I was just recently diagnosed with MBC in January 2024 but no stranger to breast cancer as I had already had a tangle with (what I was assured was a very low risk) breast cancer back in 2014 and underwent surgery for a lumpectomy and a subsequent regimen of 6 1/2 weeks of m-f radiation.
I thought all of that was behind me but, 10 years later…. here we are 💔
For me, it presented as a bowel obstruction which they say is ultra rare with only 3% or fewer experiencing metastasis of breast cancer to the colon.
This resulted in an emergency surgery that left me with a huge zipper scar down my middle, a colostomy and a mountain of bills. Thankfully I am a candidate for reconnection surgery once things are completely healed from the tumor removal. The colostomy has been difficult to deal with physically and emotionally so I am glad to have something to look forward to! I am also thankful for a supportive husband, family, workplace and for the work-sponsored insurance that we had in place or we’d definitely be medically bankrupt already.
I haven’t even been able to have my PET scan yet due to the need for all of the inflammation from the emergency surgery to chill out so we don’t get false positives. The surgery was 1/26 and it’s now mid April so you can imagine how excruciating the waiting has been but helped slightly by Ativan. If you’re not asking your doctor about help with anxiety, you should be.
My PET scan is scheduled for 4/26. Finally. I am equally scared of what they’ll find and hopeful that they won’t!
Thankfully a bone scan turned up no evidence of spread to these old bones. I am clinging to this bit of good news tightly. My other blood work has been good and stable.
I’ll have my next round of blood work done on the 15th to see how my body is handling the Kisqali.
I have also have 2 other appts set….
One with the surgeon to discuss reconnection and another with palliative care just to get that established and in place early.
I’m happy to have found this community and will be sure to ask more questions once I have more answers from my medical team. I will also do my best to answer questions if I can!
Thanks for the welcome 🙏🏽
Cat Lover in the 206☔️ ❤️🐾
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CatLoverinthe206
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Welcome to the group! I’m glad things are going smoothly for you and your tests have been great! We isji g you blessings for continued health. My Mom was originally diagnosed in 2005 with dcis and she had a lumpectomy and radiation then. Her oncologist at the time wasn’t worried about a reoccurrence but in 2020 my Mom was diagnosed with lobular MBC. We were shocked and very upset as I’m very close to my Mom. She is doing well and started out with Ibrance and letrozole for 2.5 years and is now getting fulvestrant injections with a trial med for about a year so far. Her labs have been great and her scans are stable with possible shrinking of the one liver lesion. Know there are many good treatments out there and you can live a very active and full life with this diagnosis. My Mom and I both take a low dose anxiety meds which have really helped with stress management and sleep. We don’t think about the diagnosis too much anymore which is how it should be. Live every day with hope, strength, love and joy. I wish this for everyone 💜🤗🙏🏻♥️. God bless 🙏🏻💜💕
Your message made me smile! Thank you🙏🏽 I’m so happy that she’s beaten the odds! When you read articles about how low the survival rates are, it’s easy to do a serious nosedive and become filled with despair. Your mom’s story and others like it should be more widely published! I am so happy your mom is doing so well and she’s lucky to have you by her side too!!
Thanks for being my first response and such an inspiring one too 🌸☀️🌊
Hello CatLoverinthe206. Thank you for sharing your very brave story and welcome. Overcoming such a rough start and sharing your story here for others is inspirational. While the start was tough there is much to be hopeful about with today’s new treatments and more treatments on the way. Hoping you recover quickly and your care team has lots of good options for you. You will surprised at the full lives many MBC patients and caregivers here on this site are living. They are an amazing group of strong people enjoying family, friends, and pursuing interests. Best wishes for success from here on out.
Welcome to our group. It is a great place for support, advice and information. It sounds like you have been through a lot. I'm sorry for what you are going through but hope that your scan and bloodwork will bring good results and that things can get back to some type of normalcy after you have your reconnection surgery. I was originally diagnosed with Breast Cancer in 2013 and had a mastectomy. In October of 2020 I was diagnosed with MBC. I have been on Ibrance and Letrozole since then with good results so far. Hoping to stay on these meds a long time. I am fairly active and also have a loving, supportive husband and dear friends and family who help keep me strong and positive. Best wishes to you. Sending hugs and prayers.
Nice to meet you Cat! Welcome to the club! Never have I heard MBC in colon as first iteration but there you go.. Do you know if your first Bca was lobular vs ductal like me? The reason I ask is that It tends eventually to go to the gut…my spread was first seen bones… then liver and now all over gut.
It may be a blessing for you and hopefully could be CURE! If they got it all… and it was small. That would be a lovely situation. Surgery isn’t possible when cancer is diffuse.
My nephew had a colostomy and then reconnection and is living a fine life with no repercussions… you are so smart to take the anti anxiety meds right away… you will at some point adjust to the new normal and maybe not need it.. but during this time it is just so scary.. one tip that I use… is to listen to podcast to go to sleep.. I put it on very low and strain to listen and then drift off.. but if I don’t do that my thoughts ruminate and keep me awake. Let me know how you go and I am rooting for you to be a success story!
That is really hard, living with a colostomy. I always like it when my mets do not affect my life, are invisible and I cannot feel them. Sometimes there is a constant reminder.
People always advise me that the stats on survival are off. There are so many new treatments, even for forms of mbc that used to be lethal -- like triple negative -- that more people are living longer, and some for many many years.
I started palliative this year (fifth year) to deal with side effects of some of the meds. Every time I talked to someone about it at the hospital, they reminded me that palliative is not about dying but about living, They said it so many times it was annoying. You don't turn to palliative when the cancer is untreatable. That is hospice. I found it really helpful. Mostly it was that they referred me to rehabilitative medicine and that doc referred me to PT to work on joints that had gotten stiff and sore. It worked and I got strength and range of motion back. I also have an oncology nutritionist who helps with diarrhea from the meds, makes sure I get enough protein, advises on supplements (mostly don't).
I’m sorry that you are here, but it is a wonderful group to belong to. You will find so many helpful folks who are more than happy to share their journey and reactions with us all. It is a Godsend.
I look forward to hearing your success story (I know it will be!). Good luck these next few months and we all hope you will make it through with ease!!
so sorry to have to welcome you to this little band of warriors. I’m so sorry about the colostomy but so many have written that this can likely be reversed. Believe that,
While I’m older than you (71) my story is similar insofar the return of a breast cancer that I thought I had left in the rear view mirror. Suddenly I was limping and it was MBC in my pelvis. As many women have written, there are many many new treatments and the survival rates are rising. Please remember that statistics are made up of lots of people who hay not have taken the meds or been diagnosed appropriately…or have other co-morbidities.
The side effects of many meds may be hard to deal with, mostly the elimination of estrogen which brings on arthritis pains, the weakness caused by poor blood numbers, and overall exhaustion.
I’ve found that harsh med schedules and dosages can really sap you and I’ve asked for lesser dosages or med breaks to help with the side effects. When I was on IBrance, after two years of neutropenia I followed an alternated dosing of 5 days on and two days off..game changer.
After IBrance failed (36 months) I did radiation to address new bone Mets on sacrum.
But I had these terrible pains down my legs, weakness and like electric currents. I was offered more meds but I kept squeaking about an MRI to see what was going on with my back. Even as I was recovering from Covid, and a miserable rash reaction to Piqray, a neurosurgeon looked at that MRI and told me he could fix my leg pain…it was spinal stenosis!
Today I’m 5 weeks post surgery. The interruption of Piqray and then the restart has allowed for a good tolerance of Piqray. My legs are a great and I can walk…I’m looking forward to golfing again!
My Point: don’t let the doctors put you up on the cancer shelf and just assume that everything is about the cancer…advocate for yourself. Keep squeaking until they listen. Ask for changes. Research. Research. Ask questions. And believe that your meds will do their job. You can do this. 🙏🙏🙏
Thank you so much for sharing this wealth of info! There’s so much to learn and prepare for! I am thankfully a very proactive self advocate as my mind is always thinking of questions to ask at my next appts. I feel that with all of the uncertainty, the best way to arm myself is to fill my coffers with info! I. Glad you’re feeling better post-surgery and here’s to a hole in one or at least shooting your age🏌🏽♀️ ❤️😎
Dragonfly2 I think I accidentally added the golf reference thinking that love2golfwell was the one who responded instead of you! But maybe this is your sign to go golfing? 😊
Thanks for your great reply. This is a wonderful group of people that I feel lucky to have stumbled upon
So firstly sorry,……. But welcome to a wonderful place Catloverinthe206.
From an old time to MBC. 6 years from diagnosis in May. Just started 2nd line of treatment. And a bit different to you in that not as full on any time before, meaning only ever had two lumpectomies.
but now moved from Ibrance/Anastrozole to Alpelesib/Fulvestrant now. I am just so thankful for this extra time and all our sisters before us who went on trails. And others who have paved the way for us to suffer less and for teaching doctors and oncologists how to respond to us. (Hopefully). Not always. But my sister died very quickly 14 years ago due to this and she also gave up hope very quickly. So I’m thankful for learning from her too. I really think having a passion, (I have two,) to keep up hopeful and rich in our lives, really does help.
Go well in these early days and keep positive but real.
Hello CatLoverinthe206, welcome to our club. I am so sorry you are going through so much.. I too found out my MBC diagnosis through an emergency room visit. My PCP, during an office visit, sent me to the emergency room because my blood pressure was out of control. The cancer was causing me pain, it turned out to be neuropathy. I too had cancer 26 years ago when I was 36 years old. I am 62 years old now. Please keep us updated on how you are feeling and doing. We are here for you. It's a safe, warm inviting place to share. Prayers and hugs 🫂. Alicia
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