Discussing Breast Cancer

Fact: Men can get breast cancer.

Fact: Less than 1% of all breast cancers occur in men.

Fact: Women and men with advanced stage breast cancer face the same survival rates.

Fact: Men diagnosed with early stage disease are more likely to die than women with early stage disease (according to the results of a recently publicized study).

Dr. Zeina A. Nahleh, assistant professor Hematology-Oncology at the University of Cincinnati, reported that, “among men whose breast cancer had not spread to the lymph nodes, the typical survival time was 6 years, compared with nearly 15 years among women.”

Seems more research needs to go into this, but since the rate of occurence is low, there hasn’t been much activity in this area.

Meanwhile, I don’t know any male survivors but I’d love to hear from them (if they’re reading) or about them (if you know them).

Spread the word. I want to discuss male breast cancer, too.

Since cancer had come back in my right breast after surgery and radiation and hormone therapy … it was clear that my right breast needed to come off. Apparently it wasn’t just prone to developing cancer cells, it enjoyed growing them, and was good at it. That made at least a single mastectomy a must in everyone’s eyes. I couldn’t help but chant in my head … “we must, we must, we must remove my breast.”

Even though my left breast wasn’t involved with my breast cancer recurrence, I had the option of removing it. It was considered a perfectly reasonable option. An option. That meant I had a choice to make.

My husband had no doubt in his mind that a double mastectomy was the way to go. He didn’t want to ever, ever go through the stress of a diagnosis again. “Why wait to find out that the cancer was back a third time in your left breast,” he voiced to me when I found myself in a quandary.

I, on the other hand, could have been talked out of a double mastectomy. I was still in a bit of denial. I really didn’t like the idea of unnecessary surgery and I wasn’t sure it was necessary to get rid of both breasts. Sometimes I wasn’t sure the pathology was right. I often found myself imagining the results had been switched ’soap opera style’ and I never even had breast cancer in the first place let alone a second bout of it.

But I was at high risk for developing breast cancer in my left breast since my right breast and I had a personal history with the disease. I read the results of a great study posted on breastcancer.org about just this decision. In a moment of clarity and reflection on how hard my diagnoses were on my family, I realized it was the right choice for me to try to make sure we were never, ever in this situation again.

And that meant … a double mastectomy.

On May 4th, Belkin announced their new pink cases for the iPod nano designed and sold for the cause. A sport armband and a ‘hope’ remix metal. AWESOME!!

When you click on that link you’ll see the details and their explanation on the benefits of exercise so key to staying healthy, especially for breast cancer survivors. The facts are continually shown in studies: exercise lowers your risk of getting breast cancer (See 2/16/07 CBS News story and 3/1/07 Science Daily article).

10% of the proceeds go to Susan G. Koman with a minimum donation of $100,000 — now that’s what I’m talking about. Thanks Belkin!

Love this iPod case … many thanks to the girls at Shiny Shiny and my husband for pointing out this pink product!

On Monday, April 3rd, 2006, I headed to Yale for another Stereotactic Core Needle Biopsy of my right breast tissue. The same breast that was surgically treated then radiated not three years prior. (Persistent little buggers, aren’t they, those cancer cells?)

In an earlier post, I explained my first biopsy so I’ve no need to bore you with the details in this one. The only difference between my first biopsy and this one was (1) the location (Norwalk Hospital vs. Yale) and (2) the fact that I’d already had bad news once so I no longer lived in denial, I no longer felt it couldn’t happen to me, and as a result I was an emotional wreck.

Fortunately, a nurse practitioner from my surgeon’s office joined the crew of technicians and stood next to me speaking to me with a soothing voice and rubbing my back the entire time. Seriously, that’s what she did, and it made a difference. I felt cared for, and safe, and though I was scared, I knew I’d be alright even if it proved to be cancer again. And it did. I had a breast cancer recurrence.

A few days later I got the call from Elspeth Knill-Selby, A.P.N., Affiliated, Surgery. Invasive Ductal Carcinoma and DCIS cells were found in the tissue sample. Most likely it was still caught early (Stage 1), but we’d need full pathology done to confirm that diagnosis. Pathology that would be completed after a mastectomy and a sentinel node biopsy.

All that information was given to me over the phone. Now some people don’t like getting information like that over the phone. But in my case, honestly, I’m so busy with my kids and I have a strong relationship with Elspeth. So I didn’t mind that aspect of the diagnosis at all.

What I did mind was that I was facing some hard decisions: a single mastectomy of the involved breast, a double mastectomy, reconstruction and if yes, what kind.

I just read this article in the Washington Post about an Avon Walk for Breast Cancer and smiled.

Walks are analogous to breast cancer fights, aren’t they? I spoke about this once at a speech I gave for the American Cancer Society. They’re long and often arduous, the weather sometimes sucks, it gets dark before the dawn … yet somehow, God willing, you make it to the finish line.

Anyway, love this story and just wanted to share.

I’ve been putting off sharing the details of my recurrence because recurrence itself is so hard to face, even after the fact. I also don’t want to worry anyone unnecessarily … not everyone has a recurrence after an initial bout of breast cancer. Many, many people are lucky that way. I was not. This week I’ll tell you about my recurrence.

After my treatment for DCIS in 2003, as I said before, I went on Tamoxifen and intended to stay cancer free. After all, my breast cancer was Stage 0, my surgical margins were good, my radiation treatments were clinically ‘by the book.’

Good doctors monitor you closely and I did my part by making and keeping my scheduled appointments.

A few months after my treatment (March 2004) I had a clean mammogram. That was a huge sigh of relief — everything looked sunny, not a calcification to be seen. I didn’t have to have another mammo for a year. The weight on my shoulders was lifted. That year was fantastic. My energy returned and physically I felt great.

Mentally, however? I was afraid of recurrence. They didn’t have good data for young survivors — i didn’t want five or ten year recurrence rates, I wanted twenty or thirty year rates and they don’t exist for women under forty. One of my doctors told me that since I was diagnosed, odds were I’d get cancer again in my lifetime. “The good news,” he’d tell me, “is that we’ll be on top of it when it happens.”

That’s such a frustrating concept. After you’ve been diagnosed with and treated for breast cancer, you’re always waiting for the other shoe to fall and hit you in the head. You always expect it, you just don’t know when it’ll happen, so you’re never quite … at ease.

My March 2005 mammogram was different from the previous year, but not suspicious enough to warrant a biopsy. Six months later (September 2006) I had another mammo, no different from the March mammogram so still not suspicious enough.

Both times I felt I’d been given a recess but not a permanent vacation from the worry.

Then came the March 2006 mammogram … and the other shoe finally fell from the sky.

The American Cancer Society has started a new study (called CPS-3) to determine “lifestyle, behavioral, environmental and genetic factors that cause or prevent cancer and to ultimately eliminate cancer as a major health problem for this and future generations.”

They are hoping to enroll 500,000 individuals in this effort and track them for the next 20 years.

Their current study population is aging … they must recruit another generation of individuals to support this body of research.

According to the ACS website, these massive studies have helped to determine (and I quote these directly from this website):

* The link between cigarette smoking and lung cancer
* The significant impact of being overweight or obese on risk of cancer occurrence and death
* The impact of hormones, physical activity, diet, various medications and vitamins, and various other factors in relation to cancer risk
* The impact of air pollution on cardiopulmonary conditions motivating the Environmental Protection Agency to propose more stringent limits on particulate air pollution
* the link between aspirin use and reduced risk of colon cancer
* the link between postmenopausal hormone replacement therapy and various gynecologic cancers (such as breast and ovarian cancer)
* the link between diabetes and cancers of the pancreas and colon
* the link between physical activity and lower risk of various cancers (including breast, colon, and aggressive prostate cancer)

Where would we be today without this information??? How many cancers have been prevented because of ACS study information? How many lives have been saved?

Study participation is critical. What a great way to contribute and support people touched by cancer.

When I had my last surgery I participated in a Yale study related to post surgical deep vein thrombosis — it felt great to be able to assist researchers in a way that I could.

Registration of individuals who are between the ages of 30 - 65 who have never been diagnosed with cancer and are willing to commit to the study long term can sign up at an upcoming Relay for Life event.

Visit www.cancer.org/cps3 or call 888-604-5888 to obtain more information.

I said it the other day: I had a recurrence while taking Tamoxifen. But, I was pre-menopausal, an important factor if you are making a decision on whether or not you should take the drug yourself.

It is important to realize that research continually shows the benefits of Tamoxifen. Here’s a link to the Washington Post coverage of a new study published in the Journal of the National Cancer Institute. The study followed women at high risk for the disease who had first undergone a hysterectomy and ovary removal then began taking Tamoxifen. Astounding results — the rate of breast cancer cases were significantly lower for the women taking the drug.

This proves a few points to me. If you are at high risk for the disease, and are ER+, then Tamoxifen might be for you, even if it means you have to endure side effects like hot flashes and night sweats.

Consider the choice … life with side effects vs. possible death by disease. A “no brainer” if you ask me. but then again, I’m a two time survivor.

It also proves to me that drug companies need to start focusing on finding something with the same efficacy for pre-menopausal women with this blasted disease. More and more young women are battling breast cancer than ever before (thanks to early diagnosis, in part, I’m sure).

That’s my plea this morning. Help us. Please.

This month I’ve chosen to read “Why I Wore Lipstick to My Mastectomy,” by Geralyn Lucas.

Geralyn, now living in New York City with her husband and two precious children, discovered she had breast cancer at age 27, just when her marriage was blossoming and her career was rocketing. She reached the world with her story of what it means to be a young breast cancer survivor.

I haven’t read this now famous book (though I’ve wanted to) but I have seen the movie (It’s a Lifetime Original); I’m anxious to dig in and compare the two. The Lifetime Website has a synopsis, some trailers, an interview with Geralyn, an excerpt from the book and some breast cancer resources as well.

You can also visit the “Why I Wore Lipstick to My Mastectomy” website and download the movie via iTunes. This last link brings you to a fantastic page of breast cancer resources and inspirational survivor letters. Give yourself time to peruse those pages.

Here’s an Amazon.com link if you’d like to purchase the book. Or head over to your local library or bookstore and pick one up to start reading today.

I’ll be posting my review on Wednesday, May 30th.

Last Friday I had the honor of speaking at Fairfield University’s first ever Relay for Life event as an alumni survivor speaker. (Here was their newspaper’s coverage prior to the event.)

The event was part of the American Cancer Society Program Colleges Against Cancer.

The evening was fantastic for more reasons than I can count, but let me give you the highlights here:

Sometimes the blessings of breast cancer show up brilliantly in front of your eyes.