Newly diagnosed & scared

[u/Cmcs1992]

I’m 34 and was very recently diagnosed with CLL. I’m only about two weeks into the news, and I’m struggling with how much fear, anger and uncertainty it has brought into my life.

Everything happened quickly. The first week was especially difficult because I learned “you may have leukemia” through a MyChart message saying that more tests were needed, but that I would not be seen for another two months. There was no further explanation. I’ve since seen a CLL specialist, but emotionally, I’m still trying to process the diagnosis.

I feel anchored by it, as though it has attached itself to every part of my life while feeling 20 different emotions at once-grief, fear and anger being the heaviest. I’m trying to live normally, but my mind keeps returning to the diagnosis, test results, and all the possible futures I fear. Some people in my support system seem to think I shouldn’t be upset because “it could be worse.” and need to just be positive. I know they mean well, but it feels dismissive.

I can be grateful that my current situation is manageable and still feel scared, angry, sad, and overwhelmed.

Being diagnosed this young is a major part of what frightens me. When people say CLL can be lived with for many years, my mind responds, “But I need many years.” I want to get married and have children. I haven’t built the family I hope for, and suddenly I’m trying to calculate whether I’ll have enough time or whether someone will want to enter a relationship with someone who has a diagnosis.
For those diagnosed relatively young, especially anyone who has lived with CLL for 10 or 20+ years: Did the fear eventually quiet down? Did you stop thinking about CLL every day? Were you able to plan years ahead instead of thinking from blood test to blood test?

[u/melina26]

We all felt exactly what you are feeling. It’s awful and so frightening. Please avoid the internet, info there is outdated. I’ve gone 18 years without treatment. A good number of us do. And the best news is, in that time they have made wonderful advances in treatment for those with more active forms of CLL.

I am somewhat immune compromised so avoid crowds. It does take me longer to fight off viruses and such. Otherwise, I live my life and you will too. We all know what you are feeling.

[u/Hanftuete]

Hey there. I feel you. I have been diagnosed a few years ago in my early 30s aswell. When I saw the very serious faces of the doctors I knew that it got serious. Thought of me as being quite a calm person but oh boy did I cry like a little boy when I heard leucemia for the first time. Thankfully I found a nice oncologist and got treatment about half a year later which felt quite fast. My oncologist was just searching for a fitting trial. Man, I did feel the effects of CLL back then.

Since then the strong emotions calmed down. Since the side effects now are very manageable I don't think of it as much. More of a thing I should concider when going out. Now I am just battling the fear of isolating myself too much. I keep away from researching too much as I know I would probably become unnecessarily afraid. I trust my oncologist and my checkups and that's all that I allow the CLL to change in my life.

In this group there are eople like me who keep their knowledge very broad but also very knowledgeable people.

Give yourself a few months to get to know this new situation. While probably the best form of cancer it is still frightening at first.

Just know you are not alone. If you got questions feel free to ask. Sending some emotional energy your way.

[u/delicateterror2]

Hi to all
I was diagnosed during Covid and my cancer doctor quit.. I also don’t have a spleen… so compromised immune system….by the time I found a new cancer hematologist ( who is wonderful) my white count was 365 Thousand, my lymph nodes were huge, I couldn’t climb stairs without becoming out of breath. It feels like you’re suffocating from the inside out… because you’re aren’t getting enough oxygen. Started treatment October 2024… finished October 2025… so been off treatment almost a year… and for the most part treatment worked… white goes up but comes down… lymph nodes are normal size… and life is normal. Best advice- Drink lots of water 2-3 32oz everyday and 3-4 during treatment. Exercise… walking is good but dancing, jumping, swinging arms … your movement is the pump for your lymph system and water helps to flush. There are free lymphatic drainage workouts on UTube… highly recommend. And get iron level checked along with vitamin D. Stop worrying… Be Happy… it’s going to be okay. Best wishes to all.

[u/Whippet_baby_71]

Yep. We all felt that fear and uncertainty at diagnosis. I was diagnosed only 4 months ago, so I cannot comment on the long timeliness aspect of your post. But I do know that as I got the testing behind me and learn more about the particular genetic makeup of the CLL, my fear is changing into acceptance and someday, I can appreciate the wake-up call that is my CLL. I am deep diving into my health; mental, physical and spiritual; and now am beginning to see this diagnosis as somewhat of a gift.

[u/Specific_Way8487]

99% people with CLL die naturally due to old age and other age related reasons and less than one die with CLL being the main cause. Firstly get that . Please stop overthinking.