Discussing Breast Cancer

If you’ve found this blog, it’s also quite likely that you took to the Internet quite quickly after learning that you had breast cancer, searching for information on the disease, its treatment and its repercussions.

My doctors warned me specifically to be careful when doing Internet research — and they had good reason to do so. According to a new study, one in twenty breast cancer web pages contain inaccurate information … and web sites devoted to complementary or alternative medicine were fifteen times more likely to have false information.

(From a recent press release: “The study is published in the March 15, 2008 issue of CANCER, a peer-reviewed journal of the American Cancer Society, and suggests that patients consult clinicians before taking action on breast cancer information gathered on the Web.”)

I hope it goes without saying that you guys should be careful. The best place to turn for information is your physician’s office. Make your decisions based on the information provided to you by your medical professionals.

Your best bet? Find a National Cancer Institute Designed Cancer Center near you — visit that organization’s website first and foremost. Trust the American Cancer Society — they’re the most reliable source you’ll find online.

And trust me … to lead you in the right direction.

Survivors often find themselves in the midst of depression. They’re facing their own mortality, for one. They’re tired, sick, sore … it’s tough to pick yourself up mentally when you don’t feel good physically. It’s been said that hormone fluctuations affect our mood - chemotherapy and hormone therapy reek havoc on your natural hormone levels. And it’s wintertime (here in the Northern Hemisphere at least) … and these cold, dreary days are for the birds.

You’re not alone. Up to one-third of women diagnosed with breast cancer face mood disorders of some type.

Here’s what I need to tell you: it’s important to get help. If not for yourself, for your children: Research indicates that children of depressed breast cancer patients are more likely to be concerned or anxious about their mother’s cancer and its implication for their families.

My recommendation:

(1) Talk openly about your disease with your children — the positive spin you’ll likely want to put on it for their sakes will benefit your own psyche as well.

(2) Talk openly about your disease with whoever you have around you — it’s therapeutic to share those negative emotions. Purge them, get them out, so you can put all the energy you can muster up towards your treatment. Got nobody? Comment here or on an online support site like breastcancer.org.

(3) Talk openly with a medical professional. They can prescribe medication to help manage your mental distress. This is not the time to be too proud, or too vain. Get help. Nobody should go into battle without a fully loaded arsenal. If you already take something, tell them it’s not working. They need to know.

Don’t deal with depression alone.

Let me tell you about my day:

8:00 - 9:00 am: I rustled my boys out of bed to get to the coffee shop because I had no coffee at home; then, I picked up four other boys (my turn for camp carpool) and got all six boys to camp.

9:45 - 12:45 pm: I arrived at the first physician’s office building then waited almost two hours to be called for my 10:30 am appointment; I finally was called, then saw the nurse practitioner, my medical oncologist and a phlebotomist.

1:00 pm - 1:30 pm: I arrived at the second physician’s office building and waited less than fifteen minutes to be called for my 1:30 appointment; I was seen by my gynecological oncologist’s nurse practitioner.

1:50 - 2:45 pm: I shopped at Costco to stock up on some supplies for our upcoming vacation; I considered all the samples they were giving out lunch and wished I had a nice cold Diet Coke to go with them.

3:00 - 3:45 pm: I got a pedicure; it was during this pedicure that I lost the bad mood I found myself in most of the day.

4:00 - 8:00 pm: I picked up all six boys from camp, brought them to their respective homes, met up with my father who returned my daughter to me, I fed and bathed my kids, then put them to bed.

(more…)

Alright, let me bring the new readers up to speed since my story is taking months to tell (truth be told, I purposely digress at times).

I was initially diagnosed with DCIS (ductal carcinoma in situ) in July of 2003 at the age of 35; I had a partial mastectomy and radiation therapy then went on Tamoxifen and was supposed to stay cancer free.

I was diagnosed with Stage 1 IDC (invasive ductal carcinoma) in April 2006 at the age of 38; I chose to have a double mastectomy and wanted immediate reconstruction. Having had radiation therapy before, implants weren’t my best reconstruction option, so I decided on a pedicled TRAM flap. My plastic surgeon, Dr. Narayan, explained how he’d take my abdominal fat and muscles and move them to my chest. If you’re a skinny minis, you wouldn’t have enough to work with, but apparently I hadn’t dedicated my breakfast time to Special K. Dr. Narayan could certainly pinch an inch and actually, he could pinch 3 inches. In each hand.

“What is your cup size,” Dr. Narayan asked me.

“I’m a ‘C’ cup,” I replied.

“Hop on,” he said as he patted the exam room table. I climbed up, lied down, Dr. Narayan lifted my gown to expose my stomach and literally grabbed my two handfuls of my belly then said, “yes, you’ll have enough.”

I’d never felt so glad I had some belly fat.

Then the real kicker.

“Did you ever smoke?” he asked.

“Socially,” I replied. “In college.”

Then the disapproving look. Apparently when you combine even limited cigarette use with previous radiation therapy you’re at risk for TRAM flap failure. Who knew?

So Dr. Narayan wanted to do a preliminary procedure to ready the tissue for the surgery, to improve the blood supply to the area. He called it a delay procedure (don’t let the name fool you, it happens before the reconstruction). The delay procedure was an ambulatory surgery. It was supposed to be a piece of cake. In and out. No big deal.

No big deal???? HA!

Dr. Narayan sliced a six inch piece of my abdominal pie then the nice nurses at the Temple Surgical Center sent me home. Goodbye!

I couldn’t walk. I could barely sit. I couldn’t believe it. I had an incision in my abdomen as big as those my friends had gotten when they had C-sections and I thought I was going to walk out of there and resume life as normal. Holy crap, talk about underestimating ambulatory surgery.

It was ten days prior to my mastectomy. I was supposed to have those ten days to get myself mentally prepared for ‘the big day.’ Instead, I had ten days to freak out because I was so incredibly unprepared for my delay procedure.

Of course, just when I started to get better … I was headed to the OR again.

Breast Cancer, Mastectomy, Reconstruction, Surgery, TRAM flap

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’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.

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.

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.

I just read this great post over at Mental and Emotional Health about pharmaceutical noncompliance. Noncompliance is a huge issue in the breast cancer world — so huge I thought I’d touch upon it here.

A 2006 study at the Dana-Farber Cancer Institute stated that 1 in 5 patients may not adhere to prescribed hormone therapy. Hormone therapy that is intended to prevent recurrence and keep survivors alive.

There has been tons of research into just how dangerous this is for a survivor (just read these findings from a study covered in the European Journal of Cancer).

Some noncompliance is due to forgetfulness; face it, we’re all quite busy. My OB/GYN has been telling me for the last twenty years to take a daily multivitamin and do I always remember? Hardly. Thank God I’m better at giving my kids their Flintstones vitamins each morning.

Some people might not understand their dosage instructions and find themselves too embarrassed to ask for clarification (especially if they’ve asked before). Please don’t feel this way … you can ask them over and over and over again if you need to. It’s their job to help you and they want to help you, too.

Cost might be an issue for some people. There are resources though, please don’t let this stop you — look to the National Cancer Institute for information on financial assistance.

There are those blasted side effects … the most likely culprit. I can’t say much about this because you do have to weigh the pros and cons. But each time I’ve done this, life with side effects wins over the alternative each time.

Finally, there’s denial … please don’t let this be your reason not to take medication. You’ve had breast cancer, it was real, and if you aren’t able to come to really recognize this … I’d love for you to get help. Your emotional health matters just as much as your physical health.

The morning of August 18th, my husband and I headed up to Yale first thing in the morning. The kids were at my mom’s so we didn’t have to worry about them, all we had to do was figure out what to listen to on the radio during the 1/2 hour car ride.

Our first stop at Yale was mammography; I know, I’d already been there, done that. But the surgery I was to have required one additional step: wire localization. Basically, the radiologist in mammography would insert a wire into my breast as a guide for my surgeon in the OR — he’d know exactly where the malignancy was and could be more precise in his surgical efforts.

Of course, I was awake for that, then had to be wheeled to the hospital OR with a wire sticking out of my body. Not very pleasant!

In the OR, I was given drugs to relax me … I was sort of asleep for the procedure but also sort of awake, and though I felt nothing, I was aware of what they were doing. I even heard the surgeon on the phone with pathology confirming that the margins looked good.

As I was coming out of that groggy place, I heard the doctor explaining the procedure to the nurse that was tending to me. I saw my husband, smiling, relieved it was over. Very little time passed and I was able to go home that day. The incision healed quickly, and though I was to baby it for a while, I hardly had any restrictions. It was nothing … kind of odd, actually. It sounded so much worse than it was.

When the pathology came back, it confirmed that I had Grade 2 DCIS but indeed, the margins looked clear, which meant I didn’t need a follow up surgery and wouldn’t require chemotherapy. It was a huge success, a huge relief. At that point, I was left with just one question: would I be starting radiation therapy before my son’s 4th birthday on September 15th or before I turned 36 on September 18th.

In previous posts I shared what led me to get my initial diagnosis of breast cancer … now I’ll share what led me to get a second opinion.

During that fateful phone call on Thursday, July 17, 2003, when I received my diagnosis, the surgeon explained she had booked an OR for the following week to perform a lumpectomy. The fact that she did this without consulting me first terrified me. If I was truly Stage 0, why the rush? Didn’t I have options? Besides, I had a vacation planned … if this wasn’t an emergency, couldn’t this wait until I returned from my vacation?

I called back the next day and questioned the receptionist; she recommended I do some research on my own over the weekend, starting with a quick read of the book, “The Breast Cancer Survival Manual,” by Dr. John Link, “a step by step guide for the woman with newly diagnosed breast cancer.”

Of course I got the book that night and started reading. After reading the acknowledgments and the introduction I read the most important chapter of the book. Chapter 1: Second Opinions.

At that point I recognized that the surgeon I’d scheduled the biopsy with was a general surgeon, not a breast surgeon, and the hospital she was affiliated with was not a renowned cancer hospital.

I needed and wanted a second opinion even if it would take time and money. And it needed to be with a cancer specialist. I owed that to my children.

On Monday, I consulted US News & World Report’s List of the best cancer hospitals. I’m only an hour North of New York City, so I visited the Memorial Sloan-Kettering Cancer Center website, the number one cancer hospital on the list, and found an 800 number. I called.

The woman on the phone from MSKCC recommended I make an appointment at the Yale Cancer Center, another one of 39 National Cancer Institute Designated Cancer Centers and the only one in Connecticut. She said they’d gladly see me at MSKCC and discuss my case, but since I had young children and was in close proximity to Yale, a hospital they regarded as excellent, I should start there. If I was unhappy with the service and attention I received at that consultation, however, thought they doubted I would be, I should call back and get an appointment at MSKCC.

I called Yale first thing the next morning. My surgery was scheduled for Thursday, remember, only two days away, and I wanted a second opinion immediately!

Amazingly, the oncology department had a cancellation for Wednesday afternoon. I snagged that appointment. I scrambled to the various offices to collect my mammogram films and biopsy report and headed up to New Haven.

The medical oncologist, Dr. Gina Chung, was surprised I entered their system through her. Usually with cases like mine, initial appointments were made with a breast surgeon, because that’s the ‘first step.’ But coincidentally, Dr. Donald Lannin, the Executive Director of the Yale Comprehensive Breast Center and Professor of Surgery for the Section of Oncologic and Endocrine Surgery happened to be on the floor.

Some things happen for a reason. If you’ve never believed that before you start to believe that after a cancer diagnosis.

Both doctors spoke with my husband and I that day. They both agreed with my previous surgeon’s recommendation to start with surgery — but explained it should be more of a partial mastectomy rather than a lumpectomy because there was no lump, just some milk ducts filled with cancer cells. They both agreed I should go there because of their credibility as a cancer treatment hospital.

Then they explained that Elspeth Knill-Selby, A.P.N., Affiliated, Surgery, would call me to schedule the partial mastectomy. After my surgery we’d meet again and go over the resulting plan for treatment based on the pathology results. He told me to rest assured that a few weeks wouldn’t make a difference, so since I already had vacation plans, it could wait until I got home.

I made the decision on the spot to switch to their care.

Before I left, they asked if I’d be willing to let them review my case in their Wednesday afternoon clinic — I jumped at that, immediately seeing the benefit of affiliating my case with a teaching hospital. I’d have the best and the brightest minds looking at my films, my biopsy report, and eventually … my pathology.

I went home, canceled the surgery that the original general surgeon had scheduled on my behalf. Elspeth called me to schedule a subsequent surgery with Dr. Lannin on August 18th.

I relaxed … having done my homework and taken control I felt far more empowered than I had expected.