Is it realistic to think you'll never get a recurrence?

chrissyb

My SIL was dx 35 years ago.......she had a double mastectomy with no other treatment.  She is now 69 and living strong with no recurrence.   I on the other had was dx'd 10 years ago and found I had gone stage IV at the five year mark.   According to my doc I am defying the odds as the type, grade and stage as well as no nodes indicated that it should never return.......yeah right!

I don't think it matters what your docs say nor does it matter what these so called predictors say it comes down to the luck of the draw so to speak........you do what you need to when you are dx'd and then you live life to the fullest, love, laugh and explore new avenues of life and try to forget about cancer.  

It doesn't matter what stage you are dx'd with there is always a possibility that it will come back but the probability of that happening, for most, is very small.

Just my two cents worth.

Love n hugs.   Chrissy

ziggypop

"You do what you need to when you are dx'd and then you live life to the fullest, love, laugh and explore new avenues of life and try to forget about cancer. " 

I am going to shorten that a bit: 

Do what you need to do, then live life to the fullest, love, laugh, and explore new avenues of life. 

This is going on my wall - best prescription ever. Thank you, Chrissy. I don't want to give my life to cancer - I have done a lot to make sure that it does not take my life, so I certainly don't want the worrying about it to take my life. 

jgbartlett

Thank you, those stories are really encouraging. I thank everyone who has taken the time to post, it certainly made me feel better about my future ..... And then a BC specialist on tele (who is developing a vaccine to minimize recurrence, and has had positive initial trials) reminds me that currently 30% of BC patients recur. I'm almost at 3 years post initial diagnosis, maybe at 5 years I'll feel I can breathe.

Julie 

barbe1958

Julie, I've also been quoted that 30% recurrence rate. Especially in the early stages/grades which aren't as aggressively treated as the later stages/grades. I'm putting both those terms together as so many here don't realize the complete difference between them!! Stage is just for treatment purposes and grade is just how fast the cancer is growing. That's it simplified. No other hocus pocus. Chemo works best on FAST growing breast cancer, it's wasted on grade one a lot. Thank goodness the oncotype test has come out to save some women a waste of chemo!!

I was on these boards when Herceptin became prevalent. Before that, women with HER+ felt they were "doomed to die" and then along came the magic bullet. So those of us who are HER-, with ER+ (tend to be slower growing breast cancers) and don't get the "kitchen sink" thrown at them are in a pretty vulnerable spot. That's why recurrences are showing up in earlier staged patients. (I've seen DCIS stage 0 go on to stage IV in a number of women here, sadly some have passed.) 

"They" are still "running for the cure" so I guess there isn't one yet. But there isn't a cure for life in the first place!!!! No one is getting out of here alive.....  I think being smart about your body and not ignoring symptoms is the best thing you can do. If you obsess over it right now, so what, that too will pass. Our bodies let us down in the first place, there is little trust there for a while.

As for will I recur? I got "it" in the first place didn't I?

momand2kids

Generally,

I choose to think it won't come back---I did everything I could and that was medically recommended at the time.  Mine was a slow growing cancer.  I have always been in tune with my body, so when things feel funny and they last for  more than a month, I check them out.  

I know it COULD come back-- but at 5.5 years out, I am just choosing to think that it won't.  It does not take up alot of my headspace---sometimes I think about it and am astonished that it was me--it often feels like it was someone else!!!

All that said, IF it ever did come back, I am comforted by the idea that I would know exactly who to call and what to do. I think the hardest part for me was the beginning when I did not know anything.  There is truly power in the knowledge that I would just get on the phone and start setting things up. 

My life is the chaotic place it was before bc, and that is proof to me that I have moved on..... in a good way!!!  I hope you can make some peace with this.... it took me some time, but I think I am ok with it all now..... 

hugs

Nan54

My oncologist (considered one of the best at one of the top hospitals in the country) says a few things to me at every visit when I have my anxiety meltdowns:

- More than 80 percent of women survive their breast cancer diagnosis

- Your individual risk or recurrence is considered very low based on pathology and oncotype dx

- Treatments are getting better all the time

- Worry is natural, but is also very likely to be unnecessary 

That 30 percent stat might be a little high too. There is an entire thread dedicated to that somewhere on this site. I think it's more like 20-30 (with 30 being a likely over-estimate). Not that any of this matters, of course, because it is either 0 or 100 percent for all of us. But, I like to think that every day between me and this monster (and I haven't had many yet) is a win. And I pray that the medical experts and scientists continue to make some progress every day!

bertilda

a large pea size lump above my incision line needs biopsy, anyone had this, dble mast. 1.5 years ago

edwards750

My sister in law has DCIS and is 5 years out doing fine. I didn't think there were that many women who had DCIS whose BC catapulted to a Stage IV. Of course I am sure it happens and has happened but I believe it is a small minority of women.  As for early stagers like myself, Stage II, Grade 1, I certainly have accepted its a crap shoot but I am at least comforted and optimistic by the results from my Oncotype test. I don't have the sense of dread nor am I Pollyanna. There are a lot of good reasons to be encouraged about the progress of research and treatment of BC. Bottom line is we can feel sorry for ourselves...or not. I choose not. Diane

bertilda

I dont feel sorry for myself, was just questioning about a lump post Invasive ductal carcinoma.  Thanks for your support.

d

ziggypop

Hey bertilda- I don't think edwards was responding to  your post - rather was just speaking to the general discussion of this thread. I'm really sorry you have this going on because it would be troubling to any one. You might want to start a topic because that way you will be likely to find women who have experienced what you're going through. ((hugs))

bertilda

I know, I am just anxious, and i did start a new topic about this.  Thank you

QuinnCat

Ruthbru - I'd say we were related based on your family cancer stories.  My grandfather had stomach cancer too, but in the 1920's (he was in his 40's when he died).  More pertinent to this thread, my Aunt had a large BC tumor, had a radical mastectomy (early 1970's) while in her early 50's and died of an unrelated cancer 25 years later.

My gf was triple positive, multiple nodes, grade 3, and she's here 12 years later, cancer free.

ziggypop

bertilda - Of course you're anxious - any of us would be (I do know that sometimes these things turn out to be nothing more than scar tissue). Do you have an appointment soon to find out what is going on?

Blessings2011

My mom was dx'd with BC at the age of 60. She had a radical UMX, with no recon, no other treatment. No rads, no chemo, no meds. She died at the age of 88 from Parkinson's-related issues. Never had any recurrence of cancer for 28 years.

I was dx'd with BC at the age of 60. I had a BMX, with no rads, no chemo. The tumor was small and caught early. My MO says my risk of recurrence is less than 1%. However, I am on Femara, because, as she says, my risk is not ZERO %.

The reality is that some women do have recurrences. Sadly, that's happened to a few of my friends. But if I spend my time worrying about what MIGHT happen to me in the future, I will absolutely miss out on the good things that ARE happening to me today.

Beesie

Diane, you're right.  There aren't many women who've started with DCIS (as their complete primary diagnosis - not just a preliminary diagnosis from a biopsy) and who've then gone on to become Stage IV.  I've been on the board for 8 years and I can think of only one case.  Maybe there are a couple of others that I've missed or forgotten, but it is pretty rare.  The long-term survival rate for someone diagnosed with DCIS is 98% - 99% - and that includes all those who end up having an invasive recurrence (which is the only way that someone with DCIS can develop mets). 

The problem on this board is that we self-define our diagnoses, and too often the diagnosis lines that we see at the bottom of people's posts are not factually correct.  Pure DCIS is always Stage 0, yet there are lots of women on this board who state their diagnosis to be DCIS Stage I, or Stage II or Stage III.  If the stage is anything other than 0, then the diagnosis is not DCIS. In all likelihood the tumor included both DCIS and IDC - that's very common - but the IDC trumps the DCIS and therefore the diagnosis is considered IDC and the staging is based on the IDC. Or we see women talk about having had "invasive DCIS". Well, there is no such thing.  If it was invasive, then the diagnosis wasn't DCIS. Or we see comments made about someone having a diagnosis of DCIS and having treatments that include chemo and Herceptin.  That's another hint that the diagnosis isn't really DCIS, since neither of those treatments are prescribed to some who has only DCIS. (The exception being those who are in the DCIS Herceptin clinical trials.)

This board provides wonderful support and information to women who are newly diagnosed and going through treatment, but unfortunately there are a lot of posts with misinformation and so we have to be careful about believing everything we read.  Similarly, to take this back to the original topic of this thread, because this board provides great support, most women who come here for their initial diagnosis do come back should they ever develop a recurrence.  So we have lots of women on the board who have had recurrences, which makes it look like an recurrence is almost inevitable.  We just have to remember that all the women diagnosed years ago who haven't had a recurrence have no reason to come back to the board, so they aren't here.  There are a lot more women who haven't had recurrences than those who have had one.

ruthbru

Kam, based on your avatar, our pets might be related too....I have a cat who looks exactly like yours!

QuinnCat

Oh Ruthbru - I just lost that cat to FIP.  She was only 7 and it just came out of nowhere.  I'd love to see a picture of yours   Tuxedos, ofcourse, are the smartest of cats!  Funny thing, I also think our BC is similar.  I'm borderline PR- (5% IHC), right on the edge of negative in the Oncotyping, though I assume since you are Stage 2, your tumor was over 2 cm?  Your dx has always been on my radar given your date of dx.  If I recall correctly, you did not get an Oncotype score?  Do you happen to know your Ki67?

Edited to add - I see you did add a picture.  Nice kitty - looks like her fur is longer?

ruthbru

Sorry about your kitty. Mine's a he, Oreo. He and our other cat (Henry) were cell mates at the Humane Society. His hair is pretty short. I don't know how smart he is, but he sure is naughty!

Yup, a 4 cm tumor which came out of nowhere 6 months after a clear mammo. No Oncotype, that was back before Oncotype tests were routine. I was only mildly estrogen positive, plus grade 3, plus big size, so I would have 'wanted' chemo no matter what score I would have had anyway.

barbe1958

nan54, by your onc saying 80% of women "survive" breast cancer - in other words, die of something else - that validates at least the 20% of those who DO die of breast cancer!! Now, add on another 10% for those who do recur, but don't die of breast cancer, they get hit by a bus first so cause of death is actually a "personal injury" and NOT breast cancer and it's EASY to get to 30% recurrence!!!! He is handing us that figure on a plate!

I've always figured you have a 50% chance. You either recur or you don't. I don't bother putting my stats on my bottom line as you'll always get someone attacking you thinking their cancer is "worse" than yours....sadly true.

As Beesie says, (nice to see you picked up my term "trumped" from years ago!!) the ones who return, needy to this site due to a recurrence are who we hear from, not the ones who have moved on. BUT, there are those of us who have bonded with others on this site and sadly stayed to watch them move on to die from this cancer. Riverinerabbit is a DCIS women who recurred and passed on, that comes to mind quickly. But again, I'm with Beesie in that a lot of women think DCIS is worse than IDC (maybe because it has more letters?? Or were told IDC is more common??) and I've been on here for over 5 years trying to tell them that IDC trumps DCIS in treatment. I have Papillary Carcinoma and when it was in my stat line I got blasted that it wasn't really breast cancer as ignorant women (I use that term in the correct sense, not derogatory) mistook it for Papilloma which is just a benign lump. There was only ONE other woman in all of the 42,000 women on bco.org that had Papillary and I still talk to her. Even my surgical team was stumped. There was only ONE post in all of Google on ONE woman who had it!!!! So, we treated it like IDC which is how they treat it today.

But seriously folks, once you've been diagnosed with breast cancer, it would be pretty silly to get "blindsided" by a recurrence!!! For heavens sake, the marketing for the Run For The Cure races all over the world should be a BIG indication that there is NO cure for breast cancer!!! There is just treatment and treatment could be very successful until the day you die of something else. Just like someone with diabetes or heart disease, COPD or AIDS, they have to take medication until the die of something. What they die of may or may not be their presenting disease!!

Beesie

barbe, I looked at Riverinerabbit's history of posts.  Although her diagnosis line mentions that her diagnosis was DCIS, in fact she never mentioned DCIS once in any post she ever wrote.  And in several of her posts she noted that her initial diagnosis was Stage I. So it appears that she did not start with a diagnosis of Stage 0 DCIS. 

I've been trying to explain to people that IDC trumps DCIS since I joined this board 8 years ago. My diagnosis Is DCIS-Mi, and my 1mm of IDC trumps my 7+cm of DCIS; that's why I am Stage I and that's why unlike someone who has DCIS, I do have a risk of mets (a small risk, mind you).  So Barbe, I think maybe you picked up the word "trumped" from me. 

edwards750

Thanks ziggypop; I wasn't responding to her specific post at all. I would never challenge or discredit anyone's feelings for any reason. The fear factor is there and always will be for us. How can it not? I have to admit when I read a post from someone who defied the odds in a negative way it really scares me. There really is nothing - not stats or other's experiences and now not even time that will ever totally exempt us from a fear of recurrence. I thought at one time if I can just make it to the 5 year mark...now even that time frame isn't comforting. I have an oncologist appointment this Thursday and rest assured I am in full blown anxiety mode. I have accepted that will never change so I turn to prayer. Its the only thing I can be sure of. Not trying to come across like some religious zealot - trust me far from it - but for me it helps me especially during my darkest hours. diane

ziggypop

edwards - no problem, I know from reading many of your posts that there is no way that you would ever say something to discredit someone's feelings. Fear is a really hard thing; and if it's something that ends up interfering with our lives - then it's reasonable that we have to have a way of 'treating' it, because it becomes basically like a symptom of a disease (a dis - ease). Some people do it with therapy  and meds, some with meditation or yoga, if prayer works for you then that is a wonderful thing - people have been using it for a very long time, so it makes sense that it is something that works for them. I am not really a religious person at all, but I try to reapeat the serenity prayer to myself often because it just helps somehow.

barbe1958

Meditation, prayer, yoga, religion, reading, gardening, sports, crafts and even jobs are all ways to distract our minds and concentrate our thoughts on something specific. If you're entering data at work, you can't be thinking about breast cancer too hard....even gardening and crafts can "empty" your brain. I play silly little games on the computer that require focus to let my brain rest....

ruthbru

And exercise is a great way to focus the mind and body elsewhere; plus having the added benefits of making you look good, feel better & it is the number one non-medical thing we can do for ourselves that actually DOES reduce our risk of recurrence!!!!!!

barbe1958

HAHAHA, funny I didn't even mention exercise!!! hehehehe 

funthing42

Hi

I need hope.

I have had breast Ca 3 x. Stage 1 less than 1 cm both times. Estrogen+ progesterone- her 2-.

I was told her2 + Estrogen+ but Im currently on herceptin progesterone-

Chemotherapy also completed July this year.

Only 2 mos after its back, Now in the skin where breast once was.

Estrogen+ only

Is this a sure death sentence?

I was told it's 1 yr 5 yr 10 yr maybe before it reoccurs in other organs.

Because it's in the skin.

Then chemo again...........? Then a few months then death. ??????

They suggest more radiation now.

Please I just visited a Doc who stole my hope and courage.

Sometimes knowing sucks even when really no one knows.

sunny8

Nan5 , Do you know the link to the thread with the recurrence rates?

exbrnxgrl

Hi Nan,

I understand it's a shock to have a recurrence so quickly. No one, and I mean no one, can tell you how long you have or if/when mets to other areas will occur. If your onc is saying this to you, find a new onc. I was dx'ed with a bone met about six weeks after my bmx which staged me as IIB. I never even got to chemo. After rads to the bone met, now necrotic, I have been only on an AI. That was 3 1/2 years ago. I still work full time, travel, enjoy family and friends. I have my aches and pains at times, but have great QOL. My doctors have never put an expiration date on me and it's way too early in the game for yours to do so. By the way, there are many stage IV women who are living longer lives than any of us would have imagined. There is a lot of hope

Meow13

My 99 year old aunt will be 100 at the end of February and she told me that she stopped worrying about her BC coming back. She had a lump at age 60 and I think she had one recurrence she told me to not waste a minute worrying about mine. I just need to keep it on the back burner of my mind.

Anonymous

Just want to weigh in on recurrence. Apparently I'm considered "high risk", per my surgeon, MO, and the internet--+ nodes, etc etc. blah blah blah. That status was exactly the reason I chose every treatment including dose dense chemo, 10 year arimidex or longer if I get that much time, and full on rads and bmx: I wanted no regrets about taking on every way to kick *ss the first time. But as for those stats, they scare me. I have to tell myself that stats don't include diet choices, exercise, environmental exposure/avoidance like pesticides, parabens, weight/BMI, natural supplements, various combined conventional tx, and perhaps even tamoxifen and arimidex. I have to look at it this way, otherwise I'd be terrified a lot of the time. I figure my tx choices combined with other things I'm doing can only up my stats. That's my story and I'm sticking to it.

Claire in AZ