Is it realistic to think you'll never get a recurrence?

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  • Theresanne
    Theresanne Member Posts: 90
    edited December 2014
    I don't know what happened...most of ny post deleted? Anyway...3years out..and terrified of every little ache, pain pimple. I'm a mess...
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    I hear "there are so many new treatments" all the time. On the other side, I hear "there's barely been any progress made in the past 30 years."

    So what treatments have there been?

    Hormonals: Tamoxifen came along what, 20 years ago? And AIs came along later. How long ago? 10 years? When did premenopausal women get the option of ovarian suppression?

    Chemo: Taxane agents are 10-20 years old, right? When did the platinum agents start being used?

    Targeted therapy: Probably the biggest development. Herceptin improved survival rates by 52 percent. Then there's Tykerb, Perjeta, Kadcyla. And now there's even Her2 vaccines in trials.

    Surgery and radiation: Become less invasive, better targerted. But have those improvements improved survival rates?

    So looking at the list I just made, those are good gains, but fairly modest ones. (With the exception of Her2 treatments. Thank you Dr. Slamon.)


  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    Komen appears to have a more in-depth discussion of molecular subtype:

    http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html

  • Momine
    Momine Member Posts: 7,859
    edited December 2014

    SpecialK, thanks very much, that is a clear summary. According to that I am also luminal A. Good to know.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2014

    You should PM the mods & have them update their information! According to Komen, I am a 'B'. Interesting.

    I am editing this post because I just looked on the Mayo Clinic website & their definition is the same as BCO's....which puts me back in the 'A' catergory. ??????

    This is what Mayo says:

    Group 1 (luminal A). This group includes tumors that are ER positive and PR positive, but negative for HER-2. Luminal A breast cancers are likely to benefit from hormone therapy and may also benefit from chemotherapy.

    Group 2 (luminal B). This type includes tumors that are ER positive, PR negative and HER-2 positive. Luminal B breast cancers are likely to benefit from chemotherapy and may benefit from hormone therapy and treatment targeted to HER-2. Group 3 (HER-2 positive). This type includes tumors that are ER negative and PR negative, but HER-2 positive. HER-2 breast cancers are likely to benefit from chemotherapy and treatment targeted to HER-2. Group 4 (basal-like). This type, which is also called triple-negative breast cancer, includes tumors that are ER negative, PR negative and HER-2 negative. Basal-like breast cancers are likely to benefit from chemotherapy.


     

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    ruthbru - was your Ki67 high? 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2014

    I'd have to go back & look it up, but I believe so.

    What I am not getting is it looks like  both BCO & Mayo say Luminal B has to be HER2 positive.

  • Momine
    Momine Member Posts: 7,859
    edited December 2014

    Badat, there was some study recently which showed that mortality rates have actually fallen and that people are living longer without recurrence. There hasn't been any one revolutionary new treatment except for Herceptin, which has had a major impact as you note, but doctors have gotten better at using the tools they already have.

    We also have evidence now that it is beneficial to continue endocrine treatment past the initial 5 years, for example. This is one adjustment in treatment that will save or extend many lives.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2014
    The Komen info has always thrown me, due to its emphasis on the Ki-67 As a major differentiating factor between Luminal A and B. I don't know that I've seen that anywhere else. According to their chart, I'm B, which doesn't surprise me but does give me a bit of a pause.
  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    ruthbru - if your Ki67 was high you could still be B even if not Her2+, according to Komen's chart.  I think the BCO and Mayo info is simplified, possibly because of the uncertainty about the importance of Ki info.  In some quick further reading of studies it seems that the proliferation (high Ki) is what would push a seeming Luminal A over into the B category even if Her2-.

  • jojo2373
    jojo2373 Member Posts: 662
    edited December 2014

    The early models stated Luminal B had to be HER2 positive. Since that time, they expanded the 4 types to 5 molecular types. Luminal B with HER2 positive and Luminal B HER2 negative but high grade/Ki67.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2014

    Well, I fit some boxes, but not others, in both categories; so I guess I'm an: A-/B+

    BCO & Mayo should both update their information though, maybe with a note stating that the importance of the Ki has not yet been established.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2014

    I like your sub-categories, Ruth. :) Also agree that sites such as BCO and Mayo (among others should update their info. I'd go farther and state that if you're going to offer such a website there is an obligation to work at keeping it up to date.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited December 2014

    LOL, Ruth!

    From my metastatic BC perspective, luminal A or B doesn't mean much. Recurrence is not the same as metastasis. Having said that I am NED and have not recurred in 7 years. A British group once came out with 10 different subcategories. I wouldn't be surprised if (and should I hope?) I'm Cluster 4 in this scheme given my history of autoimmune disease.

    http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/

    Intriguingly, one of the clusters (Cluster 4, below) contained both ER+ and a sub-set of triple-negative tumours with – paradoxically – a good prognosis. But these tumours didn’t show any large-scale gene defects. Instead, the team spotted subtle deletions, not in cancer genes, but the genes of the immune system.

    Checking the original biopsy revealed what was going on. Looked at down the microscope, these tumours were packed full of white blood cells. It seems that, for some women with a supposedly poor outlook, their own immune system somehow comes to their rescue, holding the tumour at bay. This had been observed before, but never in such detail. And certainly not as a distinct ‘type’ of breast cancer.

    And then there are those who say the microenvironment in the breast, bone, liver, etc., not just the tumor tissue, is important to consider.

  • starwoman
    starwoman Member Posts: 73
    edited December 2014

    Thanks for that link and the reminder about the METABRIC study Heidihill. I've never managed to get a clear picture of Luminal B.

    My pathology report gave Ki-67 as 30 and diagnosed me as Luminal B. ER was described as 'positive' and PR as 'strongly positive' but no percentages given.

    The surgeon and the second-opinion oncologist were somewhat dismissive of Ki-67, stating it was unreliable. My Oncoptype came in at 18 and neither oncologist recommended chemotherapy (I have had other health issues which I think also factored into this recommendation). When I queried Luminal B with the second-opinion oncologist, who is also involved in breast cancer research, she stated that molecular analysis would need to be done to determine whether a tumour was Luminal B (and I assume this is not routinely done for the pathology report?).

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2014

    bump for weesa

  • Annette_U
    Annette_U Member Posts: 111
    edited January 2015

    Well…as I thought - I am a Luminal B because my KI-67 was 63. Strange that I also had a grade 1 cancer. I think someone screwed up either on grade or KI score…just seems odd. But …. I'm alive now!!!!!!!! and plan to be around for 15 years at least.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    Traveltext is correct about the article. Luminal A's are ER/PR + and Her2 neg. Luminal B's are ER/PR + and Her2 Pos. There are more hormonal therapies that work for A's, so that is why they say A's have better prognosis.

  • maryland
    maryland Member Posts: 1,298
    edited July 2015

    I am a hairdresser in a retirement home. My clients are all between 80 and 105. Many of my ladies had BC 40-50 years ago and the only tx was a radical mastectomy. They talk about it as tho it was a bump in the road of life. My grandma had BC in her 50's, had a mastectomy, lived till 80 and died from other causes. Recurrence is not inevitable, seems like a crap shoot, might as well live for today and make the best of every moment.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited July 2015

    image

    This is my 92-year-old mom on a scooter with my DH. She had a double mastectomy in the 1980's, and as you can tell, she's still going strong.

  • Bliss58
    Bliss58 Member Posts: 1,154
    edited July 2015

    That's a great photo! Your mom's rockin' 92!

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited July 2015

    I thought that was a wonderful photo as well. Way to go mom. My mom is 92 also, but you'd never see her on a bike lol

    Nancy

  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2015

    My grandmother is 92 and doing great but I cannot see her on a scooter! Yay for your mom!

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