THCB

We Have Cancer

Cancer.  It’s a word that creates fear and uncertainty.   Many of the doctors I know use the word “hate” whenever they discuss their feelings about cancer.

Last Thursday, my wife Kathy was diagnosed with poorly differentiated breast cancer.    She is not facing this alone. We’re approaching this as a team, as if together we have cancer.  She has been my best friend for 30 years.  I will do whatever it takes to ensure we have another 30 years together.

She’s has agreed that I can chronicle the process, the diagnostic tests, the therapeutic decisions, the life events, and the emotions we experience with the hope it will help other patients and families on their cancer treatment journey.

Here’s how it all started.

On Monday, December 5, she felt a small lump under her left breast.   She has no family history, no risk factors, and no warning.   We scheduled a mammogram for December 12 and she brought me a DVD with the DICOM images a few minutes after the study.   On comparison with her previous mammograms it was clear she had two lesions, one anterior and one posterior in a dumbbell shape.    I hand carried the DICOM images to the Breast Center team at BIDMC.

On December 13 she had an ultrasound guided biopsy which yielded the diagnosis – invasive ductal carcinoma, grade 3.

We assembled an extraordinary team of Harvard faculty – a primary care provider (Dr. Li Zhou), a surgeon (Dr. Mary Jane Houlihan), a medical oncologist (Dr. Steve Come), a radiation oncologist (Dr. Abram Recht),  a pathologist (Dr. James Connolly), and a skilled breast imaging team.   I also contacted my associates from the genomics research community.

On December 16, after my daughter’s last final exam at Tufts, Kathy told Lara about the diagnosis.   Lara immediately offered her love and support.   We also told the grandparents.

Today, Kathy completed a bone scan and chest/abdominal CT.   Both are negative for metastases.

We also received the receptor studies from the tumor tissue.

HER-2/neu gene amplification – Not Amplified

Estrogen Receptor – Strong

Progesterone Receptor – Strong

Our next step is to complete the staging via an ambulatory surgical procedure on Friday – a sentinel node biopsy to determine if the lymph nodes closet to the tumor have evidence of malignant cells.

Summarizing what we know thus far – the tumor is less than 5 cm, poorly differentiated/fast growing, not yet spread to bones or organs, HER-2 negative and Estrogen/Progesterone Receptor positive.   Once the staging is completed we’ll be able to finalize a treatment plan and determine an estimated 5 year survival rate.

Likely, she’ll begin with chemotherapy to be followed by a left mastectomy in early 2012.

We’ll also explore her genome to understand the risk factors and determine if a bilateral mastectomy reduces future risk.

We’ll face many decisions ahead and many emotions.   We’ve already assembled a community of supporters.

1 in 8 women will develop breast cancer in their lifetime.   We never thought we’d be the one.

My Thursday blogs for the next 6 months will document our progress on the healing journey.

Thank you for your prayers and support.

John D. Halamka, MD, MS, is Chief Information Officer of Beth Israel Deaconess Medical Center, Chief Information Officer at Harvard Medical School, Chairman of the New England Healthcare Exchange Network (NEHEN), Co-Chair of the HIT Standards Committee, a full Professor at Harvard Medical School, and a practicing Emergency Physician. He’s also the author of the popular Life as a Healthcare CIO blog.

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AnonymousBonnie WilliamsMaryAndreajerrys Recent comment authors
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Anonymous
Guest

John, I am a physician as well. Many months ago, I went in for a screening pap smear. No big deal, just a routine check. I have an old cell phone and missed the message that my Gyn left me on a Wednesday night. I finally realized on Friday evening that I had a voice mail message and played it. The doctor told me neutrally, in the voice that doctors use to tell other doctors bad news about themselves, that the pap showed atypical cells and also HPV. I don’t think he would have left me a voicemail message like… Read more »

Bonnie Williams
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Bonnie Williams

Josh, I love your statement that you and your wife are approaching this as a team, as if together we have cancer. What a wonderful thing to give to your wife. If anyone is interested in reading more about how to cope with cancer, I found some great advice on the link below. Hope it may help you.
http://onlineceucredit.com/edu/cancer-hope-can

Mary
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Mary

Hi,

First let me say how difficult this all must be for you and I hope that your journey will end in recovery.

I myself am a cancer survivor and I know the difficulties you are facing.

My best to you.

Andrea
Guest
Andrea

John and Kathy, In 6/10 I received a similar diagnosis. While I undergo the treatment, my husband, in my mind, has suffered more. He has been there in the waiting room, at ITA, and imaging wait area. I got some good advice from my surgeon, Irene Wapnir at Stanford. We started to meet with someone, so much tumult, the prospective premature loss of a partner is hard, especially on the caretakers. Finding the new normal. I wanted all the proper “documents” in place for my peace of mind. So take care John, and Kathy- this is doable, really annoying and… Read more »

jerrys
Guest
jerrys

thank you john & kathy … it is a comfort to know we’re not alone. my wife was diagnosed with invasive ductile carcinoma two weeks ago. a strange thing … even when you know thousands & thousands, more than there ever should be, women are out there with similar dx’s … but when you’re in the middle of “it” you can feel so all alone. fight against isolation … embrace community.
wishing you both strength & hope.

Mike
Guest
Mike

I am so sorry to hear about this! I’m a loyal reader but I hardly ever comment. Our thoughts and prayers are with you in this time of need -we’ll see you on the other side with the survivors and heores that make everyday count. Have you considered getting a PHR for you and your wife? I know you probably run EHRs but I think the PHR would be helpful. We’re using these guys and they’ve made things way easier http://www.zweenahealth.com/signup/zweena-signup-green/ because we’re too tired to scan or transcribe all of it (prescriptions, treatments, tests- you name it!) and they’ve… Read more »

Dr.EMF
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Dr.EMF

I am so sorry for you and your wife’s suffering. Thank you for sharing your story as husband and wife. Very human since storytelling reveals unbiased compassion, provokes deep listening for each of us and is valuable for a health care culture that strives to provide accurate empathy and compassion by building bridges. We are a community and joined through being human. John, you have been instrumental in championing the importance of HIT, I hope that telling your personal story in a public way brings some inner peace and supports your wife on her journey. I am sure that everyone… Read more »

Soursop
Guest

Wow I admire you wanting to document your journey against cancer for the benefit of others. Speaking as someone who has a line of cancer patients in his family I can definitely say that it’s not easy. This is not a call for just proper health care, this is a time when emotions run deep and emotional support for both you and your wife is an inevitable need. I wish you and your family all the best and hope you enjoy your Christmas regardless.

Lynn in SC
Guest
Lynn in SC

Welcome to the role of caregiver. You have more knowledge and lots of information but you like all caregivers caring for a loved one have few answers which is so frustrating. Sometimes the only thing you do is simply be there, so be there. You will learn the very important difference between how we in the US care versus how we seek to cure. They are often worlds apart. For your wife’s sake I’m glad you live in a medical mecca and are well insured believe me it makes a difference but it is no guarantee. As John said you… Read more »

MD as HELL
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MD as HELL

With all due respect, Doctor John, you should not write about this. She may have given consent, but she is still absorbing the impact of this and probably will feel differently as time goes by. This is not an opportunity for you to describe how your carefully assembled team functions and what her scans show. This reaction is your shock and your anger and your denial that this is way more important. She is much more important than a blog. Don’t be stroking a keyboard when she needs your touch a whole lot more. I am very sorry to here… Read more »

Sherri
Guest
Sherri

Sorry to disagree with you Tom. Putting this in a blog is helping others to understand and also providing support. Both my husband and I have found tremendous support by using caringbridge to chronicle his battle. Sorry you don’t agree. Unfortunately just like treatments what’s good for one isn’t always good for the other!

MD as HELL
Guest
MD as HELL

I understand, and I am not here to argue about this. I wish them both well.

John Ballard
Guest

Damn. Just damn. That’s the pits.
I’ve been reading your posts for several years and have a good feeling every time I see that smiling picture. I feel as though a member of my family got the diagnosis.
Tell your wife you have a host of readers who care deeply and wish they could do more than offer prayer and moral support. And that goes for you and the rest or your family as well.

Mark Frisse
Guest

My wife and I send you our thoughts and prayers. We were through almost the same story – in about 1992. We’re looking forward to celebrating her birthday tomorrow! We found that rationality can only take you so far. Tincture of time is the real healer.

We’re “there” for you and yours, John.

Mark & Cathy Frisse

mike
Guest

You both are really very courageous to disclose this publicly. I wish for well being of both of you and hope for a speedy recovery for your wife.

Sherri
Guest
Sherri

First and foremost, I wish you and your wife the best. As the wife of another courageous patient who was just diagnosed with metastatic prostate cancer I know all to well about what you are facing. In response to what Roger wrote, I couldn’t have said it better. It is very very sad that when faced with life and death decisions you have to worry about whether or not someone who knows nothing about the true science will pay for it. On top of that it is different from one company to another. As far as outcomes, forget it…as we… Read more »

Joanna W.
Guest
Joanna W.

I am so sorry about the news. I will keep your wife in my prayers and will follow her progress on the healing journey.