Seeking article

[Seven6]

hi, I saved an article about the psychological effects of chronic progressive cancers such as CLL. It was posted sometime ago and I just decided to read it but cannot locate it. It was by somebody in the medical profession. Anybody have any ideas?

All the best

Seven6

[Newdawn Administrator]

The post on here from Hairbear has some excellent links to the subject Seven. Not sure if it's the specific article you were looking for however.

healthunlocked.com/cllsuppo...

Newdawn

[Seven6 in reply to Newdawn]

Hi Newdawn

Thanks for your response. The article I thought I saved was written by someone in the medical profession comparing CLL with other cancers and how CLL affects people in a different way to other cancers. Think it was a link in a post some weeks ago. Always lose the one you want to read!

I will look at the articles you sent.

Hope you are keeping reasonably well.

Thanks again

Seven6

[Newdawn Administrator in reply to Seven6]

Sorry I can't help then Seven, I don't recall seeing a post like that on here written by a medic but I hope someone else can signpoint you to it. It's always frustrating when we lose an article that was useful

I did a pinned post 2 years ago, not written from a medical perspective but which describes why I feel CLL feels different to other cancers. Obviously different from what you're looking for but if it helps in any way, here it is;

healthunlocked.com/cllsuppo...

Thanks for your best wishes which are returned to you. I have my haematology consult this afternoon which is always an anxious time.

Newdawn

[Firefly14 in reply to Newdawn]

Hi Newdawn,

Hope you got on ok today x

[Cllcanada Top Poster CURE Hero]

I have found these short video clips insightful... perhaps broader range of topics than you want...

healthtalk.org/peoples-expe...

~chris

[Seven6 in reply to Cllcanada]

Hi Chris

Thanks so much for your response. The actual article I think was a link in a post, I saved it but now can't find it. Typical when it is something you wanted to read. I will look through what you sent me.

It is so amazing to be communicating from Canada to England.

Thanks again

Seven6

[jangreen]

Hi I do remember the article. It mention something about the percentage of people who still worry about their cancer compared to Cll. It was thought to reflect the unknown course that Cll can take. Sorry I don't have the article logged. Best wishes

[Seven6 in reply to jangreen]

Hi Jangreen

I was beginning to think I had dreamed up this article so it is reassuring you remember it. Maybe someone will have saved it.

Thanks for your response

Seven6

[Hidden]

is this it?

cancer.org/treatment/su...

posted by Chris 4 months ago

[Hidden]

I'll try again

cancer.org/treatment/surviv...

[Hidden in reply to Hidden]

Please note that Chris put a warning by this link saying that it wasn't suitable for some members and was depressing.

[Seven6 in reply to Hidden]

Hi mudlark

Thank you, I am not sure whether this was the article, I did not find it depressing and am OK. It doesn't seem to touch on the watch and wait period and like most articles concentrates on treatment and recurrence. I think it is the "no treatment" that is difficult to understand. Initially for the person diagnosed as we are fed "early diagnosis and treatment is the best way" and for others to understand.

Thank you.

I found some of it interesting.

Seven6

[Cllcanada Top Poster CURE Hero]

Here is the origan thread, is it my friend Dr. Brian Koffman ( cllsociety.org ) you are referring to? He has CLL...

healthunlocked.com/cllsuppo...

There is also a doctor with CLL who has written a number of blog posts for Patient Power...

and this...coping with Watch and Wait

patientpower.info/video/cop...

[Seven6 in reply to Cllcanada]

Thank you for your response. I am really getting some reading to do and everyone is so helpful.

Seven6

[HAIRBEAR_UK Founder Admin]

This Oxford study group paper with CLL Specialist Prof Andrew Pettitt has done the rounds a few times and does focus on the issues experienced by people on watch and wait including the emotional and psychological challenges. Many have found it helpful and have shared it with their doctors.

One of the interesting observations of this study is that " Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment;" one of the reasons is as you mention Seven

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor–patient communication onlinelibrary.wiley.com/doi...

The CLLSA QoL survey does show how emotional issues impact very negatively on the W&W population Anxiety was the most frequently reported emotional issue with 85% of respondents reporting this issue ukcllforum.org/downloads/20...

Part of the reason for putting together and posting the below information, help and support resources is that lot of us are living not just with a slow growing/developing longterm physical condition that many don't understand, we may require help more often with the emotional and psychological issues than is realized.

healthunlocked.com/cllsuppo...

Nick

[Seven6 in reply to HAIRBEAR_UK]

Hi Nick

Thanks for some really interesting links and I look forward to reading them. My journey has opened up a deep interest in this subject, the whole concept of chronic leukaemia being something I had never heard of. I also now realise many others have no knowledge or understanding of this illness.

Thanks again.

Seven6