In your 40's with low Oncotype score, what was your decision?

I'm 51 now, was diagnosed 4 years ago  and was newly perimenopausal at the time.  Oncotype score came back as a 14.  I did 6 weeks of rads after a lumpectomy with SNB, and then tamoxifen for 3 years, which I just stopped 3 months ago.  I did not have chemo, nor was it even recommended, probably due to my being stage 1, grade 1.  I've changed my lifestyle to include exercise several times a week and added in a lot more fruits and vegetables, and cut out many of the bad carbs and fats.  I've been fine for the past 4 years.

Rguiff, have you switched to an AI or is your hormone treatment done?

NW

annicemd

Hi all,

Thank you for starting this thread and for relating your stories.  Indeed it is difficult to make the chemo/no chemo decision.  There are so many great comments here to heed.

I had my BMX less than 5 weeks ago but have been on pins and needles ever since waiting for my Oncotype test results.  First, somebody forgot to order the test, then when it was ordered, the insurance company screwed around for 2 weeks before approving it.  Like many of you, I have been playing the horrible waiting game since being diagnosed on 3/20.

Today I finally got some good news.  My Oncotype score came back a 3.  A THREE! I am so grateful not to have to make that difficult decision like many of you have had to do.  No chemo for me.

But, in the next breath my MO said he wanted me to take Arimidex for 5 years because my tumor was about 2.5CM.  After seeing all the side effects I wonder if the 2% reduction in mets chance is even worth it.  I have read the stories of so many people who suffer on Arimidex and Tamoxifen.  So now I need to make that decision.  Arimidex or no Arimidex.  Any advice is gladly accepted.  I am 60 years old yet still very confused.

Thanks again everyone.  This group is so, so helpful.  I hope those making their decisions rest easily and that everyone is getting better by the day.  Hugs.

Wow Dinarose, this then really makes me want to understand how onco score scores their tumor genes, if you with 17 positive nodes had a score 6, and me with zero of 5 nodes had a 11, it truly makes me wonder.. I'd have thought automatically your score would jump with the positive nodes.

Cherylann, I too was told 5 years ago, I would have automatically had chemo, but with Onco test, it was now up to me.  I could have it or with his support could decline. I decided to decline too.  I still wonder if thats the right decision.

Thanis Dianarose,

That makes sense and I'm sorry you'regoing through all this.  I agree though, Chemo, Id have done too.. just to get those buggers. 

Wishing you lots of healthy days ahead!

If I understand the whole onco thing correctly, one part predicts how well your cancer will respond to chemo (mine score was a 6) and the how likely it is to come back (my score was an 8). I was hesitant to even do chemo because of the 6 and my MO said I might be doing chemo for nothing, but with 17 positive nodes I had to do something.

Like Cherilynn said, the odds mean nothing to me because the odds were I shouldn't have gotten bc in the first place. I had 4 kids, nursed, never been over weight, eat right, and no family history. Chemo doesn't prevent us from getting it 5 yrs down the road, it only takes care of what we have now or might have been left behing. Those with clean margins and no positive nodes and a low score are in a much better positon then some of us. No matter what the decisions we all have to make are difficult and all stink. I wish all of you the best.

Diana

Dianarose: When you first had bc back in 2004, did they recommend tamoxifen?

Yes, chemo won't prevent you developing another tumor down the road, but it should get rid of any cancer cells circulating around the body and thus prevent local or distant mets. And those cancer cells are sneaky buggers. Even for those lucky enough to have no lymph node invasion, there is still no guarantee that the cells haven't gone further afield.

As for risk factors for breast cancer -- as one of the speakers said at a cancer survivors event I attended last week, the main risk factor is being a woman. About one in eight U.S. women (just under 12%) will develop invasive breast cancer over the course of her lifetime. As for family history -- I too believed the myth that most women with breast cancer have a family history of the disease. But the majority of women diagnosed with breast cancer do not have a family history of the disease.

My score was 20 ( 1.3 cm, Stage 1, Grade 1, no lymph node involvement, 55% ER+ / 45% PR + and HER2- ) ...13% rate of distant recurrence ..chemo would have lowered to 10%...in my research I'd read cases like mine didn't benefit from chemo so I decided against it...my score was right on that "edge"...my doctors agreed with my decision, to my relief....I finished rads 2 months ago and started Tamoxifen......stay strong my sisters

In the days before tamoxifen many women who were node negative and presumed clear would develop distant recurrence down the line and survival rates were poor. It's now known as the micrometastases that is characteristic of BC. I remember clearly several women I looked after a a junior doctor who had thought they were cured and then the monster came back, none survived. Thank goodness tamoxifen was discovered, pioneered at the cancer hospital (Christie Hosptial) here in Manchester where I did much of my training and where I am now a patient! Tamoxifen ensures that the micro metastases are destroyed. I take my tablet every day gratefully and thank God that I have BC now and not 30 years ago.

Dr Annice - hear hear, as much as it sucks having breast cancer of any stage and type, I am grateful that if I did have to get this that I got it in this day and age. And I pray that if any of us get a recurrence, and God I hope not, its when there's a cure and we won't have to go through all we have had to go through again.

I did not have chemo since my oncotype score was 11 and my ER and PR were almost both 100%, so my med onc felt my best shot for prevention of recurrence was tamoxifen and no chemo. I still have a PET scan to go in September, and I'm scared to death about what that will show, but there's nothing I can do at this point except keep taling tamoxifen and staying on my new no white sugar/white bread/caffeine/processed food diet. I've gotten rid of everything I know that has BPA, parebens, sodium laureth sulfate, phlalates, etc.....to further lessen my chances of recurrence. Hope it all works out.........

Cheri 

Belinda your oncologist sounds v sensible. Looking at all the factors, not just oncogenes is important so size of tumour, ER PR status, if there was lymphovascular invasion, etc are all important information. Without chemo the tamoxifen or AI depending on your menopause status is v important. chemo has many long term late effects including late blood cancers so is is not without it's own risk. Good luck with your decision

X

Hi Chery, I am sure your Pet scan will be fine? Remember the 'micromets' would not necessarily show so if clear tamoxifen is still v important. I am sure your healthy lifestyle and diet helps, I try to focus on this too.

BW

LtotheK,

 Thanks for spelling that out for everyone. Yes, I meant locally only as in recurrence in my other breast or same breast again. I had a tough time deciding after my diagosis of DCIS and IDC in Jan for lumpectomy or mastectomy....I finally went with lumpectomy and radiation and tamoxifen due to my age, genetic history, and lifestyle. Had I had a family history I would have had a mastectomy. If this occurs locally in the breast again, I will say take them both this time. 

Mets scare the crap out of me and no doubt everyone else. I agree with your decision for chemo due to your age for sure....I was 47 and considered young for breast cancer, so at only 39, yeah, sounds like it was the right decision. And if I had had a mid range oncotype score that was on the fence, I was going to do chemo due to the grade 3 and the KI of 22%. Sometimes I get up in the morning and wonder, should I have done chemo anyways? I reckon that decision is always going to be with us.

Thanks Annice - I hope it's negative. They drew blood and ran tumor markers back in March when they put me on tamoxifen, and those came out normal levels so I'm praying it stays that way. I'm in the process of moving out of state and it all hinges on waiting till Sept for this PET scan. I just dont' want to move and the first thing I get is a PET scan showing something and I have all new docs etc....so I'm waiting on that then will have the all clear to go.

Cheri 

Hi Ladies,

Thanks for the thread! I was trying to find a thread for Chemo, no Chemo decision.  I have battled this decision for over a week and finally made my decision this weekend.  No Chemo.  I am 43 and was Dx'd with ILC in April.  Stage 2, grade 2, 3 cm tumor, node negative, ER+,PR+, Her2neu. Right sided mastectomy in May and after more findings in right breast after Pathology looked at it, I will be having left breast removed in very near future as precaution.  

My Oncotype score came back 14.  Oncologist said after hormone therapy we are looking at 9.  Chemo would have only reduce by 2%.  My Oncology team, as well as an expert at UCSF they went consulted with, felt very comfortable if I chose no Chemo.  If we were looking at even a 5% reduction, my Oncologist said he'd be pushing it more in my case, but it is not.  I battled with it for awhile and finally felt that this was the best decision for me overall and with the backing of my doctors.  Too low risk reduction for the Chemo SE's and problems that could happen.  My system tends to be sensitive to meds and reactions.  Even though I am still a bit nervous and know the risk is always there, I feel good about my decision.  

My thoughts and prayers to all ladies here!  We don't want to be here, but we will get through this, taking it one step at a time!  

Butterfly - glad you found us!! Sad that you had to, but glad you are here with us :-)  And you sound like you made the right decision for you. It's the same one I made and I'm overall at peace with it. 

LtotheK - absolutely! I can't imagine someone coming on here and telling you you're crazy for doing chemo (they'd be crazy telling you that!). It's your decision however you can around to it. I literally almost flipped a freakin' coin to decide on lumpectomy vs mastectomy. It's what the results show you combined with what your gut tells you to do. I'm in a horrible personal mess that occurred 7 months before the cancer diagnosis that as me seeing a psychologist for the first time in my life. My gut was yelling at me like crazy for years, and I didn't listen. And I'm paying for it. When I got the cancer dx in Jan, I was like, God, really, you're kiddin right? But I prayed and listened to my gut this time....and I have been able to sleep. And that's how I gauge my decisions. If I can sleep at night, I made the right decision. So far with everything related to cancer, I'm sleeping fine. It's the other mess keeping me up, heh.

Doc Annice - you're an endocrinologist? I just got diagosed with hypothyroidism. It is the only thing aside from heart disease that runs in both sides of my family (whereas cancer doesn't exist except apparently with me). They have been suspecting it for the last 5 years since I started going to a doctor again after a 25 year lull (I was never sick, lucky me I know - till this year, then surprise! Cancer! Sheesh, you couldn't have just given me high blood pressure or something?  ) If you don't mind, I'll PM you for your opinion on this issue so we can keep the thread about the oncotype test. 

Cheri