Unfortunately it appears I am back.
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Thank you mods. I had that run, and it came back with a Pik3 mutation. Can somebody tell me if that’s bad? I’m pretty overwhelmed.
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Kbl actually they told me they wouldn’t do anything with the guardant results except to know what they’d do next after the Fas/Verz failed. Does that sound right? They didn’t even want to run the Guardant. It was done elsewhere.
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New MO who said the PET was underestimating my Mets was right. Sadly. Had bone scan to see if it was better way to follow my ILC and it was, apparently. I can see results on my portal and it basically says it’s everywhere. Skull, ribs, vert, sacrum, femur joint area. I’m devastated and so scared. And I’m worried it’s moving fast. Three weeks ago nothing hurt. At all. Now I hurt everywhere. Does having “widespread osseous disease” mean I’m going to die soon? Like is it out of control?
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I can certainly understand you being scared and feeling devastated, but try not to despair. From what I can tell, and I think @kbl is a good example of this, having it widespread in your skeleton is not a good proxy for your prognosis. KBL believes she has had it in her bones as far back possibly as 2013 when she became symptomatic, but that the diagnosis was missed (and hence she was receiving no treatment for it) until it spread to her GI tract in 2019. Previous MRIs had seen something in her bones, but a biopsy missed it. So she presumably lived 6 years with it in her bones while receiving no treatment whatsoever. Her experience may not be yours, but I think if you look in the bone only mets forum, you'll see plenty of folks with it throughout their bones who still are outliving others, and what you'll also likely notice is that most of them, if not all of them, have ILC. While ILC is sneakier than IDC, it also seems to be much slower growing than IDC and is almost always ER/PR+ which makes it respond well to systemic hormone therapy. I hope that helps reassure you some on an otherwise stressful morning.
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@kmom57 @bighubs stated my case to a tee. I had it such a long time with no treatment. It’s everywhere with my bones and bone marrow as well, and I’m still here almost 11 years later, even with it in my stomach. I know how scary it is. I’m really glad you have imaging that works. This way you can see if the meds you’re on work for you. I am here any time you have questions.
Thank you, @bighubs.0 -
Kmom57: "My initial cancer was missed for several years even though I was doing routine breast mri. They blew off the spot that was very clearly there two years before. When I saw the two images side by side (2017 and 2019 mri) even my completely untrained eye could see the spot in 2017 and that there was a distinct difference between it and everything else. I leaned over (in 2019 when I was diagnosed) and touched the 2017 screen and said “is that not it?” “Ummm……ummm…..yes it probably is. In retrospect should we have biopsied that? Probably.” This imaging thing has literally killed me…..I’m not going to let it take me any sooner than I have to. Anybody have any ideas where to go?"
I am SO sick of iatrogenic harm. I can be generous & grateful for healthcare researchers, diagnosticians, pathologists, & practitioners doing the best they can and making mistakes.
But I am SO sick and tired of the endless interpersonal shaming I have experienced since childhood—as someone with severe Ehlers Danlos that they never understood—and now w/ a second primary cancer, and ROUTINELY doing more research than my doctors, questioning or pointing something out, being dismissed, and then being right. And being shamed for THAT. When they screw up with MY HEALTH, I'm supposed to be ashamed of that too. Uppity woman. How dare you question us? It's truly like an abusive childhood where you're dependent upon authority figures for life and death (now health & pain control) whose egos are so important that when they mess up, you are considered responsible for it and must pretend that somehow you caused it—all to save their image.We must always perform Obedient Female Patienthood. I've had several experiences where it was clear the LEADING priority in the room was PHYSICIAN AUTHORITY AND STATUS. My health is tertiary. Assauging their egos, minimizing ourselves, trying not to cause trouble, apologizing for our bodies and hoping that they "get it right," b/c just as bad as their misdiagnosis is having to deal with them trying to reinforce their status knowing that we know they messed up. That means any emotional response, any other symptom or "failure" (eg, how much do you exercise?), anything can be used as the repository of blame for their misdiagnosis. If you hadn't questioned them so much, they wouldn't have been distracted. Well, you obviously didn't prep properly for the test they took—how could they know? ANYthing to preserve the status. And nurses are recruited as flying monkeys to blame the female patients—including for following instructions they were told by the last nurse in the room.
I cannot believe in 2024 that so many people—including female drs & nurses who should know better but get temporary status otherwise—get away with shaming, invalidating, belittling, dismissing female patients and only aggravate our healthcare problems from menopause, societal devaluation for aging, and societal discrimination that's much worse for women from poor, underrepresented groups.
All it'd take is to be our collaborator, our partner—and never to rush. You can BE WRONG. But treat us as equals. Defending your status detracts from actual healthcare. There is so much money thrown at "studies" aimed at enforcing questionable drug regmines pushed on women, that could instead hire many more health staff to slow down the burden on even the humblest, best oncologists who end up rushing through giant patient loads. At least the Cancer Center I've experienced seems designed to cause more emotional harm & medical neglect. It is incessant.
God bless you—I'm glad you're identifying better resources for you and I thank you for sharing this.2 -
Update, though not a happy one…..
Was prescribed Faslodex and Kisqali on Tuesday, though I’ve been unable as of yet to get VA pharmacy to fill the Kisqali. It’s “going through the process.” Had more MRI yesterday, and the result on my portal says there’s hazy irregular lesions involving the spinal cord at C7, possible leptomeningeal carcinoma vs artifact. I suspect it’s not artifact as I’ve been saying for two weeks that I feel physically like I’m dying, and quick. I hope to God I’m wrong because I don’t have my daughter set up yet to be as ok as she’s going to be able to be. Can’t get in to MDA…..even the latest mri and the prognosis without treatment which indicates I might not make it until my july appointment isn’t enough to get an earlier appointment.
The thing is this……none of this needed to happen. None of it. I’m putting this out there not to complain and “poor me” or for sympathy. I’m putting it out there so that if anybody in the future is reading it, and is in the position to make a difference in treatment, particularly of women, they will know the reality and the consequences of dismissing people as “just anxious.”
Not only was my diagnosis missed in 2017, I started many months before my Oct 2019 diagnosis saying something is wrong. I specifically said something is wrong on my left side (my cancer was ultimately discovered in my left breast). A male doctor (not VA) told me as I was trying to describe all my odd symptoms, “I have other people to see, I need to examine you and move on.” He wrote it off as anxiety. The VA sent me to mental health and assumed it was anxiety related to my 9/11 PTSD diagnosis. I kept trying to tell them I wasn’t making it up. They diagnosed me with a “somatic” disorder, basically hypochondria. They even convinced me it was just my anxiety. Only it wasn’t, it was cancer. I didn’t know what it was but I knew my body and I knew something was wrong.
In about Feb of 2019, a female doctor (not VA) told me “are you anxious? Yes but I think it’s because you know something is wrong and nobody is listening.” She, unfortunately, very suddenly parted ways with the clinic before we tracked down what was wrong.
In Oct 2019, I found a lump. Myself. On the left side just as I’d been saying. I did all the treatments. Surgeries. Took my letrozole every day without ever missing a dose. After the initial treatment, I was treated/followed at a local clinic and an NCIC cancer hospital. The local clinic as it turns out was head and shoulders above the big hospital, and would have caught this had I stayed with them. The big hospital does NO routine labs for follow up, even though I was Stage 3 at diagnosis with 8/11 lymph nodes. Not even a CBC or Chem 20, much less tumor markers. They do not image either unless you come to them with symptoms. They check your scar line and your lymph nodes, basic physical and that’s it. I did tell them every visit starting a couple years ago that there were two spots on my back that felt bruised when I would lean back in a chair. They would bang on my back and ask does that hurt, then send me on my way. I know now that those spots are where T6 and T11 would be, which is where I now have the most cancer and a fracture in T6.I moved my treatment to another NCIC center with a doctor i trusted. In July of last year I went to him about rising tumor markers (done at my local clinic) and was told don’t worry about it. He did CT for restaging, declared it clear, his nurse and I cried with relief. He showed me the actual CT images and I asked about the things that had lit up on my CT on my back and asked how do you know that isn’t cancer. He says because it’s on the edges not in the middle. Said it was arthritis. Said we’d rescan in six months but not because of anything on that CT. There was nothing of concern.
Six months later, another CT. This one showed a fracture in T6 and a shadow that might be cancer or might not. I asked how concerned are you. He said “in a less anxious patient, I’d wait and rescan in six months, but I’ll do an mri if you want.” I said I want an mri. THAT showed widespread osseous disease over my whole spine. A bone scan then showed it everywhere, skull, vert, iliac, sacrum. Now potentially leptomeningeal carcinoma. Which if true, as I understand it, means I’m likely not even going to have time to get my daughter a car she will need, to buy her the gifts I wanted to put away for future Christmases, to make the videos I wanted to leave with her, the cards, the letters. I’m likely not going to put up a tree with her this Christmas. Can’t get through the junk in storage to keep her from having to do it. Won’t see her dance again. She’s 16. Alone in the world other than me. And I could have been here longer with her and for her if somebody would have just listened. But I was “anxious.” Overreactive. Not mentally ok. Yes, I was all those things. Because I knew my body. And nobody would believe me.2 -
kmom57-
I am so sad reading your post. We must advocate. What hospitals you are by and how overworked they are. I hope something good happens for you today. Your beautiful 16-year-old daughter needs you. Every single bit of your frustration and anxiety is understandable. Unforgivable to those who did not listen. Please do not give up. So many on this forum say there is hope.❤️
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@kmom57, after 2 years of feeling ghastly and having another issue (not cancer related) raise its head, I was diagnosed de novo stage iv with "innumerable" sclerotic mets to my bones. I am on kisqali/letrozole and, so far, appear to be responding - slowly, step by step my tumour markers decreased and the first set of scans showed some regression and I feel better than I have in years. My point is that treatment can and does help - hold your nerve as hard as that might be and know that you have support on these boards and can vent all you like - no judgement here. There is a wealth of experience and resources here that might also help you. In your pocket with good thoughts.
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@kmom57 There are so many of us who were not listened to because if it doesn’t show on scans, it’s not cancer, if we know our bodies but they keep dismissing it, it’s all in our heads. I am sick to death of this happening to those of us with lobular, and I would love to scream it from the rooftops. I had a friend who was worried about it spreading to her stomach, which is where mine are, along with all bone and bone marrow, and when they finally did an endoscopy at the hospital because she had to have a blood transfusion due to low hemoglobin, after they took biopsies only because they had to because she had erosion, the doctor came in, not the gastro, a regular doctor, and when she said she was scared it was lobular, he turned around and laughed at her and told her it definitely was not because there were no tumors. Of no consolation to her, it was lobular in her stomach, and nothing will happen to that monster. I’m saying this to let you know, as I’m sure you do, that you are not alone. I don’t know how to help with getting doctors to listen and not discount women who know their own bodies.
Are you going to have a spinal tap to ensure that’s what is happening? There is a Leptomenengeal Facebook group that you could join. It’s not solely breast cancer, but maybe you could get some information. I hope with all my heart that it’s not lepto.
I’m so sorry that those who took an oath to take care of you failed so miserably to help you. I’m sorry that you are having to go through this hell when you have a young daughter. I’m angry for you, as I am for my friend and all of us who have been dismissed by horrible doctors. It’s just not right.
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@malleemiss251 @katg @kbl I don’t have the mental energy to respond individually but wanted to thank you all for the encouragement and love. Yes I was told that they don’t diagnose lepto without a spinal tap, but not to give up yet. They first want to repeat the MRI, and do brain too. My MO tells me she will be shocked if either show anything, as it’s generally a more late stage diagnosis in highly ER+ BC. My RO seems skeptical too. They are hopeful it’s artifact.
I appreciated their encouragement but honestly it doesn’t make me feel much more hopeful as I’ve been nothing but an “over-achiever” in this whole journey, surprising everybody with the size of my initial tumor, the nodal spread, now the wide spread nature of the bone involvement coming out of almost nowhere. I am having constant headaches and head pressure too. I’m trying not to give up, I can’t believe I’m here in this place. I never would have dreamed it.Edited.
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I go to MDA as well. I recommend MDA. My general assumption is that if anyone in the cancer medical field can tell you what is going on, it would be them. Keep calling them every week. See if anything opens up.
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I have been waiting to post this update until I could see the neuro-oncologist. I had a repeat spine MRI on the hazy spot that was concerning for Lepto. I have been irrationally afraid to say anything at all for fear that the other shoe would drop, and I’d find out that the imaging yet again was wrong, or misread (some imaging PTSD I think). I’m still afraid to say the words or to believe it. But I really feel I need to update all of you who have been so supportive, as well as anybody looking for hope on something similar in the future.
I have been told by MO, RO and finally neuro, that the spot of concern resolved on repeat mri. It was artifact. I saw the imaging myself today, side by side, and the neuro assures me it was nothing. And that there’s no brain involvement either.
My immediate issue now is potential cord compression which we are working through. I am still scared, and still overwhelmed and worried about whether this treatment will work or not, but I feel really confident in the team of doctors I’m working with, who have without exception been wonderful, and who talk to me like an intelligent woman with a brain. So things are looking up a bit. Thank you again for all your support.
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That is amazing news to hear that it is not lepto, and that there is no brain involvement either, @kmom57! You must be deeply relieved.
The cord compression is still a lot to deal with, so understandable that you're still feeling scared, worried and overwhelmed though. I don't know if this would be something you might be interested in, but we have free weekly meet-ups that we host over Zoom on Mondays at 2pm EDT, Tuesdays at 8:30pm EDT and Wednesdays at 4pm EDT. Quite a few women from the discussion boards attend, and it's a really nice way to get additional emotional support for what you are going through. And it can be a nice resource for information!
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@kmom57 I can totally empathize with imaging fatigue and worry, as it is just not great for those of us with lobular. I’m so glad it was artifact and that your fears have eased, even if just a little bit, and I’m very happy you trust your doctors. That’s so important. I would be taking a big sigh of relief and trying to give myself a break at this point and maybe do something fun to get my mind off what just happened, even for a day. As far as the possible cord compression, I hope they can come up with something to help relieve that. I know it’s hard to take in, as being told something so devastating and then being told it was a mistake is very scary to believe. I am thinking of you, and thank you for the update. Sending hugs. 🤗
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Sending you hugs too-kmom57
Take some deep breaths. You had some good news and just know that the doctors will find a treatment that will help. Please follow the moderator's suggestion and join the forums for support. Having people beside you, even virtually is to know that we are real with real experiences. I am at the City of Hope in Duarte California. Large hospitals vary treatments, but they do go beyond their own experience to find treatments worldwide.
I have not had what you have, but I am going to look it up to understand.
Treat yourself with loving kindness.
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Breathing a sigh of relief with you, kmom57. And of course you are scared and overwhelmed and as they say often on these boards, I would give you a gentle hug.
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Thinking of you @kmom57. So good that it is not lepto. It is a good news start to my day. I am so glad that people share their good news. I am hoping they can resolve the cord compression quickly for you. I fully get the "waiting for the other shoe to drop" and not saying anything for fear of jinxing outcome. I think most people who have not experienced cancer do not get that it is not just the physical challenges - it can do some fairly ghastly mental stuff as well. One step at a time.❤️
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I’m going to move over into the forums more specific to my individual treatment issues, but wanted first to update here.
I’m in Cycle 3 of Kisqali/Faslodex. Sometimes I think it’s working and sometimes I feel it’s not. My tumor markers are jumping around, so MO says there’s “no trend” yet. 15-3 is still high, CEA still normal. After the first cycle, things that were hurting before had stopped hurting, and MO was pleased. Now in the past three weeks I’ve developed pain in a place I’ve never had pain before (over a muscle and a rib so who knows which it is).
Will have my next scans in a couple weeks so I guess we will know something then, although I asked my MO if the bone scan doesn’t show well any lytic lesions (as stated on report from last scan) and there are likely a lot more than we could see, won’t it look on next bone scan like i have more lesions since presumably some will be going sclerotic as the treatment works? MO says yes, often, in the first scans the radiologist will say there are new lesions on bone when in fact, it’s lesions that were always there but didn’t light up before. A little nerve wracking not knowing. Especially since I know imaging isn’t very reliable on me. I do know that a very large lesion on my spine that has been MRI’d in April before treatment and again in July showed no change at all, surprising the neuro surgeon who evaluated it. So maybe that’s a good thing?
As for the potential spinal compression, neuro surgeon decided radiation was best manner of treatment as its causing no sx and doesn’t appear to be compressing cord…just touching it. I’m halfway through radiation on that. Tolerating all the treatments pretty well. Except Didn’t have any pain at all in my back before radiation. Now I do. Go figure. RO says there’s sometimes flare pain as the cells die, and it isn’t permanent. I can handle that.
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