Today I met with my Hematologist/oncologist after he ordered me a pet/ct scan. I was hesitant to take the test because I didn't think it was CLL protocol but I complied. He said the scans all came back normal and staged me at 0. I was told I had the 13 deletion and a good prognosis. I was going to see a CLL specialist at the end of the month but I am now debating if I should wait on that since there is not much to do at this stage but to watch and wait.
One concern I had was the Dr said he would see me every 3 months for blood work and every 6 months run the more extensive blood work to make sure nothing has changed in my markers. Seemed reasonable to me except he said the flow tests would only be for him to evaluate and not for me to see. That seems like a red flag to me. Why wouldn't I be able to have access to my own blood work?
Thank you so much for all the input I have had so far and giving me a forum to gain some insight on this very new diagnosis.
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Adante
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Your haematologist/oncologist seems to be assessing your status well. While you are right about there being no need for your scan, it's good to have that done for a baseline reference and to eliminate any concerns about large internal nodes.
In the US, you have the right to your medical test results.
With 13q del, which is the best outcome of a FISH test, you can expect very slow progression., particularly if you are IGHV mutated, so you should ask about having the IGHV mutation test.
It's still worthwhile establishing a relationship with a CLL specialist, though if you are IGHV mutated, treatment is likely to be a long way off, if ever. I expect a CLL specialist would do flow cytometry testing way less frequently. My specialist did one at diagnosis (obviously), but I think the second one was about 4 years later and it showed little change.
it's not that unusual to see tests for different leukaemias/lymphomas during diagnosis. After all, the specialist is trying to work out specifically, what is causing the various symptoms, so it's a bit of a guessing game. That's also I suspect why Adante's local specialist is ordering regular flow cytometry tests, to help him understand how and how fast CLL can change. Depending on where you live, it can be quite a long trip to see a recognised specialist. If that's the case for Adante, relying on a local specialist who is willing to learn can, in my opinion, work out acceptably, even more so if they are prepared to work with the remote specialist. If they treat CLL as just another chronic lymphoma and show no indication of learning about CLL, it's definitely time to move.
I agree that withholding the results is a significant issue. I'd feel better about it if the specialist had said "You can have the results, but they are very difficult to understand*.
I agree with the other replies, in the USA it is your legal right to see all your medical records. I suggest you assert that right and ask the doctor why he would propose denying you your rights. Running multiple FLOW tests between diagnosis and treatment is unusual, unless the first set has some odd results. And for some other NHLs (like Follicular or Marginal Zone) FISH test could show 13q Mutated
The service will get formal permission from you to access your doctor's records and then set up a video appointment with one of the top CLL experts.
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After that meeting you can then consider having a CLL expert on your medical team and depending on the travel distance to the expert you could keep your current doctor and set up a team like this:
Adante, your first post said you were to see a specialist at the end of the month. With the information you shared then, and now the PET scan, it appears the Dr. you are seeing is still searching for a more complete diagnosis, so if you have an appointment with a specialist, now is a good time to see the specialist.
If you do not have an appointment or know of a specialist within your area, what Len has said in regard to contacting a CLL Society specialist would be a smart and mind-easing thing to do. The sooner you have a clear diagnosis of your situation, the better you will be able to educate yourself and become a partner in handling your CLL.
As others have said, every test that is run is one your have access to--it is the insurance you pay for that pays for the tests to be run. Don't be shy about stating your desire to have copies of all tests.
Let us know how things go! We want to support you and learn from you--believe it or not we still have things to learn. We are all different and become educators for each other.
Thank you so much. I will precede with seeing the specialist. I thought it might be better to wait until I had some more blood work to track but I see that I really need an expert to interpret the tests and decipher my stage 0. My WBC and lymphocytes are still relatively low as far as CLL goes but it is becoming apparent a CLL specialist is never too early to find. Thank you so much for your input!
You have a right to see your test results, the better informed you are the better off you will be. Mayo Clinic did a study several years ago that better informed patients survive an additional 2 years longer. I was FISH tested and results came back 13q deleted, told that was great. Then received IGVH results as unmutated. Ended up with very aggressive CLL had blood work-up every 3 months, every 6 months or year and I would probably not be here. This is not to alarm you, my travel with CLL is an exception. Sounds like you are getting good care. I picked a CLL Specialist after being diagnosed at the suggestions on this web forum and very glad I did. I see my H/O and am treated by same, but the consults between CLL Specialist and H/O have been beneficial.
I was diagnosed with CLL eight years ago. I had a flow cytometry and FISH performed at that time. All my doctor told me I had favorable results. While he didn't mention any details about the results of those tests, they were all available via their portal. In fact every test I've had over the last eight years is available to me online. Sometimes they are posted even before I get back from the doctor's appointment.
In my case I was never tested TP53 or IGVH until a few weeks ago. Turns out I'm TP53 negative/unmutated and IGVH unmutated. During my eight years of W&W I went in for blood tests every 6 months. I don't know if that means an unmutated IGVH doesn't necessarily require a 3 month schedule for testing - just relaying my experience.
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