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Needs Persist after Cancer

Posted 1/15/2015

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  If your days of active cancer therapy are behind you, yet you still feel cancer heavy on your shoulder, you are not alone. Many people experience prolonged physical, emotional, practical, and financial needs or problems that are directly related to their cancer experience. In fact, many people can't deal with most of these issues during active treatment, and lots of things are shelved until "later". The problem with that approach is that all those things are growing on the shelves and now come laden with both the principle and the accumulated interest.

  There have always been many women who never call me until sometime after treatment ends. The time frame varies enormously; I hear from some people a few weeks after and others several years later. In all cases, the time has only then arrived when the individual feels able to deal with the feelings or the problems. During treatment, it is often all you can do to manage the appointments and the side effects and the unrelenting job of being a cancer patient. Emotionally, the after effects look a lot like PTSD, while the practical/financial problems are associated with reduced or missed income, medical bills, other expenses that were larger than usual.

  For more than twenty years, I have had a wonderful group for women who have completed therapy for breast cancer. For a long time, I actually had two such groups as there were too many people to comfortably fit into one room or one group time. I think that more than half of the women who have attended this group over the years were women whom I did not know until this period of their cancer experience. Here are a few examples of women whose cancer-related issues persist (all names have been changed):

** Phoebe took a medical leave during the 8 months of her cancer treatment. She stayed in touch with her employer throughout that time and was always reassured that she would be welcomed back when she was ready. Instead, two weeks before her planned return to work, her position was eliminated. Several years later, this continues to be the central cause of her daily difficulties. She has not been able to find a new job and has, instead, pieced together a number of part-time things. Her income is greatly reduced, and she has been forced to move to a less expensive apartment. She also feels that her energy level has never returned to pre-cancer normal, and she also feels that her memory and thinking are less sharp. Multi-tasking is now tough.

** Claire had bilateral mastectomies almost twenty years ago. I never met her until at least 15 years after her surgeries. It was only then that she felt able to process the emotional losses and issues related to her cancer diagnosis and the surgeries. She experienced many surgical side effects, needed lots of needed physical therapy for years, her marriage came apart, and her financial stability was wrecked.

** Ruth was diagnosed with an aggressive form of ovarian cancer and underwent months of intense chemotherapy. Five years later, she is (unexpectedly) healthy and physically well, but she has become very depressed over the past year as she has begun to process her experience and to try to understand her current situation. She feels deep survivors' guilt as many "cancer buddies" have died.

** Helen is an artist who has not been able to do her best work since her diagnosis several years ago. Her chemotherapy included big doses of Taxol that caused severe neuropathy that has persisted. She cannot handle her tools correctly and also feels that her creative brain has been stifled.

** Many men and women have come to talk with me, months or years after treatment, about sexual issues. Many men who were treated with surgery or radiation for prostate cancer remain impotent, and many women never regain their pre-cancer libido.

  A study just released in the journal, Cancer, talks about this ongoing burden. As many people live for many years after cancer, more attention is being paid to survivors' issues, and the news is not always good. Here is an excerpt from a Medscape articke about the study and then a link to read more:

Cancer Survivors Face Ongoing Burden of Unmet Needs
Liam Davenport

Dr Burg's team took on the task of examining 1514 responses from cancer patients who had survived for 2, 5 and 10 years who had responded to the following open-ended question: "Please tell us about any needs you have now as a cancer survivor that are not being met to your satisfaction."
The mean age of the respondents was 62.5 years, 34.6% were men, 43.4% had breast cancer, 18.0% were nonwhite, and 40.0% were 2-year cancer survivors.
The most frequent unmet need, reported by 38.2% of respondents, was physical. This was followed by financial
problems (20.3%), education and information needs (19.5%), and personal control problems (16.4%), which include needs related to an individual's ability to maintain autonomy in terms of the physical self (sexual function, evacuation, and ambulation) and the social self (ability to make plans and socialize).
Other unmet needs identified were system-of-care problems, resource needs, emotional and mental health problems, social support needs, and societal concerns related to the patients' cancer experiences.


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