Triple Negative Breast Cancer: What treatments are you having?

Thank you 😊

Sad to hear of your reocurrence and I pray that it will be treated and you will be back to good health again quickly
I worry every day about my triple neg coming back.
Where did it reoccur?
How did you discover it?
What treatment will you have?

The article that I posted above addresses the difference in the pattern of recurrence for triple negative compared to ER+ breast cancer.

"Many triple-negative breast cancers differ significantly from hormone-positive tumors in that they are less likely to recur late, that is, five or more years following diagnosis.

With estrogen-receptor-positive tumors, the incidence of recurrence remains steady for at least 20 years following the diagnosis, even for very small, early-stage tumors. In fact, people who have estrogen-receptor-positive early-stage breast cancer are more likely to have a recurrence after five years than in the first five years following diagnosis.

In women with hormone-positive tumors who are treated with hormonal therapy for five years after surgery and/or radiation/chemotherapy, the distant recurrence rate between year five and year 20 ranges from 14% for small, node-negative tumors (T1N0) to 47% for larger tumors that have spread to lymph nodes (T2N4-9).8

The lower incidence of late recurrence with triple-negative breast cancer wasn’t as clear until recently, as many studies only went out five years when looking at recurrence and survival.

A 2018 study, however, looked at people with triple-negative breast cancer who were disease-free five years after their diagnosis. Among this group, the 10-year recurrence-free rate was 97% and the 15-year recurrence-free rate was 95%."

What is the rate of reoccurrence in the first 5 years with Triple Negative? What imaging and monitoring is normally done during those 5 years?

I'm 2 years into my 5 years, baseline here at UCLA is an MRI with contrast every year, and a mammogram every year - staggered so you are getting one or the other every 6 months.

I had a PET CT scan at the end of active treatment, and have three months follow-ups with my oncologist for blood work tracking tumor markers.

My reoccurrence was found in my bilateral 6 month ultrasound (diagnostic mammogram didn’t find it) Same cancer and localized as the 1st time. Had a right auxiliary lymph node dissection. (5 lymph nodes removed) inconclusive- cancer Not in lymph nodes but in the tissue around one lymph node. I am In the middle of taking Gemzar/Carboplatin- 3 more treatments left. This regimen is worse than the Red Devil and Taxol. Spent 9 days in hospital due to dangerously low platelets and WBC counts. Had 3 blood transfusions and daily Zarxio injections.. and now my Gemzar/Carbo doses are 20% reduced. And then my port stopped working. Had to be removed & replaced , then both incisions became infected. Absolutely horrible. After chemo, I will have 25 rads with No boosts.

I so appreciate your reply to me especially while you are going through such a painful ordeal!
You are very brave to go through those treatments. You must be a fighter and it sounds like you will knock this cancer OUT!
Its been 7 months since mastectomy and I am afraid!

Thank you 🙏🏼🙏🏼

Some doctors don't monitor tumor markers. I'm glad to see that your's at UCLA does. My oncologist at Cleveland Clinic does as well though pointed out that inflammation in the body might cause a rise and be unrelated to any cancer development so not to be alarmed. But there are women who've posted on Mayo Connect that the only early warning signal was a rise in tumor markers...that likely saved their lives. I think that I'm inclined to think 'the more data, the better in general. All of us on these forums are in my prayers and best wishes.

The rate of reoccurrence in the first 5 years with TNBC will depend a lot on the details from the pathology report, from the mastectomy. The tool linked above (and again here: https://breast.predict.nhs.uk), from the UK's National Health Service will give you some idea if you put in all the data from your pathology and the treatment path you chose. (Reoccurrence rate is the difference between survival rate and the deaths from other causes rate, the dotted yellow line on the graph.)

We will all be living with uncertainty, though. Everyone does whether they realize it or not. For us, it is simply undeniable. And that can be hard to deal with, emotionally, for anyone.

My wish for anyone going thru this is that they can find a way to be ok with uncertainty. I had Hodgkin's at age 35 and wasn't equipped to handle the uncertainty then. It really tore me apart, for several years after completing treatment.

Just listened to the first part of a podcast where they were discussing uncertainty, more broadly, and how to come to terms with it through meditation. I've tried but never really felt ok doing meditation, but I got some insight from listening that I think will be helpful for coping with the next few years (assuming I make it thru a few more). Maybe you will find it helpful, too. Here's the link: https://www.nytimes.com/2022/01/25/opinion/ezra-klein-podcast-ruth-ozeki.html