Triple Negative Breast Cancer: What treatments are you having?

I am not triple negative, but I do know a bit about it. This is just a hard thing to suddenly feel things changing under our feet. Can you explain a little more about your journey. When you say you have had estrogen positive for 21 years, have you had active breast cancer for 21 years or did you have that cancer 21 years ago treated successfully and now you have another diagnosis? Do you have staging for this triple negative? Has your doctor recommended treatment yet?

Greetings @thielmann1. I’m sorry to hear about your diagnosis. I was diagnosed with triple negative breast cancer last February. I had a DCIS (Stage 0) and an invasive (Stage 1A). The not-so-good news about triple negative is that it is usually more aggressive/faster growing and usually does not respond to hormone-related therapies. While my cancers were caught early, they were also grade 3, and I had a very high Ki-67. These are both more aggressive indicators as well. For me, it just meant I didn’t want to delay moving forward with treatment.
The good news is there is no reason for me to have aromatase inhibitors post treatment, which is nice to be able to avoid those side effects.

Due to the aggressive nature of my tumors, and especially the invasive, Mayo Clinic had me in chemotherapy within two days. Thus, by the time I had surgery, there were no active cancer cells in my breast tissue or lymph nodes. I had never heard of having the chemotherapy first before surgery, but this seemed like a great approach to me. Something to consider with your medical team, if appropriate.

FYI. Other factors played into my surgical decision - unrelated to being triple negative and more related to avoiding future cancers. I have a strong family history of breast cancer. I’m 64 years old. I had a previous atypical lobular hyperplasia (ALH), a future cancer marker. While I didn’t test positive for the BRCA gene, I do have another potential genetic marker (STK-11). I also preferred to avoid radiation. Thus, I opted to have a double mastectomy with reconstruction. I am halfway through my reconstruction, and am at peace with all my decisions. They found several other small DCIS and ALH In the breast tissue they removed. I would likely have been back with another cancer had I gone with a lumpectomy, So this was the right decision for me. Everyone is different. And your decision will be the right decision for you.

So again, to me triple negative means don’t delay, and it also means hormone related therapies are not effective/necessary. Forge ahead with your medical providers. Prayers you find the best treatment for your situation. Blessings to you on this journey so many of us travel.

I was diagnosed with triple negative grade 3 invasive carcinoma last December. I couldn’t get chemo because I couldn’t get an eight and I am in a wheelchair because with Covid nobody wanted to work so I got radiation I finished radiation the end of September I have horrific fatigue I have no feeling around the breast near the surgery site and read they did the radiation and now I have to go for another ultrasound is this fatigue, after so many months of radiation

Thank you for your reply as I am having a hard time with this new and different diagnosis. I don't have answers to some of your questions as this is still undergoing some testing. I was diagnosed with lobular carcinoma in 1998, followed by a left breast mastectomy and 6 months of CMF chemotherapy. In 2000, I had a local re-occurrence under my left armpit, which was attached to my skin. After surgery, I had 6 weeks of radiation to my left chest wall. I took Arimidex from 2000 to 2013, at which time I had to switch to a new oncologist, who took me off of the Arimidex as he felt that it was probably not needed anymore, nor was it effective any longer. ((my previous oncologist said that he would keep me on it for life.) In 2017, another lump appeared under left armpit, which was more lobular BC. It was removed with clean margins. In 2019, I underwent a R breast mastectomy as the lobular cancer had now shown up in that breast. I was put on Tamoxifen, and in 2020, 2 more lumps showed up under armpit on left side. I had a surgery that required a left dorsal flap to close the wound. After a long period of healing the wound from that surgery, I had 6 weeks of radiation on my left chest wall. The side affects of that have been very uncomfortable as my whole chest wall is bound very tight making harder for me to expand tissue and the right lung. I was put on Abemaciclib and Falsodex for treatment (extremely expensive medication!!) in June 2021; meanwhile I have 4 more small pink dots on my lower right chest wall. 2 were biopsied and show more lobular breast cancer. One of them grew to a small sized pea, which was removed and biopsied. That has come back as Triple Negative breast cancer, different from all of my past ER positive breast cancers. That was a lengthy answer to your question about my history. It is long and thank you for reading all of this. Although this is past history, I ask myself if I had not been taken off the Arimidex in 2014, would any of this occurred, as I was symptom free for 14 years. FYI, my oncologists are at Stanford in Palo Alto, California.

Thank you so much for responding and relating to me your story. We are in the middle of deciding further treatment. It was helpful to hear how the Mayo clinic handled this.

Thank you for responding to my message. It is comforting to hear that there are others who understand my diagnosis and can share their treatment. I will keep you posted on further action, and do hope that your fatigue lifts in time. Fatigue is a definite side effect of radiation, and we all experience it differently. I finished radiation to my left chest wall in July and am pretty much feeling normal again. I was definitely fatigued throughout the summer. In 1998, I also had radiation and remember fatigue for nearly 6 months.

You have had a long road of treatment, and you are definitely resilient to go through all of that. It sounds like you have had an ongoing problem since you went off of anastrazole. I know that typically 14 years would be beyond the time they would have you take it, but if this were me, I would be asking the same questions about that. There is a huge body of knowledge about BC, but I am in the school of thought that there is vastly more we don’t know. Both of the drugs you mentioned are labeled for treating hormone receptor positive BC, so maybe your doctor feels the same way. Have you discussed this with your doctor? There is a ton of new research and a few new drugs either in the pipeline or approved for triple negative, so there is hope. How are you feeling now about your medical team?

Thank you for your reply. Has anyone experience a lot of swelling along with the fatigue? I fell like Iam cartingA gallon of water on my left side where I had surgery on my left breast for triple negative invasive carcinoma I also have a little cough from radiation is this all radiation related but is anyone else experiencing the swelling like I am I had an ultrasound they said that there was no cancer visible so I don’t know what to think but apparently the radiation did a lot of damage

Radiation causes a lot of thankfully temporary inflammation. It can in some cases cause other issues in the distant future. The fatigue and the swelling should subside, but I remember how it was at the time. I felt like I was slogging through water, every step exhausting. Please allow yourself to rest.

I have a new puppy,I’ve alone with no help. The swelling really bothers me and is VI p in G it. I feel like they damaged all my lymph nodes, are not clearing my Bodyof toxins. I am a very high energy person but the fatigue is really Debilitating I had third-degree burns with the radiation had a stop for a week and then they consistently I continue for one more week which I think did a lot of damage.