Oncotype Dx score 19 chemo or no chemo?

Comments
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peachy-pie,
My score was a bit higher than yours at 24. I felt I wanted to hit it with everything first time around. As in your case I was given very little advice from my onc. which seems to be the case with those of us in the gray area. One thing to think about in your case is you age. You are very young with lots of years ahead of you. As many have said chemo isn't fun, but in most cases it is doable.
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Hi my score was 23. My BS was on the fence about this also. I had the mammaprint which
came back low risk and the oncotype 23. I finished 8tx I
of CMF and will start rads on the 6th. I went with the second Onco. S the first wanted to give me the hardest chemo. I asked my BS what should I do and he told me he couldn't answer that. But, he said to my husband...if you are being attacked would you want a 22 or a 45? That answered my ?. I was scared but to be honest it qas doable. This board has great people and share with each other good info. Take care, Patty -
Hi Peachy-Pie,
My Onco DX score was 28, and I chose not to do chemotherapy. My oncologist was not thrilled about my decision, but my genetic testing was all negative and I also had a double mastectomy. I am now taking Aromasin, but the biggest factor for me not doing Chemotherapy was the fact that I have horrible allergies, and also reactions to so many foods, medicines, etc. that my throat swells up inside to where I can't talk and have trouble swallowing and breathing. I just didn't want to take a chance on that happening with the chemo treatment.
Hope your genetic tests come back negative also. Best wishes!
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Howdy - mine was 19 also. My onc wouldn't even consider chemo. Now one year out I feel like I should have done it because I might be facing recurrence. That's just my personal feeling. 19 is a low number, and chemo is so difficult on the body - you just have to gather all the facts and make your decision. Tough to do when you're first diagnosed, your world is upside down....if you're a Believer, pray about it, you'll know what to do.
All the best, Tracye
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The thing that has me really scared about chemo, is the fact that my onc. wants to give me cyclophosphamide, which one of the side effects is getting cancer in another part of your body. I also have anaphylactic reactions to nuts and certain foods so with the chance of your esphopgus swelling and some other side effects, I am really leaning towards taking the small 12% risk to avoid chemo. I had my surgery, i've been through radiation and I feel so good right now. I am back to work and life seems pretty normal again. I just hate to start chemo if it's going to make me ill, and cause bad side effects. I however will feel the need to go through with it if my braca test comes back positive. And there is a good chance of that because my Great Aunt, Aunt and Cousin all had breast cancer. All on my Mom's side too. But if not, I just want to be sure I make the right choice. This is so difficult, and I really appreciate you sharing your stories with me, it helps me along.
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Peachy-pie - My score was 23, and I did CMF chemo. So many factors went into my decision. I was 44. My kids were pretty young, 9 and 11. If I had been post menopause, or say 65 with grandkids - chemo may have been easier for me to skip. But, at my age, and more importantly, the age of my kids - I decided that chemo was worth it. I am happy I did it, and it was not hard to get through.
It is interesting to see what all of us choose, but make sure you consider other aspects besides just the oncotype score that goes into personal decisions. A 45 year old and a 65 year old most likely would chose differently, based on age alone (and years to be exposed to estrogen, etc etc). Hopefully I'm making sense!
Good luck with this!
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Peachy:
I had an oncotype of 19 and a mammoprint of low risk so both me and my onc decided that chemo would not benefit me.
I had 2.3 cm ILC, stage 2, grade 2 0/2 nodes ER/PR+ HER-
our dx is quite the same but I had ILC and not IDC. Also, had DMX with TE's.
Started walking daily a year ago with training in weights with personal trainer. Also take Tamoxifen X5 yrs.
Good luck in your decision.
PS: I was 59 at date of DX.
Jan
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There's lots of info missing. For instance, how old are you? I was 39 at diagnosis, and with a grade 3, even though my Oncotype was only 12 my oncologist felt a. the Oncotype is not as well tested in younger women, and b. grade 3 is the most unpredictable cancer cell and the Tailor X trials are pending.
I sought two additional opinions, one from U of Chicago, one of the leading research institutes for breast cancer. I got yes, no and maybe. It just isn't a clean cut decision (and frankly, I'm a bit wary of any doctor who would say it is in my situation), but I can say with my profile, if I had had 19 I wouldn't have thought twice.
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thank you Aprilgirl1, I will have to keep that in mind. To be honest, I did not even consider my age while thinking about this. I just keeping thinking about the 88% chance it may never return.
I have 2 sons, ages 12 & 14, so that is something to definitely think about.
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They did my oncotype test twice and the scores came back 17 and then 18. With those scores I could have chosen not to have chemo, but for me it came down to being afraid I would regret it later. I had a lumpectomy with clear margins. Before I started treatment I asked for an MRI since my cancer had never shown on my 23 years of mammos. I wanted to check the other breast to see if anything was lurking. To everyone's surprise a second primary was found in another quandrant of the cancer breast. It was 90% dcis so the biopsy actually removed the whole thing, again with clear margins. So with that info,and my first tumor being rather large at 3.5 cm and grade 3, I opted for the chemo. I also had 35 rads. For me it was the right decision. I was lucky too in that I found the chemo very doable. Of course I don't know what I might have done to my body in the big picture. Right now I am battling recurring infections in the breast and everyone seems to think it is because I have a compromised lymphatic system from the rads. Who knew? I do not know what surprises I will face in the future, but at the time, I made the best decision for me. Remember it is an individual decision and you need to make the decision that makes you comfortable. Gather all the facts and then you will know. Good luck................Caren
I had the BRCA genetic testing and I was negative.
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My Oncotype came back a 22. My dx is similar to yours with a few differences. My MO says I'm Stage II, but I'm really Stage Ib. Sometimes I feel more researched then these doctors. He was recommending TAC for me, but when he saw that I wasn't going into chemo without all my answers he changed his mind and said TC. I'm BRCA- and my SN was negative, but two other nodes/tissue were positive.
I sit here crying because I was just measuring my hair before I saw your post. If chemo is my calling, then my beautiful locks are going to someone who will need them. I have a 13 year old boy, a 9 year old girl and I'm almost 47. If my 2nd opinion pathology says the same as my final path, that is probably the end of my research.
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Something else came to mind when you mentioned the 88% chance it will not return. That is a good number and I don't want to be doom and gloom, but we were also told that 80% of all tumors are benign. I'm just saying...................
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Peachy-pie, that is assuming you take and can tolerate Tamoxifen or an AI. Without Tamoxifen, your chance of return is more like 24%.
They just don't know exactly. I think it's really important to get at least a second opinion. I would recommend that to anyone, no matter what.
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my onc. told me I would definitely have to take the Tamoxifen for 5 yrs. So I would also have that on my side. I am 45 yrs old, I had IDC grade 2 and my nodes were all negative. My tumor was 2.2cm and my margins were clear. I guess I am thinking twice about chemo because sometimes it can cause more harm then good. The thought of it destroying all good cells in my body is beyond terrifying to me. I also work at a bank, and handling money and being susceptible to the germs also has me quite concerned. A woman that works for another branch of the bank I work for was diagnosed with IDC 15 yrs ago. She told me she had a lumpectomy, radiation and chemo and 15 yrs later it still returned. This time she had the braca test done, which came back positive, so she opted for a bilateral mastectomy hoping she will be done with it. I told her my situation and she said with a score of 19 she probably would opt out for the chemo, as it made her very ill and she was out of work for a few months. So it is something to consider, and I am going to take in the feedback I get here. Plus also take into consideration the results of my braca test and what my onc. and his assoc. suggest this coming week. Aetna sent me a booklet on the Oncotype DX test and it did state that people with lower scores may not even benefit from chemo and would do better with hormonal therapy. So another thought I have in my mind, is why put my body though that when it may not even benefit me? It's really confusing for me, and this is going to be a very difficult decision to make. But regardless, if my braca comes back positive, I will have my 4 rounds of chemo.
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Yes, that's true about 80% being b9 but remember that the women on this forum are for the most part the 20% who were not. There's little need for those who are b9 to be here! -Caryn
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Peachy-pie, I feel so much for your situation. I was there a little more than a year ago, and it's just plain excruciating. I think the truth is, the medical field just hasn't caught up to how wily this disease is, and it is very difficult to get clean answers. I can offer a few more things to think about.
Find out of you had lympho-vascular invasion or not. This is one of the criteria for chemo at my NCI ranked hospital.
Worry for lowered immunity during chemo isn't as much of a concern today with Neulasta. You can work right on through. I had a few days I felt bad, but I never picked up a cold or anything. They have drugs to manage white blood cell counts.
BRCA is actually a pretty rare gene. There is a great chance you will be negative!
Your friend's response to chemo 15 years ago is not comparable. Please don't use that as an arbiter. Also, you might not be on the same regimen.
There are many things they don't know yet about Oncotype and chemo, this is why the Tailor X trial is being conducted. Look into it. They are testing the intermediate range to see which patients do and don't need chemo.
The truth is with chemo, none of us knows for sure whether it's a benefit. I will never know. However, my third opinion said when I asked, "Why can't I just hit it again if it comes back?" Her response: "Because you need to understand that if it comes back, your treatment will in all likelihood be palliative." I would say that was the moment I decided "yes" to chemo.
You are Stage 2. I am pretty sure my hospital would give you chemo for that stage regardless of Oncotype. Oncotype is not the only decision making tool at many hospitals.
My decision is mine alone, and I wish I could tell you what to do! It's so hard. I just wanted to share some more info.
(I'm originally a Jersey Girl, by the way! Cape May summers....)
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LtotheK thank you for your advice, I will ask about the lymph-vascular invasion. I do know my lymphnodes were not affected, but not sure about the vascular part. I did ask him what the chances were that this has gotten into my bloodstream and he said very small. I have never heard of the Tailor X trial, but will also ask him about that as well. I feel I need all of the information I can get to make my decision. I am just so worried about damaging my body further by opting for chemo. The taxotere I am not afraid of, but I am terrified of the cylophosphamide which they say can cause cancer in other parts of your body. Maybe I should talk to my onc. about using something different? So you are a Jerseygirl too!
what part are you from? I have lived here my whole life.
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Peachy I scored a 23 on my oncotype and opted out of chemo. I got two opinions and both said they did not feel that the benefit was worth the SE that chemo would give me. My 2nd opinion did give me more information and said had my tumor been 2cm he would have recommended it and also had my KI67 been over 10% he would have recommended it. I see your tumor is over 2 cm you may want to ask about your KI67. It should be on your path report. I am on tamoxifen and feel that is my best defense against this awful disease. Also I was 48 at diag.
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Hi Peachy-pie,
I think that you are handling the decision process really well - you sound cool headed when I am sure that you are feeling anything but. A score of 19 is surely a question mark, but I think that some folks here who suggest that you consider more than just the oncotype are right. It is just part of the picture.
In my case, I sought out 3 opinions. ( 1 had a score of 26 - higher than yours so it made it easier in some ways) in my case, all the once were in agreement : I was healthy at 51, had 2 younger kids ( age 9 and 11). I did TC&4 - it was hard, but if you have the right support from close family and friends, it is doable. For me, the kicker was when I asked myself: how would I feel if it ever came back? I think with a score of 19, your decision is a bit trickier since it is unclear if chemo helps more slow growing cancers.However, I see that you are grade 2 so maybe your lower score has more to do with a high ER score than it's speed of growth. I really think that you might consider a second opinion to help you in your decision.
I just want you to know that I had a long history of allergic reactions, especially to some medications. I even consulted with an allergist who specializes in working with chemo patients who have allergic reactions. He recommended a "slow drip " - 3-4 hours not the usual 1.5 hours. I got through th chemo fine. The funny thing was that I ended up with a bad reaction to the steroids ( the stuff they give you as pre-meds to prevent an allergic reaction. I ended taking mostly benedryl and a small amount of steroids. -
Thank you Sherryc and Beau for your advice. I am looking at my path report from my biopsy, and see that ER/PR/HER2NEU/KI-67 were performed. Can't seem to find a percentage for the KI67, so i'll ask my Onc. about it Thursday when I see him. I do see that Estrogen score was 3+ positive as well as the progesterone being 3+ positive I do remember my Onc. telling me this was a good thing? HER2/NEU was negative Which he said was also good? Nottingham grade was a 5 (2,2,1) not sure about that either.
because then it says Nottingham score:grade I (3-5) points.
The diagnosis on my lumpectomy path report says: IDC moderately differentiated (Bloom-Richardson Grade II ) Measuring 2.2cm DCIS solid type with intermediate nuclear grade. No Lymphatic invasion seen. Margins clear of carcinoma. I have researched a lot of these things online, but still have difficulties understanding some of it. My BS was not a very informative, or talkative guy. Great surgeon, but very little bedside manner. So I think i'll sit down with a lot of these question you've all helped me to put together for my Onc. on Thursday! I have to say after hearing all of your feedback, I am now leaning more towards the chemo. I have come this far, and I want this fight to be worth it so it never returns. This morning I woke up to my bicep swollen and my arm being sore. I have carpel tunnel in the arm on the side where they removed 2 nodes. So put my brace on while sleeping last night because it's been bothering me lately. I hope it has not cause the beginning of lymphadema.......... I hope this swelling goes down soon.
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"lymphovascular invasion but that just means cells were not caught in the act...it is not definitive"--what does that mean? I thought lymphovascular invasion means the tumor literally has vessels growing out of it, meaning it has pathways into the bloodstream and rest of the body.
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That's great PLJ, I want to understand more and thank you so much for your info. I had an alarming and weird thing: my initial biopsy showed LVI. Final path didn't. I must say, this was also part of my chemo decision maker. Something about them being different left me unsettled. After all, my ultrasound was picking up my tumor and calling it "probably benign" for over a year. It wasn't until I called it out they looked at it. The whole thing is really imperfect!!
As for who does and doesn't get mets...it's sad, but it is still so stinkin' elusive. Part of the reason I did the chemo and never said no to Tamox or any other recommendation was because I just didn't feel like the numbers were on my side. After all, my chances of getting this in the first place at 39 with no family history were really small.
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Mine was 17. I am pre-menopausal and had angiolymphatic invasion present on my pathology report. I have a young child and am 45. I had two opinions from different med oncs...one said no chemo and the other thought there would be benefit. The angiolymphatic invasion scared me enough to choose chemo. I did 4 rounds of taxotere/cytoxan. I used cold caps to keep my hair which made it more tolerable. I knew for me especially with a young child (he just turned 5 a few weeks ago) that I wanted to be very aggressive and do anything offered to me for treatment. I owe that to my son. I wanted to know I had done everything in my power to beat this. I am now done with chemo (4 months) and on tamoxifen. Good luck with your decision....I know how hard it is. I am also in excellent health so they were not worried as much about serious health issues. I am a fitness instructor and don't have any other health risks except the dang BC!
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hi Peach
I never knew my oncotype score as I was dx in 2003 and it was not available back then. what I can say is that my onc who was a Sloan Kettering man and very smart told me that if a tumor on a woman younger than 50 was more than one cm and and graded two or three, chemotherapy was a must. you are young and I would do the chemotherapy. I did do the chemotherapy and my stats were similar to yours. just a thought. -
My onco score was also 19 and I was 43 at diagnosis. My oncologist and breast surgeon both insisted on chemo for me because of my age. My lymph nodes was clear and I was so hopeful for no chemo but it didn't work out that way for me. Now, I'm thankful that I did and feel that it gave me a little more added insurance. I figure I've done all I can do......
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Well my appointment is tomorrow at 1pm, And after talking to all of you wonderful ladies, I have decided that if my doctor chooses chemo for me I am going to trudge ahead and get through it. I am terrified, but will make it. I have come this far and I really don't want cancer to ever enter my doorway ever again. I realize the oncotype score is not the only thing to consider now, and being I am 45 yrs old, have 2 sons ages 12 & 14 that need me, I am going to do whatever it takes to stay well. My arm has started to swell in the past couple of days, praying it's not lymphedema. Guess i'll know tomorrow when I see my Onc. It's not bad, but I can tell it's swollen. Been sore on that side too.
Maybe I am just over doing at work? I have to lift coin boxes as I am a teller supervisor at a bank. I talked to one of my customers today who had BC 15 yrs ago. She told me she got through chemo with no problems & that was 15 yrs ago! So she made me feel better about it. But also have another customer who had a bad allergic reaction to it, made her throat swell up and she was in the hospital for 3 days. I guess everyone is different, and I hope my experience won't be too scary for me. I get mad at myself because I made it through surgery & radiation with no worries, so why is chemo so scary to me? ***Sigh***
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Hi Peachy-pie, I think one of the hardest things for (us Jersey ; )) girls is that BC means a lot of other issues to deal with, too. Lymphedema, osteoporosis, premature menopause, hair., etc etc etc. It stinks!
I recommend seeing an LE specialist. Sadly, even at the best hospitals, the surgeons seriously don't get it. You may be having some post-surgery trauma, so don't panic. But this is best in the hands of an expert whose job is to research the latest on the (limited, sadly) studies to date.
Good luck. You will get through this!
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