bone mets

seq24

I have not been here for several years. I was diagnosed in 2016 with stage 2A ER+ PR- Her2-, one positive lymph node. I had lumpectomy, chemo, radiation and just started my 10th year on anastrozole. Today I had my annual breast MRI and got a call from my oncologist shortly after. I have a highly suspicious 4 cm lesion in my sternum. She's ordered a foundation one blood test (also called liquid biopsy), a CT scan and a nuclear bone scan. She seemed fairly certain that the cancer was back and is only doing tests to confirm. I might want to add that 3 days ago, I had my biannual blood work including tumor markers done. ( CA 19.9, carcinoembryonic antigen-roche, and carcinoembryonic antigen-ortho). All results were normal and in the same range they have been for the last 9 years. I don't understand why, with these levels all being normal, I'm being told I've likely got bone mets. 3 different tests would have picked up something, I'd think. I have no idea if there is treatment for this, if it is considered curable, or anything else about it. Hoping to hear from others who have experience with this. I'm terrified (more than the first diagnosis) and I feel like I've just been handed a death sentence. Thank you.

irishlove

@seq24 I am so sorry to find you facing a possible mets diagnosis. The folks here on the forum (as I'm sure you know) will be by your side to help answer questions and support you. I think the mind just throws you into a panic mode. I know I felt the same at first, but after therapy and 3 years of diagnosis, it's no longer the first thing on my mind in the morning. Also, if there is one area of cancer, it's quite possible that you can be treated with a curative intent. Sounds like your MO is already on the ball. Yes there are treatments for this, as it's treated as breast cancer in the bones.

I will say prayers for you (if accepted) and perhaps others will see this post in the morning and join in to support you.

Irishlove

seq24

Thank you for your support and prayers. I'm feeling pretty alone right now . I've been crying all day.

l8blmr

@seq24 I am sorry for you being told you have a bone mets possibility, but at this point it is still a possibility. Call me a skeptic, but I'm not a fan of medical oncologists that suggest it's cancer when test results have not confirmed a diagnosis, especially when your tumor marker tests were in the normal range, consistent with your history. Additional testing will be helpful. Don't be afraid to get a second opinion-nothing wrong with another set of eyes on test results that will determine your future. Like irishlove, I'm sending prayers and big hugs.

moderators

@seq24, hi! 👋 We’re really sorry you’re going through this, but we're glad you reached out.

It’s good that your team is moving quickly with more tests so you can get clearer answers. If it helps, many members here have shared that tumor markers don’t always reflect what’s happening, so imaging and follow-up tests are often needed to get the full picture. We hope others with similar experiences will continue to chime in and share what they’ve learned.

Also, if you’re feeling alone right now, we do have virtual support groups where you can connect in real time with others who understand what this moment feels like. You’re very welcome to join: Virtual Support Groups
Again, we’re really glad you reached out, and we are here with you.

Warmly,

The Mods

tougholdcrow

@seq24 I'm 2 1/2 years from a de novo metastatic breast cancer diagnosis with bone mets in my spine and hip. I'm still going strong and have lots of hope. My treatment has been working really well, and when it fails, there are more treatments available. At first I was completely overwhelmed and in a panic as more and more bad news came my way. I was shell shocked. But now I am living this precious life. You will find out whether your cancer has metastasized and then you will want to know what kind it is and then your MO will prescribe a treatment that targets that version. And if at any point you have any questions at all, you should seek a second opinion at a major cancer center. There is a great community here and elsewhere to help you through it.

seq24

Thank you everyone for your kind words of support. One more thing to add is that at the end of November, I had the Signatera test, which looks for any circulating cancer cells. The result was negative. So that, along with normal tumor marker tests and other blood work too, really has me wondering if this could be a false positive MRI result. Does anyone know the likelihood of false positives in MRI imaging? In the meantime I'm a stressed out bucket of tears who got absolutely no sleep last night. This is more stressful than my original diagnosis. That was very cut and dry and I've been fine in the almost 10 years since diagnosis.

obsolete

So very sorry you find yourself in this situation. This can lead to more follow-up testing and procedures, further increasing our anxiety and rising national healthcare costs. Sending warm thoughts 💚💜

"For every 1000 women with dense breasts screened with MRI, 2.5 will find a cancer in between mammograms, but 80 will have a false positive result. Because of their high false positive rates and lack of proven benefit, MRIs for average-risk women are not recommended by specialty societies."

https://lowninstitute.org/a-big-downside-of-mri-for-breast-cancer-screening-more-cascade-events/

dianakimling

How are you doing now?

greatly blessed

I had scans and they found several other mets on my bones and 2 spots in my liver. Needless to say, I am terrified. I'm taking Fulvestant injections. I had to stop the Ibrance. Do any of you have anything that you can tell me?

tougholdcrow

@greatly blessed I am really sorry to hear about the progression after such a long run on ibrance and fulvestrant. I am no expert on any of this, but I think you have lots of treatment options ahead. Have they done a biopsy to see if the cancer has changed?

shanagirl

@seq24 I’m sorry that you have found yourself with many questions and concern about traveling tumor cells in you bloodwork. Trust your oncologist.My story is similar to yours. Following my original Stage IIIA diagnosis with a 5.2 cm tumor, 2 positive lymph nodes after Sentinal node dissection and 18 node dissection, left mastectomy, reconstruction , Chemo, and radiation. I was under surveillance every 6 moths labs and occasional scans for 13* years. Then I got the call from my oncologist one evening in 2023 in January telling me my labs showed traveling tumor cells an my CA 27/29 had spiked from normal normally 25 all hose years to 84.. He wanted to see if those traveling cell were progressing to any organs in my body by getting me in the following week for NM Bone scan, CT/PET MRI whole body, as well as liquid biopsies on the cells. The result of this was Bone Mets to my thoracic & lumbar spine, sacrum and tailbone, hips l&R,several ribs front & back, sternum and clavicle areas.. He put me on Daily Chemo pills, and also monthly Injections of Fasoldex and Xgeva. As treatment protocol his combination of Verzenio twice daily chemo pills and the once monthly Fasoldex hormone disrupter, and Xgeva a monoclonal antibody, brought down my Cancer Antigen 27/29 down in the next 3 months from 84 to 67 to 56 to low 30’s and back into steady 20’s. I have been stable no progression since treatment and regular scans done since January 2023.. I love my oncologist and has been consistently on top of this cancer and kept me alive since 2009. And since 2017 new treatments like what I am on have allowed me to remain stable to continue enjoying my family abd live my life as best as I can with Stage !V metastatic cancer in the bone. Take heart @seq24. Everyone here is all supportive & encouraging. You will find your way with your oncologist and your recent diagnosis.🩵

greatly blessed

Tougholdcrow, thank you for responding. It's very tough.

greatly blessed

Tougholdcrow, yes, they did the Guardian test. The MRI on my liver today showed up 2 lesions and more places on my bones

tougholdcrow

@greatly blessed Keep us posted on what your MO says will be the next line. I think since you got such a long run on Ibrance, your next line of treatment can also last for some time since everything is hopefully moving quite slowly. Has your cancer changed, assuming it was originally HR+ Her2-?

greatly blessed

Tougholdcrow, we're waiting for the results of the Guardian.

It's tough. We're still trying to process this news.