Staying Positive with Stage IV Metastatic Breast Cancer: A 22-Year Survivor's Up...

Thank you for the update Ms. Drusilla🩷 Very encouraging 🌻

Amazing 22 years! Very encouraging. Im 32 with stage 4 TNBC and found your update encouraging

Thank you for the information. Can you share what lines of treatment you were on, before Enhertu? And for how long? Many thanks.

Of course... #1. (2002) I was 42 when I was first diagnosed with stage 1, and radiation was the first line of defense after the biopsy. The biopsy said it was benign, but they treated it just in case. This was at the first hospital I visited. I went to my appointments for 4 years there, and I continued to feel the same lump in the same breast. Turns out I had a lot of cysts in my breast. So, radiation and biopsy were the first line of defense. #2. (2007) I changed hospitals and was referred to an oncologist, and she immediately ordered a PET scan, and it was definitely cancer, same breast. After the biopsy, the surgeon suggested removal of my right breast, but I chose to have a double mastectomy with reconstruction. I was treated with chemo and tomoxafin. I continued my treatments and was told it was stage 2, but she wanted to be aggressive. Once I finished my treatments, I was cancer-free. #3. (2019) During the pandemic, I found another lump in my right armpit, which I was told was probably a hair bump or cysts. Turned out to be cancer after a biopsy. I was scheduled for radiation to shrink the tumor because the way they had to cut it out would have caused a skin graff. Once it was shrunk, I went to surgery, no skin graff, and the scar wasn't noticed at all. I was placed on Ibrance, a chemo pill, daily for 21 days on and 7 days off. I also had to have a shot in each hip to prevent the pill from destroying my body. I think the pill was called flasidex (sp). I was doing fine until February 2024 when I started losing weight. I was constipated and had diarrhea at the same time, but I wasn't eating any food for weeks. I was always feeling full. I complained and complained and was told it was irritable bowel syndrome (IBS). They ordered a PET scan, no cancer, CT scan, no cancer, another CT scan, no cancer. I wasn't pleased with the care I was getting. #4. June 2024) I was referred by a radiologist I'm very close to and she looked at my scans and knew it was cancer. She made a few calls and I was at another hospital, and yes, it was cancer that had spread to the lining around my abdomen. I was devastated. They immediately ordered an ultrasound biopsy and found the cancer. I was assigned an oncologist and she removed me from the Ibrance, shots, and ordered that I be drained because the IBS they thought I had was actually fluid leaking from the lining where they found the cancer. Thank God it was very small, and they fixed me. I am currently on Enhertu every 21 days by IV, a low dose. Yesterday I had all test done and I am doing great! I'm sorry ths is long, but I want everyone to know that if you are not comfortable with what you are being told about your health or treatment options, you should seek help else where. It's your body, know it. It's your life protect it. You are worth it!!🩷🩷

I had breast cancer 18 years ago and five years ago I was diagnosed with metastatic breast cancer in my bladder. I have tried multiple infusions and oral chemotherapy. I too have been on enhertu…. I have just had my 24th infusion. I am doing well with it. Very few side effects. Occasional fatigue and stomach issues. Attitude and positivity is everything. Hang in there ladies

Thank you for your response, Drusilla. I am on my 5th line of treatment and no actionable mutations.

Hi Drusilla H — thanks for update — read through your longer history and grateful for the details. Not least a reminder that I should get a bone density scan — oddly, for the excellent care that I am receiving, that has never come up… whereas a bone density scan was the first thing ordered when I first had a hormone-responsive cancer.

Hi I have MBC with Mets to my lungs and but my last Pet scan showed reduction in the breast tumor and some in the lungs now I have pain in my upper left back so I’m worried about bone I am on Kisquali and Fasodlex shots and doing ok. But now I’m worried

Hi. Thank you for your response. I, also just began enhertu. I have NBC with Mets to my lungs stage 4 second line of defense

Bless you ! Keep on keeping on ❤️

Great update, thanks!

Thanks for sharing. When I was diagnosed in 11/23 I didn’t think I’d still be here now. Thank God. This is encouraging but so far I haven’t seen anyone else on here with metastasis in their abdominal cavity. I always have to be different. Thank you everyone for sharing 😘

Hi, thanks for sharing. It’s so inspiring to hear about how you’ve overcome the hurdles thrown at you. I too have MBC stage 4, was diagnosed in late 2019 and went through surgery, chemo and radiation treatments in 2020. I was cancer free for two years and on tamoxifen. Cancer came back on my lymph node on my neck in 2023, it couldn’t be operated on due to its sensitive location. They gave me Verzenio to shrink it but it affected my kidneys and liver and I developed AFIB, so they switched me to Ibrance and Flaxodix injection. It shrunk the tumor to a small enough size for another set of radiation treatments that completely zapped it. I go through Pet/or CT Scans every 3 months for monitoring and a few months after the neck tumor was zapped, they found another cancer on my spine (T5). My onco team recommended radiation treatment again and it worked(my husband teases me that I glow in the dark for all the radiation treatments I’ve had). Due to how sneaky this cancer is, my oncologist put me on Enhertu, low dose every 3 weeks at first but it wipes me out so much (fatigue so bad I couldn’t get out of bed for days after chemo, nausea, vomiting, diarrhea), she extended the frequency to every 4 weeks and I get Iv fluids 5-6 days after chemo to replenish my body. So far, Enhertu hasn’t affected any major organs and my cbc results indicate improvement on my infection and immune system, still on the low end but manageable. 7-10 days after chemo, I feel good again and make up for it by eating and exercising a bit, doing my crafting(knitting, crochet, embroidery) to keep my hands and mind occupied, despite the neuropathy on my hands and feet that I started to get from my first dose of chemo 5 years ago. We loved traveling, we’ve been to more than 20 countries and been to most of the 50 states. Travel has been curtailed due to COVID at first and now the mets from cancer. Our last major one was in 2022 in the Banff/Lake Louise region of Alberta. It was amazing, but I’m just grateful that I feel almost normal in between treatments and hopeful that we can overcome it with the help of our proactive health care team( I do appreciate mine so much)! I’m making them cell phone cases from my crafting😊

Hi, I’m just wondering if the ladies whose mets occurred in the GI tract did you have lobular breast cancer? I’m came in my peritoneum and caused a lot fluid buildup which was drained regularly. After a few other treatments I’m now on pik and esr1 targeted drugs and doing well.

Hello, In June 2024, cancer spread to the lining around my abdomen, which caused fluid buildup. Because it wasn't caught in time, the lining started to leak, causing swelling, and I had to be drained on three separate occasions between June and August 2024. Once my new doctor found the problem, I had no more swelling. That's when they started Enhertu.

Caroline I have metastatic lobular breast cancer. My metastatic came in my peritoneal cavity. My appendix on my omentum, my sigmoid colon, one doctor wanted to operate and give me a colostomy bag way back in 12/23. I still don’t have it. Praise God! I’m on Ibrance and Fasledex and Xgevia. I had it on my ribs and my spine also.

Thank you for sharing..I was on a 21 day cycle but after round 3..I was retaining fluid and two trips to er for two days..my dr waited two weeks and I started weekly infusion

🙏🏻🙏🏻 that this helps you.

Thanks Lynnette, my fluid is under control now, thank God. I’m feeling good now and hoping the medication continues to work. It’s interesting that it comes back to to peritoneal cavity mainly for lobular bc

Thank you for sharing your story! You’re such an inspiration! 😁 I’m almost a 2 year survivor of MBC and planning to hit 22 years plus!!

Thank you for sharing this encouraging update and for being such an inspiring voice in the community. Your positive outlook after 22 years is truly remarkable and serves as a beacon of hope for others navigating similar journeys. The reminder to stay positive and keep living life fully resonates deeply, and many community members will find strength in your words and experience.