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How can someone jump from 1A to 4 quickly?

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  • MsPharoah
    MsPharoah Member Posts: 224

    SheThumbsUpThumbsUp

  • barbe1958
    barbe1958 Member Posts: 7,605

    Taking medication to not recur doesn't mean you are cured. At that moment you are NED. Think of a diabetic that thinks they are cured because their blood readings are normal. If they go off their medication then the readings go back up. There is a difference between cured and stable.

    Also nice to see another post by someone who says they don't really stage anymore. The point is to make the treatment personal for the patient and not just a broad brush painted over anyone with breast cancer. There are many forms of breast cancer with variations of ER/PR and HER2 markers. The individual stats should be considered for the treatment plan. That is what we should all be working towards. My rare cancer is different from lobular or IBC. Why would I get the same treatment as another stage one gal?

    The poster above doing all the research is doing her due diligence and I respect that. We have to be our own health advocates because no one cares more than us!

  • summerangel
    summerangel Member Posts: 182

    It seems pretty clear to me that individual situations ARE being considered for the treatment plan. For example, MsPharoah had a grade 1, 1cm, node-negative BC but was given chemo (I assume this was at least partly due to the Oncotype score). I had synchronous bilateral invasive BC, grade 1, node-negative, 2.2cm and 1.1cm multifocal tumors and was not given chemo (due to low Oncotype, negative nodes, and grade).

    As for whether to trust that early stage, especially stage 1, will generally not return, it's definitely better to look at the larger picture rather than these boards. According to the ACS, approximately 231,840 cases of invasive BC were diagnosed last year in the US and there are approximately 3 million women with a prior BC diagnosis currently living in the US. Compare that to the number of women posting here. It just makes sense that the statistics are accurate.

  • erento
    erento Member Posts: 187

    I agree that the 30% number sounds suspect. If, on average, 30% of early stage breast cancer patients progress - and early stage being 1A to 3A (btw where does 3B and 3C fall?) - AND stage 1 has excellent survivor rate AND constitutes majority of BC diagnoses, the only way to reach 30% is that the vast majority of stages 2B and 3A progress which doesn't sound right, anecdotally.

  • aven
    aven Member Posts: 4

    Knock, knock...

    I've read just enough during my preparation for my biopsy to become interested in precisely this question. The biopsy confirmed a benign breast condition. Do you mind if I post here sometimes?

  • cb123
    cb123 Member Posts: 80

    Hi Barbe,

    I love your comment about the individual stats. Had the first MO treated me this way, he might still be around.

    I jumped relatively quickly from stage I to IIIC. It was due to trace cancer in the nodes. Within about 18 months it had grown to the sizes mentioned in my signature.

    It happens. I think that radiation to those nodes would have bought time and the recurrence may not have happened so soon.

    cb

  • nancy2581
    nancy2581 Member Posts: 407

    This board needs a like button. Thank you MsPharoah. I'm not ILC, but I also see that broad generalization that chemo doesn't work for ILC. No oncologist (at least mine) is going to give you chemo unless they believe there are benefits to it. My onc is ultra conservative, but she's aggressive in her treatment plans. I'm ok with that.

    Barbe - I agree with you that the treatment plan should be catered to the individual. I believe mine was.

    Nancy

  • KathyL624
    KathyL624 Member Posts: 47

    cb123--did you only get breast radiation after your lumpectomy? Hormanal treatment after?

  • She
    She Member Posts: 131

    I believe the 30% progression rate with another 6-7% being diagnosed de novo are relatively accurate numbers based on 20 years of personal life experience with this disease. That researches themselves quote a 40% progression rate pretty much confirms it. Like Barb said, survival is a crap shoot.

    We can debate statistics until the cows come home and what difference will it make to survival. None. What will make a difference is advocacy from every stage. A united front.

    I believe in part the current issues are carried forward from the inception of the pink ribbon culture, and a sincere desire not to terrify already frightened and overwhelmed newbies with discussions on mortality. It speaks to our sensitive and protective natures, but in retrospect it was counterproductive to our cause. Stop BC deaths. I'm now of the opinion it's far better to face the harsh realities of the disease head on and work through the fear to be able to push forward on our demands for more research and continued efforts in developing more effective individualized treatment plans. That's how we will win.



  • muska
    muska Member Posts: 224

    Eren, unfortunately the stats stubbornly indicate that progression does happen at stage 1 and progression at stages 2 & 3 is more frequent. Survival stats have changed a bit recently but not dramatically. Below are two snapshots of BC survival stats by stage.

    image

    Speaking of how quickly transition from 1A to 4 can happen, it took me less than a day to transition from clinical 1A to 3A and my oncologist monitored me for two years to make sure I haven't transitioned further. I think it is important to understand that staging is not very accurate.

  • MsPharoah
    MsPharoah Member Posts: 224

    Nancy2581, I should have mentioned that my oncologist was not the least bit wishy-washy in her chemo recommendation...she knew it was my decision, but never once said, "We can go either way, your decision". Had she done so, I would have found another doctor. That's just me.....once the info was there, the recommendation and decision made, it was game on. And I knew my oncologist was in it with me.

    What I don't appreciate is the linear treatment we often receive. I was diagnosed via biopsy on 12/4 and didn't have surgery until 2/18 (due to holidays and genetic and other tests needed to make the surgical decision) and didn't get the Oncotype back until the beginning of April (because the surgical sample sent by the lab didn't have cancer in it/had to be resent). I would like to see oncologists start anti-hormonal therapy as soon as the diagnosis is made and only stop that therapy when chemo starts. I see no reason why I could not have started my AI targeted therapy in early December through March, stopped before chemo receiving the immediate benefit.....not to mention the psychological benefit of knowing I was doing something to kill my cancer.

    Hugs, MsP





  • cb123
    cb123 Member Posts: 80

    I had no treatment whatsoever after the lumpectomy.

    18 months later I had a tumor recurrence in the lumpectomy spot, 2 tumors in the nodes, a mastectomy and anti-hormones.

    No radiation ever, but I should have had some after the lumpectomy.

    cb

  • lisey
    lisey Member Posts: 300

    i want to throw something of a curveball into those statistics. I've been looking at the BluePrint, DNA test, brought you by the same people who do the mammaprint. They say Luminal B, is nearly as deadly longterm as Basal (TN).. In fact around the 5 year mark Luminal B passes HER2+ as more likely to reoccur and drops to numbers of the TN ladies. Now Luminal B ER+ tumors are more rare than Luminal A, but perhaps the vast majority of stage 1A that is experiencing reoccurance comes from those B peeps? I think I'm going to pay for the blueprint along with the mammaprint, so I will know whether I'm an A or B. I have low PR+ 5%, and a middle ki67 of 30% (but it was the tumor healing from a biopsy, so could be inflated)... I just want to know.

    image

  • lisey
    lisey Member Posts: 300

    Here is the study that says if we understand our subtyping we can figure out more easily who should get chemo or not.

    http://www.agendia.com/response-and-long-term-outcomes-after-neo-adjuvant-chemotherapy-pooled-dataset-of-patients-stratified-by-molecular-subtyping-using-mammaprint-and-blueprint/

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Okay, so we all understand that stage is used for both prognosis and treatment decisions. I hope that this is cleared up once and for all.

    VR, I've been digging around to see if I could find if there are any cancers that are not staged. It appears that there are select number of children's cancers that are not staged, as well as a few very rare and unusual adult cancers. The only more common (relatively speaking) cancers that are not staged are Kaposi Sarcoma (AIDS) and Brain/Spinal cancers. Here's the reason why for Brain/Spinal cancers:

    The stage of a cancer is a measure of how far it has spread. A staging system is a standard way for the cancer care team to describe the extent of this spread. For most types of cancer, the stage is one of the most important factors in selecting treatment options and in determining the outlook (prognosis).

    But tumors of the brain and spinal cord differ in some important ways from cancers in other parts of the body. One of the main reasons other cancers are dangerous is that they can spread throughout the body. Tumors starting in the brain or spinal cord can spread to other parts of the central nervous system, but they almost never spread to other organs. These tumors are dangerous because they can interfere with essential functions of the brain.

    Because tumors in the brain or spinal cord almost never spread to other parts of the body, there is no formal staging system for them.

    http://www.cancer.org/cancer/braincnstumorsinadults/detailedguide/brain-and-spinal-cord-tumors-in-adults-staging

    Nancy and MsPharoah, the comments on this board about about grade 1 and chemo have always confused me too, because I've never seen grade explicitly factored into the NCCN Treatment Guidelines. The characteristics the NCCN use to determine treatment options are tumor size, nodal involvement, ER/PR status and HER2 status. Recently the Oncotype score has been added in for some situations. But grade has never made the list; if mentioned at all, grade has been presented as a 'soft' characteristic that might play into a treatment decision only when the guidelines are not definitive, for example when they say that "chemo should be considered" (vs. specifying that chemo is a necessary part of the treatment plan). In your case, Nancy, with a 2.8cm tumor and a positive node, the NCCN Treatment Guidelines clearly say that chemo is indicated. NCCN Guidelines for Patients Stage I and II Breast cancer See page 44.

    She, I agree completely that more funding should be directed to metastatic breast cancer. Too many women develop mets, and we absolutely need better treatments for everyone who reaches that stage. That said, I have a different take-away from the statement "breast cancer is estimated to recur or metastasize in (only) approximately 40% of patients" and from the fact that approx. of 30% of earlier stage women (Stage IA to Stage IIIA) go on to develop mets. What these stats tell me is that we are not doing a very good job yet at stopping early stage women from progressing. Rather than just figuring out a better way to treat patients after they develop mets, we need to stop these early stage women (and men) from ever becoming metastatic. So this means that research and development for more effective early stage treatments remains critically important.

    Lastly, as for that "30% of early stagers go on to develop mets" statement, every time I've dug into this using SEER data and other data I can find about overall breast cancer mortality, survival rates by stage and stage at time of diagnosis, I come up with a figure that is in fact close to the 30%. Currently, the long-term survival rate for anyone diagnosed with breast cancer is in the range of 60%; conversely, this means that approx. 40% of women will not survive their diagnosis (although some will live 20 or 25 years). So here's my simple math on this:

    - % of women diagnosed at Stage IV: 6%.............................. % who succumb to breast cancer: 6%

    - % of women diagnosed at Stage IIIB and IIIC: 9%-10%....... % who succumb to breast cancer: 6% - 8%

    - % of women diagnosed 'Early Stage': 84%-85%................. % who succumb to breast cancer: 26% - 28% (or about 30% of the 84%-85%)

    Total: Diagnosed. . . . . . . . . . . . . . . . . . 100%...................... % who succumb to breast cancer: 40%

    Important note: Since we're talking long term survival, obviously these are stats based on women who were diagnosed a long time ago – in the '80s.There's no question that for women diagnosed more recently, the long-term survival rates will be better.

    So, while my numbers might be off by a percent or two, it does suggest that the "30%" figure is in the ballpark.


  • nancy2581
    nancy2581 Member Posts: 407

    My point exactly Beesie thank you. There are other factors considered when determining if one should get chemo if they have a grade 1 cancer. I just get annoyed when a broad statement such as chemo doesn't work for grade 1 is mentioned.

    MsP - I agree with you that if tamoxifen or an AL can be started at diagnosis why not if it's going to take a while to get all the information or if surgery is going to take a while. Some oncs will do it. I was fortunate enough to have my surgery, chemo and rads quickly (well at the time it wasn't quick to me lol). My onc even started me on tamoxifen when I started rads while most oncs seem to wait until after rads.

    Nancy

    Ladies this thread has been very informative and interesting to follow. Thank you all

  • hopeful82014
    hopeful82014 Member Posts: 887

    Nancy, I agree with you (and others) regarding some of those overly broad statements that seem to be repeated until they become articles of belief. I've also seen similar statements that conflate the SEs of tamoxifen with those of A/Is, and vice-versa. Although I don't expect everyone on this board to get it right 100% of the time, I do feel strongly that we owe it to ourselves, and others, to be as accurate as possible in our statements. Our words can leave an indelible impression that we are, at least partially, responsible for.

    Kayb, that's an excellent point about Luminal B stats and HER2.

  • KathyL624
    KathyL624 Member Posts: 47

    Muska, do you know when that chart you put up was published? Those numbers seem pretty old. I know everything I can find has 5 year survival much higher than that.

  • She
    She Member Posts: 131

    Beesie, I agree early stages aren't treated effectively enough when we look at the recurrence rate. I think one of the complicating issues may be the cases where time gaps between occurrences are 5-10-15-20+ years. I certainly wouldn't be adverse to additional research to stamp out progression, but as of right now that 40% group is on an express train to the grave so I'd have to say I feel metastatic research is far more important as an immediate, critical issue. One of the very debilitating aspects of having metastatic disease is the perception that our lives in the here and now are less important than the lives research will save someday in the future. I honestly don't know how to change that perception (which in actuality is a reality for many).

    PS Re Luminal B - Earlier I mentioned the recurrence I had a year ago. The tumour was encapsulated in fat (diep) with zero breast tissue. My hormonal status also flipped to PR-. ER+/PR- HER- is considered Luminal B. Recurrences are expected, in a shorter time span. (Additionally, a BC tumour with a complete absence of breast tissue is very rare. I thought I'd seen it all after being tripleneg, then ER/PR+. Silly me lol.

  • nancy2581
    nancy2581 Member Posts: 407

    Exactly Hopeful. I remember when I was going through chemo I would read these statements about chemo not working for grade 1 cancers. It scared the crap out of me as a newbie because I believed it. The truth is nobody knows if chemo is going to work for any grade of cancer.

    Nancy

  • 123JustMe
    123JustMe Member Posts: 169

    Just published in Practice Update:

    http://www.practiceupdate.com/journalscan/29138/2/...

    I wonder if some of those who go from stage 1 to stage IV may have been staged incorrectly in the beginning

  • barbe1958
    barbe1958 Member Posts: 7,605

    In the almost 8 years since my first diagnosis I've seen so many new tests and treatments for breast cancer. Oncotype testing became a reality, but when people didn't realize that the number was based on the fact that you took Tamoxifen (or an AI) it gave a false sense of security as some women would stop the hormonal treatment because they couldn't tolerate the side effects. Also, as there was a test created to see if someone was even metabolizizng Tamoxifen it enabled some women to go off it and change treatment. It was discovered that chemo wasn't helping women with slow growing cancer as chemo only kills fast growing cells. That was huge, as people could safely decline the dangers of chemo as it wasn't going to help them.

    Herceptin was another new parameter that began to help HER2- patients. This Luminol is fairly new as well. So really, in a very short time a lot has been discovered - confirmed - proven - accepted.

    I will say, that I would be honoured to be a guinea pig for treatment/meds to be able to help the stage IV ladies who follow me.

  • lisey
    lisey Member Posts: 300

    123JustMe... can't read the article as it's a login page. Can you post a link to a pdf?


  • 123JustMe
    123JustMe Member Posts: 169

    INTRODUCTION

    The objective of our study was to assess recurrence after negative sentinel node biopsy (NSNB) and to determine risk factors related to local and distant recurrence in this group of patients.

    METHODS

    This is a prospective observational study conducted from 2006 to 2011. It included 607 patients with breast cancer in early stages and NSNB, with a 5-year follow up.

    RESULTS

    Disease-free survival rate was 98.5% and 96.5% at 2 and 5 years respectively. Multivariate analysis identified disease recurrence prognosis factors: tumour necrosis (HR 4.89, 95%CI 1.61-14.89, p=0.005), lymphatic vascular invasion (HR 3.46, 95%CI 1.14-10.55, p=0.029), T2 tumour size (HR 4.35, 95%CI 1.40-13.52, p=0.011) and moderate/severe lymphoplasmacytic stromal infiltration (HR 3.06, 95%CI 1.18-7.96, p=0.022).

    CONCLUSION

    Recurrence results in patients with NSNB are satisfactorily low. Nevertheless, prognosis factors related to a higher recurrence rate could help to identify high-risk patients and influence on systemic adjuvant therapeutic management.

  • lisey
    lisey Member Posts: 300

    Interesting... Thank you 123. I didn't get anything on Tumor necrosis on my path report, do you know what that one means? The others seem fairly cut and dry..

  • barbe1958
    barbe1958 Member Posts: 7,605

    5 years is a very very short study period. My slow growing ER+ cancer recurred at year 7. That 5 year gap doesn't mean remission or cured in the breast cancer world.

  • Mariangel43
    Mariangel43 Member Posts: 45

    Hi, gals, I have been reading your comments. My experience with grading and staging is that my MO took them both into consideration. My oncotype score is 26, (yes intermediate zone). The MO I was sent for a second opinion told me exactly what my primary MO told me. In my case SNB showed one of 3 lymph nodes as positive. Besides, with hormone therapy, my tumor was reduced from 9 x 6 cm to 4 x 4. The MO I was referred to as a second opinion, in order to change my mind from no chemo to yes chemo, said she was ordering two tests (the gene mutation and the mammaprint). I don't know the results yet.

    My staging lowered but my grading changed from 0 to 1. I will be receiving radiation therapy after having the PS implant a tissue expander and fill it a little. I had a total right mastectomy so that I would like to know what they will be irradiating. The tumor was extracted totally as well as the only lymph node that marked as positive in the axillary region. That brings a lot of questions and worries since they will be irradiating non-cancerous tissue in my chest wall and axilla. Since I didn't accept chemo, I am not sure I can reject radio. However, the side effects of external radiation scares me a lot. I don't if the center has proton radiation.

    Is almost 4 am and I need to sleep at least one hour. Good night all. Thanks.

  • barbe1958
    barbe1958 Member Posts: 7,605

    I was worried about rads this time as I had avoided them the first time. They had to use a bolus which keeps the rays from going too deep to my heart and lung. The recurrence was to my chest wall, not in breast tissue. They had to radiate in case there were any random cells floating around looking for somewhere to set up shop. They radiated my chest wall, under my left arm, up to my neck on the left and even came up through my back into the sternum from the back. I felt very confident about the rads this time. I'm also on Arimidex to help keep another recurrence at bay. If I had taken Tamoxifen or another AI on the first round, I'd have to be on an IV chemo now. At least I can start with something easier to take (no hospital visit) though my onco said he hoped we'd get a year out of it before the cancer showed up somewhere else and I had to go on IV chemo.

  • hopeful82014
    hopeful82014 Member Posts: 887

    Barbe, you keep saying that if you'd had tamoxifen or an AI on the first round you'd be on IV chemo at this point. I'm not sure that's an accurate generalization - maybe in your particular case, but certainly not all.

    My understanding is that many women who recur on tamox. are put on AIs upon recurrence and if progression occurs there is also faslodex (an injection, and a different mechanism of action from AIs). I'm not quarreling with your treatment plan but it makes it sound (to those who might not know otherwise) as though maybe there's a benefit to holding off and 'saving' AIs for treatment of recurrence, and I really don't believe that's the case.

    Of course, it totally stinks that you did not get sufficient treatment when you were first dx. That's really, deeply appalling.

  • lisey
    lisey Member Posts: 300

    ladies I just wanted to let you know that the oncology nurse called and the most the company would Bill me personally is $500 for both sets of tests and she went ahead and ordered both sets anyway. I'm excited to finally know exactly what my subtype is and move forward with a treatment plan that's catered to my genetic tumor markers. Knowledge is power.