one pos node, did you have oncotype?
I will admit, I am probably becoming obsessed with this.
I have been reading all afternoon and it seems like the new research is leaning towards the idea that if you have a slow tumor, low proliferation, low ki 67, strong ER+ (basically low oncotype) the chemo is not so effective even if you have a postive node.
There is some additional benefit, more than node neg, but not that much.
It does seem possible however that the cancer in the node is different (highter KI 67) than the tumor.
I will see onc tomorrow, but I am just trying to figure out what sort of questions I should bring up.
Comments
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Awwwwwww Suz, I see you have your results back, and though I don't have a single answer to your ?'s I just wanted to send you a hug.
Linda
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hugs are good too!
How is your injury?
Will make sure to be careful tomorrow!
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I didn't have an oncotype (and wanted one) but there are some on these boards who did have one with a positive node. I know the website for oncotype was only saying for postmenopausal women who are node postive, but maybe that has changed now too?
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perhaps should have asked did everyone with pos node have chemo?
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Suz42,
I am from the October surgery thread also and I have my first meeting with the oncologists tomorrow, too.
I have wondered about the oncotype score that people refer to, but since I am ER-/PR- and her2/neu+, I don't think I get one. I will ask Onc tomorrow.
Good Luck tomorrow, I am a ball of nerves, hopefully we will both get a postive battle plan tomorrow.
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yes Melinda, fingers crossed for you. I do think oncotype is only for er pos.
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Ah, now that's a good question. I bet not all. I was going through all the decision making almost two years ago now (weird to think it's been that long!) and I read all the studies and tried to get the oncologists to interact with me about how helpful chemo really would be and wasn't the big impact with my diagnosis really that it would probably shut down my ovaries and couldn't we do that in a less messy way? And I still feel that in the future we will probably be using chemo a lot less for ER+ Her2- tumors (and we will probably be able to describe the tumors with more detail, too). But one of the things I have seen over the past 2 years is that new research, is exactly that, new. And moving the general consensus of medical treatment takes time and many studies. And that sometimes, changing treatment based on the latest issue of JAMA is not really the wisest choice because another study may be in the next issue.
So, it's tough to make the decisions. And you can only go on the information you have. And most oncologists really do have more knowledge about treating cancer than I do (despite my crazy researching skills). And mostly they want to give you the best outcome they can. If you don't think that is true of your doc, get a 2nd opinion. And ask all the questions you have. And then you make the decision, based on what you know at the time, that you can live with.
It sucks. It was such an eye opener to the practice of medicine for someone who had never been seriously ill before.
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Hi Suz, just want to let you know I had one positive node out of twelve taken. I was put on the chemo schedule 6weeks after my double mostectomy. Hope this was helpful
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This was the best article I could find!
Here is key excerpt!
"These results could impact how we select node-positive patients for adjuvant breast cancer clinical trials," said Joseph Sparano, M.D., director of the Breast Evaluation Center at the Montefiore-Einstein Cancer Center in New York and one of the Eastern Cooperative Oncology Group (ECOG) investigators who coordinated the study. "Patients with low Recurrence Score results seem to have excellent outcomes with standard chemohormonal therapy at 5 years, even when there are positive lymph nodes."
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Suz42 -- interesting article. I think that is the direction that things will go with cancer treatment. I will be interested to hear if you are able to get an oncotype text and who ends up paying for it!
But note the frequent use of words like could, seem to, suggest, and that this was a first study, to be followed by another. The NCCN guidlines are only recommending use up to micromets at this time, and the Oncotype folks themselves are only recommending for post-menopausal node positive.
Which is just to say that your onco isn't trying to be difficult if s/he is not sold on making the chemo decision based on an oncotype test in your situation. S/he is just trying to follow standard of care and current state of medical knowledge.
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All good points revcat.
Not an easy decision.
What troubles me isn't chemo per se, but going through chemo if it is of little to no benefit.
My father had blood clotting disorder that killed him at 63, he had been given chemo for low grade lymphoma, so I fear I might be at higher risk of complications.
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SuzNY -- I know exactly what you mean, I felt the same way and you have two more years of research leaning away from chemo for ER+! Sometimes I feel like I just gave in when I did the chemo. I am glad it put me into menopause, since at least I feel like that is of benefit! (I was 48 at diagnosis).
You have a lot of good questions, including the one about your father's clotting disorder. Keep asking until you get answers you can live with.
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While they do the Oncotype DX test now on women with 1-3 positive nodes, there seems to be just a single study (SWOG 8814) on the impact of adding chemotherapy to Tamoxifen in node-positive women. This study on node-positive, post-menopausal women compares the effectiveness of CAF followed by Tamoxifen vs. Tamoxifen alone. That study found no advantage in CAF-T v. Tamoxifen alone for women with lower Oncotype scores.
My Oncotype score was 18, so based on the above study, I would seem to be unlikely to benefit from chemo. However, I was cautioned that it was only a single study and the study group was very small. Also I'm premenopausal so it was felt that the results might not be applicable to me. So now I'm on ACx4. This will be followed by Tamoxifen.
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I will just mention inpassing that Grade makes adifference as to whether chemo is required.
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I had micromets in one node, my tumor was strongly ER+, my onco felt very strongly that the most critical post-surgical treatment in my case was hormone therapy. She had mixed feelings about what additional benefit chemo would have though she did recommend it given my age (44) and as the most conservative approach. I had a very difficult time making a decision, ultimately I decided not to do chemo and she was fully supportive of that and not uncomfortable with the decision. We did do the Oncotype DX test and it was covered by my insurance. I know that test is typically done with node-negative women but my onco felt it could also be of assistance in my case in making or further supporting my decision. My score was a 12, that was helpful to know. The hardest thing was making a decision, once made, I just moved on. I know most women in my situation would have probably done the chemo, for some reason it just did not seem like the right choice for me. Only time will tell if the right decisions were made - for now I am 6 months into tamoxifen, living my life and feeling great!
Best wishes to all,
Julie
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Julie, thanks for your story, very helpful!
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I had micromets in one node and struggled over the decision to have chemo. My micromets weren't discovered in the initial tests during surgery, but only after the final pathology was complete. This shocked everyone as I had a low KI-67 score and a tumor < 1cm. I really had a hard time with the chemo decision. Since I was premenopausal the Oncotype test was not recommended. My onc recommended chemo, but said it was my decision. I finally told him, "I've tried and tried but can't convince myself not to do chemo ... Let's go for it. I had 4 rounds of TC that put me into menopause after the 1st treatment.
The cheno was not bad ... but I too question. Did it do me any good? I'm on Tamox now and have just had the metabolization test to determine if I'l stay on Tamox or move to an AI. So far so good!
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SuzNY, there are so many factors to consider when determining what tx is best for you. In the end, after you have done all the research, asked all the questions, and have all the tests results, it all boils down to one thing. What do you feel comfortable with? I know that may be taking the simple route, fbut or me I just wanted to know that I had thrown every thing at the bc that I could. Now I am older than you, 60, and my Oncotype DX was 25 and that was the determining factor for me. I am doing TX x 4 and will have my second tx next week.
The doctors will not give you any guarantees, but they will guide you in a direction that they think will give you the best advantage. But in the end, it is still your decision.
Good luck to you on this journey. I wish you the best.
Juannelle
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oooh, I was so hopeful back when I wrote this thread, in spite of my low proliferation rate, oncotype came back 22.
Any 22's out there, would love to know what you did. Oncologist app is tomorrow, and I am still going back and forth.
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