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

jgbartlett

There are so many stories out there of recurrence after 2 years or 5 years or 12 years or 17 years. Is recurrence inevitable? Is there really any long term chance it will never come back?

Lily55

Shirley Temple died today after 42 years of being a breast cancer survivor, one of the horrors of cancer is we just never know........

leggo

As my very wise onc told me 18 years ago, "Lets hope like hell it doesn't come back". I got ten cancer-free years. 

LKSHER

This is exactly my question and I feel like I never get a straight answer from anyone.  I just want someone to say, "Yes, there is a definite good chance it will never ever come back."

Or

"You will most likely have cancer again.  The question is just when."

I understand why you are confused.

ziggypop

While there are many stories of recurrence,those are the stories that you are likely to hear - especially if you are 'attuned' to breast cancer - I remember after my diagnosis, thinking OMG it's everywhere, it was actually that I was more often in the place where 'it' was. The longest tracking studies are usually about 20 years, and the chances of recurrence drop pretty steeply after about 10 years. There are stats out there - moreso for survival than recurrence. You could try cancer math - just be sure that when you plug your info in, that your careful to look at the measurements they use (mm vs cm) .Also be sure to use the tool that allows you to enter former and current treatments. 

LRM216

I think that even if my onc would ever say to me - "it won't come back" - I wouldn't believe her anyway.  It wouldn't alleviate the always in the back of my mind feeling that it will always be lurking somewhere right behind me.  I think it's just another stinking thing that comes along with the horrendous diagnose of breast cancer.

elimar86861

I certainly hope so. 

Lily55

they drop steeply for  IDC but ILC more commonly comes back around the ten year mark 

leggo

It would be pretty irresponsible for an oncologist to say it won't come back. Until there's a cure.....

Beesie

"There are so many stories out there of recurrence after 2 years or 5 years or 12 years or 17 years."

On this website, there certainly are lots of those stories.  There probably are lots of them too in breast cancer support groups.  But that's because the women who have a recurrence need support and come back here or go to a support group, whereas all the women who don't have a recurrence usually are never heard from again. 

"Is recurrence inevitable?"  Absolutely not. 

"Is there really any long term chance it will never come back?" Absolutely.  But the odds of that happening - the odds that you will never have a recurrence - are specific to you.  So I could quote all sorts of general numbers that reflect what happens to all women who are diagnosed with breast cancer (most never have a recurrence) but that information wouldn't be meaningful to you.  Your diagnosis, the pathology of your cancer, and your treatment plan together determine your risk of recurrence.  

Looking at your earlier posts, I see that you are Stage IIA, with no positives nodes, an ER+ cancer and an HER2- cancer. Those are all favourable factors which would suggest that your risk of recurrence (either local or distant) is actually quite low - probably less than 20%.  As ziggypop suggested, you might want to plug your data into CancerMath to see what it projects: http://lifemath.net/cancer/breastcancer/therapy/index.php

Lily, you mentioned that "Shirley Temple died today after 42 years of being a breast cancer
survivor, one of the horrors of cancer is we just never know........"  Is there any reason to believe that Shirley Temple died of breast cancer?  The official word is "natural causes" and she was, after all, 85 years old. She was very public about her breast cancer diagnosis and MX, and I've never read anything to suggest that she ever had a recurrence.  Did I miss something?

MusicLover

I don't think that Shirley Temple died of breast cancer. 

Beesie says it best! 

Lily55

I didn´t say she died of breast cancer!

jgbartlett

Thanks ladies, for those of you who are so positive I don't know how you do it.

I have a busy life juggling work and kids, but late at night when they are in bed and it's quiet, the thoughts of cancer & it's return creep back into my mind. I think about it every night. I feel my boobs every night. I assess the aches and pains in my body every night. It's obsessive and I don't know how to make it stop.

hearmeroar

Cancer math says there is a 9.4% chance I'll die of BC in 15 years. I really like those odds. My rad onco seems to think there is a 20% - 30% chance mine could come back. Med onco says less than 20%. Who really knows!

mommy13

well thats depressing I got 52%

Holeinone

mommy, are you sure you did it correctly? My + node status is worse than yours, I do not remember it being that grim. Last time I did it, I got so Nervous, so I am  trying to stay off those statistical programs. 

I am guessing it takes a long time to relax and not be such a worry wart. Seems like it is a full time job right now...

juneping

very interesting topic...but i think the idea of recurrence will always hanging at the back of my mind. i won't look for it but sometimes i do think about it.

i did everything i could in my power and my discipline to change my life style, live a healthy and active (more active..i was more of a couch potato before BC) life style and hope for the best. try not think of anything stressful that's out of my control. 

someone wise on this board said if she'll die at a ripe old age of some natural course then those worrying is just a waste of time. if there's some recurrence and she died in a couple of years, all these worrying is even more wasteful. i really like the way she put it....make me feel very positive whenever i have that thought.

LauraLC

Can you give me a link to the stats showing ILC is more common to come back after 10 years?

ziggypop

mommy 13, I think that you may have pulled up the stats for if you did no treatment. I'm not sure of your age, but when I plug in your stats , I get a much, much, lower score. It is one of the dangers of using these programs - one false entry & the whole thing goes kaplooy. 

ziggypop

Yep - mommy, I just entered your stats & estimated an age of 50 years (with treatment)and got an 8% mortality rate over 5 years which is about 5% higher than the normal mortality rate for a woman 50 years of age. 

ruthbru

Well, everyone is either zero or 100%. Once you've done everything you can medically and lifestyle-wise, there is no use worrying about it. If it doesn't come back, you have wasting a lot of time and emotional energy worrying for nothing. If is does come back, then you better be out doing all the things you've always wanted to do NOW while you can.

edwards750

It is a waste of time to worry but for me its what I do best. I am the poster person for it. I made myself sick worrying before my annual mammograms, Mom had BC, and it has really intensified since as you would expect. I try not to look over my shoulder or dwell on the what ifs but it does take over my thoughts sometimes. We all know that just because those of us who have early stage BC have a higher "survival" rate that still comes with no guarantees. We all know women who lived the good life - healthy, etc., and still got the beast and likewise ones who didn't who don't. Frankly the powers that be in the BC community freely admit they really don't know why some women get it and others don't. That doesn't include those of us who have a genetic connection because some of us are predisposed to get it. I am not a fanatic about doing everything right but I do do my best. I don't think any of us can truthfully say a recurrence isn't in the back of our minds sometimes but it is something we just have to live with. You know play the hand you are dealt. Diane

ruthbru

Susie123

" Worry doesn't change what happens tomorrow, it only robs you of today"

I recently pinned that saying to remind me how true it is. It's very true, but also very hard to not have worry enter your mind at quiet times. One of the nurses at my cancer treatment center said she hates to hear patients use the term "I'm cancer free now". She said that once you have had invasive cancer there is no such thing. She said the term to use is "you are in remission". I know my odds are excellent, but, sometimes, in quiet times, I still hear her words. The Dr said there is no way to tell if you're cured. The only way to know for sure with invasive cancer is if you die of something else. For the most part, I try to do the things I want to do today, but still plan for a tomorrow.

mommy13

I did it a couple times... Same result. Mine is grade 3, her2+ and I'm 27

None of which is in my favor I guess

I swore I'd never do that test! Don't know why I did lol

Blah!

ruthbru

Well, my aunt had BC in the 1960s. She had a mastectomy but no further treatment (her only choice at the time), and she died a few years ago at the age of 88 after an unrelated illness. My grandfather had stomach cancer in the 1950s. They did surgery and sent him home to die....which he did....35 years later at the age of 93, with no recurrence. I think it is safe to say that they were both 'cured'.

mommy13

those are encouraging stories! thanks for sharing!

ziggypop

Mommy 13, are you sure that you are using the 'therapy calculator' under breast cancer in cancermath. The basic one does not take your chemo into account.

Since my diagnosis I have had 8 women who are in their late seventies to late eighties call me to tell me about their experiences (they are all women from the town I grew up in who knew me when I was a little girl). All of them were diagnosed over 25 years ago and that was long before the were finding many of the early stage cancers. They all are going strong and I don't expect that breast cancer will be what takes them. 

I know my 'odds' - and I plan on living a happy life and then dying in my sleep in my 90's. I had an aunt and every year she would plan the next 10 years of her life. She never got 'old' - she lived to be 88, but she never got 'old' - in the last three years of her life she traveled to China and India - by herself. I'm sure at 85 her 'odds' weren't all that good - but she didn't worry about it - she just kept on planning what she wanted to do. 

elimar86861

My great-grandma had BC way back in the day,  I don't know her Dx or what her treatment included, other than Mx.  She lived to 98.

I got 96% to live another 15 years on the Cancer Math.

ruthbru, I like your cartoon.

ruthbru

I'm thinking of another friend of mine, who was diagnosed as a young mother with 3 little children. She did her treatments, waited out the first high risk five years, and then promptly had two more babies. All five kids are now all grown up (the youngest being about 30 years old) & her oldest grandchild graduates from high school this year. I'm sure the thought of recurrence has receded to the very, very far back of her mind!!!!

sbelizabeth

My mom had her first mastectomy in her 60's, and the next one in her 70's.  Her chest is smooth and soft--looks like a little girl's--and she has no worries about being flat.  We just celebrated her 90th birthday.