Discussing Breast Cancer

The Blogger’s Choice Awards were accepting nominations for Best Health Blog and I took it upon myself to nominate Discussing Breast Cancer! Shameless, I know, and so is this plea for votes. But already Discussing Breast Cancer is a top contender in the category — it currently has 12 votes and the one in the lead only has 25; we can take ‘em!

Please visit the site and cast your vote to show your support for ALL breast cancer survivors!

Thank you, thank you, thank you!

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.

I love it when I’m in the news. It means I’m successfully raising the world’s awareness of breast cancer, focusing people on the importance of early detection, and helping women feel empowered as a result.

You’ve heard of the AP (Associated Press)? Well, my post the other day on When to Start Getting Mammograms raised the interest of the powers that be at asap, the “AP’s unique, provocative, smart and creative multimedia news service.”

Here’s the asap article that is already being picked up by other papers (like in Pennsylvania and Ohio).

LOVE it.

Today I’m drinking my “to go” cup of coffee in my new Einstein Bros. cause worthy travel mug. My husband brought this pink beauty home for me over the weekend; $1.50 was donated to the Susan G. Komen Breast Cancer Foundation as a result of his purchase of $16.99.

Today, lots of people sport pink ribbons, or use a “pink” products, as a way of showing their support for a survivor friend or family member. It’s easy to do because the retail world is covered with wonderful “pink” products. And let’s face it, it means so much to us survivors, even if it seems overkill at times.

When my husband wears his Making Strides Against Breast Cancer shirt, I am filled with compassion and love; he loves me so much he’ll tell the world that he supports me in my fight. And forget it, if my kids want to wear a pink ribbon pin on their clothes? I just about rip my face apart with my smile.

One of the best ways to show support for someone with breast cancer is to show them that you think about the disease and their battle with it all the time — because God knows they think about it all the time.

So thanks Einstein Bros. — for a good cup of Joe and a good mug to go.

For readers who are new to my writing … when I discover cause worthy products that I love, I’ll showcase them (and in case you are a marketer, the greater the contribution to the cause, the greater my respect for you, so thank you!).

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.

Yesterday’s announcement sidetracked me a bit so let me back up … we were discussing how to help your kids cope with a cancer diagnosis.

I knew my kids would need special attention while I was “sick” — at about two and four they were still babies in my eyes. As their primary caregiver, caring for them was my top priority on a daily basis; their welfare was my top concern when I realized I’d need treatment. I knew I’d have doctors appointments, surgeries, radiation therapy, maybe chemotherapy. While my life was about to be markedly changed I felt it was important for my kids to have a consistent routine, a loving caregiver and more daily fun than they’d ever experienced. I figured if I could “reframe” the experience into a positive one for them we’d all be better off.

I was blessed in that my mother didn’t live far and was able to come over much of the time I was in treatment. Because of that, I was able to achieve all my goals for their care. She met their basic needs but also got on the floor and played with them every day. They looked forward to her arrival. One day when my treatment was over he asked her if she remembered, ‘the good old days,’ when she used to come over and they would play together. The good old days. Can you imagine?

There’s also lots of quiet activities I found my children content to do while I was in bed. I purchased them lap desks so they could color by my side. They watched favorite DVDs and videos while I dosed. We read, and read, and read, all kinds of books. I swear, their love of reading might be directly related to the bond we shared with books during that time. They also had sleepovers at their cousins’ houses and special outings with Dad. Really, they were having a blast.

But let me get back to those basic needs …

My sound advice is to urge people to resist the temptation to ask them to take care of mommy because what they really need to know is who is going to take care of them. My oldest son, six years old at the time of my second diagnosis (I know, I’ll get to that soon) actually asked this question of me:

“When you’re sick, who is going to make my school lunches and stuff like that?”

Moms do it all and your kids know it. Don’t underestimate how important this is to them, how recognized it is though it mostly goes unsaid, and reassure them that another grown up will step up and take care of them when you cannot.

Also, never forget how much they love you, and as long as their basic needs are met, they just want to be with you. So work that in as best you can … just be close to them even if you can’t be up and about.

Finally, demystify the whole experience for a slightly older child if you can. I brought my four year old to the radiation therapy clinic one day just so he could see what is was all about. He still talks about seeing me wave to him on the monitor that day while sitting on the technician’s lap. He realized it wasn’t as scary as he had built it up to be in his head once he saw it with his own eyes.

FYI, I gave my boys these activity books from the American Cancer Society: Because Someone I Love has Cancer.

And here’s a link to some other great books on the topic of helping kids cope with cancer.

You might question when you should get a baseline mammogram, when you should start getting regular mammograms and how often you should get mammograms once you start. Even the guidelines can be confusing:

This is so dangerous … it makes me nervous just thinking about it!

Yes, there are risks associated with mammography primarily because it is a form of radiation, like an x-ray.

But mammography saves lives (just read this information based on an American Cancer Society study).

Fewer women die from breast cancer after mammography becomes routine.

Let me say that again … fewer women die from breast cancer after mammography becomes routine.

Cancer caught earlier responds better to treatment.

If I didn’t go for that baseline mammogram when I was 35, the cancer that was growing in my body would have gone undetected for at least five years until I went for my first mammogram when I was 40. If I didn’t go for that mammogram when I turned 40 … well, I can’t even speculate, but I’d venture to guess that I wouldn’t have had a curable disease.

Remember … I didn’t have a family history of the disease. I didn’t have a palpable lump. I had a strong sense that something was wrong with my body and I acted upon it.

There are no studies to back up that reason for getting a mammogram. Just common sense.

After my breast cancer diagnosis, I realized I’d have to explain to my children what was going on in a way that they’d understand and wouldn’t scare them or bring on unnecessary stress.

They were 2 and 4 years old. How much did they need to know? How much could I protect them from? I did some research online made a phone call to the American Cancer Society to ask for guidance.

Regardless of your children’s age, here’s a universal truth: telling your children something right away takes some fear off their minds — they’ll already know something is wrong because your routine will be altered and your anxiety and stress will show in your parenting. Don’t let them think the worst and worry on their own. Be matter of fact and age appropriate in your explanations. Conceal some of your own anxieties (only the worst ones) but don’t be afraid to show them some as well — they’ll share it with you instead of wondering if it is worse than you are letting on. Tell them to ask you any questions they have … and answer them honestly as best you can. And do some reading before the questions come up so you aren’t caught off guard. They may ask you about losing you, either temporarily because of a hospital stay or because you’ll die … be prepared to talk to them about it, don’t just brush off their concern. Make sure they understand that you are sick, but it is not a contagious kind of sick. They won’t catch it from you. They may also wonder who is going to take care of them if you are unable to — reassure them that they will be cared for no matter what!

My age-appropriate explanation went something like this:

“Our bodies are made up of cells, like Ms. Frizzle explains on the Magic School Bus, remember? Well, Mommy has some sick cells in her body. I need to have them removed and take some medicine to make sure my cells stay well. I need to make important phone calls to arrange my doctor’s appointments and understand my treatment and I might need to be on the phone a lot in the next few days. Can you cooperate with me on that?”

If you take the mystery out of it, they won’t be as stressed that they are being left out of something important. Allow them to be a part of it. It is their reality, they have a mother with breast cancer, and that will not change. It will make them who they are as adults; it is a part of their life story and the sooner you accept that, the more easily you can factor it into your parenting decisions.

It is possible your kids would benefit from a support group or counseling. So look for signs that they are internalizing their situation. Is their stress coming out in their artwork or schoolwork? Are they acting out? Alert their school teachers and social workers to be on the lookout as well … they can help you and alert you to any issues they notice when your kids aren’t in your care.

Remember, children don’t necessary have the experience to equate cancer with death the way we do as adults. My nieces were older (6, 8 & 9) … it didn’t dawn on them that breast cancer and death often went hand in hand until supportively went to a Relay for Life event and saw the luminaries … that’s when they needed reassurance. So if your child is older, you may want to be prepared to talk about death (especially if you are dealing with late stage disease). Charlotte’s Web is a great book to read, too, that features death and grief as a natural part of lie.

Of course, each age brings a different level of understanding; my simple explanation won’t work for older kids. Subsequent diagnoses also brings great stress and new questions, I can attest to that personally, but we’ll discuss that in a later post).

Your diagnosis is out of your control. But you can control how you and your kids are armed to fight. Here are some links to help you assess how to take up arms:

The American Cancer Society has some great resources to help children deal with a cancer diagnosis.

Cancer Care for Kids is another resource you should check out.

Finally, KidSupport has great information to peruse and use.

Throughout your treatment, check in with them from time to time, ask if they have questions or concerns. And give them as much attention as you can. When I was in treatment, I found really clever ways to give attention to my kids. I’ll share that with you tomorrow!

The call to inform me I had breast cancer came in on Thursday, July 17, 2003. But each time the phone had rung between the time I walked out of that hospital door and the time the call actually came in I’d have an adrenalin surge.

The biopsy was positive for intraductal carcinoma in situ. I wrote down the words as the surgeon explained them to me. I knew that carcinoma meant cancer so I stopped hearing what she was actually saying because my head was reeling with that single word. Carcinoma.

I had DCIS. Stage 0 breast cancer. Historically considered ‘pre-cancer’ but now known to be the pre-cursor to a more advanced form of the disease. My surgeon had booked an OR for the following Thursday.

I wrote down as much information as I could. Then, I picked up the phone and called my husband at work. “I got the call,” I told him. “I have breast cancer.” He was speechless, of course. The information is impossible to process. His wife, friend, lover, mother to his children … had breast cancer.

I tried my parents’ house, no answer. My mother’s cell phone, no answer. So I packed up the boys and just started on the half-hour drive to their home. I needed my mother.

My parents phoned me on my cell phone as soon as they saw that I’d called. When I told them the biopsy was positive there was silence on the other end of the phone. After all, I was their baby, their youngest child and I was telling them I had cancer. What words could they possibly use at that moment?

Within minutes (so it seemed) of my arrival at my parents’ house they came home; my husband also arrived at their house (who could possibly work when their spouse tells them they’ve been diagnosed with cancer?).

Together we tried to process the information my surgeon had given me on the phone. I was 100% treatable. I’d most likely need surgery then radiation therapy. But I was 100% treatable. We pondered over the fact that she didn’t say, ‘curable.’

I knew this meant that I wouldn’t be taking that business trip so I called my client and again, there was that silence on the other end of the line.
Apparently shock, devastation and speechlessness are linked in your brain’s processing unit.

Then it hit me hard: if this is how the adults in my life were taking the news, how would I tell my children?