What helpful information do YOU wish you'd been told at diagnosis?

There is much to take in at that pivotal meeting when we're first told we have an incurable blood cancer. Memory retention isn't helped either by the impact of that unwelcome news. I remember being told to stop flossing my teeth (I was dangerously neutropenic - the condition that led to my diagnosis) and not to look up information on the internet. While I wasn't given a booklet about the condition, I subsequently obtained one from our local Leukaemia Foundation. (I think the clinic was temporarily out of stock at the time.)

I was also told that they could do something for me as I was young - which struck me as rather amusing, considering it was just before my 54th birthday. While I'm still (thankfully) watching and waiting, I would have preferred somewhat of an explanation as to why W&W was the best option for me.

Regarding reading about CLL on the internet, while I can appreciate the concern about getting misleading or even dangerous information, I would have much preferred being given a list of a few helpful sites... Mind, it took me a few months before I was ready to learn more about living with CLL and thankfully I found some excellent sites.

What information would you have appreciated being given at diagnosis that you've subsequently found really helpful in living with SLL/CLL?


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  • Information at diagnosis.. Well that’s a laugh for a start…!

    I was lying in bed in a Swiss hospital after what even the surgeon admitted was a failed operation, when a tall man with a big white beard enters and says he is the hospital oncologist..

    After the introductions he says that I have CLL, and just at that moment two nurses arrive and say that I must NOW be taken down to have a CAT scan.

    End of talk with oncologist…!! Leaflet or paperwork.. NAH…

    After the CAT scan the surgeon who did the failed operation appears by the side the machine and says that the internal bleeding was not that great… Wrong as it was proven later..

    OH, and by the way, CLL is ‘ The Good Cancer ‘….!!

    Remember that all this was in that particular Swiss-German hybrid language, which I was struggling to understand..!!

    I never received any leaflets or other information at any time…

    Naturally once back home and recovering from the botched operation I had time to sit in front of a computer and study CLL. And later the Swiss hospital head oncologist was changed to a new young man who is FANTASTIC … He attends ASHRAE and the European conferences and is completely up to date..

    I won’t bore the readers with the story of how my wife was told I had CLL, that’s another disaster by itself.


  • Hi its not untill you get access to sites like these or get to join CLL groups then go to meetings and so on that you get to speak to like minded people. Its communicating as we are now doing that gives the best advice and access to the best knowledge.

  • My diagnosis came when a blood test was carried out when nodes appeared on the nape of my neck after having donated as a regular blood donor. I think I was already guessing at some kind of leukemia as my GP advised that my blood appeared to have too many white cells.

    My first visit to UHW clinic was I think played about right. I was told, the bad news is, you have a type of leukemia called CLL, but the good news is that if you have to have blood cancer this is the best type to have. I was told that I would be monitored and that it was probable that it would be a slow progression and I would be unlikely to need treatment for some time, if ever, although CLL is incurable..

    I would have liked to have been told that the symptoms I had identified to her were most probably down to CLL. (They are) If I was given any information to take away it was not memorable. Now I keep the printout of the results but did not think to ask for that first one.

    Being 68 at diagnosis, and the result having been better than my imagination had conjured up I was able to take the information as relatively good news.

    I think that was as much as I would have been able to assimilate at that time. By the time I returned for the next test I had a pretty good basic knowledge gleaned from the internet.

    Approaching 71 shortly, I do wonder how others in my age group not internet savvy manage to get information and support.

    I use this and another site, but sometimes feel guilty that I appear to be among those older at diagnosis. I do feel for those diagnosed so young, yes Aussieneil 54 is soo young !

    What do I wish I had been told at diagnosis ? Well what I was told really, carry on live as I have been doing, just don't give blood. Giving blood really wiped me out.

  • Having been diagnosed at 47, l walked away knowing that the new career path that l was training hard for, was most likely never going to come to fruition. I had really no idea what to expect. Was given nothing in the way of books, leaflets, website address, contact numbers, etc.

    Three weeks later l had my first Haematologist appointment and walked out, once again with nothing in hand. A little more stressed as to why l needed to have more blood tests, along with a CT scan ?? I did think at the time, that l was extremely lucky, as this is the best type of Leukaemia to get ? Hmmm l do question it as my energy levels drop, to the point where l wonder how much longer l'll be able to stay working, pretty much a full week.

    I don't commit to anything, just incase l don't have the energy to get there ? I can't party like l use to ! I can't take on any overtime at work ! I always made plans for my future. Now it's just about the next day and even that l might have to cancel. It's nothing to spend a full day just laying around.

    I now read and research as much as l possibly can. I'm in touch with the Leukaemia nurses in my area and meet with two groups as much as l can. Must admit though it's hard when there are so few in my age group and my area.

    I do still thank my lucky stars and try very hard to think positive and know that at least l haven't had to endure radical surgery with only two seconds notice, like so many around me who have gone through other cancer treatments.

    Thank heaven for research and bring on a cure PLEASE


  • Reading some of the experiences others have had, I consider myself quite lucky in the way my diagnosis was delivered but in reality, I too, left with no actual information or contacts for support.

    By the time I received my CLL diagnosis, I'd researched the possibility myself (slowly rising lymphocyte levels over some years) and concluded that the haemotologist was going to deliver that news. However, the impact was no less brutal or scary.

    I'm immensely interested in this subject because I managed social work services in a large University hospital and the community and had staff attached to multi-disciplinary oncology teams. Specifically for lung and renal cancer and HIV/Aids service. Thinking back, in all my career, I cannot recall involvement at a social work attachment level with haematology.

    Over this last year since diagnosis, I've come to realise that CLL specifically is a bit of a 'Cinderella' service and because individuals don't automatically go into treatment mode, it's all too possible to fall off the radar. I can remember head and neck cancer services fighting for funding for a social work attachment for that reason. Cancer has much greater social and emotional implications than just the physical manifestations.

    I left the diagnosis room with a rudimentary knowledge gained personally on the Internet but the Consultant was unable to provide me with any specific literature or a supportive network to contact. He did say there was a support group but it was aimed at acute cases not CLL. That's still the case there apparently. That would have been my greatest need, - a group to contact for mutual support and understanding. I found that myself the next day through Maggie's online and then Macmillan (UK).

    The way my diagnosis was delivered has caused me to consider the unmet need at both a personal and professional level. I know that my specialist social workers and OT's as part of oncology teams became immediately aware of newly diagnosed patients and responded accordingly. Of course many people didn't need support/advice or even a conduit to services but many did, including their traumatised carers and loved ones.

    Because CLL doesn't follow traditional medical pathways, patients fall into badly maintained hedges it seems. W&W doesn't register a need somehow and advice, network links, counselling, carer support and welfare benefit and employment advice has to be sought not automatically offered. I'm lucky in knowing where and how to access them but even I felt cut adrift post diagnosis. Supportive fellow sufferers scooped me up very early on and for that I'm very grateful.

    The very least that newly diagnosed people should be offered is a link to sites like this, numbers for support and access to information that is balanced and informative. Ideally a pack should be given following diagnosis and a key worker assigned from a haematology team. I'm not a great fan of CLL'ers being at the tender mercies of often uninformed GP's who tell them they've somehow won the cancer lottery with the 'good type of cancer!'

    Some day I'll tell my Consultant that it wasn't particularly sensitive to sit me in a haemotology day room next to a patient receiving an intravenous infusion whilst I waited anxiously for my diagnosis. Delivering bad news is a skill that many physicians don't do particularly well I'm afraid but I was clearly luckier than most.

    I have my haematology consult tomorrow so fingers crossed.

    Newdawn x

  • i was asked to attend an appointment at the hospital with a heamatologist,i just assumed it was about my anaemia which i have had for years...got there,saw him,he examined me,went out of the room,came back and said to me..."you have a condition called CLL Leukaemia." my first thoughts were OMG IM GONNA DIE...he told me a bit about it,not much really,then left the room!!! i was left there with the nurse who went to find a booklet about it...i was in a state of shock...he also told me i had had it for at least 2 years,which i couldnt understand because i was having regular blood tests for anaemia and the doc hadnt said a word...so i immediately changed my doctors...i rang hubby at work and told him,he went very quiet,couldnt believe it, how i drove home that day i have no idea,i cried all night,went on internet and made myself a million times worse,scared hell outta myself,hubby said not to go on there any more!!! but i rang my haematologists secretary the following day and she was lovely,i honestly thought i would be dead in a few months,and the W and W scared the hell out of me too...but now,4 years and 5 months since diagnosis i have more or less got my head round it,its in the back of my mind constantly,especially with this tiredness i get,dont know if thats a symptom but i get really tired on times....looking back they should have explained it a lot better and not just sent me away with a leaflet to read!!!

  • After a routine blood test, my GP arrived at my door to tell me that I had CLL. ( I think she did this as I had just lost my sister to ovarian cancer a couple of months previously, and she was her GP as well ). She told me that an appointment was made to see a consultant, I asked her " Have you never got any good news for me, it's always chronic " ( lightheartedly - I have other issues, and am not unknown to my GP's ).

    She explained that ' acute ' is the more serious, the one that the children get ....... That made a big impact on me, I'm not being told my child has Leukaemia .... The Consultant had me and my wife leaving the hospital thinking " ok it could be worse ".

    I'm now in my eighth year W&W, and even when a couple of nodes appeared, I left the my Consultant reassured, the nodes and the blood counts are his problem. Every time I have my blood checked, I go through my health issues, fatigue infections etc, but other than ' blood count is up slightly ' ... that's it ... they'll tell me, when it becomes a concern.

    The only complaint that I have made to my GP's and Consultant, is that there is no link between them - I would like a 'a key worker assigned from a haematology team ' as stated by Newdawn, You rarely get the same GP twice in a row, and when I'm really low fighting infections it would also help the GP' if there was a key worker, who would have experience with both the CLL and me personally. At least we should have a 'passport' that list the do's and don'ts, that are directed at the patient, and more importantly every GP.

    stay well

    ygtgo .... ( you gotta go oww! )

  • Not another Goon show fan? It is still broadcast in Australia every week!

    Thanks for your encouraging news. Good to hear that your diagnosis was done fairly sensitively. It can be done!


  • Yes I'm afraid I've got the Spike Milligan humour gene.....

    I have Photophobia/Hemeralopia due to an eye injury, so obviously I had a " I've seen the light ..... It Burns " T-Shirt printed, put on the darkest ( welders ) shades and of course, wore it for the first time at church.

    I now have mobility problems, due to pain left to me as a result of an other injury, and occasionally let out the odd sudden ' yelp ', a stabbing pain, which comes on instantly without warning ....so naturally, another T-Shirt with, " you gotta go Oww! "

    So if you find yourself sitting in hospital waiting endlessly for your name to be called, I suggest you pre-arm yourself with a mp3 of " What time is it Eccles ? " ..... for those who would like to know the time, I would suggest that you - ' ' What time is it Eccles, ' over on You Tube.

  • No need to watch You Tube, I've got the time written on this piece of paper!

    My favourite time piece is Bluebottle's watch when he is timing the action on the Africa Ship Canal!

    Glad you find humour a helpful way to live with your health problems.

  • I think some doctors need to admit they are poorly informed about CLL/SLL right off the bat and offer a referral to a doctor, knowedgeable in this field...

    It would also help, if CLL/SLL patients were referred to haematologists and not oncologists which is the current common practice in many clinics...


  • Doctors need to stop being wary of support groups. I get the feeling that doctors think that if we talk about our ailments with others we'll all become hypochondriacs. My hematologist was mildly amused by and didn't know why patients bring someone with them when they come to an appointment or for treatment. The authoritarian relationship between patient and doctor is still a huge issue - a move to seeing themselves and behaving as health partners would be helpful.

    I would love to have a 'team' of health partners helping me beat this disease. In my GP clinic I get to see a range of doctors and most are sympathetic but don't seem to understand the nature of CLL. I have begun to avoid the clinic, only going there for prescription repeats if necessary.

    The whole 'it's okay, it's incurable, but you're not going to die yet, maybe not for years, can't tell you when and why would you want a better idea of that anyway' attitude stunned me.


  • I was told something similar - incurable - unlikely to kill you - but put your affairs in order - a bit of a mixed message there

  • We had done quite a bit of research online before diagnosis - as there had been nearly 5 months between the first blood test that showed abnormalities and the formal diagnosis by the consultant haematologist. . We got no booklet or recommendation on web sites fore information - nor was there any nurse practitioner.

    It has become clear over time that Watch and Wait is the correct approach where this is possible - delaying any form of treatment as long as possible. This is not what people expect as we are bombarded with the message almost daily that catching cancer and treating early is paramount. So as has been said above a better explanation of What W&W is and why this is the best course for blood cancers would save a lot of worry.

    Hopefully best practice will be there for those being diagnosed now - good leaflets available on the day - recommendations of support sites CLLSA LLR MacMillan - and have a nurse practitioner assigned for one to one support if/when needed.

  • My current consultant did say ' Let her worry about the CLL you focus living the best you can'

  • We were fortunate to attend our first CLLSA meeting only a few months after Diagnosis. That certainly helped answer many of the questions which we had and many that we had not realised we should be asking at the time.

    Certainly it is important that we are actively involved in our care together with the doctors. However this is important with any medical issue not just CLL. The importance of collating results and taking these to any appointment has become clear from personnel experience and from comments at various meetings. Doctors only share information relevant to the referral. Having all the results together may result in you being the only person with the full picture. You can then share where appropriate and avoid duplication of tests.

    This is not something your Dr is likely to say at any appointment but worth doing.

  • Like many my diagnosis was following a routine blood test, i think as part of a general health check. During the check the health worker checked my cholesterol level and decided to get it checked in the lab (sending away a sample). They also spotted i had high blood pressure so i had to go back to the doctor and she put me on something for that. The strange thing was that i do not remember any swelling of Lymph nodes, which i'll come back to later. That checkup was 23rd April (St Georges day, how i rememember it).

    In Early June we visited some friends in Wales and middle of e week before my neck was noticeably swollen, however, i wore shirts (unusually) and masked it from them.

    Once back wentto the doctor, he decided on another blood test, now, that was the Wednesday morning. I was alone as my wife had gone away for a couple of days. I remember sitting at my desk th Thursday morning and there was a knock on the door, looks up,'hmm, thats not good, its the doctor'. We sat in the kitchen and he told me I had CLL, not to worry, they have some people in the practice with it and they've had it for years. He'd arrange for me to see a specialist.

    I had the prescence of mind to get him to write it out in full on a scrap of paper, which meant i could research it on the internet. My biggest short term worry as i read web pages was when to tell my wife, ring her ad worry about her driving 160 miles home or worry about it alone for a couple of days. I chose the latter.

    When i saw the consultant he was great explained loads, and answered every question. But since then i've asked him some of those things again because i think i went into information overload in the first meeting.

    (Swollen neck thing - on reflection was worring and the consultant was initally concerned tht due to apparent speedof swelling i might have someyhing more aggressive. I was discussing with him at start of my second cycle that i no longer snored! Conclusion drawn that the swellings were initially more internal than external, and my worsening snoring over many months before now explained.)

    On my first retux the nurses gave me a MacMillans book, their own pamphlet ad the CLLSA book.

    All in all i think i got the info i wanted, i probably dont want as much as some other people.


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