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pink ribbonI met Jennifer through this blog and then through church. It turned out we’d been going to the same church for a few months before meeting here. I didn’t know however, until church prayers a couple weeks ago, that Jennifer had been working through a number of choices related to her breast cancer.

Jennifer hasn’t read The Art of Dying, but this post (reposted from her blog) exemplifies the lessons of the art of dying. Not that Jennifer is dying. Lord willing, she has decades in front of her. But this piece shows a willingness to think through the options she is faced with and to do with an eye toward how her values and beliefs should shape the medical care she chooses.

After reading, please remember Jennifer and the Merck family in your prayers.

A Decision

Some stories just need to be told backwards … because telling them frontwards is too difficult. This is going to be a little like telling you the punchline to a joke before telling you the joke (except it’s not funny at all). My husband always gets frustrated when I (inadvertently) do this to him. But I think this is the only way I can dig into this particular story.

Here’s the bottom line: I have breast cancer. On another day, I’ll tell you how I got here. But today, I’ll tell you about an important decision I’ve made.

After much research, prayer, and consideration, I believe I have arrived at a treatment plan for my ductal carcinoma in situ (DCIS). In the course of my research, I came across an interesting statement by Dr. Monica Morrow, of the Memorial Sloan-Kettering Cancer Center in New York City, formerly of the Northwestern Memorial Hospital Cancer Center in Chicago:

“‘You need to take the time to understand your options,’ Northwestern’s Morrow stresses. ‘If there’s ever a disease that’s worthwhile seeking a second opinion on, it’s DCIS.’” This was helpful confirmation for the path I chose to pursue.

During January and February, I met with medical oncologists and radiation oncologists at St. Alexius Medical Center in Hoffman Estates, Loyola University Medical Center in Maywood and Rush-Presbyterian-St. Luke’s Medical Center in Chicago, and consulted with a medical oncologist at the Mayo Clinic in Rochester, MN. What has become clear is that the particulars of my situation make a decision regarding proceeding with treatment a bit controversial.

Discussions with the doctors, as well as my review of the literature over the past two decades demonstrate several assertions:

1. Local excision (lumpectomy) is the universally agreed upon first step in treatment. That’s good, since I’ve already done that : ).

2. Radiation following lumpectomy is considered standard treatment for DCIS.

3. Tamoxifen (hormone therapy) for 5 years is considered standard treatment for DCIS.

4. There are varying opinions and lots of research has been done and is being done to attempt to identify sub-groups for whom radiation and/or tamoxifen do not make a sufficiently significant difference to outweigh the risks to either or both.

So, my focus has been on figuring out the ramifications of #4 for me, that is, could I be in one of the sub-groups for whom it would be reasonably safe to not pursue radiation or tamoxifen.

Of course, as you might imagine, the bottom line is that we don’t know and research is ongoing. But having weighed everything I have thus far, I’ve come to a decision to not do radiation, to give tamoxifen a try, and to proceed carefully with mammograms every six months for a while so as to keep an eye on things.

I’ll start tamoxifen in the next few weeks and may take it daily for as much as 5 years. Many breast cancer cells (including mine) receive a growth message from estrogen. The way that tamoxifen works is that it “‘pretends’ to be estrogen and attaches to the receptors on the breast cancer cells, taking the place of real estrogen. As a result, the cells don’t receive the signal to grow.” (www.breastcancer.org) Tamoxifen has the benefit of reducing my risk of ipsalateral recurrence (same side), as well contralateral occurrence (opposite side).

So, the next part of this journey begins. I feel confident in the information I have gathered and in the processing I have done to make this decision. Thank you for your prayers and advice. They have meant a lot to me.

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6 thoughts on “Jennifer’s Story–Choosing Breast Cancer Care

  1. Rob,

    I’m a fellow author and respect your book on The Art of Dying. But I gotta point out that this gal Jennifer is off the beam with this info, and since my last book was on breast cancer survival, I think I should write something.

    Breast cancer comes in a million “flavors” and the kind she has (DCIS) has never killed anyone and never will. DCIS NEVER leaves the breast, it is non-invasive. Her treatment is strictly to prevent her DCIS from possibly evolving into a dangerous kind of breast cancer. She should have it surgically removed and tamoxifin is fine–but believe me, this is minimal treatment. (To put in perspective how common DCIS is, 1/3 of women who die of other causes have DCIS if an autopsy of the breasts is performed. )

    Prayer is great–I’m all for it. But let’s not scare other women with DCIS out there, and give them some crazy idea it could kill them. And let’s not class women with invasive breast cancer with this gal. She’s over-dramatizing and needs to get the facts straight. Invasive breast cancer is deadly–DCIS is a tiny bump in the road.

  2. Cheryl, I appreciate your perspective on Jennifer’s post, but your tone seems very insensitive. As you are a fellow survivor, I guess I’d expect a bit more compassion.

    Jennifer doesn’t seem to be “over-dramatizing” anything. In contrast, I think she has done a great job of explaining how she has weighed her options. As the daugher of a survivor (who had a mastectomy, chemo, radiation, and tamoxifen), I remember well this type of weighing when my mom was diagnosed with breast cancer. Jennifer’s words didn’t seem “scary” to me at all.

    Also, Jennifer never compares her situation to that of a woman with invasive breast cancer. To diminish her experience as merely a “tiny bump in the road” is simply unkind. Unless it’s invasive, is no breast cancer the real deal? I’d have hit the roof if someone had told me my mom’s cancer was “a bump in the road” because she, for example, had only one breast removed instead of two. Certainly cancer is horrific in degrees, but it is still terrible.

  3. i applaud you, jennifer, for researching all the options available to you and getting many professional opinions before coming to your decision. none of the medical procedures and treatments you have gone through already and will go through in the future are easy, and i pray that you’ll receive great strength and ultimately healing from this terrible disease.

    also, rob, i love reading these personal stories. keep em coming!

  4. Greetings to you all. I am a breast cancer survivor of ten years now, and I am now in a position to help a dear friend through exactly what I went through. Cancer of any kind and at any stage is more than a bump in the road of life. Life is precious. The ‘C’ word is dreaded by everyone, and was by me for many years before my diagnosis. I was full of lumps and bumps of all kinds….for a good 10 years before I noticed my ‘REAL BUMP’. And, that real bump had been growing for 3-5 years. It was horrible. My husband and I cried for days and days….for weeks. I was 48….and many are much younger. I was a mother who still had teens and young adults to ‘see through life’ and help in ways a mother dreams of. I had my mastectomy, my chemo, my radiation, my tamoxifen, my femara. They say I am done. By the grace of God, who alone brought me down this path thus far, I will not see cancer again. However, I might again be put through the test….and if I am, it will be more than a ‘bump in the road’. It will again be a traumatic event that again changes my life forever…the way I think about myself, my family and what is important to me. God alone will be my strength . Folks….love your neighbor, do what you can for others. And be sure to help those who are suffering a ‘bump in the road’. For them it is more than a ‘bump’. I have been there.

  5. Cheryl I am shocked as an author of a breast cancer survival book that you can completely be lacking empathy for this woman. I am 31 and just recovering from two surgeries and awaiting treatment for breast cancer that started as this woman’s did and broke out of the ducts and became invasive, no one knows why, then a tiny piece broke off into the glands so I had to have an axillary clearance and now preventative treatment that thank god does not include chemo lucky for me as a few years ago it would have being so young. BUT if someone undermined what I had experienced with phrases like bump in the road and minimal treatment I would be crushed. EVERY WOMAN OR MAN EXPERIENCES BREAST CANCER IN DIFFERENT WAYS AND TO DIFFERENT DEGREES, Some breeze through it or appear to and power to them and others find it from diagnosis stage onwards living hell no matter the treatment or outcome this you should be well aware of. Sure we should never scare people into believing they may well die but that is personal choice, as for me even from word go I was not willing to accept my cancer could be remotely terminal although it crosses your mind from time to time. One persons bump is another persons mountain and no one can lay any judgement on this whatsoever.

  6. Thanks for the comments. I’m going to briefly clarify, because there is so much bad information out there about breast cancer. Women are dying because they are believing myths and not making good decisions.

    DCIS is NOT the same as invasive breast cancer. DCIS is a precancerous condition which (if left untreated) could eventually turn into cancer. To quote right off of Susan Love, M.D.’s website:

    “The goal of treating DCIS is prevention. As long as the precancer is COMPLETELY removed, it can neither come back nor become invasive.”

    Sarah, the only possible reason your treatment did not succeed is that either your DCIS was not completely removed surgically, or that you already had invasive cancer and it was missed. If a surgeon told you “no one knows why,” you need to find a different surgeon. It seems highly likely you did not get the best medical treatment. One thing we must realize is that 40,000 people die every year in America because of medical mistakes. Doctors vary greatly in their skills, experience and none of them are infallible.

    As far as the “bump in the road” comment, that was what my oncologist said to me about my invasive cancer, during my chemo. Yes, it irritated me at the time, but I greatly appreciated it later. As my breast cancer sisters taught me, the FEAR of cancer is often more deadly than the disease itself. Fear robs us of our ability to act immediately and intelligently, marshalling all of our resources and taking complete responsibility for every decision we make.

    I have an eight year old girl I adopted from Guatemala. Every day I help her understand what is life-threatening and what is not. To allow her to believe that something could kill her (and to mislead others into believing so as well) when it could not, is not insensitive. It is compassionate, caring and could someday save her life. The truth sets us free–in all areas of our lives.

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