Do We Need a Special Day for Secondary Breast Cancer Awareness? Thoughts from a turtle in a cape

Pink66Pink66 Dragonfly Posts: 367
edited September 2016 in Metastatic breast cancer

Why 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..........

You 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.
  • 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.

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.....

#SBCAD #showyoursupport

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Comments

  • Heather72Heather72 Member Posts: 11
    edited October 2015

    Thanks for sharing. It helps us all on this Breast Cancer journey.

  • CatscrapcatsCatscrapcats Member Posts: 81
    edited October 2015

    Yes thanks for sharing, well written. Just wish everyone could see it.

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    xoxoxoxox  thanks Heather :)

     

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    Hi Catscrapcats, If you are interested in sharing.. I have also done a blog post at P1nk66..  This the the direct link

    http://wp.me/p3O6YT-w1

    cheers, Sharon

  • Robyn WRobyn W Member Posts: 1,932
    edited October 2015

    Wowsers!!!!!This is an outstanding post that I hope will be FEATURED on here for a couple of weeks, so as many people as possible can read it!!!BCNA admin, can you please move this post to the top of the featured ones? It is informative beyond words, and very sensibly written.Thankyou for sharing this with us.I bet there is not one lady on here that would not have learnt something from your writing.By the way ,your photos are gorgeous.You are beautiful :):) Cheers Robynxox

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    thank you so much Robyn for your kind words..  xxx

  • LeeSLeeS Member Posts: 132
    edited October 2015

    Thank you. I have posted to fb. Xxx

  • Jen McDJen McD Dragonfly Posts: 22
    edited October 2015

    Thank you so much for all that you have written, and shared.  This highlights the difference between "early" and "secondary", and  your description makes it so much easier to explain things to others.  I hope you don't mind if I share your post - and I loved your photos.  You are beautiful as well as caring and positive, making a difference for others every day.  Just wish that the ferals/squatters would get the message that they are unwelcome, and leave : ) 

  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 139
    edited October 2015

    Thankyou and well said,

    there is nothing more that I could add, you have addressed everything,

    I have just finished a telephone link up with other ladies in our situation, for want of a better word, and I was surprised that the facilitators of the telephone conference,were totally unaware that today was in fact secondary breast cancer awareness day,I wont name the organization, as I dont want to embarass anyone,

    Today and everyday I celebrate that I am here and grateful for everything in my life, for the wonderful medical team that I have, to my amazing partner and family,

    Cancer, is a journey, not a destination as far as I am concerned,

    wendy55

  • Karen_CKaren_C Member Posts: 44
    edited October 2015

    Hi Pink 66

     

    I agree with you about "find a cure" but in the meantime those of us living with Secondary Breast Cancer are living longer and need to live as well as possible.   While we do so, our financial situation gets worse.   I prematurely left work, went on income insurance because the company where I worked for 22 years did not honour a part-time position. This caused a ripple effect that today makes life tricky financially.  

     

    Here is a hypothetical, if I was able to go part-time, I would not have used my income insurance at that time, I would have been contributing pro-rata to my superannuation and I would have been earning income.

    Workplace relations need to change.   Cancer is considered  to be a disability under anti-discrimination laws so an employer has to make reasonable adjustments so people living with cancer are not disadvantaged.  I don't believe this is understood by employers.  If this was adopted, I would not have cashed in all my chips and would not be living on a disability pension.  My husband would not be working 6 days a week.

    Those of us who are living well, should have the opportunity to earn an income.   

     On the medical front,  I am aghast that we do not know how many people have Secondary Breast Cancer.   We need a national data base that capture patient statistics that allow doctors and medical policy makers make informed decisions about drugs that demonstrate a clear patient benefit and treatment outcomes that significantly improve quality of life or improved symptom control.  This is needed more than ever as many new targetted drugs become available which are not available on the PBS.

    In closing, I have highlighted a couple of areas that needs attention so I think we need awareness to highlight issues that effect people with Secondary Breast cancer.

    Take care and live well.

    Karen Cowley 

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    aww. hugs to you Jen.. thank you xoxo  and yes, please feel free to share..

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    I agree Karen.  I cannot imagine going to an interview and trying to explain my situation and walking out with employment!!!..  It is so not right and I am sure employers on the whole are ill informed and afraid.  I hear far too many stories of even those dealing with EBC being given the flick..  It really does need to change.

    As for our 'stats' it is the one thorn in my side I wish I had the power to change..  All enquires end up hitting the wall and their too hard basket..    Without stats we have a much harder road to convince those with the power because they can only see grey..  I am sick of hearing that it is a funding issue and also a state no federal no state issue!!..

    hugs to you..  cheers, Sharon xoxoxox

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    hugs wendy..  yes, it is amazing that in a month of pink we are still struggling to be heard..  we are not different, we just have a darker shade of pink..  sometimes it is invisible..  (shhh. a certain little turtle is working on shouting from the rooftops as often as possible LOL)

    I agree, not sweating the little things and knowing what is important means we are rich indeed

    Sharon xoxoxox

  • Pink66Pink66 Dragonfly Posts: 367
    edited October 2015

    thank you Lees xoxoxoxo

  • wenno05wenno05 Member Posts: 22
    edited October 2015

    Thank you xx

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