Thursday, December 22, 2011

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.

83 comments:

Tobit said...

my thoughts and prayers are with you at this time. I hope you are surrounded by love and have access to the best possible options, so that you do indeed enjoy another 30 years.

Anonymous said...

Our prayers are with you : Krishnan / India

IsraLuv said...

My prayers are with all of you. May your wife have a speedy and complete recovery.

Alex S said...

I hope the best for your wife, and that this is merely a small detour in a very long journey you have together.

But this raises a very important point about healthcare in the US: there are 2 types of people - those who have direct access (formal and informal) to care and those who are dependent on the system to provide that access. Would your wife be receiving the same level of care, and care coordination without your professional and personal affiliations? Who would be helping / guiding her through understanding the complex information and difficult choices that need to be made? How do the health systems that you work with facilitate this process?
It's an issue we all have to consider as we evolve care delivery.

Anonymous said...

You and Kathy are in our thoughts and prayers. Wishing you 30 more years of peace and love together. God Bless. Joseph / San Diego

Helen said...

This will be difficult, but you will get through it. My prayers and thoughts are with you and your family.

Anonymous said...

Dear John, who shares so much and gives so much, I'm sad to hear your scary news. My thoughts are with you and your wife, and I'm sending strength your way.

Chris Howe said...

I've been with my wife for just over a year and I cannot imagine what you are going through. I will be prayng for you that God will heal your wife and put you both at peace.

Paul Levy said...

Fond thoughts to you all, John. I'm sending people over from my blog: http://runningahospital.blogspot.com/2011/12/thanks-to-john-and-kathy.html

David said...

John,
My prayers are with you and Kathy for healing/recovery, emotional strength for you both, and wisdom for you and all care providers. Despite such difficult news, it's so commendable of you to chronicle you journey. This is consistent with your passion to share information about healthcare, HIT standards, and your personal experiences, all to benefit others. Thank you.
David

Mark S said...

I'd like to echo the thoughts and prayers expressed here in support of your wife and family through this experience. And I'd like to apologize in advance if any of the subjects raised below seem impersonal, but i think this blog provides much value to the healthcare community as a whole.

I realize it's probably impossible to objectively consider some of the points Alex S raised while you are in the middle of the situation, but I do think he raises important questions for those of us following your blog. Not only does it sounds like what you have done thus far would be completely outside of the "normal" process of care for the average citizen in this country, but one has to wonder, if you two had been living in say England under their system, how would your situation have been handled? And the biggest elephant in the room Alex didn't even mention is the cost...

(this is not a criticism of you in any way; i would fully expect you, or anyone really, to use every skill, abilitiy, position, connection, and dime you have to try and make sure your loved ones are taken care of to the best of their ability. But i do think the sheer uniqueness of your situation due to your specific background, positions, and your public nature help drive home the point that it's one thing to talk about the goal of equal access to quality healthcare for all, reality is a far different animal. To put it simply, no one really wants "average" care when it's now about them...)

Alliance4Health said...

I will lift up you and your family with prayers of support and healing during this challenging time in your life.

As the daughter of a mother who not only survived metastatic breast cancer five years ago and who is now thriving (she just produced her first play last year at age 78) I also pray for hope and the assurance that you will find peace during this journey.

Bob West said...

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

I would not wish this experience on my worst enemy, yet who better in the world to provide documentation of a 21st century approach to BC care than the CIO of BIDMC and one of the original 10 PGP participants? The service you provide in doing this for the global community will never be sufficiently rewarded. All I can do is say "Thank you" for what you've contributed to the healthcare community and what you continue to do for it.

Minor point- curious to know what factor ruled out use of Oncotype DX to decide whether chemotherapy would be necessary.

Mattpenning said...

Sending my prayers and hopes for a long and happy life together. Thank you for sharing the journey in treatment. I will share this with many others so awareness of how important are self exam and early treatment.

Pamela Ressler, MS, RN, HN-BC said...

John and Kathy: Thank you for sharing your journey with others -- it is with such openness that others find hope and courage and shared understanding of the experience of illness. Wishing you both healing, hope and happiness on your journey together.
Pam

Arabinda said...

My prayers are with your family.

Anonymous said...

My thought and prayers are with your wife and you and the family and friends affected by this scary news. Thank you so much for blogging about the experience. It is a great service to those who have and have not been through this.

Anonymous said...

To Mark and Alex's post:
The goal for the healthcare system overall be should that "average care" should be "excellent care" that anyone would be happy to receive.

Also "extraordinary care" (more services) is not synonymous with "good care."

There has to be an average level, but in many ways, the social question is how big are the disparities (what's the spread), and can/should that spread be narrowed? Or should the goal be to just move the average higher.

Anonymous said...

My thoughts and prayers are with you all: I am one of the people for whom you are blogging (having cancer) and I very much appreciate your openness in sharing this part of your experience. Blessings.

Steve Earle said...

My wife and I add our thougts and prayers for your family, and for Kathy's complete recovery after this journey you are beginning together. Peace and blessings.

Sarah @ Be The Weeble said...

John, a friend pointed me here as I've just finished my second round with ER/PR+ breast cancer - twice in 10 years. I've chronicled Cancer Round II (including my double mastectomy with immediate reconstruction) in blog form at Be the Weeble (http://betheweeble.blogspot.com). I too have no risk factors, no genetic history of any cancer and have never had a palpable tumor. Also a Bostonian.

This time of information-gathering and decision-making are by far the hardest, although each stop on the cancer treatment train has its own challenges (and indeed, there are some rewards - I know that might seem implausible right now). I wish you both the very very best.

Sarah Isenberg

Neil R. Kudler, MD said...

Send you hope for healing of body and mind, peace and lovingkindness, as your wife, you and your daughter enter this journey.

Neil

Anonymous said...

As a new healthcare CIO, you've touched my life everyday with wonderful info & insight. I pray, everyone reading this will be your community of support- thru love, prayer and recovery.

Barbara Duck said...

Best thoughts and wishes by all means and prayers for Kathy for a complete recovery-reminder for myself and all women to be aware and not over look self exams. God bless.

Thomas Macpherson said...

My best wishes to you and your wife John. I'm currently in treatment myself, and I know from personal experience you have the best medical community in the world supporting you. Sending you best wishes. Kouun wo inorimasu!

Vicki J. Brown said...

We send all of our best wishes for your wife's speedy and full recovery. Our thoughts and prayers are with you.

Best, Vicki Brown/UpToDate

Anonymous said...

Our prayers are with you all. I know, your family can handle this critical phase of your life, with support from many many well wishers.

Raju, Tampa

Jenny said...

My prayers are with you. I hope your love can support her throughout all these hardship. Best wishes.

Yuhri Hirata said...

I've been following your blog for a while, but never come out of the woodwork until now. If the good wishes and prayers of a complete stranger and quiet fan are worth anything, please pass them on. If anyone can beat this, it's your amazing family. All my hopes for a quick and happy outcome.

Mary D said...

Prayers for your family and a cancer free future.

Jon Mertz said...

Prayers and support are with all of you.

Walter M said...

the main reason why I read your blog is for the additional personal insights - doesn't get more personal than this - best wishes for a positive outcome!

Anonymous said...

My prayers are with you during this time. Peace & many blessings.

James said...

my thoughts have you and your wife in them for a positive recovery. Thank you for the fine example you have set for the community and other care givers. May your actions continue to set into motion many more individual actions to continue to improve this system we call American health care.

Anonymous said...

Our prayers and thoughts to both of you and family. Bit shocked to hear first. Sincerely hope everything works out well for you !

Palani, Seattle

sd said...

As a medical familywhen my
grandma hascaner its was 9 mos
of hard time. Thank you for sharing
your story. I am sorry that you wife is ill.

Bill said...

Kathy and her entire family are and will be in our prayers.

Maureen Bisognano said...

John and Kathy,
I'm with you, as are so many. I'm honored to share your journey and here to help in any way.
Maureen Bisognano

Kavita A said...

I am sorry to hear this. My prayers are with you and your family.

Kavita said...

My prayers are with you and your family.

Leslie Power said...

I'm sorry to hear of Kathy's cancer. My thoughts are with your family.

Knot Telling said...

It was exactly this time of year in 2004 that I began my own journey with cancer in my left breast. It was stage III. I just finished another round of chemo, and I'm feeling okay.

Your post made me cry with recognition and identification. My prayers go with you and your wife as you walk this unfortunately well-tread road together.

Anonymous said...

Only the best of luck and care to you family...

Brian Ahier said...

John, we are praying for you and your family. Hopefully the outpouring of love rippling across the Internet will bring Kathy some comfort. There is a lot of positive energy headed her way...

Ben Toth said...

Dear Jon

So sorry to hear this. I've been affected in the same way as you and though we're through it now I remember spending the first few months in shock. Good luck to you all.

Suleman Bhana, MD said...

John,

My thoughts and prayers go out to your wife, yourself, and your family during this time.

Suleman Bhana, MD
Rheumatologist, NJ

Jay Effe said...

Dear John, I pray for your wife's full recovery. May you both have the strength to endure and overcome this difficult challenge.
Season's greetings to you and may we be here in a year's time celebrating life.

GanguliR said...

Dear John, Your family will be in our thoughts. Best wishes, as you, your wife, and daughter embark on this journey.
Rohan (Toronto/Pittsburgh)

Nathan said...

Your writing, work and family are an ongoing inspiration to me both on a professional and a personal level - thank you for sharing.

Although one can never be prepared for something like this, your obvious love, thoughtfulness and togetherness as a family gives you the strongest possible foundation to start from.

My thoughts are with you and your family through this difficult time.

mjadala said...

Dr. Halamka,
Our thoughts and prayers are with you. Wish you the very best of luck in this difficult time!

Paul Hamnett said...

Our thoughts are with you. Thanks for all you do for healthcare, may it give you strength at this time.

Katie McGraw said...

So sorry to hear this news. My thoughts are with you and your family, stay strong.

Margaret Polaneczky, MD (aka TBTAM) said...

Best wishes to your wife for a successful treatment and a full and speedy recovery. She is blessed with wonderful medical care and the loving support of you and your family. I will tell you what I tell my patients - many , many of whom have been through what your wife is going through -she will do well. Best to you and your family.

Justin Wiley said...

Very sorry to hear this, best wishes to you and your wife.

Ankur Seth said...

John and Kathy: I pray for the speedy recovery and am sure with the advance technology present you will be soon on the path of recovery. Best Regards and wishes

San Diego Guy said...

My thoughts, hopes, and prayers are with you. You have done so much to help our healthcare system, may it now return the favor and restore you to a long, happy life together.

CT Lin said...

Breast cancer found. Your
virtual community
shocked. We support you.

leonjeru said...

Praying for your family ! Good health and long life to your wife

ericfine50 said...

Our thoughts and prayers are with you and your family. May your wife have a speedy recovery and treatment be successful.

Alison said...

Hi so sorry to hear your news. This is so strange i found out the same time i had Breast Cancer. I'm stage 3 and it's the same side.

Good luck, lets hope we both get through this as quickly as possibe.

Alison
age 43

Anonymous said...

I am praying for you and your family.

e-Older American said...

Dear John,

I wish the best for you and your wife: the "we" who have cancer.

My wife and I soon will be married 50 years. As older-Americans, we are among those fortunate to have access to a level of health care and coordination, similar to that of you and your wife, paid through Medicare.

I participate on various Standards and Interoperability (S&I) Transitions of Care (TOC) workgroups as a patient/consumer and on the HL7 Personal Health Records (PHR) work group in the same capacity. Continuity of care is not just a document for us but is a life process.

We are lucky to live in a village located just outside Madison, Wisconsin and have ready access to the University of Wisconsin (UW) Carbone Cancer Center. Continuity of care for us involves not only active treatment but coordinated palliative and end-of-life care through Agrace HospiceCare in Madison. Hospice care is also paid through Medicare.

Our wish is that there would be Medicare-for-All coupled with adequate reimbursement to the medical community. It was only through a last minute action yesterday (December 23rd) that the current inadequate reimbursement rates weren't cut even further.

Sincerely,
Fred

e-Patient Dave said...

We too are with you both.

I like the we. When my wife became pregnant long ago people snickered when I said "We're pregnant," but I know just what you mean.

Good time to remember BIDMC colleague Jerome Groopman's words in Anatomy of Hope - "There is an authentic biology of hope." Good ally, along with the rest of science. May your outcome be *better* than mine.

Anonymous said...

I wish your wife, you and your entire family all the best. And I thank you for sharing your experiences in your blog. Cancer touches so many families. I hope we all can learn from your experience and work together to raise awareness and improve outcomes. Here's to another 30 years for you and Kathy.

Sheetal said...

Thoughts and prayers from my family to yours.

Anonymous said...

Our prayers are with you and your family. We pray she has a speedy recovery.

Unknown said...

Best wishes you are armed with information and love - the best medicine?

inkgrrl said...

Love, strength, and healing to you both.

Anonymous said...

I had the chance to hear you speak over the summer at a student leadership conference in Cambridge. I never had a chance to thank you for your talk. You and your wife are in my thoughts and prayers.

Niranjan Sharma said...

Dr. John. My prayers are with you and may Your family gets strength to deal with it.

One thing I am confident after following your blog is that you will make it a experience for everybody to learn and be benefited. You always seek an opportunity to serve...

Very admiring.

Dirk Stanley, MD, MPH said...

My sincerest wishes and positive energy for a speedy recovery so that you can spend the next 30 years together...

Carey Goldberg said...

Rooting for you guys with every pom-pom, John, and hoping that the writing process is therapeutic and that we all get to rejoice at the happy ending...

Alex I said...

I wish for your wife to have a speedy recovery. I can not put in words how shocked i was when i read your post. My prayers are with you and your family.

jason smith said...

Will keep your wife in our prayers!

Elaine said...

Sending you all prayers and thoughts of hope, support and encouragement as you go through treatment and care. Thank you for sharing your experiences as I have no doubt we'll be wiser and more informed as patients and individuals as the result of John's writings.

Lissa Kapust said...

Bravo on the blog and my sadness about the circumstances leading to it. I am a 30 year BIDMC employee and 3 time BC survivor. Over the years my BIDMC team has managed each new health crisis and the worries in between. There are no VIP's in the waiting room on the oncology service. Each one of us waits for our name to be called feeling a mix of bone soaking fear and hope. My wish for you and your wife is that next holiday season is one where you can focus again on festivities rather than critical treatment decisions. Thinking back to my initial diagnosis almost
three decades ago, I know how important it was to talk to women who had also been treated for BC and were doing well, living life fully and looking towards the future. I look forward to reading your blog and my thoughts are with your family.

Anonymous said...

My thought and prayers will be with you and your family as I follow your journey. The best we can do is love them and help them with their fears. A friend told me this when I feared I couldn't do enough for my sister when our family first learned of her stage 4 cancer.

My advise to her early on was: we are fortunate to have an excellent hospital and doctors a half hour from home. Once the team is selected, you need to put your faith and trust in them as many will offer their ideas and thoughts.

It is a hateful disease. Use any and all resources you have. As a doctor this may actually be more balanced and reasonable than the average cancer patient without your expertise.

Trust your gut and protect your loved ones. Go easy on yourself and try to sleep. You will find strength, not because you are strong, but because you have no other choice. Baby steps with lots of big breathes.

My heart goes out to you. Breast cancer is very treatable and I hope and pray for her recovery and healing.

adena said...

I am a breast cancer survivor, and I was also treated at BIDMC. Dr. Houlihan was my surgeon as well. I guess what I want to express, as your begin this journey, is that it gets easier as you learn more and more about your particular cancer, and what treatments your wife (and you) will have to ensure. The beginning is the hardest. There may be some decision points along the way, and some of the decisions aren't easy. One resource that was helpful for me was breastcancer.org. When you are ready to be angry, you may want to join us at the Mass. Breast Cancer Coalition mbcc.org to help find out why 1 in 8 women gets breast cancer in the first place. Good luck to you.

Anonymous said...

God bless you both! I went through a very similar process almost a year ago. But, I had a great team of healthcare professionals helping me and I am mostly feeling fine now.
You both will reach this point too!
all the best,
C

Anonymous said...

Thoughts and prayers with all of you.

Signed, a cancer survivor (8 years)

Unknown said...

My Prayers to you and your family Dr.
May god give all the energy that you all need at this time.

Wishing you all the best for the next 30 years of journey with her..

Madhu Venkat said...

Our prayers are with all of you : Madhu/ India

Ravi Kumar said...

John & Kathy: Our prayers are with you for a speedy recovery and return to normalcy.