Onc says meds reduce recurrence by 20 absolute percentage points

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Hi all. From everything I read, it sounds like hormone therapy can reduce the risk of recurrence by up to 50% max. So if your risk of recurrence with the meds is 3%, your risk without it would be 6%. I was questioning my oncologist about this, and he insists that if I don't take the hormone therapy, I can take my 97% chance of no recurrence and subtract 20 absolute percentage points off of that, leaving me with only a 77% chance of no recurrence. He said it could be even worse that - he said you might even have to take 25 percentage points off, leaving me with a 72% chance of no recurrence. I can't find this information corroborated anywhere. Do you think he's just trying to scare me into taking the medicine? I know I brought this up before on the boards. But he insisted on this information again during my last appointment, and I am really wondering if this info is at all accurate....

He also said that aromatase inhibitors do not cause muscle pain, only the potential for joint pain that goes away once you use your joint. Overall, he's dismissive of side effects, insisting that the hormone therapy drugs are easy to handle. I told him about the side effects I was having, like foot and muscle aches, nausea, headaches, fatigue, irritability, worsened depression, and he said “it could be that none of these issues are caused by the medicine." He said that Lupron might have caused this and that it might take 3 to 6 months to improve, but might not improve at all. The whole idea of potentially not taking his medicines was unthinkable to him. This doctor also suggested that my sister take these drugs as a preventative, even though there is no BRCA, no family history other than me, and my sister does not have breast cancer.

Comments

  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    Your MO is Wrong. You are correct about the 6%, and that is for total recurrence rate, including local recurrences. If you are talking only distant recurrences, the percent is lower. Paging Beesie...

    So sick of this pattern of MOs lying to women to try to scare them into these meds.

    I suggest you look at the boards on AIs to see whether or not AIs cause muscle/joint/bone pain.

    Totally dump this guy. You deserve better.

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    Danee, I responded in your previous thread:

    Topic: MO said hormone therapy reduces recurrence risk by 20%?? https://community.breastcancer.org/forum/78/topics...

    .

    Here is some additional information:

    The 50% rate you mention is either for total recurrences or just local recurrences - not distant recurrences, which is the risk that is measured by Oncotype test. When you look only at distant recurrences or mortality (as an outcome of a distant recurrence) the benefit from Tamoxifen is in the range of 30% to 1/3rd. The benefit from the AIs is a few percentage points higher - about 35% (to 40%, max).

    Following is the definitive article about Tamoxifen benefit based on 5 years of Tamox. It is a meta-analysis of 20 trials representing data from over 21,000 patients:

    Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials


    "Breast cancer mortality was reduced by about a third throughout the first 15 years (RR 0·71 [0·05] during years 0–4, 0·66 [0·05] during years 5–9, and 0·68 [0·08] during years 10–14; p<0·0001 for extra mortality reduction during each separate time period)."

    image

    There was a later study that looked at 10 years of Tamoxifen usage. This study only compared 5 years of Tamox to 10 years of Tamox; there was no study arm that didn't take Tamoxifen at all. That said, by assessing previous studies and doing some calculations, they did determine that 10 years of Tamoxifen might reduce mortality rates in the years beyond 10 years (after diagnosis, assuming taking Tamoxifen the whole time) by as much as 48%. However the confidence interval on this result is not high, and the conclusion is that the benefit might be only 1/3. And in any case, even if the 48% reduction is true, when you average out the entire period of time, the risk reduction benefit is lower, because the rates over the earlier years are in the 30% t0 33% range.

    Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of oestrogen receptor-positive breast cancer: ATLAS, a randomised trial


    "By combining results from the previous trials1 with the new results from ATLAS, we can estimate what would be seen in trials of 10 years of adjuvant tamoxifen compared with no treatment. Table 3 provides, by time since diagnosis, the recurrence RRs from the trials of 5 years of tamoxifen versus no tamoxifen and from the ATLAS trial of continuing tamoxifen to 10 years versus stopping at 5 years, and multiplies these RRs together to estimate what would be seen in trials of 10 years of tamoxifen versus no tamoxifen. Table 3 also provides similar estimates for breast cancer mortality. The recurrence and, particularly, the mortality findings are remarkable, and suggest that in trials of 10 years of tamoxifen versus no tamoxifen, breast cancer mortality rates during the second decade after diagnosis would be almost halved, although the real finding is not the point estimate but the CI (which shows that the reduction could be as little as a third rather than a half)."

    Looking at AIs, you can assume results that are slightly more favorable. But still, the overall metastatic risk reduction for the AIs will fall in the range of 35%-40%, not 50%. And definitely not a 20 absolute percentage point reduction.

    Therefore if your risk (based on your Oncotype score, I assume) is 3%, your risk if you don't take endocrine therapy will be about 5%.

    Your MO is flat out lying to you (because surely he understands the real numbers and can do the math).

  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    Hi guys, thank you for your answers. I knew something wasn’t right with what he was telling me. I actually do want to take the medicines as long as they’re tolerable, I just want to have the facts on what benefit I’m getting out of them in exchange for tolerating side effects. He didn’t like me asking these kinds of questions!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2020

    Ugh that makes me so angry Danee78. It's infuriating, patronizing, and just bad medicine, to lie to patients.

    If you have a way to see a new doctor, that would be great. If you do, it would be worthwhile to give feedback to this doctor's practice/center (assuming he isn't a solo practitioner) about what he said to you.

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    Danee, I'm responding to your PM here because it would be great if someone else would chime it, if they have more information. I hope you don't mind.

    Your question was about lifetime risk vs. the 9 year risk that the Oncotype test provides. I have to admit that I'm surprised that this question doesn't come up more often since it's well established that recurrences can happen beyond 9 years, particularly for ER+ / HER2- cancers, which are the ones that get Oncotype scores.

    The problem, and I'd guess the reason why MOs don't provide this info, is that I don't think anyone knows the answer. The answer also depends on age - someone who is younger has many more years in which to recur than someone who is older.

    The models available on-line (CancerMath and PREDICT), while obviously not as personalized as the Oncotype score, do provide 15 year mortality rates - although that is probably roughly equivalent to (or even lower than) the 9-10 year metastatic recurrence rate that you get from the Oncotype report.

    http://www.lifemath.net/cancer/breastcancer/therap...

    https://breast.predict.nhs.uk/tool

    Additionally, if you look at the chart that I posted in reply to your last post (again mortality data rather than metastatic recurrence), you can extrapolate. At 10 years, for the average <age 45 patient, those not taking Tamox had a 28% mortality rate and those on Tamox. had a 21% mortality rate. At year 15, it was 35.9% (almost 30% higher) for the non-Tamox cohort and 25.3% (20% higher) for the Tamox group.

    In the second study I referenced above, the one that compares those who took Tamox. for 5 years vs. those who took Tamox. for 10 years, in the appendix there is a chart that shows distance recurrence rates at up to 15 years. This chart is for all age groups (which makes it somewhat less valid for someone young) and includes both node-negative and node-positive, and only includes those who took Tamoxifen either for 5 years or 10 years. But you can compare the 10 year recurrence figures to the 15 year recurrence figures:

    image

    Just using the example of those who took Tamoxifen for 5 years (orange arrow, left graph), the 10 year distant recurrence rate was 10.5% and the 15 year distant recurrence rate was 16.4%, an increase of over 50%.

    So all that to say that I don't think there is clear answer to your question, but certainly it appears that after year 9 or 10, for the next 5 years there remains a significant risk of recurrence, perhaps in the range of an additional 50% on top of the rate up to that point. Beyond that, there still remains some risk, but my guess is that at some point between years 15 and 20 the risk will start to decline.


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2020

    Beesie said “Your MO is flat out lying to you (because surely he understands the real numbers and can do the math).“

    Sadly, it is also possible he does not understand and can’t do the math. I went to a first MO visit with a relative, and it was appalling. I caught several factual errors, errors in standard of care, etc. and got the impression that this person was actually quite uneducated and/or unintelligent. Question: What do they call the person who graduated at the bottom of their medical school class? Answer: “Doctor”

    My relative and I typed up a letter and filed an official complaint, and commenced a battle with insurance to get her into a different oncology practice. Ultimately we were successful.

  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited May 2020

    Shetland, when I started reading your comments above, I was planning to say the exact same thing my mother (an RN) always said: "Never forget that fifty percent of all doctors graduated in the bottom half of their class."

    Beesie, your last paragraph is sobering.

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    Shetland and Beesy, for some reason Danee deleted her original post which takes the context away from all the responses.

    I can't believe that any MO with even the slightest bit understanding of Tamoxifen - even one who finished last in his class and doesn't stay up-to-date on the research - would insist that not taking endocrine therapy would turn a 97% distant recurrence free survival rate (or a 3% metastatic recurrence risk) into a 77% distance recurrence free survival rate (or 23% metastatic recurrence risk). That represents more than a 600% risk reduction benefit from anti-hormone therapy. Even if the guy can't do the math, he would have to know this is wrong. Assuming he treats other BC patients, he would have seen Oncotype reports for those with higher scores and for whom chemo would be recommended, and he would know that the order of magnitude difference (3% to 23%) is way out of line.

    True that some MOs can't do math and don't understand relative vs. absolute risk but from my reading of posts on this site, I think it's more common that MOs tweek the numbers to try to coerce patients into taking a treatment they recommend. I just don't know if I've seen a situation where it is this extreme and obvious.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2020

    Just wow. And it sounds like he also denied there could be side effects to AIs?

  • msphil
    msphil Member Posts: 1,536
    edited May 2020

    hello all I was on tamoxifen for 5yrs after cancer treatment was complete and I am this yr a 26yr breast cancer Survivor Praise God. Age 42 at diagnosis while making wedding plans for our 2nd marriages .msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast with reconstruction after 1 filling the expander hardened and temp 102 was removed. Then got married then 7wks rads and 5yrs on Tamoxifen.

  • dbrooks24
    dbrooks24 Member Posts: 2
    edited May 2020

    Beesie, your information is very useful. Thank you. You note in a post above that "The benefit from the AIs is a few percentage points higher - about 35% (to 40%, max)." Can you point me to the clinical studies that provide that data? My wife had a double mastectomy in December and is now on Femara, which is causing a lot of joint pain. We have an appointment this week with our MO and would like to have reviewed all of the clinical data showing the risk reduction for the AIs for her specific case. We've found the study showing the 20-year risk of recurrence after stopping endocrine therapy at 5 years, but still haven't found studies defining the recurrence risk during the first 5 years with and without different types of AI. Any insight would be appreciated.

    Thanks.

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    dbrooks, because Tamoxifen was already an approved and proven therapy when the AIs were being tested, to my knowledge all the trials of the AIs were done against a control group who took Tamoxifen, and none had an control group with the patients not taking any therapy. Because Tamox. was on the market and proven effective, a 'no therapy' arm would have been irresponsible. So there is no clinical trial data available comparing usage of AIs to not taking endocrine therapy at all, although the following meta-analysis does speculate on this. But there are numerous studies comparing AIs to Tamoxifen.

    You need to dig into the details of any of these studies to separate out total recurrences (which would include local, in the breast area recurrences) from metastatic recurrences. Overall, both AIs and Tamoxifen reduce the risk of local recurrences by more than they reduce the risk of distant recurrences (45%-50 or higher vs. 30%-40% at most) so a 'total recurrences' figure will be a bit inflated if you are specifically looking for the benefit related to metastatic recurrence (which is what is relevant when considering the Oncotype risk). Not all the studies break this out.

    The following 2015 report is a meta-analysis, so it incorporates all of the earlier studies:

    Aromatase inhibitors versus tamoxifen in early breast cancer: patient-level meta-analysis of the randomised trials


    image


    "The reduction in breast cancer mortality with aromatase inhibitor compared with tamoxifen is only slight, as expected in an already relatively good-prognosis population, but persists during years 0–4 and 5–9, significantly reducing 10-year breast cancer mortality. Overall 10-year mortality was also significantly reduced, even though about half the deaths were not due to breast cancer. Non-breast cancer death rates were similar with aromatase inhibitor and tamoxifen except that, after 2–3 years of tamoxifen, there appeared to be fewer such deaths with an aromatase inhibitor than with continuing tamoxifen. This finding was unexpected, not explained by any one cause, and not replicated in the other comparisons. Though likely to be a chance finding, it is reassuring for the safety of aromatase inhibitors."

    "We can infer from the present results the proportional reductions that would be achieved with 5 years of aromatase inhibitor compared with no adjuvant endocrine therapy. Treatment with tamoxifen for 5 years reduces recurrence by about half during years 0–4 and one-third during years 5–9, and reduces the breast cancer mortality rate by about 30% throughout the first decade and beyond. Therefore, 5 years of an aromatase inhibitor compared with no endocrine therapy would reduce breast cancer recurrence by about two-thirds during treatment and by about one-third during years 5–9, and would reduce the breast cancer mortality rate by around 40% throughout the first decade, and perhaps beyond. Though these proportional reductions in risk are approximately independent of nodal status, tumour grade, diameter, PR, and HER2 status, these prognostic factors substantially affect the absolute risk with no endocrine treatment, and hence substantially affect the absolute reduction in that risk produced by aromatase inhibitors."



  • dbrooks24
    dbrooks24 Member Posts: 2
    edited May 2020

    Thank you very much Bessie!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2020

    Beesie, not Bessie. Check out her avatar

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