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Progression question

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I have severe scanxiety right now…had scans yesterday (nuclear bone and CT). Previous insurance wouldn't pay for a PET, but since I have changed insurances recently I am going to pursue that again for the next scan. I'm told by my MO that I will have to have scans every three months.

My fear, of course, is that these scans will be compared to the ones I had in March, and show progression. Have any of you seen some progression but you are still doing okay, and did they change tx at that time? I've been on Verzenio and Fulvestrant since December.

How did you handle the bad news of progression? I feel fine…my bloodwork was perfect, I have no pain anywhere and am super active (hot yoga, hot pilates, bike riding, hiking at lot, etc.) but there is always, always the apprehension of what scan comparisons will show.

This will be the first time to compare 3 months apart scans, since I had a PET in Nov, and haven't had another one since, because of stupid insurance.

Claire

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  • moderators
    moderators Posts: 8,287
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    Hi @claireinaz,

    We just wanted to stop by and send some virtual hugs to you. We know you are struggling! Sending good vibes your way for good scan results. Please keep us posted with what you find out.

    While you wait for others' helpful and encouraging responses here, you might want to check out this link:

  • bighubs
    bighubs Member Posts: 35
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    @claireinaz,

    Is it just pessimism that is making you fear progression? It sounds like you have no physical symptoms of progression, but have convinced yourself in your own mind that scans are going to show something. I'll reassure you, based only on statistics, that your concerns are probably invalid. I know that probably does nothing for your anxiety, as you can't "think" your way out of it, but statistically the progression free survival of this first line of therapy is around 24 months. Are there people who have far less than that? Yep. Just like there are people who have far more than that. But assuming all things are equal, you should expect to be somewhere near that 24 months; as I recall you are around the 6-7 month mark now.

    Unfortunately, I cannot answer your question about progression as my wife has not experienced any progression yet. She is at about the 15 month mark since diagnosis and beginning treatment, but has the same type of disease as you manifesting itself in many of the same locations. She is also on the same type of therapy. From what I've read though, unless the scans show unambiguous progression which clearly shows the current therapy is not working, you'll stay on the same therapy and scan again in 3 months. If the scan shows unambiguous progression they'll likely switch you to a SERD (like Faslodex). Some patients who don't respond well to AIs and CDK4/6 inhibitors nonetheless respond very well to SERDs.

    I hope that helps.

  • lacombattante
    lacombattante Member Posts: 151
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    hi @claireinaz ,

    I am reaching out with support, virtual hugs and wishes for good news from the scan.
    Building on my oncologist words: the fact that you feel good and your bloodwork is perfect is very reassuring. I also think that the fact that you can carry on your super impressive fitness program suggests good news. When do you expect to get your results?


  • claireinaz
    claireinaz Member Posts: 693
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    Hi bighubs, I do think that my fear is overriding a lot of hope. And I feel that darkness more when I'm sleep deprived, which I was the night before last. I just found out that the ECHO I had day before yesterday shows periocardio effusion is completely resolved, but it showed up late last fall and and early this year…which can only be good, right?

    I'm too afraid to look at any other tests though they are in my portal. Lacombattante, I have a video visit with my MO first thing Monday July 1. She isn't the warm and fuzzy type, and I also feel some apprehension every time I see her. Usually I see an NP who is different-friendlier and encouraging, but my MO though competent, has ILC background and is a breast oncologist, isn't quite like that.

    Being reassured though news can be troubling is important to me, but not as important as a great MO.

  • lacombattante
    lacombattante Member Posts: 151
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    hi Claire,

    Resolution of pericardial infusion is a great sign! And I agree with Bighubs that stats are rather reassuring. My MO calls Verzenio with AI (Fulvestrant in our case) a ‘miracle drug combo’.
    I will be thinking of you on Monday, please share the outcome with us, but I think you have all the reasons to be rather optimistic.

    Interestingly, my MO is not the best communicator also…. But as you said I’d rather have a great MO than a great communicator who sugarcoats.

    Wishing you a very nice weekend and hope that the anxiety will subside

  • amel_83
    amel_83 Member Posts: 169
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    Hi, I really hope you don't have a progression. Also if your blood work is good, the eventual progression can't be that severe...or I think it is not there at all!

    I had a progression in my last scan, in bones and liver. But my blood work reflected it: high transaminasis and high tumoral markers.

    I was shocked at first, but than i realized nothing really changed...i just went from capecitabine to eve+exe.

    I felt well the whole time too, i take my pills everyday...everything exactly like before. Just no more headache caused by Cape!

    Off course I'm scared because I have a less line of therapy, but as time pass, new therapy get developed...

    Let hope for the best anyways!

    Best wishes, hang in there

  • claireinaz
    claireinaz Member Posts: 693
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    Thank you all. I will keep you posted. XXOO

  • claireinaz
    claireinaz Member Posts: 693
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    Scans show stability, ascites in abdomen basically gone—but tumor marker from 300 to 400. Any thoughts on what that might mean? I had no idea my TM was that high, actually, but it was much higher when they dx me in Nov. I don't look at my numbers and I shouldn't have asked my doc what they were, but she kind of volunteered them.

    She just said they'd follow me closely and that I'm doing well. She's not worried yet, just is following me closely and said we have a plan B and C in place.

    Help, please. I'm still terrified.

  • bighubs
    bighubs Member Posts: 35
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    Tumor markers can rise and fall for a variety of reasons unrelated to what the cancer is doing. It's not uncommon to get tumor flare within the first few months of beginning thereapy which can cause them to increase as well. Most docs who track them watch for trends. I.e., what are they doing over a span of months, not what are they doing month to month. As long as they are tracking steady over time or decreasing I think you should not worry.

  • lacombattante
    lacombattante Member Posts: 151
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    Hi Claire,

    First and foremost- congratulations on stable results! This is very good news!

    Re: tumor markers … I totally understand your worry!
    But I also agree with Bighubs that MOs are paying more attention to trends.
    My markers went up after first month of treatment, then they started to decrease (rather modestly). My MO explained that this is not unusual in case of hormonal & targeted treatment and that it is the trend that she is looking at, not the absolute value.
    In your case tumor markers were much higher at diagnosis and went down significantly with the treatment and this in line with your scans, which are showing stable / improvement. I dare say that overall picture looks rather good.
    Let’s hope that the slight increase this time was just a fluke and markers will stabilize, or go down at the next retest.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    claireinaz,

    I wish I had just the right words to ease your anxiety. You probably already know that there are many MO’s who do not do tumor markers as they are not considered to be accurate for a lot of people. I have never had tumor markers done. That being said, they are accurate for some but provide nothing actionable, particularly if other assessments look good. This is a convoluted way of saying that if your mo is not worried, particularly given the fact that tumor markers can be questionable, neither should you be worried.

    I know you are terrified. What help are you getting in dealing with your anxiety? This is important because of the high levels of stress it creates. Living with stage IV is not a picnic, even for those who are doing well, because the worry about progression is always hanging over our heads. Yet if we survive we know we will always face scans, tests, etc. as our health must be monitored so we have to accept that as a reality though not one most of us ever anticipated. However, I hope you can make peace with your situation, i.e. learn to not only live with the reality but find happiness in living even if it’s not exactly what you’d planned.
    You appear to be doing well so focus on that. None of us have crystal balls and worrying about what might happen is a real killer of joy. I have been stage IV for 13 years. 13 years that no one could have predicted. Getting my fears and anxiety under control (not easy up doable) has allowed me to enjoy those years. Isn’t that why we try so hard to survive? Give yourself time to adjust to being stage IV, get counseling as needed, and most importantly… don’t borrow trouble! Take care

  • claireinaz
    claireinaz Member Posts: 693
    edited July 2
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    Exbrnxgrl, I am getting plenty of help with anxiety. I've watched a husband die a pretty awful death from oral carcinoma after we were married about 3 months when I was 36, and then had my first dx 12 years later and my now husband dx a year ago with cancer, so I've experienced a lot that shoved me into severe PTSD. It never goes away completely, of course. I was getting a good handle on it with my excellent long time therapist and Lexapro plus plenty of exercise that removes the nervous energy, but now this latest has happened. I had GAD before everything began, long ago, too. It's something I live with, and will always, I'm certain.

    I wish at times we didn't do tumor markers, but when my markers began to rise in 2022 (from 30 to 60) my former oncologist came back into practice and I loved her so much I changed back to her. she doesn't do tumor markers. Didn't care about my rising ones. So I wonder, had I stuck with my old one, would this have been caught sooner. However, hindsight is 20/20.

    What do I do to counter anxiety? Every possible healthy thing there is out there, and some chemical things too. It's better some days, and worse others. When it triggers a memory of Bill dying or getting a bad lab report, or triggers the shock of getting the news like last Nov. that I was St. IV, it comes back.

    What do I do to counter anxiety? I come here, share, hear some encouraging, reassuring words, and keep living.

    I appreciate what you all have said. My oncologist, as mentioned, isn't very reassuring, and mostly acts worried when she works with me, which I read, in my hypervigilant way, as "she thinks I'm going downhill and dying".

    All this, and I bet some of you will nod your heads in agreement, is that it's all kind of an emotional salad a lot: for me, a mix of anxiety, hope, despair, anger, frustration and often all at once. I'm frustrated because I can't help hearing what other MOs told me in the past: "you have a less than 2% chance of a recurrence…", "I can't believe you are doing so well…" etc. etc. and trusted that completely. Anger that I took an AI for 12 years, with no break, never missed an appt, took care of my physical health, blah blah…and then had this happen. Hope that I dodged the bullet. Despair that I didn't. Hope that after this dx, I was doing great on Verzenio/Fulvestrant…then frustration and despair that in spite of thinking I'm doing everything I can possibly do, and religiously,I might have only 7 months of this drug working even at the highest rx possible. Hope that this is a blip but seeing my MO's face in spite of her "I'm not worried", makes me worried. Anxiety that I'm headed for even worse news. Hope that there will be better news.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    oh my friend,

    I wish I could help you more. I think it is very, very difficult to find yourself in a position where you did everything “right” but still recurred. The ugly reality is that regardless of what we do right and regardless of how small the possibility of recurrence is, someone will recur and there’s no way to predict who that will be. Both my stage IV dx and my lung collapse after port installation were things that had small chances of happening to anyone, yet both happened to me! The lung collapse (not outright originally but a slow leak) ? Less than a 1% chance of it happening and not being discovered in the post surgical x-ray. I think that’s one of the most difficult things to accept about bc. It really is almost beyond belief to realize how far we’ve come with treating bc, yet a cure is still elusive.

    Glad you have a handle on the anxiety issue. I hope the passage of time will ease your stress. I am not saying that we get used to being stage IV, but most of us come to understand that this is our reality and find… a new normal (Not crazy about that saying but it is apropos). Yes, it’s a tough reality to confront but we can do everything under the sun to prevent recurrence, yet still recur . It stinks but it’s the present state of bc. Be good to yourself.

  • claireinaz
    claireinaz Member Posts: 693
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    exbrwngrl, thanks much; you are a voice of reason in a sea of cognitive dissonance these days. I just hiked 7 miles with my girl group (we call ourselves the Trail Dusters) yesterday; it was a hike I led, and I thought it was 5.8 miles and it turned out to be …a little more. We are all in our sixties and seventies and enjoy hanging out together. But if I'm progressing, I would like to think I wouldn't be able to hike 7 miles at 8500 feet elevation, right? Or get up and go to hot pilates at 6 a.m. this morning? I'm doing everything I can to stick around…in spite of the numbers game we are forced to play during monthly labs.

    Happy 4th, and to everyone else too.

    Claire in AZ