Archives For The Nation of Cancer

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As most of you may know, we are almost finished with the latest new six-episode installment of the show ‘The X-Files’. For the uninitiated, ‘The X-Files’ is about a fringe group of the FBI that is tasked with investigating alien abductions and beings as well as other unusual phenomenon. The two agents, Fox Mulder and Dana Scully, over time, believe that there is a larger government conspiracy to cover up the aliens, the abductions Continue Reading…

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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.

Now

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!

Personal Experience

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.

Proposal

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>

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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…

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It has been a couple of weeks since my last post.

There has been much going on in my little microcosm in a corner of The Nation of Cancer during the past four weeks.

First of all, my Aunt Marion of whom I wrote about in my last post, was diagnosed and has since died of metastasized lung cancer. From the time of actual diagnosis to hospice to death was less than three weeks. It was quite a bit to deal with for all concerned both near and far. Her funeral is Monday.

Yes, she was 84. She lived three years longer than the U.S. average life expectancy. But while living those amazing 84 years, she battled bladder cancer, uterine cancer and lung cancer previously. She had much of her end-of-life plan in place and most of her wishes were made known to her loved ones. She tried to sing ‘Somewhere, Over the Rainbow’ less than 48 hours before her death. She reached to hug her dead grandson less than 24 hours before her death. She waited for her eldest daughter to leave the room, and then she died. Continue Reading…

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I am a great fan of the Charlie Rose show. On December 13, 2012, he hosted the Brain Series 2, Episode 12, entitled ‘Post Traumatic Stress Disorder’, (PTSD). His guests included Dr. Eric Kandel, Nobel Laureate and Professor at Columbia University, Murray Stein, MD, MPH from UC San Diego, a professor and Director of of the Anxiety and Traumatic Disorders Stress Program and other medical professionals and researchers.

The premier guest on the show to expound on the personal experience of PTSD was Retired Lt. Colonel John O’Brian. He is a veteran of the Iraq and Afghanistan wars, and was described by Charlie Rose as an American hero, with 25 years of service, a recipient of the Bronze Star, a Purple Heart and the Combat Action Badge.

Dr. Kandel went on to describe the ‘fascinating’ disorder; PTSD is unique because they understand the cause. The cause of PTSD is a physical threat to oneself resulting in tremendous fear and helplessness. It causes severe anxiety, panic, depression, recurrent nightmares, bad, frightening thoughts, helplessness, and avoidance. It also is the ongoing fear that the trauma will come back and is going to happen again Continue Reading…

The Economy of Cancer

Let me begin by saying that as a Cancerian I’m grateful for all of the dedicated professionals and other people employed by The Nation of Cancer. Obviously, I am alive, thanks in large measure to their work!

I’ve spent twenty years being on the front line of the war called Cancer. Every year I see multiple doctors, had multiple tests, bi-yearly scans and more. During this time I also had close to 20 surgeries. There hasn’t been a year in two decades, where I haven’t ‘maxed’ out my out-of-pocket expenses and I have GREAT health care insurance. If I didn’t have great insurance, well, almost certainly, I would have long been dead.

In spite of having GREAT insurance, the total heath care billed each year ranged between $10,000 before insurance adjustments to well over $500,000 in some years. Even with the great insurance, my out-of-pocket expenses (not including alternative treatments, supplements, therapists, and other assorted necessities) have been in the thousands of dollars per year. And I am just one person.

In The Nation of Cancer there is plenty of money to be made in service to its citizenry. And for now that may be a good thing. Even though in the developed countries of the world, the yearly mortality rates from cancer are decreasing due to awareness campaigns, early detection and treatment, the incidence of cancer worldwide is increasing, and is now the leading cause of death.

Under the current model, this is good for business! This model has each individual as a potential annuity stream of income for follow-up care as well as for the possibilities of recurrence and/or secondary cancer diagnoses. Since this model focuses on early detection and ‘awareness’, if it turns out that that the cancer is detected when it is too late, our society will pull out all stops and spend a great deal of money to possibly extend life that is measured in months not years. Again this is good for business!

The Industry of Cancer

Everyone needs to make money, right? There is HUGE money to be made in The Nation of Cancer. Unfortunately while in the service of ‘treating’ cancer rather than curing cancer, why would the players in this industry want there to be a cure?

Here are some interesting statistics on the cost of cancer care in the US (again dated information) but it can only be worse now. See:

http://www.cancer.gov/aboutnci/servingpeople/cancer-statistics/costofcancer

It would be impossible for me to include all the stakeholders in the supply and care chain that have their hand in the cancer pie, so I will just focus on the top money makers. Continue Reading…