De Novo Stage IV
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Kbl, I admire your courageous sharing your story with lbca, hopefully this platform will be able to make good changes in early diagnosis. I imagined you with a kind face that comes from a good heart, exactly as your picture is.
I recently reviewed my lifestyle to see what I’ve done wrong ending up here… I thought I had a healthy habit but obviously I must have dropped the ball somehow or ignored signs. But the important thing is that I didn’t know what those signs were and if I knew I never related them to C. I can say lack of information, bad insurance and bad doctors should be equally blamed for, not to mention that health system is more like business than care and insurance is a big issue too.
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kbl - is great you shared your story. It could be all it takes for even just one person to push a little harder for answers.
Snow-drop - don't beat yourself up, or assume you should have known. I was basically symptomless until dx, and I had extensive liver mets. What cancer pain I might have had was mixed in with pain from a motorcycle accident - broken right ribs - and it subsided, so 🤷♀️. I can't definitively say it was pain from my mets. If I'd needed any kind of soft tissue scan (MRI, U/S, CT) for my injuries, I'd have been dx'd 7 months earlier. I was faithfully getting annual mammograms, and I was tracking some occasionally wonky liver enzymes (nothing consistent and nothing shocking). I'm putting it under the shit just happens category.
It's funny, because I was thinking of it today. The one thing that changed sometime after being on treatment was - laughably - I used to have itchy scalp and really itchy tops/sides of my thighs - now, it's completely gone. There's another person here who has talked about itchy thighs with their liver mets. I feel like it almost has to be related, but who the heck would put that together? So...shit happens, and in this case, it sucks.
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snowdrop,
You did nothing wrong! You did not create or cause your bc. I get quite upset when people blame themselves because that is simply not the case. You didn’t drop the ball. Think about it… did all of us do something “wrong” or drop the ball? The answer is a resounding NO! To even think that implies that we can prevent bc by doing things “right”. Healthy habits and lifestyles are good for everyone but to think that these things prevent all disease is simply not true. No one has come up with clear reasons about why people develop bc. Sure, there are theories, risk factors, etc., but you did not create or cause your bc. Now, please be kind to yourself and know that it is not your fault. Take care
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kbl, what a great article! It's so interesting learning more of your story and rather amazing that so many different tests you had over several years failed to uncover the bc.
snow-drop, I think it's normal to reassess one's life trying to uncover the mystery of how/why one got breast cancer. But it is in no way your fault, and I hope you will do your best to dispel the idea.
It seems like breast cancer is almost the only type cancer where some want to place the "blame" on the woman. This is a societal construct falling into the category of "anything less than being perfect as a woman means you brought on your own downfall". Not only are we always supposed to look nice, never be an ounce overweight, never get angry, maintain healthy diet and exercise routine, but we also are expected to put all others before us: husbands, children, parents, etc., before taking care of ourselves.
I never hear anyone say, "so and so got leukemia; probably because they drank wine."...."so and so had a brain tumor but they never ate right, anyway."..."so and so has pancreatic cancer; probably because they never exercised".
There are countless women who've lived clean lives and still gotten bc/mbc. I have three older sisters, none ever had bc. One never had children, was overweight and was a social drinker. One had no health insurance. One is a smoker and lived a very stressful life for years. Some would say any one of those factors might be "to blame" for getting bc, yet they never did and I pray never do. I was diagnosed over ten years ago in my early 50s, denovo mbc. Even if a sister got it now, that's years and years they lived more than I did without it. It's really the luck of the draw, or unluck you might say.
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Thank you all for reading my story.
Snow-drop, I got angry in the beginning because the medical community failed me. After a little while, I let it go. There is nothing I can do to turn back the clock. I ate healthier and exercised before cancer, and now I eat whatever I want because I don’t feel it makes a difference, and I want to enjoy what time I have left. Please don’t feel you caused your cancer. I don’t think it had anything to do with my lifestyle because my older brother got ductal breast cancer and is stage IIIB.
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kbl, I love your concern for others in sharing your story. You have given a precious gift. Thank you.
It’s hard to know when we should act on our vigilance for BC, even when we KNOW it’s coming and we know the signs. With my family history, I knew all the signs from my Mom, aunts and my younger sister. I did annual mammograms, ultrasounds and had biopsies. I did everything I could to help my doctors find the BC early. That failed. It failed because a biopsy in 2016 didn’t get a good sample, came back negative and the implanted marker clip made medical professionals discount the dark area on the ultrasound for 3 years. 3 years! Mammograms were always clean and the doctors ignored the ultrasound because “we already checked that area and it’s OK.”
We place our trust in medical professionals, but they are human and we all make mistakes. I’ve made peace with that, but I want doctors to learn from this experience so that someone else can be diagnosed at Stage 1 and not 3 or 4.
Lobular cancer is hard to find. We need better diagnostic techniques urgently. I know there is a lot of work on new imaging, but it is taking a long time for those techniques to become widely available
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Cyathea, I’m so sorry you also had a delayed diagnosis and that you’ve had multiple family members with it.I wonder how we can get this information out there even more than we do now. I fear for my daughter, as she also has a chek2 gene I do not have. It’s making me think maybe I can advocate more than I do now. I’m going to see what else I can do.
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Someone else was beating themselves up on another thread for recent progression thinking it was due to getting lax on an extremely restrictive diet. I mean, sure, some folks like to go that direction for a sense of control but I was walking hours every day/swimming three times a week and eating fairly well with limited drinking before diagnosis and here we are. I beat myself up for a bit and then let it go - the stress wasn't worth expending my limited time/energy on.
There is more to all this than just diet and exercise, a lot of it simply comes down to really bad luck, or a series of bad decisions/situations/genetics that all lined up perfectly to = de novo Stage IV. Its effectively the Swiss cheese model of systems failure, only we are the unfortunate lot to be in the % failure bucket.
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Good post Sondra! I remember a member several years ago who was beating herself up for eating 10 potato chips! If compulsive/restrictive diets, regimens and protocols cured cancer and halted progression with verifiable and easily duplicated results, I'd be on board but I have yet to see that happen. Yes, we should maintain healthy habits but most of us know that it guarantees nothing.
I have lived 11 progression free years with mbc. My diet is balanced with more of a focus on plant based foods but I am not vegetarian or vegan. I probably eat a bit more sugar than I should and I can't function without my two cups of morning coffee. Am I claiming that this casual approach, no stress or guilt over what I consume, is responsible for my “health"? Nope and neither can those who go on restrictive/compulsive diets. I truly do wish we knew why I have done well. I'm going with good fortune and other factors that are currently unknown.
PS: I did forget to mention that I had my annual PET on 8/17/22. I remain NEAD
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snowdrop: and everyone else seeking a cause and assigning blame to oneself. I did that too. Maybe I shouldn't have had a martini or two on Sundays. Maybe I should have exercised more. Did I miss a subtle sign? I had clear mammograms and no history of BC in my family. I had some things that were out of my control. I started my period early (11) and hit menopause late (56) I have dense breasts. I had no children. I have NF1. Yeah -- all of those were risks. But maybe it was just drawing the short straw.
I won't/can't do some restrictive diet. Would it add a few more years or just make the remaining years seem longer?
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I agree with all of the above! So many "how'd this happen?s" we all have recently on these threads. I'm confused where I read what, but that question is always there.
Sondraf. 🤣 everything about my cancer (other that the actual cancer- thank goodness for that since there is treatment) is below 5%!!! Perfect recipe, I just don't know the ingredients.
Elderberry, 12.5 monarch, 51 menopause, breast fed 5.5 years total, my job IS excersise, regular mammograms, no genes, no family history, loads of vegis occasionally some fish...yeah, wine, college fun, dense breasts, stress...
So many maybes, no answers. I participate in studies whenever asked so maybe somone in future can benefit. We all gain from previous generation's knowledge.Yay on NEAD exbrnxgrl.
I tried to respond earlier including other's, but it glitches. Hi to all
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Thanks, dancemom!
Why do so many of us believe that we should have been able to control our lives in such a way that we wouldn’t get bc? If that were truly possible,wouldn’t there be more of us who were successful at it?I will be honest and say that I never questioned or wondered about why I developed bc (beyond genetic worries for my children) . I think I have always known that bad stuff sometimes happens and there is an awful lot in life that we have no control over. As many of you have probably figured out, I am not too concerned about controlling everything in my life. Too stressful for me.
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Let me add my two cents. I used to be sort of a health nut. I did not eat most carbs, I woke up at 5:30 am to go swimming at the YMCA before work, lunchtime I'd go back and do some other exercises.
I had been seeing a general surgeon for many years who aspirated tumors in my left breast that popped often during the years. The last time I saw him, he dismissed a lump that I was concerned about. I missed a one year mammogram, and boom, Stage 4. I was referred to a new breast cancer surgeon with a single mastectomy, lymph node removal, radiation and chemo.
I wasn't given long to live, so I said what the heck - I want cake and ice cream and sweets, and stopped exercising for the most part.
Looking to see where the cancer came from is fruitless. I passed all the questionnaires, asked if my first surgeon could have done more, and did I ingest or breathe some kind of carcinogen. I can only go forward and live my life in the present. Still eating cake, ice cream and sweets.
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amontro,
I agree that trying to find what caused our bc is fruitless. I know it is important for some folks, but I just always felt that it was simple bad luck. For me, there was no point in spending any time figuring out why/how it happened. I have had all genetic testing available and am negative for any known mutations so am not worried about my family (on a genetic level!).
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Hi Everyone. I'm new here but have read regularly since my diagnosis in 2020. I was in complete shock when I was first diagnosed. I wasn't aware of anyone in my family having cancer, I ate healthy, organic, danced since I was 8, barely drank....I remember getting a genetic test (all test for 40+ mutations came out negative) and while the genetic counselor was talking I blurted out "You mean it's just crappy luck??" She nodded slowly and said "I'm sorry but yes."
I remember getting my first scan and having a panic attack when I realized that I/F was working. I was feeling so much better than before diagnosis (I have extensive bone mets), I was in a bit of denial. But here was proof that the diagnosis was real. Thankfully, I've figured out ways to keep going with hope and peace of mind. Talking to someone has been lifeline and yes, meds when I need it (I was initially resistant to this but it has helped tremendously), and of course, reading these threads. Wishing everyone a serene and uneventful rest of the summer.
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smallmoments,
So many of us have done things, in terms of diet and lifestyle, that we believed would protect us. It made us feel like we had control over this which feels a lot better than thinking we have no control. The truth is that our control is not only limited, but not well understood. Why some struggle mightily from day one to those who go for years without progression continues to be a mystery.
My younger sister was dx'ed with a uterine sarcoma at age 50. She passed away about 6 months after her dx, having lived an ultra clean lifestyle since before that was even a thing. It really does feel like simple bad luck.
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smallmoments, thank you so much for introducing yourself. I totally understand the no genetics mystery. There has got to be something in my family they’re missing because my oldest brother was diagnosed with breast cancer almost two years ago. His was Stage IIIB, and this one found the lump and didn’t hesitate to do what he needed to get rid of it. He has ductal while I have lobular. My second oldest brother got diagnosed with renal cell carcinoma right before my older brother, and he passed three months later. To go from just one out of five to three out of five with cancer in a matter of months was startling to me.
Can I ask if you have lobular or ductal?
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Hello Beautiful ladies. It's been a while since checking in. Just received KBL private message in a news feeds, which was over a month ago. Wow. What in the world happened to this website? Seems redesigned. Oh well, I hope everyone is doing well. It would take me a while to go back and read this thread. My time remains limited, on the go taking care of my dad, running back and forth daily to his home, for he is receiving chemotherapy for pancreatic cancer. Watching a loved one suffer is way worse than what I'm dealing with presently.
Regarding treatment, I remain stable on the ibrance/letrozole/xgeva/zoladex combination. Hope everyone is responding well to treatment. There is a lot going on as far clinical trials, new medications approved for MBC per my MO. MO describes this as an exciting time for MBC, cancer in general. I applaud my MO's enthusiasm, but lives are being lost daily, science can't come quick enough.
My bad for not reaching out for several months. I care about all of you, but life has got in the way, a lot going on with being a caregiver for my dad. Take Care. Tink
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Tinkerbell hi, great to see your post and you are stable. and yes you are right about seeing your loved one suffering is way difficult.
I have bone scan tomorrow, and my anxiety is high
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Snowdrop: It’s good to hear from you. Good luck tomorrow on your bone scan. I never had a bone scan; every 5-6 months FDG Pet/ct scan. Are you still on the same medications as me? I get fatigued but somehow keep going. Don’t really have a choice right now. Keep us posted on your bone scan.
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Thank you for taking the time, Tinkerbell, and letting everyone know you're doing okay. I'm so sorry for your dad. I'm sending you a big hug.
Snow-drop, I'll borrow a phrase from Mel's Living Room and let you know I'll be in your pocket - meaning I'm standing with you in spirit - as you have your scan. Please let us know how it goes.
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kbl, thank you so much I will take the kindness of yours with me. I am in the waiting between injection and scan.
Tinkerbell, results will be out next week, I guess. Thanks for your wishes.
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Hugs while you wait, Snow-drop. It’s the hardest part.
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Snow-drop, hope your waiting is going ok. Tinkered, thanks for sharing your MO's enthusiasm. It helps to see the big picture.
I am that weird stage IV who got every treatment. Day 19 of Ibrance today (I now stop at 18 and take 10 days off) and I am really tired. And work hasn't even started yet. My fall schedule starts Tuesday. I have Diep reconstruction surgery schedueld for fall, but of course, scans first. Had another "inflation" to my tissue expander yesterday and its really sore. I haven't told work yet, because now I know how quickly things can change. But I really need to plan on coverage for the 3 months I'll need. Its just too much going on: PT still (because of course I injured my "good" shoulder while dealing with mastectomy side). Scans, TE inflation, PCP checkup, PlasticS checkup, monthly MO, mammo on the side I still have, Only 10 appointments scheduled for this month, haha. But I need to get my youngest to dentist and checkup too, oops. And oldest is finally getting the other wisdom teeth out in the midst (was scheduled for March 2020...)
I planned to work lightly this summer and get ready for surgery - regain some strength lost from both surgery, and also from just not being active anymore since covid. Organize my papers. Clear out old computers. Get rid of unnecessary kids' things. Hopefully clean up the disaster that is my home. Instead, things keep piling on. A member of the team on my summer project had an accident required two seperate surgeries, so I stepped into his much more involved, time/energy consuming role. Our family business is always stressful. Children stuff. And then
I Suddenly became "in charge of", (POA is definite in one case) for not one but TWO elderly relatives, one 1/2 way across the country last week. Trying to straighten out their affairs mostly remotely to get long term care happening. Uncle had a stroke. Found 2 days later by concerned neighbors who hadn't seen him, under a fallen shelf that had files and files and files, paperwork all over him. They found my number in his phone. I visited and spent 3 days trying to literally dig out anything important, and meetings and meetings. Then closer to home, did more digging through old boxes for anything that could be important for aunt he is POA for. Guess where those piles of papers are now.
I guess I've hit middle age! Caregiver on all sides. But now I need a nap, lol!
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DanceMom, I’m exhausted just reading what you’re going through. I’m so sorry you have so much on your plate. I can’t even begin to imagine doing what you’re doing. I’m lucky I get out of my pajamas some days. I’m also sorry about your relatives and the added stress that’s bringing for you.
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thanks kbl. Sometimes it helps just to write it all out. Hearing a validation makes it ok. We all have s*** to deal with of all kinds.
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KBL: Thanks for keeping the De Novo group going. Love your beautiful nature and caring for us.
Snowdrop: I’m sure your anxious. Hope you receive favorable results soon.
Dancemom: I know the feeling. Some days I don’t know if I should wind my head or scratch my watch.
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Somehow I lost touch with this group. I am 20 years and 9 months at Stage 4 MBC de novo. Currently on Xeloda and Herceptin. Hanging in here and watned to say HI to everyone.
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Tinkerbell, I'm so glad to be here and that I started this page. I get as much from you all. It's so nice to feel surrounded by the love and not feel so alone.
Denny123, wow, I'm so glad you've been here almost 21 years. What hope you give to others.
Right now I'm on Xeloda and Faslodex. Love that Xeloda has worked so long for you. Thank you.
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KBL - thanks for bumping the thread to keep it active.
Snowdrop - hanging out in your pocket while waiting for scan results.
Dancemom - I can't remember, are you oligometastic? Your day-to-day life is just exhausting to read about it.
Denny - I know our profiles are messed up. Are you now HER2+ or HER2 low? The Herceptin and or Perjeta seem to be making such a tremendous difference for that tumor profile. Congratulations on your continued success. It gives us all hope.
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