and join some friends for lunch afterwards!

Today, Friday, which was my worst day last time, has been generally okay. Of course, it helped quite a bit that the girls were in daycare this time. However, I think the real saving grace was that change in medications that Leila suggested. I still have the fatigued, headachy, queasiness like during a hangover, but this time I've been spared the 40-week pregnant and jet-lagged part. It's still no picnic, but I don't feel like I might rather be dead. I managed to watch a little tv, read some of my book and take a nap so that was a vast improvement from not being able to do ANYTHING the last time.

So, again, I'm extremely thankful for Leila today. The fact that she listened carefully enough to my symptoms to catch something important and took steps to correct it has made a huge difference in my ability to cope this time. I'm not nearly as fearful of finishing out this treatment cycle and undergoing the next one. I think I'll have to be sure to find Leila next time and let her know how much she helped me. THANK YOU, LEILA!!

Carpe Diem!

On the eve of my fifth chemotherapy treatment (of six), I'm trying to keep the dread at bay by reflecting on all the good and fun things I have done over the last three weeks. Some of the highlights were: the AWC Gourmet Group lunch, visiting my friend (who lives in Australia) while she was in transit through Helsinki-Vantaa, a trip to Linnanmaki, Stockmann's Crazy Days, two girls' nights out, a pedicure, Pilates, and several knitting groups, playgroups, and coffee and lunch dates.

A number of people have asked me why I try/how I manage to do so many things when I'm sick. The short answer is, "Because I can."

Those of you who read my previous blog entry know how unexpectedly horrific the last treatment was- both physically and mentally. I feel like I got a glimpse of what it might be like to be in solitary confinement because I couldn't go anywhere and couldn't do anything but lie in bed in the dark and stare at the ceiling. I was trapped in my misery and could not even escape my stressful thoughts.

Therefore, the last three weeks between treatments have felt to me like someone said, "Okay, we'll let you out of solitary for a few weeks, but then you have to come back." If it were you, what would you do? Would you spend those three weeks lying on the couch watching awful daytime television? It might be worth doing that for a day or so, but then my guess is that most people would do what I did: LIVE LIFE. Seize each day and make it count. That way, if/when I'm feeling miserable after this treatment, I can look back on all the fun I had and know I made the most of the time I had when I felt well. I can also look forward with the hope of doing more of those things once I get past the worst of it.

The funny thing is, this is actually how I used to live my life before I had a husband and kids. (It's just a whole lot harder to do when you have a family, a routine and commitments to other people...) Those of you who have known me since the pre-Gmail days know that my part of my email address used to be (and part of my Skype handle still is) "carpediemgirl." I really tried to seize every potentially good opportunity that came my way and pushed myself to experience life. In fact, it's that mentality that took me to Mozambique and then brought me to Finland.

While going through cancer treatment, I've generally felt totally unlike myself. However, this one aspect has reminded me of an important part of my real self that I need to reclaim and continue, even when the treatment is over. So I guess I have cancer to thank for reminding me to live life to the fullest while I still can. I'm hoping that, by reading this post, some of you will be convinced to do the same but without having to go through the cancer part!