Calling all TNs
Comments
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jrominger, the way I understand it is this: one of the few "benefits" of TNBC is that it typical responds well to chemo. When it doesn't, since there aren't many other weapons to use against it, things can go badly. If a patient has neo-adjuvant chemo it's easier to see if there is a good response. Either the tumor shrinks and by all evidence disappears (pCR, or pathologic complete response,) or it doesn't.
If surgery is done before chemo, as for me and Farfalla6 above, there isn't a way to tell if the chemo is successful or not. It isn't actually a pCR, because pCR refers specifically to the effect of chemo. I have no evidence of the effect of chemo. It might have been effective or not, and I won't know until I either have a recurrence or die without one.
Here's a definition of pCR. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/pathologic-complete-response
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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!!
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My mom's surgery is the 19th and i am already stressed to the max.. i even have chest pains and I'm not the one going through it. We had MRI Monday and tomorrow is for the results. How accurate is the MRI after chemo prior to surgery? has anyone had something show up on the mri then nothing in pathology or nothing show up in mri but something in pathology? Thank u
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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."
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re exercise during treatment - do as much as you can!
Video about an ongoing research project in Australia on this https://www.youtube.com/watch?v=ffgAVrANmS40 -
moth, thanks for the video. Extraordinary and right up our alley
Thank you.
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santabarbian- what’s micromets? Like residual cancer left in the breast?
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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.
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LoveMyVizsla, I'm curious about your recurrence rate you site. Do you mean probability of recurrence? How was that determined?
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ucfknights, yes, residual cancer that is too small to light up in the MRI. Live cells that survived the chemo.
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LoveMyVizsla, I wonder how the MOs arrive at those #s.
Recurrence rates for my stats on Predict are a bit higher & I had a smaller tumor https://breast.predict.nhs.uk/tool
I like your numbers better
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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.
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Friday night I met a gentleman from my community who is about 2 years since his diagnosis with TNBC. Of course I have all of you here, but this was the first time I've spoken IN PERSON with anyone who knows anything about TNBC (aside from medical personnel, of course.) We hugged, we hugged again, we hugged again. It was an oddly intimate moment. He is the friend of a friend, so I hope I'll be able to visit with him more.
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Wow that's cool Mia!
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Hi all! I know I’m don’t comment a lot anymore but I follow many threads. This is the one I really depended on in the beginning. Two years ago this week I was doing AC chemo and losing my hair and my sh$t! Yesterday I said goodbye to my firstborn at college and cried. I saved the real sobbing for the shower!
I was proud, scared, excited and sad. I will miss that kid so much, but I am so grateful that I am here experiencing these milestones. At the same time I grieve for those who will never have these experiences because of this monster of a disease. It was just such a tangle of emotions! I’m at the point where some days I don’t think about cancer. But I have days where the fear is a knot in my belly.
“Don’t cry because it’s over, smile because it happened”. Dr, Seuss
I tell myself this as I see the door closing on my son’s childhood.
I just needed to get all that out!!
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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.
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Bravo VL22! It's a great moment of combined sadness and joy! Wishing your DS all the best in college!
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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.
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cc4npg thank you for posting and congrats on 9 years. I finished Xeloda treatment 2 weeks ago and I'm really struggling. Terrified now that treatment is over that the cancer will come back. I'm having a really hard time not going to those dark places. I just don't think I will be one of the "lucky ones" that will survive this. I know I shouldn't think that way but its hard not to with all the scary information out there. I hate not having control over this.
Anyone with advice on how to move forward and not let me brain got to those dark places, let me know. I find educating myself on this disease gives me more anxiety. The information is scary. I'm tired of hearing how prognosis is poor for TNBC.
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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
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cc4npg and Ksteve. Thank you for posting and giving us all the positive vibes!! We are grateful. My wife is sitting in the chair as we speak getting Taxol #5 of 12. We WILL be where you are in 9 yrs by God’s Grace!!!
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Hockey Chick what helps me mentally: doing those things I can do, to help my own health, enjoying today as much as possible every day, and connecting with my loved ones.
I take a ton of supplements eat a mostly vegan whole food unprocessed organic nutrient-dense diet, <20% fat. Fish, and infrequently meat or dairy. I exercise intensely. I take melatonin and metformin and many McClelland protocol OTCs. I'll do anything that gives me another ~2%+ survival benefit, as long as it won't hurt me!
I feel great doing this program (bonus!) and it makes me feel satisfied I am doing my utmost which I owe to myself, and which I feel I also owe to my sisters less lucky-- not to squander my luck to be here but try to enhance it by good practices. I also have a few complimentary therapies I do. I am hugely grateful to have the means to do things not covered by insurance, like high dose C, which I feel have helped me a lot.
I am also lucky to not be an over-worrier. I believe my body to be healthy and cancer free and I try my best to help it stay that way. While knowing I might recur, so also not putting off fun and living, in case.
Try to do the things that make you feel well-tended, healthy, happy, and well -- which my be other things than mine-- and the hours spent in this mode fill up more of your day, and displace the worry.
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HockeyChick, I think all of us have trouble at times staying out of the dark places. As others have said, time will help. But while you are waiting for time to work its magic, you might find it helpful to talk to a social worker or therapist who is experienced in working with people who are facing the same kind of fears that you have. During my treatment, I was able to work with people who taught me how to think and act in ways that help me to keep fear from taking over my life. That doesn't mean I am never afraid. But when I am, I know what to do to get past the fear. In my case, one thing that helps a lot is giving my brain a stern talking-to. Like this: "Brain, that is just crazy talk! We are NOT going to go there!" That works for me because I tend to think irrational thoughts when I am afraid, such as "you were unlucky enough to get TNBC, so you will also be unlucky enough to not survive it." Which is, of course, crazy. Lots of people do survive TNBC. I also feel better if I do something that I find relaxing and pleasurable when fear is trying to take over.
What works for me may or may not work for you, so I can't tell you how to deal with your fear. But there are many ways of dealing with fear and anxiety, and if you can figure out which ones work best for you, you may be able to stay out of the dark places altogether, or at least scramble out quickly if you find yourself in one. Good luck! And ask for help if you need it -- don't let this make you miserable.
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I don't recall hearing of any other men with TNBC. Although no one wants to join this "club," it's nice that you unexpectedly found a kindred spirit, Mia.
Lyn
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Forgot to post! August 18th 5 YEARS in remission!!! Yea!!!
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Hooray angelfaith! Congratulations! I wish you many more years of good health.
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Me too angelfaith. Hoping to be in your shoes in 2023!
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Wonderful, Angelfaith!
Lyn
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.3 years today since my final rads appointment. NED ever since and appreciating life every day. And starting to really believe that it won’t come back. Good luck, love and positive healing thoughts to every one of you going through this. It is hard work
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It has been quite a while since I have posted. Haven’t even visited for a while. I will be 7 years in December. I was 66 at diagnosis & will soon be 73. Life is good. I exercise some but not as much as I was doing. Arthur & his ritus is part of my problem. But do what I can. This is doable. Keep a positive outlook as much as you can.
Best wishes to All,
Marsha
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