NEW Oncotype Dx Roll Call Thread
Comments
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Linda,
Thanks so much for the reply and information. I did a quick Google search on the Austrian study and thought I read that the encouraging results for Zometa were for pre-menopausal women. I did see reference to at least one other study (AZURE ??) that includes both pre and post menopausal women. I have both osteoporosis and osteopenia so maybe getting approval won't be that difficult.
I'm almost 63 but am on Medicare (actually a Medicare PPO replacement plan) by virtue of having been on Social Security Disability for over 24 months. I have a mobility disability since birth and worked for 30 years as a computer programmer but that just isn't feasible now. The point of all this is that I don't know if I even need insurance approval but sure will check it out if the onc agrees to treat me with Zometa.
At any rate, the entire issue is #1 on my list for my onc visit on 8/26. Thanks again.
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Hi Carol,
Regarding Zometa being only for premenopausal women with early BC: That was my exact question to my oncologist. His response was that the premenopausal women had all been induced into menopause, and were therefore technically menopausal too. Both he and the other oncologists at his NCI university teaching hospital are prescibing off-label to those who are interested. They believe that if the results continue to be as encouraging as they have been, the Zometa will be standard of care soon. I know from reading these boards that other oncologists feel it is too early to prescribe for non-metastatic disease.
The Azure study was testing the effects of Zometa on the bone density of postmenopausal women while taking an AI. It showed no loss of density or an even increase for the Zometa group, while the other group had a decrease in bone density.
The Bisphophonate Trial is testing both pre and post menopausal women to see the effect on recurrence. The dosage of the Zometa is more frequent--don't remember the exact details now.
None of the women in the above studies experienced osteonecrosis of the jaw, but it is still a documented side effect and something to consider.
Please let me know how your meeting with your oncologist goes.
Linda
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Hi,
I am 62 and had no node involvement early stage BC. I did have chemo( 4 TC's) due to an oncotype score of 27. My onco suggested Zometa to strenghten my bones as well as the prevent future recurrence. My insurance did pay in full. I also will have it every six months. I did need to get approval from my dentist before. first infusion went fine. I am also on Arimidex for five years.
I feel that if you are able take all that you can to prevent future recurrence.
Hugs to All,
Francine
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11%- score 18: Angel10: Age: 51 at dx; BLM; SNB, will start TMXF after exchange surgery
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Samian40,
Thanks for doing this!
Here are my stats:
Age 60, Oncotype score 13, recurrence rate 9%, LMP, 25xRADS, Arimidex, Zometa.
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Linda,
Thanks again for the valuable information.
I've only seen this onc twice. Since I'm not on chemo, he sees me every few months. I have a feeling that I may have my work cut out for me in talking him into Zometa but there are always other oncologists -- unless he has a valid reason not to treat me with Zometa. My bone density is already not good so maybe I'll have a bargaining chip in that.
Thanks again. I'll keep you posted. I see him on 8/26.
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I am going to the onc this month and hope to talk her into giving me Zometa. Is anyone else having a problem getting their onc to prescribe Zometa? I have even had a decreasing bone scan in the past year.
Melissa
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Was dx with IDC, Stage 1, Grade 2, 1.4 cm in April 2006. Had lumpectomy and most thought I wouldn't need chemo. Had Oncotype DX test score of 27 and decided to do chemo based on that. Had 4 cycles of A/C, followed by 33 rads. Now taking Arimidex since Nov 2006. Arimidex caused osteopenia. Onc put me on Fosamax to begin with, but I didn't tolerate that too well. So, in January he gave me an infusion of Reclast- which is very similar to Zometa. It is just a once a year infusion, and seems to have helped me a lot.
Choca
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Reclast -- another item I've added to my list of questions for my onc visit on 8/26.
Thanks. This list is great!
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The New York Times had a good piece on the Zometa studies and how various oncologists are intrepreting/applying it: http://www.nytimes.com/2009/02/12/health/research/12bone.html
I'm 42 with an oncotype of 17 (11% rec. risk) and opted not to do chemo. Part of what made me feel OK about the decision was the Zometa results, even if they're preliminary, etc. -- my oncologist feels it brings my recurrence risk down to the same extent chemo would (down 3%). I had my first infusion on Friday and was pretty achy and odd-feeling on Saturday, but today (Sunday) am feeling normal again. I'm hoping more results emerge soon on this treatment, and am grateful to have an onc who's willing to use it even when it's not standard practice yet.
My insurance is paying for the Zometa, though a bone density test showed osteopenia, so I'm not sure how much that influenced that coverage decision.
Thanks again, Samiam40, for all your work maintaining this incredible list.
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Just a follow up on my score and it was a 39, which I assumend would be high since I had a grade 3 cancer. Seems that a grade 3 cancer will have high scores, but I didn't think that would have been a waste for not going through the oncotype dx array. It has given me confidence to move forward for a treatment plan, which I will be setting up next Wed. with the Oncologist.
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Hi All - I am 46 yrs old, profile shown below. Family history with much cancer, both sides of family. Oncotype score 20, recurrence rate 13%. Although technically node negative, small amount of cancer cells in first node only. 7 nodes removed in all. Having tough time making decision on chemo. Any help would be appreciated.
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Magob, I see your tumor was small and only grade 1. Negative nodes. If I had that pathology and an oncotype 20, I wouldn't do chemo, but I'm 66yrs old. In your place, I think I would consult with at least two medical oncologists. Since you're ER and PR positive, you can take Tamoxifen, I assume. Wouldn't that lower the recurrence rate?
Best wishes with your decision-making.
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Thanks for the reply, Carole. Glad to meet you, even if it is under these circumstances. Tamoxifen was factored into my recurrence score, so if I take Tamoxifen, the recurrence rate is still 13%. I am told chemo will cut that in half. This is one tough decision.
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I am in the same boat as MAGOB. I got my score yesterday and it came back as 18. Even though I am stage 1, grade 1 because of my age (31) chemo is not off my plate for me. My Onc is leaving it up to me to decide on whether to have chemo or not. Not sure what I am going to do..like MAGOB said..this is a tough decision.
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MAGOB and jasminv1--Chemotherapy is most effective for patients who are her2+ or who otherwise have aggressive tumors. You are both Grade 1 and her2- with no nodes involved. I'd want to know the basis for the claim that chemo can cut the rate of recurrence in such relatively favorable cases by 6.5%.
Good article, ivorymom. It would seem that it's easier to consider a serioius health risk worth taking if you're not the person taking it.0 -
I was told a person's age can also be a deciding factor. I choose to have chemo because i was dx at 44. I had very little problems with chemo. My onco score was 25 ( 16% recurrence ) I was told because i am young, i have a longer time to stay cancer-free. Now i know some onc. may have said no cheno, but for me i felt okay with the chemo. Guys is can be a tough decision to make. Research, ask questions and get a second and even a third option if you need. Good luck.
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IvoryMom,Seabee and Marlenet - Thank you for your replies.
I think in my case age is the major factor in chemo not being dismissed. Onc said there are studies that suggest BC in Women under 35 is biologically more aggressive. I had extensive DCIS, 2 small IDC tumors and a mucinous carcinoma tumor. Luckily negative nodes. My Onc said chemo is not unreasonable for me when you add the factors of my dx, my age and an Oncotype score in the intermediate risk category. He said if I was 70 we would not have ever discussed chemo.
I am fully aware of the risks of chemo from doing research and Onc discussed them with me. What he could not tell me in my particular case tis whether the chemo risks outweighed my recurrence risk. I will continue to do research (that's all I have done since seeing my Onc yesterday
) so that I can be certain the decision I end up making is not one I regret.0 -
Good luck to you yasminv1! I am sure you will make the right decision. You are young and have a long life ahead of you. Like I said before, for me i had very little problems with chemo. ( thank god) I worked full time during my treatments too. Stay strong!0
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In case anyone is interested, here is one of the studies/articles my onc and I discussed regarding breast cancer in young women.
http://www.cancernetwork.com/display/article/10165/1413886?pageNumber=1
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DX at 51. Two lumpectomies. clear margins, 0/3 nodes (sentinal nodes) 36 radiations, now on tamoxifen for one more year, then will switch to Arimidex. Onco score 15.
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Dx at 50. Lumpectomy in Feb/09 then revison for margins in Apr/09 scheduled to start radiation as there was no node involvement. Decided that I couldn't live with the fear of recurrence and had a BMX with Te's in June/09.
I'm part of the TailorX Study and my ONCOTYPE score is 9. Sam, could you add me to the list?
Terri
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Terri: Congratulations on your score. Wait until you talk with your onc to find out what the % number is.....you have to determine whether the risks of chemotherapy outweigh the percentage of risk for recurrence. I was 58 at the time of dx and in my case - with a history of severe osteoporosis - the side effects of chemo most likely would have been disastrous. My Oncotype score was 9% - 13. Your percentage of risk should be quite a bit less than mine. But I would be very happy with your number "9".
I am so thrilled that this thread serves as a storage facility for everyone's oncotype results. I could not find my Oncotype DX paperwork today and I needed to get this information to send to someone - and here it is! This thread was started by Moodyk13 and now is in the second generation of care, assumed by samiam40! Thank you so much for keeping this for us!!!
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Deborah: Your score of 13 was well within the low score range so I'm glad that with your osteoporosis you didn't have to make that decision. That coupled with your size, stage and no node involvement facilitated the decision even more. I'm also very thankful for this thread and for Samiam40 for keeping it going. As you mentioned, I will have to wait to get my % from my ONC on the Aug 20th. I am relieved to say the least.............
Terri
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kk69Z: I'm 49 & had an oncotype score of 14, so no chemo, just radiation. I've been on tamoxifen for about 3 months now. I still haven't gotten a period since the tamox. How did you react. Prior to dx of BC i was still having regular periods to the day
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I have decided to go through with chemo. Thanks everyone for your input. I will be starting TC x 4 tomorrow, 8/13. After chemo I will be on Tamoxifen for 5 years. So my codes are: 11% Score 18, BLM, SNB, TC x 4, TMXF.
Samiam40: Thank you for keeping track of these scores.
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Samiam40: Went to see my ONC today and got the report from Genomic. My score is 9 with a (7%) recurrence rate. Please add me to the list and thanks for keeping this thread going. I'm part of the TailorX Study so my treatment plan is Tamox only.
My codes are " LMP, SNB, BMX, TMXF"
Thanks,
Terri
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I had a lumpectomy two weeks ago and got my pathology report a few days later. The BS made no mention of oncotype. Is this test only done when the nodes are negative? My sentinel node tested positive and the other five nodes removed were negative.
If the test was to be done would it have to be ordered shortly after surgery with fresh tissue samples or could it be done later?
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Mary: My understanding is that the test is done on node negative only. And yes, the test can be done at any time - it doesn't have to be a fresh sample. It is basically done to access a persons recurrence risk and to see if the patient would benefit from chemo. It's usually understood that a patient who is node positive would be undergoing chemo anyway. I had my lumpectomy in February and my Oncotype was done in July.
Terri
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Per the Oncotype website, the test is now also a possibility for post-menopausal patients who are node positive.
http://www.oncotypedx.com/PatientCaregiver/IsOncotypeRight.aspx?Sid=8
Note the paragraph under the four checkmarks.
Hope this is of some help.
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