Stage 1-recurrance percentage % risk?

DXat32

I am almost 11 months post final chemo, and 3 months out from my last Herceptin. I am doing great but still worry on a daily basis about this beast rearing it's ugly head down the road.

My Onc said that I have a 10% chance of recurrance. However, with exercise and a good diet, this could be brought down to a 6-7% chance of recurrance.

What are the rest of you Stage 1 ladies hearing or heard from your Oncologists regarding % chance of recurrance? 

Thanks for any insight!

Nichole

Meow13

I have a 23 percent chance of distant reoccurance in 10 years. So far so good.

wrenn

I was told I had a 30% chance of recurrence. It would have been 20% if I had been able to complete chemo.

ml143333

With the BMX, tamoxifen for 10 years and chemo, my chances of recurrence are 11%.

Juliecc

With an Oncotype Dx score of 12, I was told 8% chance of recurrence within 10 years with Tamoxifen for 10 years.  I didn't do chemo or radiation.  Chemo might have given me about a 2% benefit but the risks would outweigh the benefits in my case.

smilinkar

With an oncotype of 14, mines a 9% chance of recurrence. I too am going to try harder to have a healthy lifestyle. More exercise and less pumpkin pie blizzards.

mdg

I was told 12% chance of recurrence without chemo and that chemo would reduce it a few more percentage points.  I am 4 years from dx now. I did do chemo.  I was a regular exerciser and healthy eater before diagnosis so obviously that didn't reduce my odds of getting BC.

LittleMelons

I was told that with my diagnosis my chance of recurrence within 5 years was 15%, but with radiation and anti-hormonal therapy (armidex) it would be reduced to between 5% and 8%.  That seems lower than some have been told.  But that was only for 5 years.  My oncologist did say the highest recurrence risk is in the first 3 to 5 years, and after 10 years less risk.  So far, so good, but with some scary moments along the way (lump near surgery scar, spots in liver). I am interested in what other Stage 1ers have been told about risk.  I didn't have the oncotype test.

mjjones453

At the age of 49, I was also diagnose at stage one, my Onco DX score was an 8. My recurrence score was very low. In February I am coming up on my 5 year anniversary.  I have had issues with Tamoxifen, Hot Flashes, Ovarian Cysts that had recently changed. I had to have a bilateral Salpingo Oopherectomy as they had to make sure that it wasn't Ovarian Cancer.  Recently My Dr. told me that I may just be on Tamoxifen 5 years.  He would revisit it after he went to some conferences. He wasn't sold on me doing the 10 years. I try not to think about cancer recurring, my Oncologist is very encouraging to me.  He told me that we would begin seeing him yearly after having my yearly Mammogram, or if I have any issues.  

coraleliz

mj- would love to know what info your MO brings back from his conference. I'm having so many gyn issues on tamoxifen that unless I get a hysterectomy/oph tamoxifen won't be an option for me. With the ovaries removed, an AI would be an option. Unfortunately, they have SEs too. Although, I'm stage 11, my oncotype was 4.

vbishop

Me?  Oncotype score of 9, taking Arimidex, drops the odds of recurrence to 7%.  My oncologist told me if recurrence occurs, it will not be local, as I had a BMX.  So...one year out, I do blood work every six months to see if anything changes.  Working on living my life without worrying when the other shoe will drop.  Not quite there yet, but I'm trying to not let cancer rule my life.

kimag

I was told I have around 3% recurrance risk... from what I read above it seems so low and I wonder now why ? I did ask few times about it when considering Tamoxifen, they said 3% without Tamo with tamo around 1.9%.....  anyone else with same or similar% or maybe some explanation?

farmerlucy

kimag - Did you have the oncotype dx done? Maybe they are basing it mostly on the DCIS.  I play games with myself and give myself phantom points for exercise, all in an effort to get that little number closer to the bottom end of the scale. I don't know if the doc realize how much we hang on those numbers and for that matter every little piece of info we can find about our diagnosis. Maybe someday I'll let go of all that. Maybe. Someday. 

Annette47

Kimag - it might depend on the size of your invasive portion.   Mine was very tiny, and my risk of distant recurrence (i.e. mets) was thought to be less than 5% (probably more like 1-2%), but because I had a lumpectomy, my risk of local recurrence prior to rads and tamoxifen was more like 30%.   If I had the BMX like you did, my local recurrence risk would have been down to the 1-2% range as well, so if your invasive part was small enough, that might explain why your recurrence risk is so low.

kimag

Farmerlucy - no I did not have Oncotype as invasive part was too small... I have started discussion at the time to see what others say about their experience with size and testing.  I wish I had it done but then I will most like have had larger tumor so  it could be possible to test so as always there is another side of once's wish.. and you are very right we hang on to those numbers.... to add myself points though I still need to work on exercises part I eat more veggies and fruits almost no crap food but... I wonder when would I stop thinking about it all day wondering have I done well today, have I eaten well, move more, feel guilty when having nap instead of walk or exercises and terribly scared whenever I feel some ''new" pain... second guess myself if maybe I should try Tamo but then every cell in my body cries no - oh I will end up in the madhouse one day... 

Annette thanks a lot, your response helps a lot, yes it was small: 2.5mm one and second 0.5 mm so MO rounded it to 3 mm, I did have extensive DCIS both grade 2 and 3 and I was 'lucky' that the invasion came from grade 2 not 3,  I had very small margin only 0.4 mm and I was very concern about it but my surgeon said that since it is anterior margin it does not matter and all is fine. I had no other choice then mastectomy as I could not have any more radiation - got my lifetime in the past.

farmerlucy

kimag - I'm not saying you should try Tamoxifen AT ALL, but here is my experience. I tried it right after my diagnosis, and I was an absolutely crazy woman, also I made the mistake of starting Celexa the day before so that certainly didn't help. I slogged through ten days, and then quit for a whole year. The worst thing about that year was that I knew I wasn't doing all I could to prevent recurrence. Once things calmed down, and I found my zen again, I tried it again. This time I had the garden variety side effects which are quite manageable. With mostly DCIS you are certainly in a different position than me, but I just wanted to share that. Time is going to help with the scary thoughts. There are no shortcuts. We have to trudge through the mud field of the dx and acceptance of the diagnosis. It is very early for you right now. We're trudging alongside you BC sister. 

keepthefaith

There are a few websites that calculate your risk for recurrence, etc. I have a 21 onco score, did LX, chemo, rads and am on Tam; it calculated from a 13% for my onco with Tam,  then with other TX's to about 6-8%. Who knows how accurate it is...? I try not to stress about it and consider myself NED!!! Don't want to be a downer, but as far as I'm concerned, it's a crap shoot anyway...I had a hysterectomy, no HRT, ate fairly healthy, etc. Never thought I would have it in the first place. Just do the best you can, to improve your odds and don't rob yourself of today, by worrying about tomorrow. 

Blessings2011

Less than 1% risk of reduction here.

Multifocal DCIS and multifocal IDC, but IDC tumors were 1.5mm and 0.5mm, AND although they showed up in numerous biopsies, were missing in final path report after BMX.

So, tiny tumors, no node involvement, clean margins, no Oncotype test = no chemo, no rads, and 5 years prescribed AI.

First, I lost a lot of weight. That reduced my risk by 33%, bringing it to under 1%, then I went on Arimidex, then Femara, which further reduced my risk by 50%, bringing it to the 0.33% range. 

"BUT" - my MO said - "it's not zero. (Not possible.) As long as there is a risk I want you on AIs."

I gave it my best shot for two years but dangerous SEs convinced the MO to take me off completely.

Risk is still extremely low - less than 1% - but it's still there. 

And - I may be wrong -  I don't believe the type of surgery you have defines risk percentage.... in other words, BMX is really no better than lumpectomy with rads... it just happened to be the right choice for me.

So I'll remain vigilant, but not obsessed with recurrence. It's a crap shoot.

Annette47

Blessings - type of surgery doesn't affect chance of distant recurrence (ie mets) or survival but it does the chance of local recurrence just because with a lumpectomy & rads you still have a lot of remaining breast tissue for cancer to show up in, which is removed with a MX.    The reason survival isn't different is that most local recurrences are caught early due to the increased surveillance, so they don't have an effect on long-term survival rates.

Thinking about the exercise - risk reduction issue, I was exercising (I'm a runner) regularly for years before being diagnosed, so it didn't seem to help then, LOL.     I suppose if I were to stop, it might up my recurrence chances, but I'm not banking too heavily on it helping in my case as it didn't seem to help the first time around.

kimag

Annette - I see what you are saying - we kind of landed in the same stage even though me and exercises - we never like each other well, however you never know how big tumor might have been if not your exercises... they are very right saying no 2 BC cancer diagnosis are alike even if they seem to be identical.. I never exercised except running after my 3 boys and every day stuff, I promised myself I will try now for them, for me seeing them grow but... before I finish what I need to do around the house, is a nap time for youngest - means stay home no walking, he wakes up, again often not much time left before boys come back from school hungry like wolves so I need to make sure meal is ready... then it is getting late and I am tired and need to send the boys to bed, reading, talking and suddenly it is 9 pm! 

Thank you Ladies for sharing your experience, I found I feel lonely with this terrible stuff BC, my hubby is the best in the world but it seems he tries to forget about diagnosis, MO said I am fine, go home and enjoy your life, so my hubby took it like - you are cured for life, forget it , it never happened... so with all fears I am alone, he does not want to talk about it , he does not understand why I still think about it... he does not get it that with this being my 2nd cancer I am scared to death that I am not done with it.

Blessings2011

Sorry, Annette - you're right....  "Distant" vs "Local" ..... Knew that, but brain fog!

Nash54

kimag...same here.    Hubby thinks all is well but I'm worried when it will come back. Onc said dealing with the stress was worse than the disease.  I'm hoping in time that I won't be so consumed with BC and can get back to something resembling a normal life.  

angelia50

Nash54, you are so right. Just today, I was talking with my son and we were talking about a young man who had lukemia when he was about 6 years old and he's not in his late 20's and I said yes, that is a cancer that has a good cure rate, not like mine and he said but you don't have cancer, they got it all and I had to tell him again, they do not know that.  I did not have to have radiation or chemo and I don't think people really realize that nobody is sure its gone. I think they think I had surgery, its gone, done deal. It looms over my head like a dark cloud.

jessica749

My onc never gave me a stat but rather a range, and then demanded that I never 'quote" that for attribution. ;o)

So, I took from it all that stats can come back and bite you in the proverbial ….. that they are really not reliable, and not so relevant really. So my odds are 8%, or 18%, or in that range, before or after tamoxifen,  I never got it straight. And it doesn't really matter. It will come back, or it won't. And my onc has no idea if it will or not.  I know that makes no sense if you're not in the head for it, but I am. It will or it won't, and if it does, who knows when, and if it doesn't , I won't really know until it just keeps on not, so there's no choice but to let the worry - with time - go from front burner to back burner and try and appreciate and live life to its fullest, with fingers crossed that bc and every other potential calamity stays at bay.

So banal, I know. But true. Good luck arriving there.

Blessings2011

Aw, thanks, kayb - I wish I could say it was because I was so noble, and so profoundly dedicated to living a healthy life, but the truth is, I was just trying to weenie out of having the MO put me on AIs.

After BMX, I stood there and argued that because I was post-menopausal, AND post-hysterectomy, there was no estrogen anywhere in my body, so I didn't need any of THOSE drugs.

She very kindly said to me "Estrogen is produced in belly fat, even after menopause and hysterectomy."

And there I stood, all 205 pounds of me, with nothing to say. The next day I entered a medical weight loss program and eventually lost 60 pounds and 65 total inches.

I went back to see the MO (who was waiting til I got off the liquid fast to assess my medication needs) and showed her the results. She was SO happy! I was almost home free! Then she said, "Go pick up your Arimidex at the pharmacy on your way out." ARGGGHHH! So I did.

 

But I also looked at the diet and exercise plan as my breast cancer treatment, since I had not needed chemo or rads. I don't regret it at all, and in fact, I'd never felt as good as I did when the program ended.

Thank you for your kind words.

Meow13

I don't know what to think I was exercising treadmill everyday for 1 hour for over 2 years at my optimum weight and eating good food and drinking water. Bam diagnosed with bc. I still keep up the exercise but who knows cancer seems to like healthy bodies too.

PainterWoman

Would like to hear from you or anybody best/favorite exercise process.  Recently moved to New England, and will probably feel "challenged" when snows or freezes come... but prefer walking.  Is it important to go for high heart rate or longer time period (I'm definitely obese and out of shape, so either will happen pretty fast....).  What about strength training at home.  Not ready to face a Gym  (64, second BC.  1st was IDC. 2nd DCIS only.  Hoping to leverage simultaneous Tamoxifen AND Metformin to loose weight.  Fearing recurrence of joint pain.  Suggestions welcome.

Ridley

Painterwoman -- just wanted to chime in that if you like to walk and be outside, don't let the snow stop you (ice is a different story and last year was a pain for ice.)  I started walking outside year-round about 5 years ago, and love being out in the snow.   I found that once I had the right gear (lightweight but warm), the right boots, hats and gloves, the cold doesn't bother me.  In fact, I'm usually too warm once I've been out for an hour. 

Also -- if you like gadgets at all, and you don't have an electronic pedometer, think about getting one -- I have a fitbit and love it -- it definitely encourages me focus on getting steps in each day

April8

my MO said 10% with Herceptin but that percentage is based on old numbers-the percentage may be lower. Worries me too, particularly as I have so many treatments in front me, but I feel that it is the only solution and that I have to keep hoping that the researchers will keep finding solutions. Keep your spirits up-you are way ahead of the game!!

proudtospin

I am a gym person, joined one when I realized that north east snow and neuropathy in feet and hands said that outdoors for exercise would not work

but my gym is full of oldies like me, as one guy said to me, we are all broken here!  everyone has a reason to be there!  for me, I do strength training and lots of cardio

not all gyms are the same so check some out before you say no

Stenokim

I was oncotype 14, 9 percent chance of recurrence with tamoxifen, which I have no side effects.  MO said I could reduce it to 5 percent with exercise and eating right.  I exercise five days a week, weight lifting, and I jump rope, walking, dancing, hoola hooping, etc for the cardio.  I don't like routine, so I gotta mix it up!  I was in shape before dx, 5'0", 100 lbs.  now I'm 105 but a lot more muscle and one less boob.  I just had blood work done since I haven't had a period since starting tamoxifen in January.  I'm 48.  Blood work came back that I'm post menopausal!  Got through it without a single side effect, no hot flash or anything.  I credit the exercise and the apple and banana a day!