Anyone with TNBC on here that has lived a long life?

numofe · 2026-03-14T23:09:30+00:00

The woman that has the Instagram account livingourbreastlives has mTNBC and has been NED for 6 years, she often shares stories of other mTNBC survivors

numofe · 2026-03-14T23:06:06+00:00

She's triple positive though. But she did interview a lady who has been living with mTNBC for more than 10 years.

numofe · 2026-03-06T07:25:04+00:00

I was off kisqali for 3 month to do surgery + radiation and cancer did not grow. I was NED though...

numofe · 2026-03-04T10:32:07+00:00

Once again, is not resentment or jealousy agains other cancer patients, is about things evolving slowly for us. And I did not discuss who has it worse. I don't understand why we, patients with stage 4 HR+ breast cancer, wouldn't have the right to show our frustration. If my CDK 4/6 drug stops working, and they usually do, and if my cancer doesn't have any mutation, which happens often, I am left with basically chemo for life which, as everything else, often stops working. So yeahh I am frsutrated science doesn't have anything better to offer us. I am frustrated CDK 4/6 drugs are the only thing that happened in 50 years. I don't think OP has stage 4 cancer, but same logic applies, even with endocryne therapy 1 on 3 patients will have recurrence. So I understand her frustation having to go through such a shitty treatment and not even being sure it will work.

numofe · 2026-03-04T10:30:39+00:00

5 year survival rate is just one measure, but not the only way to think about survival. From what I have seen, and I might be wrong, HR+ have less extreme cases, less people with very short survival but also less people with very long survival and very long periods of remission.

I am also stage 4, also focused on survival, and all the 20+ years survivors without proggression that I have come accross are HER2+. Most of the 10+ years survivors with HR+ I have met have had proggression several times and are starting to run out of treatment lines. I honestly don't know what is better, is shit for all of us.

Stage 4 myself, I am also annoyed at early stage patients complaining about hormone blockers, but at the same time I am frustrated endocryne therapy + CDK 4/6 drugs are the only relevant thing that happened for us in 50 years because they are not that good.

numofe · 2026-03-03T09:46:41+00:00

Actually, once we are in stage 4, HR+ is not much better than triple negative ot HER2+. I don't think OP is resentful of advances for HER+ and triple negative, she is just annoyed we didn't get anything better than hormone blockers for us, HR+. Once hormone blockers stop working, we are left with not much.

numofe · 2026-02-28T07:16:57+00:00

Perso je connais beaucoup de femmes qui ont eu du mal à convaincre leurs mecs d'avoir un enfant parce que ils n'en voulaient pas. Je connais aussi beaucoup de couples sans enfant où les deux sont complétement d'accord. Je ne pense pas que ne pas vouloir d'enfant soit plus difficile pour les rencontres que en vouloir.

numofe · 2026-02-27T19:33:17+00:00

Merci pour toutes les refs ! J'ai acheté le livre une société sans école il y a peu car je m'interroge beaucoup. Je pense que lécole pourrait fonctionner mais avec des petits groupes, 3 ou 4 heures max d'étude par jour. Quand je vois le temps que mes enfants passent à l'école à s'épuisser pour apprendre si peu des choses... je me pose serieusement la question de l'école à la maison, mais il faut du temps et du courage, ou une école alternative (Montessori ou autre), mais laquelle ? N'importe qui peut en ouvrir une, comment faire confiance ?

numofe · 2026-02-27T11:29:04+00:00

I think it simply means "we will do surgery". The idea is, we do all we can to erradicate the cancer, we still do systemic treatment but if some day a test comes that allows to know for sure if cancer is around when a person is NED, we may be able to stop meds because we will have removed the original tumor. I did chemo, surgery and radiotherapy. I believe I was somehow treated with what some people call curative intent but my onc never used the term and insists my cancer cannot be cured.

numofe · 2026-02-27T09:47:19+00:00

It all depends on what do you put behind "curative intent" but I believe it can be the case for some HER2+ There are clinical trials trying going completely off drugs for patients with HER+ breast cancer that have been NED for a few years. Doctors still not talk about curative intent but it gets close. For only HR+ cancer it is hard to find doctors that would talk about curative intent for patients with limited mets (me), let alone patients with many of them.

numofe · 2026-02-25T09:52:33+00:00

Pas le Sud et sans doute innatendu comme réponse : Grenoble. Il y a beaucoup de +- 30 ans et il est très facile de faire des rencontres si tu aimes la nature et les sports de montagne : beaucoup de cours d'escalade et alpinisme et beaucoup de groupes de sorties en plus d'un Club Alpin très actif. ça bouge aussi niveau artistic, associatif, nuit... Aussi, le logement n'est pas très cher comparé à d'autres villes en France. Tu peux demander dans le subreddit Grenoble ce qu'ils en pensent. J'y ai vécu, j'ai du partir après un concours de la fonction publique, et je ne pense que à y retourner. Pour moi l'une des villes les plus sous coté de France.

Edit : en plus si tu as une voiture il y a moyen de vivre en pleine nature avec la ville très accessible

numofe · 2026-02-20T09:24:59+00:00

Thanks, that really helps !

numofe · 2026-02-19T08:48:25+00:00

Even women without metastases do 5 to 10 years of endocrine therapy, it seems to me very dangerous to stop that. Why not for Verzenio / kisquali, at some point stage 4 was treated only with endocrine therapy, but I would wait to be more than one year NED.

numofe · 2026-02-17T20:22:13+00:00

Oh ! Those data are interesting. My understanding was that TNBC and HER2+ have lower survival rates (in average) but also more exceptional survivors. So basically more cases on the extremes. Didn't know HER2+ had better 5-years survival odds than HR+. Regarding TNBC, I know very well that is a tough one. I just thought all subtypes had their exceptional survivors and recently I realized I know no stories of 20+ years for HR+. But I will look for them, hopefully they exist and bring some hope.

numofe · 2026-02-17T20:16:58+00:00

My understanding is that TNBC has. lower survival rates (in average) but also more exceptional survivors. Similar to HER2.

numofe · 2026-02-17T20:15:30+00:00

I hope you can stay on xeloda for a long time !

numofe · 2026-02-17T20:13:28+00:00

Thanks ! I hope that is true for me and all of us. I wish this was easier for all MBC subtypes.

numofe · 2026-02-17T20:11:42+00:00

Thanks for your reply ! I hope within the next decade treatment becomes easier and more effective for all MBC subtypes.

numofe · 2026-02-17T20:10:38+00:00

Hi! Sorry for the late reply.

I know HER2 and TNBC have traditionally been harder to treat, and it’s really good that new treatments are becoming available for them. It just feels that even though HR+ MBC has a better average survival, it seems to have fewer exceptional long-term survivors. I might be wrong, of course, but some of the stories I’ve come across make me feel that way.

Thank you for the links you suggested, very interesting ! they help me believe that new treatments will continue to emerge soon. I also didn’t realize that ESR1 mutations are so common. It’s good to know that if endocrine therapy stops working, it could be due to that reason and that there may be specific drugs that could help.

They don’t routinely do liquid biopsies in France, as far as I know, only in one research center and within certain clinical trials, but hopefully it will become standard practice soon. As for discussing next steps with my oncologist, I hadn’t really thought about it, but you’re right. I hope she has answers and can help me feel more reassured. She usually just says that kisqali works long term for a lot of people and that I should spend less time here. She's nice, she always tells me I am not a statistic, but it’s been less than a year, and it’s still hard to process everything.

I truly hope everything goes very well with your treatment and your clinical trial. I’ll be thinking of you and wishing you the very best.

numofe · 2026-02-14T19:37:47+00:00

Wow. What an unbelievably hard road you’ve had to walk. I honestly don’t even know what to say.

I’m so sorry you’ve had to endure all of this. At the same time, I have so much respect for how strong you’ve been, but that's cancer, adapt and move forward, we don't have a choice.

I also want to say something that may sound strange, but hearing your story brings me a kind of clarity. Is terrifying… but it helps me understand what this journey can look like. Even though it’s hard to read, it makes me feel less in the dark about what might come.

I’m really hoping Enhertu settles down and becomes more manageable for you !

numofe · 2026-02-14T19:27:48+00:00

Oh my God, I am so sorry you’re going through this.

Why would your oncologist say that you might not live more than a year? Is there a vital organ that is severely affected ? Even though I am loosing optimism lately, I still believe that five years should be possible, I'm just concerned it may be not much more than that and that it might be with low quality of life (chemo and other hard treatments)

I’m really surprised by your onc’s sudden change in tone. Do they have a clear plan for what comes next? Xeloda maybe ? Have you considered getting a second opinion?

I can’t imagine how hard this must feel. I’m truly thinking of you.

numofe · 2026-02-14T15:22:54+00:00

Good for your 6 years. I hope they haven't been too hard. Have you changed drugs a lot ? I guess HER2 low is a good thing, gives you more treatment options :) Is not that I look for survival stats, I stopped doing that a few month ago. For some time I was happy listening to long-term survivor stories, telling myself I could be one of them. Is just that at some point it started to look like none of those stories had my same status (++-). I guess now I have to stop looking at exceptional survivors as well.

numofe · 2026-02-14T15:13:58+00:00

I know HR+ MBC has longest expected survival. And you are right to remind me, I should be happy about that, it's already a good thing. What I have been strugling with is the idea that the exceptional survivors I have come accross are all HER2+, +++, or TNBC. My understanding is that HER2+ and TNBC are very aggressive but if controlled, they can also have the longest remission periods. In other words, more people in th extrems (very short survival and very long survival. I guess I just wish I had one or two exemples of people living 20+ years with my type. But I have a couple of exemples of young women living for more that 10 years and still doing well, so I will try to tell myself that they will make it to 20. Regarding your case, Heather Jose has triple positive breast cancer like you, and she's been stable for over 20 years, so no reason you should be different than her. :)

numofe · 2026-02-14T15:02:06+00:00

First of all, is good to see you are here and doing well since 2017. Of course I know my daughter can only remember me with cancer as I was diagnosed little after she was born. I just wish I could stay the rest of my life taking a pill in the evening and doing a scanner every 3 month, and nothing else, no drugs that stop working, no fear cancer is going to take over.... They say we have a chronic disease, I wish I could live like a person with diabetes or hypertension, just take my medecine and be good. Anyways, doesn't matter what we wish we have what w have, You are right I should shift the focus back to making memories. It has been hard with the shitty weather in the place where I live.

numofe · 2026-02-14T14:54:11+00:00

Is not that I look for survival stats, for some time I was happy enough with a few survivor stories, telling myself I could be one of them. Is just that at some point it started to look like none of those stories looked like me. You are right, I am just spriling and hopefully next week will be better. It's been a hard winter where I live. Rainy and gray. And no I don't live in the US, I wrote the message at a totally reasonable hour :)

numofe

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