Hello

Nattie

Hi to everyone

My name is natalie and this is the first time on here. Im now 40 years old with 3 children and was diagnosed in august 2010 with secondary in the lungs.

My main concern is that im not going to see my children grow up and have children of their own. My children have been told from the start what is happening we have been honest and up front .

I want to know if there is someone out there can tell me how long has a person survived.

thanks

Nat

Joy K

Hi Nat

I am also living with Stage 4 breast cancer and the operative word is LIVING!

There are general statistics as to survival rates BUT they are based on outdated data, outdated treatment options and include all women regardless of their overall health.

Stage 4 breast cancer can be managed and controlled for many years, even decades and is often looked on as a chronic disease.

What treatments are you on?

What does your Oncologist say when you ask this question?

There are many women who have been diagnosed with spread to the lungs who have become NED (No Evidence of the Disease) after intensive treatment and others who have remained stable (no progression) with their treatment.

With love

Joy K

Joy K

Hi Nat

I am also living with Stage 4 breast cancer and the operative word is LIVING!

There are general statistics as to survival rates BUT they are based on outdated data, outdated treatment options and include all women regardless of their overall health.

Stage 4 breast cancer can be managed and controlled for many years, even decades and is often looked on as a chronic disease.

What treatments are you on?

What does your Oncologist say when you ask this question?

There are many women who have been diagnosed with spread to the lungs who have become NED (No Evidence of the Disease) after intensive treatment and others who have remained stable (no progression) with their treatment.

With love

Joy K

Amy

Great advice Joy.  We need to look upon secondary breast cancer as a chronic illness we LIVE with.  I intend to be around for a very long time!

Samantha Cunnington

Hi Nat,

I was diagnosed in Dec 2009 with 2 pretty aggressive lumps in my left breast-whipped it off quick smart but too nasty and it spread to the lungs within 6 weeks of me feeling them initially (2 wks post mastectomy)..i had 8 doses of Taxotere (took me from Feb to July 2010) and even now, 2 yrs on I still having nothing obvious showing up in the lungs. I had spread to the brain in June 2011 and managing that right now, so it can be soooo different for each of us and we (our family) have re-assessed our life and we YES to as many invites as we can get to, try to enjoy quality time together often and as hubby and i know we probably wont 'grow old' together we are enjoying as much great quality time now--its all about quality regardless of whether we know we have a long time or not...treasure every moment, then the longer u survive the more great memories u will have    Stay smiling

Sam 

 

Nattie

Hi Joy

Thank you for your comment and yes i am living to the best i can. I wrote that because my kids are young and i had pictured getting old with my husband and it scares me that im not going to do that.

This is the second time around with taxatere, so christmas has not been the same for two years now. My work has stopped because i work in childcare and would like to get back to that because we are struggling financially.

Currently im stable and my oncologist said that there is other chemo that i can have with herceptin and that i could be on herceptin for up to 5 years.

Im just finding it hard to cope with.

Thanks

Nat

 

kittykat

Hi Nat,

I am 43 years old and have a 5 year old daughter.  Yesterday an ultrasound revealed 'multiple lesions' on my liver.  I have to have a blood test, CT scan and bone scan before seeing the Oncologist again.  I am terrified and devasted.  I thought I was going along really well since my initial breast cancer diagnosis in December 2009.  I am not scared of dying, but I don't want to leave my daughter - she needs her Mum!  Good luck to you, I think your confidence (and mine) will increase as time passes and different treatments are tried and have a positive effect.

Love Cathy X

kittykat

Hi Nat,

I am 43 years old and have a 5 year old daughter.  Yesterday an ultrasound revealed 'multiple lesions' on my liver.  I have to have a blood test, CT scan and bone scan before seeing the Oncologist again.  I am terrified and devasted.  I thought I was going along really well since my initial breast cancer diagnosis in December 2009.  I am not scared of dying, but I don't want to leave my daughter - she needs her Mum!  Good luck to you, I think your confidence (and mine) will increase as time passes and different treatments are tried and have a positive effect.

Love Cathy X

kittykat

Hi Nat,

I am 43 years old and have a 5 year old daughter.  Yesterday an ultrasound revealed 'multiple lesions' on my liver.  I have to have a blood test, CT scan and bone scan before seeing the Oncologist again.  I am terrified and devasted.  I thought I was going along really well since my initial breast cancer diagnosis in December 2009.  I am not scared of dying, but I don't want to leave my daughter - she needs her Mum!  Good luck to you, I think your confidence (and mine) will increase as time passes and different treatments are tried and have a positive effect.

Love Cathy X

MandaMoo

Hi Nat

I can imagine how you are feeling too.  I am 39 with 3 children (5, 7 and 10) - I have numerous lung lesions, a skin met and an enlarged axilla node.  The disease spread for me while on was on FEC and Taxotere for Early BC after surgery and axilla clearance.  As Sam said - it can be so different for all of us.  

I am Her2positive too and currently on the Bolero 3 trial - I have weekly chemo which so far is keeping the disease stable.  I am awaiting results of my latest scan yesterday.  I was completely devastated by the secondary diagnosis and find thoughts of not being here for my husband and children overwhelming at times but most of the time now I just try to focus on the present and enjoy life now as none of us know what tomorrow brings.

There are many women with Her2positive secondary disease who, since herceptin have lived 10+ years - we can talk about this disease as a chronic illness now.  There are new advances all the time.  I remain hopeful - I want to be here for my kids and husband but the best I can do is be here for them right now because I am. 

You are not alone - keep in touch.

Amanda xx

p.s. to answer your initial question I met a lady in the BCNA office who has had lung mets for 7 years - never had a remission but still going strong. :-) Gave me so much hope.

 

Nattie

Hi Amanda

Thank you for ur msg.

I do think of the here and now but get a little down and that day i must have been on a down.

I have been having chemo every 3 wks and the lungs are stable at the moment. I am very hopeful that i will live for quite a long time.

I had surgery and a axillary clearence 7 months ago and still dealing with the fact that i have to put prosthesis in a bra to have breasts. My Husband is gr8 and the kids are gr8 my three are 10, 14 , 15 yrs old. It was hard to tell them the news about my limited life expectantcy as we have been honest with them all the way through.

I have read in the newsletters that there is a women that is living with secondary for the last 13 yrs so that gives me some hope.

Thanks

Natalie

 

MG

I am 39yo with a 4yo little boy. I was recently diagnosed with stage IV with a tumour in my lower spine. Like you Nat I need(ed) to know you could live with this. Mothers shouldn't have to leave their children. After much denial (& the help of my psychologist) I am finally reaching out to a network. This is the loneliest place I have ever been and I would love to connect. I am not good at reaching out for help! At the moment all counts are great (CA < 28) so physically I am fine but there are days that are tough. These odds have to be beaten, right?
Michelle x