Hi everyone! I have been receiving your posts and wanted to introduce myself. I was diagnosed with B-CLL in January 2013. This is somewhat a lengthy post of my diagnosis but thought it may help others who have had the same frustrations.
It actually began last Sept with an ultrasound for ovarian cysts. The tech seemed very concerned (bought in a supervisor) but wouldn't say what the problem was. Being a nurse, I knew something was not right. I got a copy of the report which said complex ovarian cyst with enlarged lymph nodes in abdomen. (I was thinking ovarian cancer) . I had both ovaries removed (no cancer) by a gynecological oncologist. Had a complication (small bowel obstruction due to herniation at one of the surgical sites) which required a second surgery the next day. Everything was going well however I was still concerned about the enlarged lymph nodes. I was told don't worry it could be anything.
Once I recovered I went to my GP, a wonderful nurse practitioner who obtained copies of the ER CAT scan (which did not mention the lymph nodes). She called the radiologist who re-examined the CAT scan and said, "Oh yes there are enlarged lymph nodes, she should have a repeat CAT scan with dye. I will amend the report." I had that which recommended biopsy.
By this time, I had enlarged neck lymph nodes in my neck. Went back to the surgeon who sent me to hematologist who said we could wait and see what happens or get a biopsy. I chose the biopsy which was positive for B-CLL so I was sent back to the hematologist. Please keep in mind that during all this I am being treated a large hospital in NJ with some of the best MD's. Well I waited for 2 hours to see the hematologist again expecting a full explanation of the findings and the significance of the FISH. I had read about CLL but it was very confusing and I understood very little. He said I had CLL and there was no treatment for now-watch and wait. I wanted more information and told him so. What about ZAP 70 and the FISH results? He said ZAP 70 not reliable and he didn't have the results but I was in the middle of the 3 prognostic groups. (This didn't make sense but I wasn't even sure what FISH was or what questions to ask- I went home angry and frustrated). Back to my nurse practitioner who called and got the results. Positive for 11q deletion and CD38 positive. She did not specialize in this and I had to rely on the internet to obtain all the information.
I am currently seeing a local hematologist, who is also not very forthcoming with information but will answer questions I present to him. I am on watch and wait however have increasingly large lymph nodes in my neck, chest, and abdomen. Due for CAT scan in Dec. All bloodwork has been normal. Had bone marrow biopsy with local hematologist (he uses sedation, yeah!) which was also positive for B-CLL.
Apparently, I believe I actually have small lymphocytic lymphoma (SLL) which made the whole diagnosis more confusing as the doctors I've seen do not call it SLL. I have never been given a stage and they all relate my bloodwork results to a CLL diagnosis and say I'm in the "middle group". From what I have researched, SLL is staged liked lymphoma and I would be stage 4. I understand SLL is now "coded" as CLL because they are different manifestations of the same disease but it would be much more understandable if SLL was not lumped under CLL.
I am shocked at the lack of patient education by the medical field. You have cancer which is incurable but don't worry, we will watch and wait to see what happens! I am sure if they were in this situation they would want information. I realize some patient's may not want to know but there are those of us who do. Not knowing creates more anxiety in me personally. I want information and then I can deal with it.
I hope maybe my story will help others who are feeling the same frustrations in being diagnosed. I have not been tested for some of the newer markers but I am not even sure if they are routinely provided in the US. It's very difficult to have CLL and not have information or support and your website is very much appreciated.
The doctors seem to think it's no big deal just watch and wait. But I was diagnosed at age 50 with an 11q deletion, CD38 positive so it's a poorer prognosis for long term survival. I am quite honestly still coming to terms with the diagnosis.
I was fatigued all spring/summer but in denial. My enlarging lymph nodes which are easily palpable, have recently made me accept this diagnosis and to get involved with support groups where I can find other younger members and information on markers and treatments. I will not have more information on my condition until December but I know that my condition is progressing in CLL with 11q deletion. I am an optimistic person and am hopeful that some of the new therapies will provide a cure. I am having difficulty talking with others about this- I hate attention and especially the awkwardness and sympathy of those who know. So I really appreciate having a place where other understand.
Thank you all and I look forward to being a more active member of your group.