Discussing Breast Cancer

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.

When I was diagnosed with DCIS in 2003 I was treated quite typically with surgery and radiation. To be specific, seven weeks of radiation therapy, seven long weeks (technically just shy of seven).

Each weekday I headed up to the clinic at Yale and laid on the table for a five minute (or so) blast to my chest. By the end, I felt like I’d really been through something huge — and that was reassuring to some degree. It would take something huge (like a long period of time) to tackle something huge (like cancer). Since I skirted by without chemotherapy (which would really have me feeling I’d earned my survivor status), at least I had those seven weeks of treatment to make me feel I was really fighting.

Hard to imagine how I would have felt if it were only one week. However, electronic brachytherapy for the treatment of early stage breast cancer — using a small electronic, low-energy X-ray source that delivers controlled radiation treatment directly to the targeted area — I’m not too sure how I would have felt about that. Would one week have been enough time to allow me to feel I fought a good fight in my battle with breast cancer?

There are a few system for this type of radiation. One implants a small, balloon-like device, at the targeted area then twice a day for five days, the balloon is expanded and a miniature X-ray tube is inserted. Another uses several catheters (like 10-20). Here, read more about the technologies here or keep reading to get to the question I want to pose to you today.

Accelerated partial breast irradiation. What do you think? Worth limiting the duration of your treatment if you’re diagnosed at an early stage? Or, limiting the way you perceive your role in the fight?

breast cancer, cancer, DCIS, radiation, brachytherapy, health, wellness, health and wellness, survivor

Whether or not a survivor even questions the presence of her ovaries in her body depends on the results of her pathology and the answer to one specific question: is her cancer estrogen receptive?

If she is, and the cancer in her body ‘feeds’ on estrogen, there are treatment options to consider that will either (1) suppress her estrogen production with pharmaceuticals (Tamoxifen tablets) (2) chemically stop her estrogen production (Zolodex shots) (3) remove her estrogen production (Oopherectomy).

(more…)

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.

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?

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.

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.

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.

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!