Opting out of systemic treatment

Dcoded - For your stage with no lymph node involvement, chemo therapy is optional or at least not strongly recommended. That said, have you discussed your chances of recurrence with and without chemo with your MO? Doctors frequently recommend the treatment with the lowest chance of recurrence even if it's only a few percent less. It is recommended to take an AI or Tamoxifen for any ER+ carcinoma because it needs estrogen to grow. I'd advise you to discuss the chances of recurrence with your MO with/without chemo and/or Tamoxifen so you can make a more informed decision. I don't know if you are pre or post menopausal, but if post you might find the SEs from an AI easier than Tamoxifen.

Hi DCODED:

I second the suggestion for a second opinion regarding endocrine therapy (e.g., tamoxifen).

I hope you will pardon me if you are already aware of the information below, but this seems to be an area of misunderstanding among those receiving the Oncotype test for invasive disease.

Do you have a copy of your Oncotype test results, and did your MO explain to you that the estimate of recurrence risk associated with a particular Oncotype Recurrence Score (e.g., 26 in your case) in node-negative (N0) disease is a:

• 10-year risk of distant recurrence after 5 years of Tamoxifen

That is an estimated risk of distant recurrence, not local recurrence, so it is an estimate of the risk of recurrent metastatic disease occurring in the next ten years.

Secondly, it is an estimate of the 10-year risk of distant recurrence without chemotherapy, but WITH Tamoxifen, specifically 5 years of treatment with tamoxifen.

Therefore, if you decline tamoxifen, your 10-yr risk of distant recurrence would be higher than estimated by the test and as shown in your report.

Anyone receiving an Oncotype test for node-negative (N0) disease should be sure to obtain expert advice on their estimated risks of distant recurrence in all three scenarios. Before declining endocrine therapy, consideration of **(1) and **(2) is necessary:

**(1) estimated 10-year distant recurrence risk without tamoxifen (from your MO, based on estimated tamoxifen benefit)

**(2) estimated 10-year risk of distant recurrence with 5 years of Tamoxifen (from the Oncotype report, graph 1)

(3) estimated 10-year distant recurrence risk with 5 yrs tamoxifen and added chemotherapy (e.g., from the Oncotype report, graph 2 plotting 10-yr distant recurrence with tamoxifen alone versus with tamoxifen plus chemotherapy against RS, plus histogram below, with an explanation from your MO regarding possible limitations of the "predictive" value of the test for benefit of chemotherapy in the intermediate range)

Regarding the nature of the estimate of recurrence risk being with tamoxifen (with "Tam alone"), see Graph 1 in this sample report for node-negative (N0) with a Recurrence Score result of 6 (six):

http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Ordering/ReadingTheReports/Node-NegativeReport.aspx

In this example, a Recurrence Score result of "6" (see X-axis of Graph 1, horizontal axis of graph) is associated with a 10-yr risk of distant recurrence with tamoxifen alone of about 5% (see Y-axis, vertical axis of graph,and text to left of graph).

With a Recurrence Score result of "6" (RS = 6), the risk with Tam Alone may be a little higher or lower than 5%, as indicated by the "Confidence Interval" shown parentheses (95% CI = 3% to 7%) as shown to the left of Graph 1.

Note: The 10-year Risk of Distant Recurrence with Tam Alone (and the 95% confidence interval ("CI")) vary by Recurrence Score. Therefore, each person should study Graph 1 and the information at left of Graph 1 on their personal report to obtain a clear statement about the estimated risk with Tamoxifen alone based on their particular Recurrence Score.

As noted by others above, many find they do tolerate tamoxifen. You may wish to try it out to see how it affects you personally, before finalizing your decision.

I am a layperson with no medical training. The above is for information only, so please be sure to discuss your report content with your MO to ensure you receive accurate, current, case-specific expert advice regarding report content and estimated recurrence risks.

Sending positive thoughts your way as you come to a decision of what is best for you.

BarredOwl

[EDIT: Item (3) information source revised]

I can’t really speak to the chemo question, as it was never on the table in my case, but as far as Tamoxifen goes, most of the quality of life side effects (hot flashes, mood swings etc) tend to be mild for most people and most importantly go away once you stop taking the drug, so it is relatively easy to give it a trial run and if it becomes too onerous, then quit.

Personally, I’ve been on Tamoxifen for a little over 3 years now and find it very doable. If anything, it’s evened out my moods and relieved me of some of my annoying perimenopausal symptoms (frequent heavy periods, sore breasts for half my cycle, etc).

Everyone reacts differently, but unless you are at particularly high risk of one or more of the most serious side effects (blood clots and uterine cancer - both of which are very rare in most people) I would highly recommend giving it a shot, especially if you do go ahead and decline chemo. As I said earlier in my post, you can always stop if you feel like you can’t handle it, but at least you would know you tried.

Eh, one of the good things about hormonal therapy is that the side effects are typically temporary. I'm not on Tamoxifen, but am on an AI (aromasin) and the side effects are mild for me. If you start Tamoxifen and it sucks, you can stop and that is that. The side effects should go away. If you start Tamoxifen, and the side effects are mild, you may decide to stick it out and then reduce your chances of recurrence. Your oncotype score was relatively high; at the very least, you could try Tamoxifen and see how it goes for you. Best wishes, whatever you decide.

Article on the BBC yesterday said taking AI for 15 instead of 5 years helps lower the risk of cancer coming back. While I realize its possible for it to come back and not be metastatic I'm not sure it really happens that way often. Metastatic is when you get breast cancer in places other than your breast (ie: bones/liver/lungs... other body parts). 30% of breast cancer re-occurs as metastatic although since its not tracked as stage IV unless you are diagnosed off the bat that way, I'm not sure who came up with 30% and how.

http://www.bbc.com/news/uk-36455719

Research, ask around, talk to your doc and then get a second opinion and if your still not comfortable get a third. Hopkins has an online free "ask us a question" board that may or may not prove helpful.

http://www.hopkinsbreastcenter.org/services/ask_ex...

Someone earlier stated a surgeon will recommend surgery, an oncologist will recommend chemo and a radiologist will recommend radiation... no truer words spoken. Its not bad, its just what they do and what they know so its what they recommend.

Remember too that as much as the rush is on when you are diagnosed to do something about it, you are allowed to take a little time to ask around and research and talk to multiple doctors before taking action. Try not to let the information overwhelm you and keep asking till your questions are answered. You are your own best advocate.

Best wishes and prayers for good guidance and support for you.

Mascarecrow