My wife is 30 and was dx with bc in March. It's a blessing that it's found early. She did a lumpetomy last month, and the tumor was 0.9cm, Stage 1, Class 2, ER+, Node-. Then she did the Oncotype Dx test and we got the result yesterday. She got a very low score of 4. This means there's only 4% recurrence with hormonal treatment according to the statisitics.
We have been praying for this that she wouldn't need to go thru chemo all along. Yet still her onc recommended chemo with Cytoxan and Taxotere because of her young age, but it'll be our call. We struggled with the decision. She didn't want chemo, and I think the benefit of increasing the odd by around 2% is not worth a slight risk of delayed side effect of developing blood cancer (due to Cytoxan) and other side effects.
We decided not to do chemo, but she'll need to go through 45 radiation treatments (15min each) and 5 yrs of taxmoxifen nonetheless. At times I still have worries whether we make the better choice. What would you do?
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MAMHOP Joined: Aug 2007 Posts: 596 |
May 15, 2008 09:46 pm
MAMHOP wrote:
First of all, I would get a second opinion from a major cancer center. My Oncotype score was 16 and I chose not to do chemo, but I got two opinions (one from the Chief of Oncology at a major teaching hosital) and both said no chemo. My tumor was smaller .3cm, was a lower grade (grade 1) and pure tubular which is supposed to be favorable. I have yet to figure out why I have a score of 16 since I expected it to be lower. 4 is really low -- that's great -- I would be tempted to forego chemo as well, but I would only feel good doing that if my doctor agreed. I had two opinions that agreed no chemo. If your wife really doesn't want to do chemo, I would get another opinion. But I have heard that younger women often get chemo (I was 47 when diagnosed -- still young, but not 30) -- Good luck -- I know it is an agonizing decision. I hope that I made the right one myself. M. |
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rubytuesday
Joined: May 2006 Posts: 2102 |
May 17, 2008 09:18 pm, edited May 17, 2008 10:17 PM
by rubytuesday
rubytuesday wrote:
From what I've read, the purpose for giving young women chemo is to put them into menopause thus reducing their estrogen levels. I would also get a second opinion at a big breast center. I had two tumors, both tubular, one 1.2cm and one 1.6cm and my oncotype score was 11 with a 7% chance of recurrence over the next 10 years. I did not do chemo, nor was it recommended. For the small percentage of benefit, it doesn't seem worth it but I do believe your wife's age is playing into the oncologist's decision...it could be a CYA operation on his part.....get a second or even a third opinion. Best wishes! |
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wishiwere Joined: Dec 2007 Posts: 1342 |
May 17, 2008 09:52 pm
wishiwere wrote:
You didn't mention the Her2/neu status? do you know that? I think first, you need to ASK the first onco WHY he recommends it when the recurrence is so low. Then yes, a second opinion is in order for peace of mind for you both! wishiwere
Dx 9/21/2007, ILC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2- |
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revkat Joined: Apr 2008 Posts: 131 |
May 17, 2008 10:17 pm
revkat wrote:
and to follow up on Rubytuesday, if the reason the onco is recommending chemo is to reduce estrogen levels, ask what other options might be suggested. Dx 1/27/2008, IDC, 2cm, Stage IIa, Grade 2, 1/20 nodes, ER+, HER2- |
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pabbie Joined: May 2008 Posts: 26 |
May 24, 2008 08:06 pm
pabbie wrote:
I have an onco-type score of 20. I've had 2 surgeries (lumpectomy) & am now having radiation treatments. One onc feels "ok" with no chemo, but radiation onc says "yes". I've had surgery, chemo, and radiation before for another cancer in which the cancer treatments took the wind out of my sails. (fatigue) I'm on the fence regarding chemo. Any suggestions/comments? |
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frankrause Joined: Mar 2008 Posts: 16 |
May 28, 2008 05:35 pm
frankrause wrote:
I am 57, my score was 16, I was stage 2 with negative nodes, my oncologist said no chemo, I took 30 rounds of rads. and now on Aremidex and doing great. I am surprised her doctor said chemo, get a second opinion. |
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pabbie Joined: May 2008 Posts: 26 |
May 31, 2008 03:57 pm
pabbie wrote:
Frankrause, thanks for your comment. I'm 50, stage 2 with 2 node involvement-Oncotype 20. I'm currently at treatment #18 with radiation and more to follow. Thanks for the Arimedex advice. I'll suggest it to my onc because I am post-menopausal. I was put into premature menopause due to chemo and radiation 9 years ago; but I think this counts as menopause. It sure does feel like it. Thanks again. |
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sonrisa Joined: Sep 2007 Posts: 8 |
Jun 3, 2008 08:07 pm
sonrisa wrote:
Hi, I was diagnosed last year at age 39. My tumor was 2.2 cm, stage 2A, ER+, node -. I had a lumpectomy and radiation. My oncotype was 10 with a 7% chance of recurrence. My oncologist did not recommend chemotherapy for me. It seems that your wife is in a better situation than I was so I am surprised that chemo was recommended to her. I would definitely get a second opinion. I hope all goes well for you all. |
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suebee92 Joined: Apr 2008 Posts: 73 |
Jun 3, 2008 10:48 pm
suebee92 wrote:
hello!
Dx 2/1/2008, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- |
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jdg1 Joined: Oct 2007 Posts: 524 |
Jun 6, 2008 12:53 pm
jdg1 wrote:
I was 42 at diagnosis and my Oncologist definately said chemo. With younger woman they want to be as aggressive as possible especially if it is Hormone related. I did not have a problem with having the chemo done once I started it. I figure I better throw everything I have at this if I want to be around to see my Grandkids grow up and even my 8 yr old son. I had a double mastectomy so no radiation for me. Good luck to your wife and yourself. June Infiltrating Ductal In-Situ Stage IIB Grade 1 No node involvment, ER/PR + HER 2 -, Oncotype DX 17
Dx 5/30/2007, IDC, 0/2 nodes |
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AMANN Joined: Jun 2008 Posts: 9 |
Jun 16, 2008 01:10 pm
AMANN wrote:
Hello, I am 43 y.o. was diagnoised at 42 y.o. about 2 months ago. I had stage IIA no nodes, HR positive. and an Onco score of 20 which gives me a 13% chance of reaccurance with hormone therapy and 6.5% chance with chemo, I am on the fence as to what way I should go. my ONcologist says it's my decision. I am worried about the chemo because I already have some health concerns, sleep apnea, acid reflux, and blood disorder that causes slight anemia. Please can someone help me with my decision. Than you, |
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collector Joined: Apr 2008 Posts: 114 |
Jun 16, 2008 01:18 pm
collector wrote:
My score was 17 and both oncs I consulted with recommended the chemo. Even with AIs and chemo, my recurrence rate will still be 5%. One said that the upper limits for the low recurrence section of the chart will need to be adjusted downward and she expects that to happen soon. With your other health issues, perhaps you should consult with your other doctors. Some types of chemo treatment are not as hard on heart issues. I don't know mush about the anemia problems since that is not an issue for me right now. Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- |
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wallycat Joined: Apr 2007 Posts: 662 |
Jun 16, 2008 01:45 pm, edited Jun 16, 2008 01:46 PM
by wallycat
wallycat wrote:
Collector, that is interesting your onco thinks it will get lowered. My onco thinks it will get raised. I guess we don't know till we know plus add to that cancer is a crapshoot and no telling what it will do regardless of our treatment (I hate that part). I was 1 month shy of 50 when Dx (read sig line for dx). I scored 20 on the onco and I had surgeon, two oncologists, and my radiation onco consult all say that tamoxifen would give me as much benefit as chemo...and chemo carries its own set of problems/side effects. Chemo would have given me a 2-3% benefit which all docs seemed to think was not worth doing. My onc said over 4% benefit is a definite "do it." ILC is also less responsive to chemo (according to some MD Anderson reports), so I opted out. Of course I second guess myself on and off, but hope if the monster ever comes back, there will be more in the arsenal to fight it. Best to all you ladies having to make this difficult decision --and to the men who are strong and stand side by side with your women and help out! Dx 4/07; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade II, 0/5 nodes. Bilateral Mast., tamoxifen
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collector Joined: Apr 2008 Posts: 114 |
Jun 16, 2008 01:53 pm
collector wrote:
Wallycat, you're right. It's a crapshoot! And I'm sick of playing it after only 2 months. I did go with the T/C chemo because I read somewhere that it was a little more effective for ILC but I don't think anyone really knows. And it will do nothing for a new primary on the other side or elsewhere..... Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- |
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otter Joined: Jan 2008 Posts: 1733 |
Jun 16, 2008 02:32 pm
otter wrote:
The break-points for low, intermediate, and high Oncotype scores are still the same as they were when the test became available: <18 = low risk; 18-30 = intermediate risk; >30 = high risk. What's important to understand is that those categories of low, intermediate, and high, and the cutoffs that form them, are artificial--they're just estimates. Think about it--what's "low" risk to one person may not be "low" risk to someone else. The company emphasizes that the relationship between Oncotype score and risk of recurrence is a "continuous variable." That means a score of 8 has a much lower risk of recurrence than a score of 16, even though they are both in the "low risk" category. Similarly, the risk of recurrence with a score of 19 ("intermediate risk") is much closer to the risk with a score of 17 ("low risk") than it is to the risk with a score of 29 (also "intermediate risk"). The report includes a graph that calculates the actual percentage recurrence risk for that person's exact recurrence score. The person's actual recurrence risk (%) is the number that's important, rather than "low", "intermediate", or "high" risk. The study design for the TAILORx clinical trial does use lower cutoffs when deciding what to do for women enrolled in that study. Women with scores <11 will get hormonal therapy only; women with scores >25 will get chemotherapy and hormonal therapy; and women with scores of 11-25 will be randomly assigned to get chemotherapy plus hormonal therapy, or hormonal therapy alone. That change in the cutoffs doesn't mean there has been agreement that the interpretation of the test results should change to those lower numbers. The cutoffs in the study were lowered to make sure women who had agreed to participate in the trial did not end up being under-treated, or provided therapy that was less effective than the current standard-of-care for ER+ BC. For example, the designers did not want a woman with a score of 29--"intermediate risk"--being denied chemo because she was on the study, when both she and her onco might have agreed to chemo if she was not on the study. So, what that means is that a score of 12 or 14 ("low risk" for interpretation but randomized to get chemo/no chemo in the study) is no scarier now, and correlates with no greater risk of recurrence now, than it did when Oncotypte testing first became available. The whole reason for doing the TAILORx trial is to better define the recurrence risk for mid-range scores (11-25) and the benefits of chemo for those women. My onco said that's the group for whom there is the most uncertainty about chemo--he told me, "We just don't know." Here's the Genomic Health website: http://www.genomichealth.com/oncotype/about/hcp.aspx Here are some links to information about the TAILORx clinical trial: http://www.cancer.gov/cancertopics/factsheet/TAILORxQandA http://www.cancer.gov/clinicaltrials/ECOG-PACCT-1 So, the bottom line is that the cutoffs haven't changed yet, but it really doesn't matter because your oncos should be using your actual "recurrence risk" numbers rather than the broad categories anyway. Once the results from the TAILORx trial are available, things might change; but that will be awhile. otter Dx 1/14/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- |
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IllinoisNan
Joined: Sep 2007 Posts: 31 |
Jun 16, 2008 03:19 pm
IllinoisNancy wrote:
My oncologist thinks the safe number will go up after the study is finalized. I just hope they find the cure soon for all of us. Dx 10/9/2006, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR-, HER2- |
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