CLL Support Association
9,928 members15,535 posts

Words make a difference at diagnosis

I have been on this site for quite a while now and I continue to see posts where newcomers are told that they have good cancer and we continue to see and use the term watch and wait. I wonder if it wouldn’t be appropriate for someone to speak/do something at the next ASH Conference and see if these two items could be addressed and changed. It would seem to me that it should be indicated very clearly to physicians that telling people they have a good cancer is not very effective. We need only read the posts here to ascertain the results of that comment. And couldn’t we change watch and wait to live and observe. Watch and wait in Canada is something you do in the bush when people go hunting. Being told you are on watch and wait puts patients who are pretty distressed on guard when calming patients should be the objective at a diagnosis appointment. Terminology is important and the way conditions, status, feelings are described can have an impact. If someone did a humourous short skit at ASH to bring home the point you would touch a lot of medical folks at once and humor would be remembered better than some dull presentation on terminology. Throwing this out there for reactions.

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Doctors tend to try and easy the 'you got cancer' diagnosis with CLL is 'good cancer'... since from an oncologist's viewpoint when looking at many other cancers CLL is chronic and in the vast majority of cases indolent and slow moving, and not immediately life threatening, and very rare. Prognosis is years often a few decades, but no cancer is 'good'. Doctors need a major rethink on that term.

Watch and Wait is still used mostly by patients, the curent medical term is 'active surviellance'.

cancer.ca/en/cancer-informa...

~chris

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I was 'lucky' at diagnosis ...

When told, I just said " have you never any good news for me ? " ... she replied " It's not acute, it's not like the one that the kids get "

I was there with my 'grown up' son ... I just thought that somewhere at that moment, a father was being told that it was his kid that had a leukaemia ... so I just thought " I'll take that "

Doctors are only humans that went to doctor school ... it must be so hard to know that the next person to come in has to be told bad news ... to do it repeatedly maybe makes it sound callous to us ... well it is our first time.

I think that that might contribute to the ' good cancer' labeling.

I'll stick to my guns ... it is the consultant who watches and waits.

ygtgo

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Wait and watch was a term I have only heard from 4 different oncologists. Good cancer, and also described as not a big deal cancer, was also use by my OLD oncologist. And never has it been described as rare.

I do however, like the live and observe phrase. it makes more sense than waiting around and watching for something to happen. that's just my thought... best wishes to everyone.

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You make relevant points ap and I rather think this post today from HAIRBEAR_UK touches on the issues you raise. There’s a lot of work and medical education needed on how leukaemia patients are told, treated and dealt with holistically and that includes ditching the platitudinous expressions which may be intended to help but don’t.

healthunlocked.com/cllsuppo...

Newdawn

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When I was diagnosed I needed treatment right away, but I remember, when I finally got to someone who knew what he was doing, him saying that I would be warch and wait except for....... No explanation of what watch and wait meant.

I can understand oncologists seeing CLL as possibly having a better prognosis than other cancers, but they need some training about seeing things through the patients' eyes. Doctors, from PCs to specialists need to either talk things through with their patients or have someone in their office (nurse practitioner for example) who can do that. I don't know that the term watch and wait is so much the problem, as the fact that it isn't accompanied with an explanation of why it is the best choice for a patient, given their profile, and the option to revisit the conversation once things have sunk in. Doctors also need more training about the emotional side of watch and wait, or whatever they chose to call it.

The good cancer - words that no medical person should ever use. Yes, there are some cancers that are always more aggressive with limited treatment options, but no cancer is good, not all cases of CLL are indolent, many cases are very unpredictable, and even the most advanced treatments don't work for everyone.

Maybe some patient panels at various meetings of doctors, discussing things from the patient's point of view, are needed. Some doctors will never get it, but some might.

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Now who was it said it's only called chronic because a cure hasen't been found yet? One of the top doctors I believe. Will have to search for his post.

You certainly have a good point AP64.

I wasent told it was a good cancer to get but for a long time I certainly

didn't understand watch and wait .

Sue

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I didn't experience the "watch and eait" comments. I found the labs last week in my electronic files from 23 months ago. When I asked the doc she said " it's nothing, don't worry about it, you just have elevated #s". That caused me a lot of distress. When I see a lab that says positive for cll with neoplasm and told it's nothing: I lose trust in my Drs care of me. I expect brutal, forthright honesty and in return I do what the doc suggests I do. Right now, I have to admit. I'm pretty angry. Facts are better than platitudes that lead to ignorance. I have a right to prep myself and family for an eventuality.

I don't even know when this doc will plan to send me to a doctor outside primary care. Lol

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I get that you want all the facts upfront as I am that way as well. However, there are many patients, diagnosed with various cancers, that don't want to know, and unfortunately our doctors are not mind readers. So we have to tell them that we expect to be treated with honesty, and that we want to be partners in our care.

Your situation is unfortunate regarding the way you found out, however, you may want to consider going back to discuss your blood work and the plan for seeing a hematologist in the near future.

Sandy Beaches

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I would be back at your PC's insisting on a referral to a hematologist who focuses on CLL. It took a fight to get to a doctor who knew what he was doing, but I'm convinced that in my case it saved my life. I dump doctors very quickly now if I'm not confident in their expertise.

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Many moons ago this topic was raised on here ... Active Management & Care was proposed, which is better than W&W.

I maintain that it is the Consultant that watches and waits, not the patient ... whilst we, along with our GPs have to deal with the symptoms of having a suppressed immune system.

I am at stage 0.

My consultant has adopted a watch and wait procedure with me since 2006.

However, I have to live/deal with the symptoms ...

The fatigue, the hard to shift infections, rashes ... shingles ... post herpetic neuralgia ... avoid people who are ill ... carry hand gels/wipes ... it even affects the social side of things ... " I'll definately be there " has been replaced with " I hope to be there " or " ask me nearer the time " ...

' do something at the next ASH Conference '

How about having an updated poll relating to this topic and presenting the result.

ygtgo

( iddw&w )

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Might be time to research another dr. Wishing you the best care-bill

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While I was waiting for my appointment with my first haematologist who ordered my blood work, I called the secretary to ask if there were any results from my labs. She said “oh I think you might have leukemia, but I’m not sure”

When I saw the doctor I complained that his secretary should not be giving out information like that over the phone and he said, “she doesn’t know what she’s talking about, you should’ve just ignored her.” It was at that moment that I decided that I would never see him again.

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Wow.

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Wow for sure. Sounds like they were both borderline careless...doctor AND secretary.

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Yes, and so nonchalant about the whole thing which brings us back to this being touted as "the good cancer". Sadly, he took quite a caviler attitude towards the diagnosis and made it seem like it was not a big deal.

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You never went back to him, right? Plus, that secretary should be fired.

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I left the office and never returned. I was accepted as a patient of one of the top cll specialists in Canada and very grateful that he is my doctor. I was shocked that the original doctor didn't take seriously the fact that his secretary was giving out such personal information over the phone. I thought that he'd say that it was really unacceptable and that he would speak with her or something like that.

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Wow is right

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Is a cancer that makes you feel tired, generally unwell and prone to infections on a daily basis a good cancer? I don’t think so. Is waiting for the day when you may require treatment to start a pleasant way the have to live your life ? Not at all, as far as I am concerned. We are all different, some cope with situations better than other, I am a positive person and take the view that others out there are far worse off than me, but Doctors need to realise that some patients struggle with watching and waiting, and I personally think it’s very unpleasant terminology to use, but there again would any phrase be better, we with cll have this demon inside us which we can’t escape from, and for me it’s communities like this, where you can have the odd rant to release your feelings that are the backbone of staying strong and supporting each other best we can.

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Amen to all of that!! Where would we be without each other??

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Well said - language is very important and it’s not easy to backtrack from shock and low mood. I like your thinking

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A “good cancer”. I think these doctors need to be retrained. A doctor in my surgery told me it was nothing and why should I get priority. Hence I make sure I won’t see him again.

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I have had a few people say the same thing its not a prioroity, or serious cancer, and well they may be right that its not as serious as some other forms of cancer. It still can be very serious. I have read post on here of members passing after a short battle. Every case is different

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Sounds familiar my doc said the same thing, if your going to get cancer this is the one to get. At the time it didn't really help, then the watch and wait was could be never for treatment but checking every three months has changed that option, now it's probably will be in the next yr or 2. Which in all fairness the first 6 mo to 1yr tells a lot.

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So how do we think a doctor should approach telling a patient he/she has CLL. Could our "hive mind" come up with some concrete suggestions that could be shared with doctors?

I wasn't told CLL was good, but rather that it was better than an acute finding. I guess that helped, at least I didn't panic, but I think we could do better.

What would I have rather heard? Maybe something like this (every hive mind has to start somewhere):

You have a disease called Chronic Lymphocytic Leukemia -- CLL . It is a blood cancer, but is not acute. That means that treatment may not be needed immediately, and in some cases for years. We do need know the progress of the disease to know when treatment is appropriate, so every X months, you will need to have blood drawn and see me/a specialist. At that point we will see which treatment is the best choice for you. Meanwhile you should continue to go about your life, let us know if you experience new symptoms or infections or other health issues. It's not ever easy to hear a diagnosis like this, but we are here to help you however we can.

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You're hired!

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I was told exactly that from my Hemetologist, almost word for word. He did mention that people refer to it as "a good cancer" but went on to explain why they say that. He has been very straight forward and up front with me so far. He does however think my fatigue is not my cll.

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How can he dispute that CLL is not the cause of your fatigue

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He says my blood work doesnt reflect it. My platettes hemoglobin are with in range.

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My bloods are within range as well except for WBC - 60. I have bouts of fatigue and several enlarged lymph nodes. I am yet to find a doctor who will acknowledge the fatigue, yet it’s mentioned all the time on this amazing website. I hope you are one of the lucky ones to outlive this “good cancer”.

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Thanks Hazel, I hope we are all lucky, however at 47 now I have a long way to go lol. Take care.

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Seems this is another situation where finding the right doctor & treatment center is so important. I'm coming up on a year since my diagnosis, and my doc and his staff have been absolutely great. At my first visit, I was given an informational packet with a brochure that thoroughly explained CLL in plain English, business cards for the entire staff (including a 24-hour phone number for emergencies), a pad & pen for taking notes, and instructions for using the patient portal (where I can communicate with doc & staff, see all current and historical labs, etc.). Emails and phone calls are returned same day, all questions are answered, and I am treated with respect and compassion at each visit, never patronized. I have my labs drawn an hour before visit time, they are always ready when I see the doc, and he reviews all of them with me during the visit. I travel just over 2 hours to receive care, but it is definitely worth it. As in love, keep searching till you find the right one!

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Sounds like where I go! Dana Farber. Getting the lab work at time of visit is so important. Also being able to track them yourself via patient portal is very helpful. Glad you, too, found a good center.

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What an excellent approach. In addition to saying the right words, it would be really helpful for doctors to have a "Dx Kit" with those items. I wonder if we can work with one of the CLL organizations to help make this a "thing".

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LLS has worked on this and LRF did for a while. I found a booklet in a hallway set up with booklets about the various blood cancers and other related information, but I had to go hunting for it. Not too long ago I connected with a woman who's mother was being treated at UCLA. We met on campus and I walked her through where the resources are snatching a booklet here and a booklet there and then took her up to the Cancer Resource Center - all things I had to find on my own, and clearly no progress has been made in 15 years.

I would have found it so helpful to have the LLS booklet in hand to refer to during and after my first appointment. I had learned to record appointments - so helpful to be able to listen to everything again!

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My goodness, you sound like you must be another patient at my own doctor's clinic!! Didn't we hit the jackpot??

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University of Rochester (NY)?

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They are wonderful there!

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Funny you should suggest the U of R in NY, 'cause that is where I go every summer to see my CLL specialist! (Wilmot Cancer Center at Strong Memorial Hospital, to be exact.) However..... my local hematologist is at HOA Brittonfield, here in East Syracuse, NY, and they handle things in the exact same way. So I lucked out with both! Do you go to Rochester?

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Yes, I see Dr. Zent at U of R. Active surveillance. If, at my next appointment, things remain stable, I'll only be seen every 6 months, down from every 3. I pass by Brittonfield on my way to my part-time job in Syracuse (live in Oneida). Best wishes to you ccok4650!

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Yes, my specialist is Dr. Zent as well. I just love him. He tells me everything straight, and talks to me about ALL my issues, right down to my IBS. He talks to my husband as well, and takes as much time as we need. And I love listening to his South African accent! What's interesting is that I was referred to him by someone on another CLL site. My doctor at Brittonfield is Dr. Anthony Scalzo. When I asked them at Brittonfield about getting a specialist's opinions, they said, "Of course! Would you like us to call and make the appointment?" I am very blessed with a top notch care team. Best wishes to you as well!

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A doctor who encourages second opinions is usually a keeper.

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Definitely. And my local doc communicates regularly with Dr. Zent. It just somehow tickles me to think of them on the phone together talking about little old me! Makes me feel very well cared for.

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My husband also sees Dr. Zent. It can be hard to understand him at times with his accent, but he is very patient.

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Yes, you do have to get "tuned in" again to his speech manner each time you see him. And he is SO full of incredible knowledge that it can be at times hard to keep up. But yes, he will always repeat himself or explain something in a different way if need be. I usually have questions written down before my appointment, and will have done my research beforehand so I can try to ask an articulate question. He also has such a quirky sense of humor that I just love him. Interesting now how many more people I'm having contact with who see him.

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My son lives in Rochester

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Did you ever live there as well? I graduated from high school, went to Nazareth College, then lived there for a few more years while my ex-husband was in grad school. It's a nice town. Not too big, not too small and has everything you need. Syracuse is much smaller, and really has become sort of a sad, "down at the heels" place. But it's home to us. Daughter and grandkids are here, so we are too.

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No cook I do not live there. I go visit my son every few months he went to school there and got married to his lovely wife. Her parents live there as well.

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My hematologist/oncologist is at Tufts Medical Center in Boston, and the same is true there. Every physician/center is different and it is so important to find the one that works for you, where you feel comfortable asking questions, where you are respected. When first diagnosed in March 2014, my primary care referred me to a local hematologist who was also excellent. He was kind, patient, and good at describing what I would be dealing with. He told me that HE would watch me , blood tests regularly etc, until I needed treatment. He did all the appropriate tests, and said that I had 2 types , one being trisomy 12, the other not mentioned, and that one meant he would keep a closer eye on me. I am sure many would disagree with his approach, Since I had already done a bit of research, I believed the Trisomy 12 was the type that we would need to watch. Actually turns out it was the 17p that went unmentioned that was the real problem. He did mention the new drugs that were just about to come on the market that would (and did) make a huge change in treatment. For me, being told that I had CLL was difficult enough. I have always been terrified of Leukemia. Growing up in the 50s it was a quick death sentence. It was the one disease (other than polio) that we heard about quite a bit. Red Skelton, a popular comedian lost his young son to it, and it was all over magazines, papers etc, as was the death of many others. I saw a friend die of it as a child. In the 70's another friend lost his young daughter. For some reason it was also used as a cause of death in a number of movies...think of a very popular,heartbreaking movie, Love Story. So suffice it to say, it was the one disease I have ALWAYS feared. As a librarian at a Health Sciences University I have access to so much information -not always a good thing. As you can imagine, I spent that year doing lots of research. I did not find out I had 17p until my hematologist referred me and I started treatment at Tufts a year later. I know that everyone is different, but this was good for me. I spent the year doing research, and had read about the terrible prognosis of 17 p del ...which was on the cusp of changing. It was difficult enough to know I had leukemia, without knowing that I had one of the most aggressive forms. Dr. Miller, at Tufts, was excellent at describing, the disease, and treatment. Imbruvica had just become available for 17 p del a few months earlier, Timing is everything, and it was a miracle worker for me. I think that most doctors try to refrain from scaring you to death . Everyone is different. Finding the doctor/center that works for you is one of the most important things in dealing with this disease.

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Hello to you, Mcpill: I was diagnosed with CLL in June of 2013, shortly before you were. However, I did not have the FISH or other sophisticated blood work done until later, after I had taken the advice of many people online, and got a referral to Dr. Zent in Rochester, NY. My local hematologist is great, but not a specialist. So I found out relatively early that I had the 17p deletion, and was of course scared. Dr. Zent calmed me down though, and told me I would probably need treatment within the next 5 years, most likely with Imbruvica, which was already showing great success. I was on watch & wait for just under 2 years before I needed to begin. Have now been on Imbruvica for about 2 years, and as you say, it was a miracle. Having Dr. Zent in my corner was the best thing I ever did, and thus knowing I was 17p BEFORE needing treatment saved me valuable time. I will see him again this June, and feel confident in having the discussion of "what if" I begin to fail on Imbruvica. So many new treatments in the pipeline! Best to you!

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Wishing you all the best,too . We are so fortunate to have these amazing drugs available to us. My doctor has noted that there are many more in the works. I was lucky to have a Cll specialist assigned to me from the beginning, so I always knew I would have the best care. Also lucky to have excellent insurance. I am happy to have received my diagnosis before I retired. I hope you can stay with Imbruvica for many more years. I am originally from Rochester 😍

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Am finding more and more folks with ties to Rochester! I graduated from Penfield High School, then Nazareth College. Stayed in Rochester for a few more years before moving to Syracuse. Have been here since 1976. And yes, the insurance issue is SO important, especially with these super high-priced drugs. I am on Medicare, and the copays for my Imbruvica are covered by a grant from a foundation. I am indeed fortunate.

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Greece Olympia grad, college in Ohio, and have been in Boston since I was 23. 😂 we now have Wegmans, Zweigles and Abbott’s. . I had missed them for many years!

So happy you have a grant!!

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Hurray from Wegman's!! How could I live without it?? Our son recently moved to CA and they have Trader Joe's but nothing like Wegman's. Last year he was cooking Thanksgiving dinner for friends and family out there, and I actually had to send him an ingredient in the mail!

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Love Trader Joe's and do almost all of my shopping there. If Wegman's beats TJ's then it must be incredible!

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I agree with the need to change W&W and cancer can never be good. My GP's attempt at calming me down (phone call) after receiving unexpected blood test results was along the lines of;" its unlikely to be acute but if it is we are talking weeks maybe months, it's more likely to be a sort of background leukaemia" This was my cue to search for an oncologist, quickly!

Michael

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You may have started a revolution. I agree with you. So, let’s hope it gets passed on. I’m going to bring it up to my doctor when I see her in May. I’m sure she will agree. Thanks for writing what several of us are feeling. Sally

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Although I heartily agree that we need some better vernacular when talking about our disease, I am willing to cut some slack to doctors who are using these terms to try and comfort us. The very first doctor who ever said to me, "It appears that you have chronic lymphocytic leukemia, but if you're going to have cancer it's a good one to have," was the ENT doctor who had ordered the biopsies on swollen lymph nodes in my neck. Since then I have had at least 3 other doctors (NOT my hematologist or CLL specialist) call it a "good" cancer. To tell the truth, when the first doctor gave me the diagnosis, I was in such shock I didn't remember anything else. He gave me something to read and I went home and hit the internet with a vengeance. Yes, we need better language, and doctors need better training in how to handle things.

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Well it has been great to read all of the different thoughts and beliefs on this issue. I would like to see a CLL world where the doctors were given the feedback on how the newly diagnosed feel when they get the news about CLL, were able to digest that info and where lots of lonely, confused souls no longer wander luckily onto this site where they can start to put the pieces back together. The patients should be directed here and elsewhere like patient power from the get-go even perhaps provided with a CLL buddy to begin with to guide them.

I have a nice hematologist who tried to be comforting with a book and a promise of treatment at the outset, but he knew little about presenting a diagnosis and nothing about the plethora of credible patient resources which were readily available. I have been in executive training sessions and sensitivity training can be quite moving and change practices if well done. I also have done my fair share of presentations to senior people. I think because 30% of us are not in the treatment group our needs are not top of mind, nor perhaps should they be top of mind, but they need to be in the mind nevertheless. The struggles at the beginning and often thereafter can be better addressed in today's world with all of our knowledge and connectivity.

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I think you're right. First, nobody can tell me there is a "good cancer"! That's an oxymoron. Watch and wait, well, I'd rather have been told that we can't treat now but there are some things we can do to keep the cancer from getting worse. Anyway, my two cents.

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My original hemo/oncologist has retired but he does a few days per month at the cancer clinic. I ran into him and he asked me "how is it going".....I said I'm on ibrutinib the drug you said that I didn't have a snow balls chance in H*ll of getting. He laughed, and said good for you!

We had a very rocky relationship when I was first diagnosed. He did however come around to my way of thinking.. Nice guy just a bit stiff until you get to know him!

Sometimes it takes time for a doctor to "read" his patient...some want sugar coating...others like me want to know the facts.

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Words have a powerful impact. Especially at diagnosis.

My initial oncologist was clear but not dismissive. I've only heard "good cancer" from other doctors.

Watch and wait, in my view, is doomsday language. I was told a storm was coming, what it would look like, and to watch and wait for it to strike. I felt like a sitting duck. I brought up the problem terminology at a [Canadian] conference but it was shrugged off.

My anniversary was last week - 12 years without treatment. The storm hasn't struck and I'm grateful. But I would have felt much better all these years under observation or active surveillance. Maybe we can just opt to change it among ourselves.

I think a patient-produced skit at a major event is a great idea. Humor has a way of making a point and making it stick and we patients would be the ones to do it.

Thanks for bringing this up, ap64.

Marcyh

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Very smart attending the conference!

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I am one of the lucky ones. I am blessed with a great Dr who, although he had very limited knowledge of CLL, was willing to answer (or find an answer) to any question I asked. I walked out in shock at my first appointment but was told to ring ‘anytime with any question’. I was referred to a lovely haematologist and then (by my request) to a CLL specialist. The only one thing I would change is the printed information I was given, very bleak indeed. I think it would be nice to have a more ‘user friendly’ pamphlet. Mine gave bald facts and to me a death sentence!

I think how we are told makes such a difference.

Peggy UK

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Yes, I agree that some of the literature needs to be written with a more hopeful approach. Yes CLL can be deadly, but it can also be treated. I wonder if some of the scarier parts of the literature are to make sure folks take it "seriously" -- and for that, I really don't think most of us require any additional impetus.

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