Recently the editor of a submitted manuscript made some important points. For future reference, can anyone suggest information that ought to be captured when evaluating affective responses related to cancer survivorship? Assume the broader definition of "survivorship" is being used to include all those still alive following a cancer diagnosis, that the type of cancer diagnosed is known, and that the affective measures being evaluated may be of any type (QoL, depression, anxiety, etc).
According to our clinical experience working with cancer survivor patients and chronic pain cancer in particular at Mexico City hospitals , we have found the saliva IL-6 as an important marker of not only depression, we would prefer to call it emotional negativity state wich include: anger, sadness, and "social pain" . Our findings suggest us that in order to asesss the emotional and sensorial status ( inflamation response) of a cancer chronic pain patient it would be useful beyond the usual medical markers of health it would represent some kind of improving if saliva I-L 6 can be recollected. by the way we still prepraing our dat for publication ( first on spanish)
It seems to me from experience of cancer patients that the ability and the time taken to return to work is an important factor to consider. The emotional aspects of changes in cosmetic appearance in relation to return to work is also of huge importance, highlighting the need for pre-operative counselling towards coming to terms with a different person post surgery, e.g. than before, even if this only temporary. These are important very strongly felt mediators for women.
Pain, fatigue, and other symptoms and side effects are often related to depression, although in these symptom clusters it can be hard to determine if one symptom is causing another. Elevated cytokine levels can play a role in many symptoms.
While our work is focused more on people living with HIV and AIDS, we also deal with many cancer patients and see many similarities in their behavior.
Based on experience from 50 thousand adults and children who have been though our program, I would say a laughter breakthrough - the ability to laugh heartily at themselves and their situation - clearly distinguishes victims from survivors.
The changes that occur are remarkable and include dramatic reductions in stress, depression and self pity; increased adherence to medication and treatment; improved relations with family, friends and caregivers; improved self care, confidence and esteem; healing of emotional trauma; and increased attendance of support groups.
The program I am referring to - Healing with Happiness - combines education, self discovery, Aerobic Laughter, and behavior change training and is administered by care workers in groups and one-to-one after one day of training.
Really interesting question. As a cancer survivor and one who does research with cancer survivors, I think that time from diagnosis is important as well a time from finishing primary treatment. We have also done a lot of work with self-efficacy for managing cancer survivorship and find that both baseline efficacy and changes in efficacy are associated with future depression.
The pain, fatigue, depression connection is interesting. The more I work with this I see it as a cycle each feeds into the other making all worse. At the same time if you can break this cycle at any point, all tend to get better.
One last thought and that is that I think sleep is related to almost everything and will probably be found to be a really important variable.
Am just completing study of the distress and coping of men with cancer in provincial New Zealand. Found cataclysmic loss of control early in cancer experience, followed by 'regaining footing' then working through to a point of regained equilibrium. Depressed men seemed to get stuck along the way e.g. loss of sexual potency and no idea that there may be medical and psycho-social ways of addressing that, so have run into a dead end. Consequent loss of satisfaction in life, masculine self image and, crucially, possibly also the relationship they most depend on. Information that is relevant, accessible and timely is the key to assisting men finding their footing and beginning the work of regaining sufficient control in their lives. Best wishes with your work.
Hi Alan,
The issues may include access to appropriate pyscho-oncology care - during treatment and post treatment (and survivorship). I acknowledge and value the submission by Heather Heron-Speirs whose focus is on a group who do not fare well post cancer diagnosis.
Late effects is the clinical domain for oncologists who wish to follow up post treatment the impact of cancer on their patients. Consideration of affective responses is important where choices regarding treatment progression may be affected by the capacity of the patient (and perhaps the patient's close advisers) to participate meaningfully in this dialogue or much earlier advice about cancer. The capacity to function as part of a family, meet obligations and expectations that affirm self efficacy and role are aspects of patient's lives that falls outside the gambit of late effects but may better help understanding of depressive symptoms for those isolated and affected by the prospect of cancer or a cancer diagnosis. Findings of research I have undertaken suggest that having a social or culturally consistent goal commensurate with seeking advice, seeking early diagnosis, seeking effective treatment and where appropriate watchful follow up may helpfully frame the mediators you wish to identify.
Please also not that with the people I have talked to about cancer, many diagnosed and treated for cancer and family members, they have wished not to be defined by the diagnosis and/or treatment. For some the notion of survivorship, being identified as a cancer survivor was not helpful in the time period post treatment.
typo error in last paragraph. It should read
Please also note that with the people I have talked to about cancer, many diagnosed and treated for cancer and family members, they have wished not to be defined by the diagnosis and/or treatment. For some the notion of survivorship, being identified as a cancer survivor, was not helpful in the time period post treatment.
Thank you all, especially Benjamin and Karen. At the moment I'm focusing on pain, fatigue, and forms of inflammation. John and Heather, I may add a question soon regarding what ought be included in a cancer survivorship plan in addition to treatment summaries/plans.
The word ''CANCER'' creates disturbing factor for the patient suffering in this disease.Everybody want to leave happy ,healthy life but either certain action of our previous life or even present life unexpectedly create a dark crowd in rosy surrounding .This are ofcourse the way of life.
Humanbeing are lucky enough that we have the storage of unconscious mind duly supported by our sub conscious mind .In between our sub conscious mind is our master every action for it cause for positive thinking -a right type of action ,full supported by our power of prayer ,meditation.
With this we may keep our mind calm & quiet under serene environment .In this circumstance we should state way instruct to help me in my recovering & while taking we should instruct our mind according .This may help suffers to meet the challenges of his health confidently .
Speaking as a 'survivor' (I don't like that term - it has negative connotations of personal blame for treatment failure), from personal experience, things such as the type of cancer (and thus the long-term side-effects of treatment - weight loss and trouble eating in my case, and I know others who have trouble talking, trouble lifting and carrying, and previous posters mentioned other specific side effects such as impotence) and worry about recurrence may also play a role. Worry about recurrence could go two ways though depending on how it is interpreted by the person - either a fear that life is over and depression about death or deciding to 'live for now' and enjoy the time that there is left. I believe many cancer 'survivors' appreciate the value of life more following diagnosis - this is certainly something that comes through in the qualitative evidence (see chapter 5 of Crossley, M. (2000) Rethinking Health Psychology. Buckingham: Open University Press). There is also some evidence out there to suggest that stigma in certain types of cancer may also be important. Guilt associated with 'survivorship' may also play a role. I would suggest examining the qualitative literature on experiences of people who have had cancer, to provide food for thought as to what potential mediators can be examined. Also contact Godze Ozakinci (you can tweet her - @Godze786) - she has a research background in cancer from a health psychology perspective.
Thank you Emma. I will do as you suggest. As for your concern regarding stigma etc. about survivorship: when pressed to discuss my own experience, I usually say something like "... and as you can see, cancer did not survive ME." That generally puts cancer in its place, regardless of the long-term effects.
That's very interesting. I was thinking of something slightly different when I mentioned stigma - I had in mind the stigma attached to certain forms of cancers (e.g. lung cancer, head and neck cancers) that are related to lifestyle behaviours - people feel stigmatised because they feel personally responsible. I have tweeted and retweeted such research (@EmmaEversonHock) in the not too distant past but cannot recall the reference at the moment. If people feel they are being blamed (by society at large) then I would have thought that would mediate depression.
Guilt may play a huge role - outliving or receiving a more positive prognosis than others with the same or similar cancers and the same or similar treatment could also lead to negative affect.
As I think about this I think there is another factor. In our research, the survivors who benefited most from our program were out two years from treatment. This was an on-line program with lots and lots of posts among survivors. One of the themes that we saw time after time again, especially among those well out of treatment was that people they had expected to help did not, and they were mad. They mourned the loss of friends/family members/trust. I do not have data to publish on this but think it may be more important than we think.
Thanks Kate. Absolutely - and in a more general sense there just doesn't seem to be much out there with respect to unmet expectations regarding social support whether emotional, instrumental, etc. To add to the literature, in an upcoming study on survivorship I'm including a section on guilt and expectations. Maybe my own Great Expectations for this aspect of the study will be put to the test!
I also would add that to investigate this field you need to have very detailed and specific information on treatment variables., Also it is important to know of prior depressive episodes and/or treatment. Further medications used in combination with the cancer treatment may play a role in the association studied. We have carried out some studies on the issue in which we miss this kind of information. Have a look on Dalton SO published in JCO in 2009. In this study we investigated the risk for depression as measured by admissions to a psychiatric ward. Interesting data.
Hello All and thank-you for your thoughts. You seem to be alluding to the (can be said a few different ways - ) stage of cancer diagnosed. Affective responses downstream from staging, then subsequent treatment and yes, stigma associated with the cancer seem driven to some extent by how negative the cancer prognosis is. Dr. B-E emphasized this above when she pointed out that "Pain, fatigue, and other symptoms and side effects are often related to depression" - aren't these a consequence of the severity of the cancer diagnosed? I'm thinking more and more that a cancer diagnosis "resets" any preexisting tendencies we have towards depression or any other affective manifestation on the biological & psychosocial levels. I find myself disregarding studies of pre-cancer tendencies towards this or that affective response because a cancer diagnosis changes the rules so to speak. It ultimate drives our perceptions of pain, fatigue and other symptoms.
And Emma, thank you for your insights. As a second-time cancer survivor now, it seems to me that stigma takes on significance only to the extent we allow it - yes it may be dependent on how we respond to cancer of one type or another, but there is still an important element of self-definition involved in that response. We may be unable to control the attachment of stigma because of the type of cancer diagnosed, but we can certainly control any influence that attachment may have on us. So I see the stigma issue as a rather personal struggle between the survivor and the "forces of stigma" so to speak.
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