metastatic breast cancer

All posts tagged metastatic breast cancer

My Mea Culpa

Published August 1, 2015 by Deb Ragosta

First, let me apologize for using statistics in my last post (The Cancer Words) that, although I got them from what many of us consider a reputable source, turned out to be questionable to one reader who took exception to them and the source from which they came.  One of her grievances was that bloggers need to be more careful about the statistical information we post.  I agree it’s wrong to perpetuate inaccurate information, but there is a wide variation in this particular statistic, and not only on the many breast cancer blogs.  The commenter is a physician with a recent history of breast cancer (although she did not indicate the stage of her initial diagnosis.)  She did write that none of her physicians agreed with the statistic in question.

The last thing I want to do with my blog is to share information that is or even may be incorrect, nor do I want my readers to feel the need to quote scientific journals in an effort to prove me wrong.  My blog is intended to be personal observations of my journey with metastatic breast cancer and reflections I’ve made during that journey.  I am not a clinician or scientist, never presented myself as either and will, in future blogs, refrain from using statistics.

For me, once I was diagnosed at stage IV, the statistic concerning how many people diagnosed with breast cancer who will be later restaged to stage IV stopped mattering.  I am a lifer and simply want to share my thoughts with those who choose to read my blog.  I do welcome your comments and will always approve every one (except for obvious spam) and make every effort to reply.  Should you want to read the comments I’ve referenced in this post and my responses to them, please check out the comments section and the end of The Cancer Words.   Thank you to all my followers!

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

The Cancer Words

Published July 13, 2015 by Deb Ragosta

Ever since I was old enough to know what having cancer could mean, and well before my own 1990 diagnosis, there have been an assortment of what I call “the cancer words” that were and are used to describe cancer, a person’s status with it or an oncologist’s “real” opinion of a patient’s odds after telling his or her patient the most dreaded words of all – “you have cancer.”

My earliest recollection of a famous person openly talking about having cancer was the Hollywood legend, John Wayne, on the Tonight Show, talking about his lung cancer diagnosis.  Wayne’s image was that of a larger-than-life tough guy who had starred in many westerns – always as the hero and always surviving to live for and fight another day.  I wasn’t a fan of his movies, but what I remember about him was that he always referred to his disease as the “BIG C.”  John Wayne didn’t have cancer, he had the BIG C and surely, the big movie star would beat the hell out of that “C.”  In the end, regardless of what he called it, even John Wayne was no match for cancer and the disease took him in 1979.

Of course, our world is much different now than it was in the 1970s.  President Nixon’s 1971 “War on Cancer” was a hopeful moment in time that has long past.  In fact, some sponsors of the legislation predicted a cure by 1976. Today, the internet and social media have changed the way we get our information and how we use that information.  Oddly, however, the words we use when talking about cancer haven’t changed and still have different meanings under different circumstances to different people.  For me, the most glaring of these is the word “cure.”  As a woman with breast cancer, I’ve done my share of walking, talking and raising money “for the cure.”  Although I know differently now, prior to my stage 4 diagnosis, I actually thought there was a cure for breast cancer.  After all – what was done with all that money raised?  I wasn’t alone in my ignorance.  Following my diagnosis, and my realization there was no cure for my disease, I engaged in a Facebook argument with a friend of a friend who posted that there was definitely a cure for breast cancer because one of her friends was diagnosed, took a pill for a few years and now she is cured.  As angry as that made me, I had to admit (to myself, at least) that I had the same misunderstanding of the how the word “cure” is used when referring to different cancers.  The reality is that, according to information provided by the Metastatic Breast Cancer Network, 20% to 30% of patients diagnosed at an earlier breast cancer stage eventually move on to stage 4.  Does that mean the other 70 to 80% are cured, or do they simply die from something other than cancer before the cancer resurfaces?   There is no time limit on making the jump to stage 4.  Up to ten percent are diagnosed with metastatic breast cancer from the get-go and others can live 20 or more years after their stage 1 diagnosis before they become one of the lifers.  Still, the word “cure” is tossed around by oncologists and medical teams, unintentionally giving many what turns out to be false hope.

Are you in “remission?” is a question I get asked often.  I guess because I have my hair and look healthy, people who know I have metastatic breast cancer assume I must be in remission.  Many people don’t know that stage 4 is terminal and they think being in remission is a good thing because they equate it with being cured.  Remission is a word used frequently in the medical community, especially as the word “cure” slowly falls out of favor because it doesn’t accurately reflect most patients’ relationships with their cancers.  According to WebMD, there are two types of remission – partial and complete.

“Partial remission means the cancer is still there, but your tumor has gotten smaller. . .  Some doctors tell patients to think of their cancer as “chronic,” like heart disease. It’s something you will need to continue to check. If you’re in partial remission, it may mean you can take a break from treatment as long as the cancer doesn’t begin to grow again.  Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

For us in the metastatic breast cancer community, being told we are “NED” is like getting manna from heaven.  We know cancer is still in our bodies, but our scans and tumor markers are normal, therefore, we can “dance with NED.”  We may never hear what we really want to hear (“you are cured”) but as long as we are NED, we are as close to being cured as we will ever be.  The hardest part is explaining to others that just because there is no evidence of cancer, it doesn’t mean it’s not there.

There are many words used when talking about cancer.  Some have changed since Nixon’s War on Cancer, but regardless of the words we use, it’s not the words that are the message.  The way cancer is treated has come a long way and more people with cancer are living longer lives.  In spite of new medications and protocols – cancer is still a killer, and that should be the message.  What has changed, is that we aren’t afraid to say the words that are part of every cancer patient’s dictionary.  However, we can’t begin to come to terms with the reality of our own cancer until we can understand the true meaning of the cancer words.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Finding the Support We Need

Published June 22, 2015 by Deb Ragosta

Very few of us can go through life without some sort of support system.  Whether we are dealing with metastatic breast cancer, other diseases, divorces, substance abuse, raising our children or just living one day to the next, having support can be the difference between struggling and flourishing.  We are responsible for ourselves, but we are human and sometimes need others to help us deal with whatever it is we are experiencing.  For some, acknowledging the need for support would somehow leave them feeling embarrassed and diminished.  For others, embracing support is one of the ways they get through rough patches in life.  Some of us have amazing family and friends who offer us the support we need, when we need it – often without our asking for it, but just because they know we need it.  For others, there is no one who can give them support – often because those who are the closest to them may not be the ones who can offer the best support because they are too close to the situation and their support is wrapped in their own emotional connection.  Sometimes, it’s just easier to share with (and accept support from) strangers because they hear what we want them to hear without the “noise” of relationships, connected experiences (both positive and negative) or other extraneous perceptions.

After I was first diagnosed at stage 1 in 1990, I attended a local breast cancer support group for almost 5 years.  It was a very active group, facilitated by an oncology nurse and/or social worker.  It met monthly and it was rare for there to be less than 20 women in attendance.  Some women came once or twice and never returned.  Others came regularly every month.  Along the way, we lost women who had become our friends.  Even now, all these years later, I remember the middle-aged Loretta, who had 15 malignant  lymph nodes at her original diagnosis and was sailing along until, years later, the cancer spread and was aggressive.  She passed away shortly thereafter.  I remember Amy, who found a lump when she was pregnant.  Her physician dismissed it as benign tissue caused by the hormonal changes of pregnancy.  When she finally had a biopsy, the cancer had spread throughout her body.  Her child was five when she passed.  Both she and Loretta came to the group for support, but gave us so much more support than we could ever give them.  Each faced the reality of her diagnosis with grace and dignity that lifted me and inspired me to be a woman who would never be defined by breast cancer.  Their stories were powerful reminders to me that not every woman (or man) gets diagnosed at stage 1, and not everyone has treatment and walks away to live and enjoy the rest of her or his life as a breast cancer survivor.

Today, support groups have shifted (like most things in our world) to virtual, or on-line formats.  The internet allows us to be more informed and has given us the ability to gain as much knowledge as we chose to have at any point from pre-diagnosis through treatment and beyond.  There are statistics to scare us and statistics to reassure us.  The more advanced our cancer, the scarier the statistics.  “In-person” support groups exist, but many have fewer and fewer attendees as more cancer patients turn to the internet.   Prior to having the internet, many people attended support groups to get information about their disease,  Today, of course, the internet provides that information instantly, just for the asking (or Googling.)  The latest incarnation of the support group involves “calling in” and participating via phone and/or a venue such as Skype.  Although the way we get our information continues to change, I still believe in the power of traditional groups because seeing and hearing how others deal with their issues can’t be totally replaced by simply reading posts or connecting to a person on the other side of a computer screen.  Emotions are best shared and understood with a caring look, touch or hug – all possible only in the physical presence of others.

Little did I know when I was first diagnosed that my choice to attend a support group would give me so many coping tools that I use every day as a woman now living with metastatic breast cancer.  Thank you Loretta, Amy and every woman I met during those early days of my breast cancer journey.  You still support this “lifer” in ways I cannot even begin to thank you for.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Giving Thanks

Published November 22, 2011 by Deb Ragosta

As I thought about what I wanted to write this week, my mind kept going back to the fact that in a few days, another Thanksgiving will be upon us.  The holiday means different things to different people, especially as we grow up and become adults.  For some, Thanksgiving means planning a day to spend with family or friends and either travelling to them or entertaining them in our homes.  For some, Thanksgiving means scouring the ads and planning one’s Black Friday strategy.  For some, however, it means facing the first major holiday without a loved one.  Most of us have been there and many probably agree that the thought of having that empty seat at the Thanksgiving table casts a sad pall over the thought of not only the Thanksgiving celebration, but of the coming weeks as we head towards other holidays.

In the past few months, we have lost several women who were regular posters on bcmets.org.  We miss them, not only because they are no longer a part of our group, but because they represent what lies ahead for us.  One day, the “sad news” will be about our own passing, posted by a grieving loved one or another poster who knew us or came across our obituary.  Although it is morbidity that might be unimaginable to some – for women and men with metastatic breast cancer, it is reality.

This will be my third Thanksgiving and holiday season since my own mets diagnosis (20 years following my stage 1 diagnosis).  I’ve now had more than 2 years to think about what I could possibly give thanks for.  To be honest, my first Thanksgiving following my diagnosis in 2009 was filled with sadness and uncertainty.  I looked around the room at the big family gathering and pictured future gatherings without me.  The fact that my ex mother-in-law, who I adored, had died from lung cancer earlier in the year didn’t help.  In 2010, I was invited to my daughter’s boyfriend’s parents’ home.  Since I hardly knew them, most of the day was filled with small talk and honestly, with the exception of my daughter, not having to be surrounded by family actually helped me because I didn’t have to spend the day trying to show how good I was doing to relatives who saw me once or twice a year and expected me to be sick because I have advanced cancer.  I still wasn’t ready to “give thanks,” though.  As we headed to this year’s holidays, I decided that I was ready to give thanks, because, in reality, I do have many things to be thankful for.

Of course, I am thankful that my cancer hasn’t spread.  It’s still in my back and has made no move.  (Passing the 2-year mark in October was huge for me!)  Once again, I will be spending Thanksgiving with the family who are now my daughter’s future in-laws, as she and her wonderful fiancé will be marrying in June, 2012 – yet another thing to be thankful for.  I am thankful for those who have passed, as they left me a very powerful message about facing metastatic breast cancer with dignity and grace – never giving in to the part of cancer that can so easily strip our soul and spirit.  Most of all, however, I am thankful for my family, friends, co-workers and medical team.  Without their continued support, I could not walk my walk.  They lift me in the moments I need them and are always willing to laugh with me on the good days and cry with me on the bad.  I am incredibly lucky to have them in my life and although it’s taken me more than two years, I can finally say I give thanks for my wonderful life and can once again wish others a “Happy Thanksgiving.”

May God Bless you on this Thanksgiving, and always – on the good days and the bad!

Don’t Stop Believing!

Deb

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