Different Cancers, Different Journeys: One Problem With Lack of Public's Education

Started by Leida, June 22, 2015
5 replies for this topic
Leida

Member
558 Posts
Posted on
June 22, 2015
After I had cancer (breast cancer and melanoma), I wrote a book to help other cancer survivors. As a motivational speaker and a published writer, it was my way to turn bad events into something good to help fellow cancer patients. My book was based on my personal journaling and my research. I was not a doctor or a psychotherapist. I was and I currently am a cancer survivor who wants to help fellow cancer survivors and their loved ones.

It seemed that the doctors were there to treat the physical issues of cancer but that there was a shortage of resources to address the mental and emotional aspects of cancer — the uncertainty, worry and lingering side effects from treatment. I wrote the book I wished someone could have handed to me when I was first diagnosed with breast cancer. Now I am worried.

My breast cancer and my melanoma were stage 1. This means they were caught early with pretty good prognoses for long-term survival. I had surgeries, chemotherapy, radiation and hormone treatment. Of course, my fear is that one of the cancers could come back with a vengeance or a third cancer could appear. I also struggle with side effects from treatment. That said, even though the odds are pretty good, I could still find myself on the other side, the wrong side, of the probability equations with cancer, and having two cancers probably doesn’t help my overall cancer prognosis odds.

Learn and listen to help a cancer survivor in your life

Not all cancers have a good prognosis, and some patients with a poor prognosis have a good outcome and vice versa. Every day, people find themselves on the wrong side of the probability equation and are facing a higher likelihood of a poor outcome. This is a different set of circumstances that I have not yet experienced and I find myself poorly equipped to offer help. I wrote my book based on my own unique cancer experiences. I offered the mental and emotional tools that I had researched and learned and applied on my own cancer journeys.

As I start to speak publicly about my cancer journey at churches, hospitals, and for medical and other organizations, I am startled by the number of people coming up and wanting to buy my book for someone who is at the point of end-stage cancer. I try to talk them out of getting my book or I strongly urge them to read the book themselves first to be sure it would fit the person they intend to help.

An important suggestion to help a cancer survivor

Read the book, any book you buy, yourself before you hand it to your cancer survivor. I struggle with how I make my book available and known as a resource to people with cancer and yet not have it in the hands of people who are facing different issues and might not find the book helpful.

End-of-life cancer issues and struggles are very different from my own cancer experiences so far — the trials and studies, the long long-term active treatments and side effects, the issues — all are different. My book is geared for someone newly diagnosed, in active treatment or within a few years after active treatment — any of those scenarios that have a somewhat hopeful prognosis — a recognized likelihood of a possible good outcome.

I think part of the problem may be the lack of awareness of the general public about all the different kinds and degrees and grades and stages of cancer that exist. Do they know? Who is supposed to educate them?

I remember when I got my second cancer, melanoma, I knew right away to ask abou the specific type, stage, and grade of disease. Basal cell carcinoma and melanoma are not the same type of skin cancer, and also the stage of the cancer is a critical piece of the puzzle. These things all factor into treatment and prognosis.

How can we educate the public? People mean well in wanting to help people around them who face a cancer diagnosis, but unless we, as cancer patients and survivors, are willing to clarify what we have and what kind of prognosis and issues we are facing, I think it is hard for people around us to help. Ignorance can create a situation where someone could unintentionally do more harm than good.

I would like to hear your thoughts.
Report

Page 1 of 1 1

BarbaraTako

Member
0 Replies
Posted on
June 22, 2015
After I had cancer (breast cancer and melanoma), I wrote a book to help other cancer survivors. As a motivational speaker and a published writer, it was my way to turn bad events into something good to help fellow cancer patients. My book was based on my personal journaling and my research. I was not a doctor or a psychotherapist. I was and I currently am a cancer survivor who wants to help fellow cancer survivors and their loved ones.

It seemed that the doctors were there to treat the physical issues of cancer but that there was a shortage of resources to address the mental and emotional aspects of cancer — the uncertainty, worry and lingering side effects from treatment. I wrote the book I wished someone could have handed to me when I was first diagnosed with breast cancer. Now I am worried.

My breast cancer and my melanoma were stage 1. This means they were caught early with pretty good prognoses for long-term survival. I had surgeries, chemotherapy, radiation and hormone treatment. Of course, my fear is that one of the cancers could come back with a vengeance or a third cancer could appear. I also struggle with side effects from treatment. That said, even though the odds are pretty good, I could still find myself on the other side, the wrong side, of the probability equations with cancer, and having two cancers probably doesn’t help my overall cancer prognosis odds.

Learn and listen to help a cancer survivor in your life

Not all cancers have a good prognosis, and some patients with a poor prognosis have a good outcome and vice versa. Every day, people find themselves on the wrong side of the probability equation and are facing a higher likelihood of a poor outcome. This is a different set of circumstances that I have not yet experienced and I find myself poorly equipped to offer help. I wrote my book based on my own unique cancer experiences. I offered the mental and emotional tools that I had researched and learned and applied on my own cancer journeys.

As I start to speak publicly about my cancer journey at churches, hospitals, and for medical and other organizations, I am startled by the number of people coming up and wanting to buy my book for someone who is at the point of end-stage cancer. I try to talk them out of getting my book or I strongly urge them to read the book themselves first to be sure it would fit the person they intend to help.

An important suggestion to help a cancer survivor

Read the book, any book you buy, yourself before you hand it to your cancer survivor. I struggle with how I make my book available and known as a resource to people with cancer and yet not have it in the hands of people who are facing different issues and might not find the book helpful.

End-of-life cancer issues and struggles are very different from my own cancer experiences so far — the trials and studies, the long long-term active treatments and side effects, the issues — all are different. My book is geared for someone newly diagnosed, in active treatment or within a few years after active treatment — any of those scenarios that have a somewhat hopeful prognosis — a recognized likelihood of a possible good outcome.

I think part of the problem may be the lack of awareness of the general public about all the different kinds and degrees and grades and stages of cancer that exist. Do they know? Who is supposed to educate them?

I remember when I got my second cancer, melanoma, I knew right away to ask abou the specific type, stage, and grade of disease. Basal cell carcinoma and melanoma are not the same type of skin cancer, and also the stage of the cancer is a critical piece of the puzzle. These things all factor into treatment and prognosis.

How can we educate the public? People mean well in wanting to help people around them who face a cancer diagnosis, but unless we, as cancer patients and survivors, are willing to clarify what we have and what kind of prognosis and issues we are facing, I think it is hard for people around us to help. Ignorance can create a situation where someone could unintentionally do more harm than good.

I would like to hear your thoughts.
Report
annon123456

Member
0 Replies
Posted on
June 25, 2015
It is also very different when you have a cancer with no cure or one that is potentially curable. Breast cancer #1 2003, took about 4 years not to think about it every single day. Breast cancer #2 a sharp set of eyes at Seattle Cancer Care thought they saw something. Couldn't find it with an ultrasound so figure it was artifact. 2010 finally shows up on a mammogram. 5 tumors some that are DCIS and some that are invasive. Follicular non-hodgkin's lymphoma (fnhl) - 8 months later in 2010 (with "B" symptoms for the previous 18 months or so and so dx'ed initially with hypochondria, this cancer was found by accident when someone was finally willing to investigate the nausea and weight loss). That one is indolent but has no cure. Totally eclipsed the second BC diagnosis with respect to the emotional earthquake (in fact I told my breast oncologist that I could only deal with one cancer at a time and BC was not it). I found a huge qualitative difference between being diagnosed with a cancer that has no cure and one that potentially does. While the entire educate yourself about your cancer, etc. applied, the no cure aspect put me in a completely different emotional place. That made it a new journey, where as BC for the second time I was upset but not to the extent I was when I was dx'ed the first time and not like I was with the fnhl which was so qualitatively different than either of the other cancers due to the no cure aspect.
Report
Susan Fariss

Member
0 Replies
Posted on
June 27, 2015
It's more appropriate to say someone has Stage IV or metastatic cancer, rather than end of life. No one is truly end of life until they are dead. Sadly breast cancer can go Stage IV at any point, even years later. So really, breast cancer is never truly cured. Still, even with Stage IV breast cancer myself, only way to deal with it is to go about the business of living. The biggest education need to be the lack of funds for medical research. We need to kill our country's second-greatest killer, cancer. Too many lives are at stake.
Report
RA

Member
0 Replies
Posted on
June 27, 2015
I only had stage 2-3 breast cancer with 3 out of 3 node involvement. Like you said, every cancer and individual are different. It remind me of pregnancy. They are all different and seldom textbook. I was not prepared for the outcome treatment by the bilateral mastectomy, chemotherapy, radiation, and anti-hormone blockers. Rather it was a cause or not, I am now menopause with hot flashes, I have sleep apnea, I had joint pain and have nerve pain, I have acid reflux, and I had recurring pneumonia. The best thing I did was be upfront with friends, family, and our church. I sent out regular updates. Some was afraid to ask, but most wanted to know what was going on. I think this helps in educating the public. It may also help them handle the sensitive nature when it occurs to others around them.
Report
Patty2

Member
0 Replies
Posted on
July 23, 2015
When my husband was diagnosed with multiple myeloma 15 years ago, I knew I had to do something more than to wait around for it to return. However, after his first battle with radiation, chemo, a stem cell transplant, and more chemo, he relapsed. That was it. I had been studying different alternative ideas out there and found one that he has been on for 11 years. His health improved, and he has not relapsed since he has been on the product. The best thing we ever did was to be open minded about other things out there. My husband is still here, and I thank God everyday for introducing me to the person who told me about the product that has kept both of us healthy. (She had been diagnosed with cancer; and she has been on the product since the 1990's.) The best thing people can do is reach out, especially when someone needs help or inspiration. Keep talking to people, doing research and you never know what you will find out. If interested, respond or e-mail me: Triced99@aol.com. Pattt
Report

Page 1 of 1 1

You must log in to use this feature, please click here to login.
×

Sign In

Not a member? Sign up now!