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Not dx with stage IV but feel it's coming

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In short, I had a CT scan in August that showed a partially blocked ureter, a slight swollen kidney, bladder wall thickening, slight ascites, and my ovaries were hidden because of bowels but looked suspicious. The CT was to rule out a bump I felt in my upper adoment that my MO thought was nothing. It was nothing. But like the whack a mole game, a bunch of other stuff popped up.

A colonography (done in Sept, in lieu of colonscopy, I also have IBS) showed similar stuff to the above, plus a small amount of fluid around heart. The colongraphy, a type of CT, didn't show anything in the digestive tract, which was done in early Sept. No colon cancer-colon clear, no peritoneum probls.

Had an US to rule out ovary problems 3 weeks ago (all clear), an ECHO to rule out heart last week (Clear: less than 100CC of fluid which apparently they don't worry about-but keep reading).

Got in with Mayo clinic for the urinary tract stuff. I have been having urgency and leaking since early this year, getting worse. Initially told it could be due to bladder wall thickening and inflammation (which carries its own threat of bladder cancer). Asymptomatic otherwise, not pain, no blood in urine. Cytology detected no blood, no cancer cells, but sample was small.

Had a cystoscopy this Monday and an MRI day before. Initially cystoscopy of bladder looked fine, but doc wants to biopsy one place and didn't seem too concerned. I was okay with that.

THEN I read the MRI results yesterday. In total shock:

"Patient has a remote history of a 6 cm right adrenal pheochromocytoma resected in 2007 confined to the adrenal gland, therefore these findings if metastatic could be related to either breast cancer or pheochromocytoma. Cystoscopy today showed suspicious, inflammatory-like mucosal changes in the left posterior bladder wall."

(Something also was reported about an iliac crest lesion too.)

"Findings suspicious for multiorgan infiltrative metastatic disease in the setting of breast cancer. Consider PET/CT for further evaluation."

"Multifocal short segment irregular wall thickening of the distal stomach, ascending colon, proximal transverse colon, and left lower rectum, with nodular omental/peritoneal thickening suspicious for peritoneal carcinomatosis. Small ascites and right pleural effusion."

I.AM.TERRIFIED.

Did I mention I have severe medical PTSD from losing my late husband to cancer in 96-we were married 3 months only plus my own dx, and now my husband's cancer? I've been on meds for 3 years for PTSD, and have been in therapy for three years; it has been helping (till now). I hike, I hot yoga 3-5 times a week, I Pilates, I'm lean and low normal BMI, I eat organic, I don't drink to excess, I meditate, I am usually a fairly happy person, I have a good marriage, and I've been on Aromasin now for 10 years with a year of Tamoxifen and an 18 months of arimidex after that. So nearly 12 years of anti-hormonal therapy (my MO said to stay on aromasin as long as I could tolerate).

I know ILC recurs later, and with 6 + nodes I was high risk. It doesn't help with the abject terror of all this. I know there are no guarantees. I still need reassurance.

The biopsy will be done mid-December, at the same time my husband gets staged for radiation tx. Yes, you read it right: he has cancer, advanced, prostate. Responding well to treatment so far.

I haven't got the CT/PET scan scheduled yet but probably today.

Mayo urology NP tried to hustle me to the Breast Center at Mayo but when they called, they said since they don't have a confirmed dx that it is a recurrence, they aren't sure whether they can order the PET or whether Urology has to.

I've read a bit about bladder recurrence and ILC-it's rare but has a higher rate of return there, and if it does, it seems it's pretty fatal it it recurs there.

The colongraphy, a type of CT, didn't show anything in the digestive tract, which was done in early Sept. No colon cancer.

I came here to helpfully be talked into backing away from the cliff. I'm convinced I'm going to die from this soon, and leave my husband with no caregiver, my daughter with no mother, and I'm not ready to die yet.

My urology NP doesn't have the best comforting way about her; she responds to my inquiries like she's answering a business email, although as part of my PTSD therapy I have a printed slip that every new medical person gets telling them I have to be spoken to in a calm reassuring manner with no fear-based, alarmist language. Everyone but her has been very good about realizing that words can provoke a days-long PTSD attack.

Thanks, sisters.

Comments

  • kaynotrealname
    kaynotrealname Member Posts: 397
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    I think everybody gets this. That you're having to go through it is horribly unfair and just plain awful. I am going through a little struggle myself right now so the terror I know is real. But as far as talking you off a cliff, the only thing I can think of to say is that if it's the worst case scenario does it mean it's over right now? People are living longer and longer with stage 4 breast cancer. And yes you've read something that says metastasis to the bladder is very bad and has a horrible survival rate. How old was that study? Has it been replicated? Not only might it not be the case anymore it might also not have been the case then. What you will do is start another treatment and that the treatment is going to be cutting edge and chances are it will do very well for you.

    And of course everything above is the worst case scenario. Your tests have been contradictory, no one seems to know exactly what they're looking at and once you've had cancer every radiologist likes to support all findings as "suspicious" because imaging is unclear and all benign nodules look like cancer apparently. The simple fact is you feel physically fine so whatever is going on isn't affecting you right now. That's fantastic and something you should lean into. Yes our bodies can make a lot of shit. But medicine can do a ton to kill it and if we feel okay whatever it is we've caught in time to give medicine a chance to work. You're at an awesome hospital and they are working hard to figure this out as soon as possible. Part of the problem, and we all know it, is the waiting. It wreaks havoc. There's no way to mentally sit comfortably with it for so many of us. But after this waiting is over, whatever this is, you will get to the point where you find peace again. Because you'll have a plan to focus on, something to do, a way to attack, and that's hugely important. So know this feeling won't last forever no matter what. Just got to get through this.

  • moderators
    moderators Posts: 8,069
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    @claireinaz We're so very sorry to hear all you're going through. The unknowing can definitely take a toll. Once you have some answers, you should start to feel a little better. Filling those gaps in with "What Ifs" will only make things worse for you. We know it's easier said than done to try and remain positive while you get your answers, but we hope you can try. We're sending big hugs to you!

    If it does turn out to be a metastatic recurrence, as kaynotrealname says, the treatments for metastatic disease get better every day, and more are right around the corner. While not curable, it IS treatable.

    While you schedule your appointments, you might want to ask your doctors about scheduling an FES PET scan (as opposed to traditional FDG PET scan), as an FES PET is better at detecting ILC. This recent podcast might be helpful to you:

    We hope this helps and we are sending all the good vibes to you!

    —The Mods

  • elainetherese
    elainetherese Member Posts: 1,627
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    Claire,

    Lots of stuff shows up on scans that turn out to be nothing. I had my left femoral neck light up on three PET scans, only to find out later that it was a false positive. I'm hoping the same holds true for you. Sending you a big virtual hug.

  • sf-cakes
    sf-cakes Member Posts: 544
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    Hello claireinaz, first let me say I am so sorry you're having to deal with all this. I'll share with you a bit about my experience, feel free to read if you're up for it.

    When I was diagnosed stage 4 MBC, I was my husband's caregiver - he had advanced mesothelioma (cancer around the lining of lungs and heart). I was terrified that I would die before him, but obviously didn't want him to die, either. It was emotionally overwhelming at times, I really wasn't sure I was going to make it. I told my doctors that I couldn't possibly die before my husband! Fortunately, my medical oncologist is calm and reassuring, without giving false hope.

    Once I settled into treatment, I was able to breathe a bit, and as my scans came back "stable" each time (so far), my fear lessened. It didn't go away completely, mind you, but I felt much more stable emotionally. I've been on the same treatment (two oral meds, a monthly shot in the bum, and a 15-minute infusion every 3 months to increase bone density) for almost three years now.

    My beautiful husband died last December, and I was right next to him when he drew his last breath. I am truly grateful that I was able to be healthy and strong enough to be there for him. It gives me some peace.

    Medicine continues to advance, there are treatments available now for MBC that didn't exist 5-10 years ago. If that turns out to be your diagnosis, please join us on the stage 4 threads. I hope you don't have to join us, of course, but we will always be there for you if you need.

  • kotchaj
    kotchaj Member Posts: 211
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    Claireinaz,

    I want to pull you back from the edge of the cliff and also tell you to stay away from Dr. Google, please.

    I've done the same thing when something new was thrown at me. As @kaynotrealname stated, it's not over today if this does become the case. And I know I'm a 3C, not a stage 4. There are so many advancements being made and people are living so much longer with this damn disease every day.

    Although my situation is different than yours, I did want to share it with you. My husband's first wife passed away from cervical cancer after 19 years of marriage. We were married a little over two years ago when I was diagnosed with IDC with mucinous features. My first response was for my husband to have to go through this nightmare AGAIN with me.

    You're doing what is normal in this situation. I want to give you a big hug and remind you that there are so many what-ifs right now. Breathe. Give yourself some grace. Try to maintain some peace as you wait for the next test in December.

  • claireinaz
    claireinaz Member Posts: 680
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    Thank you dear ones. I cried when I read the first three responses, but in a kind of good way. I did ask for an FES scan, Mayo is looking into it to see if insurance will cover. If I had my wish like you, sfcakes, I want to be with my husband if he goes first. I’ve done the widow thing once, in my 30s. I could handle again. I needed the reminder that “everything is cancer” to radiologists once you have had a dx of it . I know there are false positives on PETscans too. I look forward to hearing more, because I still can’t stop trembling and crying or near tears. It’s just part of the trauma attacks I’ve had a lot right now. Since I don’t know what I have, I’d anything, I don’t really know what I’d research, but I do know how to read the science, been doing it for 12 years. Right now I’m traveling which will keep me busy till Monday when I talk with the NP. I’ll check back for more calm words. You’ll guys keep me grounded. I can count on that with bc.org Xxoo

  • irishlove
    irishlove Member Posts: 490
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    @claireinaz Hi dear lady. I hope that you find the support you need here. You sure have a great team to look at everything and receive a proper diagnosis.

    I have a thickened bladder wall, but it is not cancerous. I have a 6 cm cyst on my liver, again not cancerous. The first radiology report stated items that were incorrect. Yes some were correct and I am Stage 4. I started an anti-depressant and it helps me tremendously. PTSD from medical is very real and it certainly has affected me. As someone shared with me when I was first diagnosed Stage 4, once you have a treatment plan some of the fears will subside. Sending positive thoughts and hugs.

  • jrnj
    jrnj Member Posts: 407
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    Claire, I am so sorry to hear this. I have seen your bright smile since I joined and also have ILC the sneaky cancer. I know how hard it is to deal with those feelings and even function. All I can say is I’ve had a few reports I read myself and was completely freaked out and convinced it was cancer and self diagnosed all kind of issues and the Dr was like no you’re fine. There are 2 things I don’t understand. Don’t you have a dr explaining the report to you? Or that you can ask? It sounds like you read it but haven’t discussed with the Dr. Second why are you getting a biopsy in mid December? Why not significantly sooner? I would demand a biopsy sooner. I hope it turns out to be nothing. ❤️❤️

  • claireinaz
    claireinaz Member Posts: 680
    edited November 2023
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    Hi jrnj,

    The biopsy date is the quickest they could get me in. I also have to coordinate with my husbands tx and we have to drive 2.5 hours one way to Mayo Phoenix for each visit. I’m a professor at a university in my last full time semester before I cut back hours and retire in May and have three weeks left that are the busiest three weeks. I read the report in my patient portal… which I never do and it was big mistake. Because my urologist who did the cystoscopy was so relaxed, I thought I was safe to read it when I got home from the procedure. Turns out he hadn’t seen it yet so when he did the cystoscopy, he was pretty chill and didn’t say anything because he hadn’t read the MRI report. I talk with the nurse practitioner on Monday, but she’s not very reassuring. I’ll have to remind her about how to speak to me.

    What I don’t understand is that the ct in August and the colonography in September didn’t indicate any mention of infiltrating disease in peritoneum. My liver, adrenal, and pancreas was fine each time. Each scan shows more things that are new and suspicious and also less things that other scans showed.

    irishlove, I’ve been on Lexapro since June 2020.

    I’m gladI have these boards to come to for some non-alarming words.

  • claireinaz
    claireinaz Member Posts: 680
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    Update: I have a PET on November 22, a CBC panel with CA 27-29 on Friday, and a meeting with the oncologist at Mayo that same day. She is the head of the department and a breast cancer oncologist for years. Still in shock 😱

  • kaynotrealname
    kaynotrealname Member Posts: 397
    edited November 2023
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    Of course you are, Claire. But I'm glad that it's coming up soon. Waiting is it's own hell. Hopefully your news will not be what you fear but once you get it at least you're out of purgatory either way. May the 22nd offer you some hope and something to hang on to. Thinking of you…

  • claireinaz
    claireinaz Member Posts: 680
    edited November 2023
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    Hi all, I’m in this weird place of preparing but yet not preparing. I have some leftover Xanax from a few years ago and am taking it right now but I just feel like some giant hobgoblin is looming over me waiting to finish me off. I have to stay off the stage IV threads. Most talk about de novo Stage IV, younger, having a better prognosis than someone like me who might be stage IV as a recurrence. The discussions are pretty discouraging.

    Considering beginning death cleaning this week. That is how bad my head and spirit is right now. Damn damn damn it.

    I am not finding an invincible summer in me right now. I’m nauseated with fear and close to tears all the time. My husband cried yesterday because he is scared for me and it was awful.

    How does everyone do this? So damn hopeless right now.

  • aprilgirl1
    aprilgirl1 Member Posts: 768
    edited November 2023
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    You are at the most challenging point - the unknown but have enough knowledge to be realistically afraid . I was dx stage IV after 11 years of node negative stage 1 dx and treatment incl surgery , chemo , radiation and 6 years of femara.

    I just had my 4 yr stage IV "cancerversary" and am on first line treatment of Ibrance and Fulvestrant. I honestly feel good , almost great . I work full time as a real estate broker and have been able to travel a lot, despite Covid . There are so many treatments available to us .

    hang in there . Xanax is a good short term option I used while I was "waiting " for the scans to determine my staging .

  • claireinaz
    claireinaz Member Posts: 680
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    Needed to hear that aprilgirl1. Thank you. Xxoo

  • kaynotrealname
    kaynotrealname Member Posts: 397
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    I don't have anything to offer but understanding Claire. I know this is awful. I know you almost wish it was over body wise just so it would be over thinking wise. Our brains can be just as much an enemy as our body. But yes, I personally think it's wise to stay off of stage 4 sites right now. They can be of no benefit to you at the moment because you don't have any answers. All they're going to do is freak you out. As far as your husband goes, I flat out asked mine to stop killing me off. Then he asked me to stop killing myself off. Then we both agreed to stop thinking I was going to die soon. The same goes for you because remember, YOU FEEL FINE. Whatever is going on is not affecting you and that is huge. In the meantime, I'll echo April. Take some xanax. If it doesn't work, ask for some letrozole. In other words don't be afraid to do what you need to do to keep functioning until you have answers. This is a hard time and you need support.

  • claireinaz
    claireinaz Member Posts: 680
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    kaynotrealname. Big love. Xxoo

  • claireinaz
    claireinaz Member Posts: 680
    edited November 2023
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    So talked to the urology NP today via telemed. She intimated that the ureter (something going on in there since end of August, took some time to get to Urology at Mayo, etc.) may actually be some kind of involvement from the abdomen. Or not. The cystoscopy of the bladder didn't look to be typical bladder cancer but I'll have a biopsy of the bladder and ureter, if they can get up there, in Dec to further determine. I'm steeling myself for a recurrence of some kind. She said it was good that there is no blood in my urine or that I'm having any kind of pain whatsoever. She was glad my kidney function on the previous blood test end of July was so good (it was). It was the best she could give me (she's so young), and I'll take it.

    I'm having no pain—anywhere, and the "IBS" that I thought I had (maybe mets instead, of course) is actually better than it was with a hypnotherapy program that my gastroenterologist psych doc recommended. No bloating like before, regurge rare, burping rare, gas rare (compared to two weeks ago-I've been doing this hynotherapy program for about 3 weeks now, called Nerva).

    Anyone have peritoneum mets and have surgery to get them cut out? My liver, pancreas, other vital organs seem to look okay on the MRI but who knows what the PET will reveal tomorrow and what I'll find out from my new oncologist at Mayo on Friday. She's the head of the breast oncology center so that gives me some weirdly grim hope.

    I'll also have a CBC with a CA 27-29 test on Friday and a urinalysis too. Not happy, but coping. Would like some (even if it is "gallows type") humor/encouragement from anyone. It helps to know that as grim as a recurrence would be, our lives don't end immediately after that. Sigh.

    Claire in AZ

  • kaynotrealname
    kaynotrealname Member Posts: 397
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    I'm not stage 4 but I've been reading these kind of sites long enough to know that so many people seem to be doing pretty good for years. In fact it's kind of unusual and sticks out to me when someone doesn't. Especially when the first primary was years before and it was hormone positive. Those seems to be controlled pretty well after a stage 4 diagnosis. Sometimes side effects seem to get to people but I am consistently surprised at the length of time they treat the disease simply as a chronic illness.

  • irishlove
    irishlove Member Posts: 490
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    Claire, saying prayers for your scan, may it be better then expected. Around here we say "in your pocket for scans". Holding you close as you deal with this unexpected scare. I just finally reached the acceptance that I'm not dying today. So onward and upward. P.S> I have had blood in my urine 20 plus years. Urologist does not know why and said he is no longer concerned. Plus I had bladder thickening, not cancerous but from MS.

  • claireinaz
    claireinaz Member Posts: 680
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    Thanks, Irishlove. I am expecting some kind of news about recurrence-just the fact that it was Mayo that did and read the MRI report makes me believe they are pretty expert at seeing what they are seeing.

    Thanks, Kaynot, I expect that I'll get the best tx from Mayo; at least I can trust them to do the right thing. I shudder to think how I would feel if I had to get treated locally.

    From 2012-13 when I had my initial dx to now our local hospital has taken a bad turn downward. They don't have enough staff (because they won't pay them enough for the high cost of living here in my little mountain city), people are sitting in the ER for 8-10 hours before being seen, mistakes are being made with surgeries because they don't have enough staff that are qualified. It's scary. I expect even with a positive PET there will be some need for biopsies, so I continue to row through rapids and just try to read the water in front of me till I can pull over into an eddy and breathe a bit. I'm not there yet.

    Urology wants to biopsy bladder wall and ureter (already scheduled in Dec), and insert a stent if need be, for a few weeks or longer. I may not need it depending on kidney function but they coordinate with oncology for all that anyway. If I need biopsies as part of the PET, I hope they can do them all at the same time.

    I'm scared, holding the oars, gritting my teeth (I was a former river guide: tend to think in river metaphors).

    ClaireinAZ

  • doodler
    doodler Member Posts: 38
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    Hi Claire, I'm so sorry to hear what you're going through.

    Thankfully, so many others have pointed out reason to have a bit of hope, even as awful as this all seems.

    I suspect stage 4 myself, but I'm new to the cancer situation (have had other major health problems in the past but this is a doozy).

    I've had a very recent biopsy with a meeting scheduled with a surgeon Jan. 2… I know it's birad 5, probably in some lymph nodes as well. The reason I suspect that it's spread further: I had a neck MRI done just before the mammogram, for shoulder/arm pain. That came back with a note from a radiologist saying that something looked suspicious in my cervical vertebrae, possibly metastasis, so I'm freaked about about that now… I need to raise that MRI with the surgeon when I see him. But… that could be manageable, could even be nothing?

    So I have no clue which way this is going at the moment, just feeling like I'm in suspended animation, in disbelief half the time. I do take anti-anxiety meds though, and have for some time, so for that I am grateful.

    As my brother likes to say, if you fall down six times, pick yourself up seven times.

  • claireinaz
    claireinaz Member Posts: 680
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    Doodler, I know how you feel. The first scan that implied a recurrence I could handle because scans don't always accurately identify everything. The second time it appeared I began having anxiety and dread. Third scan—MRI—and then when the PET confirmed, that was it. I take Xanax from time to time—a small dose, and take a lot of theanine (can buy at your local Whole Foods or Sprouts-it is a calming amino acid and really works for me. It also has the added benefit of causing tumor cell atrophy-lots of science about this—so I feel good taking it.

    I just started tx this week (Verzenio) and Fulvestrant injection today. I'm working on being very grateful for the meds and thinking that 50 years ago I'd be considered terminal, but now it's considered a chronic disease with the trx we have now for MBCs like me.

    I'm still in suspended animation and disbelief, yet here I am. I feel like I'm in a dream I can't wake from, like you.

    Hang in there; these boards have been mostly helpful if I don't read too much about the awful side effects people report. That scares me more than the dx.

    Claire in AZ

  • bighubs
    bighubs Member Posts: 29
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    Claire, like others have done, I too wanted to offer some words of encouragement. My wife is similar to you, though she was diagnosed de novo Stage IV, lobular, with mets to bones and digestive tract. I suspect she also has some infiltration in her urinary tract as she had some symptoms (incomplete evacuation). The good news is that all of her symptoms have essentially resolved over the last 7 months since she began hormone and targeted therapy (she is on Kisquali not Verzenio). The bone lesions still show up on CT/MRI, but they aren't getting any worse and all other signs/symptoms are improving (anemia resolving, tumors markers continuing to fall, no gastric pain, etc.). Really the only symptoms she has are side effects of the drugs she is on. Typical estrogen deprivation side effects plus the side effects from the CDK 4/6 inhibitor (fatigue, brain fog, joint pain). We haven't been on this path long enough to know how long we'll likely be on it, but at least it's no longer an immediate death sentence, and even in the short time we have been on it, a couple of new drugs have been approved (Oserdu, Truqap) which gives hope that many more will be available in the event of progression. Now more than ever I think medicine is right on the cusp of developing some very effective therapies, if not actually outright cures, for MBC. While there is never a good time to receive such a diagnosis, now is certainly a better time to receive it than a generation ago.

    Merry Christmas to all!

  • claireinaz
    claireinaz Member Posts: 680
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    @bighubs , THANK YOU, that was the best present I could get—your words. I did get a confirmation that my urinary tract problem was indeed the beginning of the spread-pathology confirmed ILC ,er/pr + like the last time, and grade high 1/low 2-but I just started on Verzenio and Fulvestrant now and I agree, more and more developments are happening in the area of treatment, including nanomedicine and antibody science. My urologist believes that when I begin to respond to the medications the urinary tract issues will improve. I have urgency and lack of control right now. Good luck to your wife-caregivers and patients alike, we are some of the bravest people ever. I think we define bravery in many ways.