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How can someone jump from 1A to 4 quickly?

lisey
lisey Member Posts: 300
edited October 2019 in Stage I Breast Cancer

So I'm lurking on all the boards and I keep seeing women with my type of numbers suddenly being diagnosed as Stage 4 fairly quickly. Yet, according to the SOFT study, 98.6% of Stage 1A women taking Tamox and no chemo don't have any Distance Mets at 5 years. Why am I seeing such a disconnect?

One of my concerns is that standard protocol says that if there is no symptoms and no node involvement, they don't do whole body scans - as they lead to a lot of false positives. I'm Stage 1A, Oncotype Score 20 (waiting on Mammoprint) and I just don't get how someone like me could in a month or even year be diagnosed Stage 4... Is the SOFT study results to be believed as far as my outcome percentages?

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Comments

  • KathyL624
    KathyL624 Member Posts: 47

    I am 1A too and feel the same way. My doctors have been so optimistic and I was feeling good about things (I have a low oncotype which my doctor says trumps everything) and then I read about women here and it makes me so scared and hopeless. I have been driving myself crazy with worry and my husband doesn't know what to do anymore.

  • bluepearl
    bluepearl Member Posts: 133

    Even with small tumours you can get circulating tumour cells. Cancer cells can be sneaky too. Brest cancers smaller than 1 cm are more problematic if they are triple negative or are Her2+.......and some consider the Pr- a higher risk. What you won't see is a lot of women who have your profile posting that they are doing great'; you will see those who have had a treatment failure. Stage 1A is very good unless you fall into the TNBC and Her2 category and even then, it is way better than stage 2 onwards. I fell into the 5% category and got a second breast cancer in the other breast two years later so I don't like stats much, but that said, celebrate each day that your life has been saved by early diagnosis and don't think about tomorrow. It is NEVER guaranteed to any of us.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,644

    I agree with bluepearl, particularly with respect to those who have a similar dx to yours. They most often go on their merry way and don't keep posting. This not is not a good representation of all women who are dx'ed with bc. Those who progress or continue having bc/tx related issues are the ones who post.

    There is no definitive way to test for bc recurrances or mets. Even scans and tumor markers can't disease when it is too tiny. It is a hard reality, but there truly are no guarantees. The only advice I can give is to not let worry about what might happen tomorrow, steal your joy today.

  • KathyL624
    KathyL624 Member Posts: 47

    Bluepearl, did you do hormonal therapy the first time? My MO is so confident in tamoxifen, but I think it's a lot to ask of one little pill.

  • ksusan
    ksusan Member Posts: 461

    You don't see my mother or sister posting here--they had small IDC tumors with no nodes, did lumpectomy, radiation, and Tamoxifen/AI. Neither ever read or posted here, and I doubt they would unless they ran into additional medical trouble and needed information.

  • barbe1958
    barbe1958 Member Posts: 7,605

    Stage is ONLY used for treatment purposes and is no indicator of probability of mets. In fact, they've been considering dropping the term stage for a couple of years now and some places already have. Although I'm technically stage IV, theoretically I'm still stage I with recurrence. So as you can see, it really doesn't matter what you are called, cancer will do it's own thing anyway. And that 98.6% is pretty much baloney. There's another thread here with facts showing 30% of stage I go on to mets.

    There is just as much odds as a stage I getting mets as a stage III. It's all a crap-shoot. (The higher stages actually get more treatment so have probably better odds than the lower stages, so my comment might be an exaggeration....)

  • lisey
    lisey Member Posts: 300

    Barbe, the 98.6% was a subset of luminal A women within the SOFT study.... are you saying the SOFT study is bogus?

  • barbe1958
    barbe1958 Member Posts: 7,605

    I didn't see anything about Luminols in the original post. Also, my comment should say that 30% of EARLY stage breast cancer go on to mets. That's what's been proven.

    ER+ slow-growing breast cancer (grade one, say) doesn't respond to chemo as it's slow growing and it's AFTER the 5 year mark that you have to be more diligent. That's why there is no "remission" after 5 years clear with breast cancer. You may be told there is "No Evidence of Disease", or NED. But there is no cure. I wish people could just get that. Yes, millions go on to die of something else.....I know, I know. But you are never "cured" of breast cancer. As someone above said, circulating tumour cells, or CTC's as they are also known by, can land anywhere they like in your body and become mets.

    I just hate seeing people not being vigilant thinking they are cured.

  • lisey
    lisey Member Posts: 300

    Kayb, that makes a lot of sense... I couldn't image 30% of all stage 1's go to become stage 4... that would be really hard. I did read that other thread and it was buried, but if you read the whole thing, you see it's 30% of stages 1,2 and 3a, not just stage 1.

    Well.. here's to hoping the damn Tamoxifen does it's job for me... another poster just posted that Tamoxifen only works on between 30% to 50% of the women who are on it... so that's another thing weighing on me.... It's all just such a gamble isn't it? I chose not to do Chemo with an Oncotype of 20 and possible Luminal B diagnosis (low PR at 5% / ki67 at 30%). I'm ready to jump over to AI with OS if Solfeo's stat about Tamox only working on 30 - 50% of the women is correct. Waiting on the metabolism test as well as the mammaprint to decide what I'm doing. The SOFT study was REALLY reassuring to me as the numbers were really good for the 5 and 10 year points.

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

    "Stage is ONLY used for treatment purposes and is no indicator of probability of mets."

    No, that is absolutely incorrect. Stage is a very direct indicator of the risk of mets. Stage I - relatively low risk of mets. Stage III - considerably higher risk of mets. Stage II - in between. That doesn't mean however that some Stage I women won't develop mets, or that many Stage III women won't do well and never recur.

    The fact that you were Stage I but developed mets doesn't contradict this fact. It just means that you had crappy luck and are one of the relatively small group of Stage I women who develop mets. And as you've pointed out in other posts, you know that you were under-treated when first diagnosed. I recall at the time you arrived here that many of us were concerned about the fact that you weren't offered chemo or even Tamoxifen; as someone diagnosed and treated in the same healthcare system as you (Ontario), I knew that your treatment plan was not in line with the treatment standards at that time for your type of diagnosis. As you've said, your doctor became ill and you fell through the cracks.

    I wish you hadn't developed mets. But you can't use your single example to negate all that goes into the determination of staging, and what it means relative to risk and prognosis.

  • barbe1958
    barbe1958 Member Posts: 7,605

    Beesie, as I said above, my ER+ cancer was slow growing and chemo would have been wasted on my cancer. As for Tamoxifen, yep, that does annoy me and even my onc said I "fell into the cracks and got missed". BUT, having become stage IV, my first line of treatment is an AI so instead of having to go directly to IV chemo, I get to take Arimidex.

    As for stage being used for treatment, here is text directly from cancer.net:

    Stages of Cancer

    Approved by the Cancer.Net Editorial Board, 09/2015

    Staging helps describe where a cancer is located, if or where it has spread, and whether it is affecting the other parts of the body. Doctors often use tests to determine a cancer's stage. Staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor:

    • Plan treatment, including the type of surgery and whether chemotherapy or radiation therapy are needed
    • Predict the chance that the cancer will come back after the original treatment
    • Predict the chance of recovery
    • Talk about the diagnosis in a clear, common language with the entire health care team
    • Determine treatment effectiveness, and
    • Compare larger populations with the same diagnosis to research new, more effective cancer treatments.
  • barbe1958
    barbe1958 Member Posts: 7,605

    GRADE is what determines the aggressiveness of the cancer. I've often said I'd rather be stage III with grade I cancer, than stage I with grade 3! Here is a quote from the Canadian Cancer Society:

    Staging and grading

    Staging is a way of describing or classifying a cancer based on the extent of cancer in the body. The stage is often based on the size of the tumour, whether the cancer has spread (metastasized) from where it started to other parts of the body and where it has spread. Stages are based on specific factors for each type of cancer.

    Grading is a way of classifying cancer cells. The gives the cancer a grade based on how different they look from normal cells (differentiation), how quickly they are growing and dividing, and how likely they are to spread. Doctors sometimes use the grade of the cancer to figure out how slowly or quickly the cancer may be growing.

    Different staging and grading systems are used for different cancers. Some types of cancer do not have a specific staging or grading system.




  • lisey
    lisey Member Posts: 300

    Barbe, Staging IS used as an indicator to check for mets. As a Stage 1A, the protocol means they don't even check me for mets. No Pet scan, no markers... they are assuming I have no mets since my lymph node is clear currently. So Staging MUST have some indicator of odds of mets. It's not saying there's 100% chance I don't have it, but from what I'm understanding, there's a 98.6% chance I don't for the next 5 years so long as I take my Tamoxifen (according to SOFT) Would you disagree with that?

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

    Barbe, just read the words of what you provided from cancer.net. The words from your quote that I've copied over and put in bold and italics are all indicators of prognosis, the probability of mets and the likelihood of long-term survival.

    Staging helps describe where a cancer is located, if or where it has spread, and whether it is affecting the other parts of the body. Doctors often use tests to determine a cancer's stage. Staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor:

    • Plan treatment, including the type of surgery and whether chemotherapy or radiation therapy are needed
    • Predict the chance that the cancer will come back after the original treatment
    • Predict the chance of recovery


    Here is another quote from another of your sources, the Canadian Cancer Society: (bolding and italics are mine)

    Stage

    The stage of breast cancer is an important prognostic factor. Lower stages have less risk of the cancer coming back (recurring) and a more favourable prognosis. Higher stages have a greater risk of recurrence and a less favourable prognosis.

    The most important stage-related factors are lymph node involvement and tumour size.


    From another Canadian source:

    Statistics are given below for the overall survival rates for breast cancer based on certain stages of disease development.

    Breast cancer staging is largely determined by the presence and size of a tumor, whether the tumor is node negative or positive, and whether it has metastasized beyond the breast. If breast cancer is diagnosed and it is determined that there is no metastasis to the lymph nodes (node negative, stage I or less) then the chances of survival are extremely possible. Once breast cancer has metastasized to the lymph nodes the mode of treatment tends to shift to the chemotherapy medicines, and the odds of survival are somewhat lower.

    image


    From Komen: (again, the bolding and italics are mine.)

    Chances for survival vary by stage of breast cancer.

    Non-invasive (stage 0) and early stage invasive breast cancers (stages I and II) have a better prognosis than later stage cancers (stages III and IV). And, cancer that has not spread beyond the breast has a better prognosis than cancer that has spread to the lymph nodes...

    ...Overall survival varies by breast cancer stage. People diagnosed with stage 0, I or II breast cancers tend to have higher overall survival rates than people diagnosed with stage III or IV breast cancers. However, overall survival rates are averages and vary depending on each person's diagnosis and treatment.


    Lastly, from the AJCC, the group that determines cancer staging:

    Cancer staging is the process of determining how much cancer is in the body and where it is located. Staging describes the severity of an individual's cancer based on the magnitude of the original (primary) tumor as well as on the extent cancer has spread in the body. Understanding the stage of the cancer helps doctors to develop a prognosis and design a treatment plan for individual patients.

    .

    Yes, there are obviously many other factors that go into the determination of prognosis, including grade, ER/PR status, HER2 status, age of patient, etc..

    And yes, obviously staging is one of the factors used to determine the treatment plan, atlhough less so these days with the Oncotype test and with the awareness that certain subtypes react better or worse to different treatments. In my previous post, my saying that staging is used to determine prognosis was not to suggest that staging is not also used to help with treatment planning.

    But it is simply wrong to say that stage is not an indicator of the probability of mets, and to say that "there is just as much odds as a stage I getting mets as a stage III". That's just not true. At a high level (before going into the very detailed specifics of an individual's diagnosis and risk factors), stage remains the primary measure used to determine prognosis. The risk of mets is generally lower for someone who is Stage I, somewhat higher for someone who is Stage II and higher still for someone who is Stage III. Therefore, as a result, the chance of long-term survival is best for those who are initially diagnosed Stage I, somewhat lower for those who start off at Stage II and lower still for those who are diagnosed at Stage III. Those are the facts.

    Just curious.... what types of cancer don't have a staging system?


  • nancy2581
    nancy2581 Member Posts: 407

    Can I ask why people keep saying chemo doesn't work for grade 1. I've seen this a few times - it doesn't work on slow growing cells blah blah blah. . If this were the case why would chemo be given to those with grade 1? I am grade 1 and had chemo. I do not regret it. My onc is sharp and I trust her 100%, just get tired of seeing "chemo doesn't work for grade 1". Well chemo might not work for any grade or it just might

    Nancy



  • meow13
    meow13 Member Posts: 1,363
  • voraciousreader
    voraciousreader Member Posts: 3,696

    bees....there are different kinds of staging for different kinds of cancer, but from a quick look, it does seem that most cancers do have staging.....Brain cancer uses stages, but doesn't use lymph node benchmarks because it doesn't affect the lymph nodes....and skin basal cell cancers usually does't stage because it rarely metastasizes. However, skin basal cancers still can be staged.


    I am curious too and wonder if there are any cancers that do not stage at all....

  • nancy2581
    nancy2581 Member Posts: 407

    Thank you kayb and Meow13. Though I did have a mitotic rate of 1 my overall score was 5 (so high side of grade 1). I also had LVI, a 2.8 cm tumor and 1 positive node. That all played a factor into why I got chemo. I just have a hard time when people flat out say chemo doesn't work for grade 1. There are other factors to consider. Just my two cents

  • dragonsnake
    dragonsnake Member Posts: 24

    Thank you, kayb. It shows how descriptive is biology as a discipline. It also reminds us how subjective is pathology of cancer.

  • barbe1958
    barbe1958 Member Posts: 7,605

    No one on this thread said chemo doesn't work for stage one. It doesn't work for slow growing cancer. Period. Chemo kills fast growing cells. That's why you lose your hair and nails. They are fast growing cells. Higher grades of chemo grow faster, ergo, chemo is a good treatment for them.

    You can have STAGE III but GRADE I. You can also be STAGE I and GRADE III. It's the grade in this case that determines the treatment.

    Beesie, it looks like we're both right really, as you highlighted sentences that fit your point, and the ones you didn't fit mine.

    It's all a combination. And a crapshoot.

  • lisey
    lisey Member Posts: 300

    Barbe, you stated a negative.. that Stage is NOT for prognosis, and it clearly is. Nancy, I would have had chemo if I had ANY lymph node involvement, whether my mitosis rate was a 1 or not. I'm just struggling right now because as people have kindly pointed out, this board is self -selecting and it's typically women who have it come back, so that's all we see. My oncologist is very positive about me not needing chemo - even with a grade 2 and an oncotype score of 20. I also had stage 1a melanoma 6 years ago, so chemo may help that return (since melanoma is only killed by a killer immune system).. There's things to weigh and even the oncotype said Chemo would only help me 3% in 10 years. BUT seeing all these reoccurances on the board makes me question my decisions.

    I'm trying to do everything I can to know about what type of cancer I have. I'm paying for the mammaprint, I'm asking if they can do the blueprint on top of it (which will definitely tell luminal A / or B) I'm getting the genetic testing for my 2D6 metabolism rate to see how I process Tamox, and I guess I'm just sitting her waiting for all of that to return and reading too many of the higher stage boards.

  • nbnotes
    nbnotes Member Posts: 338

    Lisey - I was initially thought to be stage I grade III from my BMX with no lymph node involvement, but my onc's office always does a ptscan before chemo. It was found that I had 7-10 tumors in my liver with the largest being 5.6 cm (3x the size of what was in my breast). I had no symptoms -- no pain or high liver blood work. I'm not saying that to freak anyone out, but we adjusted my treatment somewhat, and after AC, a hysterectomy, and going on an AI, I've been NED for 3+ years. Could I have gotten to NED on original stage I treatment and then "recurred" later as a stage 4 which was really just the mets resurfacing if I hadn't gotten scanned? That is very possible, and what my MO's office and nurses believe is the probability for many lower stages that go to mets, which is why they always want the full picture before they start chemo. Even that can miss things as a friend of mine had her initial scan marked as arthritis when 5 years later her mets came back and they realized she'd always been stage 4. I know there are studies out there that show it makes no difference when you know, but unless they are doing harm and not treating/telling someone that they have mets, they can't really know that. I'm thankful that I've known during this time b/c I've traveled extensively, enjoyed life,and have planned for when it comes back.

    Doctors do everything they can to kill those stupid cancer cells, but they have a way of returning as others have said. Also, remember that most people who've finished with treatment, don't continue to post here; so, the number here is skewed. I hope my example didn't freak you out, but it may provide one example of how that can happen.

  • erento
    erento Member Posts: 187

    Lisey, it seems that you're being proactive and doing your research which is something that can be empowering. Stage does matter, if you listen to oncologists talking amongst themselves (well, through podcasts), tumour size and nodal status are two most important prognostic factors that they refer to and they're what drive most of treatment decisions, in addition to hormonal and Her2 status. We're learning more about subtypes, so things are constantly changing. When I was reviewing my path report with my surgeon, I asked her what stage I was and she said that they don't do staging anymore unless it's stage 4. I think she partly said that to comfort me as I was freaking out when saw the number of nodes involved. T2N2M0 was on my path report, so they still do stage, regardless of my surgeon's attempt to calm me down!

    I read somewhere that only 40% of breast cancers have the potential to metastasize, regardless of the treatment of choice, so if 30% early stage eventually progress, does it mean that all the treatments we do in fact only helps 10% of patients? I wish I had saved that article, I'll try to find it.

  • KathyL624
    KathyL624 Member Posts: 47

    So you were going to have chemo anyway even before they found the liver mets? Did you have a high oncotype? I wish my doctors would have done at least one scan.

  • erento
    erento Member Posts: 187

    kayb, the article was about some new findings and not related to recurrence, I think this was just a comment thrown in by one of the researchers which grabbed my attention. I don't even remember what the finding was about! That would have helped in finding the article.

  • erento
    erento Member Posts: 187

    Ah found it. Not sure if I'm understanding this correctly, it's rather vague. The comment I quoted is in the second paragraph.

    https://www.sciencedaily.com/releases/2016/07/160706131445.htm

    But not every patient necessarily needs adjuvant therapy; breast cancer is estimated to recur or metastasize in only approximately 40% of patients, suggesting that a substantial number of patients suffer side effects needlessly.

  • Professor50
    Professor50 Member Posts: 86

    More than a year ago, I had this conversation with my surgeon and asked her, "Is there a time when I can think of myself as cured?" and she said, "Right now." This was after I had finished surgery and rads. I am still on hormone treatment.

    I don't necessarily run around feeling "cured" or whatever, but I also don't understand why it would bother anyone if someone feels cured. I might recur, I might not. If I am able (I hope to be able) to let go of the fact that I once had cancer and live my life everyday as I would live it-taking precautions of course-but not constantly thinking about cancer and maybe even feeling cured: What harm does that do to anyone? I admire anyone who is able to move on to that degree and smile and say "This happened to me. I had cancer. But now, I can take a deep breath and say, I'm cured."

  • erento
    erento Member Posts: 187

    Same here! And then I extrapolated that 60% wouldn't progress regardless of treatment. But at this point nobody knows who those 60% are for sure so we have to go ahead and treat everyone (though there is already oncotype test that drives treatment decisions for some patient population). And then we hear that still 30% of all early-stagers progress. So only 10% "saved"? That would be depressing.

  • MsPharoah
    MsPharoah Member Posts: 224

    Nancy2581, I agree completely with your comments. While it may be true that chemo kills more cancer cells in a tumor that is fastly dividing, I refuse to believe that the chemo I had didn't kill any cancer in my body. Hey, I really don't know if the radiation killed any cancer, either! As long as chemotherapy is a treatment, not a cure, no one can make a broad statement about its efficacy with any bc type, fast or slow growing. We educate ourselves, get proper tests, and seek out good medical advice. My onc recommended chemo and her reasons made sense to me. While we are at it, I am also tired of people saying that lobular does not respond to chemo when that is based on the amount of estimated tumor reduction when neo-adjuvant chemo is given....Ignoring the fact that measuring the extent of lobular tumors is challenging both before and after neoadjuvant chemo. I appreciate that many women can be comfortable to forgo chemo, but it really isn't comforting that the reason is that the risks outweigh the benefits. Our trusted oncologists should still provide their guidance when there are decisions to be made, and I think it behooves us to listen to them.
    MsP
  • She
    She Member Posts: 131

    "But not every patient necessarily needs adjuvant therapy; breast cancer is estimated to recur or metastasize in only approximately 40% of patients, suggesting that a substantial number of patients suffer side effects needlessly."

    ONLY APPROXIMATELY 40% Excuse me, but isn't that pretty close to HALF of ALL patients? How can 40% be referred to as "only"?

    I agree, for a Stage 1 patient these statistics can be terrifying. In reality, as individuals we will either 100% recur or 100% not recur.

    Are you aware that roughly 7% of funds dedicated to research are allocated to metastatic disease? So 7% of research funds are targeted to where 40% of All BC patients will end up.

    We need to move away from the fear caused by statistics to demanding better metastatic research funding. Doesn't that make sense?

    One of the issues with metastatic disease is the patient can often be too ill to effectively advocate. This is slowly changing, there are some great Metastatic Advocacy Groups bringing our needs, and increasing numbers into focus.

    What we really need is earlier stages to step up and help us advocate. Fear generated by statistics isn't going to change the landscape of this disease. We are.

    My personal example of how unpredictable this disease is:

    20 years ago I had Stage 2b IDC, triple neg

    15 years ago I had Stage 0/1 DCIS ER/PR+ HER-

    7 years ago I had another Stage 1 DCIS with different characteristics, but still ER/PR+ HER- 3.5 years ago I had a chest wall recurrence with extensive pectoral mets ER/PR+ HER-

    1 year ago I developed a tumour in the same CWR location. It was encapsulated in diep flap fat with zero breast tissue. It was ER+ PR- HER-

    Understanding how the disease is staged and graded is important. As a Metster I think what is more important is moving past the fear and ALL stages advocating for more metastatic research.

    Did you know that currently the mets research goals over the next few years is to extend the lifespan for metastatic patients by several months? That is simply not good enough.

    I think we can all agree that many patients have a single BC event and are deemed 'cured'. In reality there are patients who go 20+ years between BC's (my Mother's two BC diagnosis were 35 years apart!) There is no cure.

    Going back to that 40% statistic, doesn't it make sense for ALL stages to unite and demand more and better metastatic research? We can let fear paralyze us or we can let it drive us.