Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

This question will apply to a select few, I know. But I have to ask.

For those of you who have been NED without meds for over five years, with that "Stage 4" or advanced metastatic breast cancer, do you finally say, "I used to have breast cancer?" Does that day come? Medically, you might have concluded your journey. Politically (SSD, insurance), you might have concluded your journey; social security wants to rid you and you can reasonably buy insurance again. Can one ever say, "I used to have metastatic breast cancer, but that was a long time ago, and it's over now?"

Wondering, and thank you for your responses.

Karen

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Great question KDR! I wonder those things myself, thanks for asking them for me!
Kristin

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Karen, sadly I think we metsters can never say we "used to have breast cancer". If there is one thing the doctors seem to emphasise, it is that there is no cure for metastatic disease. Some of us are lucky enough to live well for years with minimal treatment, but as Steph points out in her latest posting, the road is seldom an easy one.
In Australia, the docs are reluctant to use the NED expression. I am fortunate enough to be stable at the moment with sclerotic bone lesions and liver mets which are described as "almost immeasurable and most likely inactive." Perhaps as good as it gets?
I don't mean to sound negative - this site and other contact with Stage IV women have taught me hope and a blithe disregard for statistics. The ostrich syndrome?
Long may we all live, with the disease if necessary.
Best wishes..... Pam

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

By the way, ARE there any Stage IV women who have been NED without meds for 5+ years?

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Steph's signature shows she went off meds in December, 2008, so she's 5+ years out. She is a rarity, though.

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Andi BB, too

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Having metastatic disease from the get go, I find this a very interesting thread. After my initial surgeries and 6 or so months of chemo, I have remained stable on Herceptin, Tykerb and Xgeva for two years. Right now we are only monitoring my bone lesions as the liver mets were gone after I finished chemo. It is really hard to wrap my brain around the fact the I have 'incureable' cancer, especially with two little ones who need their mama around. I know I am 'lucky' that my disease has responded to treatments, but it is impossible for me to not hold onto the hope that one day metastatic breast cancer will not be a life sentence. I would love to hear from any Stage IV members who are five years out NED with or without treatment.

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Hi Everyone,

I'm not sure if I qualify as "med free" since I am still on Herceptin. However, I have been NED on Herceptin only since my last progresssion in 09. Just creeping up on the five year mark so I hope I don't jinx anything, but I am still here and feeling fine! I just had scans two weeks ago and still NED.

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Hi Karen - I am chirping from CT again…. I will be Stage IV and NED for 10 years in May of this year. I have been on Herceptin from the “get-go” and immediately following my adjuvant treatment, became NED. After 8 years on Herceptin, I stopped it …. just to see….holding my breath and hoping I could say “I used to have breast cancer”. Sadly, the tumors quickly reappeared within a couple of months - so I am back on Herceptin and holding steady. I think StephN has achieved the Nirvana of which you speak - but she is the only one I know at this point. Still and all, I can’t help but think we are riding the crest of a wave of phenomenal research and if we can just hang in there, we may be the beneficiaries of ground breaking results. Only time will tell.
How are you Angel?? Your signature is giving me a smile - Happy New Year back to you. Did your CEA stabilize? What did your genomic sequencing show?
XO

Re: Metastatic Breast Cancer to 5+ Yrs. NED--Question
 

Thanks, all!
Kim!! Hello, angel! Things looks good, CEA is bouncing around, but last PET shows NED. Scans this week and next, stay tuned. I, too, believe we are on a great wave right now. Believe it will happen, hopefully for all of us...my genomic sequencing showed that I have many mutations, none genetic. We have many routes to go if necessary, but hope we won't have to deal with any of that, EVER--
So glad to "see" you again-
Love
Karen