For those with mets- what would you want the world to know
 

Ladies, The news station in NE Iowa called and asked if I would do a 2 min live interview on living with metastatic breast cancer.
Looking for some ideas of what I should educate others on. Please give me some ideas.

Re: For those with mets- what would you want the world to know
 

That no one "beats" breast cancer. It can return at anytime, even 10 or 15 years after being in remission.

That 30% of early stage women will become metastatic. "catching it early" is not a cure.

That very little money goes to research for metastatic breast cancer, eventhough that is what kills. No one dies from early stage breast cancer. Think before you pink- make sure that the money you are giving or think you are giving by buying pink products actually goes to research for metastatic breast cancer.

Good luck. Let us know how it goes.

Laurie

Re: For those with mets- what would you want the world to know
 

The WHOLE clinical trial process is a joke. The relationship between big Pharma. and the FDA needs to be investigated. Those two comments should stir up a can of worms if they (meaning mainstream media) even allow them on the air.

Re: For those with mets- what would you want the world to know
 

In your case, the reclassification of Er+ seems to be the turning point of your treatment. Perhaps you can elaborate on that and touch on the complexity of breast cancer and the importance of taking initiative in our diagnosis and treatment.

Re: For those with mets- what would you want the world to know
 

Hello Kristin,

One thing I think what people need to undersand is that stage IV-metastic disease means we are never done with treatment. I want to say never. I know that there have been a few people on this site who have not been receiving any treatment; Steph and AndiBB, I believe. How wonderful for them and rare.

Otherwise, treatment through either pills or IV infusions become part of our schedules. Blood work and scans become part of our schedules just as we would schedule in date nights, time with our families and friends, church, work, etc... So, when people inquire, "Are you done with treatment now?" The answer unfortunately is no.

I also concur with everyone else about the issue of donating your money to research centered organizations and being your own advocate.

I appreciate you doing this, Kristin. As you are such a young woman with a little one, your story will be most heart breaking for them to hear.

Take care,

Jackie

Re: For those with mets- what would you want the world to know
 

Some time ago on this site someone put together a list of things to say or do when someone has cancer - it might be worth looking at because I think that's also something that isn't obvious to our friends, colleges or families and if they want to help, maybe some tips on what helps and doesn't.

Re: For those with mets- what would you want the world to know
 

I want the world to know that for most of us with Stage 4 disease we live having constant treatment for the rest of our lives and that for now (statistically) our lives are drastically shortened as there is no cure. People still think that I can be cured and cannot believe it when I say that the Doctors believe that there is nothing that they can offer apart from palliative treatment to slow the disease progression down.

I want the world to know that young women get very aggressive disease that is very difficult to treat.

I want the world to know I will never give up because I don't want to die before my children grow up and I don't want my children to get this disease.

I want the world to know that not enough research is done on metastatic disease - prevention does not cure, treatment cures and so far the treatments are not good enough.

Good Luck!

Re: For those with mets- what would you want the world to know
 

Amanda,
Beautifully and clearly stated. I couldn't agree more!

Good luck, Kristen! You'll be great!
Denise

Re: For those with mets- what would you want the world to know
 

I concur with Denise! Beautifully and clearly stated Amanda! Kristen I think you are going to have more to say than you can pack in two min.! I feel you will do great!

Re: For those with mets- what would you want the world to know
 

Good on you Kristen for spreading the word - this is certainly a good place to get inspiration. I have to say Amanda's heartfelt contribution says it all. Let us know how you go....
Cheers Marie

Re: For those with mets- what would you want the world to know
 

Kirsten,
Ask them how you can post the segment here, it would be great to see.
Good luck with the interview and with your health.
Treatments are getting more directed all the time and breakthroughs too so let's hope they happen really quickly.
hugs and love
sarah

Re: For those with mets- what would you want the world to know
 

Kristen,
I agree with every stated so far. I would add a few words of encouragement. When I was diagnosed my daughter had just started High School. I assumed I would be dead before she graduated and certainly the years I did have would be spent on the couch.
It hasn't been easy but 5 years later I am here. During those 5 years I've been able to work, travel, be there for her.
Hence....don't count us stage IV women out. We are fighters and with innovations we can lead meaningful lives.

Lori

Re: For those with mets- what would you want the world to know
 

Totally agree Lori - there are stories where we try to manage stage 4 as a chronic disease and still live happy, fulfilling and rich lives - I think we all aim for that. We are incredibly strong, determined women - that's a great message to get across - we are more than surviving we are living!

Re: For those with mets- what would you want the world to know
 

We need more "awareness" than 2 minutes on air every PINKtober. And to tell others who are newly diagnosed with stage 4, that it IS possible to LIVE a quality life with this disease, however, living a LONG life will not happen without more sincere efforts to find a cure. Until CURE is a sincere goal, verses the treatments that are loved by all the NCI,'s and big pharma's we are destined to live on treatments.

Re: For those with mets- what would you want the world to know
 

Thanks ladies- this is a great help, often I can't put together all the thoughts and feelings even I experience.
I will try to post it on the message board here- Interview is Oct. 8th at 5pm.

Re: For those with mets- what would you want the world to know
 

Look forward to it

Re: For those with mets- what would you want the world to know
 

For the pharmaceutical companies, doctors, hospitals, home care and whoever else has their hand in the cancer cookie jar, there's no need for greed. My family would gladly empty their bank accounts as would millions of others for a cure. Find one

Re: For those with mets- what would you want the world to know
 

oops im a little late

Re: For those with mets- what would you want the world to know
 

I am late too but just wanted to say that I really liked Jackie07's answer.
K