Newly diagnosed CLL

Hi all! Decided to get a physical when I turned 60 in July and I was diagnosed with stage 0-1 CLL. Will be getting results of genetic tests next week. No symptoms but doc believes I've had for almost 2 years (had elevated WBC count during emergency room visit). So scared at first but I've gotten so much info online and reading other patients journeys has helped me put this disease into perspective. I have 2 adult girls ages 27 and 30 ( one is getting married in a few months) and I just can't tell them. Thinking I should wait until I need treatment but I'm so undecided. Maybe someone can share how they told their children?

Also anyone with CLL in Milwaukee area? I really appreciate the support this provides.



7 Replies

  • Once you've taken a breath, tell them. No one wants cancer, but this is one "of the better " ones. Our prognosis overall is encouraging, and the medical breakthroughs are astounding. Evidently, you have no symptoms. Sheltering your children won't serve anyone in the long term.

  • Thanks for the response. Since I feel well and an symptom free it's almost hard to accept the reality. Hoping for good news on genetic test results this week.

  • So sorry to hear of your diagnosis. I'm glad you found this support group and I am sure you'll find a lot of answers to your concerns and fears here

    I was recently diagnosed this year as well and have a 23 and 25 year old, both girls. I chose to wait until all my tests were back and I knew what the markers meant. It took awhile and only my husband and a few friends that are my prayer warriors knew

    When all the information about markets were in and the Dr told me that this was very slow growing I broke the news to my girls. My youngest was sad and concerned but was surprised at my calm and was able to take a deep breath. My oldest was very upset I didn't tell her right away but was grateful for the diagnosis not being aggressive.

    Neither ask a lot of questions or show concern for the most part because I have no symptoms or am I in need of treatment.

    I am thankful for each day I wake and for this time I have in "wait and watch" to live the best life I can and as healthy as I can.

    I am glad I shared the news with my girls once all my ducks were in a row and I know that when and if I need treatment they and my husband will be my biggest support!!!

  • Thanks so much for sharing your story. Hopefully will get good news on tests this week. !!

  • Here's an educational and hope inspiring video I think you'll enjoy, "Not Your Father's CLL".

  • Patti, I am in the same boat & also looking for others dealing with this. I also waited to talked to my family members. I wanted to tell them with the a sense of positivity and confidence without the panic I felt at first. I also needed to be able to talk about it without crying which took a couple of months. But they responded to the (+) way I presented it.

    I was diagnosed on my 58th birthday (not kidding) after routine blood work. I didn't have the FISH (prognostic) test, because I'm stage 0 and it won't inform treatment - since there isn't any at this stage. Plus I'm afraid it would be bad news and that would make the heavy psychological burden, that I already feel, even worse.

    I wonder how others deal with the threat of your health going anyway at any time? I feel like the fish swimming along in life and then realizes that she is living in a blender. Do others have this chronic anxiety "fish in a blender effect" ? If so how do you deal with it?

  • Carol,

    Thanks for the response. Since so few people know about my CLL, I think this blog is so important for us to sort it all out. My first couple of weeks were the worst. I was preparing for a trip to Italy with my daughters and a friend and I didn't want it to be the trip where the girls discovered mom had cancer. But the trip taught me to live my life and enjoy it all. None of us know how long we have left. Heart disease runs in my family (absolutely no one has history of cancer of blood or otherwise). Just as likely I can have a fatal heart attack as die from CLL.

    I saw hematologist/oncologist a week before my trip and she noticed I had blood drawn on an ER visit 2 years ago. WBC was 13. It is 15 now. That made me feel better. SLOW disease. Just got FISH results. All negative for markers right now. She told me to tell the girls and I plan to do that soon. She told me she has patients that do not ever need treatment. Some after 15 years.

    So I have picked myself up from the depths and am looking forward to weddings and grandchildren. I will be happy with 10 more years if that's all I've got. In the meantime I have started to exercise more. I have tried to live a low carb lifestyle for the past couple years so lots of veggies and green smoothies. Also vigilant about taking my D3 and green tea supplement. And I keep busy. Maybe will retire at 62 though not my original plan. My husband and I want to see some of the US while we are still healthy.

    About the chronic anxiety. Seems like late at night I google some CLL site and try to read positive info to keep me sleeping at night. But still can't talk out loud about it without crying. And I rub my neck a lot to check for swollen lymph nodes. Lol! But hasn't been 2 months yet since diagnosed. I'll give myself a pass on that. And tears are ok.

    Keep in touch, always here to listen.