In your 40's with low Oncotype score, what was your decision?
Comments
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Diana rose, to my reading that is where you could see the chemo line go above the no chemo line, that is going off the chart they give you on page 4 of the oncotype report they give node positives.
There are margin of error lines as well, it was more than 2 years ago, but it made sense to me that my onc was comfortable with 20, because I could see the space between the lines at 20.5.
I passed at 22, it is now becoming more common for intermediates to opt for no chemo, the new study is called rxponder.
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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.
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My oncotype score was 11. I chose no chemo and my medical onc said when he saw the 11 score, "Oh wow, lucky you, no chemo!"
I'm 47, very pre-menopausal still although tamoxifen may be altering that (STILL no hot flashes, WTF?), and the tumor was grade 3. The MO said 5 years ago he would have automatically put me on chemo and basically arent you glad you got this when you did so you could be tested to see if you needed chemo?
There is also zero genetic history of any kind of cancer on any side of my family.
Cheri
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Rguiff, have you switched to an AI or is your hormone treatment done?
NW
annicemd -
Hi guys. Just to give you an update. Finally decided not to do chemo. Oncotype 12. I started my tamoxifen yesterday
I'm still devating about ovarian suppression but might not do it either.
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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.
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Cookiegal- If I didn't have the dam 17 positive nodes I would have opted for no chemo with my onco score being a 6. I am doing CMF chemo and so far it is tolerable. I do 14 days on and 14 days off. The worst part about it is knowing after the 14 days of feeling no nausea and eating more and going to the bathroom on a regular basis is that it will start all over again. I am so looking forward to the middle of October when I will be done with it.
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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.
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bevin- they think the reason I had the positive nodes is because the cancer has been there for probably 7-10 yrs and because it was lobular it was never detected so it had a lot of years to travel. My surgeon order all my mammograms from many yrs ago and compared them. She said that when you look at all of them in a row for many yrs she could see the tissue getting denser each yr. When I had my mammograms they compared it to the previous yr so the changes were not that noticable. I did notice that breast had become heavier, but I thought it was a combination of age and gravity. Most of my cancer was microscopic, it is just that there was so much of it. I am glad now that I had the bmx and am doing the chemo incase the little shits went undected somewhere else. My new boobs are much better than the old ones and they are just with the TE's at this point. Will do the exchange in April or May next yr. I still have wonderful radiation to do after chemo. Best of luck to you.
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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!
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Hi Cowgirl,
I'm in Fountain Hills/Scottsdale, hello to a fellow Phoenician!
The 2% reduction is just that - only 2%. However, here's how I look at it. What are the odds that we were the ones that got breast cancer? I've never been sick a day in my life save for occasional cold and flu. No family history, poof, surprise, guess what you have? Percent chance that any of us should have gotten this is very low. So for me, a 2% chance is something I'm willing to risk for side effects, b/c I don't think I even had a 2% chance of getting cancer. So odds weren't in my favor there. So I fgure 2%, well, I'll take it.
That being said, I'm lucky and I know it - I have still had no side effects knock on wood. I'm 3 1/2 months out and nothing. But I also always exercised and still do (jazzercise dance aerobics) and I changed my diet to no white sugar no white bread no processed food of any kind, no caffeine, so maybe everything together is helping me with no side effects. Side effects are genetic - you may not metabolize the drug well, you may experience the side effect worse than the next person or not at all. If one person gets a side effect, it's reported.....and hence why you see 5 million things that can happen to you on your prescription label (I'm a pharmacist so this comes with the territory).
Most people don't get side effects - you hear from the people who do. Again percentages - most are 1 to 2 % chance of getting which means 98-99% of patients don't have them or don't get them to a horrible degree to where they have to stop the med. That is the exception not the norm. That's why I adamantly post on several threads "still side effect free" - I'm not gloating (trust me I'm happy about it!!!), but I want people to see yes, you don't always get side effects. Also with these meds side effects that do occur often abate within the first few months to a year, so it becomes a tolerability level question.
My 2 cents :-)
Cheri
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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
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Hi Cherilynn64,
Thanks so much for your response. Howdy right back at you. Unfortunately, I've met a lot of my neighbors on this site.
It's nice to hear that you have had no side effects. I guess you're right. We usually don't hear from those who don't suffer the SEs. It's just that list of possible SEs was HUGE and scary! I'm really active too and have tried to manage my diet a lot better since my diagnosis. No white sugars, very little red meats, but I still need my coffee.
This truely is an individual decision. I am so concerned because I don't tolerate meds well. I had a nice chat with my pharmacist last night and she said "between friends, I would skip the Arimidex". LOL!!! I had no node involvement and my PET scan was clean. So I may try the Arimidex to see if I can power thru the SEs. If not, I may just stop and get on with life.
Thanks again.
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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.
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Hi mary,
Quick question for you, what do you mean about if you had no vascular invasion it could be sneeky and be down further afield? I'm confused by that and want to understand better. Thanks for your help!
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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
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bevin: the first breast surgeon I saw commented on the fact that sometimes the cancer cells migrate from the breast to elsewhere in the body without leaving any detectable traces in the lymph nodes. If someone has a clean lymph node dissection, does not autmatically mean some cancer haven't migrated elsewhere. It's less likely but possible. Otherwise oncologists would not be prescribing chemo for the many women who have no lymph node involvement. Radiation is used to nix any cells remaining at the site of surgery and adjuvant chemo is used to get any stray cells elsewhere
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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.
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Thank you Anicemd and MaryNY,
I take my meds religiously too, it's amazing what I still have to learn about this disease. thanks for the explanations!
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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
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Hello everyone. My Onco score was 19. However, both my ER/PR receptors are 99%. So, oncologist feels tamoxifen will be the key (with radiation of course). No chemo for me. Being so highly hormone receptive he feels pushes me more or less in the low risk category. He would not do chemo for me if I wanted him to. I kept thinking just do chemo for one more layer of protection. The benefit was only 2-3% and not worth it he thought.
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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 -
Belinda, your stats on your cancer are almost identical to mine. Only difference is my tumor was grade 3 but my oncotype was 11. I had 1.5cm, both IDC and DCIS too, and my ER and PR are both almost 100% as well. My MO said best route was tamoxifen since I'm premenopausal and so high er pr positive. I had no lymphovascularization. I had lumpectomy then internal radiation then tamoxifen. If it recurs God forbid, I would have a double mastectomy and chemo if they then felt that was the best course. But with the stats you and I have, usually chemo does not offer benefit.
Good luck with the rest of your treatment!
Cheri
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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 -
For clarification purposes, especially to the newbies (I was once one, too)--
Regarding the comment: "If it recurs God forbid, I would have a double mastectomy and chemo if they then felt that was the best course."
There are two kinds of recurrence. Local, which would be treated well by the above, and distant, otherwise known as mets. Mets are deadly. As my doctor put it when I asked why we couldn't treat should this come back as a distant recurrence, "Because it is terminal at that stage." This is why the treatments are still so aggressive. Science just hasn't figured out who exactly will get those stinky mets.
In my case, the grade 3 and LVI on initial biopsy (none on final biopsy) combined with my stupidly young age (39) at diagnosis pushed me to chemo even with a score of 12. I know it probably wasn't necessary, but I couldn't be completely assured of that.
Two years out, I don't regret anything I did. I'm doing fantastically, nothing has really changed other than a calmer state of mind and a larger lust for life. I am in menopause, we won't know until I come off Tamox if it is truly permanent. That was devastating at first, but I also understand menopause is thought to be a huge factor in keeping young women cancer-free.
I just wanted to clarify, not to contradict, but rather to clarify for folks like myself who didn't really understand the nuances at time of diagnosis and treatment choices. It all happens so fast.
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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
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Ltothek, I am sure you made the right decision re chemo, your age plus grade 3 and ?LVI makes all the difference in the decision. You are right once mets happen its a different ball game. But we need to follow a treatment plan that is finely tunes for our individual risk profile to prevent recurrence without inducing undue risk from the treatment, so it can be a fine line!
cheri, just to let you know I thought long and hard about having a PET scan. the likelihood of it showing mets at this stage after early stage BC is minimal. However PET scans can often pick up other things incidentally which may not be clinically relevant. I have noticed a lot of women on this site who have had micro papillary thyroid cancer diagnosed at PET scan. This is my specialty and this is a 100 curable cancer which may actually NOT need treatment! It is always treated at the moment because its emotive. But give it ten years and we may leave them alone. Thats a bit controversial but i just wanted to to warn you that PET scans can pick up what we call in the medical world "incidentalomas", and with ESBC you are more likely to pick up an incidentalomas that a met. Also PETCT gives a massive radiation dose. So I have said no to a PET for the time being as I am well!
(((hugs))) -
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!
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I just want to thank you nice people for affirming my chemo choice! I think only BC patients could offer this kind of intimate opinion and have it mean what it does to me. Hopefully, someday we'll know for sure about the choices we make. In the meantime, I deeply appreciate the risk to say what you thought.
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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
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