Getting the Diagnosis: All You Hear is "Cancer"

Cheryl Greene is the Co-founder and Executive Producer of DrGreene.com. She is on the Board of Directors of the Society for Participatory Medicine and X2HN (Women Healthcare Executives Network). Her Facebook profile says it all -- Wife, partner, mother, lover of life.

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and sucking, and I did a great job of producing "liquid gold". Then I developed a breast infection. Many nursing women have them -  painful, but no big deal.  I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, "Ok, you can get up now," and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you're nursing. 


Cheryl nursing Austin the night before her diagnosis. 
Her cancer was in her right breast

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, "YOU HAVE TO STOP NURSING." I didn't listen to the details about how serious this cancer was.

When you're diagnosed with something that's really devastating, there's only so much you can hear. For me it was that I couldn't breastfeed any more. All I could think of was, "How will I feed my baby?"

A couple of months later, I sat in my oncologist's office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, "YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR."   That's all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors' offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need. 

I'm now on the board of a non-profit organization, the Society for Participatory Medicine. It's really a movement that encourages people to be part of their own healthcare team and encourages healthcare professionals to treat patients and their families as part of the team. I was very lucky to get to that place in my treatment. Tomorrow I'll talk about that, but first, please share your story... have you ever been on the receiving end of this type of bad news? How did you process the information you were given? Have you ever helped anyone through a similar situation? What tips can you give to help others in your shoes?

Tomorrow's Post... Getting Treatment: How I Became an e-Patient

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October 13, 2009
Note: This Perspectives Blog post is written by a Guest Blogger of DrGreene.com and is provided in order to offer a variety of thoughtful points of view. The opinions expressed on this Perspectives Blog post do not reflect the opinions of Dr. Greene or DrGreene.com. As such, Dr. Greene and DrGreene.com are not responsible for the accuracy of the information supplied. This post is used under Creative Commons License CC BY-ND 3.0.
 
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Comments

Anonymous's picture

Heather -- "It's just so much

Heather -- "It's just so much harder when it's you" is really important to grasp. I'm sorry you're going through this, but you're gaining empathy you couldn't get any other way. It really is different when it's you! Doctors and nurses who have personally gone through a health crisis -- who have been patients themselves -- have different tools. I know you will use yours well. C~
Anonymous's picture

Sorry to serial post, but I

Sorry to serial post, but I just realized that one of my favorite parts of working with patients is helping them learn how to talk with their doctors, ask for things they want, ask the hard questions that are going to get them information. I need a me.
Anonymous's picture

What I want is a not

What I want is a not distracted me. More than just listening I want someone there to think of the smart questions I'm too distracted to think about. I could do it on the spot for the kids, I do it for patients all the time, it's just so much harder when it's you. Guess I'll get lots of practice with my upcoming docathon.
Anonymous's picture

Heather -- I can't imagine

Heather -- I can't imagine what you're going through right now. How hard. I know you know how important it is to have a support person at appointments. I'm sorry there is no one close enough to you to provide that care. Have you tried a tape recorder? One other thing that I found very helpful for me -- I wanted to know as much as I could about the next thing that I was facing, but I didn't want to know everything about what I had to face after that. I had enough strength to get through "this one". And then when I was through with that, I could go on and face the next one. Something that also really helped me was focusing on something really positive that I could look forward to in the future -- a holiday with family, a trip, and milestone for one of the kids, a day to take photos in the park ... just something that I could look forward to with hope and positive anticipation. I still try to keep my list of things I'm excited about in the future and it still helps me get through difficult days. We're pulling for you! C~
Anonymous's picture

Cheryl, my Mom would do that

Cheryl, my Mom would do that because I'd almost always ask questions she didn't know the answer to. Not for "big" appointments, but everything. She had a little recorder that she carried around in her purse for a long time. It worked well for her. ~Heather
Anonymous's picture

Amy -- WOW! I had no idea.

Amy -- WOW! I had no idea. That is so tough and I'm glad they are both with you today. Most people who are fairly healthy think they can handle going to the doctor on their own -- even if they're in the middle of something like cancer treatment. They don't think that they need someone to be their advocate if they can drive themselves to the appointment. I think it's absolutely critical! So glad your husband and father had that person or people in their lives. C~
Anonymous's picture

Beth -- We didn't do this,

Beth -- We didn't do this, but it sure makes sense to make a recording of important conversations to play back later and to let family hear "exactly what the doctor said". Has anyone tried that? How did it work out? C~
Anonymous's picture

Different diagnosis,

Different diagnosis, different story but oh how I can relate. When I sat in the neurologist's office learning about my seizures I hyperfocused on hearing "when these progress" thinking that it would be better to say "if these progress" By the time I was able to move past semantics I was hit with not driving. I have a list of questions for when I go back this month, things I'm sure he covered but that I wasn't hearing. I'd love to have a support person to go and hear all the things that I'm tuning out but I don't right now, and it has cemented my belief that ongoing education for patients with chronic conditions is vital especially during those weeks that have what I've began to call "docathons" when you bounce from one office to another to another. ~Heather
Anonymous's picture

My husband and father both

My husband and father both had life threatening illnesses within the past 18 months. Both required open heart surgery - several hours worth. You MUST have an advocate or buddy. I am certain neither would be alive today if it hadn't been for us even though we had good doctors. What great advice to tell patients an essential item in their fight is someone to come along to all appointments.
Anonymous's picture

Cheryl, This is such an

Cheryl, This is such an important point. When Mom got her diagnosis, Papa was with her. Even the two of them together were stuck on the word CANCER. My sister and I pumped them for information. "What kind of cells? What stage? What size? Where has it metastasized? What can we DO?" And all my parents could say is, "I don't remember the details." It was a blow to both of them, a surprise, a shock. In later visits, we were able to talk to the doctors more clinically. Papa knew we were going to be grilling him about the details, and he tried to share more information. We learned as we went, but it would have cut down on the stress if we had known what we do now about *how* to listen to this type of information. Thank you for sharing your experience. If your readers have to go through such a horrible conversation, let's hope they are forewarned.