Triple negative - newly diagnosed and looking for your experiences

@leolion811
My hat is off to you. Three times in 7 years is just too much. Hope you won’t have to go through that ever again. Hugs.

I am a 3 time TNBC survivor ( occurred 3 times in 7 years) 2 & 1/2 years out from last diagnosis. 5 different chemos, 50 radiation treatments, 33 Proton Therapy treatments total for all 3.

First, I would insist on Proton Therapy instead of traditional radiation. Ask for newer chemo choices instead of the “Red Devil” and “Gemzar”- those put me in hospital. Make sure you take someone with you to every oncology appointment as well as chemo session.

Where are you located in the US?

Join as many TNBC groups on FB- invaluable information in those groups and last but not least, look out for lymphadema from radiation & fibrosis. It’s a horrible side effect from radiation. I deal with it 24/7. Any questions, please contact me. I wish I had known then on what I know now. 🙏🏼🙏🏼

Well this is my experience. Sorry its not all pink and positive. Stage 4 triple negative age 36. I wish you the best, but be prepared just incase.

I didn’t get sick from chemo. Not the first three months, anyway. No vomiting in trash cans, no days curled around the toilet. My hair stayed, too—still brushing it out in the morning like nothing had changed. I remember thinking maybe I was lucky, maybe I’d be the exception. I know better now. Losing your hair isn’t just a side effect; it’s proof the drugs are hitting something. When it doesn’t fall out, when you don’t feel sick, you start to wonder if it’s working at all. And when the chemo fails, you understand that the quiet was a warning, not a blessing.

The worst sickness wasn’t from the drugs. It was the in-between: that stretch from the last infusion to the three-month scans. You walk out of the center feeling “fine,” and then you live in limbo. Every twinge becomes a question. Every night you lie there bargaining with your own body—please let it be shrinking, please let the numbers move. Nobody tells you that waiting makes you sicker than any infusion ever did.

You get attached to the nurses in ways people outside don’t understand. They’re the ones who find a vein when you’re dehydrated, who bring you your favorite blanket without you asking, who compliment you on your new wig or eyelashes and actually mean it. You confide in them because they’re there every week, steady. And then a scan comes back bad, or a treatment gets pulled, and you see it in their eyes first—that flicker of sadness they try to hide behind a quick “We’ll figure out the next step.” They’ve seen this movie before. They know what the pause means

I’ve had three treatments fail. You show up on infusion day—book in your bag, snacks, the chair you always sit in—and they tell you you can’t go back today. Not because you’re too sick, but because insurance hasn’t approved the new plan yet. You sit there, port accessed and ready, and then they have to flush it and send you home. That day, the day you don’t get treatment, makes you feel sicker than the drugs ever did. The helplessness settles in your chest and stays.

The whiplash of this journey is absolutely exhausting. After cycling through three different treatments, I finally had a scan that showed no progression—a brief, beautiful moment of relief. But that hope was brutally short-lived. The latest scans reveal the treatment failed shortly after that good report, and it has now spread to my chest and neck. To be met with failure after failure leaves me feeling heavy, devastated, and fighting to find my footing in the ruins of what I thought was a victory.

They don’t tell you how scary it is to watch the room change. The infusion center becomes a small, strange family—same faces week after week, same jokes about the bad coffee. And then someone’s chair is empty. Then another. Some of them were on the same drug as you. You feel guilty that yours is working, and guilty again when it stops. Survivor’s guilt in a recliner, hooked up to a pole.

Chemo doesn’t just work. Not for everyone. Even if you have the same cancer, your mutations are yours. Your DNA is yours. I never knew that until I had cancer—how specific it all is, how two people with the same diagnosis can be on completely different roads. I thought cancer was one thing. It’s a thousand tiny differences, and the drugs only fit some of them.

So no, I didn’t get sick at first. I kept my hair. And I learned the hard way that the hardest parts aren’t always the ones they warn you about.

Hi

I am so sorry you are going through such a difficult time. I can imagine your stress, disappointment, anxiety and fear.

These resources might be helpful:
If you are interested: Belle Ruth NAPERSTEK MSW offers Free Guided Imagery for Stress on You Tube and other Guided Imagery available for about $10- $14.00
on Apple Store or Google/ Android on- line stores. I found the Stress Guided Imagery helpful for Surgery, Radiation Oncology etc.

RED DOOR ( for Cancer patients and Cancer Survivors- offers many FREE online Zoom - Yoga, Meditation, Zumba, Pilates, Support Group , and added programs . Simply Google their website and enter your log on etc. if you are interested.

The hospital MD should refer you to should hospital MSW, Psychologist and Psychiatry appointments to assist with stress or any possible depression. Insurance will cover these consultations or visits.

Have you considered a tele- medicine appointment with a • Texas MD Anderson — TN Breast Specialist? Insurance should cover added consultations and Texas MD Anderson Cancer Center may offer experimental drugs that you have not accessed yet.

My heart goes out to you for added support and hopefully new clinical trials and improved outcomes.

Kindly,

Susan

Well this is my experience. Sorry its not all pink and positive. Stage 4 triple negative age 36. I wish you the best, but be prepared just incase.

I didn’t get sick from chemo. Not the first three months, anyway. No vomiting in trash cans, no days curled around the toilet. My hair stayed, too—still brushing it out in the morning like nothing had changed. I remember thinking maybe I was lucky, maybe I’d be the exception. I know better now. Losing your hair isn’t just a side effect; it’s proof the drugs are hitting something. When it doesn’t fall out, when you don’t feel sick, you start to wonder if it’s working at all. And when the chemo fails, you understand that the quiet was a warning, not a blessing.

The worst sickness wasn’t from the drugs. It was the in-between: that stretch from the last infusion to the three-month scans. You walk out of the center feeling “fine,” and then you live in limbo. Every twinge becomes a question. Every night you lie there bargaining with your own body—please let it be shrinking, please let the numbers move. Nobody tells you that waiting makes you sicker than any infusion ever did.

You get attached to the nurses in ways people outside don’t understand. They’re the ones who find a vein when you’re dehydrated, who bring you your favorite blanket without you asking, who compliment you on your new wig or eyelashes and actually mean it. You confide in them because they’re there every week, steady. And then a scan comes back bad, or a treatment gets pulled, and you see it in their eyes first—that flicker of sadness they try to hide behind a quick “We’ll figure out the next step.” They’ve seen this movie before. They know what the pause means

I’ve had three treatments fail. You show up on infusion day—book in your bag, snacks, the chair you always sit in—and they tell you you can’t go back today. Not because you’re too sick, but because insurance hasn’t approved the new plan yet. You sit there, port accessed and ready, and then they have to flush it and send you home. That day, the day you don’t get treatment, makes you feel sicker than the drugs ever did. The helplessness settles in your chest and stays.

The whiplash of this journey is absolutely exhausting. After cycling through three different treatments, I finally had a scan that showed no progression—a brief, beautiful moment of relief. But that hope was brutally short-lived. The latest scans reveal the treatment failed shortly after that good report, and it has now spread to my chest and neck. To be met with failure after failure leaves me feeling heavy, devastated, and fighting to find my footing in the ruins of what I thought was a victory.

They don’t tell you how scary it is to watch the room change. The infusion center becomes a small, strange family—same faces week after week, same jokes about the bad coffee. And then someone’s chair is empty. Then another. Some of them were on the same drug as you. You feel guilty that yours is working, and guilty again when it stops. Survivor’s guilt in a recliner, hooked up to a pole.

Chemo doesn’t just work. Not for everyone. Even if you have the same cancer, your mutations are yours. Your DNA is yours. I never knew that until I had cancer—how specific it all is, how two people with the same diagnosis can be on completely different roads. I thought cancer was one thing. It’s a thousand tiny differences, and the drugs only fit some of them.

So no, I didn’t get sick at first. I kept my hair. And I learned the hard way that the hardest parts aren’t always the ones they warn you about.

@smith777- my pain level was tolerable and significantly reduced after the first couple days. I don't think i took the pain meds prescribed. But moving and sleeping comfortably lasted longer and I made myself a mastectomy pillow- and life saver for sleeping and riding in the car. I was dx at 68 and chose to go flat. When shaping is needed I wear my protheses, during the hot summer I wear my 'knitted knockers'. After treatment was over I didn't want any surgeries- so no reconstruction. For me best decision, I only wish I had been more clear with my surgeon on what my definition of flat was. But then maybe he went as flat as he could given my body shape at the time.

@shellyk89
So sorry for your experiences!! You are a warrior and don't let any one tell you different!!! Yes, the silences are good to listen too. But, they can also drive you crazy, been there done that!! Breast cancer is a journey for each individual that is going through it. No matter what kind and how severe. I have had breast cancer twice! 26 years apart!! In shock, unbelievable and just nuts. do your own research, this is a good forum to come too also. If you are well enough to go to a support group go,because you will find people that have had similiar experiences but those experiences can only be used as a guide. You have lived in your body, all this time. Listen to the silences it's telling you. BUT, the one thing you should remember always. YOU ARE NOT ALONE! They are walking in their shoes and your are walking in yours. All shoes but different sizes, widths and colors. God be with YOU! And if you listen you will hear him!!

@bpknitter53

Hi

It seems like you’ve been through a lot. I can imagine the treatments have been stressful.

I am considering bilateral mastectomy.

How was your Pain experience following the bilateral mastectomy?

How are the cosmetic results? Did your MD use nipple sparing or nerve sparing surgery methods?

I have had a lumpectomy and (Radiation Oncology therapeutic regimens.

My heart goes out to you.

Thank you for your follow up.

Best,
F.