Stage1 treatment

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Yogatyme
Yogatyme Member Posts: 2,349

I recently had BMX for stage 1 micropapillary carcinoma w no lymph node involvement. My cancer was only 7mm. I elected for BMX bc I have BRCA1 mutation. The MO has sent tissue for further examination for potential benefit of chemotherapy in addition to Femara. The more I read, the more I’m questioning any further treatment of any kind. I am 68 years old and other than this cancer am a very healthy person. I am unsure that the benefits of treatment outweigh the risks of SE. In using the breast cancer math tool online, the results indicate that Femara only improves longevity by 86 days. Has anyone declined further treatment after surgery and if so, what has your experience been?

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    Given your age and your small tumor, your question is certainly reasonable.

    My suggestion is that you wait for the Oncotype results (I assume that is the info your MO is getting). And if your MO doesn't offer this up, be sure to ask him to run the Oncotype RSPC model. It's a quick computer model he should have access to from Genomic Health (the Oncotype people).

    The Oncotype results you'll get will be a score that relates to your metastatic recurrence risk either with endocrine therapy alone, or with chemo + endocrine therapy. The difference between these two figures determines the benefit of chemo and whether chemo is therefore recommended or not. The problem is that the results you will get for your Oncotype score will be the same results given to all patients over age 50 who have the same score (there is a different set of results for those under 50), without regard to your older age and much smaller than average tumor size. The Oncotype RSPC (Recurrence Score Pathology Clinical) takes your Oncotype score and factors in your age, your tumor size and the tumor grade. Since those three factors are all in your favor, your RSPC metastatic recurrence risk likely will be lower than the generic risk figure you receive with your Oncotype score.

    Once you know your risk level with endocrine therapy (the Femara) alone, knowing that Femara reduces metastatic risk by about 1/3, you can easily figure out what your risk would be without taking any treatment. Then you can decide if that's a risk level you can live with.

    One thing to keep in mind about on-line model is that the 86 days of extra life is an average for everyone who has a similar cancer. What it really means is that of 100 people like you, 97 may get no survival benefit from endocrine therapy, while 3 survive on average an extra 8 years.

  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited September 2019

    Thank you so much for the information, Beesie. It is very helpful. I am grateful for this community and all the good information I am getting and for not feeling so alone in this journey

  • Totallytubular
    Totallytubular Member Posts: 62
    edited September 2019

    Hello, I was borderline for chemo treatment.. make sure to get a second opinion or even third about a treatment plan.

    I ended up doing the chemo as a back up. and yes, the oncotype test will tell you whether you your at risk for re-occurance.goo luck to you.

  • Goldfish4884
    Goldfish4884 Member Posts: 75
    edited September 2019

    Hi Beesie: Such good info regarding age and Oncotype score but I am not sure I understand that all people over 50 have the same risk with the same score. I am 71 diagnosed at age 69. My oncotype score is 16. I have tried all 3 aromatase inhibitors and Tamoxifen as my last resort, could not tolerate any of them. Am off the meds now and trying to decide what to do regarding my quality of life at this age. My onco doc says my risk without AI's or Tamoxifen is about 20% but with an AI or Tamoxifen it is down to 8-10%. Its a hard decision to make, whether to take my chances or suffer thru the side effects. I guess my question to you is everyone over 50 with the same score has the same percentage risk. I guess I'm confused, never knew this. If you could help clear this up for me, thanks for the info.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    "Such good info regarding age and Oncotype score but I am not sure I understand that all people over 50 have the same risk with the same score." "I guess my question to you is everyone over 50 with the same score has the same percentage risk. I guess I'm confused, never knew this."

    Goldfish, my point in my previous post was that all people over age 50 who have the same score most certainly DO NOT have the same risk. However the generic report that everyone receives from Genomic Health along with their Oncotype score does in fact show the same risk for everyone. That's the problem. For you, at age 71 with a small (1cm) grade 2 tumor, your risk with a 16 score will be less than someone aged 51 with a 16 score who has an identical tumor, and certainly less than the average for a 16 score, which would assume a younger age and a larger tumor. This is why the Oncotype RSPC would be so relevant to you, because based on your age and pathology, it almost certainly would give you a lower recurrence risk than the generic report that came with your results.

    As for what your MO told you, the 8%-10% with Tamoxifen was accurate (as an average for all patients) for what was known at the time of your diagnosis, however the more recent results from the TAILORx study, released last year, actually estimate the recurrence risk for a 16 score to be much lower.

    Here is a sample report with the pre-TAILORx results. You can see the 10% recurrence risk, after 5 years of Tamoxifen, for a 16 score.

    image

    And here is a graph from the TAILORx report, with the newer results. These are the results that those diagnosed now would receive. This graph is specifically for those over age 50. Here you can see that with 5 years of Tamoxifen, a 16 score equates to a 4% 9-year recurrence risk:

    image

    As for what your risk would be if you didn't take Tamoxifen or an AI, the Genomic Health people do not provide this information. However many studies on these drugs have clearly and consistently shown that the Tamoxifen benefit falls in the range of a 1/3 reduction in metastatic risk. AIs might (or might not, depending on the study) provide an addition 10% benefit.

    Status of adjuvant endocrine therapy for breast cancer

    "The first Oxford EBCTCG meta-analysis involved almost 30,000 women in 28 trials with either node-positive or node-negative BC who were randomly assigned to tamoxifen (or not) for about 5 years []. It demonstrated a clear reduction in mortality in women at least 50 years of age treated with tamoxifen (P <0.0001) and a reduction in the annual odds of death during the first 5 years of about 20%. Subsequent analyses showed that the proportional risk reductions produced by tamoxifen were little affected by entry age or nodal status [].Long-term follow-up has greatly strengthened these findings. The most recent meta-analysis with a median follow-up of 13 years showed that, in ER+ disease, tamoxifen for about 5 years achieved a reduction of yearly BC mortality of about a third throughout the first 15 years"

    So if someone with a 16 Oncotype score doesn't take Tamoxifen or AIs, doing backwards math using the Oncotype score results, a 33% - 40% reduction in risk from Tamoxifen or the AIs would take a 10% risk up to 15% - 16.5% - not the 20% that your MO told you. Using the new TAILORx results for a 16 Oncotype score, a 4% metastatic risk with Tamoxifen or an AI would become a 6% - 6.6% metastatic risk if the patient chose to not take these meds.

    Hope that is clearer and makes sense. If you can, I would suggest that you ask your MO about the Oncotype RSPC. There is no reason why this can't be done now, after the fact, since it's a simple computer model and all your MO needs to do is input your Oncotype score (16), your age at time of diagnosis, the grade of your tumor, and the size of your tumor. This will provide you with a recurrence risk estimate, assuming you take Tamoxifen or an AI, that is more accurate for your specific case. Then if you don't want to continue with the AIs, it's just basic math to figure out what your risk would be.





  • Goldfish4884
    Goldfish4884 Member Posts: 75
    edited September 2019

    Beesie: Thank you so much for the info. I read thru it a couple of times to try and understand but it sounds like my risk is 6% or so if I dont take the AI's or the Tamoxifen. I will definitely talk to my oncologist next month when I see him. Thanks again.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    This calculator allows you to see difference between not using hormone therapy vs not

    I did note that there was no different between tamoxifen vs AI drugs. This does not agree with another study that showed er+ pr- respond significantly, twice as well with AI drugs vs tamoxifen. For er+ pr+ the study was about equal on tamoxifen vs AI.

    My mo thought AI drugs were right for my case.

    http://lifemath.net/cancer/breastcancer/therapy/in...


  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    Meow, the jury is out on whether or not Tamoxifen is less effective than AIs for those who are ER+/PR-. The ATAC study did indicate this to be the case, but subsequent studies have not supported this finding. I asked my MO about it and he said that it is no longer believed to be true that AIs are more effective for those who are ER+/PR-. That said, for all post-menopausal patients, most studies have shown AIs to be anywhere from 10% to 30% more effective, although this may not hold out over the long term.

    From the article I referenced above:

    Status of adjuvant endocrine therapy for breast cancer. (2014)

    image

    .

    And other articles/studies: (Note that because some of these studies are meta-analyses, some of the data may be replicated in more than one of my references.)

    Predicting Endocrine Therapy Responsiveness in Breast Cancer. (2009)

    image

    .

    Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials. (2011)

    image

    .

    Aromatase inhibitors versus tamoxifen in early breast cancer: patient-level meta-analysis of the randomised trials. (2015)

    image

    image

  • april1964
    april1964 Member Posts: 223
    edited September 2019

    hi ! I just put in information in life math for my best friend who has bc but is somewhat technology challenged and the outcome was this :

    Cancer Mortality: 19.9% expected 15-year Cancer Death Rate.21.1% 15-year Kaplan-Meier cancer death rate

    Question: what does that mean? Any way to interpret this Thank you in advance for your input!!!


  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    April, that information is difficult to interpret without knowing which CancerMath calculator you used, and what you input as treatment.

    I find that using the Treatment Outcome Calculator is the easiest to interpret and most useful, because you can assess how much each treatment increases survival rates. The results need context, and this calculator provides the context.

    Can you share the details of what you input?

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    I believe the problem is not enough data, there aren't as many er+ pr- cases. I only know of 2 places that are studying this and what pr- means. Also note that most er+ pr- cases the er has a lower percentage of receptors. The Australian group has focused on whether adding progesterone can be helpful for er+ pr+ cases.

    My oncologist has been looking, he is in touch, he told me that nothing definitive has come out on the what the er+ pr- situation is. The idea that the cancer has stopped feeding on estrogen is old news, behaving more like triple negative and tends to have more aggressive characteristics. He told me he goes to all the conferences and is always looking for new information. So glad I have him, he is totally devoted his work to breast cancer and helping his patients.

    I have seen the ATAC tamoxifen vs anastrozole initially 2004 study then another 2014 study.

    What is the date on what you posted Bessie?

    Never mind Beesie I see the date is 2009. The 2014 one I saw made note of the sample group being very small. Why aren't they actively collecting more data you would think research money would be there. Instead of handing out pink body sponges and nice soap out at mammograms they could use the awareness money to look at effective treatments.

    Beesie keep in touch love seeing any information that you find.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    Meow, the 4 studies I posted are from 2009, 2011, 2014 and 2015. I will edit my post to make note of these dates.

    If you look at the meta-analysis data from the last study (the Excluding ATAC results) itappears that in total they looked at over 2,600 ER+/PR- women.

    Edited to ask: Is it just my system or do other people have problems getting this site to accept spaces between words and periods at the end of the sentence? I have tried to edit the "itappears" in the above paragraph 3 times and when I press save, the space I put between the words always disappears.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    I don't see the 2600 er+ pr- sample. What I do see is a mention that no definite conclusions are made tamoxifen vs Anastrozole as previous study indicates. Do you mean 2006 out of 5 thousand something? No details given on who they were.

    Still there is no conclusion on what is causing the loss in benefit from endrocrine therapy. Still very interesting to see all the different factors cross correlations.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    This is kind of what I was talking about. My son just got his degree in Applied Computational Mathematical with Biological Sciences.

    https://www.fredhutch.org/en/news/center-news/2017...

    Big data collection and sharing, the way of the future to get a better idea on treatments.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    image

    Meow, sorry it's not very clear but you can access the supplemental charts from the link I provided. The numbers for ER+/PR- (all studies but ATAC) are 1308 women on AIs and 1329 on Tamoxifen. This is about 3 times the number of ER+/PR- women in the ATA study.

    The conclusion was that "the hypothesis from ATAC of a more extreme recurrence RR in ER-positive PR-negative than in ER-positive PR-positive disease is not supported by evidence from other trials." "Not supported by evidence" seems definitive to me. The ATAC study clearly showed that Tamoxifen is less effective than AIs for those who are PR-, but from this meta-analysis and my reading, it appears that subsequent studies have not replicated those results. Instead subsequent studies have found that Tamoxifen and the AIs performed equally well on ER+/PR- as on ER+/PR+.

  • april1964
    april1964 Member Posts: 223
    edited September 2019

    Beesie, i can’t remember what I put into the boxes... my friend is Pr- though. I know what you mean about periods not showing at the end of a sentence... what works to avoid that is to hit the return key at the end of the sentence and the period will not disappear.


  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited September 2019

    I got my oncotype today...19. No benefit from chemo and a 6% risk of recurrence w letrozole, 12% risk w no treatment. Did not have the RSPC value. I thought that if the risk w an AI was a certain percentage, then the risk without is an additional risk of 33% (eg: 33% of 6%). According to MO, it doubles the risk. Any clarification is welcomed.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    Great news on the Oncotype score, Yogatyme.

    As for the benefit from the AI, according to the meta-analysis info I linked in my September 19th post 12:00 pm post above, there is a 1/3 metastatic/mortality risk reduction benefit from Tamoxifen.

    "The first Oxford EBCTCG meta-analysis involved almost 30,000 women in 28 trials with either node-positive or node-negative BC who were randomly assigned to tamoxifen (or not) for about 5 years [12]. It demonstrated a clear reduction in mortality in women at least 50 years of age treated with tamoxifen (P <0.0001) and a reduction in the annual odds of death during the first 5 years of about 20%. Subsequent analyses showed that the proportional risk reductions produced by tamoxifen were little affected by entry age or nodal status [13].Long-term follow-up has greatly strengthened these findings. The most recent meta-analysis with a median follow-up of 13 years showed that, in ER+ disease, tamoxifen for about 5 years achieved a reduction of yearly BC mortality of about a third throughout the first 15 years."

    That's the same that I heard from my MO, who said that endocrine therapy (either Tamox or the AIs) provides approximately a 30%-35% metastatic risk reduction, noting that AIs provide about an additional 10% risk reduction benefit versus Tamoxifen. So if Tamox provides a 33% (1/3) benefit, AIs possibly provide 35%-36%. Therefore a 6% risk if you take an AI would increase to at most a 9.4% risk without the AI. (The math: 36% of 9.4% is 3.4%, netting the risk down to 6%. Or another way, 6% is 64% of 9.4%, i.e. a 36% reduction.)

    If you look at the PREDICT or CancerMath on-line calculators, either putting in your own info or even just random info, you will see that both models reduce mortality by 1/3 when you input that the patient will be taking an AI.

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

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

    From reading here, it seems to not be unusual for MOs to throw out a 50% risk reduction benefit rather than the 1/3 benefit. I think they do this to encourage patients to take Tamox or the AI, by somewhat inflating the benefit. And when looking at local recurrence risk reduction, the reduction benefit is in fact closer to 50%. That's not what is measured by the Oncotype score (which presents only distant/metastatic risk) but this benefit is relevant to those who've had a lumpectomy and who may face a significant local recurrence risk.


  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited September 2019

    Thanks so much, Beesie!! Your answer was closer to my understanding for sure.

  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    Meow13,

    Your oncologist seems very good. I have tried two MOs but none of them were patient enough to explain details. I am thinking to seek third opinion. What is your oncologist's name?

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