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It's back. Need help and hope.

claireinaz Member Posts: 662

So the thing I've been frightened would happen for 12 years happened. Recurrence. I'm too afraid to look at my PET right now (every nerve in my body is telling me NO, so I will honor that, since I'm a quivering, heart pounding mess at present, medical PTSD on full red alert, catastrophic thinking roaring at supersonic speed): why would it matter what I saw? I know it's in me again. It is in stomach, lung and probably ureter. Not in bones so far she thinks. I couldn't bring myself to ask more because I was in shock when I saw her Friday.

My Mayo oncologist is certain it is a return of ILC (biopsy scheduled in two weeks, then pathology, sequencing of the tissue, etc. etc.), and that it was there for some time but that the Aromasin was holding it back, and that the hobgoblin cleverly figured out how to bypass it finally. I get all that — I've read the research about how cancer behaves and how ILC behaves. I was always high risk because of original dx. I get that, but:

My WBC, RBC, all CBCs are normal. Which baffles me. I have no symptoms. I thought I was in the best shape of my life to date (age 65). I just hiked 9 miles out of the Grand Canyon 3 weeks ago in a day, for heaven's sake.

No shortness of breath, except for my anxiety, no pain, no aches, no nothing, except for that pesky urinary problem we initially thought was overactive bladder. And that pesky loose stool sometimes thing that was dx as IBS and controlled with adding fiber.

The fact that I have no symptoms seemed to lift my oncologist's spirits and thought I could get at least a few more years. Wow, I've never heard my life described in a "few years", ever.

I go to hot yoga 4 times a week and walk (miles) a lot. I meditate, I was having a happy life, getting ready to retire from university teaching.

I've been Swedish death-cleaning the past two days. I'm getting out my will today and updating funeral arrangements. This is where my head is.

And my 79 year old husband currently is in bed, napping off the fatigue of his androgen-deprivation injection. He has advanced cancer, too: of the prostate. We seem to be in some horrible, awful race to the end.

I'll know more in a couple of weeks (mutations, genes, all that), 27-29, aggressiveness. MO is having me start Verzenio and Fasolodex? I think that's it. One pill 2x a day and an injection 2x a month.

Once pathology is confirmed I'll jump over to the ILC boards, or should I do it now?

I need hope, reassurance, and NO fear-based, alarmist words right now. I need to know there is more time out there for me. I'm afraid that the drugs will affect my QOL so badly I won't be able to be my normal active self, one that relieved PTSD by moving my body regularly. This is just too much to take in. I can't do it. Crying now, so must just just "post" and be done with it.



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648
    edited November 2023


    I cried reading your post, and I am not a crier. This is a hard pill to swallow for sure and I think the beginning is the hardest as most will agree. That being said, I will not be an alarmist but I will also not sugar coat or give false hope. We are adults and I have too much respect for you to sugar coat reality. I also think it would be appropriate and helpful to join in on the ILC threads now as those folks have already walked in your shoes.

    At this point in time, stage IV is not curable, but everything is not immediately bleak. So many treatments exist today that didn’t exist over a decade ago. These treatments will likely prolong overall survival. In my mind that means even newer treatments may come along to increase that survival even longer and, perhaps, finally a cure will be found. Treatments effect folks differently and it’s difficult to predict how much of an impact treatment will have on QOL. Many of us switch treatments if one becomes intolerable and most find something that they can live with, even if it involves taking other meds to combat the side effects of the cancer meds. While this is far from perfect, I have seen folks survive for longer periods of time while still finding happiness in day to day life.

    I am a bit of a stage IV unicorn in that I have had 12 progression free years after taking AI’s all of that time until recently. After 12 years, the AI’s became pretty rough* so I am currently on a hiatus from all tx. I did this at my MO’s suggestion. So, while no one has a crystal ball, there is reason to hope. I know that is difficult to see in the beginning but as you move forward you may find that hope as well as understanding the current limitations of stage IV tx. It is definitely a weird emotional balancing act. I also want to say how sorry I am about your husband’s health and understand the emotional toll that takes as well. Take care and take one step at a time.

    • I was the opposite of most, whose bodies adjust to AI side effects after a time. I had few se’s for years but they became cumulative and 12 years is a very long time to be on them. A good example of how se’s can be unique to each person.

  • elainetherese
    elainetherese Member Posts: 1,625

    Oh Claire. I am sorry. I am glad you are pretty much symptom-free, however. I have been on this site since I was first diagnosed in 2014. I have seen some of our BC sisters and brothers pass away, but I have also become acquainted with some long-term survivors of Stage IV. I sincerely hope you will be one of them. ((Hugs))

  • moderators
    moderators Posts: 7,685

    ((((((((Claire))))))) Gentle hugs your way!! We're all here for you. Rant and cry to us whenever you need. New treatments constantly evolving. Sending you love.

  • claireinaz
    claireinaz Member Posts: 662

    Thank you. I know the nature of this disease too well—, but right now I need a little sugar-coating and no reminders that this is serious, or life-threatening, or mention of people dying. I know all this; it's why I.AM.TERRIFIED. I am trying to keep myself from doing a Thelma and Louise thing here, and drive off a cliff.

    Exbrowngirl, I've followed you for years on these boards. I think it's amazing that you are NED and probably one in a million.

    I need people to tell me some good things right now or I'll just go crazy. I am planning my funeral, for pete's sake.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648


    Planning your funeral? While I make no promises, I am fairly sure you won’t need those plans yet and quite possibly not in the near future. The life extending drugs that have been developed over the past decade or so have been a small miracle for many. If you’ve read my posts, I often quote my late mother, “Don’t borrow trouble!” Try to focus on the here and now and things that you know for certain. Yes, pragmatically, it’s probably good for any stage IV patient to put some thought into end of life planning but that doesn’t need to be your focus right now. If you find yourself struggling to cope, seeing a therapist and perhaps a psychiatrist for meds has been very helpful to many of us. Yes, it all still stinks but don’t put your foot in the grave just yet. As for me, I only wish someone, anyone , could figure out why I have done well so I could share it with everyone. Yes, lots of unknowns but hope as well.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I am so sorry, Claire. I don't know enough to try and sugar coat this but I do know that it's a great thing you feel fine. This is not affecting your body right now and if they find a good combination of drugs to slow it down or halt it (which should be quite possible considering the sheer number of drugs we have out there) then I don't see any reason you should be planning anything at the moment unless you just feel personally inclined to be industrious. You are at the best place for treatment with a wonderful doctor who has access to trials and can guide you. There is still so much reason to hope.

  • claireinaz
    claireinaz Member Posts: 662

    Thank you exbrwn girl and Kay. I needed to hear exactly that. I hope a few more will give me a little more confidence that I’m going to survive a while.

  • claireinaz
    claireinaz Member Posts: 662
    edited November 2023

    What is hard are the triggers. My late husband was diagnosed with terminal cancer head and neck this time of year and died in Jan 1996, and we had only been married 3 months. I remember his MO shaking his head and saying there was nothing to be done. He had already had lots of pain in his back and leg, so it had metastasized again right after his second return and tx. We got married thinking he was okay and a few weeks later we found out. I can’t unsee all of that during this time of year. Lots of reminders every November and December. Struggling a lot with trying to control catastrophic thinking and obsessive thoughts.

  • katg
    katg Member Posts: 206


    Keep walking. Keep taking the best care of yourself. Let what you have heard take a back seat. I too read your post and my heart sunk. I am grateful for all of you that come back and keep us updated. We have no idea how many who have been right where you have been!!! Stay in today. Please. Your husband's health made me tearful too.

    Advanced directives are asked for and i still have not given mine to the COH. I figure to do it when i see someone in person in February. Also, I took Gerontology classes in 2009-2010. Death and dying was one of the classes. End of life planning was suggested. My Mom did not plan, so at 85 when she died her wishes where not known. I knew them, but she did not write them done. My brother was the executor and listened to none of us.

    Plan, but get outside and go somewhere…… anything you enjoy. Just for today, the plan of treatment has not been provided. I am praying for HOPE.

  • aprilgirl1
    aprilgirl1 Member Posts: 743
    edited November 2023

    Claire, I am so sorry to hear this news. I had a stage IV recurrence in 2019 . Original stage 1 cancer was in 2008 so 11 years later.

    I have never had elevated tumor markers - ever. However, I had a paralyzed lymph node and weird pressure on my wind pipe which is how we eventually found the stage IV recurrence.

    I am here to tell you I feel good on Ibrance and faslodex . Not kidding ! I work full time selling real estate and had the best sales in my 12 years in 2020 and 2021! I could tell the medication was working within 2 weeks as the pressure on my wind pipe greatly reduced . My scans have been clear or no evidence of active disease since 9/2020 (about 9 months on Ibrance/ faslodex). I've been on ibrance / faslodex for 4 years now and scans have been clear for over 3 years .

    I am so sorry about your late husband's cancer and your current one also having cancer . Please remember that hormone positive breast cancer does have targeted treatment which has been a miracle drug for many of us .

    We are here for you and as Exbrnxgrl said - this is the hardest time , waiting for the tests and treatment to start. I would hop over to the ILC group. They can give you specific pointers on scans etc .

    I am an avid hiker and have remained very active and I think once you get things settled , you will continue to be active .


  • gailmary
    gailmary Member Posts: 417

    Claire, I'm so sorry to hear your news. I have to think you have lots of reason to hope, trust even. I know nothing of ILC but I saw you mentioned Grade 1. I can't help but wonder if that's the reason exbrngirl has been with us so long. I'm grade 1 also and have been stage 4 almost 7 years with no more progression to date. Feeling pretty good.

  • claireinaz
    claireinaz Member Posts: 662

    Hi gailmary thanks for the kind words, not sure what my grade is now. I'll find out when the pathology is done after the biopsy. My MO says it's still important. I was grade 1 when originally dx. I'm trying to deal with crippling anxiety and it's what is taking me down currently.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I'm so sorry, Claire. About 10 years ago I lost my mother to a virulent cancer seven weeks after diagnosis and like you watched her whither away with nothing I could do but be there. And it screwed me up for years and quite honestly still does. So I get that kind of crippling anxiety when dealing with cancer. But truthfully, breast cancer is a different animal than most other cancers out there just because of the sheer number of treatments. They just come out constantly and most are quite effective from what I've read. Your husband's end will not be your end I can promise you because you know more than you did then and his cancer isn't your cancer. You'll take advantage of what they'll offer to glean as much life as you can. And when you can't anymore you'll have other things to take advantage of to keep your comfortable and happy but hopefully (and genuinely so since there is so much out there for us) that won't be for many many more years.

    I will add this since it's been quite comforting for me although I wouldn't have thought it. My aunt was diagnosed with the same cancer as my mother but although it was still stage 4 when diagnosed it wasn't an advanced stage 4 like my mother's was. So she's gotten a few more years cancer free and when it finally came back she's just been rocking it. Truly. Still doing well a year in and just popping pain pills like candy and living her life. Always cheerful and very grateful for a life well lived. It's an inspiration to me. I mean she's probably as high as a kite but who cares. Floating isn't so bad and that's my plan when my time comes, too. I just want to float on out smiling all the way.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Oh no Claire. I am so sorry. I really don't know what to say except to try and hang in there.

    I am also widowed by cancer after 35 yrs. of marriage. At one point in his treatment, I was sent for a biopsy. I was hopeful it was scar tissue (and it was)- but there were a few days of anxiety of how in the world do you tell your children both of their parents have cancer?

    I was overwhelmed with grief after his death so much so I almost did not go back to any appointments for myself. I wanted to give up. I had to reach out for help after about 9 months. Thank you, Prozac. Please reach out if you need-to anyone who will listen. It helped me get back to living my life. I hate that you have to go through all of this, and I know how cliche this sounds, however, it really is true for any type of life changing event. One day at a time. When I couldn't do a day, I did an hour. When I couldn't do an hour, I did a minute. When I couldn't do a minute, the only thing I could do was to just worry about breathing. In and out, in and out until my mind and body calmed to a point of nothing but the breathing. Then, I could move on with whatever decision or task I was to take care of all by myself to finalize things.

    It seems you have surrounded yourself with some wonderful doctors. I'll be keeping you in mind as you go through these next few weeks. Keep going!!!!

  • piggy99
    piggy99 Member Posts: 183

    Claire, I am very sorry you have to go through all this, and can only imagine how scared and overwhelmed you must be. I am not very good at comforting words, and I was diagnosed de novo, so I do no have personal experience with a recurrence, but I am sure there will be many of our wonderful members jumping in with their stories and encouraging words.

    Instead, I looked up the clinical trial data for your treatment, Verzenio and fulvestrant, and I think there is plenty of hope in there.

    The trial enrolled people who progressed on endocrine therapy - some of them, like you, progressed while on endocrine therapy after earlier stage breast cancer. Some progressed while on endocrine therapy for metastatic breast cancer. About 40% of the patients in the trial lived longer than 5 years. About 30% made it more than 5 years without having to take any chemotherapy. If they were to post their experiences here, you would have about a hundred responses from women who started out more or less in your shoes and got to keep walking for at least five years. Some of them are still walking…

    There are no guarantees in this world, but there is hope, real hope to grab on to right now…

  • claireinaz
    claireinaz Member Posts: 662

    Hi all, I'm over on the Stage IV boards (for Stage IV only).