Surveillance CT Scan for My Chronic Lymphocytic Leukemia (CLL) Had an UnExpected Result
The 5/11/22 CT Scan(got results the next day) confirmed my CLL is coming out of remission but that no treatment required at current time. Unfortunately the scan offered the following surprise:
“0.9 cm area of nodular thickening/nodularity along the left lateral bladder wall for which a urothelial lesion such as a transitional cell carcinoma is difficult to exclude. Consider CT IVP for further evaluation versus cystoscopy”
I sent the scan report to my PCP and she has referred me to a urologist. I got the referral too late today so I’ll call to make an appointment on Monday.
I have a few questions for the “experts” here. By the way, I don’t smoke and have none of the symptoms typically associated with bladder cancer. I pee like the 69 year old man I am, but nothing painful, bloody, or overly frequent.
So, if it ends up being transitional cell (urothelial) bladder cancer, is .9 cm consider small or large as far as a tumor, and does that size say anything else about the nature of the cancer such as is it early stage or later stage, has it invaded beyond the initial layer of the bladder lining. Also do situations like this end up not being cancer? From what I have read, benign bladder polyps are rare.
Since I’m already a chronic leukemia patient, I’m not freaking out about the possibility of another cancer, but I am kind of angry about it.
Any info you can provide would be appreciated.
hi. I no am not medically trained so can’t comment specifically In tumor size etc. Your urologist should be able to answer these questions. Meanwhile this may be useful to understand the basics. Wishing you well and please let us know how you get on. Laura, Moderator, BladderCancer.net 
@kcm1953 - I am not a medical professional and cannot provide medical advice. Your urologist may suggest a cystoscopy test which would provide more information and then possibly a TURBT. A TURBT would provide the stage and grade information if it is in fact cancer. Though I am sure this is a difficult time as you want answers now, try not go to the worst case or focus on what it may be until you have answers. I frequently say that the internet is a great place to obtain information, but sometimes too much and not always accurate. My hope is that you are able to get into a urologist very soon and have answers. If they do not have an appointment very soon, a suggestions is to put your name on the list to fill in if someone cancels. I understand your anger as we have all been there. When you have more information from a medical professional, we can support you through that should it even be cancer. I wish I could provide you with answers but I believe that your PC sending to you a urologist immediately is the best plan. Please keep us updated on what you find out. Sending hugs and prayers your way. My very best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
Today I had my initial cystoscopy. Sure enough there was a 20 mm (2cm) papillary tumor. Physicians office will contact me Monday to schedule TURBT. While we need to do the surgery to confirm malignancy, staging, and resulting next steps, based on the expression on my doctor’s face when he first saw tumor, there is little doubt it is cancer. Hoping it’s low grade and non muscle invasive, but whatever it is I’ll deal with it. I feel good about my physician team as I am being cared for at the Stanford University Urologic Oncology Clinic, and my urologist/oncologist has a good manner about him and has extremely impressive credentials.
The journey begins.@kcm1953 - Sounds like you are in very good hands for whatever you find out. I am happy that your doctors seem to be moving things along quickly so you both can have answers and then come up with a treatment plan if needed. Sending prayers that it is low grade and contained. Please keep us updated and know that we are here to support you through anything that arises. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
@kcm1953 - The waiting for specific stage and grade can be difficult but if you are like me, you just want to know who you are dealing with and what the treatment options are. Sending prayers that you have low grade form if cancer. Please keep us updated so we can support you through this. My best. Linda Urbanski ( moderator, Bladdercancer.net team member)
@kcm thank you for sharing your story. My Mom had a similar track with disease. She fought lymphoma which morphed time and again and went into remission in 2012. There were frequently nodules / tumors of lymphoma popping up all over her body- including lungs and kidneys. But as you know, lymphoma/leukemia are not traditional cancer, as watching and waiting is a viable treatment option. This is not the case with other cancers. My Mom was also a patient at Stanford, but unfortunately her bladder cancer occurred at the start of the pandemic and she received sub-par care at best. Sending prayers that this tumor may be related to the leukemia somehow and not a new bladder malignancy! Keep us posted and we'll keep the prayers coming!
Charles (Moderator / BladderCancer.net)
