In March, like millions of people, I sat enrapt watching the three-night premier of the documentary by Ken Burns, “Cancer: The Emperor of All Maladies.” As you know cancer is very personal to me. I have “battled” and “survived” the diagnoses of multiple tumors for more than twenty years. I am not a doctor or scientist but a “career” cancer patient. I have had different bilateral breast cancers, pancreatic Continue Reading…
Archives For Research
As most of you know, my daughter had another tumor removed last July. This was her second occurrence of leiomyosarcoma. She had a liver resection. Two institutions opined that it could not be determined if it was a new primary tumor or Stage IV as the cells of leiomyosarcoma were exactly the same. She was 6 months shy of her 5-year anniversary.
As a parent, at first I was first in warrior mode, then caregiver mode and then when the dust had settled became completely distraught. I have complex PTSD and this event was a trauma trigger on the magnitude of an 8.0 earthquake collapsing the entire house. I went into the usual grieving over whether she would live or die. I had to wrestle with Can I stand by and watch my daughter die from this? Would I rather be dead? Even after all I had been through, fighting to live, living through my first husband’s death, could I do this again? I asked myself these questions and more. Continue Reading…
An issue or an unmet need has come to my attention due to some recent personal experiences. For the purposes of Cancer, The Nation of Cancer, and the treatment of cancer there should be a new age group.
Currently we basically have three cancer groups: Childhood Cancer, Young Adult Cancer and Adult Cancer.
The group Childhood Cancer includes babies up through adolescence, or age18. One can say with complete certainly that the needs of children and adolescents are unique to their group demographic. They are still physically growing; their brains are not fully developed. They are not legally responsible for their decisions. While they may be consulted, others, usually parents or other adults will decide what is to be done regarding treatment and care. And by equal measure the responsible adult will shoulder the financial responsibilities. Among other things, this group requires different doctors, drug dosages, social workers, case managers, and different support in general. Their training is even age specific. One could argue however, that this age group should be broken into a narrower age range.
The next group is the Young Adult group of cancer patients. These are people in their late teens up to what? 30? 35? The needs of this demographic are unique as well. Some of these patients are in pursuit of their education, starting careers or businesses, dating, forming relationships, and starting families. This group is starting out on the adult journey of their lives. Then cancer hits, the journey is suspended. Changes in body image, trust in one’s body, fertility, desirability, loss of time, wages, starting over again, are all issues. ‘Stupid Cancer’, ‘First Descents’ and other groups support some of their needs but not all needs are being met. There are financial issues, insurance issues. The issues of autonomy vs. dependence are huge.
The demographic of the Adult Cancer patient begins where Young Adult ends until the developmental stage of old age and herein lies the problem: We are missing the stage between the group Young Adult and the older age adult!
In my personal experience, at 36 years old and even more than a decade later, I did not have much in common with many people in my ‘Adult’ cancer cohort. Most people in the chemotherapy treatment rooms, oncology floors in the hospital and in the support groups were people much older, patients in their sixties and beyond. Other than having cancer, I really didn’t have much in common with most of them and where they were in their lives. I was their daughter’s age, my children, their grandchildren’s age and so on.
I was a Young Adult cancer patient if you stretched the age group to 36 when cancer first hit. I was working full-time, was already having some career success, and was the mother of a toddler and a preteen. I was very involved my children’s schools and activities. I was married, had a mortgage, my salary was depended upon. In reality, I was too old to be a young adult. My parents were becoming elderly. I was too young to get cancer.
I propose a completely new group:
THE PRIME OF LIFE CANCER GROUP
This is the group of adult cancer patients say between 30 or so and 45 or 55. These patients are old enough and experienced enough to know who they are. They may own homes, be married or in other committed relationships. They may have children. They may be caring for these children as infants, or while the children are in school, or possibly starting college. They are well on the way up the ladder of their career. They have responsibilities. They have very busy lives.
This was the age when I had five different cancers, was juggling a job, chemo, working and raising kids. This group is not getting enough support. For example for many, too many decisions need to be made: medical leave vs. career, childcare issues during treatment, after school activities. How does one manage it all? What about cancer’s effect on sex and sexuality? What about dealing with cancer’s effect on the children? What about cancer’s effect on the non-effected spouse or partner? This is a funny term since they are absolutely affected. (affect/effect, who cares, on a roll here) What about their career? Dreams? Who picks up the slack and shepherds the family through the crisis? What kind of unique financial needs does this group have? I would say most certainly as a group they are unique unto themselves vs. the needs of a 22 or a 55 year old. What do you think?
The cancer patient in The Prime of Life Cancer Group currently is falling through the cracks and is held up by friends, family and community support. The problem is the friend group is also in their prime of life and they are busy too. Family and the community can help but it is not structured by any means. So as the cancer patient you may be reduced back to your younger days of the Young Adult group or the Older Adult patient group, not really able to relate to either.
Please share your experience if you find any of this true. Please share if you know of services directly and specifically helping the cancer community in The Prime of Life Cancer Group. If you can think of more issues please share and I will post on the blog. (Since not everyone is on Facebook, I prefer comments on the blog). Please share this if you think there is a HUGE GAP in cancer care and support for people in The Prime of Life Cancer Group! Unfortunately, I know too many people with cancer in this age group.
Is there a better name? What other groups of cancer patients do you think have unique demographic needs that are not being adequately addressed? Do you think cancer demographics should be more finely stratified to appropriately, successfully and inclusively address the needs of all ages?
Photo credit: Copyright: <a href=’http://www.123rf.com/profile_Tawng’>Tawng / 123RF Stock Photo</a>
On April 14, 2014, I was very excited when I heard the news that Toms River: A Story of Science and Salvation by Dan Fagin won the 2014 Pulitzer Prize for general nonfiction. That day, I tweeted to congratulate Mr. Fagin and I was excited when he tweeted his reply ‘Thanks’. I tweeted to my followers that this was another win for The Nation of Cancer. The Emperor of All Maladies: A Biography of Cancer by Dr. Siddhartha Mukherjee had just won the same award in 2012! Continue Reading…
This week is the annual meeting of the American Association of Cancer Researchers (AACR). My twitter news is all abuzz about what is going on at this meeting. For example, a new ‘Dream Team’ was announced for Pancreatic Cancer and HPV (Human Papilloma Virus – a causal factor in cervical cancer and now overtaking other causes as the most prevalent cause of head and neck cancer).
This is TED for cancer. Understanding and curing cancer is one of the greatest challenges in our lifetimes AND we are on a real-time cusp of understanding this complex puzzle.
I tell you this is where it is happening! This is the place to be! I want to go next year! Yeah, I know ‘what a ‘wonk’’. This is what it must have been like to work for NASA when we landed on the moon. My father worked on the lunar module when he worked at Grumman in the 1960’s and early 70s. He was part of that big thing – the moon shot. I must have inherited his ‘wonk’ gene. I’m fine with that. It is GREAT! Continue Reading…