Has anyone experienced breast cancer recurrence after many years?

I don’t know if you calculate 7 1/2 years long term but that was mine. Dx stage 2-3 in 2010, then stage IV in 2018. June 2018, Mets to bones, sternum, iliac crest (hip bone), pelvis, 3 or 4 ribs. Now in Jan 2025 Mets to bones (a lot more than initially though), lungs and now ascites (fluid in pleural area (pleurisy), I found this out just last week ☹️ therefore shortening my life expectancy once again. I have lived almost 7 years with mbc and don’t expect to live longer than 6 months now as my health has taken a dramatic decline since Xmas. 2 short hospital stays confirmed life expectancy to be less than 6 months 😢. But I have lived a life that I wanted since dx with mbc. Not so many trips or long vacations but spent lots of time with my family and friends ☺️. You can also live a happy and long life with mbc ! Just make sure you make the most of it with your family and friends! Enjoy life 💐🙏❤️

Yes. I had two lumpectomies, chemo and radiation over 20 years ago. Found out in September that I had an elevated tumor marker. That was a kick in the teeth!! The PET scan showed the cancer on my spine, pelvis and ribs. So now I’m on Kiscali and Femara for the rest of my life. I’m tolerating the meds very well, and am basically living life the same as I was. I’m 73. 😊

Virginia, I’m so sorry to hear of your recurrence. I was “cancer-free” for 17 yrs. after being diagnosed with Stage 1 ER+PR+ HER2-, then in June 2023 I was diagnosed with the same type cancer, but Stage 4 with metastatic to the bones: one rib, Coracoid Process (shoulder), C2, T11, left iliac curve, 2 chest lymph nodes. Hearing my oncologist say the words “Stage 4” was no doubt the most shocking news I ever expected to hear. I’m still trying to understand the how, why, when, and most likely will never find the answers this side of Heaven. Once I get there, it’s not going to matter anymore!! During those 17 yrs I was having bloodwork and seeing my oncologist EVERY 6 mos, and my bloodwork was always within the norm. Tumor markers were never elevated. I do understand you questioning how did this happen after being cancer free for so many years. I just wish I knew the answer. I have to believe if I had had a PET scan 10 yrs from original diagnosis if it would have picked up some of the areas in my bones? What about a 5 yr scan? Maybe it would have been Stage 2 or 3 with better treatment options. I think a CT/PET scan should be recommended to every cancer patient, who’s been told “no evidence of disease” after so many years from first diagnosis, to be part of the follow-up plan like the bloodwork is. Do you know what I’m saying? I may have confused everyone! lol! One of the worst times for me is about a month leading up to my next scan, which will be on Feb. 3. I just about shut down trying to deal with all the emotions that are all over the place! All I can do is cling to God’s promises! One of which is: “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 I’d love to know how you handle the time prior to a scan!

So sorry you are having to deal with this. Like you I had breast cancer 22 years ago and a mastectomy, standard chemo (cytoxan, adriamycin, and taxotere) and 6 weeks of radiation. Then I took Arimidex for 18 years, stopped it and 7 months later was diagnosed with metastatic breast cancer (HR positive HER 2 negative) in all my bones including skull, and it is now also in my liver. I have failed 4 different chemo drugs (Kisquali, Xeloda, Gemzar and Trodelvy). I am now on Doxil, tolerating it very well but who know if it is working. My cancer markers are out of sight. CEA has gone from 2.2 to 11.4 (top of range is 2.9) and CA 27-29 from 487 to 2,303 (top of range is 38) I was prescribed Modafinil for extreme fatigue and it has had the added benefit of reducing chemo-brain signicantly. I have also had 4 lots of radiation to different parts of my bones and rods put in both my arms because the bones there were 50% eaten away by the cancer and each broke. I tell you all this because over the two year period I have had a different life than before but a life of joy, adaptation, and gratitude. I don’t know what the next PET scan will show in 2 months but I wake up each day and say to myself “OK. What does the new Julie plan to do today?”. And if I accomplish 10% of that, because of my lack of focus, I consider it a pretty good day. I have been blessed by a lack of pain, or lack of pain after targeted radiation treatments. I have found it helpful to search out specifically metastatic breast cancer support groups which meet by Zoom. John’s Hopkins has one and www.sharecancersupport.org has another. Again, I wish you didn’t have to deal with this, but you do. Hang in there, one day at a time, and sometimes one hour at a time. My heart goes out to you.

Leigh B, the bible verse that you mentioned in your response, is the very same one that was running through my head the other day. It was running through my head so much that I read through that whole chapter. Thank you so much. I don't know if I had mentioned in my post, but I will hopefully be turning 63 in September.

Hi Virginia, I feel your pain as I had breast cancer 13 years ago and was diagnosed with MBC last September. It spread to 1 lung and some lymph nodes. I was on Kisqali but I’ve have been off treatment for 6 weeks because my liver functions were so high. I start Ibranc on Tuesday.

Kathleen , there is so much advance , on one hand I feel happy that you have been cancer free for 14 years !! Stay positive … because your Oncologist is going to help you out … I have metastasic Breast Cancer and depending on your case , there are a lot of personalized therapies !! Be strong , positive and if you are religious bring in that Holy power too !! Blessings of Health !!

Hi Virginia, I was cancer free for 15 years until reoccurrence during the pandemic, and again, in June 2024. This is my fourth battle. I'm currently on a low dose chemo called Enhertu every 3 weeks, which targets a specific area. Stay strong, and I'm praying for you.❤️

I was first diagnosed in 1993, and I had a lumpectomy, radiation followed by tamoxifen for six years (my diagnosis was stage 1) I was in remission for approximately twenty-five years then in 2021 I was diagnosed with stage four I’ve been on Kisqali and Letrozole for the last three years until December 2024 my body has rejected the cancer medication, my oncologist will reevaluate me in March. Best wishes to all 💕

Much love to all of us!🩷

I was diagnosed with stage 1 in 2017. Just found out my original ER positive breast cancer has become triple negative and is in my liver. I will start chemo next week I think. I don’t have the protocol yet. Really scared.

Trista, Don't be scared. Stay calm and do not stress. You will be ok. Pray, meditate, talk it out, write it out, and shout it out. But don't stress.🙌🩷

I had breast cancer 28 years ago. Did chemo and had a mastectomy. I had regular mammograms but only on my left side for 26 years. Then a blood test led to finding metastatic breast cancer. If they had done a CT scan or MRI on my right side every few years, they would have found it before it metasticized.

Hello Virginia, My initial BC was Stage 1 the whole time, but I was a 13 year survivor before it came back as Stage IV Breast Cancer that metastasized to my bones about 11 months ago. It’s in my right collar bone and in my bones on the left side of my neck. I am on 2 different chemo pills for the rest of my life. The stronger of the 2 I have to take 3 pills a day for 21 days and then I’m off of it for a week to give my body a break. There’s no cure for BC that has metastasized to your bones, and any type of treatment will help to prolong my life, so I do not mind at all taking it for the rest of my life, as I have 2 daughters and a son…my daughters are 31 & 29 and my son is 32. I also have 3 beautiful granddaughters and another grandchild on the way!🩷. I fight for my kids and my grandchildren! I wish you all the very best with your treatment and I hope that you do very well! 🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷

How are you handling it? What kind of treatment are they giving you? Praying for you. I had been cancer free for 9 years. I fell and broke my pelvis in December. They did MRI’s and found that my cancer is back. Now it has metastasized to my bones. Pelvis completely covered, my lower spine and the tops of my femurs. I was out of it for about 10 weeks with pain meds for the broken pelvis. Now I am back and ready to fight. I have two injections a month and am taking Ibrance daily. I have been afraid to ask how advanced the cancer is. Just praying for more time. I have two granddaughters under two. I hope to get to know them. 🙏🏽🦋🙏🏽💙🙏🏽

Virginia !! You have been blessed with so many years cancer free … that is so nice … please do not panic …. Your oncologist will help you find the best treatment for this recurrence !! There are many advance therapies , that will provide you with many more years to go !!! Hang in there !! you’ll be just fine !!

I was cancer free for 15 years. Diagnosed with bone mets in 2023. It’s in my bones, lungs and vocal cords.

Hi I was diagnosed with stage 2 BC left side had a double mastectomy in 2022 then had a reoccurrence in 2023 stage 4 axillary lymph nodes 7 out of 17 positive pathology showed Macro-Metastasis. Largest tumor 1.5cm it also says Extracapsular Extension with all 17 lymphnodes positive for Metastic Carcinoma. I've been on letrozole and verzino and have an injection every 3 months to suppress my ovaries. This year I've had a lot of symptoms I'm 5 years out in this Journey my DNA said I'd get 9 years so I'm fighting I have 2 children ages 22, and 15 and I'm not ready. I have no support I moved 2.5 hours away to get the best care at the Mffitt I know if I stayed where I lived I'd be dead already I needed comprehensive care. I have 3 mutations BARD 1, 1 with significant mutation, and one with undetermined significance. I'm 48 today I was 42 when diagnosed I've been up and down with my diagnosis which is IDC, ER/PR +, HER2 positive mix anatomic. I just had scans done I have ill-defined soft tissue thickening along the left interior vaginally wall/vulva. Left hand FA Pruritis (skin cancer) they can't remove its scaring me the most I'm inoperable. Lung Parenchyma and pleural. Moderate Centrilobular Emphysema. Degenerative change on my spine. Old rt sided rib fractures T8 Intraosseus Hemangloma. Something going on in my Sigmond Colon. Everything scares me but ik I'm getting the best care I'm still alive fighting this monster called cancer . I live for today it's all I got I'm so tired.

I haven't read the other replies yet, but my heart goes out to you. Nothing prepares you for MBC — from my observations there’s no coordinated scanning or decent follow up and then BAM! you’ve gone from stage 1 to stage 4, and worse you’ve gone from something you can cut out or irradiate and you think you’ve moved on, and now you are in a chronic state of disease. My own situation was 8 years, and with an Oncotype of 2 — so yeah, I thought I was home free. 2 mets in my sacrum and spine and 3 lymph nodes — so far successful arrest of disease with Kisqali and Letrozole. I suppose I should add that I’ve been at this for nearly 30 years, and most people I know don’t have a clue that I am living with cancer (positive attitude, severely tested with this last go ‘round). 1st was 1996 — lumpectomy and radiation, then another (not a recurrence but a different type) in 2009 — for which I tried a DIEP flap that failed, likely from a superbug infection (so effectively a mastectomy) and then in 2015 a 3rd cancer, this time in my right breast. This last was hormone receptive, and at that point I was in the mood (🤪) for some major reconstruction, so I moved muscles around and rebuilt my myself, including repairing the damage from the failed DIEP. It’s a crazy crazy journey. What I wish for you is that you catch a break in all this, and that within the space of a year you’ll have managed to wrap your head around your new you, and that your therapies will work with not too bad side effects. And keep working.

Recurrence after many years of being cancer-free is unfortunately something that happens to some people in this community, and the shock and fear that comes with this news is completely understandable. Many members here have walked similar paths and found ways to navigate treatment options and maintain quality of life even with a metastatic diagnosis. Connecting with others who truly understand what this journey feels like can provide valuable support and practical insights during this challenging time.