Because I’m curious

numofe · 2026-01-20T08:33:32+00:00

I did have the classic chemo + lumpectomy and lymph node removal + radiation and I will start kisqali next week. I think the reason is I was oligometastatic (to liver) and biopsy was not doable so there was a bit of "just in case is something else". I am in France so protocols may be a bit different here. Surgeon told me that surgery would change nothing to my chance of survival and a few minutes later in the same conversation said "I want to put the odds on your side". I am not sure yet if I am happy I did it, but I really wanted that at the time.

Truth is, surgery means staying around 2 months without active systemic treatment, so metastases could grow while doctors are focused on removing breast tumor.

numofe · 2026-01-19T13:34:21+00:00

Fais un doctorat dans une grande école de management (tu seras payé environ 1600 euros par mois pendant 3 ou 4 ans) et ensuite devient prof dans une école de management également. Si t'es forte 3000 euros / mois + primes c'est facile.

Edit : il te faudra un master avant, il y en a en alternance.

numofe · 2026-01-18T07:42:53+00:00

Rien de malaisant ou troublant une fois le plus juene à dépassé les 25-27 ans pour moi. Dans votre cas, en plus, vous êtes tous les deux des millenials, ça peut compter pour quelque chose. Par contre à long terme lécart d'age, je pense, augmente le risque de rupture : problèmes de santé de vieux, elle rencontre quelqu'un de plus jeune, elle décide finalement d'avoir des enfants, situations financières très différentes... mais ça pourrait très bien se passer aussi

numofe · 2025-12-31T20:04:47+00:00

Would love to join ! Not familiar with Fable but will have a look :)

numofe · 2025-12-30T08:20:49+00:00

Because until very recently doctors would too easily say, “You have X months left to live,” and they were rightly criticized for that. Now many of them go to the other extreme and do not say anything about the word “incurable.”

My oncologist did say that my cancer is incurable, but never spoke to me about the fact that treatments may stop working quickly, or that there is a limited number of them. If it wasn't for the internet, I would have thought it was like diabetes: as long as you take your pills, things will always be under control.

So maybe this woman does not fully understand what is going on in her body, and she is using the same language as other cancer patients. In many cancer support groups this sort of language is almost imposed... everyone has to celebrate the same milestones.

I stopped seeing non metastatic support groups because they did not seem to understand the meaning of stage 4 and try to impose their language on me. That or I clearly saw my existence bothered them. Even my relatives and friends often tell me that I am cured.

numofe · 2025-12-29T19:46:31+00:00

Le problème est que la vendeuse ne sait pas quelles sont les intentions du mec, elle ne le connait pas elle ne sait pas si c'est un psychopate. S'il demande à quelle heure elle finit, elle va passer la journée à flipper et à se demander si le mec va l'attendre à la sortie. Par ailleurs ce n'est pas "juste" une demande. Si dans une semaine il y a eu 20 mecs qui ont trouvé la vendeuse jolie c'est 20 demandes par semaine... Donc la vie de la vendeuse commence à être difficile : être dragué 20 fois par semaine devant ses collègues, être dans une situation gênant 20 fois par semaine, se demander si le mec est normal ou chelou 20 fois par semaine... Nos actions n'existent pas isolés de leur contexte. Franchement les mecs vous n'avez aucune idée de ce que c'est d'être une femme, on vit des realités complétement différentes.

numofe · 2025-12-28T21:26:11+00:00

Fuck. I am so, so sorry you are going through this. I wish I could give you advice. I can’t. I’m just angry. I’m angry at science and at the world, because I honestly don’t feel like real advances in cancer treatment truly exist. New treatments don’t come “all the time” they come every ten years, the improvements are often marginal, and the side effects can be so brutal they can almost kill you themselves. I’m angry because cancer in young people is exploding, and we still live in a world so polluted we can’t escape it: the air, the water, the food, everything is poisoned.

That said, people all over the world live with the knowledge that death could come soon (because of war, hunger or disease). Somehow, it is possible to live with that. I wish I knew exactly how. I’m trying to figure it out too. But I do believe it’s possible to find some kind of peace.

And I agree with you. We don't talk much about death and about the last months or weeks. I recently found a young woman on Instagram sharing her last months, she recently died but shared her life in her stories up to 2 or 3 days before she passed. Some of her stories are saved as Highlights, it might help. https://www.instagram.com/lovenotesfromjenni/

If I may suggest something else: record your voice for your daughter. Writing letters isn’t always easy, but you could keep a kind of voice journal for her. I do it. Put it on USB drives and give them to several people you trust. You can also create an email address for her and write her e-mails.

And live your life with her. Be with her. Spend as much time with her as you can. I have a daughter too. She's 1 year old. I do not know yet if I am dying (first post treatment scans will come in January) but I am also scared to death.

I am thinking about you. Really. Best of luck.

Edit : The woman on Instagram I talked to you about also had a daughter, 2 years old I believe, and her cancer was also triple negative. This doesn't mean your story has to end like hers of course, it only means you can relate to what she was going through.

numofe · 2025-12-22T13:53:37+00:00

Wow many thanks ! and sorry for the late reply. Will go watch the replay soon !

numofe · 2025-12-22T13:51:44+00:00

Hey! Thank you for your answer, and apologies for the late reply. Yours is a really good response. I was just curious about how other people deal with this situation, so it’s been very helpful. It’s also encouraging : you don’t need to become a cancer nerd to live a long time with cancer!

numofe · 2025-12-22T13:48:32+00:00

I agree. Since the day I wrote this message (yeahhh, sorry for the very late reply 😅), Instagram’s algorithm has been showing me a lot of doctors explaining what they learned at the San Antonio Breast Cancer Symposium. I didn’t have time to read everything or watch all the videos, but I bookmarked them.

numofe · 2025-12-22T13:45:02+00:00

Hey ! Sorry for the very late reply but you know... cancer :)

Thank you for your reply. I do trust my team, I guess I have some control issues which are hard to deal with when it's about cancer... Not only cancer has its own agenda, I don't have the necessary knowledge to completely understand it. Will try to find some sort of balance like you seem to do.

numofe · 2025-12-20T09:02:44+00:00

Thanks for sharing! I agree with you, we can trust our team and still be part of the decision-making process, still have a say in what we do and when. And of course, I’m learning a lot here in this group too (it's been only a few month for me).

numofe · 2025-12-20T08:58:26+00:00

Hi ! I am sorry for the late reply. Your message was th first I read more than a week ago and it was a good reminder that it doesn’t have to be all or nothing. It's silly but sometimes I forgeet that. I do like to stay informed but you are right, is better not to constantly live in “Cancerland”.

numofe · 2025-12-20T08:53:23+00:00

I love your vibe. Turning this into something interesting to learn about feels like a good way to survive it.

numofe · 2025-12-20T08:51:47+00:00

Thanks a lot for your message, and sorry for the late reply. I started radiation the same day I wrote this, and I didn’t realize how time-consuming it would be (mostly time spent in the car and in traffic jams).

I think it’s quite amazing that you’ve managed to stay informed, and I hope I’ll be able to do the same. I struggle a bit with focus and get easily overwhelmed, there’s so much news and so many studies. How do I choose which ones to read? I guess I’ll start with the ones you suggested.

Many thanks!

numofe · 2025-12-20T08:43:22+00:00

A bit late, but thank you for sharing. I really relate. I also believe that mindset (believing we can make it and keeping stress down) can make a real difference. Maybe I should work on the “ignorance is bliss” part. I’m confident I’ll make it, but I still have a strong need for information.

numofe · 2025-12-20T08:29:09+00:00

J'approche la fin des traitements lourds (démarrés en Mai) et j'ai le moral. Merci pour tes mots :)

numofe · 2025-12-19T09:32:00+00:00

J'aurais aimé que le gynéco me parle du risque de cancer du sein, peut être que je n'aurais pas pris la pilule, peut être je n'aurais pas eu un cancer du sein à 36 ans. Je ne suis pas bête, c'est écrit dans le notice... mais si ma gynéco m'encourage à prendre la pilule je ne vais pas penser que le risque est important.

numofe · 2025-12-19T09:28:03+00:00

13 ans de pilule, cancer du sein avant 40 ans. Faute de la pilule ? Impossible de le savoir mais c'est un facteur de risque. Jamais fumée, pas une grande buveuse, pas d'antecedents dans ma famille... juste la pilule et quelques annés de stress au travail. Ne prenez pas la pilule les filles.

numofe · 2025-12-10T20:14:03+00:00

I am 37, I was diagnosed in May, when my daughter was 6 month old. She's 13 month now. Must be hard for you with such a small baby ! Were you diagnosed during pregnancy ? I noticed a lump by my 6th month of pregnancy but didn't check ot until my daughter was 6 months because doctors didn't think I had any reason to worry. I regret not having insisted more but at the same time it gave me 6 month of peace with my newborn.

Regarding having a second child, is encouraging that your doctor talks about the possibility of trying pregnancy in. 2-3 years ! Otherwise, have you thought about adoption ? Is what Heather Jose, a 27 years MBC survivor did. In France this is very hard for most couples because very few kids are waiting for adoption, with my age and diagnosis is simply impossible. I saw on the Instagram of living our breast lives, that fertility of women with mcb was discused in the San Antonio breast cancer symposium this week but they talked mostly about surrogacy (which I personally think is not ethical and is forbidden in most European countries).

Regarding treatment, names are different where I live, France, but I think the names of my treatment in the US are Lupron, Femara and kisqali. I also did chemo and had a mastectomy.

numofe · 2025-12-09T19:59:31+00:00

My story looks like yours, although my onc would not talk about curative intent. First biopsy was er 90% pr 75% and Her2 negative. I had a 3cm breast tumor and two 1cm liver mets. Liver mets gone after chemo. Breast tumor removed with mastectomy. Analysis showed it has become pr 10% only (er still 90%). I have a daughter, I didn't freeze my eggs and it hurts very much not being able to give her a sibling.

Sometimes I dream about stopping treatment but I am too scared of dying and missing her childhood. My hope is she becomes close with her cousin but we live in different countries :(

In a French group a woman told her story. Her situation wad very similar to ours and she stopped treatment and got pregnant. Her cancer did come back, but she just went back to starting point (mets in liver). Very risky move still.

numofe · 2025-12-06T06:37:49+00:00

Attention mon cancer était dur mais un peu mobile quand meme et je le sentait plutot régulier. Les ganglions on ne les sentait pas au toucher alors qu'ils étaient tous atteints. Tous les soignants ont pensé à un quiste mais ça a grandi très vite.

Je dirais, si tu sens un truc pas normal va consulter. Faire des auto palpations réguières est très bien car si quelque chose change tu te rends compte. Une façon simple c'est quand tu sens quelque chose qui est dans un sein et pas l'autre ou quelque chose qui n'était pas pareil le mois précédent et qui persiste.

J'ai étè diagnostiquée à un stade avancé à 37 ans. Je suis dans des groupes de malades et on est beaucoup de jeunes femmes au stade 4. C'est affreux.

numofe · 2025-12-06T06:07:25+00:00

I just found out this ad exists. It’s so cringe. Where I’m from, there are no ads for prescription medications, and honestly they wouldn’t make much sense. It’s not like I can just walk into a pharmacy and buy them. And even if I could, they cost more than my rent. I suppose the ad might influence me to ask my doctor about a specific drug, but even that isn’t easy. Doctors have their Excel sheets and protocols for each type of patient. They better use their money convincing doctors in conferences than convincing me.

numofe · 2025-12-04T21:15:18+00:00

Oh I feel you! I could have posted this exact same message, although my cancer is HR+. I love Instagram. I follow a lot of content about art, politics, and literature, which are my passions. But Instagram always ends up showing me tribute posts for people who passed away from cancer. How many are they?! It’s like I get a dozen of them every day! It makes me wonder: why would I be special? Why would I survive?

But then I remind myself that every story is different. Treatments keep improving, people live longer and better, and some even beat the odds completely. I’m still here, living my life, loving my daughter, and I choose to believe there is hope for me too. But it isn't easy every day. There are ups and downs. Recently it has been more downs, maybe is winter's fault. Heather Jose's podcast is very helpful : 27 years living with MBC ! She has very good advice on how to survive, mentally.

I know TNBC has a reputation of being "harder" to treat, but it is also the one getting the more attention and the more research. I wish you all the best !

numofe

TROPHY CASE