It will be hard to have not seen today’s news reports highlighting the plight of cancer patients post treatment and how Macmillan is working with the government to address shortcomings in care and support post treatment. This may also raise awareness in the general population that once treated cancer is not over for the patient and their loved ones. The provision of a recovery package is much needed and this news is encouraging, It could help many, but how much does it help the CLL community?
Reading the News reports and listening to the broadcasts I cannot help but think of the CLL community and how familiar many of the issues identified that treated patients experience will be to our own treated and those in “watch and wait”. W&W is sold to the patient as part of the treatment process of CLL but the symptom burden, physiological and physiological effects may not be recognised and consequently may not be addressed, rusulting in patients not having access to support. Currently therapy does not cure (apart from a few in SCT), so treated CLL patients do not just worry about if it will come back, but when. and the commutative consequence of different treatments over time as well as disease effects. This may bring different challenges to the table for a CLL patient and their loved ones.
The tag “cancer survivor” is hard to attach for me to those living with CLL pre and post treatments, after all most of the time we may just be trying to live with it. Does it mean you survived cancer or that you are one tough cookie having to live with the disease? I guess cancer survivorship is living with cancer.
The most commonly diagnosed adult leukaemia (CLL) and other chronic so called “indolent” cancers that require similar management and treatment approaches needs further data evaluation and representation following this research. Will we continue to be invisible?
"The soaring number of people surviving cancer should for the first time be given comprehensive emotional and social care support, as well as medical treatment, Public Health Minister Anna Soubry and Macmillan Cancer Support Chief Executive, Ciarán Devane, announced today (29 March).
As people are being diagnosed with cancer earlier and treatments have become more sophisticated and successful, more and more people are surviving cancer but many are struggling to get back to normality.
A national survey of cancer patients suggests a quarter (25 per cent) feel isolated to some extent after treatment1. Almost one in three (30 per cent) say they have numerous issues that are not being addressed. These include fear of their cancer spreading and not having the same member of staff they can speak to about all aspects of their condition2.
The Department of Health and Macmillan, along with other charities, have worked together to develop an assessment and care planning process to give patients the best quality of life after surviving cancer. This is a support checklist for doctors and nurses to make sure cancer patients are receiving the necessary practical, physical and emotional support depending on their need."
The recommendations are laid out in Living With and Beyond Cancer: Taking Action to Improve Outcomes, published on 29 March 2013. Gov.uk
This publication aims to support commissioners, commissioning support units and providers to take the necessary actions to improve cancer survivorship outcomes.
It sets out what has been learned about survivorship, including interventions to meet needs that have been tested and are ready to be spread across England. This includes the introduction of an integrated package of:
structured holistic needs assessment and care planning
treatment summaries
patient education and support events (Health and Wellbeing Clinics)
advice about, and access to, schemes that support people to undertake physical activity and healthy weight management
“All cancer patients should receive a 'recovery package' at the end of their treatment offering ongoing support, the government has announced.
Currently as many as three in four patients do not receive any information on coping with the long-term effects of their illness, figures suggest.
The care plans will identify patients' financial, mental and physical needs.
Ministers called on the NHS to take "urgent action" to help cancer survivors in England.
Macmillan Cancer Support, who helped develop the proposals with the Department of Health, said at the moment many patients felt isolated once treatment had ended.
Very few cancer patients are given any written information on recurrence or side-effects of treatment, the charity said.”
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Excellent information Nick and incredibly thought provoking in terms of how the uniqueness of our condition further challenges the notion of 'supporting survivors'. It's something that I've been thinking about for some time because of the 'incurability' element of CLL (stem cell treatment excluded). CLL patients have enduring fears throughout the course of their lives and the same issues pre-treatment as others have post-treatment. We are 'survivors' throughout. We can't look to the more predictable stages to guide us. And yet, as you observe Nick, the services in terms of psychological and social support are absent in the W&W stage for us. I suppose it's brought home in even greater starkness, the uniqueness of this form of cancer.
Are there any other cancers (and I'm not talking about the higher risk cancers like pancreatic and lung etc. because even there cure is statistically possible) where absolute cure is not yet a possibility? I'm sorry it's such a depressing question but it's a reflection of our reality which we all face.
Basically, what I'm asking, - 'is leukaemia the only truly incurable cancer or would physicians say it's not possible to say that when stem cell treatment exists (all be it for exceptionally low numbers and with exceptionally high risks)? Is this cancer really that unique in terms of it's eventual but hopefully very long term outcome?'
I just edited the blog to remove repetition and focus the information.
I have added the The recommendations laid out in the guidance document:
Living With and Beyond Cancer: Taking Action to Improve Outcomes, published on 29 March 2013. Gov.uk gov.uk/government/uploads/s...
I am not sure about how unique CLL is? Being relatively rare CLL it is not that well understood by many in general medicine. . We are invlisible, Has the disease demographic and outdated attitudes hampered progress?
Many cancers have watchful waiting and staging, most indolent lymphomas, postrate, even some forms of kidney and lung cancers... however I think CLL has the longest period of W&W, for some patients....
Remember, that the average age in diagnosis of CLL is 72 years old. For the 72+ group the period of watchful waiting would be far shorter than someone diagnosed in their early 50's.
Further, pre and post treatment support would be very different for the older patient, where treatment options are reduced and comorbities and other health problems play a larger role.
Even the ability to care for oneself post treatment, becomes a major issue in the older patient.
One size does not fit all... the needs of a cancer survivor at 40 are very different than the needs of a cancer survivor at 75 years...
Looking at the denographic of all cancers within the report I see that 63% of all cancer is diagnosed within the over 65 age group. I doubt CLL is that unique where unmet care and support needs are concerned?
I did look up on Wiki the definitian of "cancer survivor" as I struggle with it.
"A cancer survivor is a person with cancer of any type, current or past, who is still living. Whether a person becomes a survivor at the time of diagnosis or after completing treatment, whether people who are actively dying are considered survivors, and whether healthy friends and family members of the cancer patient are also considered survivors, varies from group to group. Some people who have been diagnosed with cancer reject the term survivor or disagree with some definitions of it."
" the UK defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who:has completed initial cancer management and has no apparent evidence of active disease;
is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness;
or
has had cancer in the past.""
I feel better now, but am still unclear of "survivorship", Can we own the term and apply this document to us, I think we can, if you are a cancer survivor at diagnosis.
I was interested in information (from box 5: How high quality cancer survivorship can improve NHS outcomes
(Domain 2: Enhancing quality of life for people with long term conditions)
Domain 2 is of critical importance to the survivorship agenda.
Many cancer survivors will live with long-term conditions, either as
independent co-morbidities, or caused by their cancer or treatment.
Improving survivorship support can make significant improvements to
people’s quality of life.
It will enable better management of currently undetected or poorly
managed anxiety, depression, fear of recurrence, and physical
consequences of treatment.
It will offer the opportunity to address psychosocial effects such as
relationship difficulties and loss of self-confidence, or sub-optimal
physical recovery.
It will offer support to minimise loss of/inability to retain/difficulty in
reintegrating or accessing education, employment or training.
Yes Sparkler, I had forgotten to add that Wiki also says::
" the UK defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who:has completed initial cancer management and has no apparent evidence of active disease;
is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness;
or
has had cancer in the past.""
"Living with". helps me to take ownership, However if the current publicity is educating the public and general medicine that cancer does not end with treatment, that a "recovery package" is required, perhaps we need to start a campaign for a "living with package"?
I remember when on the Macmillan Cancer Support Course that I struggled to fit in CLL into thier own management and support paradigm. Several of the boxes created to support others manage their own disease, didn't quite work for me and CLL support.. . A cancer of the immune system just didn't fit at times.
It is hard, it did reinforce why I am so passionate about supporting others with CLL. It is not just general medicine who struggle with us, but also national third sector organisations driving change.
We need to develop our relationships with organisations like Macmillan as well as do more lobbying.
I like the sound of a 'living with package', Nick. At least the new LLR booklet talks about many of us having to live with symptoms for quite a while, before treatment.
Yes we need to try to educate, not only our clinicians but as you say, the third sector too.
......and of course, it is why forums like this are so important - we have to support each other! We are the only people who really understand what life with CLL is like.
As a novice I find all this hard going, I am puzzled why the NHL data from the The Quality of Life of Cancer Survivors in England study has not been used to include NHL pathways in this guidance. I guess it only concentrates on Cancer not leukaemia and lymphoma.
.I hope someone with more knowledge and understanding chips in with their take on all this.
The Australian Leukaemia Foundation pushed the 'Cancer Survivor' label four years ago and back then struggled with how you apply it to those on W&W. Last year they dropped using that term as 'unhelpful'. I quite liked the term though it can be seen to be insensitive to those that have lost someone to cancer, particularly where the deceased fought a hard battle yet didn't survive.
As Chris says, "One size does not fit all". Beyond identifying people who have been touched by cancer, trying to cover all situations with one term is doomed to failure, as it will not be conducive to providing tailored support without some further level of refinement.
There is definitely an unmet need in the provision of relevant support to those living with the stresses of W&W. However, given the higher priority that will no doubt be given to those that have had treatment and are cured or in long term remission, yet require assistance to get back to a normal life, I'd suggest that the best solution for cancers like CLL would be to raise the awareness of good self-help support groups (such this one), to specialists so they can refer new patients to them. Encouraging and supporting specialists to monitor effective support groups and intervene where appropriate, would be a very efficient low cost option to meet a great deal of this support gap, but how to make this happen within public health bureaucracies will be a challenge!
I'm a member of several CLL support groups and nearly all greatly benefit from having at least one medical subject expert that is willingly to donate their time to peruse postings and add value where they can. Not only is the person that raised a concern helped, but many others in the same situation are helped at the same time or as long as the postings are kept on-line and searchable.
There is of course a danger of advice being inappropriate due to important information being omitted in the original posting and other readers incorrectly applying the solution to themselves, so the real benefit comes from encouraging someone that is ignorant of how serious their situation is to seek earlier medical intervention - and perhaps by dint of raising extra information gleaned from the support site, getting the recipient's doctor/specialist to investigate further and hence resolve the matter before it becomes much more serious. Also, overstretched medical systems benefit from not having people making appointments for some new concerning issue to them which isn't really worthy of medical intervention, due to reassuring feedback from others that have experienced that issue.
There is a huge amount of wisdom in these support groups from people that have actually lived through challenges faced anew by others - not just studied it years ago or observed it second hand in a patient. Why not tap it?
Couldn't agree more with everything posted here. This gap in knowledge and understanding, even among professionals, about what it means to live with CLL (or any indolent heamatological malignancy) is exactly what I am hoping to address with my research.
I'm posting an update of the work as a blog now, as it's too long to put here as a response. I'll re-post the links to the questionnaire as well in case anyone wants to contribute who hasn't already.
Monica Else has done a lot of work on CLL QOL, and gave a presentation some years ago at the UK CLL Forum. She used to be based at the Marsden in S London.
Monica gave a presentation with her husband at the last Clinical Sciences Day, "Living Beyond First Line CLL Therapy" in October. She was very helpful and knowledgeable, she could be very helpful with your project.
She discussed the work evaluating the Quality of Life data with the NCRI from CLL4 and was first author of the published paper last year. let us know if we can help you get in touch.
She is still very involved and working with QOL information that this study has produced.
Publication details:
"Quality of life in chronic lymphocytic leukemia",
author = "Monica Else and Kim Cocks and Shirley Crofts and Rachel Wade and Richards, {Sue M} and Daniel Catovsky and Smith, {Alastair G}",
Cheers Nick - I've already cited this paper in my lit review, but I'd really like to speak to Monica in person. If you have contact details, that would be fabulous.
It is fact, that online services are to become much more high profile and upfront in the management of health generally, as the "new" NHS changes come into fruition (I can only speak for the UK).
However, there will always be those who do not access the Internet. I have been a member of various CLL forums and lists since my dx and they are invaluable but membership is a minority of those actually affected by CLL. Indeed, if you are reading this, then you are already accessing these services; I am concerned for those many people affected by CLL, who are not. Where are they going for information and support?
I feel also, that online support (good as it is), can only go so far. There are times eg., when first diagnosed, or during times of extra stress, when one needs personal human contact; either face to face or by telephone. Specialist support such as this, is lacking. We may be trying to educate our own GPs but in reality, we may be the first patient or carer affected by CLL, that they have seen and they may never meet another.
I do agree with Neil, that there is a vast knowledge amongst the online communities, that we should be tapping into. I would really welcome more Clinicians becoming involved.
Earlier today, I had another response to my February blog, about living in a bubble and a suggestion was made that we use our pooled knowledge here, to produce some kind of 'keycard', which could contain information about CLL and could be handed to any health care professionals we meet, who know nothing of CLL and would help to avoid the millions of times we have to explain what it is.
Yes we need to remember that the CLL community does include many members that may not have internet access, given that the median age at diagnosis is supposedly 72. I often wonder how old that statistic is!
You've also inspired me to scan the CLL information card that the Australian Leukaemia Foundation produced to hand to GPs. I'll post that in a blog.
Hi Sparkler, you have raised interesting difficulties. Interesting hand out Neil
Cancer incidence by age figures and information from cancerresearchuk.org/cancer... show how small a proportion of all cancer the overall NHL and Leukaemia populations are. Calling CLL the most common Leukaemia diagnosed in adults may create an illusion that it is more common than it really is as CLL/SLL only makes a small proportion of these cancer types. It was explained to me that if Wembley stadium is full there may only be a couple there with CLL. If older football fans were able to travel there may be more.
I believe the SEER stats still support the median age of diagnosis at 72. “CLL incidence is 4.2/100,000/year. The incidence increases to >30/100,000/year at an age of >80 years. The median age at diagnosis is 72 years. About 10% of CLL patients are reported to be younger than 55 years.” .Patient .co.uk
There are many more older CLL patients than younger. But a disproportionate number in on-line communities are younger. Is this because of computer literacy access issues or could there be other reasons too?
I noticed while looking at the clltracker.co.uk/ information the graph of the age of diagnosis of the on-line group showed numbers fell away sharply at the age of 59 instead of increasing. This very visibly highlights the discrepancy.
However I have also noticed a similar discrepancy in the average age of people attending patient meetings. It is a lot younger than the median age of the CLL population. Could willingness to travel, mobility issues, age and priority differences play a part?
I know my own elders in the family are silver surfers at 80+, IT literacy is rapidly increasing in the older age group. Perhaps more care sent out into the community combined with better IT support and interaction from home with clinical support will benefit the missing population? These are interesting developments.
I think the W & W period is misunderstood by both patients and Dr's. For patients its a time to find out as much as possible which they cannot do until their condition is explained correctly by a professional or someone who know's what they are talking about (CLL Support Group). When Dr's become patients then their views change completely its one thing giving advice but another actually living it. The difference in possible outcomes (for some CLL will never develope to needing any treatment for some they may die within a year) makes CLL hard to define and that's part of the problem with W & W. Post treatment I think its easier to provide help. I have attended a pilot survivorship course which I very much enjoyed and found very useful but no more useful than attending the CLL meetings or this web site. The more options that are available and that people are aware of then all the better.
I suppose any chronic illness has similar problems as CLL. Sympathy fatigue sets in, also I've seen the confusion in people's faces when they see you on a good day bouncing around, not knowing that yesterday you were flat on your back exhausted with flu like symptoms. I can understand the confusion, I feel it myself. We just dont fit in to the normal cancer pattern, diagnosis, treatment, hopefully survival. Our CLL pattern requires long term occasional support - a lot harder to identify the 'how' and the 'when'.
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Survey for CLL patients having taken Venetoclax or Acalabrutinib
I don't want to start treatment ever, however I know that I probably will at some point.
COVID-19 among fit patients with CLL treated with venetoclax-based combinations
