Struggling with Stage 4 Breast Cancer and Fear for My Children

Hi Angelica... sorry to hear... it is certainly tough. I am 50 now with recent metastatic diagnosis to similar areas as you mentioned. I was originally diagnosed with early stages breast cancer when I was 46. All I can say is be patient with yourself. Our moods fluctuate... there are days I can't stop crying and days I have laughs. Make sure your doctor does a biopsy of the metastatic areas. I had biopsy of my pleura (area around lung) and tumor biology was same Hormone Positive HER2 negative... I have started on Kisqali and letrozol.. depending on ur tumor biology they may change ur meds. All I know there are a lot of hopeful stories with people living longer than expected. Lots of new drugs... while the diagnosis of mets is not an easy one...I recently read this that helped me "you’re living now, and each moment you can spend making decisions for your care, prioritizing what’s important to you, and even acknowledging these difficult feelings is powerful. Even in the midst of this, there’s still life to be lived, and it’s okay to seek moments of joy, comfort, and peace when you can." 🩷🩷

Thank you 🙏

Hi Angelica, I am sorry you are afraid . There are so many options for treatment. It is scary, but if don’t stay calm you will make yourself crazy. The doctor should have a plan of action for you! Medications, radiation, chemo etc . Get a second opinion if possible, from a well known Breast cancer center . My story is very similar to yours, I am with my third oncology group as I wasn’t pleased with the results of the first two!once I went to a Breast cancer specialist Im finally comfortable with the steps they are taking! You need to be your own advocate, ask lots of questions! You can live a long productive life with MBC… try everything you can to make that happen’ best of luck

Angelica, just chiming in with the others here- there are several different protocols in oncologist toolboxes to help stabilize our conditions and increase survival rates. Ibrance/fluvestrant/xgeva failed me after 18months and then we switched things up to Lynparza/xgeva and having great results. My understanding is that if this cocktail fails, there are several other lines of treatment (like 8-10+) to try. Keep the faith, and get a second opinion to weigh your options as you have many. Hope today is better for you, tomorrow even better. :)

Hey Angelica, I’m so sorry you’re having to go through this. None of us should have to go through this! My first diagnosis was Stage 1 IDC in 2007. I had four rounds of chemo and 37 radiation treatments. I was seeing my wonderful oncologist every 6 mos. for bloodwork/tumor markers, and every single one of them always came back in the normal range. In Dec. 2022 I bent down to pick up my little 6 lb Pomeranian and felt a rib pop. We were on vacation, so went to the local ER for an X-ray, but it didn’t show anything broken. A month later (Jan ‘23), I reached behind me to get something, and felt (and heard) my shoulder pop. (THAT hurt!) We were back home, so went to the ER for an X-ray on my shoulder. Was sent to a shoulder specialist at one of the orthopedic centers, and was told I had a broken coracoid process. I had NO idea what that even was. The doctor was discussing surgery, but when he found out I had an upcoming appt with my oncologist, he wanted me to mention it to him, and he was going to call him as well. Cancer NEVER crossed my mind. I’d been cancer free for 17 yrs! Why would cancer be back?? I had a PET Scan the following day, and my oncologist (the same doctor I’ve had since 2007) called with the results later that day - Stage 4 metastatic breast cancer to the bones. Seven spots lit up on the scan: one rib on my right side (and it was also broken), my right shoulder (where the Coracoid Process was broken), C2, T11, left iliac crest (hip bone), and two lymph nodes in my chest. My oncologist here wanted me to go to MD Anderson for a second opinion. Not because he didn’t know how to treat it, but because he thought I deserved to have the opportunity to a second opinion. He told me what his treatment plan would be, but wanted me to hear what MDA had to say. My visit with an oncologist at MDA turned out great! I had another PET Scan there, and without knowing what my Memphis oncologist said his protocol would be, my oncologist at MD Anderson recommended the exact protocol as my home oncologist! Kisqali 600 mg and Letrozole, along with a monthly Xgeva injection for bone strengthening. Fortunately I’m only experiencing a few of the side effects, but even better - every scan (every 3-4 months) I’ve had since that first one, has consistently shown shrinkage in every lesion. With every scan it’s also had at least one lesion not even lighting up at all! I’ve gone from 7 active lesions to 2 active lesions in less than 2 yrs. My next scan is on Feb.3, and my MDA oncologist said my oncologist here in Memphis can “take over” until something changes in a scan, then I’ll have to go back to him at MDA. He said “when things change”, and I corrected him by saying, “IF things change!” Lol! I’m sorry this is so long, and it’s A LOT of information, but I just want you to know that although doctors may say there’s no cure for Stage 4 MBC, it CAN be contained for years and years! I’ve got a good friends who’s going on 20 plus yrs living with ER/PR+HER2- MBC (same as mine), and she’s doing great! That is what I’m praying for too! My oncologist said to me, on the day he told me I was Stage 4, “This is not hopeless. Do you hear what I’m saying? THIS is NOT hopeless!” He’s literally the best doctor I’ve ever had! I will say that I do get “Scanxiety” starting about a month prior to each scan, so right now that’s what I’m dealing with, and there’s also many days when I’m sad/cry, and I have to make myself get in the shower and get out of the house. Remember this is NOT hopeless! I’m going to be praying fervently for you!!💗

In response to Leigh B's response to your question, I, too, was diagnosed with early stage breast cancer (stage 2), 14 years ago, and I, too, was diagnosed with a metastatic recurrence of breast cancer in my lung and spine. I will be getting my staging tomorrow from a pulmonologist who specializes in lung cancer. About 3 and a half months ago, I started coughing and didn't really think much of it. I just thought that it was my asthma acting up. I saw my primary care physician, and she did a urinalysis on me to check for signs of maybe walking pneumonia or something else. She treated me for what was assumed to be a severe case of bronchitis, but as I noticed that the coughing and chest pain wasn't going away after the medication was gone, I chose to see my oncologist. Over the past week or two, I've gone through a CT scan, a PET scan, a brain scan, and a Thoracentesis to get rid of some fluid in my lung. I can relate to the fear that is felt, but as we can attest, going through early stage breast cancer treatment isn't too bad. Everyone responds to treatment differently, and depending on how you usually get through different medications, you will do fine.

I so agree with the ladies urging a second opinion at a major cancer center. They work very quickly and will give you more than just a review and validation of your current treatment. They exist to help you explore and learn about all possible treatments. Don't leave that stone unturned. Good luck - 🙏

Your journey sounds very similar to mine but please try not to be discouraged I know going to the Dr n hearing all this bad news is daunting n very difficult to hear. I was diagnosed in 2008 w stage 4 mestatic BC it had spread to my spine I have been on letrozole since 2009 in 2021 it came back I had bone pain like you I ended up hitting my head under the couch and had a huge lump on my head that would not heal they put me on Verzinio for 2 yrs I ended up not being able to tolerate it made me so sick. I have it in many places as well chest, forehead 2 places on my spine arm and clavicle rib but as depressing as it is I still feel lucky 😅 and fortunate God has allowed me to still be here. I sure don't do the things I used but all n all I feel pretty good and through God's grace I will live to be a ripe old age and enjoy every moment with the ones I love. I wish you the best they are making great strides on breast Cancer 🎀 I wish you a long and wonderful life. ❤️

My dear Angie- I feel as though I’m reading almost the same story as my own! I too am 37 and a mom of 3 (11,14,17) and was diagnosed in august of 2024 with stage 4 METS! I know exactly how you are feeling and reading this made me cry a little tonight to hear someone who is the same age as myself feeling the exact same way! I was told no surgery, chemo or radiation as mine is located in both breast, both lungs, rt lymph nodes of the armpit, sternum, spine, pelvis and femurs oh and shoulders!! I started in Sept with lupron shots every 3 months, Xgeva every month, we tried 600mg of kisqali only to find out after 2 months allergic to it, letrozole and venlafaxine every day.. being can’t be on the Kisqali they put me on Verzenio an have been on it for almost 2 weeks now! Your prognosis is the same as mine and feel the same some days! Some days as you know will frustrate you other days will be good the one thing I’m learning in all this is to enjoy the goods ones for as long as possible and on those bad days remember the good ones an let that be your driving point to keep going! Let them babies be what keep you fighting as mine are surly helping as best they can!!! If you ever need a shoulder don’t hesitate to reach out!! We are all in this together and are family!

Everyday they are finding new break thru for treatment I was diagnosed in 2023 with stage 4 metastatic breast cancer. I’m slower but with help things get done. Please think positive. I pray and keep positive. God has this and. With your positive thinking you’ll get thru this time. Your in my prayers

Awe I'm so sorry for how you are feeling 😞. Dr's they don't know everything. I have pretty much the same thing you do however I was diagnosed w Stage 4 in the beginning from the get go. I went 14 years without it coming back when it did it was all over . Don't lose hope a positive mindset is essential for survival and who knows someday they could find a cure for just what we have. Don't let it win . I am in the 17th year of my journey and it was an absolute horrible diagnosis in the beginning. Live your life love your children and don't take one thing for granted. Be thankful for one more day. 🙏 I know I am. Be your new 👌 best.

I love reading everyone's stories and encouraging comments. I too have triple negative MBC. I was first diagnosed in 2021 w/stage three. I had a double mastectomy, did chemo and radiation. In January 2024 I started seeing small bumps on my left breast. I went to my regular doctor who diagnosis me with shingles. After the bumps(which I now know are nodules) didn't go away after taking all the medication, I made an appointment w/ my Onocologist. After having a biopsy I was diagnosed w/stage 4 MBC. I’m now on Tredelv after my first regimen stop working. My tumor markers started decreasing after my first round. I go for my scans next week and my mind is all over the place. Reading these post made me feel so much better. No matter what the scans say, GOD is my protection. Thanks Ladies for Sharing.🙏🙏🙏🙏

Welcome to this supportive community where many members understand the overwhelming emotions that come with a metastatic diagnosis, especially when parenting teenagers through such uncertainty. Waiting for scan results and oncologist appointments can feel incredibly isolating, but connecting with others who've walked similar paths often provides comfort and practical wisdom. Many here have found strength in focusing on creating meaningful moments with their children while also taking care of their own emotional needs during treatment.