Discussing Breast Cancer

Let’s go back to 2003 … after my partial mastectomy and radiation therapy I was considered cancer free. The question on the table was would I be able to stay that way?

I was 36 years old. The pathology from my surgery determined my cancer cells were estrogen receptive (ER+). I hadn’t started menopause which meant I had a good amount of estrogen running throughout my body. I had a choice to make: do nothing or start hormone therapy, another adjuvant therapy, and that meant taking Tamoxifen.

Now Tamoxifen was supposed to be a pretty great drug (the FDA touted its benefits when it approved it back in 1998). I was told it would prevent whatever cancer cells I might have had left in my breast from feeding on the estrogen my body produced. I was told it would reduce my risk of recurrence by around 50%.

I was told that my risk of recurrence within five years was maybe around 10%. Taking Tamoxifen would take that number down to around 5%. I liked the lower number, that’s for sure.

Of course, there were some side effects to consider — mostly menopausal symptoms like hot flashes and vaginal dryness — also some risks: blood clots and endometrial cancer.

My oncologist felt the benefits far outweighed the risks. When asked point blank if she would take it if she were me she said, ‘yes.’

There was one potentially big problem, however, from where she stood. If my husband and I wanted a third biological child she could not ethically prescribe the drug for me because it could cause fetal harm were I to conceive while taking it. If we were done having kids, however, she’d write the script that day.

My husband and I looked at each other and smiled. No, we weren’t done having children. Yes, we wanted a third child. But we agreed immediately that she should write the prescription. See, we knew that God’s plan for our lives was to bless us with a third child, a little girl, whose biological parents in China could not raise her. We knew we’d adopt child number three so taking Tamoxifen was not going to be an issue in that regard.

I started taking Tamoxifen the week after my radiation therapy had ended. I experienced no side effects at all while taking the drug. But there was one big problem. Tamoxifen was supposed to keep me cancer free. Remember the numbers? It was supposed to reduce my risk of recurrence by about 50%. It was supposed to bring my personal risk of recurrence within five years from 10% down to 5%.

The cancer cells in my body didn’t listen to the numbers that day in my oncologist’s office. They had their own plan and it didn’t involve me staying cancer free for long.

Yesterday was no exception. I see my medical oncologist every three months now and each visit is pretty much the same:

First a wait in the lobby. A peruse of the magazines. A few new booklets published by the National Cancer Institute: Facing Forward Series: Life After Cancer Treatment and When Cancer Returns.

Then a nurse calls me in. She takes my pulse, measures my blood pressure, records my weight (in kilograms but I always ask them to show me the number in pounds, too, sucker that I am), give me my gown, you know the ones, open in the front, blah, blah, blah.

Then the nurse practitioner comes in, asks me a myriad of questions about a myriad of possible symptoms. She gives me a quick physical, including a clinical breast exam, then says the doctor will be with me shortly. I take out my cell phone and start playing bejeweled to pass the time.

Eons later my medical oncologist comes in, we talk about the same things I just reviewed with her nurse practitioner, except I always seem to give my doctor more information, like I’m holding out on the poor nurse practitioner.

Then I head to the clinic to get blood drawn before I go.

They filled two vials, a light green one and a lavender. It would have been fine if the student nurse (I assume she was a student) didn’t miss my vein the first time needing someone else to step in and try again.

It’s amazing to me that at one time in my life I was nervous before giving blood at The Red Cross. HA!

Then I headed home. That’s it. Short. Predictable. But I’m wiped out.

Someday I should tell you about the neighborhood I used to live in, on the other side of the fence, that I can never return to, ever. The one where breast cancer doesn’t exist.

If you want to learn what it would be like to face breast cancer as a single woman in your early thirties than read Cathy Bueti’s memoir, “Breastless in the City.”

In the book (as it was in her life), Cathy’s breast cancer diagnosis and treatment was intertwined with her search for love. Most of us at least faced breast cancer with our spouse by our sides — not Cathy.

See, Cathy’s husband was killed in a car accident when she was 25 years old. Nobody should be widowed that young!

Then she got breast cancer … can you imagine?

Right away the introduction to the book intrigued me … “The probability of becoming a widow at the age of 25 is infinitesimally small; the probability of developing breast cancer around the age of 30 is far less than one in 10,000. If we really think about this, what is the likelihood that these two events would happen to one woman?”

As I reached the end of her story, not only did I want her to thrive as a survivor, I wanted her to find love — I think she deserved to.

But let me take a step back.

Cathy’s breast cancer story is not unlike many others: she found a lump when she was in her early thirties, she went to her doctor, got a mammogram, needed a biopsy, found out it was Invasive Ductal Carcinoma (IDC), she’d need a lumpectomy, perhaps radiation, perhaps chemo … she got a second opinion (something I always, always recommend), and though the two doctors concurred, she still opted for a mastectomy with reconstruction (a wise, wise personal choice because there was indeed lymph node involvement!) … she chose the TRAM flap and MAN don’t I know what she was talking about in terms of her recovery … then needed six months of chemotherapy.

Cathy’s description of the post operative ‘trauma’ and the side effects of treatment were so similar to my own: “The first thing I remember after surgery is feeling as if I’d been run over by a truck! I guess I am still alive, I thought. From my breasts down to my thighs, everything felt like a combination of a burning pain and numbness.”

Yup. I definitely felt that way after my double mastectomy/TRAM flap. Almost exactly that same way. Except that I’d most likely use the phrase ‘hit by a train’ in my memoir (still unwritten, of course, but maybe some day).

Here’s another experience you might recognize as your own: “As I knelt on the floor hugging the bowl, it felt as if all my insides were going to come out. I was shaking, sweating, and wondering how the hell I would get through this. I screamed and pounded my hand on the side of the bowl. Then I started crying. I felt completely alone.”

It was painful to read about someone else’s pain but even more jubilant to read about someone else’s survival — and of course by the end of the book she gets there.

I have to say that the other thread of the book, Cathy’s trials and errors in the dating world, weren’t as easy for me to relate to. Not that I didn’t date but I never utilized online dating services — Cathy’s method of choice.

After dating EIGHT different guys (yes, I counted) I started to wonder if she would ever find another soul mate. Poor Cathy, I kept thinking each time she’d start dating another loser … this sucks. These guys were total schmucks.

I’m so glad this was our April book club selection. I enjoyed reading about Cathy. I love survivor stories in general and this one brought an entirely new issue to light … dating through breast cancer treatment.

I’ll bet you’re wondering if Cathy ever did find someone to share her life with. Well, you’ll just have to read the book yourself to find out, I’m not giving away the ending.

Now it’s your turn … if you read the book, tell us what you thought in the comments below (just don’t give away the ending!).

Remember last week’s post on my daily radiation schedule? After that first day I was so relieved; radiation seemed so painless, so easy …

Then reality kicked in. Day after day I’d hop into my car and head up to New Haven — 1/2 hour there, 5 minutes for treatment, 1/2 hour home — day after day after day after day after day.

It just got so tiring. Even though the staff at the clinic worked to get me in and out of the radiation clinic quickly every single day I was there, there were occasional glitches: weekly appointments with the radiation oncologist, periodic appointments with a social worker, traffic congestion on the highway.

And eventually, side effects started to set in. At first, they were subtle. I just felt sleepier than usual. I found myself tired and emotional on Friday nights — just wanting to stay in bed and sleep, sleep, sleep. By the end of the weekend I’d feel rejuiced, but by midweek I’d start to slow down again … each Friday night was a little worse than the one before.

A friend of mine didn’t experience fatigue when she faced her radiation treatments. But then again, she didn’t have two kids at home wanting as much attention as they could possibly pull from their momma.

And though I slathered tons of cream on my chest after each treatment, eventually the burn just felt horrible. Just imagine getting a really bad sunburn, then going out in the sun the next day with that sunburn exposed yet again — ouch.

So while I thought I’d sail through … it wasn’t as smooth a trip as I had hoped.

Fortunately, Yale had a great complimentary therapy program. Therapeutic massages and Reiki treatments helped make radiation manageable.

Also, a close friend of mine put together a great Bon Jovi CD for me that helped make the driving manageable.

And fortunately, through all the daily doses, my kids were well cared for. My mother came up almost every day to stay with my boys while I went to Yale; a friend stepped in when she couldn’t. On Fridays, my best friend drove up to pick up my boys and bring them to her house for a sleepover.

So do share … what made your treatment manageable?

Back in the days when I was posting regularly to The Breast Blog I started an online book club.

At the beginning of a given month I’d post the name of a book we’d be reading on our own but as a group. At the end of the month, I’d review the book online. A discussion would follow in the comments (at least that was the plan). If someone wanted to offer their own review, they could email me and I’d post their review, too!

Before I moved to this site, a book was chosen for April. It is time to discuss that book and I decided the discussion will take place here.

So … visitors of The Breast Blog had the pleasure of reading a memoir by Cathy Bueti called, “Breastless in the City.” One reader even won herself a gratis copy thanks to Cathy herself.

I’ll be reviewing “Breastless in the City” here at Discussing Breast Cancer on Wednesday, April 25th. You still have time to rush over to the library or bookstore and pick up a copy if you want to read it first.

May’s book club selection will be announced shortly thereafter!

Any questions or comments?

Yes, please do. Not just here, mind you, but over at Newsday (just remember to come back, ya hear?).

Columnist Lauren Terrazzano is a staff member at Newsday. She was diagnosed with cancer two years ago (she was 36 at the time … that makes her a year younger than me). She’s been writing about her life experiences in a new column … Life, With Cancer.

Lauren has my respect and admiration … even my love if you can imagine loving a complete stranger.

I have much in common with her. Neither of us have reached our fortieth birthday. Both of us have cancer. Both of us are writers. But Lauren’s cancer is lung cancer and her cancer is terminal.

She offers this advice in a recent column … “What matters is the present moment. Not two to three months. Or two to three years. Or two to three hours. Just now.”

I can’t agree more. Love you, Lauren. Thank you for blessing us with your words.

My family and I arrived at the park first thing in the morning on Wednesday, April 18th. We stood in front of Cinderella’s Castle and chanted, ‘Dreams Come True,’ along with Minnie and Mickey Mouse and wouldn’t you know it, I forgot I had breast cancer for two entire days.

That’s the dream most of us survivors share, isn’t it? To just forget that we live with this disease? To forget that we might not live to a ripe old age? To forget that we are scarred and/or disfigured? To forget that we’ve endured toxic doses of medicine that left us bald and barren and barely able to sit up let alone walk? To just … forget …

Then we show up at DisneyWorld where dreams come true.

I had one reminder of my survivor status when I saw a little boy with a disposable camera with a pink ribbon on it. I contemplated asking his mother where he got it … then decided not to!

Of course, as soon as I got back, this blog posting was shouting out at me, so reality didn’t go for good. But man, what a nice treat.

Thank you, Walt Disney, for creating a place where even grown ups’ dreams come true.

Hokie Spirit Memorial Fund

April 16, 2007, will be remembered as one of the darkest days in the history of the Virginia Tech community and the world beyond.

To remember and honor the victims of those tragic events, the university has established the Hokie Spirit Memorial Fund to aid in the healing process and generate financial support.

The fund will be used to cover expenses including but not limited to:

• Grief counseling
• Memorials
• Communication expenses
• Comfort expenses
• Incidental needs

If you plan to give, please click the link below:

I got this email blast today (and I’ll share it verbatim with you all because I think it is GREAT!):

“JANE magazine discovered in a recent survey of their readers that a shocking 75% of women say they are unhappy with their breasts. With that in mind, the May issue of JANE features “The JANE Guide to Breast Health” - a comprehensive feature promoting physical and emotional breast health. The guide focuses on positive self-image beginning with a personal essay by Editor Annemarie Conte discussing how she grew to love her asymmetrical breasts. Following the essay is a full-page of photos of real (100% natural) breasts in a variety of shapes and sizes to show readers the large range that is “normal.” The photos combat the media bombardment of false images of “perfection” that just leave women feeling bad about themselves. Each of the photographs is accompanied by the real woman’s reason for loving her breasts. The page also calls out to Jane readers to submit photos of their own breasts and their reasons for loving them to be posted on Jane’s website, janemag.com.

Geralynn Lucas, author of “Why I Wore Lipstick to My Mastectomy” will be blogging for Jane’s website, janemag.com, for the month of May. Her first posting on “Inner Cleavage” is up today. “Inner cleavage,” according to Lucas, “is a state of mind. It is a belief that you are sexy regardless of your cup size. It means loving the boobs you own. It doesn’t require a plastic surgeon, implants, padding or push up bras. It means that I am not only my bra size.”

The May issue hits newsstands nationwide on April 24th.”

In yesterday’s post I mentioned my silent recitation of The Lord’s Prayer while I laid on the radiation therapy table. I find comfort in The Lord’s Prayer because I’ve had it memorized since I was a small child (yes, I am a cradle Catholic) — that makes it easy to recite during times of duress.

I’ve read, repeated and studied each line of The Lord’s Prayer and always find it the most complete, most perfect prayer there is. (That comes as no surprise because it is the one prayer Jesus himself taught us to pray as told by Matthew and Luke in the New Testament.)

It works for me but it is important for you to know, there isn’t just one way to pray, no right way to pray, no single prayer that is the only prayer you could/should say. (There are countless prayers and types of prayer; see Wikipedia article on prayer).

The important thing to recognized is the strong correlation between prayer and healing. Prayer has been proven to relieve stress and improve one’s spirits and wellbeing. Breastcancer.org, one of my favorite resources for breast cancer patients and their families, has an article explaining the spiritual component of breast cancer treatment.

Here’s a link to the preface (and order form) for a great book of prayers called “You Are Never Alone” published by the Oncological Nursing Society … “a constant companion for the patient with breast cancer.”

If you find yourself wanting to pray right now without a resource like that or other books or your own words … you can peruse this list of belief.net prayer topics and choose a prayer that speaks to you.

Or try repeating this prayer that I wrote tonight …

Dearest Lord, thank you for facilitating our diagnoses so that we can do our part to heal the cancer growing within our bodies. Please bless all survivors with the strength we need to withstand our medical treatments. Grant the medical professionals who treat us the wisdom and skill to cure us if that is your will; and if your will is for us to live with cancer then give us the peace that is necessary to truly say … thy will be done. Amen.

I’d need 33 doses of radiation therapy after my diagnosis of DCIS in 2003 and resulting partial mastectomy.

The night before my treatment I listened to the audio CD I had been given: A Meditation to Help you through Radiation. I fell asleep while listening to it; perhaps the messages got through subliminally I wondered when I awoke. But I was still afraid of the unknown.

As I was settling in on the table the very first day I could not help but wonder why something that was so dangerous everyone else had to be on the other side of the wall was deemed safe enough for me that I could lie there with half my body exposed.

On my chest I wore semi-permanent tattoos created with a purple Sharpie. The technicians laid me down on the table and lined me up just so … just so that the radiation was purposely aimed and precisely administered at my chest.

As I laid as still as I could I remembered the advice of a woman I’d met in a bible study I attended: at moments when you have the greatest fear, close your eyes, and visualize the face of Jesus. That’s just what I did. And, I said the The Lord’s Prayer to myself over and over again until two minutes had passed and the ladies walked back in the room.

“I can get dressed now?” I asked as they went about their business.

“Yes,” they answered, smiles on their faces. Amazing. I hadn’t felt a thing, no pain, no nothing. This I could handle, I thought. This I could handle.

Back to my story … a few weeks after my partial mastectomy, I had a consultation with my Radiation Oncologist, Dr. Bruce Haffty, of the Department of Therapeutic Radiology at Yale.

Dr. Haffty was all about science. He walked into the room for that initial consultation, opened my gown, and began to scan my breasts and study my chest in a completely clinical way. Suddenly, as if he remembered I was human, he stepped back, smiled and said, “I’m sorry. My name is Bruce Haffty. It’s nice to meet you,” and he shook my hand.

Dr. Haffty then asked me if he could open my gown and take a look. I consented, of course, that was why I was there. Later that day I realized it was okay that a doctor who would be looking at technological equipment and computers and clinical printouts and measurements was just a little bit … cold. Radiation therapy is methodical, precise and to some degree, impersonal.

FYI, Dr. Haffty is now practicing at The Cancer Institute of New Jersey — Yale’s loss, CINJ’s gain if you ask me.

A simulation of my treatment protocol was scheduled for September 11th; my first set of films were to be taken on September 16th; my first day of radiation was to be September 17th. My 36th birthday was to be September 18th.

As I laid topless on the table during the simulation, in a room straight out of a Star Wars set and in front of five or six people I hadn’t met, the tears just rolled down my face. I had no physical pain that day, the red laser beams of lights that were mapping out an action plan on my chest didn’t hurt at all, but my emotional well-being was suffering greatly.

This was cancer treatment. I had cancer. It was real.

See, up until that point, I was spending a large amount of time denying anything would change in my life. A day of outpatient surgery can come and go and life can go on as if nothing would really change. But that … that radiation therapy … the simulation, the x-ray films, the 33 sessions in the radiation clinic and the physical side effects of those sessions … that was all very, very real.

Those tears I shed on that table were not the last my treatment team would be seeing, I thought, unless I came up with something to get me through my treatment.

A study that was in the news last week after it was published in the New England Journal of Medicine showed that expensive, high tech mammography machines didn’t help radiologists “find more tumors and significantly increased the number of false alarms.” I read about this study and the scrutiny these pieces of equipment are under in an article in The Washington Postthat highlights the debate about mammography screening in general. This whole issue begs the question: what is better, a false alarm from an imperfect screening measure (an area of the breast that look suspicious but in actuality, is not) or an undiagnosed cancer?

As someone who was diagnosed with breast cancer at age 35 at an early stage, I say the latter. I would rather go through a litany of tests and find out I didn’t have cancer then have cancer and not know about it.

Then Reuters releases this information today: women who experience a ‘false positive’ are more likely to do self-breast exams and more likely to return for subsequent mammograms. However, they experience higher levels of anxiety than they should have to when it comes to a routine screening procedure and that anxiety can have lasting effects. Hello? Anxiety? Imagine the anxiety of getting diagnosed with a breast cancer that had been growing in your body undetected and unbeknown to you for years and learning that had you been screened your cancer might have been detected earlier and you might have had a better chance to fight the disease and live if you had gotten regular mammograms? Is there really a comparison?

(Thanks to Soochal at Flickr for the beautiful photograph.)