ER/PR-, Her2+ Recurrence Rates

My breast health doc said that Herceptin alone cut recurrence rates in HALF.  (I had exactly the same anxiety attack as you a few weeks back after some uncontrolled Googling).  Chemo adds another reduction of 5-10%.  Remember too, that statistics include people who keep smoking, don't change their diets or their lifestyles.  Herceptin is also very new, so alot of statistical data doesn't include it , or only includes clinical trials that were done on Stage IV patients alone.  This is what the lovely HER2 forum ladies told me 2 weeks back when I was shaking from a panic attack  (I am only 31 and the online data for me was very upsetting).   Keep positive, we'll make it through.  HUG.

Jaimieh, I think you got the studies crossed-up but the number is correct. An MD Anderson study looked at recurrence for small tumors without chemo and the BCIRG 006 study tested TCH vs AC-TH and AC-T.

The MD Anderson retrospective study that determined that the risk of recurrence was quite high for HER2+ even when node negative with tumors less than 1 cm. They looked 5-year recurrence for women diagnosed between 1990 and 2002 with node negative tumors less than 1 cm and checked the tumor blocks that they keep to determine HER2+ status. For the women with HER2+ tumors they found that 23% had recurrences. Even more worrisome, about 15% had distant recurrences (i.e. mets). I've also seen a post here with graphs showing recurrence around 30% for tumors between 0.5 and 1 cm.

In the BCIRG 006 drug trial, they reported the recurrence rate for the node negative participants. after 4 years, In the TCH arm, 7% had recurrences. Most of the recurrences happened between 1 year and 3 years after treatment. After 3 years, the disease free survival line becomes pretty flat (i.e. there are very few recurrences after that). That is really impressive since the trial required that women with node negative disease have a tumor greater than 1 cm to participate

Shadow, you might ask your onc where he got the 20% number. The 30% for recurrence without chemo sounds about right - maybe a bit low. The 20% for recurrence after TCH sounds much too high. About 2/3 of the women in BCIRG 006 were node positive. More than half had tumors over 2 cm and 5% were over 5 cm. For the whole group, recurrence was 18% at 4 years and it looks like the curve could hit 20% by 5 years. Perhaps your onc is looking at numbers that include node positive women for the recurrence after chemo. 

Since you are node negative, I think your recurrence risk would be about 7%. Perhaps a bit less because your tumor size is at the low end of the range that was included in the BCIRG 006 clinical trial.

Thanks Bluedasher.  I just knew that it was closer to 7% (thanks to you ).

Shadow-

One important lesson I have learned is that most oncologist won't promise anything when it comes to cancer and that's just the way it is.  I have come to accept that fact.     

I have read from several sources and have been told that chemo is supposed to reduce the risk of recurrence by 1/3 (33%) . I noticed that you were a grade 3 and chemo works best with the higher grades of cancer. I'm just using a risk of 25-30%(minus 1/3) doing chemo alone would cut the risk down to 17-20%.  Then Herceptin is supposed to lower that risk by another 1/2 so that would bring your risk down to 8-10%.  Plus you were node negative which is another favorable prognostic factor.

Don't let the fear of recurrence take over your life or it's not really living at all.  You have a little one who needs you to be strong. And most importantly live, love and enjoy each and everyday to their fullest.  Don't let cancer win by robing you of your happiness and enjoying life and most importantly "your little one".  Stay positive....remember the mind is very powerfull

GOD BLESS and HAPPY THANKSGIVING,

Liz

MaryEllen ... my heartfelt advice to you is: don't worry about statistics. Recurrence is a 100% or 0% thing. You either do, or don't. Knowing the averages is meaningless, as you will be in one group or the other.

Do everything you can to be in the 0% group. Exercise 45 mintues a day, 5-6 days a week. It has a more positive outcome on hormone negative/HER2 positive bc than other types (onc just told me this last week).

Lose any extra weight you may have.

Eat lots of fruits and veggies. Forget the supplements, they mostly do little good. Exceptions are acidophilus and calcium/Vit.D.

Purge the stress from your life. If there is a continuing source of stress, undertake a mitigation program: yoga, meditation, tai chi, etc.

Enjoy the life you are living. Knowing a statistic for recurrence will have no effect on whether or not it occurs, it will only mess with your mind.

Sue Med-

LOL LOL - just loved your post today!!

I especially like what LJ said, either you do or you don't recur.

My Onc asked me if I wanted to hear the stats, I said no. I don't need those numbers rattling around in my head. I figure if 1 in 8 get BC, and 80 percent of biopsies are benign, well, so far the stats have not done me any good.

Honestly, I guess at some point, I will have a recurrance, I am only 41 years old, I have another 40 years or so to go, I imagine there will be more cancer in my future. My goal is to get the beast tamed for now and then do everything I can to keep it gone for as long as possible.

Wow, I am not sure I realized I had that pessimistic view of my situation.

I have a book about "After Breast Cancer" and it talks alot about the constant fear of recurrance. I guess it helped me see that we are always going to have that fear and not all of us, hopefully very few of us will recur. So we have to make a decision on how to handle the inevitable fear.

How much of our lives are we willing to let cancer take, it has taken my boob, my hair and so much of my "normal" life. I will not let it take my ability to dream, make plans and have hope.

Suemed, pumpkin pie counts as a vegetable I think. At least I would count it.

MaryEllen, you're in such a new place ... it's so hard to not think of cancer, recurrence, etc.

Don't try to censor yourself, just reschedule the thoughts. Allow yourself a reasonable amount of time to dwell on it. Say, 20 minutes per day. Schedule it for a time when you don't have to worry about distractions. Not driving, maybe exercising, or having your morning coffee/tea. If you think of it later in the day, just tell yourself, no, I'll think about that at the scheduled time. It takes persistence, but you can put your mind on something else. Then, when the scheduled time arrives, think about the cancer and recurrence. If you find you don't need the whole 20 minutes, cut back to 15, then 10, then 5.

If that whole thing doesn't work, then just believe that as time passes, but especially as you complete different phases of treatment, and then live a number of months beyond the completion of all treatment, you do think of stuff less. It pops up, for sure. But no where near like it does now for you.

In my cohort (starting chemo Jan 08), one of our members is a second time survivor, one has had a recurrence, and one has just been diagnosed with mets. But most of us are doing very well, getting on with life, dealing with family members' cancers, etc. 

Life goes on.

"I have a question about recurrence - if the breast surgeon does a great job and removes all of your breast tissue, where does your recurrence recur?  Does the cancer move to distant places because there isn't any breast tissue left to attach to?  I took off the other breast, afraid that the cancer would come back to the "good breast".  I would think it would be better if it comes back to a breast area than somewhere else.  Where else is considered a "local recurrence"?"

It is generally accepted that distant recurrances happen because cancer cells may have the ability to circulate in the blood stream and lodge in organs and bones.

My own layperson's theory (I am a gardener  ) is that (from the stories I've heard), it may be possible that cancer cells can lie dormant.  What makes cancer "bloom" is largely unknown.

As far as local recurrances go....it is virtually impossible to remove all breast tissue from your torso...even if the surgeon scrapes your chest wall.  (All it takes is one cell to build a cancer colony.)

Follow on radiation is often used to reduce risk of local recurrance.  There is some data I've seen that suggests that radiation can also reduce risk of distant mets. 

tl

Brenda_R, I searched and could not find a reference to support it. As I said, it was something my oncologist mentioned to me recently. Could be I misinterpreted it slightly. He said something along the lines of "You exercise and take care of yourself, and eat right, and this is especially important in hormone negative bc's." I did find some support for low fat diet having a statistically higher impact in reducing recurrence in hormone negative bc. Perhaps that is what he meant.

Here are some links: http://breastcancer.about.com/od/riskfactorsindetail/a/exercise_bc.htm

http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=5&L3=6&L4=0&PID=&sid=130&cid=397 

ACS notes that there were comparatively fewer hormone negative women in the big study on exercise and recurrence, so it isn't necessarily true that they don't benefit from exercise:

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Exercise_Can_Improve_Breast_Cancer_Survival.asp 

Hi LJ!  I thought it was you (by your good advice and knowledge base)... now I'm sure by your recent post!  How are you???  Vegas was cool.. wish I'd been able to meet you, too.

LJ13-2, I found this article interesting.

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Exercise_Can_Improve_Breast_Cancer_Survival.asp

"We need to make sure women understand that survival rates for breast cancer are high regardless of whether women exercise or not. Women who are unable to be physically active should not feel that they are harming themselves, and women who do follow the physical activity guidelines have no guarantee against a recurrence " she said. "But that's true of every drug or intervention. "

I understand why exercise can help hormone postives, but not sure about it helping negs, other than overall fitness helping with co-morbidities.  I see that some stated it helps hormone negs, but don't state why.  Could be that it helps build up the immune system?

I'm just trying to understand why they state these things.

The following statement was written in one of the posts above: 

"People who have bi-lateral mastectomies...particularly people who have ER neg cancers, reduce their risk of recurrance and (subsequent) death significantly."

I am ER negative and the preceding statement is in direct opposition to what my medical oncologist (both local and at MD Anderson), my radiation oncologist and both of my surgical oncologists who I have consulted with have told me.  They are all recommending to me that I only have a unilateral mastectomy as removing my healthy breast does absolutely nothing to change my prognosis or risk of recurrence.  You can read my cancer history in my signature line below.  (BTW - I was diagnosed at age 45 and had BRCA gene testing which was negative.)

Hi guys, I hope you don't mind if I chime in. 

All my drs stated that the only difference is a few percent between lump+rads and bmx for recurrance and that it's the new cancer that is significant over a period of time.  1% additional risk per year for lump and rads.  Im considered ER positive but borderline at 25%.

As I understand it, there are two types of "recurrence" local and distant.  Local refers to a recurrance of the same cancer in the same breast - risk reduction includes mastectomy with or without rads  or lumpectomy with rads.  Distant reccurence refers to metastasis of the original cancer to another part of the body, e.g., bone, liver, lung.  risk reduction is primarily chemo.  Bisphosphanates(zometa) has been shown to decrease bone mets.  There is a clinical trial currently in progress (and still looking for people) that is comparing three bisphosphanates to see if one works better than the others,

LJ13-2: Thanks for your inspiring words.  I think devoting a limited amout of time to cancer each day is a great idea...give it audience, then put it away.    Am still looking forward to the day I haven't thought about it at all.