NEW Oncotype Dx Roll Call Thread
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Hoping someone can help me.I was not eligible for the Oncotype test as my cancer was HER2 positive.But I have a friend who was diagnosed with breast cancer back in December,she had four lumpectomies,but now must have a mastectomy as they could not get clear margins..She had one lymph node positive of three, which they said was not the sentinel node.She is postmenopausal and they did the oncotype test,her score was ten. The doctors are telling her she must have chemo. Everything I have read indicates if they find a positive node, they remove more.She asked her surgeon if they would be removing more nodes during mastectomy and she said no.I am very worried about the treatment she is getting,isn't over 6 months a long time to be dragging this out?Plus they kept saying during the lumpectomies there is no cancer, then they call her a week or so later and say they did not get clean margins. She said her tumor was large,but I do not know a size.I also wonder why they are telling her she should have chemo with the low onco score.She is HER negative.
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I saw my ONC today and i feel like my plan is really hitting me hard!! A/C every 2 weeks for 2 months, three weeks off then Taxol every weeks for 3 months,then if that dont throw me into menopause tamoxfin for 5 years... hmmm, im home now and its all setting in.. has anyone done this? she said if that cell is floating around and does something it is considered forth stage cancer. I did not know this.my scores were low so i thought it would be different i guess. i feel like my bubble has been burst!!! i thought id get through this but not so sure now..
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Cheyenna--It looks to me as if your onc is determined to give you the most aggresssive chemo treatment, in spite of evidence that adriamycin (the A in AC) has a poor record of effectiveness on ILC and HER2 negative tumors. If I were you I'd insist on getting that oncotype test, and also seek a second opinion if your score is low and your onc decides to ignore it. Adriamycin is nothing to take casually. When the first onc I was referred to proposed it for me, I flatly refused, and when my oncotype score came back low risk, I decided against chemo of any kind., since the oncotype graph indicated no benefit for someone with my score, and this was consistent with other information I had gathered about chemo and ILC.
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I agree with Seabee....you don't even have any node involvement.
With all I have learned over the past year from these wonderful women.....if I were you....I would ask all the California women who they recommend for a 2nd and even a 3rd opinion so that hopefully 2 will agree on your treatment..... Ask on several of the threads including Natural Girls on the Alternative group....you MUST find your way to whoever is the BEST. Be sure before you do something that debilitating that you really need it. Remember...My first oncologist just recommends chemo for everyone. Unless you are sure you have the best Doc and you have no doubts about her recommendations....I would double check it. You can't undo chemo, so be sure you will never regret having gone through it. Once I found out my OncotypeDX score was ZERO....I realized that if I had done the chemo and then found out.....I would have died of anger.
There is no one right answer to this stuff unfortunately.....but you MUST believe in the rightness of your treatment. If you have doubts....ask questions until your don't. And then pray and see if you feel content with your choice. If all that happens...then do whatever you decided and don't look back and second guess.
Take whatever time you need. I found that the docs just matter of factly expected quick acquiescense to whatever they recommended. Women are making these decisions within days while they are still stunned from the diagnosis. They are making these life altering decisions in less time than they take choosing a new car or a new house.
Be sure before you choose. Be sure you choose what you can live with.
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Cheyenna...ask your onco if she can guarantee that if there was a cell floating around that the chemo would kill it. Has anyone had an oncologist tell them the % of cells chemo kills? Is it 100%? 95%? 90%? Do they know?
I researched until my brain was about to explode before I made my decisions. I gathered as much info as I could......stacks and stacks of printouts. And then I studied and highlighted them.
Then I decided.
You can do this. You're only a month out of diagnosis. You are still stunned. You didn't get breast cancer overnight so you don't have to make your decision overnight.
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Ghostie~ According to my onc the Oncotype DX test is not for triple negatives. I had a weird result on mine. It was a 71 and the DX test showed me a triple neg even though the hospital labs had shown my tumor to be ER+ at 91%. Rerunning the tests showed a much lower ER+ score. I guess I am just trying to say that I wouldn't get too worried about the high DX score since the test isn't designed for you if you are triple neg. On a positive note, my onc said to feel really good about the chemo treatment I was receiving because it was going to be VERY beneficial to me...
Cheyenna~ You will make it through this! xo First off,Luna5 is right, you didn't get this overnight and you don't try to comprehend it all at once. Also, you are 44... that's funny, I am too and when my husband and I went to the first appointment with my surgeon he spent the whole appt talking about this or that option, one for the "younger" patient, one for the "older" patient and I didn't get ANYTHING out of the appointment at first because I assumed I was the "older" and finally both my husband and the surgeon had to explain that I was the Younger patient.. .so trust me, you are young to get this disease... most BC dx are over 50. You will start to notice this too when you go to treatments and appts. Most times I am the youngest in the room!
I also agree that your treatment plan sounds pretty aggressive. My diagnosis was similar to yours, exept mine is IDC and grade 3 (even more fast growing than yours). I had a lumpectomy (my tumor at removal was 2.5cm though they thought it was a bit smaller on the ultrasound), I had a reincision to clear margins and now I am on Taxotere and Cytoxan (TC) chemotherapy every 3 weeks for 4 rounds, then I will do radiation treatments and tamoxifen (though my tumor was very low on ER receptors). Since you have so many questions, it may make you feel better to get a second opinion. The stage IV cancer that your onc is talking about is cancer that has moved to another part of your body (called "metastic"); my doctor was clear from the beginning that "because of my age" she wanted to attack this with every weapon available because at this early stage it is very conquerable but if it does come back somewhere else in my body there is no cure. Therefore I am being aggressive in treatment now because I don't want it to EVER come back. I have a family. I have a life. I am 44 now and want to kick these cancer cells in the butt now! LOL So losing my hair is something I have adjusted too... I figure it's better than losing my life.... (keep in mind, I did not come to this conclusion in a weeks time... it has been a process....) HUGS to you!Hope you all have a fabulous long weekend! hugs to all!
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Something Cheyenna needs to take into account is that she has ILC, not IDC. These tend to be treated the same way, but probably shouldn't be. They respond differently to chemo. Evidence suggests that MOST ILC (there are exceptions) respond better to hormonal therapy than to chemo. Cheyenna might find it helpful to do some browsing in the ILC discussion group.
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Cheyenne - I agree with all - get a 2nd opinion. As you are in Redding, does UC Davis have a cancer center? UCSF and Stanford both have amazing Breast Cancer programs - cutting edge- and would be good places to get 2nd opinions. It used to be that over 1cm = chemo, but with the oncotype tumor size is less important than other factors (location, oncotype, nodes etc)
Over 2 cm must be putting your onc. into a tizzy, but as all have posted, you need the oncotype test.
Pandazankar - re. your friend - possibly the size of the tumor is also what is pushing her onc. towards chemo, but I was under the impression that with an oncotype of 10, you would get little value from chemo. She also should get a 2nd opinion. However, if her tumor is really large or close to the chest wall the oncs. may want chemo.
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Just wanted to thank those who keep this thread alive. Wish this had been available in 2007 when I was diagnosed. Thanks also to those who use and believe in science and research instead of just going with whatever their doctor says like "if its over 1 cm its chemo". There are many women who have over 2cm diagnosis and have very low Oncotype scores and have not had chemo. It is not that we don't want chemo it is that the chemo does not work for those with low Oncotype scores. Thanks especially to women like Seabee that have done research and can explain to others the science and research behind decisions. Also, hope that everyone comes back to this thread as time goes by to update their status.
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I have tried several times to add myself to this list with no success.
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bump
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bump
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Samiam40,
11% = 17 Score; LMP; SNB; RAD; TMXF
Thanks for doing this, it is helpful.
Jacqui
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bump and awaiting my oncotype dx score
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10% = 16 Score, BLM,SNB,ALND,RAD, T/C 2, A/C 1, A/I, HSTY/OOPH
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For those waiting.....Samiam's last login was Feb 4, 2010
My 0 Oncotype score has never been posted. If someone wants this thread to continue, they will either have to figure out how to contact Samiam or start a new one. The last person in charge of this thread quit BC.org and Samiam agreed to take it over for her...but it now appears that Samiam is not checking in regularly as she has not been on for 7 months.
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Luna5, thanks for posting this information. I really believe that this thread is so important to all who are being diagnosed. I don't understand why the moderator doesn't take over the thread. Luna5, would you like to take it? If not, I don't mind taking it for 6 months then turn it over to someone else.
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bump
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Aug 24, sorry, no I would not like to take it over. I can barely keep up with the reading on the threads I am on. And...I have a bunch of trips scheduled and would not be able to be attentive enough to satisfy those wanting current updates.
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Let's just keep bumping this and make it easier for everyone to find.
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Ok Onco DX score 16 = ? risk Will see the ONC on Monday to have a line by line go over the scans I had today. So where does LVI (lympho vascular invasion) fit into all of this I wonder and wonder ......
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6% score 5 (beckward, age 48, BLM, SNB, no TMX, chemo or rads, so 14%)
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Rosesrx--LVI is generally regarded as a negative indicaiton, since it suggests that the tumor is aggressive and has found another route to travel besides the lyphatic system, namely the bloodstream. If this shows up on your path report, it could be used as an argument for chemo. However, if your tumor is only grade 1, your nodes are clear, and your Oncotype score is 16, reucrrence seems rather unlikely, LVI or no LVI. Once again, it's a judgment call. I didn't have it, but if I had, I would probably have taken chemo somewhat more seriously as an option.
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Ok so I opted for NO chemo with oncotype score of 16 and clear scans. Will be starting on tamoxifen in the next couple weeks. I forgot to ask about TailorRx study.
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Again, thanks to everyone for continuing to post on this thread. Thanks also to Seabee who always has a clear and concise helpful answer.
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Hello
OncoDx score of 28. I know it is in the grey area, but looking at the data there is a benefit. I will tell my Onc on Thursday that I will do chemo. Will do Tamox also.
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Hi,
I'm a poor statistic. My Stage I, ILC, 1 cm ER+, Lumpectomy, Radiation and Tamoxifen, Onco score of 9 just gave me a recurrence exactly 4 years after the first one in the same breast but this time it is 6 small tumors instead of one. I was so thrilled with my score of 9 which turned out to be wrong.
Sorry to be a downer but I don't want any of you to rely on it too heavily. I'm starting chemo very soon and will follow up with a masectomy and full skin removal from my chest....YIKES!
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Hey, I am newly diagnosed, first post here. oncotype dx score of 20=13% had bilateral mast.10/5 and onc suggests 4 rounds of C/T, not sure what to do. onc can't tell me what tx would lower risk of reoccurrence to. I am 46 yr old. Any advice would be greatly appreciated!!
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There's no guarantee that an oncotype score of 18 or below means that recurrence is impossible. It just means that it is less likely, but some people with a low score will get a recurrence. Some of the resesarch I read indicated that garden variety ILC tends not to respond to chemo, but pleomorphic and the uncommon HER2+ ILC might. I wish more research was done on the different types of breast cancer to help in making treatment decisions.
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So glad I found this thread! Have been reading and absorbing! Having my surgery in a little over a week.... the waiting is so hard!
I am super high ER/PR+ (allred score of 8 for both)...so although I have several things going against me (grade 3, high proliferation rate, younger age) I am hoping if my tumor stays small, If my lymph nodes are clear, if my oncotype score is low..... I can avoid the chemo and just hit my body with taxoxifen and possibly have ovaries removed. It's a lot of "IF's" but it gives me a wee glimmer of hope? Still have to prepare myself for the other though.
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