Any long term survivors out there?

I would love to hear some stories on long term surviorship with tnbc everything you hear is so gloom and doom with this subject, I know there are new things around the corner for clinical trialsthat are in the works but I would love to hear from long term survivors that have stayed NED. I realize there are probably alot of you out there that are doing great and just moved on with your lives but I would love to hear from you to have some encouragement,so if you are out there please post know of someone who had tnbc and is doing well. This would be a great x-mas present for all of us.

Denise,
My niece who was diagnosed at age 38 with TNBC has been cancer free for 12 years. My sister who was diagnosed at age 60 has now been cancer free for 11 years. I will celebrate 4 years NED in March, 2012. That makes 3 in my family with TNBC and we are all doing great so far.

I think that since it hasn't been that long since TN was defined, there are a lot of women out there who didn't know they had this type of BC. They may not know about this web site so that may be why there are not posts from long time survivors.

God bless,
Genie

As of November4th,date of surgery, I am a 3yr survivor!

to Grateful for Today,

I can't find the Survivors needed thread in Talk or Forums. Can you tell me what page it is on in Talk or where it is archived? None of my doctors have given me a shred of hope or a pep talk other than to continue with treatments. They just look at me kindly - Perhaps many of you know this look. I got the courage to ask one respected Dr what my future held and she told me my chance of recurrence was 100% and that was that. I am not used to this from doctors and find it has affected my ability to be positive for myself and my family. Not acceptable!  I figure it is my job is to provide myself hope and would love to read success stories. Thanks, Karen

KarenC,

Karen C. and all,

Just noticed Donna posted on   "Survivors Needed" after I posted above.

So now, Survivors needed,   is easy to find on TNBC Talk.....page 1.......with
posts dated today. ( 12/7/11)

Judy

Hi all,

Thanks for your great responses!
I have posted a few times but didn't have my signature , but I do now. The doctor who told me about the high chance of recurrence for me is a wonderful onc, a third opinion, and was responding to my request for honesty so I could plan for my daughters realistically. She is not my treating doc, but is a breast CA specialist and I trust her. She cited an article from the Journal of Clinical Onc- Measurement of Residual Breast Cancer Burden to Predict Survival After Neoadjuvant Chemotherapy, Symmans, Peintinger, et al. The small N of patients like me in this study did not go on to have more chemo like I am doing, and 100% had a recurrence. She said she couldn't find a study showing the recurrence rate for those who went on to to have more chemo after neoadjuvant chemo and surgery.  Are there any newer studies ? I have hope of course, but since day one all of the things that could have gone well have not...First the TBNC diagnosis, then the news  to so many pos lymph nodes after chemo, then the low K1-67 and RCB=3.  That is why I felt the 100% recurrence rate would apply to me, negative as that is. I am truly working on optimism and would like to read anything you all recommend. Karen

I am confused. I finished my neoadjuvant and then surgery. How to know if more chemo is needed? Surveillance is too infrequent for my taste. My onc @ UCLA told me that there are only so many arrows in our quivers, and that early detection is not always best (after initial dx), since the options are so limited for tx. I was told that I have an excellent prognosis, but that recurrence bug just keeps handing around, especially since this is my second time around. What do you think about more chemo and the frequency of surveillance?

Even though surveillance is a snap shot in time, and you could test negative and then have something appear two weeks later, isn't it better to know? The oncs also keep quoting guidelines for surveillance, but it sounds like cost containment to me. Exactly what are all of the risks with scans, anyway?

Hi Rose,

The standard of care is no additional chemo after neoadjuvant and surgery. Most docs will stick with this and begin follow up with 3 month visits. Standard of care does not call for ANY scans with follow-up unless they suspect mets. As we have seen, many oncs do actually do scans but that is not what the ACCN guidelines recommend.The concern with all the additional scans is the radiation and future concerns, i.e. leukemia, as a result. I was initially pretty freaked with the idea of no scans, but I also think it can be false security- unless you look at Donna, where it probably saved her!!

I had residual tumor , although very small, after neoadjuvant chemo. I have opted to enter a study where I will receive more chemo. I struggled with getting chemo now that I might potentially need later for mets- not wanting to burn bridges i might need in the future, so to speak. The oncologist, who is a TNBC expert, felt that doing the chemo now gives me a better overall prospect of not needing it later by killing off any "micro metastases" as he called it. Personally, I think it is still a scary call, but what about this disease isn't?

Not sure if it helps at all...

Deb

Deb- For what it's worth I think you made the right call, too.  In light of your RCB which was so low, I feel you'll do SO well and stay NED forever.  I pray that for you.

Wishing you a beautiful holiday,

Mindy