There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions. People who don’t have access to a CLL specialist who are confused about next steps. And newly diagnosed, anxious people like me who have CLL specialists and are being constantly tested. I have eight CLL appointments in April.
I am being treated at an academic medical center and NIH. I am having 450 chromosones tested in three weeks. I will find out if I have TP53 (doubtful with my Trisomy 12), Notch 1, IGHV, etc. I will also find out if I am more at risk for many other cancers and diseases that are unrelated to CLL. Waiting to take these tests has been excruciating even with Zoloft. Results of these tests could tell me that I am high risk for Richters or pancreatic cancer.
Dr. Follows at Cambridge is my favorite person to watch on YouTube. I wish he was my doctor. He said that we really need to think hard about whether or not we want to know all of our tests results. Knowing some of this information can literally make it impossible to feel calm and happy again.
Has anybody told their doctor not to show their test results with them?
I think you make very valid points here EastBayDad and I’ve come to be reassured that the NHS hasn't offered me anything like that level of testing or information during a 12 yr period. I was dx in May 2012. It took me 6 yrs to have a single probe test done for TP53 and that was only to see if I met the criteria for the Flair trial. Detailed next generation sequencing is not shared with me by the trial team and there’s times I’ve wondered if my questions are even fully understood!
I’ve now reconciled myself to ‘going with the flow’ and I’ve taken the view that if I can’t change it, I won’t sweat it. I’m Trisomy 12 too and I could have probed and demanded advanced prognostic data but why? I’m already primed to expect the unexpected and I’ve had a secondary skin cancer (melanoma). I know only too well the possible added chromosomal risks around Tri 12 but I don’t need monthly consults reinforcing the fear.
This doesn’t mean I’ve got my head in the sand because I have a well developed understanding of the condition and want reasonable monitoring but frankly, I’m not sure filling my psyche with further doubts, angst and unpredictable possibilities will advance my health one bit. I’m presently uMRD and have further trial bloods done tomorrow to check out my remission. Of course I want to know the outcome and detail but for the sake of my equilibrium, I’ll settle for that for now. It’s served me well for 12 yrs and prognostically, I wasn’t expected to survive this long.
Unless telling me of the risks allows me to head it off at the pass, I’ll confront whatever needs confronting if and when it happens. Some people demand detail at a molecular level and that’s fine if it’s desired and tolerated but let’s consider the emotional impact too of technical overload especially for terrified newly diagnosed. Let the information work for you not control your life is my motto.
In my country much of that genetic testing is postponed until start of treatment since the markers may change over time and therefore testing early is viewed as a waste…
OTOH, I did look forward to the results simply because they helped narrow down my literature search 😊
EastBayDad, I think we all have to find the balance of info we want that suits us. I can see merit in the view that knowing test results can be upsetting. Of course if the results are good, knowing the results can be also be very reassuring.
I have friends who have cancer who dont know much about their cancer, prefer not to, and rely on their doctors or spouses to keep them on track. We actually have a decent number of posters on here who do not have cll, but rather their spouse (or parent) does, and they try to stay informed since their spouse doesnt care to.
For the most part, I am one who wants to know the results of my test and info about my cll and treatment and prognosis. Had I not been informed enough to ask questions instead of blindly relying on my doc, I would have been treated too early and with a type of chemo I did not need.
But if I was someone who knowing my test results and other info about my cll made me so anxious it impacted my quality of life, that might outweigh the benefit of being informed. I think relying on a good doctor to tell you what you need to know is not necessarily burying ones head in the sand.
I would argue that people on this site do not necessarily represent what a typical cll patient looks like. I presume that most people on Cll unlocked are here because they fall more into a group that wants details of their cll and treatments. Conversely, a lot of people with cll would never join a site like this, they just prefer not to know more. I think thats okay.
I am guessing you fall somewhere in between and are trying to sort out how best for you to go. I would imagine, based on your post, that even reading some members posts on here is stressful for you. It’s as if you are wondering out loud if you would be better off not being as informed as some people on here want to be.
There’s no right or wrong answer to me. Everyone has to decide for themselves the level of info they want. I would observe that you probably wouldnt even be on this site if you weren’t trying to be somewhat more informed about your cll. But how much info is too much? In my book, thats for each of us to decide. It might well work best for you just to tell your doc to discuss the results with you he thinks are important for you to know, and not worry you with all the others.
I am more at ease with more data, than what ifs. If the data is bad, so be it, I'll figure out how to deal. But if it's good, it's a load off my mind.
So, I am welcoming the "expansive" panels I'm getting in June. With treatment for me now in the mid-to-near timeframe vs the far off one, I'd rather know EVERYTHING (vs what I know now - the most important things) so I can rule out treatments and clinicals I personally don't like for my 1st shot at treatment and just narrow down what I might like for lifestyle, timing, pre-existing health issues I have, etc (just this week, I've been amazed at how many 1st treatments regular and clinical options there are and I thank you for all the folks who have sent options my way - my doc actually really was excited about one, so that's our leading candidate for June discussion - yeah, he got back to my email - I was surprised b/c I told him we'd talk after my blood panels in June, but I have a good one)...
I was diagnosed at 55 and almost 7 years later I’m still here enjoying life. My advice is to focus on the things that are within your control such as diet and exercise and pay less attention to the things you can’t control such as the future course of your disease. We are all going to die eventually, but don’t let that fact ruin your day today. I am anxious the day of my appointments but I’m then able to push these fears aside. Occasionally, I’ll lie awake at 2AM thinking about CLL but most of the time I sleep soundly. Educate yourself about your condition but try not to let it overwhelm you and become the focus of your life. Enjoy the present and stay positive. I’m convinced it helps.
If you lock your post the whole internet can’t read it.
A lot of the testing at academic centers isn’t necessarily for you. Sometimes they are testing to see if certain markers in one type of cancer matter in your type. Then once they collect a lot of data from patients they look in hindsight to see if they are prognostic or predictive.
There is a big heme panel they do at DFCI. I don’t think the huge list of NGS markers all apply to CLL. But, later they may find something does.
thanks for the reference of Dr. Follows, his presentations (YouTube video clips) are well done, educational and pleasing to watch and listen at!
We’ve been told by the CLL specialist (Dr Siddiqi) and by other specialists /counselors, that there’s a lot of data out there, leading to a variety of scientific / medical knowledge , however still a lot of data there’s yet not much knowledge of , still a lot (a lot!) of unknowns , but well … that’s how research works .
If one accepts that we are made of atoms, molecules , cells, genetics, chemistry etc etc aka biophysics and that research on earth and in space discovers and solves , innovate and opens up new doors to potential therapies , as well to new problems / unknowns and so ., science and research continues , and in meanwhile we have the ability to live longer and in better health if we play our cards right ,along with a dose of pure luck .
I understand that for those with a life view of whatever (organized) religion one rather chooses not wanting to know all that, and telling the docs ‘please don’t show me all the test results’, however that would put the docs in a somewhat difficult and awkward position as well because it is all about teamwork, right?
This the exact issue I experience some years ago when I went to see my haematologist, and my daughter accompanied me and asked some questions that I did not want to know the answers to, unfortunately I did get negative answers which sit firmly in my mind to this day. I now only go to haematology appointments on my own so I only get the information I can cope with.
I like to be informed of anything either way, especially after living with CLL for over a decade. One thing I wish is that the patient wouldn't be the first one to see all the numbers. I can see 10 results within range, but my eyes stare at the one result that is out of range=anxiety. I've gotten better as the years have gone by, knowing that there are many variables. The PA has told me oftentimes that he would inform me right away if something was out of the ordinary. I'm also at an academic medical center, but fortunately I'm not put through an overabundance of tests.
I have UCSF 450 in three weeks. 450 chromosomes most involved in cancer.
when my husband was diagnosed in 2016 , at age 55 , he/we were advised by previous hematologist/oncologist not to think about it , and that’s what my husband did, not thinking about CL at all. It is just a few years ago , since the pandemic in 2020 and when his ALC past 30K that my husband is open to hear, read, and listen about CLL.
Since my understanding is that you were just recently diagnosed, it would be indeed of a great benefit to you to distance yourself from the diagnosis and use common sense going through life.
It took us some years to come to terms with it all ….
I am "looking forward" to yet another Bone Marrow Biopsy to test my MRD level although I have asked my hospital if it is really necessary. Apart from the issue of discomfort, I can't help wondering what useful practical purpose a MRD test serves. Sure, it measures the depth of response, and may help a projection as to the future length of remission (I don't find such projections at all helpful). But, as far as I am aware, these don't give decision as to retreat according to current guidelines. So I'm feeling somewhat sceptical (and unenthusiastic) about my next test and in general I wonder if MRD testing is being a bit "hyped up" in some institutions??
Interesting perspective - I always thought I would want to test when I am 75% through my treatment protocol and 6 months post-treatment. However, your post is making me reconsider. Thanks for sharing!
Lot's of very valid points in response to your initial post.
I tend to agree with Newdawn. It's good to know everything relevant to any immediate decision you need to make but my feeling (and this is something that happened to me recently prior to a possible trial) is that you can become a research guinea pig and many of the tests primarily benefit the doctors and researchers. They should make it clear which tests are really necessary for a diagnosis and a decision on whether to treat and with what.
I'm lucky, I have a wonderful consultant at a major London cancer treatment centre. We discuss everything, and I know he has my best interests at heart. I keep informed so that our conversations are meaningful, but I haven't had his years of training and experience and never will.
Lastly CLL is not static, your initial diagnosis may, probably will, change over time, as will the treatments available. I would only want to be tested on an as and when needed basis. And as for prognosis, I've already exceed my original consultant's first best guess, not because I have lots more tests but because of the very many new treatments that were unavailable when the prognosis was made.
Whatever you decide , I wish you all the very best.
I am a big information seeker and like to know what things are and what they mean. I’ve learnt heaps reading and interacting with posts in this site.
Loads has gone on in my life since diagnosis and bigger stresses surfaced. I now find I think less about CLL as a result, even though I wasn’t too anxious from about 6 months after that initial diagnosis. (Got my head around it).
Being in a small country I don’t know my markers and may not until treatment is advisable. Being younger (in terms of CLL) I’ve concluded that’s inevitable.
I very much appreciate what’s shared on this site to continue my education into the future.
The dedicated angels who keep things scientifically on track when questions are asked .. are angels for us all and vastly appreciated. ❤️
As for me personally, I want to know everything I can about my CLL. But I have 2 friends at church with CLL who know next to nothing about the disease. They both appear to be quite satisfied with their status. I have talked with them several times about CLL, this forum, etc, and neither of them have any desire to learn more about the disease. One of them is basically homebound, but thinks this is just how it is has to be. She is not in treatment. The other is more active, but not really “well”. She is also watching and waiting. Neither of them see a CLL specialist nor do they want to. Different strokes for different folks.
These tests are not even done where I live. They are only done right before treatment. Because some of the results can change with the passing years. Knowing that none of us is going to live forever and sooner or later we will have to give in to something I don't think it is reasonable to even think about these issues. Que Sera Sera. C'est la vie. Cross the bridge when we come to it.
I posed the same question to my CLL Specialist at UCSF yesterday. Here is his response. I posed this question because my CLL has been a bit aggressive and I am worried that my test will show Notch 1 and unmutated.
Here in Canada most of those tests are only done when it is time for treatment. I think I only had a flow cytometry test to confirm CLL. When I was first diagnosed I would have preferred to have the FISH etc...tests done, but in hindsight I am glad they didn't. I have been on watch and wait for 11+ years now without the added worry of one of those tests returning something negative that I would have always had in the back of my mind. Ignorance is bliss
Everyone is different, I would probably be irritated if my doctor did not give me results. In fact, I get all my results by hospital portal as soon as posted to doctor. I have also seen people who did not want to know anything or even have treatments due to advancing age. Blessings.
I just leave it to the experts and take their advice. I haven’t a clue what any of my results have been, I just ask if they are ok, why have extra worry ?
I wish I had the option. I'm in the US and my insurance denies almost any test my doctor orders. Recently denied molecular pathology to access my response to treatment. I'm also on 1/2 dose of medication (venetoclax) as I'm stuck in an insurance loop hole as to who will pay for that. Funny thing is that I started treatment earlier than I would have since I have "good" private insurance now. You could get the tests but decline the knowledge of the results until needed.
I see you’ve got United healthcare Group. yes, we used to have that one as well. even an employee told me they are notoriously for knowingly denying claims.
I actually have atena PPO. My husband works for a big of company and it is the most expensive insurance they offer. It should cover everything with very little out of pocket. However this year they are finding a way to give me the run around at every turn.
ACA should protect you with some of that, no? and/or state regulations? what is their arguments of denying? even if it says in your policy that you are covered .. thanks in advance
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