My 29 year old sister in law was diagnosed with TNBC about a week and a half ago. Her biopsy was sent off to Yale for further testing as it look abnormal even for TNBC. It came back as a matrix producing carcinoma. This subtype accounts for approximately .02% of all breast cancer with only 238 patients ever being diagnosed with it.
Fast spreading at about 1% per day, she already has several tumors on one breast, a single tumor on the other breast and one on a lymph node.
They are considering this to be stage 3 but she has further testing this week in the form of a pet scan and mri of her brain. If it’s migrated any further, it will be considered stage 4.
Unfortunately for the studies I’ve read on patients with MPC, none have achieved remission and 60% are dead in 4 years. I know my sister in law is not just a statistic but those numbers scare the crap out of me.
My brother is Navy and was retiring next month but just reenlisted in order to continue providing her with good health care. His current job at the sub school is also flexible and they are doing what they can to work with him.
So with all that said, does anyone personally or through friends or family have experience with TNBC or another very aggressive form of breast cancer?
Their plan is chemotherapy, surgery, chemotherapy and then radiation. However they cannot target the subtype as it has no estrogen or progesterone receptors so it doesn’t respond to any hormone therapy.
If you do have experience, have you went down to holistic or homeopathic route with any treatment? They are open to all options as treatment seems very bleak. Thank you.
oh wow. I have no answers to your questions but just wanted to tell you how sorry I am. Also you might want to cross post on the Riders with Health issues section in case anyone misses it here.
Another person with no answers, but jingling away.
I’m jingling as well. Huge to all.
I am so sorry. I have breast cancer, but it is er/pr+, her2-. I am in several Facebook cancer groups for my specific subtype (invasive lobular carcinoma) - you might search FB for a specific TNBC group. Reddit also has a breast cancer forum, and there may be some folks there who can point you to other groups. Thanks for helping do research for your sister-in-law. It’s overwhelming when you are first diagnosed, even with a much less aggressive cancer, but it helps to know there are people supporting you.
My cousin had the same diagnosis. She had a double mastectomy last summer. She is still going through chemo. It has most likely spread to her lungs, so another round is in her future. It was not easy. She is developmentally disabled so it was challenging to explain things to her. Luckily, she loves animals and watches vet shows. Comparing her diagnosis to one of the pets on the show made it click. It’s still so heartbreaking. It came up fast and spread like crazy.
Prayers for your friend and her family. I hate to be so honest, but it’s a tough diagnosis.
I have no experience w breast cancer. The only suggestion I have is to search NIH for clinical trials. And, I’m very, very sorry🙏.
this is a hard diagnosis and TNBC by its nature makes targeted chemo challenging. There are many drugs in clinical trial that target antigens like LIV1, PDL 1 and PTEN. There are also stratigies where the immune system can be called in to act as an agent. These choices are driven by further testing of the tumor tissue to find out the cell expressions.
Many of the more commonly heard of chemos for BC target hormone receptors that the TNBC do not have
The hardest part of this situation is the waiting. It was the worse part of my journey and my journey was a minor one.
I would suggest the family set up a communication page where news and updates can be posted and circulated so everyone has the same info at the same time. This lightens the burden of the family caregiver
I am so very sorry for your SIL’s diagnosis, and so young!
My one experience with it (my neighbor and good friend) isn’t positive. A protocol had finally been developed for her, but it came too tale
I had triple negative, stage 1b in my left breast and triple positive, stage 2b in my right breast, so I had two courses of treatment. I had a bilateral mastectomy (with reconstruction), four courses of chemo (can’t remember the name of it), and post-surgical anti-estrogen drugs to put me in menopause. I still take anastrozole to stave off the estrogen.
Jingles for your sister-in-law
This is a great idea. A friend used www.lotsahelpinghands.com. There’s a calendar for managing visits and chore help needed, as well as updates in a journal format and people can leave well wishes and comments.
So very sorry to hear of such a difficult diagnosis in such a young person. Hoping you and your family can find good treatment and support through this journey. It’s life changing for sure.
A co-worker had a very aggressive breast cancer 20+ years ago. I do not remember all the details but she did try several homeopathic options - acupuncture, magnet therapy. Although none were lifesaving, she experienced a lot of relief from the magnet therapy.
I will be jingling for a positive outcome. I am sorry your family is going through this.
I had a very aggressive form of Her 2 + breast cancer. I went from not feeling anything in my breast to feeling something baseball sized in a matter of 2 months.
Most places have a complementary care center available during chemo. Take advantage of it The acupuncture, reiki and massage helped me a lot.
I had chemotherapy followed by double mastectomy followed by radiation.
Chemotherapy is the worst thing that ever happened to me. I wound up in the hospital twice for low electrolytes…and once for a MRSA infection from my port.
I am in remission thanks to herceptin (it doesn’t work on TNBC). I wish you and your family the best of luck.
First, I am sorry that your sister-in-law received a TNBC diagnosis and am glad that you are there to support her and your brother. It was one year ago today that my TNBC diagnosis was confirmed. I am still in treatment; I am on the Keynote-522 protocol. It consists of neo-adjuvant chemotherapy/immunotherapy, then I had a significant lumpectomy, followed by radiation and I am currently on adjuvant chemotherapy/immunotherapy. Whatever protocol your sister-in-law chooses to pursue, please ensure she questions her medical team about side effects and anything else that she needs more information on. I have experienced significant and most likely life-long side effects that have tested me and my medical team. It is a challenging diagnosis, but being informed and asking a ton of questions has helped me and my family as I pursue this arduous trek that I refuse to call a journey.
Also, if your sister-in-law has any concerns or issues about members of her medical team, tell her to follow her gut. I did not mesh well with the first surgeon I was referred to: so much so that I told my husband, as we were leaving the first appointment, that he is not going to operate on me. Follow up conversations with that first surgeon cemented my initial reaction and I found a different surgeon that was awesome and blended well with the rest of the team; because of side-effects, surgery was high-risk and it was necessary for full collaboration with numerous members of the team to determine the correct surgery protocol to ensure success.
I have been a longtime COTH lurker and I have benefitted from the humor and distractions provided by COTH since I have been in treatment. For that, I thank all of you. I will be jingling frequently for your sister-in-law.