I guess I’m writing this message to redirect my anxiety for a little while. My mom was diagnosed in January 2022 with Triple-Negative breast cancer in her left breast. She had a mastectomy in March followed by four rounds of chemo (which she tolerated exceptionally well). The disease was Stage One with no lymph node involvement. While she had her breast, her CEA levels were normal and after surgery, they began to climb and hover in the 5.6 range (doctor told us that this might be her new normal). A PET scan in August of 2022 showed no evidence of disease. Fast forward to January of this year and at her annual check-up, her CEA was 7.1. Of course I freaked out and demanded more testing. A PET scan revealed a 2.0 × 1.9 lung nodule, and after a biopsy, the results came back that it was TNBC in nature. I am inconsolable. How can someone with stage one and no lymph involvement have mets? Also, i took her to a primary care doctor yesterday and asked them to see what her CEA level was. The result came in today and it was 6.2, nearly a point drop after a month. Her other bloodwork - inflammatory markers, cbc, cmp - all are normal. She had parents who both lived over 90 (my mom is 69). I lost my father at 58 to gastric carcinoma; I can’t lose my mom. How can this happen all over again? I am simply heartbroken and devastated.
Sorry to hear this. I was diagnosed tnbc Oct 21 going through 6 rounds chemo and radiotherapy in 22. I didn’t have node involvement, they would only gave me a lumpectomy. My tumour was 12mm which they classed as small. I hope you get some answers soon.
Thank you kindly for reaching out. I pray all will always go well for you. 
I’m so sorry @doc. Unfortunately at any time microscopic cancer cells can break away from the tumour and travel via the bloodstream as well as via the lymphatic system and remain dormant for an unspecified length of time. I believe that as TNBC is more aggressive than the endocrine fed tumours (which I had), evidence of spread tends to be found in the first five years after diagnosis. I can empathise with your feelings of frustration and devastation over your mother’s situation as my own mother died from an incurable disease (not cancer) and it is unbearable at times. I am hoping that others with more experience of treatments for MTNBC will be along to give you some hope and advice. Please look after yourself too as that will be the best way to support your mother. Are you in the UK or the US? You may want to post in this category Living with secondary breast cancer - Breast Cancer Now forum which will give you more access to those with specific advice.
As Tigress said, they now believe that before breast tumors can be detected by touch or even by scan, that many of them release cells into the blood stream. The more aggressive the tumor, the more likely this is to have happened and TNBC is known for doing just that. That’s why no matter what stage they do chemo for it hoping that it wipes out any rogue cells. I’m so sorry it didn’t do the trick with your mother. I will also say that we all get your grief and this is certainly horrible although I would like to add that they have treatments for it. Hopefully your mother will respond to them for years and years to come. But one thing I will add is that for your own mother’s sake, because her fear and concern for you is overwhelming, try your best to control your grief in her presence. She cannot fight this disease like she needs to if she is overly worried about you. Therapy might help or even just letting your friends know so that they can support you as you support her. The patient is the center of a circle. All of her emotions can go out, but those around her need to try to make their emotions go out, too. Not down to her. Hugs sent your way…
Unfortunately cancer can travel via the blood as well as the lymph system. I had a small 18mm grade 3 TNBC lump found by mammogram in Jan 22. No lymph node involvement but vascular invasion at the tumour site. I had a lumpectomy followed by chemo. Part way through chemo I got an infection and had a CT scan to confirm diverticulitis. A liver met was an accidental finding. I went on to have immunotherapy (my tumours are PD-L1 positive) and have been in remission for a year. So there is hope even with metastatic TNBC. Wishing you and your mom all the best.
Thank you kindly for your advice and concern. We are in the US. I’m so sorry about your mother. Our mothers are so precious and to think I could possibly lose her wrecks me. One step at a time, I guess.
Even though we are strangers, you speak to me as if we’ve been lifelong friends. Thank you for your concern and advice. All of March I have been avoiding telling her some things as not to upset her, tried to have a stiff upper lip, as they say. Keeping it inside has resulted in bodily pains i have never experienced before. I need to have some sort of outlet but as of now, i cant think of anything but her. We see the oncologist on Monday. Please send a prayer or two our way.
Thank you for your kind wishes and for the hope. It’s a disease i wouldn’t wish on my worst enemy. I pray yours stays in remission and you have decades and decades ahead of you.
The stress of this is awful I know. I lost my mother to cancer 11 years ago and not a day goes by where she isn’t on my mind. Therapy helped me quite a bit along with the love and support of some close friends. If you have any questions after you speak with an oncologist we’ll be glad to help. I hope they can relieve your mind a little bit.
Hello
I am sorry you are going through this.
Reading that you are keeping your feelings inside concerns me - I have learned the hard way that this is not healthy for us and in fact, as you point out, can cause us physical problems as well as mental ones. So I urge you to get some help with this by finding a counsellor, preferably one with cancer support experience, who you can talk to about your feelings and fears. This will help you be as strong as you can and give you strength while you support your mum. Ask your mum’s treatment team if there is any counselling for you or if they can point you to where you can get some. And ask a friend if they would be your go to person for comfort and solace.
I am sending you a big hug from the UK.
Xx
Hi Doc,
I’m here in Florida, moved in 2023 from Georgia, I was diagnosed with stage 1 invasive breast cancer in 2021, it was triple positive, the first oncologist told me if I didn’t have chemotherapy radiation and Herceptin + hormone therapy I would be dead in two years, I’m still here, no chemo, no Herceptin, only radiation, they don’t know everything, I have a friend who had triple negative 21 years ago and is still alive, and many others with different kinds and still here, it’s not like it used to be, have faith, and stop all the testing, that can be wrong and only cause stress.
Much love
Trish
That’s reassuring to hear. I had ER+, her2 +++ and was not given the option of chemo and herceptin (I’m in the uk, so could be different). It was only grade 1 too, so that was why. I’ve since stopped the tamoxifen due to side-effects, and did consider also that if there were any stray cells left, they could just grow via the her2 receptors, which haven’t been treated. Glad to see you are still doing well despite not chucking everything possible at it.
I wouldn’t recommend stopping testing, however. Without testing Doc’s mother would not have known about jumping to a stage 4. I hope she can now get the appropriate treatment, and it gives her many more years, if not complete remission.
Thank you!
, Just to clear up, the tumor was 6mm which was gone before surgery with the biopsy, what they found was DCIS, so according to the second oncologist no treatment at 5mm, and considering my age why would you with just 1mm over, he also said there was no benefit at 77 and the cut off is 80, I have high blood pressure, I’m sure that was a factor, as Herceptin is well known for causing heart failure, I did see a cardiologist before I saw oncologist, and he said they take you off and treat it then put you back on, I was happy I didn’t have to have it.
As far as chemo I definitely would not do that, I’m 5’1” it would destroy me, TG it never came up.
I would just like to say, this cancer is not one size fits all, it must be done on individual basis , my surgeon said there are no two alike, we’re all different.
All the best,
Trish
Thank you so much for the kind advice and hug - I sure needed it.
Thank you for your candor and for the hope. I want my mom to be a TNBC success story. As of now she feels great (except for insomnia if anyone has any suggestions; I’ve thrown everything but the kitchen sink at the problem).
My blood went cold when I saw you mention it as Stage 4 (though of course it isn’t your fault). Is it still considered Stage 4 when she was Stage 1 with no lymph involvement? I thought this would be staged differently. It was her left breast and now it is in her left lung, practically just “walked over” and decided to set up house.
My husband and I use Valerian root for sleep, it’s been working for 20 + years.
Sleep is very important to her health.
Good luck,
Trish
This is from Cancer Research UK. “Stage 4 means the cancer has spread from where it started to another body organ. For example to the liver or lung. This is also called secondary or metastatic cancer.”
Please try not to get hung up on stages. The key issue will be whether it is treatable.