Ugh! A Diagnosis. Now, What?
Feb 2 2011 in Denise's Blog, Your Tips by Denise
G-J’s news last night got me thinking.
About six years ago, my dad was diagnosed with bladder cancer. We knew something was wrong prior to the diagnosis. He and my mom returned home early from a vacation because of blood in my dad’s urine. My dad loves to travel and loves to vacation. But, he was desperate to get home. That’s when we knew he knew something was really wrong.
My dad had tests. Then he had an appointment to learn the results of the test. I went with my folks to the appointment to hear the news. I took notes and asked questions. I just let my parents hear the news.
When we arrived home, my mom made the calls to my siblings. I’ll always remember how she pulled up the stool to the phone, pulled out the phone book and dialed. I offered to make the calls, but she said she was okay.
It’s not a holiday, Diagnosis Day, but it’s a day that’s so momentous for all the wrong reasons that it becomes etched in our memories. The world looks the same but a diagnosis changes how the world feels. It all feels so strange.
So, in thinking about G-J today, I’ve been thinking about what to do after you hear a diagnosis. My suggestions follow; please share yours in our comments section below.
1. Believe the diagnosis gives you time. You have time to research, plan, communicate. You have time to get a second opinion; you have time to research the disease, its progression and treatment options. You have time to talk with your caree, other family members and friends. You have time to make the most of the time you have.
2. Know denial about the diagnosis will steal your time. You may be tempted to disbelieve a diagnosis, to hide it. Denial, not the diagnosis, is the true enemy. In denial, you deny yourself the chance to learn, prepare, plan and understand. The progression of a disease will arrive on time; denial will make you late for its arrival. Playing catch-up after its arrival will waste precious time. And, before you know it, there won’t be enough time. Don’t let denial take your time.
3. Consider how well you and your caree respect and like your caree’s health care professionals. The right physician and care team can make a huge difference. If you feel disconnect during the discussion about the diagnosis, consider getting another opinion and finding another physician.
4. Talk about the diagnosis with your caree (if appropriate). Then, let your caree talk about the diagnosis with his or her own support system. Do the same for yourself; call a friend or a family member to talk about how it feels. And, talking about it with someone will help keep you from denial.
5. When you talk about the diagnosis with your caree, talk about your priorities. What’s a priority for your caree? The most aggressive treatment? The best quality of life? Time with family? Time traveling? How do these priorities align with yours? How can you make the priorities a reality?
6. Let the news sink in. You’ve had a shock, no matter how expected the diagnosis. The news is shocking. You will feel different. Allow yourself to get used to your new skin, so to speak.
7. Start a journal to document how you feel and what this feels like. Even if you think you won’t like journaling, you will like going to a place (your journal) where you get to let it all out. When it comes out, it somehow sorts itself out.
8. Contact organizations, like disease-specific agencies, that can provide information. Gather information and look for online communities that can provide help and support.
9. Take deep breaths. Sounds so simple but when news takes the wind out of you, breathing seems to be the last thing we remember to do. Take deep breaths.
10. Get out of the house. Take a walk, pick up take-out for dinner, stop at a friend’s, go to the library. A change of scenery and the motion it takes to get there will help.
Now it’s your turn. What are your suggestions on what to do after you hear a diagnosis?
Resources
- Our next free webinar, “Surviving Caregiving: The Power of Acceptance,” is Wednesday, February 16, at 11 a.m. CT (Noon ET, 9 a.m. PT). Be sure to mark your calendars. To attend this webinar, please visit http://InstantTeleseminar.com/?eventID=17505084.
- This week’s issue of Caregiving Deals is out! Check out the deals (including a great deal on coaching with me). You can view it here. And, subscribe to our newsletters here.
Related Articles
- This Week’s Poll: Who Would You Tell? (caregiving.com)
- The Shifting Gears of Grief (caregiving.com)
- The Dominoes of Caregiving: Those Changes (caregiving.com)


Trish said on February 2, 2011
Denise, I couldn’t agree with your list more. Twelve years ago my mom was diagnosed with cancer in the liver (they never figured out the origin but it had metastized to the liver) and the short amount of time we had from Diagnosis Day to the day she died was shocking. Two & 1/2 months. Our motto became “there’s no time like the present” and we did everything she wanted to do: go to the beach with the extended family, take a family photo to name a couple. I hadn’t thought of the diagnosis as “giving us time” but your perspective is spot on. It did give us time to do the things she had just been thinking about, wanting to do at some vague point in the future. There’s truly no time like the present. Your suggestions after diagnosis are excellent. Thank you for posting them. Trish
The Style Crone said on February 2, 2011
My husband was diagnosed with cancer of unknown primary almost six years ago, was told there was no hope and was offered palliative chemo only. We found a cancer guide and Nelson was evaluated by an expert on his disease. He was also seen by an integrative oncologist. He is alive today! I firmly believe in second opinions, especially if the disease is rare.
Bette said on February 9, 2011
My mother went for a CAT scan today. Within 2 hours our family doctor called. The scan showed that there is a very strong chance of Normal Pressure Hydrocephalus. I read a bit about it this afternoon and it is additional fluid in the ventricles of the brain. It could account for some of the behaviors we’ve been seeing.
The doctor gave a couple of options: a visit to a neurologist, or an MRI. She has a strong feeling that this is what is occurring and wanted me to consider surgery as an option. They would put a shunt in to drain the excess fluid.
So, instead of getting ahead of myself, I asked for the MRI first to see if it gave a clearer picture. So…one step at a time. I don’t think my mother could withstand a surgery, but I’m willing to talk about it with them.
After our Joy Class today, I know I need to involve additional help from another Health Care Agency. I need more help and more people that can help with transports. I’m hoping it’s okay to involve two different Health Care Agencies with her care. Tomorrow I will begin calling.(:
Kathy said on February 9, 2011
Bette,
After an MRI with Hubby, his Neurologist suggested the possibility of NPH also.
I almost wanted it to be true.
One suggestion they offered was a spinal tape for 3 days to see if there was ANY change in Hubby’s gait and confusion.
My understanding of it after talking with the Dr and doing my own research was IF it was NPH the difference after the spinal tap would be IMMEDIATE like darkness to daylight.
Unfortunately, NPH was ruled out for Hubby.
Did your mother’s Drs suggest a spinal tap before any surgery? I would at least ask about it.
Denise said on February 9, 2011
Hi Bette–Good for you for being so proactive! Here’s some additional information about hydrocephalus: http://www.caregiving.com/2009/02/it-looks-like-alzheimers-but-its-not/
And, you should be okay to use two different agencies. Keep us posted!
G-J said on February 9, 2011
I don’t know a lot about NPH, but the woman who is the executive director of Alzheimer’s Family Services and was the moderator for the panel discussion I was on last year said that NPH is over diagnosed. Just something to keep in the back of your mind.
Bette said on February 9, 2011
Thank you for your wisdom with this.
The doctor did suggest a spinal tap, thanks for mentioning that Kathy.
I’ll post an update after the MRI, but I’m not sure that will give them enough info. either.