How many percent reduction in 10yrs recurrence shall do chemo?

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  • DorothyB
    DorothyB Member Posts: 305
    edited October 2019

    Kaaadams, maybe a second opinion also?

    The decision about what to do is so individual so I'm not about to advise others. I know some have chosen chemo with just a 3% benefit and that is fine for them. It seems like the predictor's 8% benefit is really close to your doctor's 10%. You need to decide if you want do do chemo with a 6% chance that it will stop recurrence with no side effects and a 3% chance that you will get the CIPN along with no recurrence.

    I opted out of chemo, so haven't researched side effects, %s, etc at all.

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

    kaaadams,

    While officially the Intermediate Oncotype range may be gone, from the standpoint of chemo recommendations, it is not. The most widely used and respected treatment guidelines are the NCCN guidelines, and here's what they say for your diagnosis:

    image

    https://www.nccn.org/professionals/physician_gls/default.aspx#breast This is the Physician's version, and you need to register to access.

    Note that for Oncotype scores of 26-30, the recommendation is either endocrine therapy alone or chemo + endocrine therapy. So while the Oncotype report might be more black & white about it, that's because they sell their product as being a tool to determine whether or not chemo will be beneficial and should be recommended, and it goes against their interest to suggest that there is a fuzzy middle. But when a group of breast cancer specialists take the Oncotype research results and turn them into treatment guidelines, they do separate out the Intermediate 26-30 scores with different recommendation.

    One other thing about the Oncotype report. The benefit that they suggest from chemo - in your case reducing your risk from 17% to 10%, represents a 41% risk reduction. This is based on an early study that was used to validate the Oncotype test, so this 41% is based in research, but it's important to note that most other studies have not found such as large risk reduction from chemo.

    I'm a big fan of PREDICT UK and also CancerMath but these are models whose results represent an average for all patients. Therefore it's unlikely that these models will be as accurate as an actual analysis of the genetic make-up of the tumor itself - which is what the Oncotype score represents. Often Oncotype results and PREDICT/CancerMath results are quite similar, but in a case like yours, where the PREDICT result is so different from the Oncotype result, I'd think that more weight should be put on the Oncotype result. That said, it is interesting that despite being PR- and having a high Ki-67, your Oncotype score is only 28. That's low compared to most PR- Oncotype scores I've seen on this site, and suggests that the genetic make-up of your tumor includes some favorable components that are balancing out the PR- and Ki-67.

    Here's a link to CancerMath: http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    Personally I think the Oncotype result should be one factor in the chemo decision, not the only factor. And I have big questions about how Genomic Health currently present the 26-30 Intermediate scores. An 'Endocrine Therapy Only' arm was not included in the TAILORx study for any patients with scores of 26 and higher - all these patients were given chemo. As a result, the only TAILORx data available for the 26-30 scores are recurrence risk figures that assume the patient will be having chemo & endocrine therapy. Therefore to determine the difference between chemo & endocrine therapy vs. endocrine therapy only for 26-30 Oncotype score patients, Genomic Health use the 'Tamoxifen Only' results from their original validation studies. That makes sense, except for the fact that for the lower scores, TAILORx results are so different. For scores of 25 and below, TAILORx found much lower recurrence rates than the previous study for those who had endocrine therapy only. So is it valid for Genomic Health to use this (possibly outdated) older 'Tamoxifen only' study for 26 and higher scores?

    Sorry, probably just added to your confusion.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi kaaadams,

    Thanks for the post, I will study it later when after this long weekend, I am in Canada.

    My MO talked about ten years recurring rate with me, not the survival rate, I think it is more important!

    I am reading lots of patients post, and found this age group 50-60 is gray area for under 10% chemo benefit. Actually, my husband, me and my friend are all very surprised about this fact, chemo benefit is so low, while most of the people never know.

    Talk to you later.

    Ladies, thanks for your input, I am busy on family stuff, will get back.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi DorothyB,

    My MO said my 10yrs recurring rate is 12 or 13% something, I really wonder if it is correct. He started from 25%, the figure after my radiotherapy, then he said hormone can cut half, then got 12.5%, then chemo can cut absolute 5%. If you got 26 oncotype score, and the recurrence rate is 18%, then I am not sure if I will get a pretty high score, like almost 40. I don't know if one positive node will influence to what kind of extent, cause oncotype focuses on the tumor itself.

    The other thing is, I am not sure if my PR ER scoring will be different in oncotype dx. Currently, my PR is 8 out of 8, and Her2 is 0/3, I believe will respond to hormone very well. Anyway, the big chance is that the chemo benefit is under 10%, compared to its (if ACT) side effect, and my age, I would opt not to do chemo. My MO recommended ACT, he said, if u do chemo, pick up ACT cause it works very effectively. I know one of the drugs in this protocol is the strongest chemo medicine. My MO said, it does not make sense for me to try light chemo, such as TC, due to my positive node. For this, there is almost no patient with similar situation, or very rare. But I did find a case study, which talks about that situation, but no clear result, those on gray area, really depends on personal decision. I learned some place, for doctors, if they see chemo benefit is only 4 or 5 percentages, they will still recommend cause they work towards low rate, whenever they see above 10%, they will do. It is good news, sounds all ladies back the hormone only rate is under 20%, as 10yrs recurring rate, I think it is much better than other cancers, and the newest technology at that time (if that happens unfortunately) will have a totally more favorable treatment then.

    So, I am just waiting for the oncotype dx score as a second opinion, if the chemo benefit is under 10%, I will say no. if my MO says, a light chemo makes sense (of course, lower chemo benefit), I would prefer to do, if it has 3%.

    Thanks.


  • DorothyB
    DorothyB Member Posts: 305
    edited October 2019

    Cathy, my score was 29, not 26.

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

    Cathy, you need to clarify with your MO if he is referring only to metastatic recurrence, which is what the Oncotype score projects, or whether he is including local recurrence.

    You mention a 25% risk after radiation, which suggests that your MO is referring to local recurrence, since rads does not usually impact metastatic recurrence risk. Additionally, the 50% reduction from Tamoxifen is specific to local recurrence risk; for metastatic recurrence risk, the reduction benefit from Tamoxifen is closer to 30%. So it seems that your MO might be combining local and metastatic risk, which a lot of MOs do, but in reality each is a separate risk that should be evaluated individually.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Beesie,

    Thanks for your inputs!! Yes, two recurrences are totally different.

    Do you have further ideas what those two numbers will be, suppose 25% is the combination of the two? It is so hard to see MO now, you ask questions and then get answers, but no time to think over it during the appointment, then chemo is due to start. Or you can give some links regarding this. But oncotype dx only say 9 years recurrence, did not mention whether it is local or metastatic. The other question is that, if I can do very close follow-up, can metastatic recurrence be avoided through routine?

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

    Cathy, if your MO is combining the risks to come up with the starting 25%, I have no idea how much would be distant recurrence vs. local recurrence. Local recurrence risk is influenced primarily by tumor size, tumor grade, and the size of the surgical margins.

    The Oncotype 9-year recurrence is metastatic only.

    Since most metastatic recurrences occur without there first being a local recurrence, no, there is no way to avoid a metastatic recurrence strictly through monitoring/close follow-up. If you are going to have a metastatic recurrence - and hopefully you never do - the seeds of that recurrence are already in place, with a few rogue breast cancer sitting somewhere in your body, those cells having moved beyond the breast prior to surgery (and probably well before you knew you had breast cancer). When it's just a few cells, it's microscopic and impossible to detect with any tests or screening. But when it's just a few cells, systemic treatments, such as chemo and endocrine therapy (AIs or Tamoxifen), can find those cells and kill them off, in effect stopping a metastatic recurrence before it ever happens. And that's why chemo is given to patients who show no sign of mets, and why endocrine therapy is recommended to every ER+ patient with invasive breast cancer.

  • moth
    moth Member Posts: 4,800
    edited October 2019

    Cathy67, welcome. you may want to pop in later to the Canada/BC subforum to chat specifically about BC Cancer Agency issues & protocols. (also if you're in Vancouver we're planning a meetup in Nov!)

    I qualified for gov't funded oncotype testing & was glad I did it as it changed my treatment plan from TC to AC +T as oncotype scored me as so weakly ER+ to be essentially triple negative. I know they don't fund oncotype once you have positive node because it doesn't really change their plan - they know they will recommend chemo. But it might help you determine which protocol to go for, as it did for me.

    Oh & last I heard of anyone trying to use penguin caps to preserve hair was told it was not possible in any of our treatment centers (this was spring 2018).

    & as Beesie says, there's no way to prevent a metastatic recurrence with screening; for me, the point of chemo was to reduce risk of metastatic recurrence to as low as possible. I've not regretted doing it. I believe there is evidence of some lifestyle choices helping to further decrease that risk but chemo for me was essential.




  • kaaadams
    kaaadams Member Posts: 43
    edited October 2019

    Dear ladies,

    Thanks for your responses. Racy - I did seek a second opinion after my diagnosis of IDC July this year, 2019. I haven't for adjuvant treatment though. Seeking a second opinion would cost me another delay and the Oncotype numbers make it so cut and dry, I don't think MOs will say any different, but thanks. Ideally, I would, but I feel time is of the essence for starting an AI or Taxotere. I'm a long way out now from when I first felt a lump on June 1st.

    OnTarget - It's great to hear you made it thru the chemo without signs of neuropathy! I appreciate hearing from women who made it thru. I'll definitely ice my hands and feet. You are considerably younger than me though. Wish I could hear from 60-somethings more in this forum.

    DorothyB- My risk of recurrence is 17% with AI alone, but my MO says you can never get risk below 10%; so 7% risk reduction with AI and CT. When she figured the RSPC for me and the result was 15, it was good news but not much different, so seems accurate. Unless she meant my new Oncotype # was 15 with RSPC? or did she mean 15% RS? I better shoot her a message to be sure. Do you know?

    Thanks ladies! We're all in this together and life is good! Thank you for any and all experiences you share with us all!


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

    kaaadams, the RSPC model takes as inputs your current Oncotype score, your age, your tumor size and the tumor grade, and it kicks out a new percentage metastatic risk. So the 15% is a risk percentage, not a new Oncotype number.

    As for risk never falling below 10%, sorry but that's complete garbage. Take a look at distant recurrence risk by Oncotype score from the TAILORx study results. All the risks for scores of 25 and lower fall under 10%.

    image


    The solid lines represent the average Oncotype score risk, i.e. this is the risk percentage that someone will receive on their report. The dotted lines are the ranges for all patients in the study. The red lines are for patients who had chemo + endocrine therapy while the blue lines are patients who had endocrine therapy only. (Note that this chart is from the appendix of the TAILORx report issued last year in the NEJM.)

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Beesie and Ladies here,

    Thanks for so much useful information.

    The knowledge about metastasis is no. 1 important, only here in this community, I can get this. Appointment time is so limited now, so many waiting patients, and I usually won't have meaningful questions right there if doctor tell me something new. So, I will do, clarify local recurrence and distant recurrence, and focus on distant recurrence more. I need more study, will get back later.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi moth,

    How to join this BC sub forum? Where is it? I would love to join the local community, and attend the gathering if scheduled in Vancouver area. My next MO appointment will be November 6.

    Thanks!

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi Beesie,

    I also wonder why he said 25%, I got one positive node which I think will influence my recurrence rate a lot. Anyway, what we can think over is the chemo benefit only.

  • Jenkins00
    Jenkins00 Member Posts: 144
    edited October 2019

    Cathy - The only reason my chemo was TC is I didn't have any positive lymph nodes.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi Beesie,

    Another question, distant recurrence is influenced by what? I think, one positive sentinel node will influence both local and distant recurrence?

    If I can see MO easily, like I see family doctor, then I can just go ask questions and then back study myself again. I must know all these, I cannot control whether the percentage will fall on me, but I must know what I think best for me, it is my decision, not others. If 5-7% is death rate, then it is totally different, I must clarify this.

    Thanks again, it is so helpful you gave me those points!!



  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Jenkins00,

    Yes, that is also what the MO said. But I want to know if TC works a bit or not, ACT is really too heave chemo, of course, must clarify the % at first.

    What a tough journey!

    If you look at the signatures of so many IDs in the community, you will see lots of patients with chemo still come back for another one, so who knows..

  • moth
    moth Member Posts: 4,800
    edited October 2019
  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi moth,

    I am 52 years old,sounds we are at same age, and you experienced ACT last year, how is that? Is it too too hard to spend through? It is dense dose right? How it is compared to the hardest time during pregnancy? The third month of pregnancy, the hardest time I spent through in our life, on contrast, c-section surgery and lumpectomy surgery are quite easy to go through, that is why I am scared of chemo a lot!

    My ER is 8 out of 8, from biopsy report, not sure if this will be changed on oncotype report. I think Vancouver area hospital can be trusted, only thing is that your previous ER is quite weak, then finally it turns out negative. My biopsy report is very good, everything at very early stage, but post op report totally changed, I am praying oncotype dx won't back give a dreadful change again.

  • moth
    moth Member Posts: 4,800
    edited October 2019

    cathy, how people manage on AC+T seems really hard to predict. I had pretty easy pregnancies, just nausea and fatigue the first trimester. I loved being pregnant so I can't compare. For me this was worse but that doesn't mean it will be like that for you.

    I was otherwise very healthy and fit and on paper was an excellent candidate for dose dense. I know there are lots of people who worked right through chemo with only minor adjustments to their schedules. I could not have done that. It made me very tired, esp the AC. I was also extremely neutropenic and did not respond to the colony stimulating shots that are supposed to make your bone marrow increase production. I was hospitalized twice and needed IV antibiotics because I developed fevers while having essentially 0 white blood cells.

    My MO had to do many adjustments to my dosages and schedules & the dose dense was essentially dropped & I went on a personalized schedule. Because I was so neutropenic we had to be very careful about my exposure to infectious agents. My family cleaned and disinfected everything, I avoided going anywhere that there were people but I spent a lot of time in the forests and parks with my dogs... and then I napped with the dogs :) I exercised at home, did yoga, watched netflix, puttered around the house. It seemed that about 2-3 days after the treatment I was really tired and limp and then I'd perk back up and be close to back to normal. Taxol was easier as whole & we went camping the day after I finished taxol. I recovered quickly and I went back to school while still doing daily radiation last September.

    fwiw, I would not hesitate to do chemo again if I had to. The biggest thing I had been worried about was nausea and vomiting but that was well controlled with the medications they give you.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Moth, thank you!

    I already learned, if the candidate is not health enough to do ACT, then MO will recommend TC, but my MO said, I can do. What I am worried is that, since MO only prescribes those health enough to do ACT, why still so many terrible experiences? Though they finally spent through the whole ACT, like you, how big side effect their body received from that point.

    I am not working, enjoy my leisure life, with a teen girl, moms must know what this means. Much worries, but no much physical burdens.

    Moth, do you know in Vancouver area, how to do second opinion? I already asked my family doctor, he said, Richmond only has two MOs, and they work very closely together, backup each other during absence, so does not mean sense for 2nd opinion. For Vancouver BC cancer agency, the appointment takes long long time to get. Or, do you know any place I can do second opinion once I got my oncotype dx score? I can pay, but time is so limited.

    Another question, can I just go for ACT, I know the first 4 rounds of AC is actually another chemo protocol, I will try my best to finish that, and after four rounds, based on my situation, to decide how to do the rest T. I asked for three weeks cycle, but MO said, three weeks does not work well, and I also found that information on website. I am not sure how is T, someone said they do 12 weeklyT, which means low dose. Moth, do you know that? And regarding side effect, AC is worse or T is worse?

    Happy Thanksgiving!

    I got my diagnosis after BC Day, then, hopefully after this holiday, good news from my oncotype score.

    Catherine

  • moth
    moth Member Posts: 4,800
    edited October 2019

    The thing with cancer treatment in BC is that every cancer patient is a patient of the BC Cancer Agency and every MO works under the BC Cancer Agency. They all follow the same guidelines; the breast cancer management guidelines are here btw if you haven't seen them yet http://www.bccancer.bc.ca/health-professionals/cli...

    Cases which are unusual can be brought to group committee for consultation. My case got tossed around a fair bit because there was considerable discussion whether to treat me as ER+ or triple negative. So even though I personally didn't seek a 2nd opinion, I know that several MOs considered my case and gave their opinions which ultimately went into what my MO recommended.

    Generally speaking I think the idea of second opinions in our system doesn't really make a lot of sense because 2nd, 3rd etc opinions are kind of built into the system. The entire program is very closely tied to the research arm through UBC, and they're all involved in collaborative care in developing the evidence based guidelines and supporting clinicians in case management. I think maybe for surgical options & reconstruction, there is more variation but I'm not sure if there's really that much variation for chemo protocol recommendations? (eta: but maybe ask this on the British Columbia forum because you'd get more responses from local peeps.)

    I did hear that some places in the US will do a chart review. I think maybe MD Anderson? Someone else would have to chime in with info but I remember reading you could send in your surgical, pathology, oncotype etc reports and get their recommendation.


    Oh and I found Taxol was considerably easier than AC. The dose dense taxol is every 2 weeks but I switched protocols & did the 12 doses of weekly taxol instead

    here's the dose dense (DD) AC+T protocol from the BCCA http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAJACTG_Protocol.pdf

    all the other chemo protocols are here: http://www.bccancer.bc.ca/health-professionals/clinical-resources/chemotherapy-protocols/breast


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

    Cathy, to your question, distant recurrence is influenced by many things. The determination of stage for Stages I to III used to be based exclusively on tumor size and nodal status, because those are two of the most influential factors affecting the risk of mets. However recently breast cancer staging underwent a complete overhaul, and a second method of staging has been added, which includes other factors such as tumor grade, ER status, PR status, HER2 status, and in some cases even the Oncotype score (which reflects the genetic make-up of the tumor). All of these factors influence the risk of mets.

    Of course, someone with a very unfavourable pathology might never develop mets, while someone with a very favourable pathology might - all the factors I mentioned affect the risk level, but there always remains a high degree of uncertainty.

    FYI, here is an image of a sample Oncotype report. This one is for node positive. Note that it specifies that the recurrence risk figure is "Distant Recurrence Risk at 9 Years", and the risk percentage is based on the patient taking an AI or Tamoxifen.

    image


  • Kamboka
    Kamboka Member Posts: 975
    edited October 2019

    kaaadams: I'm 60 with an oncotype score of 45. Because I was also node positive, I knew I'd have to do chemo even before the test came back. I did neoadjuvant to shrink the lump before surgery. Chemo is not fun but I have to say that AC was easier for me than the taxanes (started out with taxotere and changed to taxol). With AC, I had numerous side effects that didn't always last long and weren't too troubling except the cumulative fatigue and mouth sores. The taxanes were rougher for me. I did ice my hands and feet and still got neuropathy. I also got hand/foot syndrome and severe bone/muscle pain. My MO likes dose dense and that might be why my reactions were so extreme. I opted out of the last dose as I'd had about 85% and decided to move on to radiation.

    I hope that you are in the typical group that handles the taxanes well.


  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Thanks moth!

    I've already studied this website, but you reminded me we are Canadian, shall follow up BC process. Yes, I shall use what I learned on this website to further discuss with MO, if I use other resources that are not accepted by BC, then MO won't be willing to discuss with me. Thanks for the points!

    I found this about RT benefit for T2N1, increased 15 year overall survival by 10%, ... did not talk about absolute benefit of 10 years recurrence.

    But for T1,2N0, it said: At 10 years after diagnosis, a 20% absolute reduction in the risk of breast recurrence (from 30% to 10%) translates into a 4-5% reduction in the chance of dying from breast cancer.

    And thanks for your feedback about Taxol. I know some patients have weekly Taxol after AC.

    For the second opinion, my study is same as yours, does not make sense in Canada. Thanks for your inputs, so I won't waste further time to double confirm my understanding.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Beesie,

    Thanks. That is why I wonder my MO said my ten years recurrence rate after hormone shall be around 13%, but I have one positive node. I am expecting a high score, but still hope a low one, but won't be that low. Hard to get appointment with MO, so much to ask after this week's study.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi Kamboka,

    You did encourage me, I am 52 years old, MO said, some women in 70s also went through this chemo. Since you spent through, but skipped the last one, I guess it shall be a hard journey. My pregnancy gave me nightmare, so I never wanted second child, and my husband and I were in bad condition due to this, we've talked a few times about divorce. Till, a few years ago, it became impossible due to age, then our relationship started to get better. When I waked up from surgery, the vomiting made me to the death almost.

    I am so scared of chemo, but it is not bad idea to purchase a wig for me.These days, I noticed more and more people on streets are wearing wigs, especially men.

  • Kamboka
    Kamboka Member Posts: 975
    edited October 2019

    cathy67: I never had nausea. I think the pre-chemo drug cocktails are good and it prevented me from having that problem. Still, I would take a anti nausea tablet on the night after infusion--just to help me sleep.

    I was a young nurse in labor and delivery before epidurals. I saw all the women suffering so I decided never to get pregnant--that's why I don't have children now. :)

    I think we are lucky in this day and time that so many people where wigs or have hair extensions. Few people notice. I think we pay more attention to ourselves than others do.

  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Kamboka,

    Yeah, but the world is cheating us, delivery is easy in today's hospital. Now comes again another story, is chemo really tolerable as MO said? He said, he won't prescribe ACT to those unhealthy patients, my goodness, I am not sure if this is good for me or not. How about just treat me as those unhealthy women?

    Dear ladies, I know I am too talkative about this dreadful chemo, thanks for your patience. What you gave me is so precious at this moment!

  • Kamboka
    Kamboka Member Posts: 975
    edited October 2019

    cathy67: This is the place to be when you want to 'talk' and ask questions. Someone always seems to respond to help us make those difficult decisions.

    I suppose 'tolerable' lies in the eyes of the beholder. Everybody will react differently. Some side effects just don't effect everyone. Other people have higher thresholds for pain and discomfort. I think I amazed myself with what I could handle. I still went to work everyday during chemo. I didn't always stay the entire day but I got there and back.

    I'm sure you will discuss the benefits versus risks of chemo with your MO. I'm not sure if you said you had the oncotype done or not. My MO was recommending chemo just because I had lymph node involvement and grade 3 but when the oncotype came back at 45, it was almost a certainty that I would be doing chemo.

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