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I made a BIG mistake and it's too late.

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  • 2019whatayear
    2019whatayear Member Posts: 468
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    Oh okay so they found no primary tumor-

    I Hope you get more answers GreekMomma you should have a better picture of what all is going on.

  • 1greekmomma
    1greekmomma Member Posts: 6
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    Hi bigmistake,

    Just the nodes. I had a few enlarged, but only only one without a hilum so they biopsied that one.

    I'm sorry you are going through this. What a rock and hard place, huh?

    For what it's worth, there are women who throw every treatment at it and still get recurrences/mets, and there are others who have had to quit treatment due to severe chemo side effects and they are doing fine years out from their diagnoses. There is just no guarantee, and I hope you find peace with whatever treatment you end up with.

  • 1greekmomma
    1greekmomma Member Posts: 6
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    2019whatayear,

    Initially, no. It was/is palpable (feels more like a ropey fibroid than a definitive lump) but did not appear on mammo or US. MRI done a few weeks later caught it. That's why I am leaning to it being ILC. It is also located on the very outer edge of the breast where the lobes are located (has not invaded skin or chest wall, but is right next to both. So close that they initially thought I had bone mets in the ribs but it was just the tumor sitting so close).

    If I survive this (and it is my prayer that I do, obviously), it will be nothing short of a miracle. Every delay and mishap that could have happened DID happen. I am still amazed at no signs of mets seeing as it took almost 7-8 months from reporting the lump to finally getting a diagnosis!

  • eric9909
    eric9909 Member Posts: 4
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    GreekMomma wow! Mines in my outer quadrant too, odds are you may also be another rare ILC-er. Initially I thought it was a “good” thing I had gotten the rarer type of breast cancer but now I couldn’t feel worse about it. sometimes I feel I may already have mets, I’ve noticed changes within me that I had attributed to incoming menopause but that are also signs of when ILC goes to the pelvic areas. Worst part? If and when I demand scans they’ll probably show nothing. I don’t know how to feel lately I thought I had cancer handled and I’m realizing I never did. I agree with you that it’s just a crap shoot.

  • eric9909
    eric9909 Member Posts: 4
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    bigmistake please private message

  • ShyViolet
    ShyViolet Member Posts: 5
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    Hi BigMistake, I just wanted to pipe in about getting scans. I have no idea what the norm is, I'm very new to this. I was Diagnosed Dec 28th I believe, my biopsy results came back with IDC 2cm. I had my consult with the surgeon 2 weeks later and the plan was to do a double mastectomy and chemo. I saw my oncologist for the first time 2 weeks after that and in those 2 weeks I was sent for a CT and Bone Scan. So to my huge shock when I went to my first Onco appt I was told that my cancer had metastasized to several bones. Complete change of plans and my surgery and chemo was cancelled and I'm now on ovary suppression and an AI. I don't want to scare you, I know you are going through a huge amount of stress and anxiety right now and I don't know how common this is to happen. But I would at least want scans for peace of mind. If we hadn't done those scans we wouldn't know my cancer had already spread. It's all a blur so I can't remember for sure who called for the scans but I think it was the family doctor I was seeing at the breast cancer clinic. My mom recently passed away and my sister and I were seeing the breast cancer clinic for preventative measures and this was my first routine mammogram. I'm also BRCA2 which puts me at higher risk but we were still all so shocked that this happened so suddenly. I just turned 38.

    Scared

  • johnsmom68
    johnsmom68 Member Posts: 10
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    Hi 1Greekmomma,

    I regret chemo because it didn't help me. That doesn't mean it won't help you. Taxol was not as hard for me as AC. I think you need more details before you decide to skip Taxol. I would ask what type of cancer you have. Ask why this regimen? I went to UNC-Chapel Hill for part of my care. They had an amazing nurse navigator. If your hospital has one get know that person. They can help answer questions. Mine even helped me get an appointment sooner.

    I know ca 15 isn't the be all end all test but I would love for my tumor marker to be 12 like yours. That sounds promising. Sorry you even have this to worry about. You deserve answers about your disease so you can make informed decisions.


  • 1greekmomma
    1greekmomma Member Posts: 6
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    Johnsmom68,

    I see. Yes, I would feel the exact same way, going through 6 months of chemo only to have it metastasize later on.

    I think that taxanes are now just "the standard" if you are node positive, and have an advantage in TN/Her2+ cancers. There's a mixed bag of studies when it comes to taxanes and ER+ cancers though. And if, as you said, some countries don't treat ILC with chemo at all, that makes it even worse!

    I wish I were in a larger city so I would have more options. I go to a cancer center that works in conjunction with the local hospital, and does trials with MD Anderson. I think they are ticked at me for asking questions though. I brought up fatal reactions with taxanes with my onc, who dismissed them as happening "maybe in the 90s" (of course I have found studies that show, albeit rare, that they do happen, and not just "in the 90s"). I know doctors hate when patients go to Google, but doctors don't know everything either, and my onc is a general onc, not a BC specialist. I think that would make a huge difference. I don't want "the standard", I want what will work for ME. I don't think that is unreasonable for anyone to want.

    I think you said you were put on hormone/ovarian suppressants during treatment? I was not. So here I am with an ER+ BC with no ovarian suppression at all. No chemopause. Period on time like clockwork.

    After reading all the posts, and the different treatment options out there, I feel like I'm in the stone age when it comes to mine! Gah!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,051
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    Ladies,

    I don’t mean to intrude but wanted to comment on scans, relative to shyviolet’s post. Roughly 6% of bc diagnoses are de novo stage IV. I do not have a figure for how many of those were asymptotic or briefly thought to be lower stage but it clearly less than 6%. So, a situation such as yours is not common. It might seem so because we have all read of similar experiences here on bco but we are a group of people who already have breast cancer and are having problems in many cases. It doesn’t make sense medically or financially, particularly in the US, to spend thousands (a PET is about 5 grand) and expose patients to more radiation just to look for a unicorn.

    Lest you think I am unsympathetic or grumpy, my own bone met was found incidentally on an unrelated PET a mere 6 weeks after my bmx. It is a very long story involving a clinical trial and a pneumothorax among other things but I don’t credit that for my long term survival with mbc. I do credit the scan for saving my life because it also showed a complete pneumothorax of my right lung and I had no symptoms! Like I said, it’s a long story. To get back to the original point, what you and I have experienced, zero to mets in an instant, is not common. I’ve been at this for almost ten years. I wish you all the best.

  • kathabus
    kathabus Member Posts: 45
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    I don't think you're grumpy or unsympathetic, LOL. You are right with what you say, but I do want to add something....

    This post is about not doing chemo with a positive node. So in this situation, we are saving waaaaaay more money than the cost of a scan. And I don't think it's unreasonable to request a CT scan JUST to make sure we're making the right choice. Because when you're in this situation, it's a BIG choice. Our cancer has already started to locally metastasize and we don't know how far.

    In my situation I had 1/1 node positive and we don't go and get more. So I needed that confirmation. I could have had 15 positive nodes. I had no idea. So to get a CT scan before radiation....didn't seem unreasonable to me or to my team.

    I get your points 100...just wanted to add this perspective.

  • txlorelei
    txlorelei Member Posts: 69
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    I also have ILC and had my Mx and lymph node removal on April 1. I already knew from an MRI that I had “multiple” enlarged nodes and a biopsy came back positive. Yesterday I got the surgical pathology results and everyone (including the doctors) were surprised that 26/26 nodes were cancerous. Lobular is so sneaky

    Now they’re going to schedule me for a PET scan as a double check. I had CT and bone scans last summer that were clear.

    They’re also changing my treatment plan to include chemo - AC & T. They did give me the option of continuing with the letrozole only, but with that many nodes, I don’t want to risk it.

  • divinemrsm
    divinemrsm Member Posts: 6,204
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    I'm going to make a few comments. First, bigmistake, I only know you through your several posts you've made on this thread you started. And it sounds like the information and advice shared here is helping you. But I want to say in the nicest way possible, please, please do not be so harsh, so angry at yourself that you “stupidly didn't research and went along with my team's every recommendation thinking they were up to date and on top of it."

    You've been through a lot in the past few months. Because of that, it is even more important to practice self-care, and that includes self-kindness. In fact, google self-kindness for tips on how to incorporate more of it into your life!

    Society places so much pressure on women to do everything perfectly: marry the perfect guy, raise perfect kids, have the perfect career, and by all means, have the perfect body, hair and clothes. And now we have to arrive at the perfect treatment plan when we're diagnosed with a devastating disease?

    Society also insists women take care of all others first and then mmmmaybe take care of themselves. Please refer back to the paragraph on self-care and self-kindness!

    My situation is different from yours as I was diagnosed with metastatic bc from the start. But I had such fear that I never looked at any of my scan reports, surgery reports or even bloodwork results for several years after I was diagnosed! I simply could not go there! I listened to my oncologist and breast surgeon; that is one way I coped with the disease.

    And I'm still here 10+ years later! Eventually I toughened up and got copies of all those reports, read them, and keep up with all current scans, ect. One thing I've learned is there are many approaches to treating this disease and no one fail-proof way to do so.

    I've had some of the best times, best moments of my life since that mbc diagnosis, not because of it but in spite of it. I well remember initially claiming bc was not going to interrupt my life. I had to get over that idea. Again, as women, we're almost conditioned to minimize our experiences so they don't intrude on our loved ones' happiness, heaven forbid we inconvenience others. Bc does not have to be all-consuming but it is okay to give your life, and your body, the time and space and attention it needs to treat the disease and if necessary, to recover from those treatments. Your body has taken a hit. Take the time to nurture yourself back to health.



  • divinemrsm
    divinemrsm Member Posts: 6,204
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    ShyViolet, it really sucks that you are so young and diagnosed with metastatic bc. I hope you’re able to get some support from this forum. Please check out the stage iv section for more insights.

    *****

    A few more comments. I realize this is all anecdotal, but after reading the posts here, I’m going to share what’s been my personal experience.

    Is chemo less effective on er+ ilc? It was very effective for me. Please note I was diagnosed metastatic to the bones from the start. The gnarly growth in my breast was over 2.5 x 1.5 inches (I do not understand cm well, so I always convert to inches). (Btw, I found the lump 10 days after annual mammo). I had neoadjuvant chemo—that is chemo prior to surgery, and it shrunk the tumor by quite a bit. I was then able to have a lumpectomy. Since I’ve had what’s considered exceptional response to treatment being 10+ years out from diagnosis, my belief is that the chemo was beneficial to me.

    Do taxanes cause mets? I have never researched it. The chemo given to me was Taxotere (a taxane) and Cytoxin. For me, it worked well.


  • rollercoaster451
    rollercoaster451 Member Posts: 9
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    Hi Big mistake,

    Did you do any genetic testing? That would be something to ask about.