Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • marijen
    marijen Member Posts: 3,731
    edited November 2017

    Wowee that's quite a report! Solfeo. Why do they playguessing games with treatment when they can do this!


  • marijen
    marijen Member Posts: 3,731
    edited November 2017

    : ) you mean the BS? I haven’t seen him in nearly two years. I should email him and ask where my results are

  • solfeo
    solfeo Member Posts: 838
    edited November 2017

    According to my MO when I handed her the report, "It's fascinating but I don't know what to do with this information." As I mentioned, the test was my naturopath's idea. There are medical doctors who will order it though, usually integrative medicine docs. I think they will say the same thing about not really knowing and just using the results as a guideline.

    I'm not sure how much it says about treating the original tumor, because in order for these CTCs to migrate in the first place, they had to develop the more aggressive characteristics to do it. My tumor itself was non-aggressive, and that is why only tamoxifen was recommended. It didn't change my conventional treatment at all, but chemo was never recommended for me due to low Oncotype. I was glad to have the confirmation that the IVC might have a shot. As long as I stay on an antihormonal I feel pretty good about my odds.

    Just because you have these cells doesn't mean they have deposited somewhere, or that they will ever grow. But they can and they might. Knowing provided another layer of caution, especially since I wasn't getting chemo.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2017

    sofeo - that is fascinating! Thanks for posting!

  • HoneyBeaw
    HoneyBeaw Member Posts: 212
    edited November 2017

    Sofeo

    I looked at the test result but have no idea what they are saying So what does it tell you about your situation.

    Are you glad you had the test or did it just cause more fear and uncertainty for you .

    kind regards

  • NicolaSue
    NicolaSue Member Posts: 111
    edited November 2017

    I get the stats as I have advanced research training. Key for me is that there are some significant limitations of the study. Firstly not all the women completed the hormone therapy and secondly the diagnosis and initial treatment was now some considerable time ago so if the study were done now and analysed in 20 years the results might be very different. I've read some of the on-line comments in other fora from the experts and I don't think people are overly impressed by the study.

  • solfeo
    solfeo Member Posts: 838
    edited November 2017
    HoneyBeaw Tn - I pretty much covered all of it in my posts over the last few days. Take a read and let me know if you have any specific questions, but remember that all I have is opinions.

    NicolaSue - I don't have any specialized training except for a long-forgotten statistics class over 30 years ago, and a lot of brain-wracking reading since the DX. In my cynical way of thinking what you said sums up most of the research we get. By the time it reaches the clinical practice stage the "new" information is already outdated. The positive thinker in me says that as members of any statistical group we can often assume better outcomes for ourselves than any "new" study suggests. Still doesn't mean so much for an individual, but the numbers show the trends, and they are headed in a hopeful direction.

    Of course this oversimplifies the situation but I hope it helps the people who are having a hard time wrapping their heads around the numbers.
  • Mommato3
    Mommato3 Member Posts: 633
    edited November 2017

    Did this study say approximately how many women didn't finish treatment? That is my concern with looking at the stats. What if only 50% continued taking the AI for the full five years?

  • marijen
    marijen Member Posts: 3,731
    edited November 2017

    Barreled Owl answered that question, go back and read allher posts.

  • NicolaSue
    NicolaSue Member Posts: 111
    edited November 2017

    My memory is that (I don't have the paper in front of me to be sure) up to 30% of women may not have completed the hormone therapy. I think the bottom line is that they don't know for sure how many didn't complete. I've also read elsewhere that numbers that SAY they complete will always differ from those that do for the obvious reason that it takes a brave soul to say they are not complying and many will not comply but say they are.

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    I don't have a problem at all with telling my doctor what I will or won't do for treatment. The first time I told my mo I will not do chemo, do you still want me as a patient? He said yes. I said no to AI treatment after 4 years of it. As far as I know I am not included in any statistics.

    ALL of the doctors I have asked, "How did I get this cancer, they all replied we don't know". I don't blame myself for getting the disease.

  • Mommato3
    Mommato3 Member Posts: 633
    edited November 2017

    Marijen, Thanks for your help? Just so you know, I've read every post in this thread. I even went back and reread all of BarredOwl's posts but didn't see it.

    NicolaSue, I appreciate you taking the time to respond. The number of women that actually completed their treatment is important to me. The recurrence rates in years 5-20 could be greatly influenced by the number that finished or didn't finish treatment.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2018

    Pan Meta-analysis (2017), http://www.nejm.org/doi/full/10.1056/NEJMoa1701830

    For those who purchase a copy of the full paper, be sure to also download a copy of the Supplementary Appendix, which contains a large amount of data and information regarding the underlying trials.


    Types of Endocrine Therapy:

    There were a variety of endocrine therapy regimens included in this meta-analysis. There were 62,923 patients who were disease-free after 5 years and who were therefore included in the year 5-20 analyses. Per the Supplementary Appendix, among these 62,923 patients, the regimens were:

    (1) Tamoxifen only (66.2%);

    (2) an Aromatase Inhibitor ("AI"; 10.9%);

    (3) Tamoxifen and AI (a "switch" regimen; 22.5%);

    (4) Toremifine only (0.4%); or

    (5) Ovarian abalation or suppression (pre-menopausal; 2.2%).


    Adherence to Endocrine Therapy:

    Although trial participants were assigned to five years of endocrine therapy, some may have discontinued treatment early. Pan (2017) notes, "All the patients were scheduled to receive endocrine therapy for 5 years then stop, regardless of actual adherence."

    Regarding levels of adherence, there seems to be little detail. As quoted earlier in this thread: "First, the recurrence rates reported here are in women who were scheduled to receive 5 years of endocrine therapy, not in those who completed treatment. Only a few of the trials in our study provided detailed data with respect to adherence, but a substantial minority of women in trials of 5-year endocrine therapy did not complete their treatment.[2]"

    Reference 2 is the 2011 EBCTCG meta-analysis of about five years of Tamoxifen, which included some information regarding compliance in a subset of trials included in the 2011 analysis (citations omitted): "Six major trials described compliance with the tamoxifen allocation (75% in NSABP completed ≥3 years; and 89% in GROCTA, 78% in IBCSG, 82% in ICCG, 69% in NCIC, and 86% in SWOG7 [weighted mean 82%] completed ≥2 years)."


    Chemotherapy:

    Some of the patients included in the Pan (2017) meta-analysis also received chemotherapy. However, the design of this study did not permit reliable assessment of the relevance of chemotherapy to prognosis after year 5.


    Specific Recurrence Rates Reported - Caveats and Limitations:

    The discussion section addresses various caveats and limitations of this work, which could have an impact on the accuracy of the specific rates measured. For example, had all patients received a full five years of prescribed therapy (which they didn't), it may have further reduced rates measured in certain time-frames. On the other hand, they had reason to suspect that there were some "unreported breast-cancer events" in this study.

    The "long follow-up means that most of the patients received the breast-cancer diagnosis well before 2000. Since then, the prognosis for women in particular TN categories has somewhat improved owing to earlier diagnosis, more accurate tumor staging, and better surgical, radiation, and systemic therapies." This means that patients diagnosed today and treated in accordance with current standards of care may fare somewhat better than the relevant averages reported for this study population.

    BarredOwl

  • marijen
    marijen Member Posts: 3,731
    edited November 2017

    Mammoto3, it was the last post at page 59. But BarredOwl just included the information again, above

  • LoveLau
    LoveLau Member Posts: 105
    edited November 2017

    i had catscan and bone scan and my oncologist said the were "clear no.cancer" that sounds like cancer free to me,if i choose to believe it. I hope i can.

    Anotthet thing about cancer i met a lady who saud she had 6 yrars stage 4 breast cancer, then i found out she didnt have it in her breast but had it in her sternum. So no breast surgery, no chemo, no radiation. She takes some pills but not ai.

    Also i met a guy who got a lump on his head and that turned out to be lung cancer.

    Bless all of you and me too.

  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    Hi everyone...just want to add that my doc at a major NYC university hospital told me that 50 percent do not complete the 5 recommended years of anti hormone therapy due to side effects. He said that includes both Tamoxifen and aromatase inhibitors. This is the reason I have always said that we need better treatment options!

  • marijen
    marijen Member Posts: 3,731
    edited December 2017
  • marijen
    marijen Member Posts: 3,731
    edited December 2017

    Metastasis and Angiogenesis

    Angiogeisis Video

    https://m.youtube.com/watch?v=eSwG5O_kiOQ

  • Molly50
    Molly50 Member Posts: 3,773
    edited December 2017

    From SABC 2017:

    December 6, 2017—San Antonio, Texas— Patients with metastatic breast cancer have been shown to exhibit frequent mutations in high- and moderate-risk breast cancer genes.

    This outcome of a registry review of prospectively collected data was reported at the 2017 San Antonio Breast Cancer Symposium, from December 5 – 9.

    Peter A. Fasching, MD, of Erlangen University Hospital, Erlangen-Nuremberg, Germany, explained that new treatment strategies for metastatic breast cancer are mainly driven by therapies against specific targets.

    BRCA mutations are one of the few established actionable targets, with PARP inhibitors and platinum-based therapies showing high efficacy in metastatic breast cancer. Hereditary cancer testing panels are now used broadly to identify individuals with BRCA1/2 mutations who may benefit from these therapies.

    Many of these panels also contain other predisposition genes involved in BRCA-related DNA repair pathways, though the clinical relevance of mutations in these genes remains unclear.

    Dr. Fasching and colleagues set out to describe the mutation rates of BRCA1/2 and panel-based predisposition genes, as well as associated clinical characteristics of individuals with these mutations.

    The PRAEGNANT metastatic breast cancer registry is a prospective registry for patients with metastatic breast cancer that focuses on molecular biomarkers. Patients who receive any therapeutic regimen are eligible for the registry.

    Germline DNA was collected at study entry and genotyped for 37 genes predisposing to cancer, including BRCA1 and BRCA2. The frequency of mutations in each gene was determined, and associations between mutations and patient and tumor characteristics, metastatic pattern, and overall survival assessed.

    Mutations in established high- (odds ratio >5.0) and moderate-risk (odds ratio >2.0) breast cancer genes (BRCA1/2, PALB2, CHEK2, ATM, RAD51D, BARD1, and MSH6) were seen in 123 of 1462 tested patients with metastatic breast cancer (8.4%). BRCA1 and BRCA2 mutations were seen in 1.4% and 2.9% of patients, respectively.

    The most frequently mutated non-BRCA panel genes were CHEK2, PALB2, and ATM, found in 2.8%, 0.8%, and 0.6% of patients, respectively. Mutation frequency varied with regard to patients who developed brain metastases, visceral metastases or bone-only metastases.

    BRCA1 or BRCA2 mutations were seen frequently in patients with brain (5.3%) or visceral metastases (5.2%), but were present in only 2.5% patients with bone only metastases and 1.5% of patients with lesions in other locations. Panel genes were equally distributed among all metastatic patients.

    PALB2 mutations (n=11) were seen only in patients with brain (1.9%) and visceral metastases (0.9%), but not in patients with bone metastases or other locations. A total of 36.4% (n=4) of all patients with PALB2 mutations developed a brain metastasis.

    When adjusted for other prognostic factors in metastatic breast cancer, a mutation (all genes) was associated with an unfavorable prognosis (hazard ratio 1.50, 95% confidence interval 1.04 to 2.30, P = .03).

    The frequency of mutations was similar according to lines of therapy. All other associations with molecular subtypes and risk factors were similar to those of primary breast cancer cases.

    Dr. Fasching concluded that mutations in high- and moderate-risk breast cancer genes were observed at a frequent rate in patients with metastatic breast cancer.

    The frequency was substantially higher than the 4% to 5% frequency of mutations observed among unselected patients with primary breast cancer, but consistent with recent results of studies of patients with metastatic prostate cancer.

    Patients with brain and visceral metastases exhibited the highest rates of BRCA mutations. The results suggested that PALB2 mutations may be more frequent in patients with brain metastases.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2017

    Molly, I felt sick reading this earlier today.

  • Molly50
    Molly50 Member Posts: 3,773
    edited December 2017

    Hopeful, me too but then it justified my decision to fire my MO and get a new one.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited December 2017

    Makes me sick to think of since I have a palb2 mutation

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2017

    Lovinggrouches - Do you actually have a deleterious mutation or is it strictly a VUS? If it makes you feel any better, most VUS are eventually reclassified as benign.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited December 2017

    hopeful82014...how do you find out if it had been reclassified

  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017

    Waiting for a reclassification of a VUS is generally a very long wait. There are thousands of them and building a meaningful database of these genetic variations appears not to be a priority because evidence of their known effects is so slim.


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2017

    ThinkingPositive - That's a good question! Ideally, your genetic counselor should update you (and/or the ordering physician) of any changes in the status of a VUS. However, that doesn't always happen, for a variety of reasons.

    You could designate someone else that you know you will see on an on-going basis, such as your MO or PCP to be notified in the event of changes.

    The easiest way is to call the company that handled your genetic testing. They have staff who work specifically with patients and are very happy to discuss such issues.

    As traveltext stated, it can be a long, long time before a VUS is reclassified so probably checking no more often than once every year or two is appropriate.

    If you have a VUS you can check into participation in studies such as the PROMPT study which is collecting information to better understand the results of both VUS and deleterious mutations:

    http://promptstudy.info/

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited December 2017

    Molly, thank your for the post from San Antonio about the PRAEGNANT study. Can you tell me how to directly access what you posted, and the name of the paper? Or was it just a talk? The MSH6 mutation has not been considered a breast cancer gene in the past, though I saw one small study that suggested it could be. This is important for me to understand. It may help answer the question, "What the hell happened?"

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited December 2017

    Mine is VUS. I am participating in the prompt study

  • JuniperCat
    JuniperCat Member Posts: 658
    edited December 2017

    Interesting, Re: PROMT study. I’d never heard of it. I contacted them with the results of my BRCA test from a few years ago and they said I am eligible and should participate. What exactly does participating in this entail? Many thanks!!


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2017

    JuniperCat, here's a link to more info:

    http://promptstudy.info/

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