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DiscussionAnyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Dec 16 12:28pm | Replies (81)Comment receiving replies
Replies to "Pixiesusan, so good to hear back from you. My first bone biopsy in Oct. of 21..."
We certainly are on a journey, and I have realized how little I know about what is going on with my health. I honestly don't think that's the fault of my doctor; in the beginning, I didn't have any genetic changes, and I was 100% wait-and-see. I believe they detected the first change in 2022, but I skipped 2 years prior to that due to COVID (my choice, but it doesn't change anything). When I went in 2022, I discovered a problem with my TP53 gene via a blood test at Dana Farber. And even then, no one said MDS or cancer; it was just, "We will continue to get frequent blood work and see." I get my blood work locally, so it's not any genetic testing; it's just CBC, keeping an eye on my platelets. As I said before, my platelets are drifting down. I'm still CCUS and not MDS, so far. It doesn't seem like there are many of us around. I am on a Facebook group for MDS, but many of the comments in that group go way over my head. I need to learn more about this; however, since I'm a world-class worrier, I'm not sure that's good for me. 😉 But it's what it is, and I think knowing is better than not knowing. I hope you are feeling okay right now. I'll send you some good zen.
PS I know I answer these quickly like I'm waiting, but I work online, so I see the emails when they come in!