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I am so mad

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dulcea
dulcea Member Posts: 96

I hate being here but here I am.

Diagnosed stage IV to liver (20+ lesions), lung, spine, pelvis, skull (so I am not long for this world).

I have no symptoms. It was caught during a routine MRI for my ongoing bulging disk issues. I have had other radiology over the past 7 months and there was nothing in these places. I had a low dose lung scan two months prior to a scan last week and it shows growth of a 1.3 cm solid lesion on my lung. My point is, this seems aggressive.

The liver biopsy is being send out for FISH staining to determine the aggressiveness. Based on what that shows, I will either start chemo or ibrance. The MO told me that if it is not aggressive and since I am asymptomatic, she would prefer the immunotherapy since it has few side effects. Then she would suggest chemo when things became symptomatic. I didn't really understand that. She wants to make me feel worse when I am feeling terrible? Maybe it's a quality of life thing. Maybe she wants me to feel good for as long as I can. I will ask about that.

I will be asking about that. I also don't understand what chemo does to stage IV cancer. Can it completely kill it? Excuse my lay terms.

I'm sure you all know what has been going through my head so I won't even go there. I hate this. I am so mad. I am usually a huge proponent of doing research and educating myself on everything affecting me, but I don't even want to know about this.

Thanks for listening.

Comments

  • vlnrph
    vlnrph Member Posts: 487
    edited September 2023
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    Oh dear dulcea, I am also mad (and sad) for you. However, many of us survive for years with bone & liver metasatases. Please note, that skull involvement is not the same as brain so your treatment success is likely to be different. While it’s always good to “get affairs in order”, don’t make any big decisions right now regarding those issues while you’re upset.

    CDK 4/6 inhibitors, not immunotherapy, are standard of care for most with your diagnoses. MRI is more sensitive in picking up soft tissue abnormalities but cannot describe specifically what all of them actually are. Your hepatic lesions might have been benign if not for being so numerous. So, getting a biopsy on a larger one is key to understanding options.

    Perhaps genomic testing of the tumor is being done too. That would tell you whether there are mutations that could be acted on. Should you be found HER2+ that would mean an IV type of chemo. When up to it, check out/introduce yourself on the Stage IV forums. Tons of good information plus support can be found in those pages. Knowledge is power!

  • moderators
    moderators Posts: 7,918
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    Hi @dulcea,

    We are so very sorry to hear of your progression, but we've all got your back. As @vlnrph mentions, our stage IV forums are full of amazing members always willing to offer advice, encouragement, information, and support — we're all here for you!

    We know it's a lot all at once to take in, but when you're ready, you may find it helpful to read up on Treatment for Metastatic Breast Cancer to understand the options and what they mean for you.

    In addition, we'd encourage you to join one (or as many as you'd like!) of our weekly MBC meetups to get virtual face-to-face support from some more incredible folks facing similar experiences.

    We are sending you big hugs while you navigate this new diagnosis. Please don't hesitate if there's anything we can do to help.

    —The Mods

  • bright55
    bright55 Member Posts: 146
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    Hi Dulcea

    a lot to take in when first diagnosed and a lot to understand and learn about😊for us chemo is not a cure it only slows progression

    Like you I was asymptomatic hormone positive ..I have lung mets

    Now eight years in treatment

    generally Treatment is for three types of AI drugs or anti hormone then a chemo

    The treatments slow down the cancer progression

    No progression is called stable

    Scans are done usually every three months ....

    Cancer marker tests are an indicator for me that the drug has stopped working

    So I start another drug or even a dual therapy ..you will be able to read the treatments I have been on below the reply

    xeloda is my first Chemo

    since starting in february I am still stable

    All the best

    Bright in hope

  • spookiesmom
    spookiesmom Member Posts: 8,168
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    I was originally dx in 2012, was in remission 7 years. Came back in 2019, then remission for 4 years. Came back AGAIN this year. This time in my bones. Found by a jump in tumor markers. MO put me on ibrance, falosadex and zometa.

    My tumor markers have dropped 141 points since June. There is hope! As of Sept 25 they were at 181.

    Yes, I hate taking that pill every day, being reminded daily I have cancer AGAIN for the THIRD time but I do it, don’t like the alternative.

  • justme1964
    justme1964 Member Posts: 12
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    so 1st diagnosis in 2018, came back 2022, been on verzenio and falosadex, with xgeva every few months. all my pet scans have shown steady and some areas resolved. with my tumor markers going up from beginning of year to now 40 points doc wants to scan again, she said it is a precaution since the pet scan looks good.

    She told me not to freak out or get upset, but it is hard.

    How worried should I be? meaning cancer is getting worse???

  • moderators
    moderators Posts: 7,918
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    @justme1964 many people find the tumor markers don't really say much (or anything) for them regarding their cancer and progression, where others say it lines up. It appears very individual. The doctor is being very on it and that's great.

  • dulcea
    dulcea Member Posts: 96
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    @justme1964 my tumor markers stay the same no matter what.

    I understand when you say it gets hard not to freak out! Believe me. I have good days and bad days. I have good days when my Dr. and medical appointments are spread out and not occurring daily. Something that has helped too, is that I limit my research or phone calls or thoughts about this stupid disease to every other day. I try to push it out of my head when it enters on my "stress-free" days. It helps to have the thought that "I'll worry about that tomorrow".

    I wish you the best with your scans and don't worry until they tell you to!

  • justme1964
    justme1964 Member Posts: 12
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    well, we see at my next scan… Lots of questions when I see the doctor next week…

    can other things increase tumor markers that are not cancer-related?

    I have heard some women's tumor markers never increased and were diagnosed with MBC… and still have not increased.. hey as long as they are treatments to keep me going for many many many years. I am ok with taking meds forever…