NEW Oncotype Dx Roll Call Thread
Comments
-
Oncotype score 18, 10-11% recurrance risk, age 58 at that time and post-menopausal. Decided on no chemo because second MO said he was "not enthusiastic" about giving me chemo, even though he's "not afraid of chemo" which he gives to many patients every year. Had brachytherapy instead of external radiation and then went on letrozole (generic femara). I'm happy with my treatment, my recovery and my prognosis, though I am sure I will get nervous every time a new mammogram and follow-up is due (as it is in July). Best wishes to all of you out there in bc.org forum-land.
0 -
Oncotype score of 39; 27% recurrence rate; age 57 at dx, IDC, Grade 3, 1.4 cm, Stage 1, 2 years post menopause, BRCA2+, ER+(95%, 9.0 on Genomic Report); PR+ (5%, 6.5? on Genomic Report - the left hand side of this CI put it in the negative range), Her2neu negative. BMX (prohy on right), SNB, 0/1 nodes. Chemo: A/C DD, T DD, CPN 6x
Taxol was brutal for me; not A/C. CPN is Carboplatin - MO "going off the reservation" as platins appear to especially attack BRCA cancers. Easiest chemo of the bunch. I think the philosphy is to throw the book at early stage cancers now. Doing ok...just neuropathy from the Taxol..getting more mangeable, but not acceptable, 4 weeks out.
Is samiam40 keeping the master list up? I think it would be helpful to see if scores reflect Her2+ or not as those scores are generally higher, but mitigatable with Herceptin.
0 -
Good news was first oncotype score was a 6....although I do have one positive node, so the scoring is a bit off.
Because of that, and the fact two tumors were 1.6 cm plus I am intermediate age (too old to say chemo for sure, too young to automatically skip the chemo for AI)--tumor board requested a test on the second 1.6 tumor.
And guess what....more than three weeks have passed and I just found the lab messed up and send the wrong sample. Starting the process again. More agony of waiting.....
0 -
And when I checked in with the MO as to whether I should re-start AI in the meantime (took it for 2 months before surgery due to long-planned trip plus my ILC path from 2 biopsies showed low motility--then was told to stop right after May 1 surgery to await complete DX)
--the nurse who called me back today said crabbily: Are you getting chemo or not?
Duh, thought that was why the 2nd oncotyping.
0 -
My Oncotype score is 28. The printout of my test results does not specify a recurrence score, but reading from the graph, I have about an 84% chance of being alive and BC free five years from now, with tamoxifen only, and roughly 87-88% with tamoxifen + CAF-T chemo. The additional detail on the second page says I am very strongly ER+, just barely PR+ (my score 5.7, cutoff is 5.5), and definitely HER2 negative but not extremely so.
Even with a 1 mm micromet in one of my sentinel nodes, I was not advised to have either ALND or axial RT. With a score so close to the edge of the "high" range, plus the positive node, I'd be scared to rely entirely on HT to control any cancer that may have gotten past the sentinel. I agreed with my onc that chemo sounded like a prudent thing to do. He suggested TCx4, but the chance, even though slight, of losing my hair forever unnerved me so much that I asked what my other alternatives were. I just started 6 months of CMF this past Wednesday. I take Cytoxan daily in tablet form, with the M & F by infusion once a week.
I hope that's all the info needed to add me to the rollcall. One thing though, my recurrence risk is for 1-3 positive nodes. My onc also gave me the printout of what my percentages would have been if my nodes had been completely clear, but it isn't an apples-to-apples comparison. The study cited on the node-positive results printout gives a percentage of patients who had either a distant recurrence, a new primary BC or died from any cause during five years of followup. The node-negative result, if I understand the printout correctly, gives a rate of distant recurrence only, and the followup period was 10 years. There's a clinical trial running now for Oncotype testing in node-positive BC, that may make it possible to compare recurrence rates for any score, regardless of node status. I was going to participate, but got disqualified...the top score to remain eligible was 25.
0 -
10% 16 score (BMX, 4x TC, RADS, TMXF) 43 yrs old, premenopausal
0 -
Mom of 3boys.. I am wondering about your rads...why did you need them with your BMX and neg nodes?
Thanks...0 -
Hi Stepmic....well, it was a difficult decision on the rads. My BS said "no, I got great margins" my MO said, "I don't think so, you have no nodal involvement" (she was on the fence about chemo, but we did it because I was only 43 and my tumor was "over 2cm" and in her group, they use 11 as a cutoff for "young, otherwise healthy" women. But, she said I should get an opinion from an RO. I ended up getting three opinions. One wanted to radiate two areas (don't remember specifics) the other two recommended radiating the surgical scar only,Since my tumor was just over 4 cm, as they said this is the most likely place for recurrence. It brought my "local recurrence" rate down from an estimated 15% to less than 5%.
0 -
17%=score of 25; BLM with R; SNB/ALND; TC X 6; TMFN; NO RADS!
0 -
Finally got the "third" oncotype score in. First one on tumor 1, ILC 1.6cm=8, recurrence 6. (Second score unknown as they sent the wrong sample.) Real second score ILC 1.6=16, recurrence 10. AI, no chemo. UMX/DIEP.
0 -
Just got my score of 18----I am so cofused---I am 48 and doc just says "you are on the line" . Says if I choose chemo he will do T/C x 4 but tht it is "up to me' since he has no data to show it has impact -----
but that it might. Anyone lend any guidance to this confused gal......
Thanks
0 -
As the MO would say, it's your decision. I would look at the % decrease in recuurance and make a decision on that. My oncotype score was 39 (Her2 negative), so I have a 27% chance risk of recurrence, and chemo reduces that by 30%, or 9%, putting me at 18%. (Arimidex gets me an additional 2% bonus over Tamoxifen..the studes based on Tam). 9% was a NO-BRAINER. If you get a 1-2% chance, worth thinking about...use 30% of your risk of recurrence from Genomics, THOUGH 4 treatments are so doable. I will have had 14 treatments by the time I'm done next Wednesday....I worked throughout, though less during the dose dense. AC - Adriamycin has some risks that I might want to avoid for a small %, but that's not what they are suggesting for you. Ironically, Taxol DD was just brutal for me, but I was the minority on that. I have bad neuropathy...I could get through the pain with hydrocodone...but that was dose dense.
I don't think this is expressed enough around here...I've seen a few Grade 3's come back with extremely low scores...not many. But I'd question that. Did they do enough samples..did they get the actual lesion (macrophages will score low)...in one case I saw, did they get the right sample?!! I'm sure all of this happens. Yes, a Grade 3 can get a low score, but it is less likely. I've also seen a Grade 2 with a higher score than myself.
Good luck with your decision. With the new anti-nausea drugs, chemo is so much easier than it was 2 years ago. Losing one's hair is tough, but personally, I got over that fairly quickly.
0 -
Chitown, my score was 19 and the MO would not prescribe chemo. 12% recurrence rate. He tells me the generally population has a 10% chance of getting cancer. My tumor was very slow growing and chemos don't work well on that type. My ER/PR+ was 99% and he feels I will get the most protection from radiation and tamoxifen. You have to make the decision that you are comfortable with.
0 -
I would get a second opinion. Does your MO do tumor boards, where several people get involved with the recommendations? Also, grade does indicate a possible faster growing tumor, so I agree with Kam about taking that into consideration. Can your MO explain more about the grade?
0 -
My score was 21 (15% recurrence) and was given the "option" for chemo (TC x 4). I was scared to death of chemo, scared really of all the side effects, especially the vomiting. My doc assured me that if I did do the chemo I would be given all the meds necessary to control and possibly prevent most or all nausea and vomiting. Still there were the other side effects that couldn't be prevented, namely, hair loss.
Well, I decided to do chemo. Started July 5th. I have had 3 out of 4 treatments. I've never vomited. Have had some nausea but well controlled and tolerated with the meds. I lost my hair about 2 weeks after the first treatment. This has been difficult. I miss my hair! I've managed to keep working through all this and have missed one or more days of work after each treatment (usually not till day 3-4). I've noticed the fatigue getting worse and worse with each treatment. My hemoglobin has dropped to 9.6 after this last round which is making me so tired.
All in all, I do not regret doing the chemo. I wanted to do everything I possibly could to prevent recurrence as much as I possibly could.
I hope this helps in some way. Good luck and god bless.
0 -
My score was a 17, 11% recurrence possibility, so no chemo for me. But the night before I found out I psyched myself into doing chemo because I was sure I would need it. Ultimately it comes down to doing everything possible to keep the cancer at bay. Good luck to all of you who opt for chemo.
0 -
My Oncotype DX score was 27 with a distant recurrence rate of 27-30%. With 5 years of AI (I am post-menopausal), this decreases my risk to 15%. Adding second generation chemo would decrease my risk to 10%.
I looked at the numbers in two ways:
1) Adding chemo would decrease my risk by 5% (15% to 10%)
2) Adding chemo would decrease my risk by 1/3 ( 10 is 2/3 of 15)
I opted for chemo. Have had first of four TC treatments.
I also got a ki-67 to confirm/disconfirm results. It came in at 25%.
At the end of the day, I can say that I have one everything possible.
0 -
301724 - are you sure about your recurrence score?? My Oncotype score was 39 with a recurrence of 27% plus or minus (I am Her2neu negative.)
0 -
You know, I'm looking for it on my report and can't find it....where to look? Those are numbers I got from my MO.....According to the graph and info I got from MO, recurrence rate would be 18% on Tamoxifen. AI produces slightly better numbers - in my case, that's where the 15% comes from. I'm thinking the 27-30% would be without any hormone treatment....which, of course, isn't recommended for ER+.
0 -
301724,
Do you have a copy of the report that Oncotype sends out? Mine was 4 pages. On the first page, half way down is is the Breast Cancer Recurrence Score = 20 the number is in a circle. The next paragraph has the Average Rate of Distant Recurrence of 13% (95%CI 10%-16%) in a box. Below that was a big graph illustrating where my number was in relation to the low to intermediate to high risk sections.
If you don't have that type of report you could proably call Oncotype(GenomicHealth) and have them send it to you.
edited to add, I think I was typing while you were posting and edit! Sounds like do you have the report.
Dx 10/2010, IDC, Stage II, 1/20 nodes, ER+/PR+, HER2-
0 -
301724 - The score assumes Tamoxifen, so it already assumes an anti-hormonal. You probably started out with an 18% recurrence rate, without chemo, but with antihormonals....my MO gave me an extra 2%, over and above Tamoxifen, using an Aromitase Inhibitor. Sounds like your MO gave you 3%, bringing you to 15%, without chemo. Chemo would give you an absolute 1/3 of the 18%, or 6%, so now you would be down to 9% (assuming 3% for the AI) or 10% if you go with my MO's figure for AI's.0
-
Thanks. Found the report. The % recurrence comes from the graph....there's no paragraph that lists it for my score. Thanks to all for the clarifications.
0 -
My Oncotype score was, believe it or not, 5! Five! The MO suggested that I do chemo anyway due to serious node involvement (2 clean nodes + 2 macro nodes + 1 extra capsular node of 3.2 cm). The limited research (<400 women) suggested that chemo actually reduces 5-year disease-free survival rates drop from 94% to 90% (1-3 positive nodes) and from 82% to 75% (4+ positive nodes). There is an ongoing research study using the Oncotype score to determine treatment for women with 1-3 positive nodes. They are hoping to get over 8,000 participants and it was really tempting to be one of them. Half with get chemo followed by hormone-blocking and half will skip the chemo. I chickened out, though. I don't want to do this again if I can avoid it.
0 -
I'm confused about the 2 numbers listed ex. 5%=11
My oncotype was 15 so my dr said it was up to me. She showed me the ranges and since mine was in the middle, I have chosen a full course of Ac-t. She offered me a shorter course, but I wanted the full course. Basically she said if I wasn't going to be able to sleep at night worrying about it that we could consider the full course.
I just don't want to look back in a few years and wish I had done it.0 -
BUMP
0 -
Trinity - I had ACT and seem to have permanent neuropathy in my feet from the Taxol - it is miserable. Please carefully weigh the cost benefit of things should you feel any neuropathy come on. I had a high score, but I wish I had stopped Taxol (neuropathy started after 2nd dose dense). Unfortuneately, chemo carries risks too.
0 -
@BethBV, if you are talking about the same study I'm thinking of, you may be disqualified by having such a low Oncotype score. As I recall they were only accepting participants with scores between 11 and 25. I signed up for the study, but my Oncotype score was outside the eligibility range too.
0 -
Curveball - The study I was considering had a flow-chart which indicated any score of 25 or less with 1 to 3 positive nodes was eligible. But I went with the chemo anyway. Some other information that the doctor had indicated that with the extent of node involvement was much greater than 3 positive nodes would usually indicate. I am curious, though, if hormone-blocking alone would have been enough given the very low Oncotype score.
0 -
I have a question about the recurrence rate when having an AI over Tamoxifin. From what I am understanding, getting an AI gives you a 2-3% advantage over the recurrance rate from the Oncotype DX. I had a 16=10% recurrence. On arimidex so my recurrence rate is 7-8%? I had not heard this figure before.
0
