Calling all TNs

It seems to depend more on response to chemo than stage at diagnosis.

Roughly 30% of TNBC patients get a pCR. I know that the recurrence rates are about 10% for people who get a pCR, and more like 40% for people who do not have pCR. Nearly all TNBC recurrences will be within the first 3 years, and after 5 years recurrences are vanishingly rare. (Of course, one can always develop a new primary.)

mountain Mia, I am the same. We can't tell if we had pcr because my tumo was removed fully before chemo and radiat. So it's good to have a smaller tumor, but since pcr is a sign of a great response, we can't know if we would have had that with a larger tumor. So while it's good it was smaller it takes away a piece of information that could have been reassuring. I don’t think it’s equivalent to pcr. There is recent work on tils that suggest that a high percentage of them in tumor ( more than 50%) is associated with a pcr. I hang on to this since my TILs were 70-80% according to pathologist.

Unfortunately, if you have tumor removed prior to chemo, there is no way to know if you would have pCR.

santabarbarian I have a question for you. My wife, Nat and I are walking/hiking over 20 miles/week. Nat is a big work out person and this activity is so good for our spirits!! Her RBC’s are dropping of course because of chemo and we don’t want to go so low that we have to have a delay. What has your research shown about aerobic activity during chemo?? Our diet is nutrient dense, high protein and iron but we do have to be careful of too much fiber due to bizarre diverticulitis episode during AC 9 weeks ago. Thanks.

Santabarbarian you rock!! Great info!! Our workouts are so important to us. Thank you for your quick response. We r following in your footsteps!!! Shooting for that cPR in October!!

MtnMia is excellent info and inspirational as Nat’s tumor has basically disappeared with the AC chemo!! So we are very hopeful the Taxol will continue to destroy the tumor!! Thank you for your input and God bless!

Santabarbarian we r off for another hike!! She is charged up... maybe the steroids 😜

Thank you both!!

I think the latter possibility (that it looks good on MRI but turns out that there are micromets in tissue) is something that can happen. My MRI appeared perfect but they did not want me to count on it.... Though MRI looked great, my surgeon said, "Pathology trumps MRI, so we need to do the surgery and see what pathology says."

moth, thanks for the video. Extraordinary and right up our alley

Thank you.

MountainMia, I had surgery first, then ACT, then a re-excision, then rads. My MO told me that my recurrence rate is 8-10%. I’m 3 1/2 years out.

ucfknights, yes, residual cancer that is too small to light up in the MRI. Live cells that survived the chemo.

moth. So we go to the cancer treatment centers of America. Nat was found to have the BRCA2 gene. The CTCA geneticist stated that without a DMX Nat’s chance of recurrence was at 45%! But with the DMX she said it would be less than 5%! Our MOn concurred that the DMX is a must with BRCA2. I like the less than 5% if that is the case.

Wow that's cool Mia!

9 YEARS NED... I haven't posted in a long while, but I want to give hope to all those facing triple negative breast cancer. In two weeks, I'll officially be 9 years out. There have been a couple of scares, but both cases had absolutely nothing to do with cancer returning. When I first came here, I was terrified... looking for answers... looking for hope. In the time I was extremely active on this thread, there were only a couple of people who posted being several years out, and I was so very thankful to hear from them! So now, I'm one of them and I've vowed to post here once in a while as long as the good Lord allows me to walk this earth.

For those going through this, PLEASE remember... there are thousands of us out there who have battled triple negative and are living full lives without cancer. The vast majority of us who are on the other side don't usually visit these sites but once in a great while. Tips for you... eat, sleep, PRAY, surround yourself with positive people, take vitamins that help ward off triple negative, DRINK PLENTY OF WATER, read up on YOUR diagnosis and educate yourself because that education is ammunition in fighting! I have faith in God, and I know He is always there to help me (as He will with each of you also). God gave me so many wonderful people to help guide me through cancer... from my church, to my docs, to THIS ONE WEBSITE... specifically this ONE thread. I pray for wisdom and comfort for each and every one of you going through this battle... including the spouses... hang in there... the sun will shine again.

I also have found someone IRL (Ha! I am now using millenial speak) who has TNBC. She is a lovely woman who visits the same winery that I do. In fact, one of the owners of the winery introduced us because we had both told her of our situations. The other woman is just a few months behind me in a very similar treatment program, so we've chatted often about side effects and other things. We both commisserated over not being able to enjoy the wine, but we still love the winery, the people, the live music and everything associated with it so we both still go. It is comforting to have a real person in person to make a connection with who has this same thing, even if it just making eye contact across a crowded room.

HockeyChick - I wish there was a magic answer to help you, but for me, it just took time. You just finished treatment and now you feel like you're doing nothing to prevent it from coming back. I think it's just a natural part of the process. Those that have not experienced a cancer diagnosis firsthand don't get this part of the process (in my experience anyway). Once you're done with treatment, they think "oh good, it's all over now". But it's a real mental battle for a while. For me, time really helped. I am also just about 9 years out and now it's not the first thing to enter my mind when I have a strange symptom. Give yourself a break and allow your mind to work it's way through the recovery. Time will help.

Hugs,

Kathy