Stage 4 TNBC how long since diagnosed???

I have been to many mets conferences and have met many women with mets that have been alive even 11-17 years. I actually met a lady named Rita, who had mets 31 years....amazing and she had multiple sites of mets. Most of the ladies that I have met with long term survival have all been either erpr+ or triple positive. Just checking to see how long those with tnbc are doing and how long you have been living with mets? I just don't know what to think and I keep hearing negative things that I would rather not hear...So shout out if you or anyone you know is "long term" survivor of tnbc. I am at 3.5 years with mets. christi

Report post

9 replies. Join the discussion

Hi Christi, thanks for your post. I can't help but wallow in 'how much longer have I got ??", mentality. Today is actually one of those hard days. Usually I am upbeat and stay positive about it. As hard as it is, God is teaching me to not rely on statistics (I hear that soft tissue mets is average 12-24 months......is that true??), but to rely and trust in him. If it's true about the stats, then I am down to my last 12 months. How depressing is that?????
No I can't class myself as a "long term survivor......but I pray that we will all fail the average stats and live for a long, long time.

Yes, would love to hear from those long term survivors for some encouragement, especially the way I feel today. (I had a neighbour up the road actually ask me today when will I finish chemo???)

Report post

I have been Stage 4, since 1987. (19 out of 26 lymph nodes involved --- had bilateral 'modified radical
mastectomy'; Total Hysterectomy; Chemo & Radiation). {Initial diagnosis, Stage 2: 1976. Lumpectomy with chemo and radiation}.

I think my brain-mets have been around since 1983 (abnormal C/T Scan following MVA); but they were
not 'formally diagnosed' until 2005 / on third recurrence of 'brain-mets' (2006 & 2009). THIS TIME --- have
'opted out' of any and all treatment.

Report post

Ladies: REMEMBER, we are NOT STATISTICS --- WE ARE HUMAN BEINGS!!

We HAVE as long as we HAVE!!

Doctors are not 'G-D' --- even though they 'THINK' they are.

I've already had 2 - six months stays in HOSPICE (1988 & 1990). I was 'let out' because "I outlived MY
diagnosis."

Wasn't supposed to SEE my fortieth Birthday --- Had a 'bash' to celebrate my sixtieth --- a few years ago.

My father's mother died of the SAME kind of Breast Cancer that I have; at age 41.

Report post

Oyvey-

I love that Jewish people do not spell God's name out. I obviously do :) but I love the respect you show by not.
Which is not to say I don't respect Him. Just that I love to see your show of respect and love.

OK- totally off topic. Sorry :)

Report post

Good question and topic. My original diagnosis was 2005, TNBC and my recurrence happened in 2009 with mets to bone, lung. So far, I'm only doing pamidronate for bones but with last scan and dots on the liver and some spread to soft tissue my doc is saying I should probably start chemo soon. I'm just so freaked about side effects but I suppose it's a necessary path. Totally agree that we are not statistics -- my password for this site is "AdvancedLIFE"!!! And, however we spell the "being" up there's name ;-), S/he is GREAT and I'm thankful for any and all blessings and prayers that I receive. Sending out same to all my sisters here...xo

Mary

Report post

I know we arent statistics and I was hoping that this would be more encouraging than discouraging. I hope some others with TNBC will give us a shout out. Someone else put basically the same post on the TNBC.org site too but not too many responses there either. Still hoping to hear from you ladies. As far as statistics. 1st go round, stage 2, they told me I had like a 93% 5 year survival rate but when it spread to lung they told me that dropped to a 9% 5 year rate. But hey, nobody told me I can't be in that 9%. Christi

Report post

We are not statistically. Your sheer will to survive can make you keep going. Be positive and keep up the battle. Blessings. Anita

Report post

The answer to this question is what I seek. Was recently diagnosed with stage 4 metastatic breast cancer to bones in my hip and spine. Am having no pain or discomfort, yet. You'd never know there was anything wrong from looking at me. Oncologist says treating this is no different than treating diabetes. Have only had three injections of X-Geva for bones. Can't help but wonder how long I have left... Any ideas?

Report post

Initial diagnosis of Stage IV Mets to liver and bones in Sept 09. Her2+ ER, PR-. Had one round of chemo and herceptin since. Feel and look great.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Advertisement

Advertisement

Discussion topics

Community leaders