Do We Really Need a Special Day for Secondary Breast Cancer?


Do we need a special day for secondary breast cancer?
Don’t we have a whole month of ‘pink’?
Isn’t that enough?
Thoughts from a turtle in a cape.
P1nk66 - Turtles RuleYou can see by my profile pic that I am a turtle. I live life and do not just exist through it.As a good little turtle – I may be slow but I never ever stop. It was not always this way.

I had a ‘crazy but normal’ life, wife, mother, worker, friend and the list goes on. In 2004, the last thing you could have convinced me of was that on 11 November 2004 I would be diagnosed with early breast cancer.  At 38 there are no regular mammograms available but thankfully I had always done my monthly breast check.  It just was one of those things. No family history and no real reason, it just was.

As many people dealing with breast cancer, I went to war. I dealt with my diagnosis head on and I was fighting to win.  Battling the enemy I would use any treatments that were necessary to win.  My diagnosis numbers and letters seemed good and eight years down the track I thought I was safe – I thought I was past it but it was not to be.  Not for me.

On the 7th of November 2012 out of the blue and totally unexpectedly, I was told – “We can treat you but we cannot cure you. Your cancer has returned to other parts of your body”. I now live a life with a ‘new normal’.

  • 1 in 8 will get breast cancer by the time they reach 85
  • of those diagnosed where breast cancer is contained within the breast 1 in 20 will at some stage develop secondary breast cancer.
  • where the breast cancer is outside the breast ie lymph nodes, 1 in 6 will at some stage will develop secondary breast cancer
  • 12-15% of diagnosed patients begin with a secondary diagnosis
  • approximately 20% of all breast cancer diagnosis will progress to secondaries
  • there are approximately 9,000 people living with secondary breast cancer in Australia at the moment (estimates as statistics are NOT kept)
  • A secondary diagnosis does not mean that you have been diagnosed twice. It means that the cancer has moved from the breast to distant parts of the body – most commonly lungs, liver, bones and brain. For this stage of breast cancer there is no cure.

    Header SBC
    Secondary breast cancer is also known as Advanced, Stage IV and Metastatic

Every single day, as more and more people (women and men) are handed an early breast cancer diagnosis, I see and hear the fear with the thoughts of ‘what if”.  The thing is, even with a stage 3 cancer with multiple node involvement does not automatically result in a progression to stage 4.

There are statistics and estimations but they are just that.  There are many factors that will be stacked up against each and every individual case and we can only do what we can do to be happy and healthy.  I call my squatters arriving at my door “dumb luck”. No-one can tell me why I am sitting here with Secondary Breast Cancer after so long, just that I am.

It is always better to work with the best odds you can. The fact is that around 20% of all breast cancer diagnosis will progress and be secondary breast cancer. Wonderfully, that leaves around 80% that will not.

Early diagnosis actually means not secondary – not spread to distant parts of the body.  I am always being asked about having early breast cancer in 2004 and why, if it was ‘early’, do I now have secondaries in my liver and bones. I personally wish they would call it primary  diagnosis as it just sits better with me and it is easier when I explain it to people.

Secondary breast cancer is a never ending scan – treat – repeat. It is very unusual to be on zero treatments once you have been handed your diagnosis.  Even if your condition reaches a time of  ‘stable’ or ‘no evidence of disease’ (NED) there are always drugs needed to keep it that way.

When you have secondary breast cancer and there is NED it just means that at that time the cancer cannot be seen. The medical teams will never ever tell you that it is gone. Why, because it almost always shows up and progresses again.

There are many treatments and there are many combinations of the cancer which means no two people are alike. This is what makes it all so very tricky.

Basically the issue is that our cancer is smart.  It may be ‘injured’ and even to the point of ‘no evidence of disease’ at times. However,  it always seems to work out a way to get around whatever we throw at it.  The best way I can describe it is like this:

  • I am standing in a field, and the (squatters) cancers are attacking me.
  • The medical team build a wall around me to protect me.
  • It works for a while but then my squatters work out how to get around it.
  • So the medical team change tactics and build a new wall. This may or may not work but if it does it is only a matter of time before the squatters work out how to get over the wall.
  • All the time my body is dealing with toxic walls and is weakened by them even though they are helping.
  • This process will generally continue until my body cannot deal with the cancer and/or the treatments any longer.
  • How long this can take is up to so many factors. Each of us aim for years not months – I think that goes without saying.

There are times of feeling pretty good and times of not so good.  It is just how it is.  The cycle can be for a day or for weeks or months – It all depends. It is all about living with and not waiting to die from breast cancer.

People living with secondary breast cancer are more than just the diagnosis.

I may be living with my ‘new normal’ but I have not stopped being a wife, mother, worker or friend. I still laugh, love, cry and dream. None of that has changed. I have changed and every single person out there living with secondary breast cancer, in their own unique way.

Living Life2

In 2004 I was a warrior fighting the war. I would not change that, not even the wording, as it was me at that time and it was suitable. In 2015 I know better. The battle and war is still raging around me but it is not a fight I will lose. You cannot lose to breast cancer. It is just that your body becomes too weary to continue and it becomes time to rest. That is.. no lost fight.. not ever.

So as we come up to another secondary breast cancer awareness day I would like to bring these things to your attention:

  • Secondary breast cancer is the ONLY breast cancer that can kill. All other stages are deemed ‘curable’
  • Looking fabulous on the outside is a bonus but our insides are not playing the same game
  • Treatments are harsh and toxic and there needs to be MORE done to ease the side effects of the treatments that are trying to keep us alive
  • Current treatments are a statistically calculated effort to slow down the cancer but they CANNOT stop it (for long)
  • Scan – treat – repeat is a way of life when living with secondary breast cancer
  • Research is the ONLY way that we will find more answers than questions
  • Education and awareness is still paramount. Even though  many people will deal with breast cancer and never see it again, it is knowing that too many people will still progress to a secondary diagnosis. Without understanding and knowing our own bodies really well, more and more women (and men) will present far too late and begin their breast cancer diagnosis with a secondary diagnosis
  • Saving the tatas, showing your pink undies, talking about being wrapped in a banana skin on facebook are silly, light-hearted games. They do not and never will solve the puzzle that is secondary breast cancer. Only quality research can do that.

Stop Awareness and Find a Cure?

No, just make sure the awareness is actually education and research is funded.

It is all we can ask…..

—ooo000ooo—

The answer to the questions at the beginning of my post:

Why do we need a special day for secondary breast cancer?
We need this day and yet we need more than just a day. It was only recently that a very determined lady in the USA encouraged Congress to dedicate this one very important day. The rest of the world is now catching on. Stage IV is a killer and that depending on many factors there will only be around 22% of people diagnosed still alive after 5 years after receiving secondary diagnosis. This number is no doubt better than 10 years ago and it needs to continue to get better and hopefully will as treatments become available and are more effective and give a quality of life at the same time.

Don’t we have a whole month of ‘pink’?
YES,  but there are many shades of pink and they are not all pink and fluffy – people still are dying. Education, awareness needs to be continuous and so does research.

Isn’t that enough?
Pink in everyone’s faces can be a daunting exercise but without awareness there would be no education and without education there would be less research $$ and without research there will be no improvements in outcomes in the future

Advertisements

9 thoughts on “Do We Really Need a Special Day for Secondary Breast Cancer?

  1. I think this is fabulously written and wish lots more would see it. I am currently undergoing 6 weeks of radiation treatment for Early Breast Cancer so although I feel my journey is tough at times it is nothing to what you have to contend with and you explain it so well. I think that is part of this “Cancer” problem, that those that aren’t affected have no way of understanding what is going on in your body unless there are brave people like you to put it in writing. Wishing you all the best. Maria

    Liked by 1 person

    1. Thank you Maria. The diagnosis and treatment you are currently undergoing can certainly be tough and should never be underestimated by anyone around you. I am wishing you all the best and once the treatment is completed that you find yourself in your ‘happy place’ and that cancer never darkens your door again.. Sending Turtle hugs your way xoxoxoxo

      Liked by 1 person

  2. Very well written Sharon. You know how much I love you and your work so I hope you will allow me to note a couple of grammar mistakes – I would love this piece to be further published and in doing so have no room for little errors. (Those bloody little prankster turtles have been at it again) It is my OCD in English coming out. Maybe I could use my talents to correct menu scripts for films/literature etc.

    Like

  3. Love this. I am 42 living with secondary breast cancer for 2 years! About to embark on chemo again this Thursday which is weekly and ongoing. Stage 4 needs way more publicity.

    Like

  4. Reblogged this on Turtle Surprises and commented:

    This is an unusual post to place on Turtle Surprises. I feel it is far to important not to share. Today is Secondary Breast Cancer Awareness Day. Where all the pink becomes a darker shade and we acknowledge all those who are living with this incurable and deadly disease. It is also a day we remember those who have been taken by it.

    Secondary (Metastatic, Advanced Stage IV) Breast Cancer is when the cancer moves away from the breast to the lungs, liver, bones or brain. Once it moves, it cannot be cured.

    Living with SBC is challenging to say the least but I am living with it and not waiting to die from it. Please take a moment today to think of all those affected by Secondary Breast Cancer. Thank you. Sharon

    Like

  5. I appreciate your position but I am a stage IV metster and have NEVER been early stage. I have been stage IV metastatic since day one of my diagnosis. There was no other time for me where I had a chance to even hope for a “cure”. I have only been able to hear that “we can manage your cancer”. People don’t understand stage IV MBC, so I respectfully submit that WE DO NEED A DAY FOR OUR GROUP! In fact, we deserve more than one day because 40% of breast cancer patients will die as a result of stage IV MBC. The month of Pinking and people believing ALL breast cancer is curable and not the deadly disease it is, makes it necessary to educate the public.

    Like

    1. Hi Nikki and thank you for your reply. I know many women who have been diagnosed at the very beginning with secondary breast cancer. As this is not my personal situation I could only write about my experience. It was remiss of me to not summarise at the bottom to clarify my position (which I have now done). I wrote this post because it is so very important to me that those living with a secondary diagnosis are not lost within the sea of pink as it is this amazing group of people that are dealing with a deadly and incurable disease on a daily basis and it needs to be known. I wish it did not come down to how many days we receive (which was the reason for the original questions to spark discussion) but the importance that is placed on solving the puzzle that is breast cancer. I promise you that I am an advocate, a public speaker and a community liaison and spend much of my time speaking to groups, and online educating and informing those who will listen and not just in October. kindest regards, Sharon

      Like

Thanks for Stopping By, So What Do You Think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s