NEW Oncotype Dx Roll Call Thread
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bumping again
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I just got my onco score of 14, 9% chance, last week. My Oncologist said I would not need chemo. I am so thankful for this news.I had a lumpectomy Jan.12th, and am currently having radiation treatment. I will be put on Arimidex when my radiation is done. The waiting game is the hardest part.
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Hi Ladies, My onco score was 22 which is 14% chance of reoccurance. Chemo would benefit me 3% and I am not going to risk damage to the rest of my body. Even with chemo it could still come back and some studies have shown that chemo doesn't work as well second time around.
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I am 61 yrs. old and my OncoType score is 18. I have decided to have chemo. I have fought this cancer aggressively with a bi-lateral mx and now want to follow-up with chemo and then Femara. My BS is in agreement with my choice given my family's history of cancer. I am not BRCA positive, however. I have been referred to an oncologist and will meet with him on March 8th. I am assuming that he will begin my chemo in the month of March. I am anxious to move on and get this phase of the journey underway and then completed. I am restless tonight and can't sleep thinking about it all. Thanks for listening. Karen
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Well, if you use a regimen you can't use it again, so if you start with what is considered the most aggressive chemo regimen and have a recurrence, your only option is to try a less aggressive one--though with luck it just might work better for you. Since there's a degree of indeterminacy in all this, the best thing to do is whatever seems best to you.
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Oncotype 33. Chemo decided on tomorrow.
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OncoType is interesting....They did extend it to include node positives, but many in the study are post-menopausal and my Oncs have been cautious of this due to my age of 41 and potentially many more years before menopause (unless chemo sends me there permanently)...My score was 10, but 1mm on a node, so yes still getting chemo, but TC vs. TAC...we felt the risk of heart issues with A was not necessary.
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Just fyi, research information on Oncotype for positive nodes was provided at the San Antonio Breast Cancer symposium. Research showed Oncotype was predictive for node positive just as node negative. Of course, it is a personal decision.
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LM with AND, 8% rate = 11 score, 4 x T/C, TMXF, Grade 3
I decided to do the four rounds of T/C because: (1) one node had 1.1mm even though it was only in the capsule, not fully in the node; (2) two more nodes had specks, not enough to be declared positive, with one having eleven cells and another having only one cell; (3) mine was an aggressive grade 3; and (4) I don't completely fit the Oncotype DX criteria since I'm 49, pre-menopausal with node involvement.
I see the test as only one tool, not the defining one in my case because I don't fit it absolutely. Since mine was so aggressive, I don't want to take the chance that even one cell escaped and I have to rely solely on Tamoxifen to make sure it doesn't grow. Like you, Leta, we felt adding the A would not make sense because of potential heart issues. I guess doing the chemo makes me feel as if I have as much as a clean slate as is possible.
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Greetings,
Glad I found this thread. As you can see from diagnosis and signature line, was diagnosed with pleomorphic invasive lobular carcinoma. After 2 lumpectomies could not get clear margins, so opted to do mastectomy (rt = skin sparing) (lt = prophylactic skin & nipple sparing). Orig pathology report showed the 2.1cm tumor as ER+ @ 75% and PR-; the pathology report from the Mx showed ER+ @ 98% and PR+ @ 30%. Opted for reconstruction w/immediate placement of TE's and have had 2 fills to date. Met with Oncologist this past week and requested the Oncotype Dx test be done. He said they would submit the initial tumor, as that is a larger more defined slide (make sense?). He Onc also suggested genetic testing. I was adopted and have a very sketchy med history (except I did know a biological maternal aunt who had breast cancer). I have a daughter (and 2 sons) so I welcome the genetic test. Should I wait for those results in addition to the Oncotype results to make a decision re chemo. I am 62 and post-menopausal. The Onc used a computerized decision-making tool in his office, called Adjuvant Online. After entering all my data, it came back with these results: If no additional therapy, 35% recurrence within 10 years; if hormonal therapy (he's recommending Arimidex for 5 years), the recurrence rate drops to 18% within 10 years. If I do chemo (4 rounds of Cytoxan and Taxotere), the recurrence rate drops to 13% within 10 years. I am struggling with having to go through chemo for a 5% difference in the recurrence rate percentage. That is why I wanted to Oncotype test. I am praying it comes back 17 or less. If it is in the grey area, this decision will be on my shoulders alone!
Marianne
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Oncotype 25 .... But I decided on chemo. Start Thursday 4 rounds of TC.
Donna
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I'm reading thru some of these posts, and I just want to let you know that I was 43 when I was dx'd, and I was an Oncotype 28, I'm on the list.... thanks! I decided to get chemo, and I'm glad I did... I am 2 yrs. out from tx... I had 4 tx of Taxotere and Cytoxan.
The point for the Oncotype is simpy this:
It is JUST a tool, and only PART of the BIG picture... don't rely too much on this Oncotype score for your decision about whether to get chemo or not. I was hoping so much that I would get a REALLY LOW score, and be able to avoid chemo. But I ended up with a score that was 'right in the middle', in that gray area...
I did the chemo, so that I can say that I did EVERYTHING that I could to prevent recurrence. Hindsight is 20/20, and I didn't want to regret NOT doing chemo... In my experience, you usually regret the things you DIDN'T do... more than the things that you DID do...
Just my 2 cents...
Harley
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bumped to answer a question
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Harley44,
I am glad for you that you are confident in your decision. I have researched the Oncotype Dx assay pretty thoroughly and it has come to be more than a tool. It is a pretty reliable prognostic device. Ultimately, every woman has to gather all the information she can from everywhere she can (her medical team, 2nd opinions, library, internet, etc.) and make decisions that she will be comfortable with.
The one thing I am certain of is that no one knows where we will fall in the percentages. Those with high risk of recurrence may not see a recurrence and those with a low risk could. I think the wisest decision is to know what YOU are comfortable with for YOU. There should be no regrets for what you chose or what you didn't. Make your decision and don't look back.
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Awesome post/reply TNgolfer! We really need to be supportive of one another's decisions. It's tough enough to make these choices.
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Thanks Imays!
Should get the Oncotype results in about 2 and a half weeks. Praying for a low number; but if it is in the middle, also praying for the wisdom and strength to make my own decision! Education is empowering! Also just finished reading a report from the National Comprehensive Cancer Network on Adjuvant Therapy for Breast Cancer. There were some very interesting statistics in there. Many referrals to the Oncotype Dx assay. Node status, tumor size, one's age, and presence of lymphovascular invasion, are important factors to look at as well. This report examines those factors in evaluating recurrence rates as well.
I also realize there are probably no studies out there for people that refused chemo and/or hormonal therapy.....obviously, there is no one to follow them.
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well put Harley! I agree..
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Hi,
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Hi,
My oncotype dx score is 16. I am stage 1, grade 1, no positive nodes, estrogen+, progesterone +, her 2 -, 1.7 cm. My oncologist said no chemo. I had a bilateral mastectomy with sentinel node about 5 weeks ago. I had cancer in only the right breast, but chose to have both removed because I wanted to be as aggressive as possible. I was prepared to do the chemo. It's always a struggle to know if you're making the right decision. I've researched it and the research supports my oncologist decision. He said that I would only have a 1% to 2% benefit from chemo. There's a 3% to 4% risk from the toxicity of the chemo. From what I've read on the message boards here, there are people with very small tumors and high onco scores, which seems to support the data that a small % of early stage BC patients will benefit from chemo. There are also people that have some life long damage from chemo that they're living with. I think we never absolutely know that we've made the right decision. I think there comes a time when we have to put it in Gods hands and have faith that our decision is the right one. I chose to listen to my oncologist and not have the chemo.
Hugs,
Susie
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Susie,
I too was a 16 and I am not having chemo either. For all the reasons you sited. I am stage llb (I did have micromets in one node but it was just one node) For a 1% benefit it was not worth it to me.
Congrats with your score, with your decision and your positive attitude! The oncotype will be the new standard of care!
Kat
ps...I just got word that my insurance is covering the cost of the test. I'm not sure if they would cover the cost and NOT pay for chemo if the scores were low if one decided to go ahead with it. Thank goodness I'm not going to have to find out!
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Hello Samiam40,
Please add my oncotype score to the thread. My score was 21, 13% chance of recurrence.
Thanks for having this thread. The oncotype score did help me make a decision about having chemo. I did get 4 rounds of Taxotere and Cytoxan.
Marion.
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Hi,
Please add my score.
23 score.
Age 41, LM+R, SNB, TMXF, LPN (5 years), Zometa (x2 / year).
I had a 0.6 x 0.4 cm tumor, negative node, no fat & vascular
invasion.0 -
Just wanted to reiterate information from KATRN...., I am Stage 2, IDC 2.2 tumor with Isolated Tumor Cells in one SN and Oncotype of 11. The onc said a 1-3% better chance with chemo and a 5% chance of chemo doing something bad. I chose no chemo.
Please for everyone on this thread, join the TailorX study. We can maybe help others in the future in making this incredibly hard decision.
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Susie,
Congrats on a low score. Kat is right -- the Oncotype Dx assay will become the standard. I have done plenty of research and it is a reliable diagnostic test.
Waiting for my results and hoping for a low score----or at least a score in the low grey area.
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samiam,
This is TNgolfer (Marianne). Just got the results of my Oncotype Dx Assay. The magic number is 19. I have my appointment with the oncologist on the 10th, but I can tell you right now, I am comfortable with NO CHEMO at that number! I am celebrating!
Marianne
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Hi all.
I agree, we need to support each others choices.
I do want to add, that Genomics calls the difference between node negative and 1-3 nodes not statistically significant. Meaning we 1-3 nodes have slightly worse prognosis, but within the margin of error.
Also I will add, that the study for node pos is much smaller than node neg, so some onc's are cautious. I do get concerned when I hear posters say that a positive node always automatically equals chemo, when it is really more complex.
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TNgolfer - so happy you got a number that makes you comfortable. thanks for letting us know! celebrating with you. ((hugs))
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I was on the other list that was deleted. Please add me. Thanks.
BMX, SNB
OncotypeDX score 0.....0% local recurrence and 3% distant over 10 yrs. This assumes TMXF for 5 years which I am NOT taking so do not know what that does to the percentages. I am post meno and am NOT taking an AI either.
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Susie123... My stats are the same as yours except mine was Grade 2. Same size 1.7, same breast and also took off the left one. My onco strongly objected to me having the OncotypeDx test and insisted that I do chemo. I begged until I got it. My score was 0. I was lucky that someone had told me their oncologist had recommended the Oncotype test to them. Otherwise, I might not have found out about it in time.
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I am still wondering why we have to beg and plead for the doctor just to do their job and order the Oncotype test. Now its the same with the bisphosphanates. The research is excellent but doctors don't order it for their patients. My theory is "paddle your own canoe".
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