Remission or "cured"?
Comments
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Lowrider - thanks so much for all the good information!
Karen
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Remission, Breast Cancer can come back after years of diagnosis and in any place of the body, this is the reason one has to be attentive to any changes and make sure to see your doctor yearly , or earlier if needed.
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I forgot to add that I work in a cancer center and I have seen recurrences after 24 years and were call such because pathology showed it was the same type of cells, this idea of "chronic ' is to make women think of cancer as diabetes or something similar.
Many in the medical field like to sugar coat information regarding women; and one can also be on higher risk for ovarian and vice versa.
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This IS a RANT, in part:
mmm5 - The Topic of this thread is 'Remission or Cured' - a quite appropriate place for this debate.
You do realize that 'chronic' could mean that I am going to LIVE while cancer is still present in my body but with treatment, I may get to live with it and not find myself in the grave and get to die of something else - ripe old age would be nice, however, not likely.
70% of BC is cured? Ok, 1 in 8 women will develop breast cancer this year, that is roughly 13 out of 100. Of that 13, 8 - 9 of them will be cured and never experience a recurrence but 4 - 5 of them will.
I would love you to show me where your statistics come from, what reliable medical and scientific data you are siting and prove to me without any doubt or reservation that there is, in fact a CURE for breast cancer - not removing it, leaving a body 'cancer free' but something that actually attacks the disease, kills it and prevents it from ever, ever, ever coming back. Show me. Show us so we call all take advantage of the 'cure' instead of being scared to death of a recurrence - erradication isn't a cure - it is removal of the cancerous lesion(s) and with clear margins and no node involvement, you may well live the rest of your life cancer-free. You would be a true cancer survivor. That would be like saying you had your foot amputated because it developed gang-green to save the rest of your body. You no longer have gang-green but did it cure it or simply remove the infected part? You survived it and live a long healthy life but would you call yourself cured of gang-green?
I am putting my money in the off-on gene research that actually seems to be making progress in the ability to develop targeted treatments to prevent cancer cells from destroying the cells they invade offering a true 'cure' for the disease and not the present 'cut-it-out and its gone and call it cured' mentality.
As annoyed and angry as I may make some - I am just as annoyed and angry at the medical profession for allowing so many women to believe that they are 'cured' and therefore are not as vigilant in watching for any and all indications that there may, just may be something going on that needs attention and by the time it becomes so utterly evident or some happen-chance test reveals an anomaly - this vibrant woman finds herself once again in the battle with the beast - only this time, erradication may not be possible and it is a fight to the death.
Oh, by the way, after erradication (with removal of 25 nodes and yes, in 4) and chemo and Tamoxifin - at my 5 year mark, I was told I was 'cured' too - no evidence of disease. I did the happy dance, continue my yearly mamo's, self examined my good booby but until my 10 year mark, it was not deemed 'medically necessary' to have any additional testing since I was considered cancer-free, NED, or 'cured'. Funny, my breast doc requested a breast MRI because of my lumpy breasts to get a 'baseline' but I ended up having an xray first and low and behold...an anomaly, more tests, more funny stuff and finally a bone biopsy - bone mets after 10 years NED. But I was cured? Apparently not.
So, am I just one of the unlucky 30 -40% that isn't really cured. While it may look good to say 60-70% of BC are curable - I don't like the flip side that 30-40% are not. Do you like the odds? Personally, had I not been told I was 'cured', would I have maybe insisted on more thorough testing in those years? Since there was no local recurrence, it was going to be mets but maybe only one small tiny one - who knows...and now from the program last night, they are saying that additional testing does not increase the overall survival and is medically unnecessary and only makes it more costly without having a significant impact? WTF is going on? It is my life, your life, our mother's lives, our sisters, our friends...'doesn't impact the overall survival rate' - that is a pretty good indication that too many women die too soon from breast cancer - 1 is too many.
Feel free to disagree if you believe that 30-40% of women diagnosed with breast cancer this year are likely to die from the disease (and NOT something else) is ok as long as 60-70% are 'cured'. That additional testing for those 30-40% would be medically unnecessary and too costly as it won't improve their odds of survival. I shouldn't have read the article, I don't know what to believe - now I am madder than a wet hen in a coop full of roosters!
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Lowrider54, Thank you so much for your excellent post. You stated my views exactly, although I didn't know the numbers. I still don't believe there is a cure, just an extended remission.
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My primary care Doc says early stage breast cancer is very curable. We just have no way of knowing which of us are cured at this time. I have to believe she is correct, as does she, as her mother has early stage breast cancer too...
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This thread is on the Stage I and II forum. The vast majority of women who are diagnosed at those stages are cured by surgery. The problem is that medical science at this moment has no way of telling which ones.
Breast cancer still affects 1 in 8 women, and typically is more common the older women get, so just because someone has breast cancer at a younger age and is cured, there is no guarantee that they won't develop the same type of cancer again, especially if they continue to be exposed to the same environmental and lifestyle triggers.
There are some things we know can help prevent cancer, especially breast cancer, but they don't get much press. Diet, exercise, vitamin D, and alcohol consumption are all parts of the puzzle, but they aren't glamorous, and don't hold a large profit motive.
Some diseases like measles confer immunity from future illness, cancer does not. That doesn't mean it wasn't cured. If you get pneumonia, are cured, and get it again twenty years later, no one thinks that you have had pneumonia for twenty years, although there may be a suspicion that you are more susceptible to it than the general population.
Stage IV cancer is different. There is treatment, but no cure. People with stage IV can achieve remission, sometimes for a long period of time, but they are not cured. Yet. That is what we need to work to change in our lifetimes.
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lowrider54 - thanks for a great post! It really puts things in perspective.
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Lowrider
I am sorry that you feel that this is a personal issue, you keep quoting issues from you own experience, and I have read many of your posts and you seem to be a great lady that gives great support and comfort.
This issue (this particular thread) is not an emotional one for me, (that is it is not one that I was agonizing over, I actually came on for someone that PMed me) if it was personal I would say I hate every part of this disease and I also hate the dark cloud that hangs over my head daily that reminds me of recurrence possibilities, it sucks and I deal with this every day of my life. However it does not change the fact that facts are facts. I am not going to take the time to pull up journal info for this thread, I don't have that kind of time, I have read them often and recently I attended a 4 Onc panel q and a from a very renown teaching university and they discussed one such study in detail. Next time I am at an Onc appt. I will ask for a copy and try and post here. If you really want those studies they are easily googled.
My concern is this is a forum for stage 1 and 2 to come and share their fears and I had a PM (from a new stage 2 gal in that is dealing with much anxiety) at the beginning of this thread asking if it was true that there is always always a stray cell that gets out, like one of the earlier posts stated and "does that mean that we will all succumb to mets at some point" the answer is No, I think we can all agree on that point and so in essence in the very simplest of terms some are cured. So I ask again why are you so intent on proving other wise this is not a personal question it is statement of fact. I hope we are not dealing with pure semantics on this point because that is a simple solution. I really have never gotten upset on these threads as I try to be very respectful to where all are on their journey and I would never go on stage iv thread and try to prove that many are cured, I certainly have respect for that space. I ask that you give the same respect to stage 1 and 2 forum here by allowing them to feel some comfort that in "some" cases BC will not return for them and that in itself means they were cured or if semantics are a problem for you then "it just didn't come back". (is it really important to prove otherwise and if so why?)
As I mentioned previously of course all of this upsets me and I have lost 2 dear friends and my aunt as well to BC, no one here has ever disagreed that many will not succumb to this disease we have only stated our opinion that some will not. I ask again why you want to argue this point and why that upsets you so much? Again Lowrider no one is disagreeing with you at all, we just also have a right to state our opinion on the outcome of this disease. Don't misinterpret my intentions anymore, as you can't possibly know how I personally feel about this disease, obviously if I thought is was all happy cures all the way around I would not be here posting as often as I do and discussing my fears with others.
That is all I am going to say on this, because my intention is not to change any ones mind here just to support other gals in their hope that these fears are normal and there is hope whether it be small, medium or large (that is subjective) that they may be one of those where they will not have their breast cancer return.
**Bonnie of course I know there is no stage V it was just a typo. Sorry! As I reread my post I again am flabbergasted that this is an argument, I have never argued on these threads ever..it seems ridiculous, as we are all here because we have some need to be fulfilled which is support, compassion or just education. I am not here to prove anyone wrong much of life is perception anyway so if I have offended any here I surely apologize I don't think any of us need that in addition to all else that we face.
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I think people are getting caught up in wording. There is no cure for cancer. I think we can all agree on that. However, yes, you CAN certainly be cured of the cancer via surgery. The surgeon has cured YOU of the cancer, not cured the cancer itself.
I think you either have cancer cells floating around, or you don't. If you get a distant recurrence, then you've always had the cancer cells and now they are showing up as symptoms or on tests. If you don't have the cancer cells after chemo and/or surgery, then you are cured. As mentioned previously, there are lots of people who no longer have ANY cancer in their body, and will NEVER get a recurrence. We just can't figure out who does and who doesn't. I was told it was likely I was cured at surgery. Am I cured? I have no idea, I guess I will know in several years when I either get mets or I don't. I am 35, diagnosed at 33. If I live to 80 and die from something else, I am pretty sure we can call that "cured".
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Thanks, Lowrider for the valuable websites you listed. I think the bottom line here is perspective, you believe you are cured or you don't. I think we should all remember the goal, and that is cure for everyone. If you are a 1 or a 2, how many of you still think it may come back? Wouldn't you like to live the rest of your life knowing there was a cure? I think we need to keep our eyes on the prize. I want that cure for all of us. Maryiz
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mmm5 - I was stage II once too and thought I was cured - happy, happy - I do not mean to scare anyone - just be vigilant about yourselves - don't count on the medical community, trust your gut. Just because I am stage iv now, my experience at stage II is irrelevant? This board wasnt' here for my first time around or I would have been on it. My cancer free 10 years mean nothing? Being told I was cured has no bearing here?
I am only a year new to mets - and I have googled and googled until I was googled out for 11 years - since I was stage II. I have a 3 drawer lateral file filled with studies and documentation and findings and research - the result of my googling was a resounding - no known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence.
Semantics are important - this is where I disagree - one could walk away thinking life is all fine, as I did and miss a miniscule clue to may have lead to an earlier dx that may have more easily been treated than what I face now.
If I can educate 1 person - just 1 person and that one person does NOT end up with mets...then all this banter was worth it. I am sorry if this offends - I just cannot express enough how much it matters that I never want anyone to ever end up stage iv that could be prevented from doing so by a adding a little bit of 'awareness'.
I am not alone in my opinion, by the way - there are a growing group of us from around the same time frame that wish "If I had known then (at the early stage dx) what I know now (at the mets dx), I may not be a stage iv today". If that makes this 'personal', then it is.
I found nothing that statistically supports your statements of facts. I am concerned that too many will rely on they are 'cured' and find themselves in utter horror and disbelief and feel cheated and lied to that they were 'cured' - it can't be back rather than be viligant and err on the side of caution to avoid those things that could decrease the odds of living cancer free for a lifetime.
Again, I say as a matter of fact based on 11 years of research from every available source I could find - the compiled overwhelming majority states: No known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence. Therefore, there is not always a stray cell.
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Yes most definately - it's all about prospective. Sometimes those with an incurable cancer have a tendency to feel breast cancer in general is never curable because it's what they know from their own experience and their own current situation. I don't mean this as a derogatory statement, but sometimes misery loves company and it's more comforting to think everyone is in the same boat. Realistically, there will never be a personal cure for each and every person diagnosed with breast cancer because there are just too many variables among individuals and among the many different kinds of BC.
I spent 14 years as a hospital oncology nurse . I began back in the days when most women got axillary dissections and mastectomies and virtually everyone got chemo which initially, was almost always done as a hospital inpatient. It was brutal back then - no better words to describe it than that. They would get diagnosed, have their surgeries and then come and go in the hospital recieving their chemo and then for some of them, eventually returning to us to one day die.
Working there for such a long time, as many of us did, our prospectives about BC prognosis became very tainted. One day after a patient had died, a few of us were talking among ourselves expressing our dismal feelings that sooner or later everybody dies of their breast cancer - because from our prospective, that's exactly how it seemed. An oncologist overheard us and told us that it was absolutely not true. He decided that we desperately needed to see the other side of the coin and so he set it up so that each of us rotated through his oncology office practice for a day or two so that we could see the many women who had been cancer free for a very long time, sometimes for decades. He also pulled many office charts and in addition to actually seeing some of those he consided probably cured, we could see for ourselves in the records that not everyone dies of their breast cancer. It changed our prospective entirely.
Most breast cancer can be cured, especially in stage I and II,and many are, but some aren't. It's only stage IV breast cancer that is considered incurable and so it's treated palliatively instead of with curative intent.
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I've been reading this thread with great interest and I thank all of you for your POVs on the matter and for the information (where there IS information) as well.
Lowrider - my heart aches for you having recurred to stage 4 mets. I just finished my Herceptin so I guess that means I'm a year out (I had two lumpectomies, then CHEMO, then my MX -- by which time the tissue removed was all NED)... which I recite to say: I'm still close enough to the whole experience that I don't feel like I am cured though of course I was thrilled to hear the NED pathology. So I am cautiously optimistic -- and occasionally I live life without a care or a worry and that is countered with days of great worry -- most of the time though I'm just in a careful state of mind, maybe even an NED state of mind (which is not a cured state of mind). I address all of this to you because I wondered -- since, if I read what you wrote right, you seem to feel you ignored a sign/symptom -- what was the symptom you ignored?
Thanks all for this very worthy subject.
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great thread. thank you.
i guess after 8 years...i don't think about cure...or even remission. for me....i think...there is no cancer. 8 years ago...there was a lot of cancer. i think it is a matter of perspective. before diagnosis...i wasn't a cancer patient...(but there were cancer cells lurking)...after surgery..chemo..rads and arimidex...i am NED. i guess i think i am back to where i was prior to diagnosis. if it comes back; then i will deal with it then.
my experience is that you find a new normal after a cancer diagnosis. i don't pay attention to statistics or numbers. i am either clear or i am not. if i am not; then i am back in treatment.
it is a rough road no matter how you look at it. my best to all.
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Lowrider - thank you for your excellent posts.
I saw my oncologist Monday and asked him this question. When I was first diagnosed he had told me that "we don't use the word cured anymore" and I had too much information to process to follow up with that at the time. He explained to me that with breast cancer (and melanoma) they do NOT consider them to ever be "cured" because both are prone to "late relapses." With most other cancers, if you make it to the five-year mark, your risk of relapse goes down to the same as the general population. This is not true for most breast cancers. That does not, however, mean that it cannot be successfully treated, particularly in the earliest stages. He also noted that it is impossible to determine WHO will be successfully treated and whether the cancer is actually gone.
I am one of those fortunate "Stage I, grade 1" people. But I get what Lowrider is saying - there is no guarantee in being stage I - I could be diagnosed next month with Stage IV - or I may never have another incident of cancer again. Odds are in my favor - low oncotype score, no nodes, etc, but I do not consider myself "cured". NED, yes; cured, no. Not unless they actually can come up with something that can TELL whether there are stray cells lurking dormant somewhere or actually succeed in coming up with that "off" switch that can make sure it will never metastasize. And I agree with Lowrider: 30 - 40 % having a recurrence are HORRIBLE statistics.
Karen
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Lowrider54 wrote: "Oh, by the way, after erradication (with removal of 25 nodes and yes, in 4) and chemo and Tamoxifin - at my 5 year mark, I was told I was 'cured' too - no evidence of disease".
And there's the reason you are so angry and believe there is no cure. Can't say I blame you since that's what you were told to believe, but there's a big difference between how you started out in this breast cancer journey (stage II-III with 4 positive nodes and the 5th about to be included as well) and many of the women here you're trying so hard to convince that they need to be waiting for the other shoe to drop for the rest of their lives. Now I'm going to ranting too.
You say you're hoping to prevent someone from ending up in your situation and don't want anyone to miss a miniscule clue in thinking that they are all clear. Yet you and some of the others on the stage IV forum get very angry when those with a lesser stage cancer go there and ask questions which you ladies admittedly interpret as a request to be assured they're not going to end up like you. If you're mission is as you've stated here, then why do you get so angry when they ask these questions of you stage IV ladies? One would think that you'd welcome the opportunity to make sure they know they'll always need to look over shoulder for the rest of their lives.
And they're most likely NOT going to end up like you though - not everyone has multiple postive nodes at initial diagnosis and that's just one factor that automatically put you at a much higher risk than many others that don't have that problem from the get go. I nor anyone else just casually reading these forums even knows what grade your original tumor was, or how big it was, what the hormonal status was or maybe even if it was her2+ back then too because as best I can tell, you've never mentioned it anywhere on this forum - as if all that information and the multiple positive nodes didn't have any impact on how you ended up with distant mets. Being clear and forthright on all that information DOES matter - most importantly since you're trying to convince others that they're likely going to end up like you someday. If you insist on continuing to spread your message of doom and gloom for all BC patients, please AT LEAST be forthright with your own BC information in your signature line so that others can see that their situation might be very different from yours.
I'm very sorry you were told that you were cured after 5 years and as I already said, I can truly understand your anger at having gone about your life thinking all was well only to later find out it wasn't. I'm sure it must have felt like a bomb dropped out of nowhere. You really shouldn't have been told that considering your circumstances. But your situation isn't everyone's situation, and many, many people live out their lives without ever dealing with breast cancer again.
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((((Sharon/Lowrider)))) I think I'm gonna go throw up.
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MarieKelly, your last post is so out of line; hurtful and uncalled for. You are obviously a smart, thoughtful lady...please re-read what you wrote and consider removing it.
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Many people will live their lives with out having to deal with cancer again, true. But, many people won't. That's a fact not an opinion and I the reasons behind that are not going to be sorted out on this forum. When I spoke with my primary care Dr. about this very topic....he said once you have been diagnosed it is deemed that you have cancer cells lurking. He stated that very bluntly. Where the dice rolls...who in the h*ll knows.
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I agree with Suzybelle. That was more in the lines of a personal attack rather than a discussion. As a newbie, I am very disheartened by it.
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Lowrider, I agree with you completely. Breast cancer took my mother, my mother-in-law, my daugher-in-law's mother, and 4 close cousins. Most were caught early and some heard the word "cured" .... but clearly not. Until women stop dying of this disease - and I mean 100% of them - I cannot consider that there is a cure. ......and not only that.....even if you think you're cured (as I did once) it sneaks up on you and gives you a second dose...not mets....just another go round of surgery, chemo, rads etc. etc etc. I am glad that many more women survive now than they did 25 years ago but that is little comfort to my DIL who's mother died just a few months ago after being "cured" of stage IIa for 8 1/2 years. I have no need to convince anyone else ..... we can all believe whatever works best for us. And if it works, then it's good. I'm not interested in arguing different points of view.
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Lowrider, I appreciate all you have to offer here. {{{Lowrider54}}}
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All I know is once you've been diagnosed with cancer the insurance companies consider you un-insurable (right now) if you need to buy a new policy. Do I believe that some people will never have an recurrence, yes. Does it matter if I call them cured or NED, no. What matters is these NED or cured folks are living their lives without having to deal with cancer treatment.
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I am the original poster of this thread in search for the truth. I wanted to know, I needed to know. I value every single post and have been listening intently.
But now, it is obvious to me that there is no cure for breast cancer. I'm just being real with myself in saying this. There's no way for me to know for myself that I won't have a recurrence. But it looks good for me that I will not. It saddens me to know it won't be the case for other sisters here.
I will be hypervigilant with my cancer. After all, I could still have a recurrence if I am not mindful of it. And I will add a healthy dose of denial. Why? A social worker once told me "denial is okay" In other words, she was telling me to think that planes don't fly into buildings. It was a way of denying something I couldn't change, thus eliminating some of the anxiety that went with it. I will try and live my life without the fear of recurrence, and shoot for NED. That's all I can do. I don't know what more I can do.
Since my dx on 7/21/2010, I started wearing this pink band that said, "say it - fight it - cure it". Wearing it in the beginning helped a LOT. But now, not so much. I took it off today. I need no reminders that I have cancer. Be mindful of it? Yes. Daily reminders? No.
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Re: No known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence.
I totally agree with this statement. It's a bit of a crap shoot, and until you die of something else, impossible to say for sure. Frankly, no one knows what the future will hold. My mom is now 20 yrs out from BC and has never had a recurrence. I'm 10 months out, and although I want to believe my onc who has said to me "you're cured", there's still a little part of me that wonders about whether there are some lurking cells. But such is life........there are NO guarantees. As long as you're NED, no reason to go looking for trouble. Be vigilant, but don't obsess, and live your life.
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Hear hear Winter. I am walking Saturday but a daily reminder is something I am trying to eliminate (with the help of a shrink). I dream about breast cancer every night and as a consequence, end up sleeping about 4 hours (when the ^&%ing dream wakes me up). Shrink is helping, though and so is melatonin. But I think walking the race will slam the lid down for me. Who knows why but I am deciding that will be IT for the no sleep stuff.
I am NED but not cured.
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((Lowrider)) and thank you so much for all you do, and for sharing your research, and your heart.
I think I'll get a dog and name him NED; no one will think I'm too crazy when I go around singing "Here, NED.."
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Marykelly,
Like others have posted here I felt that you were personally attacking Lowrider. I took her post as a reminder that all of us who have gone thru this fight need to remain diligent, and if we feel that there is something wrong, then we need to trust our inner instincts and have it checked out and not have the "well, my onc said I was cured so it can't be cancer". We all have our own instincts that we need to listen to.
Lowrider
Keep up with the great posts.
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Winter..I think you have the right attitude...ok..maybe there is not a cure..but I know several women that have had breast cancer years and years ago and they are just fine...sadly I know of several women that have died of this disease also...you just can't think of it every day...I know how hard it is to NOT think about it..but you can eventually put it in the back of your mind and MOVE ON..you have to..we all just have too..IF the junk comes back..well..we will deal with it then...there is no way, no how we can sit in a corner and freak out about it..easy to say...harder to do..from your signature you are basically a newbie to this..I'm 18 months out and it does get easier....I really don't have time to focus on it so much anymore..got kids, a job..a wedding to plan, a good DH...I want to put cancer in the closet..hopefully I don't ever have to get it out again...
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