If you were stage I, did you get chemo???

Our stats are similiar.  I was grade 2.  42 at dx.  I took the oncotype test and got a 15 and was told chemo was not for me.  I was happy about that!  Good luck Monday!

Hey Maria,

Here's bits of my story, maybe it will help you in your decisions:  

My mom had her mx while she was still teaching Jr High back in the 80's. Her students asked the substitute teacher, "what's wrong with Mrs P?" The sub said "she had a tumor removed". The kids said "where was the tumor?" and the sub said "on her body." and they were satisfied with that. 

I had my first mastectomies when my son was 4 and we did not tell him much... All he knew was that mommy had to visit the hospital for a few days...but then Nana was coming to visit!!! (I kept the focus on the positive aspects) Nana drove us to his kindergarten screening because I still had the lovely DRAINS under my shirt and wasn't allowed to drive yet.... 6 months later I had my implant surgery and my son exhibited some anxiety (didn't want to go to school) but quickly recovered. Maybe I should have had Nana come back as a distraction....!

When I had my recurrence( and chemo), he was 11 so we explained everything. I asked him to cut my hair off when it was falling out; that was fun! He also made jello for me when I was sick, and we went to a cancer walk and I think he enjoyed being seen as a caregiver. He saw a few minutes of a couple of the chemo infusions (then Dad would take him to the science museum) but I don't think I would have let him come to the chemo clinic as a 4 year old.

I think if I had to do chemo with a young child at home, I would explain it as funny medicine that will make your hair fall out....but mommy has to take it for a short time because the doctor said so. Just like sometimes kids have to have shots that might hurt for a short time. I wouldn't try to paint the big cancer picture for a 4 year old.

If you are a praying family, I would ask the young child to remember to pray for you, just like you pray for him when he's sick. 

Regarding chemo for Stage I, maybe some stage I gals will weigh with their experience.

I would do the chemo if it's recommended by an onc. that you trust. If you don't trust your onc, find another one.  When I first was dx, I was only stage 0 and had no chemo or rads. 6 years later it came back in a worse form. Now I travel 3 hours to go to my new onc, but to me, she's worth it!

Hang in there, hope this helps in a small way.  Hugs to the little one from me!!

Sue 

I did not have chemo.My ONC told me since my tumor's were small that chemo was not reccommended.I had 2 invasive tumors in my left breast and DCIS in my right. My tumors were just under 1cm.I had bilateral mastectomy and a month later oophrectomy.I could not take the tamoxifen that was reccommended because of blood clotting disorders I have.

So my only treatment was bilateral mx and oophrectomy.

Hope this helps.

Dee

I was a stage 1, but grade 3 and her2+.  The tumor was 1.7 cm and no lymph node involvement but I opted for bilateral mastectomy (because I didn't want to ever go through it again and I wanted them to match!) and reconstruction (I was not a candidate for lumpectomy).  I assumed I would not have to have chemo and was completely surprised at my oncology appointment when he suggested TCH X 6.  The deciding factor? I was 38 years old and a grade 3 her2+ tumor.  I finished chemo 7/22/10 and while it wasn't fun I am glad I did it because I want to feel like I have done everything I possibly can to kill the cancer. 

MarieKelly, quick question the Ki-67 what is considered a good %?

I did decide to do chemo, it was suggested it was a good idea because of my age but it was left up to me. For me the SE's were so bad my BS said no way would he allow me to continue. I am 57, and if I had it to do over I would seek out a 2nd opinion. My new Onc. said if I had come to him first he would never have suggested I do chemo with my path report.

mdg - i was 43 at diagnosis with similar stats to yours except in the end it turned out I was HER2+. Even before we knew I was HER2+ 2 different oncs recommended chemo because of my age and health. Basically they said I was young and healthy and thought it was a good preventative measure that I would be able to tolerate well. I did actually have the oncotype test and it came back low intermediate so I was really struggling with the decision before HER2 made it for me. I ended up doing TCx4 with the H and I tolerated it very well. I had no real problems at all. Just felt a little 'weird' for a couple of days. I also did the cold caps which allowed me to keep my hair so I really didn't tell many people what was going on and since I looked normal nobody knew.

Once you have all of your information in (onco score) you will have to make a decision that will make you comfortable in the long run.

Kira -

The higher the percent Ki-67, the greater the risk of an adverse outcome.

<10% = favorable

10%-20% = borderline

>20% = unfavorable

Hi, I didn't have chemo in 07 as the fish test for her2neu was inconclusive. I was hormone neg.  SO I took the standard treatment of a lumpectomy and radiation (probably 33 treatments).  I had DCIS with an invasive component, very small, stage 1.  BUT it came back in the same breast in less than 2 yrs.  This time a different test showed I was her2 positive so I underwent chemo after masectomy surgery. It was caught early, again stage 1. Ask lots of questions.  Chemo was REALLY hard on my body; I had radiation recall and was really sick a year ago.  Glad its behind me.  I'll ask the Lord to give you wisdom and discernment as you make this decision.  Then peace about the direction you choose.  Just be honest with your child and don't fear the sharing.  People, even little people can be your best supporters!   I know as I had a 4 yr old neice who was my prayer warrior.

I was 38 years old when diagnosed and had stage I. I also had 100% ER/PR. I never had an option. I mean from the beginning all the docs said that I needed chemo. Pretty much cause of my age I guess. Was supposed to have 6x FEC, but after the 3rd refused chemo unless I could switch to CMF (was scared of heart problems). They agreed. I'm overseas and really surprised to read that I probably wouldn't have gotten chemo if I was in the states...

Peace, Jen

MDG,

I was 47 when I was diagnosed, and my tumor was a bit larger than yours, but otherwise very similar stats. My son was 9 at the time. I remember the chemo decision and discussion to be the most stressful part of the whole BC experience. My onc was pushing for chemo, even after my Oncotype came back in the "low" range.  I really wanted to avoid chemo as nausea is an issue for me. So in the end, my onc agreed with the no chemo. But it was a struggle. 

The Oncotype score will help with this decision. You also need to determine, for yourself, if you feel that chemo will benefit you. Apparently the chemo regimens today are much better than they were in the past, and the anti-nausea drugs are much better. So most people get through it okay.

Good luck with this decision.

MDG, 

I was 42 at diagnosis, ER/PR and HER2+, 1.9cm grade 3 IDC/DCIS. Initially I was told hormone therapy only (edited to add:) after Herceptin, because I opted for a bilateral (BC in both sides), that changed when my Oncotype came back at 50. I ended up doing 4x dd a/c and 12 taxol/herceptin. Chemo only came into the picture when the Oncotype score came back so high.

I pray your score comes in low and you do not have to do the chemo.

Best Wishes... 

mdg - The thing to know about the Onco score is that if your score is very low, it's actually bad to have the chemo.  That is, the chemo may actually have a negative impact on your long-term outcome.  Your age, etc don't matter so much if your score is really low or high. So it's good that you are getting the test.  Hope you can avoid chemo, but if you can't - I had it and you will get through it.

I believe the Oncotype is showing that grade of tumor doesn't always factor into chemo.  For instance, my grade 3 was far less horrible than they imagined (12 Oncotype, which usually doesn't jive with grade 3) and grade 1s can be intermediate risk scores.  I believe your Onoctype in your case will tell all.

Age is also a factor according to my hospital--you'll find conflicting stories on this, even here (Toni30, for instance).  It is important to remember that the vast resources and studies out there are mostly about the over-40 set.  Take a look at Young Survivors, that is some pretty chilling stuff--a lot of study is needed in younger, pre-menopausal patients (not just those under 40).  I think this points to the real lack of absolutes in this game.  I was under 40 at diagnosis.  They like to bring out the big guns in that case, as they did in mine. I might not have had chemo if I'd been grade 1. At the NCI ranked institutions, grade 3 still means chemo.  They are often uncomfortable with Oncotype in the grade 3 environment, given they are the most aggressive cancers (though, I do believe the Oncotype will eventually change the entire staging arena for ER+ patients).

Some will tell you to "hit it hard". I think they just don't know a lot about what works precisely, and what doesn't, so in a young patient, they tend to throw the book at it.

I was diagnosed in 2007 at age 57.  Because my tumor was grade 3, and my oncotype was 27, I chose to have chemo.  I did TCx4.  I worked while I was having chemo.  I had to take a couple days off each cycle, but I was able to get through it.  When your oncotype is in the middle, it becomes a personal decision.  Do your research and be true to yourself.  I knew I would beat myself up if I didn't do chemo and had a recurrence.  I'm at peace with my decision.  Hang in there!

I think the bottom line is that there is no one, single characteristic that can predict whether or not someone with Stage I BC will benefit from chemo.

The Oncotype DX test has been a fantastic breakthrough, but it's not the only important variable.  I think many oncos still consider a person's age, tumor grade (perhaps because it doesn't always correlate with Oncotype score), general health, and the patient's feelings about risk.  As many others have said, there is still too much subjectivity in some of the testing; and there isn't enough known about Oncotype reliability among smaller groups of women (such as very young women).

The TAILORx Trial results should help, once they become available.  That will tell us whether chemo is beneficial in women with those pesky "middle-range" Oncotype scores (from 11 through 25, for the purposes of the study):  http://www.cancer.gov/newscenter/pressreleases/TAILORxRelease.

To answer the OP's question:  I was Stage I, and, yes, I did get chemo.  The factor that tipped the scale in my case was my Oncotype score of 26.  That score gave me a 17% risk of "distant recurrence" = mets without chemo but assuming I did have either tamoxifen or an aromatase inhibitor. Adding chemo to my treatment was estimated to cut my risk of mets by about 1/3, bringing my absolute risk of mets down to 17 - 5 = approx. 12%.

My onco also noted some other considerations, like the tumor grade ("2 is better than 3, but 1 would have been better still"); the size (1.8 cm = slightly below the cutoff for Stage 1 vs. Stage II); the fact that my tumor was PR negative (which also contributed to the higher Oncotype score); and my age.  "Huh?", I thought.  I figured 56 (55 at dx) was old; but he said it was still young enough to justify chemo.  A second oncologist said the same thing, so I went with it:  4 rounds of Taxotere/Cytoxan at 3-week intervals.

Three things helped me make the decision to go along with their recommendations.  First, if had enrolled in the TAILORx trial and my Oncotype score came back at 26, I'd be getting chemo automatically.  The cutoff for the random assignment of chemo-vs.-no chemo in that study was 25.  Second, the estimated benefit from chemo in terms of absolute decrease in risk of recurrence was 5 or 6%, which was higher than the estimated risks of any of the really bad long-term SE's from chemo.  (And the chemo I ended up getting -- T/C -- had less cardiac risk than what my original onco had proposed to use.)   Third, when I have a difficult decision to make, I imagine having already made the decision and then I see how the possible outcomes "feel".  In other words, I asked myself which would bring me the greatest regret:  declining chemo and then having a recurrence (possibly because I had declined chemo), or going ahead with chemo and having my cancer recur anyway?  For me, the worst would have been if I had decided not to have chemo (given all those factors arguing in its favor) and then I had a recurrence.

So, that was how I did it.  Now, as I near my 3-year post-dx mark and look back on the events of 2008, I have no regrets.  At least, none with respect to the decisions about my cancer treatment.  I can't say the same about everything I did that year; but, who can?

otter