NEW Oncotype Dx Roll Call Thread
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Hey Sam. My onco score was a 19 with a 12% recurrance. My codes would be BLM, R, SNB, and TMXF. According to oncologist, no chemo, I am still awaiting a 2nd opinion just to feel better but am hoping for the same answer. I only worry about it because I am only 35.
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jpixstix, You are added to the rollcall. Good luck with your decision. It's not an easy one.0
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Hi Charlotte--Your course of treatment seems perfectly appropriate to your situation. It interests me that you mention extravascular invasion, which tends to be a debatable issue. Some studies conclude that it indicates an aggressive tumor, but there isn't general agreement on this point. Lymphovascular invasion doesn't get much attention either, although it appears to me that it could give cancer cells direct access to the bloodstream. If it showed up on my path report I'd be very concerned.
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Well, I saw a different oncologist the other day and the vascular invasion thing came up. In my original haze of being diagnosed, I never asked to see my path report from my core biopsy. I learned two things about it that I didn't know back in November 1) turns out my tumor was 100% ER/PR+. I'd love to hear from anyone who was so positive. On a slightly less positive note 2) the pathologist identified focal vascular invasion. This was the first I had heard this. The oncologist, told me and I began to get upset, remember based on my Oncotype and other things I didn' have chemo. He calmed me down right away and said there was no evidence in my mastectomy pathology report which and underlined the word FOCAL, meaning very little and they got it out by chance with the core biopsy. I can't help but wonder if the biopsy itself caused it. Anyway, he left me feeling good about not having chemo, and really good about having my ovaries out. But of course this is just one more little thing to wonder about in the back of my mind. I went to him because I want a 2nd onc to run things by and he is great, I'm reluctant to put my life in the hands of just one onc without ever getting another opinion.
As an aside, I mentioned that one oncologist told me Oncotype wasn't tested properly on pre-menopausal women. He told me that he has worked with/for Genomic Health and that it indeed was tested on pre-menopausal women and was very frustrated that oncologists are telling patients that it may be less valuable in pre-menopausal women. He has excellent credentials and he is on the ASCO sub-committee on breast cancer.
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My tumor was 98% ER and PR positive. I had a lumpectomy. My oncotype was 26 so I am doing 4 cycles of AC, followed by 18 days of radiation, and then 5 years of an aromatase inhibitor. I am 58 years young.
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I wonder if we are unusually high? I didn't think to ask him yesterday, so much information overwhelms my senses and I didn't have anyone who could go with me. I feel good about the hormonal treatment, but he also told me to stay away from flax, I've been putting it on my morning oatmeal, so for now, until there is good data, on people, to show flax doesn't cause problems with ER+ women, I guess I'll keep away from it.
Best,
Karen
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My IDC was 90% ER positive, PR negative and my ILC was 95% ER positive, 10% PR positive. I have not asked my onc about flax, but will when I see him in 2 weeks.
I have been adding flax to my oatmeal everyday too. I think I will hold off for a while.......
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Welcome to the rollcall Pam456!
darsura and KEW: It's so hard to know what to alter in our diet and environment. I was just having this same discussion tonight at my BC support group meeting. There is so much information out there, not all of which is correct, and no good studies or data. If it makes you nervous (the flax), then it's definitely not worth it, but I sure wish someone out there would study these issues so we could know what to do going forward.
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Samiam,
I agree, maybe there are some studies being done, but one Reg. Dietitian I know, cancer is her specialty, said they will never be conducted (on people) because there isn't much money behind flax. I hope that isn't true, because I think is it very good for us for many reasons, just not so sure about ER pos gals. Gosh, our dx's are almost the same, except I chose not to do chemo, well most of my doctors suggested I shouldn't. I hope that was a good call. I am having my ovaries out and will derive some benefit with that. I was offered the bisphonspenates trial, but opted out, I had so many decisions to make on my own, I was overwhelmed. However now wish I had joined. I hope it goes well for you.
Karen
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Hi Seabee, The extravascular invasion and the one positive lymph node is the reason I decided on chemo as one of my treatment options even though my oncotype was 11. The thought that one cancer cell might have escaped the surgeon's knife and travelled into my bloodstream or lymph system made chemo my means of ammunition to go after those "suckers" plus the tamoxifen not feeding the cancer cells the estrogen it needs to survive and proliferate.
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Charlotte--There's a difference between extravascular invation and lymphovascular invasion, though they sound like they might be the same. In extravascular invasion, some cancer cells get out of the lymph node into the surrounding tissue. In lymphovascular invasion, the cancer cells get from the outside into a lymph node or blood vessel by penetrating the vessel's wall. This is not the same as shed cells being carried along through the lymph channels and being trapped by a lymph node.The significance of both is not clear. Oncologists rely instead on size of tumor, number of nodes involved, etc., to decide on treatment. It seems to be assumed that radiation will take care of extravascular invasion if your treatment plan includes it, but I'm not sure how it would work on lymphovascular invasion. In your case, since you had the BM and weren't doing radiation, chemo was a logical alternative for dealing with extravascular invasion.
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KEW, we do seem to be tumor twins, don't we? Isn't that a bizarre coincidence? Even down to the number of lymph nodes removed!
It is a completely reasonable decision in our situation not to do chemo. Keep in mind, I am 8 years younger than you. We also come into this with our own biases and I was admittedly biased in favor of chemo. I'm positive that my doctor would have supported me either way.
If you are having second thoughts about not doing bisphospenates, what about asking your doctor to prescribe them off-trial. There are lots of women on this board whose doctors are giving them 2x yearly infusions of Zometa and (I assume) getting insurance to pay for it. Or, you could get prescribed an oral bone density drug, since your oopherectomy could (hypothetically) lead to bone loss.
We both have great prognoses and I'm optimistic we will do fine. Try not to have 2nd thoughts. You made good decisions.
-Samiam40
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Update on my rollcall~ I'm having 33 rads and atleast 5 years of Tamoxifen. ~~~~ Have any of you guys experienced any s/e from the tamoxifen?
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Marlenet--re. Tamoxifen, try the hormonal treatment forum. You should find plenty of information there.
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Samiam40,
We indeed are twins and I'm glad to have found you! You have some great thoughts on the bisphospenates, I've been told that I should have a bone density test to see if I have bone loss, apparently insurance won't pay for bisphospenates, and it is 1500.00/infusion of Zometa, unless there is bone loss, however your suggestion that having the ooph, might make me more likely to have bone loss, that is a great idea to explore. Clever girl! Thanks, too, about being supportive of my decision. I, too, feel like we have a good prognosis. I'll never forget my primary care doc called shortly after my surgical path report was sent to him, he was really thrilled, so I have to remember those days. My mom died of bc and I always thought if it came my way I'd do chemo, and was really surprised I didn't, based on many reasons. I thought I would do it no matter what, but when presented with everything, I didn't. I had 14-16 inches cut off my hair after my dx, to begin to get ready for chemo.
Keep in touch!
Karen
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I got my results today my recurrence Score is 20 so that puts me at about 13%. I am scheduled to do chemo starting next week.
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My mom age 62 has ILC stage 2A grade 1 0 nodes had SNB clear margins
3.5 cm E+ P+ Her/2 - BLM in February 2009
Oncotype Score came back at 20 (12%)
Onc. said that doing no Chemo or HT she had a 12% chance or reacurrance (88% chance of being BC free for at least 10 years out)
Taking HT for 5 years would cut the 12% to 6% (94% chance of being BC free for at least 10 years out)
Adding chemo would only increase her chances by 1 or 2%
Given the fact she is post menopausal and 62 I just don't see the benefits of doing chemo. I feel from speaking with her Onc today, he feels the same (but can't come out and say totally one way or the other since she falls in the grey area). I feel (based on all the reading I have done) that HT would be best.
I was wondering if anyone had a simular situation, or any thoughts? I don't want to lead her one way or the other. I want her to be comfortable in her decision and to be able to sleep at night and not worry she made the wrong decision.
Thanks for any input.
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My situation was totally different (age 40, IDC), so I don't feel qualified to weigh in on this subject. Hopefully there are older women out there with ILC who can offer some guidance.
One thing I noticed in your post is that you mentioned your opinion and what you think the onc recommends, but I was wondering how does your mom feel about doing chemo? That's really the key factor.
Finally, one more point. My understanding of Oncotype is that the recurrence scores factor in 5 years of tamoxifen. So a score of 20 with a 12% recurrence rate already factors in that the patient is taking hormonal treatment. I'm not sure how you get that number cut in 1/2 to 6%. Double check on that, because I'm not sure that's correct.
Good luck and hopefully others will chime in as well.
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Hi samiam
I think you are right, unless I really didn't understand what my onc said. It's the chemo that gives the greatest % of reduction and the hormones only about 1%. Different types of chemo give different %.
The lighter chemo and hormones would be about 91- 92% Reg chemo with hormones 95%. both being a 3 month cycle. (at least for me)
kat
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Samiam40
The information I posted above was giving to us by my moms Onc. He is the best in our area and very well published. He is the one that said it would put her from 12% to 6% by taking HT and chemo would only change the % by 1-3%.
She has an appt with him next Wed. and I am going to clarify this with him AGAIN. The %'s are so confusing. I just want my mom to be informed completely before making the decision of doing chemo or not. She says she would rather not do it if % wise it would not be anymore beneficial than doing just HT. Also, she has ILC and from what I have read on some of the postings, it tends to respond better to HT rather than Chem. I am not sure if this true or not.
I guess we will wait and see. From some of the postings I have noticed that younger women in the low intermediate range tend to do chemo and older ones (like my mom, she's 62) tend to do HT.
Thanks for the information
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Hi kat - I just sent you a PM - I used the same oncologist as you in the beginning of my treatment! I'm curious as to why you're getting chemo since your score was 20 and you're Stage 1 and Grade 1. The onc told me I wouldn't need chemo with the same staging as you even though my Oncotype DX score was 22........he only changed his mind when my FISH report came in showing I was highly Her2++++. So maybe you're much younger (I'm 54) or have a stronger family history than me? Or maybe the onc has started becoming more aggressive in treating bc than he was last year? Or did he leave the decision totally up to you? Hope you don't mind me asking these questions - and I hope you'll be getting a "light" chemo like I did so you won't lose your hair.
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LAM2009--You are absolutely correct about the chemo only reducing the risk of recurrence by 1-3% when you have a low to intermediate range Oncotype score (like your mother). It is also my understanding that many older/post menopausal women with ER+ node negative tumors do elect to do only hormonal treatment and skip the chemo. What I do not believe is correct is that hormonal treatment will cut the 12% recurrence risk in half. The recurrence rate that Oncotype provides (a score of 20 correlates with 12% recurrence risk) assumes that the patient will be taking hormonal treatment (tamoxifen). Now, I understand that AIs are considered to be more effective at preventing recurrence in post-menopausal women, so possibly your onc is suggesting a further risk reduction for taking an AI instead of tamox? However, taking tamox can't reduce the oncotype recurrence number, since oncotype assumes 5 years of tamox in its calculations.
Below are some quotes from bc.org on Oncotype:
http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp
You and your doctor will consider your Recurrence Score in combination with other factors, such as the size and grade of the cancer, the number of hormone receptors the cancer cells have (many versus few), and your age. Together you can make a decision about whether or not you should have chemotherapy in addition to hormonal therapy.
You and your doctor can use this information to gauge your risk of distant recurrence (reappearance of the cancer outside the breast) relative to your Recurrence Score. This graph is based on the results of a clinical trial involving 668 women with ER+, node-negative breast cancer who were treated with tamoxifen...
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Samiam40,
Thanks for the information. I actually called Geometrics (OncotypeDx poeple- not sure if I have name correct) and you are right. The % DOES take into account that the person with do HT (TMXFN) for 5 years. I will question my moms Onc next week during her appoint about AI's to see if he was planning on going that route when he said taking HT would cut her % from 12 -6.
Thank you for the informaiton. It is so nice to have this site and people like you to go to for questions.
Thanks again
Lisa
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Samiam40,
Here's my info for your survey. OncotypeDX score 23, 15%, HSTY, SNB, BLM, R, A/Cx6 DD, FM, Zometa
Thanks
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bumping this up to the top
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xpecmiracles here. Just checking in with you. My oncotypeDX score was 14 and I am in the TailorX trial. I finished my chemo last Thursday and will get my TE replaced probably sometime in May. Things are going rather smoothly. I'll keep in touch!
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Oncotype score = 24, LMP, SNB = negative. Am currently undergoing Mammosite (actually it's a Contura balloon) radiation. Have completed 4/10 treatments. Age 62. Had hysterectomy 20 years ago but still have one ovary.
My breast surgeon says that the 15% risk with Tamoxifen is cut in half because I'm on Arimidex (Tumor was strongly ER+). So that cuts my risk to 7.5%. He said chemo would cut the risk to about 6%. Chemo would therefore buy me 1-2%, according to him.
However, I have a neurologically based disability (Cerebral Palsy since birth). Based on that, he says chemo will probably do me more harm than good. I will be consulting with an oncologist soon but I was wondering what anyone's feelings on my case might be.
Thanks.
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I'm new to this thread too. I had a score of 24 and use an oncologist at a major cancer facility. He consulted others there and they all recommended no chemo since I'm in the intermediate range and there was no clear benefit to the chemo. According to him, I would gain about 2 - 3% benefit with the risk of serious side effects being 1 - 2 %. I was told the decision was mine and I chose to go with their recommendation. I recognize there are no guarantees either way. I'm 53 and will be on Arimidex for 5 years. So I'm (BMX, SNB, AMDX).
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Just want to say hi. I was offered the Onco DX test by my Oncologist about four weeks ago and am still waiting for the result. I am with one of the top cancer care centres within the NHS here in England and Genomic Health are trying to get us into the test - I have been offered the chance to do the test as a freebie to see what Oncologists this side of the pond think of it. Sounds a good idea to me. I hate the waiting bits in between the drama but guess it just has to be done. Am really, really, really hoping I don't have to do chemo.
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Carol--the first thought that runs through my mind is that the 1-2 % gain from chemo is purely hypothetical, but the drawbacks of doing it are certain. It is an unpleasant and often debilitating treatment. People who need it can certainly benefit from it, but if an oncologist has doubts about it benefiting you, I'd take his opinion seriously.
Be glad you don't have my oncologist. Kindly gentleman that he is, he is "uncomfortable with these no-chemo situations," and probably thinks everyone should do it. The advantage is that he's keeping me "on a short leash" by scheduling frequent follow-ups, which might be more beneficial than chemo.
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