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Third time unlucky Stage 4

I had my first diagnosis and treatment for breast cancer in 1994 when I was living in the US. I had a lumpectomy, chemo and radiation. I was cured! and we never looked back. In 2017 my mammogram showed a reoccurrence in the same sight. By this time I had moved permanently to the UK. I had been widowed and still grieving the loss. My two children were grown and no longer living at home. My decision was to go ahead with the mastectomy and try letrozole for a few years. I was also tested for the mutation of the BRAC gene. I am brac2 positive. Last summer 2022, symptoms started with backaches and breathing difficulties. My diagnosis came back as stage 4 metastatic breast cancer. No cure, but several treatment options. I get three injections a month and 3 weeks of kisqali. I am on my ninth round. I realise this is a US organisation and treatments and options are different here under the NHS. (And sometimes names of drugs and terminology differ.) But regardless, much is the same and I feel this sight is much more informative and supportive than others. Last week my CT scan came back with a new 'something' on my lung. Radiologist wants to wait for another scan in two months time. Makes sense. Of course I am very anxious. I do not know if I will continue treatment if my option is chemotherapy. I was 37 and very bold and determined when I had the red devil. I will be 68 and I am not very bold and my will has taken to many hits. Has anyone made that decision? Does anyone want to talk about it?


  • moderators
    moderators Posts: 7,888

    Hi @marcybeth, and welcome to You've certainly been through this rollercoaster for quite a while.

    We're so very sorry for the reasons that bring you here, but we're so glad you've found us. You're sure to find our incredible community an amazing source of advice, information, encouragement, and support — we're all here for you!

    Our Stage IV forums are chock full of wonderful members always willing to help, and completely "get" where you're coming from. You're sure to have some great responses here soon.

    Can you share exactly where your original mets were located? You mention back pain and breathing issues as symptoms — are we understanding you were diagnosed with bone and lung mets, and now potentially progression in the lung? We can point you to appropriate threads to meet others with similar diagnoses.

    Also, there's a Kisqali thread you may find helpful.

    We also wanted to invite you to our super supportive weekly virtual Zoom meetups for our metastatic members — you can see the days/times and register here.

    We are sending gentle hugs and look forward to getting to know you and supporting you.

    —The Mods

  • eleanora
    eleanora Member Posts: 292

    Hi Marcybeth

    Sorry you need to be here, but welcome!

    The mods have given you some good recommendations, but my treatment plan is similar to yours, so thought I'd share my experience.

    I was initially diagnosed Stage IIA in 2019, lumpectomy and radiation (low oncotype score so no chemo needed), and placed on aromasin. In May, 2022, I was diagnosed stage IV with bone mets. I had radiation to two of them and started Kisqali/fulvestrant/xgeva. I am in my 13th cycle.

    What type of mets did you have in 2022 that placed you in stage IV? All of my scans for the past year have shown 2 tiny modules in my right lung. They haven't grown or changed in any other way, while my bone lesions have all responded well to Kisqali.

    I have not yet had to make a decision about chemo, but at almost 73, I would certainly have to give it some thought.

    It would be very helpful if you filled in your cancer treatment info in the signature setting. That would make it easier for people to respond to you.


  • marcybeth
    marcybeth Member Posts: 2

    Thank you for your responses. I thought I had filled in the signature. I will take care tomorrow as it is nearly midnight on my side of the world.

  • spookiesmom
    spookiesmom Member Posts: 8,167

    My first dx was in 2012, stage 3,grade 3. Tx was poison, slash, burn. Followed by a few years of AIs. I couldn’t tolerate any of them, so stopped them. 2nd dx came in 2019, with a small lump on the non cancer side. Slash, burn.

    Had annual PET late January 2023, nothing lit up. In may, my tumor markers jumped considerably. Another scan showed bone Mets in 4 places.

    Now it’s falosadex, ibrance and zometa. I have too many cardiac issues for kisquali. If I fail this, and he recommended chemo again, I will do it. I’ll be 75 soon, and just not ready to check out.

    Hang in there, you can do it!!

  • wren44
    wren44 Member Posts: 7,863

    Hi Marcybeth, Welcome to the club no one wants to join. My initial diagnosis was 1b in 2011. Last May I had trouble breathing and went to the doctor. I had a pleural effusion in one lung. Scans and biopsy showed a bone met causing the effusion. I started on Xeloda but was so dizzy I couldn't stand up. Now I'm on letrozole and Ibrance with zometa infusions every 3 months. I have scans on Aug 7 to see if this is working. I received a drain in the pleural cavity and over a few months it stopped producing and the drain was removed.

    I have wondered what I would do if the scans show it's not working. I'm 82 and my husband is 83 and in care for Parkinson's and dementia. I definitely want to outlive him because I think I can handle losing him better than he could deal with losing me. I'm living with my daughter and her husband. My son is a 4.5 hour drive away. If they say chemo, I will demand a port given that my veins are small and tend to roll. Have you discussed your feelings with your children?

  • kaynotrealname
    kaynotrealname Member Posts: 366
    edited July 2023

    Hi Marcie! is a great UK site. The typical commenter is not as educated as those in the US but all are very knowledgeable about the NIH and can advise you accordingly. Right now they are being updated so you can't post or reply over there but they should be done any day now and will go back to normal. They get a lot of traffic, too.

  • margarita12
    margarita12 Member Posts: 13

    Hello Marcybeth,

    Your story is so similar to my mother’s.Her initial diagnosis was in 1996. She did surgery, radiation and chemo and on letrozole for 10 years. In July 2022, after my father’s death in 2013, she was diagnosed as stage 4, with mets to sternum, small nodules on lungs and lymph node in chest. She is currently on verzenio, faslodex and exgyva. She seems to be doing well. I hope this line of treatment will last for a long time. Unfortunately she feels fatigue and itching but I after her recent dose reduction I hope the symptoms will ease. I wish you do well on your current treatment and live a full life close to your children and friends.

  • ohionana1605
    ohionana1605 Member Posts: 67

    @marcybeth , are you the lady who recently visited the zoom group on Monday for METS? There was a lady from London and I do hope she’ll come on again.
    @Wren, I am almost 78 so I understand. We lost our adult son in 2021 about the time I was dx with Mets to liver. The grief has been harder to deal with than the cancer. My dh is in good shape and is taking good care of me and I pray he outlasts me. Not sure if my profile is showing but currently on Herceptin in my port every 3 weeks and Letrozol pill daily. My faith is what keeps me going but it’s a hard journey.