How do you get past the fear of recurrence?

I have a lot of the same questions as Colt. I am only 30... so seeing stats like, "98% 5-year-survival" is not at all comforting to me. I need to live at least another 15 years or so to see my son to adulthood. I'd love to live to be 80 but really, I'll take what I can get. I find myself discouraged at the lack of long-term stats. I would like to see 20-year and even 40-year survival rates.

My fear is less about recurrence itself and more about survival. When I hear something like 30% chance of recurrence, my mind immediately translates that into 30% chance of dying. I know that's not entirely accurate, but it's what I fear. I am afraid of dying, afraid of being dead, afraid of not being here for my husband and especially for my young son. 

I'm still in active treatment so I am more concerned about just getting through that right now, but many many nights I stay awake googling recurrence & survival stats. I am worried about how I'll feel when I'm done chemo and kind of left to the wind. 

So I guess my main questions are... What are the long-term recurrence stats for someone with multifocal Stage I IDC (and DCIS) who had a BMX and 4 rounds of T/C chemo and 5 years of Tamoxifen? What are the chances my SNB was a false-negative and it's still in my nodes somewhere? How serious is LVI, does it increase my chances of recurrence? What is the likelihood that I already have undiagnosed mets (since I didn't have any scans for this)? And it all boils down to... will I be here to take care of my son until he's old enough to care for himself?

I appreciate focusing on the positives and what we can do to maximize our odds...



I guess I'm just trying to establish if young ladies, aged 41, stage2b with 1 positive node CAN live a long life without recurrence. Do they? Are they likely to?



Can anyone address that? I realize that long term survival rates are tricky because even a 20 year survival stat would have to be from a sample of women treated in the very late 80s (giving time for the data to be organized and packaged for presentation). Longer survival rates get even less meaningful as treatment changes. I mean, I WANT 40 year survival stats... But that would be based on treatments available in the early 1970s. STILL, we should have 40 year survival rates available. JMO. Information is good... and information is lacking. JMO.

Colt - there is NO answer to your question.  And it's that unknown the OP is addressing.  Looking for an "answer" to your original question is a fruitless search.

There are SO MANY, MANY situations, esp. of E+, coming back, 20 years after orig. diagnosis.  Sorry, but it's true.  I have a friend who had a BLX and developed a "new" cancer in the scar tissue about 21 years after orig. was treated.

I know nobody can tell if she WILL live a long life... what I'm asking is CAN she? And if so, is that an improbability----or is it a good chance?



Have people lived long lives after being diagnosed Stage 2B, 1 positive node at age 41?



I appreciate all of the positive outlook advice. It all makes sense.



I just want to know if women live long with positive nodes without a recurrence. Ever. Or is just inevitable that it's going to come back?

Colt...you are playing a game of semantics! The answer to your question whether you use the word "will" or "can" is the same. Today there are patients who woke up this morning and thought they were healthy and are going to bed tonight knowing they have cancer. Can or will any of those people diagnosed today, whether they be diagnosed Stage 1, Grade 1 or Stage 3 Grade 3, be alive in 10 years, the answer is no one knows. Will they be alive in 20 years? Can they live another 40 or more years? Yes they CAN! Will they? No one knows!



Do you see where I am going, Colt? In my book, the words "can" and "will" take you to the same place! You are stumbling on statistics and semantics and looking for a seer to tell you something that is unknown. Why punish and exhaust yourself with such thinking? Be kinder and gentler with yourself and try to let those thoughts float away!

Maybe I should reword my question, though ruthbru seemed to answer this already:



HAVE women lived long lives without recurrence after being diagnosed at age 41 with positive nodes?

Colt - YES is the answer and many stage three people too, a friend of mine had a very aggressive bc twenty years later and she has been fine ever since......



My take on nodes is that they are doing their job as bouncers and many node negative women get recurrences way before node positive, way i see it is its a lottery and all each of us can do is the best we can to boost all round health bearing in mind that everyone who has had cancer has circulating cells afterwards, the issue is whether we can destroy them before they land and start to grow, there are lots of things that help with this, exercise, diet, belief in yourself as well as natural things shown to improve survival in observational studies.....



I try and think i am well and healthy to myself every day but some days its the last thing i feel! Maybe you and your wife can work out a wellness plan that works for you? As for statistics they are normally five to ten years out of date anyway and as no one knows what side of the fence your wife will be they really are irrelevant.....



Hth

Again Colt....HAVE?  Semantics, statistics and seers!  I know you are aware of how long term survival statistics are accumulated and how misleading and obsolete the current ones are. Would you like a magician to go back in time and apply all that we know now about tumors to all of the previous data and update the data so we would know better the outcomes?  Considering that we now have computers and with the dawn of genetic markers to help keep better track of how patients do, the answer to your question, with respect to your wife's tumor's characteristics, whether it be  "WILL,CAN, or HAVE" patients gone on to live long lives the answer will be known a bit more PRECISELY in another generation from now!  And in another generation from now, another Colt will come along and ask the same question that you're asking.  And someone like myself will answer, "Wouldn't it be nice if we had a magician to go back in time with and fine tune the data with what we know NOW, so we could better predict patients' prognoses?"

Let me share with you what is going on with me. Maybe it will help explain why I'm obsessing about whether 41 year old's with positive nodes have lived long lives without recurrence.



My wife and I are really struggling with the rads decision. We had a horribly conducted consult with an RO as 2nd opinion. So I'm upset in general right now.



The ROs keep saying that "if you were 80, we'd say no... but because you're 41..."



This is why I'm wondering if the recurrence is inevitable. Or have younger women never had it come back, despite positive nodes (and lived a long life)...



I am NOT asking for crystal ball predictions for my wife. I wish we could stop saying I am.



I am asking for historical findings. HAVE young women, with positive nodes lived long lives with no recurrence? CAN they? Is it possible? NOT "will my wife?". I know that is unknown.



I'm hearing from a number of you "yes, women have."



That's really all I'm asking.



I am grateful that all of you have been trying to help me in general.

Colt, obviously I am not a doctor, but as another very young BC patient & based on my own experience, I want to take a guess at what the RO may have been getting at.

The average life expectancy for a woman in the US is in the range of 78-86 years. If an 80-year-old woman with BC has a recurrence a few years down the line, she is already nearing the end of her expected life span. She is probably just as likely to die of other causes than the recurrence. In fact, she may be more likely to die from aggressive BC treatment than from the BC itself at that point.

A 41-year-old woman can hope to live another 40+ years. If she has a recurrence, even if it's 10 years down the line, that recurrence could kill her long before the end of those 40+ years. Additionally, younger women may be physically better able to withstand aggressive treatment... so it just makes sense to attack it as aggressively as possible, minimize the recurrence risk, to give her the best possible chance of live to 80, 85, 90 years old. I don't think the RO's are saying to do rads because recurrence is inevitable. I think they are saying that because she has such a long life ahead of her, and they want to do everything they can to prevent any chance of recurrence.

Hi Colt -  I read your post on the other thread about the 2nd rads opinion and I am sorry that you had that experience.  That is just insane!!    

You are getting such good advice from these incredibly intelligent women.  Its actually helping me mentally when you post such questions because the wisdom I am gaining is so helpful.     

I look at it this way.......The majority of women who were diagnosed with breast cancer, node positive, node negative, big tumor, small tumor, young or old, are out living their lives!!!!  They are not on these boards like we are!!    You aren't going to get all the information you desire....and I know you know that.   Yes, some live long lives and some don't live long lives, but the mystery is we don't know why some do and why some don't.  Its really pretty simple and again, I know you know that....(LOL). 

As you know, I was diagnosed at 42.  I've always said that if I live till I'm 60, I will be surprised and very fortunate.  I honestly don't think that I will live past that though.   I don't know why, but I figure that being diagnosed this young, the odds are against me.  But then I think, if I go 10 years without a recurrence or metastasis, who knows what science holds in the next ten years and what miracle drug might be out there to give me another 10 years of life??    

So, how do my husband and I cope with that reality....well, since my diagnosis, we realize more than ever that we not in control.  There is nothing we can do except live our lives.    So, in the meantime, I am trying my best to do that and enjoy my children.   I'm still the same person with the same fears of this dreaded disease, but my outlook on life is very different and I don't fear any more.  You and your wife will feel that way, some day when you are past the treatment and the surgeries.  

My husband always tells me that our lives are just a "blip" in this world.  We are not on this earth for long that's for sure.   I have accepted that and even though it makes me sad when I think that someday my husband might retire to Florida with another woman who will enjoy my grandchildren and she will get enjoy the fruits of his labor all these years, I accept it.  Its sad, but I accept it. 

Just reading all your posts regarding the radiation, I think it would be best if your wife did have radiation because I'm not sure if you would be able to rest easy knowing that she didn't?   My decision NOT to have radiation, as you know, didn't come easily, but I've definitely moved on and I am at peace with that decision.  Yes, some day down the road if I have a recurrence, I might say "Its because I didn't have radiation back in 2012"........but, I can live with that.....

Thank you to everyone for this thread.  Its going to be a favorite now.

netty46,

Unfortunately your throwing a chemo regimen without specifics is pretty arbitrary.

You don't have anything about your cancer diagnosis: type, how big, stage, grade, nodes, hormone stats,

whether you had surgery and if so, what kind

whether you had radiation

whether you have been taking Tamoxifen or an AI

@Wildrumara & Proudtospin:



Thanks for chiming in. My wife had a very professionally conducted, patient specific RO consult with the 1st Rad Onc, then the complete opposite at our 2nd opinion.



Both ROs were on the fence. One leaned "no rads" the other leaned "yes".



My wife saw our MO yesterday and he was livid with how the 2nd RO consult went. He was very upset for us. And not because that RO would radiate---but HOW poorly the consult was conducted more than anything.



Basically, 1 RO, 2 MOs and the BS lean "no" to rads and 1 RO and his glaringly incompetent resident lackey lean "yes".



The people we trust who know my wife's specific case well and who treat her like an individual human being say "no" and an RO who showed up for 15 minutes an hour and a half after our appointment with him was to start (and he gave me no indication he knows my wife's case and wasn't just seeing "1 node + 41 years old") says he would radiate, though he admits the potential benefit is small and some people don't do it.



I'm trying to let FACTS and not FEAR guide us.



The guy who thinks my wife's risk without rads would be 10-20% with her being on the better end of that says do rads to lower risk to below 5%.



The RO and MO who say my wife's risk without rads is 5-15% with her being on the best end of that lean against rads as they might lower risk by as little as 1%, maybe 3%.



Who's stats to believe? The guy who sent an incompetent resident in to maul us for an hour and who gave no indication he spent any of his own time learning about my wife OR the doctors we trust who treat my wife like an individual?

Colt, Stories of hope are always good so I'll share that a friend of mine was diagnosed over 12 years ago at 36 with triple negative breast cancer and positive nodes (worse prognosis than your wife's).  The doctors threw everything they had at it due to all those factors and she has remained disease free all this time and her and her husband are planning on growing old together.  You obviously love your wife and this stranger prays you and your wife grow old together too.