Triple negative - newly diagnosed and looking for your experiences

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. 🙏🏼🙏🏼

@tnbc26s1survivor It's scary, but I have three friends that were diagnosed with TNBC, had lumpectomy, TC chemo, radiation and all are still cancer free a few years later. None of them experienced any terrible symptoms during the treatment. I was diagnosed Feb 2023 with early-stage TNBC and went through the same process, and unfortunately, my cancer came back in 5 months. I then asked for Keynote 522 protocol, which is stronger and went through 8 months of 2 different combo of chemo's, immunotherapy and then mastectomy. The Adriamycin, which was the last chemo I did, seemed to finally shrink the tumor. The pathology from the mastectomy showed the TNBC was gone, but I now had ER+, so I am on AI Inhibitors for 5 years. I want to let you know that I am 74 now and to me, the chemo experience was really not as bad as I expected (never had any nausea, just some wicked tiredness after each Adriamycin infusion), and radiation was nothing. Chances are that your initial protocol will work so stay positive, eat well, drink fluids and electrolytes and keep moving!

@missycat
My care team was very aggressive with my care. I was diagnosed with tnbc August 2017, had a lumpectomy procedure in September and a port placement in the same month. Started chemo in October (red devil) regiment, then a different one afterwards I finished radiation treatment in April. I worked the entire time which kept me sane. I was a teacher at the time of my first cancer journey. My students kept me going. I couldn’t give up on them and they were determine not to give up me 😭. It is important to be positive about your journey. Cry, rest, learn healthy eating habits but also enjoy life. Your new normal will be whatever you choose it to be. 💕💕💕Take care

@rahrah6263
Oh and stay on top of your nausea meds. Ginger chew or ginger tea is helpful as well.

@tnbc26s1survivor
Hello tnbc26s1survivor,
Those of us who have had breast cancer really understand how overwhelming it all is after you are given a diagnosis. It’s all so scary and upsetting but I hope what I did during that waiting time may help you. I started thinking the path I was about to take was all part of my new “Journey to Wellness.”
Here is a little about my story: Right after I turned 70 in the fall of 2022 I had a Breast MRI and I found out that I had Invasive Lobular Cancer in my L breast which was Triple Negative and Invasive Ductal Cancer in my R breast which was ER +. The triple negative tumor was believed to be stage I or II and the Estrogen + tumor was believed to be stage I. Just about the same time I had 2 spinal compression fractures due to osteoporosis. I felt like a complete mess. We decided to go to Mayo Rochester for multiple reasons. I had to wait 3 weeks for my first Mayo appt and of course I was a nervous wreck during that waiting time. What really helped me was thinking that I was starting my “Journey to Wellness.” You have already started your personal “Journey to Wellness,” since your lumpectomy is behind you.
Due to the spinal compression fractures my Physical Therapist suggested that I lay on a board on a bed every single day for 15 minutes to help heal the fractures. I decided this was the perfect time to focus on my health and to tell myself that I would be well after the treatments that I was to experience. I called it my “Optimistic Self Talk” and I still do it almost every single day! Before I went to Mayo, during those 15 minutes I would first say a prayer, then tell myself that I would be well, that my surgery and any treatments would make me healthy and well. Things to that effect.
Once I was at Mayo they agreed with my decision to have a bilateral mastectomy. After the diagnosis I really had the feeling that a bilateral mastectomy was the right decision for me. However once I was examined at Mayo, they told me I had to return home for 5 weeks before I could have the surgery because I had a big hematoma in my L breast from the needle biopsy in my hometown. They had to wait for it to heal because it could have hidden something in pathology. So again I figured this was part of my Journey to Wellness and I continued praying and doing my Optimistic Self talk daily.
After I returned to Mayo and had the surgery I found out that both of my tumors were stage 1a and both were grade 2 with a low Ki 67. Plus a small DCIS tumor showed up in the pathology after my surgery that was not visible in any of my scans. So my feeling that I needed a bilateral mastectomy was a good one. They told me that the tumor of most concern was the ILC that was triple negative. They told me that most TNBC tumors respond well to chemo but they were not sure if I was to have chemo or not due to the tumor, the stage and my low Ki 67 score. So they took my case to the tumor board. They decided no chemo for me. They said Lobular cancers don’t respond as well to chemo and my low KI67 of 5% plus my age factored into the decision. I am on Tamoxifen for the ER+ tumor I had.
It has been 3 years since my surgery and I have been in remission since that surgery and working to stay that way! They told me in the Mayo Breast Cancer Survivor Clinic to stay well I should eat 7 to 9 fruits and vegetables a day, I should limit sugar, avoid or limit alcohol, and I should exercise to stay well. I am doing all of these things plus my Optimistic Self Talk daily! I truly feel it is helping me.
I wish you all the best tnbc26s1survivor! I like that you put survivor in your name! You are a survivor! Sending Love and Wellness wishes to you and to all on this site.

Thank you for your words of encouragement. It gives me some peace. I have a great oncologist, Dr Rivera, supposedly 1 of the best in the country and good support at home. Fear of the unknown sometimes takes its toll. But, I WILL be strong and stay positive. Thanks again

Yahoo Mail: Search, Organize, Conquer

You are so welcome @missycat
Also, keep a notebook or binder of your visits. Journal your thoughts, concerns, questions and share them with your care team. In the beginning I too had so many unanswered questions until I began to journal my thoughts, what if moments, how I felt before during and after my treatments. When I shared my concerns, I felt so much more at ease and began to embrace my new normal. I hope this helps you as well.
Take care

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.

i too am TNBC. Lumpectomy excision was 4.5 cm x 4 cm x 3 cm, returning a 19mm DCIS and a microinvasion. (1mm) stage upped from 0, grade 2 to 1A grade 2. Node negative... so it had not spread there. No genetic mutations for BRCA. Im 65. Met with a substitute radiology oncologist this morning... and I'm really mad..... He was " its just so small" and it felt like he really didnt think I needed radiation. My Medical Oncologist told me had they found this a few months later, we would be talking a different story and treatment.... Fortunately I don't need chemo. thankful for that... But dang.... I was so mad when I left there this morning... I need to vent. I see women all the time on support groups that are going for double mastectomies for less of a diagnosis. I hope when the regular radiologist returns and i can talk to him.. he has a little different bedside manner. 19mm = 3/4 of an inch... maybe that is small compared to other peoples, but dang... a freakin larger than golf ball size lumpectomy was taken out of my breast... If my surgeon hadnt take that large of amt to get clear margins, they may not have gotten it all. sorry to vent... Im thankful that it was not worse and they caught this early.. but really ... drop the C bomb, do all these tests, 2 surgeries etc... then to feel as though maybe i shouldnt even be seeking further treatment... I cant just get over this Dr visit at the moment.

Thanks for letting me vent... 🙂

@birdie60 - this discussion board has been one of my life savers. The venting and conversations are with others that understand my fears and frustrations. I've been in 'remission' since March 2023 - I'm TNBC BRCA2+ and was advised my greatest chance of recurrence is during the first 5 years - but that is no guarantee that it won't return after that time. No one besides someone that has this dx understands the hidden concern that periodically creeps from the back of your mind to the front. Or really understands the phrase 'there are no guarantees in life' - but we do. They don't understand the anxiety waiting to get appointments or waiting for lab or scan results. We have something that grew in our bodies that even after we've had surgery to remove the mass, there is always the possibility a microscope cell could have remained that may start to multiply and grow again. We have absolutely NO CONTROL over this.

I did everything 'treatment wise' that was available at the time (chemo, bilateral mastectomy, radiation, Lynparza) and I live everyday to the fullest that I can. I worry every time I need to go in for regular lab work or scans and just pray they are good and that nothing shows up. But then I have to remind myself - I've done what I could and I continue to try to maintain a healthy lifestyle and the rest is out of my hands. But I know that when I need to vent or talk to others that understand - I can always come here and speak with others who can relate.

Thank you for letting me add my two cents.