Cured or Not Cured?
I just completed my treatment for a low-grade, non-necrotic DCIS with a microinvasion of very low grade cancer. I had a lumpectomy with clean margins, and completed radiation treatments, including boosts. As my recurrence chance is low, my docs support my decision to cut that chance by 30% (they tell me) with ongoing excercise, rather than 40% with a hormone-blocker. So; done. I know that women who have had any brush with BC are at an increased lifelong chance for having another BC. This isn't a "recurrence", this is a new primary. A recurrence would be if they had not gotten all of this cancer, which they think they have. One BS told me "We never consider breast cancer to be cured. I't a chronic illness". My MO agrees with me that if this is gone, I'm cured. Again, I get that having had a BC, I'm at an increased chance for another, for life, as opposed to the cancers that have a kind of all-clear after 5 years. Still; unless this cancer was not successfully removed, I am cured of it. I find it difficult to go back to normal life always thinking I have a serious "chronic illness", when, in fact, I probably have nothing. I'd like to hear what other women here think, and what you've been told, especially the veterans, but anyone, really. Thanks. - P.
Comments
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Percy,
I was diagnosed w DCIS and LCIS on December 4, 2013. I had a BMx on January 29. My doctor said because the ducts and lobes have been surgically removed; and that's where the cancer was (I had no invasive in my nodes) that I was cured! She used the word cured, cancer free!!! When she said it at first I was like really? Or are u just saying that to help me feel better about my situation. There is no way to completely remove ALL of the tissue and cells, and that makes me cautious and hesitant to say I am cancer free or cured, but she was persistent in telling me that I was. Once you receive a cancer diagnosis I think (at least for me) you don't want to let your guard down. You are always more likely to be concerned about reoccurrences or a second diagnosis. I know that is true for me at least.
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Hi Percy, first of all, yippee, you are done with the treatment. With "pure DCIS" when the cancer is removed/treated, it's not really a chronic illness. It's more like a cure. I guess, as in your case, when you have a small microinvasion, and you are Stage 1a, there can be more of a lingering feeling that you have that chronic illness. Ironically, given that I had a large area of high grade DCIS with necrosis and several re-excisions and I'm not taking hormonals, my recurrence risk is slightly more than negligible (around 12 percent, but who really knows?). At the same time, I don't feel like I have a chronic illness, and don't worry about a new primary in the other breast. The only thing is that I'm changed from where I was before. I'm normal, but it's a new normal. I just feel slightly more vulnerable than I used to. Anyway, not to be Debby Downer, but after a certain age, there are plenty of other things that can go wrong. All we can do is try to live a healthy life. My 2 cents. And we'll both try to keep up the exercise. I had already started it several years prior to the diagnosis, and lost lots of weight. I think that those actions saved my life. Given my family history, I might have easily gone on to invasive bc., but I didn't.
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Not trying to be in denial here. I just think what I'm saying is simple. If the cancer was not all removed, I'll find out. If that tiny thing, invasive while it was there or not, was entirely removed and hadn't spread, then how am I not cured, at least from the cancer I had? Not talking about a future possible new primary. -
For instance. Beesie, if you're reading this, you had a micro. It's been years. Do you consider yourself to be cured from the cancer you had?
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I'm a decider. I need to decide whether to believe, as one doc tells me, I have a chronic illness, or to believe, as the other doc tells me, that if this was all gotten, I don't. I realize the proof will be in years to come, but does anyone get that I may be cured, or am I just fooling myself? I would like to be able to believe, without being in la-la-land, that it is possible I'm cured. At least that it is possible. I see women who have a micro, lumpectomy, rads, and never get anything else. They were cured, weren't they? I do think this is more than just semantics. More ideas?
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Interesting thread!
I was Dx with grade 3 DCIS in October 2012 and had my UMX surgery just before Christmas that year.
When I received my final Pathology result, my Surgeon read out and explained my two pages of Pathology results. He said, "You are effectively cured!" "Your decision to remove the breast has removed all the DCIS and there was no invasion!" There will be a close watch for the next 5 years with a Yearly mammo, and 2 follow up appointments each year with him.
I doubt I will ever feel really confident that it is over. I don't believe there are too many, who have felt that fear after hearing their Dx, had life changing surgery and have lived through the waiting, for the final results, who can completely relax about it.
Are we cured after all that? I really don't know, but I can say that I think about it less now, than I did 15 months ago. There is a little of what I call, the "Jaws" music, you know that threatening music, when the shark is around, when I go to see the surgeon, and the first mammogram was a bit scary too.
I think, taking it a day at a time and looking after ourselves, is all we can do.
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I tend to think that I am "cured" of this, but with the caveat that there is a small chance I might be wrong. I really don't think about it one way or the other - I take my tamoxifen, go to my check-ups and otherwise try think about whether or not it might come back, although in my heart of hearts I am definitely more worried about a new primary than a recurrence.
The way I understand the issue of "curing breast cancer" though is that most women are cured through their initial treatment - the problem is that we don't know who they are until they die of something else in their 90's with no signs of breast cancer in their bodies. So it's not so much that we all have a chronic condition as much as that some of us "might" have one, and for people like us with single micro-invasion, that "might" is pretty darn small.
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From everything that I have read, DCIS, is considered curable by the experts. But the fact that there is always a percentage quoted for risk of recurrence will never allow me to feel totally cured. Some of us are also left with additional risk factors such as high grade or positive margin or micro-invasion or even young age, etc. I think I may feel cured if I had a very tiny, non-aggressive dcis at age 70 years and a mx! Lol
BUT the overwhelming majority of us will never have a problem or recurrence and I would hate to waste the wonderful years ahead worrying about if the sky is falling.
Percy, wishing you many, many worriless and wonderful years ahead. Luv
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I too had a BMX and was told by my MO that I was cured. I choose to believe that.
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I don't know if I'd call it cured, because it can recur. I do feel like this one particular area that they removed and radiated is gone. So that one area is "cured" in my mind. Still there's the more frequent mammograms and having women taking Tamoxifen. If you were cured, they'd just say have a nice day and see you in a year for your routine annual. Honestly I worry more about heart disease than bc because my family is high risk for sudden heart attacks at young ages. If the dcis comes back, I'll deal with it then. I'm not taking the Tamoxifen because the risks and side effects for me outweighs the 2-3% additional benefit.
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I like to think that at this point I am "cured", but I know in the back of my mind that I still have one breast that is still at risk. I removed my left breast in hopes of being cured and that is what I have to believe so that I can keep moving forward everyday. I still see my BS once a year and my MO once a year, so I may be "cured" but I am still living with the aftermath of BC.
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I just wanted to add that in talking to my aunt, just this weekend, who had a BMX (and I think even reading in other threads) that as time goes on, you just don't think about this dx. She actually told me she forgets about it!
While I find it incredible 1/3 of a way through my rads, I am looking forward to the day dcis isn't quite so front and center on my brain. And it has gotten easier at different points of this process. Maybe we can be cured, but cautious because the potential risk is there. I like the idea of being cured though. I hope my RO and MO tells me that. And here's to my aunt!
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I feel I am cured. I don't feel that my DCIS is/was chronic disease, because I am not being treated as such - I had my treatment and unless it comes back (as a recurrence) it is treated. Tamox/AIs are generally described as a chemoprevention (prevents not treats) - unless you are stage IV, when they can be used at high doses as a treatment. Breast cancer is a chronic disease for stage IV women because they are treated with chemotherapy/targeted therapy (tamox/AI/Herceptin) for the rest of their lives. I guess if you think of close monitoring as a type of treatment then yes, it could be thought of as a chronic disease, but I choose to think I am cured, and I hardly even think about it any more (except every 6 months when I have to have an MRI or mammogram
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I do have a slightly different perspective since I do have another chronic (progressive) disease (an autoimmune arthritis) which I will be treating for the rest of my life and for which there is no cure in sight.
Wishing you all breast cancer free days! -
Just popping in here. My Mum's surgeon told her that with early breast cancer, they are "aiming to cure".
I guess in her case (invasive) they can probably never tell if she is one of the one's who was cured by surgery, or by surgery + chemo + herceptin, or if she's not cured and at some point there will be a recurrence.
I know some people really don't like the word cured, but I find even "possibly cured" or "hopefully cured" very comforting somehow. But everyone has a different way of coping with the concepts. I guess seeing it as a chronic condition might lessen some of the trauma if there is a recurrence, so whatever works for the individual.
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I don't really think of myself as being 'cured' even though the MO said the word 'cured' when I met with him last February. I'm much more comfortable with the word 'clear' as I have read and been told that once you've had cancer, there is always the chance that you are more likely to have a recurrence or another cancer than someone who has never been diagnosed with the disease.
If that's not the case, please correct my terminology.
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Hi Sabel - I don't think you have your terminology is wrong, as it is used, bit that's kind of my point. I'm having trouble understanding why breast cancer seems to be thought of differently from some other diseases. If I have a cancer and it is entirely removed and has not spread, then I don't have it anymore. I am cured of what I had; nothing of it remains. If it was not all removed, as I thought is was, then I thought I was cured but I wasn't. If it was, and I get another BC in the future, that's a different one. I get that I am predisposed. I do not agree that it is a chronic illness unless, as BL said, it is Stage IV, as it cannot be cured at that point and then becomes treatable, not curable. If I have a cold and it is gone, I don't have it anymore. That cold is cured. If I tend to get colds, it isn't a chronic illness; it's different colds. If I have diabetes and I manage it, it is still there, and is therefore not cured. Simple, but true. This isn't a word-game. It is about how to correctly and reasonably perceive one's state, or what reasonable assumption to make to do so. Like; do I have a future or not? If the treatment was effective, and I was cured of THIS BC, I do. If something was missed, my future may be very different in quality and time. Separately from definitions, this is about how to look at the future. At least me. While I do believe breast cancer can be cured, unless too far progressed, I can only presme that I was cured. There is a very small chance I was not. Only time will tell that, so the definitions don't matter so much, really. Just what happens matters, finally. It is difficult to be prepared for a likely 30-year-future and only a likely 5-year-future at the same time. For women who have their lives essentially the way they want them (mate, loved job, whatever), either thing may seem acceptable, if it has to be. For women who need time to get to where they want to be in Life, the difference becomes more important. Yes; we can all enjoy what we can enjoy in the moment (as time is promised to no one), but for some of us, there are larger things that we do not have right now, and need a future of some size to attain. I'm just needing to center my expectations, or not have any. I do believe I'm there. Statistically, I should have a long future (unfortunaltely, I'm predisposed to that being marred by a possible future BC). There is some small chance I don't have a long future, from this. I can disregard that, as it is so small a chance as to be the same as other unpleasant possibilities. I'll have to go with that.
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Thank you all so much, ladies, for your input. I think I have figured it out. I do feel I am cured, probably, of this episode of BC. I am trying to "bargain" with Life, to see if I have a long future, because, unlike many people, I have had a brush with the unknown. It may sound simple, but my resolution really has to come with accepting that no time is promised. We all know this, intellectually, but when we have a life-threatening illness, it is brought to the fore. So. There it is. A lot of talk, back and forth, but the end result is as expected. Give more importance to today. I will no longer save shoes, make-up, trips (that I can afford), talks with loved ones, everything, etc. I will bring them out now, expecting (reasonably) a future, but also knowing that today is it. This is true for everyone walking through Life, but we have been appraised of it. I'm kind of sorry about that, because the illusion we normally have about all the time in the World is corrupted. Thinking one has all the time in the World is a great thing; it gets people on. I have to know that possibly isn't true, more than most, and still like my Life. And all of you, as well, though almost all of you here will be just fine, as I will. I'm glad I have here to come to. Not too self-expectant, I hope, but maybe I should write my book (I am a writer). xx
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I don't mean to be a s**t-disturber, but how do all of you ladies feel/fear about your futures? -
another interesting thread here....and Percy, I am getting to the same place you are. I want to use my time for the things that are meaningful to me and my family. And I've started writing again, too. Nothing puts doubt in you like the ups and downs of tx. Thank you all for great thoughts!
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Hi Percy,
I had a small IDC tumor seven years ago. My radiation oncologist told me I was "cured" of that particular cancer. On the other hand, at that time, my surgeon told me that breast cancer was now considered a chronic disease. I know the cancer I had years ago is gone, but I also know that there is no cure for cancer. It may or may not come back. I've had too many friends have their cancer recur or get new primaries and mets to think I will ever be completely free of cancer.
Hope all is well with you.
Bren
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I am two years out from an IDC dx. Yesterday my husband was telling me about a business deal he is doing with a pathologist friend. I said ' Do you think she can look at my path report and my MRI? (to give me an answer to something that still bugs me.)" " Or, do you think she can give me a guarantee?" He grinned. I said, "That is what I really want, a guarantee that it isn't coming back." He grinned again.
Sigh.
Thanks for a great discussion you amazing BCO ladies.
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I am out 2 years, and I feel cured (knock on wood). But do we ever stop wondering?
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I certainly get that we are more likely to develop another BC than a woman who has not had BC. I also get that if we (and our docs) believed our early-stage BC was entirely removed and that it hadn't spread, but we were to find out later we were wrong, then we never were cured to begin. So, no, I don't think any of us will ever feel completely sure it was cured, because that can only be proven years later, in retrospect, if it was. A more appropriate word than "recurrence" would be "revival" or "regrowth". Really, "recurrence" means something was all gone, then returned. Like a recurring Broadway show, say, but that is brought back on purpose, not by itself. A disease is different. If it was all gone, the same one can't return, another can only come anew. It it was not all gone, in time it would grow enough to be seen again, and also may have spread by then. I looked at several articles, and while I see that there is a leaning toward thinking of BC as a "chronic illness" by some, this is done, really, in the context of being reassuring that it is treatable and not an immediate death sentence anymore, even in the cases of Stage IV women. Much as HIV infection doesn't completely go away, but can be treated so well now that it is considered a chronic illness. What I took away from most of the articles was that the chronic illness status is applicable to Stage IV cases, and that treatment for early BCs are aimed at accomplishing a cure. No; there is no one cure for cancer, full stop, but certainly in the last many years cures have been found for some cancers. If you remove a melanoma before it has spread, it's gone, not chronic. Etc., etc. So, I maintain that "chronic illness" is being way too broadly used as a blanket statement when very early BCs are included in that term. Interesting the differences even between the way the docs of the ladies here talk about it.
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I was dx with DCIS in Nov 2011..Had Mx, clear margins and 0 node involvement. It was suggested to me to take tamox but I chose not to after discussing it with my onco. Anyway, my onco told me that I was 99% cured even without the Tamox. Both my doc and onco explained why I was only 99% cured instead of 100% cured. My risk of getting a recurrence or a new primary cancer is higher than that of a person that has never been diagnosed with the disease .......Now because I have had a diagnosis of bc it just means I am at higher risk than someone who hasn't therefore I cannot be considered 100% cured. I am sorry if my explanation sounds stupid but I can promise you it's been given to me by a medical professional.
The reality of our situation is that we lost our innocence the day we all got diagnosed with bc and we can never get that back.....so even if they could tell us that we are 100% cured of bc, I can bet you that we would still all have the little worry bug nibbling at us from time to time....once you become a member of the cancer club you are changed forever cure or not. All we can do is be grateful that we are here and gain strength from each other. It's ok to have those bad days or even weeks where we are stressed and downright scared that it may come back etc.....there are also our good days and some days that are even 'freaking brilliant' because we forget about our diagnosis . I have got amazing support here at Breastcancer.org.....it's my little haven where I come to get comfort from some really awesome people.
Percy4...I'm starting to realise that our 'cure' is to live in the moment knowing that right now we are NED.. and do the things that make us happy. I can say this with total confidence because I too have spent what seemed like an eternity worrying about all things bc and now I only worry sometimes. To answer your question definitely....no doctor will tell you that you are 100% cured . Take care.
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