I have IBC

Dear Ladies,

Just to give you some hope, I am an IBC Warrior or so I would like to think.  I am in my 3rd battle since June 2005.

My name is Sue and I live in Townsville.  I was firstly diagnosed with ductal cell carcinoma then within 6 months (diagnosising myself from research), IBC. And now since April 2010 I have secondary metastasis to the ilium or as known the hip bone.

By diagnosing myself, I am talking extensive spread which I was told by the surgeon who is now supposedly the breast cancer surgeon here that he was not sure what he was dealing with.  As I watched my cancer spread, he kept sending me away until I finally demanded that either he knows what he is dealing with, send me in for an MRI and bone scans or send me to Dr McCarthy in Brisbane whom is THE IBC specialist we have here in Australia.  He finally sent me for the scans to find I had extensive skin thickening and so would have to do the chemo, radiation to shrink the tumor then surgery and possibly more chemo and radiation post the surgery.  However, my plight is this...... The tumor is resistant to chemo and radiation.  How can that be?  I have a beautiful oncologist whom I challanged, I asked questions and I researched till I found something that is stalling the spread as well as building up my immune system to keep me here today after being given a grim chance off survival. I pulled out my battle armour that I packed away and between the diagnosis off IBC and secondary metastasis I had almost 4 years. My oncologist is surprised I am still here and the only reason I believe that the tumor had returned was because this product I was taking I thought I was or have won I had stopped taking 3-4 months prior to the recurrence. 

I had started it immediately back in April 2010 as soon as the spot was seen on the bone scan and surprisingly though, my medical team was sure I was doomed as this area where I have the tumor is the last place it goes too after having spread to the organs.  My luck is that no spread to my organs at all and even though I had my last bone scan in February, the tumor still there but has not grown or spread as was expected.

When I spoke to my Oncologist who believes that this one thing is keeping me here and naturally grown that mimmicks stem cells, he said at the end off my consultation that he now does not want to see me monthly anymore but I am now back on 3 monthly visits and to stay on what I am using as it seems like its doing something.

I am not going to tell you how you should live your lives, but one thing is to continue doing what some off you ladies are doing and that is LIVE> Go to work, have a social life and do not think off the word DEATH or Dying. Currently their is 1 other lady here in my home town that has IBC and she is very much like me so I am told but she is 3 years in front and still LIVING too.

Remenber these words- I have Cancer BUT Cancer does not have Me.

I currently work 25-35 hours each week, my hubby is off to play war in Afghanistan and I have 2 challanging children at home (both have ASD) and a 20 year old who has followed dad's footsteps.

No matter what life throws your way, LET IT BE, take that deep breath and move on.  Do not let negative people surround you as this becomes draining on your immune system.  You have a battle in front off you and only surround yourself with uplifting people who make you laugh, smile and see the world in a different perspective.  The world has so much negativity in it and you will have to become selective.  Look after yourself, do the things you want to do.  Cry when you want to cry, laugh when you want and sing loud like no one can hear you- go buy a singstar.  Live each year and celebrate that year off survival and plan out the next 12 months. 

I noticed that an oncologist in one off the blogs said about 500 are diagnosed with IBC.  Just remember their are many women who are not as lucky as us knowing that we have been given a second chance at life, however, as some do not seek medical help and girls as young as 8 have been diagnosed with this retchid cancer, really I do not think they know when it comes to numbers.  Most die from this cancer without a diagnosis. It is an aggressive tumor and once you have it, really the battle is on for long term survival.  I have accepted my time is running out.  I have been through every emotion the human body has, But peace comes with acceptance and moving on.  When you have accepted this, then you are at peace no matter what happens.  Live every day as it is your last.  Be with the people you love and stop saying sorry to people.  What are you being sorry for.  Whatever you do, do not be sorry for yourself,  be in harmony and as we all know it we are here all for a reason.  We all have our journeys and some are here to battle it out whilst others have a short time with us. 

Whatever, your staging is, you live your life with dignity, do what you want to do and laugh everyday.  Do not accept a time frame.... Do not accept No or that is all we can do for you.  Keep your heads up high and walk with pride.

I have lost alot in the last 10 years, not only my breasts, my marriage- well, we are together but not the same, all my womanly internal organs (very important for IBC diagnosis- hormones) but I have gained alot too in areas that surprised myself.  It has made me a stronger person and I see life in a different context.  Do not stop asking questions and be peace with your soul.  Love to you all.  P.s the magic stuff I am taking is called Blue Green Algae- organically grown Klamath Lake.  Also high dose selenium.  Sue