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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21 replies »

  1. 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 that had I not been a physician. Instead, it would have been an innocuous message to call his office to review the test results. As it was, he actually left the specific message and I was left to wait from Friday evening until Monday morning before I could call his office back. It was the longest weekend of my life.

    I have given a diagnosis of cancer to enough people over the years, that I felt pretty comfortable it was something that happened to other people and not me. It was jarring to suddenly find me as part of ‘them’.

    Added to that was shame of having an STD. This was the worst combination – something that was a disease with moral implications as well as the terror of possible cancer. I couldn’t talk with any of my professional colleagues as I would have with a pure cancer diagnosis, and I racked myself with a debate over whether or not I had been a good person. I had never felt that I was irresponsible or immoral, and this suddenly threw the flood gates open to a whole series of questions I had never before dealt with.

    I suddenly became like everyone else. Just a person, who was scared that they would suffer pain or die. I researched everything, on the internet, in my old medical books. I read articles in the popular press, on Mayo’s website, and by lay people writing blogs to help other lay people make sense of the alternatives of care and what all the information meant. I read about conventional and alternative therapies. I cried and I prayed. It was overwhelming.

    I eventually had biopsies done which showed inflammation but no obvious cancer. For now. It meant I would still need to get checked regularly and that the hpv would likely linger for several years, assuming it didn’t transform to cancer before then.

    I had read articles in the past about non-medical people telling their stories so that others would be helped. I had never understood what that was about. Until the moment when I was desperate, and then I suddenly started looking for information and hope from every source I could get.

    I had read about celebrities, like Guiliani Rancic or Christina Applegate, who chose to have prophylactic mastectomies, and I always wondered if they really needed it. Now I understand. Just like them, I want to live and to live as well as I can.

    I appreciate the commenter who said that your time is best spent with your wife and in supporting her, but I think that by sharing your story, there is a community that you create with others who have suffered who you can support and be supported by.

    I wish you and your wife the very best.

  2. 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

  3. 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.

  4. 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 totally inconvenient. The column has another benefit for those who love you both, you can share information in a way, that provides information without the awkward. “how are you?”

    Andrea

  5. 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.

  6. 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 been kind and understanding.

    Stay strong, I know the hardest is yet to come but we’re here for you man.

  7. 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 in the health care community wishes her well, and recognizes that your love and loving kindness as a husband comes through your written words.

    My support and prayers are with both of you as you enter 2012 and make decisions together.

    E

  8. 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.

  9. 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 will learn so much about how dysfunctional our health care system truly is. It is perfectly normal to want to shoot your insurance company’s representative once you reach them through the telephone tree. (It is useless, however, insurance reps are like zombies they just keep appearing at every turn.)
    It’s an awful journey may your wife arrive safely on the other side where ever that may be.

  10. 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!

  11. 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 of your battle with this all-too-common disease. She and her illness are not subject matter.

    Give her a break. Give yourself a break.

    When my wife had Non-Hodgekins Lymphoma I was a wreck at first. I had scary thoughts and I actually could feel myself pulling back from the situation, preparing to be without her. That did not happen, thank God. Eight years later she is fine.

    Stay focused on her.

    I hope I did not startle you.

    Tom K

  12. 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.

  13. 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

  14. 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.

  15. 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 have been told sometimes you have to put your medical background ( I’m a nurse and my husband a PhD and medical executive) away and go by gestault too. The latest and best treatment that has the best outcomes we were offered is two fold. One costs $150,000 and now will hopefully be covered in conjunction with another that isn’t covered that if we choose will cost us $5400 per month. Outcomes show it is better but insurance says no it is too early…I’d say he is worth the money. Good luck and we will be thinking of your family too.

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

  17. You are about to experience, first hand, the real problems of our health care system. “You” assembled a team. The coordination will be difficult. The costs will be unknown. Until we have transparency on costs and treatments with end to end coordinated care for an outcome, the complexities and costs of our health care (single payer or individual payer) will not change. As someone that has battled cancer several times and has had to deal with the medical community, the provider network, the insurance companies, the coordination of care, the unknown costs, I can assure you that it is what drives the real costs. I am quite sure that your wife’s cancer is not unique and there is no reason why we shouldn’t know the treatment plan and costs up front. Obviously there could be circumstances that change along the way. In an ideal world we should be able to compare doctors, costs and treatments with outcomes. We can do that for just about everything else in our society, but for some reason we have excluded the medical community.

  18. Thank you for posting and sharing what I know to be an emotional time in your lives. I will share your blog with others. You have words and an understanding that are important for women and their families. Bless you both.

  19. This is very courageous of your wife, John, to agree to publiclly document this process in an attempt to help others.

  20. Nooooo!!! I am so very sorry to hear this. As a pathologist, your description resonated with me. Will be following your progress with both concern and hope.

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