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Shannon Doherty & The Amount of Misinformation About MBC

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divinemrsm
divinemrsm Member Posts: 6,160

In the news today, celebrity actress Shannon Doherty revealed her breast cancer had returned and she is now stage iv. It is sobering news to a lot of people, and I'm sorry she is where we are with this disease.

I check out stories on morning news show Facebook pages, and not surprisingly, hers is a trending topic. This leads to comments from people everywhere and it is such a shame to see how misinformed people still are about stage iv/metastatic breast cancer.

For starters, I believe Shannon was originally diagnosed with stage ii bc. She was treated and says she was in remission for 5 years. Now she says she is stage iv. Yet, technically, wouldn't she would be categorized as having stage ii breast cancer that has metastasized?

Another issue: Shannon says she is currently suing State Farm insurance for house related damages she feels owed to her. State Farm issued a statement disputing her claims and then said,”We empathize with Ms. Doherty's health issues and wish her a full recovery."

Needless to say, State Farm is clueless!

Another example of lack of understanding: I commented on the FB page that I'd like to know what treatment Shannon is currently on. One woman's response is: “There is no treatment. Unfortunately, all they can do now is make her comfortable."

I guess all those millions Ibrance, Verzenio, Piq-Ray and Kisqual spend on glossy TV commercials are completely going over the heads of some people! On so many levels, they just aren't getting it!


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Comments

  • sbaaronson
    sbaaronson Member Posts: 121
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    I hope she really starts talking about the reality of this stage breast cancer. Although she is not an A-list celebrity, she has a megaphone, let's see what she does with it.

    People don't understand...

  • OCDAmy
    OCDAmy Member Posts: 289
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    Once breast cancer has metastasized beyond the lymph nodes it is metastatic breast cancer or stage 4 breast cancer.

  • sondraf
    sondraf Member Posts: 1,617
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    I concur, Mrs. M - She was first diagnosed five years ago, was only technically 'in remission' for about a year. There also seemed to be some sort of confusion about her initial diagnosis in terms of how far it had spread - they didn't think initially it was in the nodes, oh then it was and then she was having chemo and surgery.

    Edit: read somewhere else she started with hormone therapy, it spread to the nodes, then she did single MX, chemo, radiation, and reconstruction that sounded pretty awful.

    When she was first diagnosed she was suing her business managers for not making a payment that allowed her health insurance to lapse - which meant she went a year before it was detected. This time she is suing State Farm for the payout on her home impacted by the California wildfires, but is getting ahead of the Stage IV story before those documents are made public. She's been Stage IV for a year already - and got up and went and worked and gee, looked and acted pretty darn normal for a year and now some people think she is on death's imminent door?

    She is only 6 years older than me - I watched BH90210 as a teen, and Heathers is one of my all time favorite movies. I really hope she does use her platform for education, but if she chooses not to do so, that is her right as well.

  • candy-678
    candy-678 Member Posts: 4,128
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    Divine- I too noticed what State Farm had to say, " Wish her a full recovery". Not.

    I do not understand myself about the naming of this. Maybe it really doesn't matter. Stage 2 with cure. Now recurrence 5 years later at Stage 4. ???

    I hope she can use her fame to help the public to understand MBC. Yeah, I wonder what the public thinks about those glossy ads for Verzenio, etc. Maybe they need to use the money to help us fighting this rather than those glossy ads.

  • husband11
    husband11 Member Posts: 1,287
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    Cancer is staged based on the evidence at hand. If she met the criteria for stage II, then that is what she would be staged at. Now that it is apparent that it spread, it is staged at Stage IV. My wife was Stage III, and now she is Stage IV. Staging changes if there is spread discovered.

  • divinemrsm
    divinemrsm Member Posts: 6,160
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    OCDAmy, as this is the stage iv section and it doesn't appear you are stage iv, I would like to kindly state that you are misinformed as to how a person's stage of cancer is registered depending on when metastases occurs.

    Husband, I believe your wife would be classified as stage iii with metastases. The origInal stage has metastasized.

    Those diagnosed de novo with breast cancer spread beyond the breast are stage iv.

    Living with the disease and being on this forum for 9+ years, there have been discussions on staging of cancer and that's the information I've learned.

    Sondra, thanks for the additional insights into Shannon's story and I agree she has the right to decide what she wants to reveal about what she's dealing with. It's too bad she's being out-ed by State Farm but unfortunately in this day and age, celebrities' privacy is never respected.


  • sondraf
    sondraf Member Posts: 1,617
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    She did make a statement in the interview that I thought was a good start to at least changing some perceptions:

    "I thought, when I finally do come out [with my diagnosis], I will have worked 16 hours a day," she added. "People can look at that and say, oh my god, yeah, she can work. And other people with Stage 4 can work, too. Our life doesn't end the minute we get that diagnosis. We still have some living to do."

    I think a lot of the general public (hell, I know I was one!) hear Stage IV and assume all cancers that advanced have the same immediate death outcome which muddies the waters further, beyond the technicalities of Stage X, metastasized to Y (unless de novo I guess).

  • husband11
    husband11 Member Posts: 1,287
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    From this site, Stage IV does not have to be de novo to be stage IV:

    Stage IV

    Stage IV describes invasive breast cancer that has spread beyond the breast and nearby lymph nodes to other organs of the body, such as the lungs, distant lymph nodes, skin, bones, liver, or brain.

    You may hear the words "advanced" and "metastatic" used to describe stage IV breast cancer. Cancer may be stage IV at first diagnosis, called "de novo" by doctors, or it can be a recurrence of a previous breast cancer that has spread to other parts of the body.

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    “wishing her a full recovery”.....kinda sounds like “so when does treatment end for you?” ..ugh.

    So sorry to hear about Shannon.

    Would it be accurate to say Stage 4 is not an immediate death sentence, but more dependent upon how the cancer at this stage responds to available treatments?

  • OCDAmy
    OCDAmy Member Posts: 289
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    Where did you get this information? Stage 4 breast cancer is breast cancer that has spread (metastasized) beyond the breast and adjacent lymph nodes.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,965
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    We have had many a discussion of what to call it. Stage IV, if it's de novo is clear. The debate surrounds being dx'ed at an earlier stage and then progressing with metastasis. Very few folks I know would say, for example, " I have stage II bc with metastases to the lungs", yet technically this is correct. It is much more efficient to just say stage IV, even if you were initially an earlier stage. IN the end, does it really matter?

    Celebrities, like anyone, pick and choose how much info to reveal. I'm sure many of us have done that when speaking to people about our bc. Clearly, the average person does not have the kind of audience that a celebrity has so we wish they would give clear, currently correct info, but what they say or don't say is up to them. I hope, as I would for anyone, that Ms. Doherty does well.

  • gb2115
    gb2115 Member Posts: 553
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    I apologize up front if I'm wrong for posting here, not personally being in stage 4. I read the news about Shannen today, so naturally clicked on this thread.

    The staging is confusing.

    It's interesting, that if stage 4 is technically only de novo, how oncologists still call it stage 4. Maybe it's easier to put it all in the same category. I have a family member who has metastatic recurrence, and the oncologist (who's a respected doctor) told her it's stage 4. There was never a differentiation expressed.

    I know it doesn't really matter, but people will never understand the difference if the medical field isn't differentiating. So she and the news are probably calling it that because that's what the doctor probably said.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,965
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    In the end, does it matter if we say stage IV or stage X with metastases to wherever? I think it matters for your personal history and certainly for your doctors but in everyday conversation with the average layperson, it is not of great significance and saying stage IV is more readily understood.

    I was dx'ed with mets about 6 weeks after being staged IIB. The discovery was accidental and the met was already 2 cm but only grade 1, so in all likelihood I was never IIB. As far as I'm concerned it's far easier to say stage IV.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    My original dx was stage 3, grade 3. Had bmx, 11 nodes removed. 7years later it came back in other side nodes. 7 taken out. MO says I am stage 4, on ibrance.

  • RangerGranger
    RangerGranger Member Posts: 6
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    A cancer's stage does not change

    An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).

    For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.

    If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.

    This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer

  • RangerGranger
    RangerGranger Member Posts: 6
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    sorry I can yet post links put above is from American Cancer Society Understanding Your Diagnosis Staging


    in actuality MANY oncologists and patients use Stage IV for all MBC. I think that even if you “technically” are not Stage IV that isn’t much comfort....on paper technically you don’t, but the reality is you do 😔😔

  • finallyoverit
    finallyoverit Member Posts: 134
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    @Sondra.. that’s exactly why after almost 3 years of being stage iv, not a single coworker and only 1 friend knows. I still work 60+ hour weeks, volunteer about 30 hours a month and live a pretty normal life. I have several reasons for keeping the info to myself, but the most important is that it’s none of anyone’s business.. period

    I’m sorry that Shannen’s cancer has progressed and that she wasn’t able to maintain her privacy. No one had that right to take that decision from her. To each their own, whether they want to share or not, but imho, no one has the right to make the decision for you, celebrity or not. I wish her the beat

  • candy-678
    candy-678 Member Posts: 4,128
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    Not that the names matter, because it is what it is. We are being treated with the meds---CDK 4/6 inhibitors, PARP inhibitors, etc. The treatment plan is the same-scan, treat, repeat no matter what you call it.

    But I call myself Stage 4 de novo due to finding the liver met 3 months after the Stage 2 diagnosis and it was a large liver tumor at 8 centimeters and also in the bones- spine and pelvis. It did not metastasize AFTER the initial diagnosis, it was there all along. We found the mets accidently on a CT for something else. We did not do any scans at the time of the diagnosis. Standard protocol not to whole body scan for lesser stage. If we would have scanned- CT, PET, etc- we would have seen the bone and liver involvement and never had the mastectomy or started the IV chemo. Thus I was de novo Stage 4. Whole body scanning should be done on any woman diagnosed with breast cancer.

  • mab60
    mab60 Member Posts: 365
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    Ranger is correct. It is all driven by SEER data collected by the National Cancer Institute. Your stage remains the same given at diagnosis and if you recur it is stage x with Mets. I am not technically savy enough to post the articles but you can do a google search.


  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    Does anyone know why SEER won't update the data to include statistics for those who metastasize after original dx? I know metavivor is pushing hard for updating SEER data.

  • RangerGranger
    RangerGranger Member Posts: 6
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    I would guess SEER does not track MBC recurrence because overhauling the existing system would be expensive. Plus the people responsible for tracking such things currently are preoccupied with recent changes to early stage definitions, I asked a cancer registrar why MBC reccurences aren’t tracked and she offered some lame excuse along the lines of “People with an MBC diagnosis often get upset and pursue care elesewhere.” and yet these patients still must request their records be transferred...

  • mab60
    mab60 Member Posts: 365
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    Ranger is correct again. It is money. There are many articles about this on the web. Not seen and not counted cure today was published in November. It is a quick read if you google it.


  • beesie.is.out-of-office
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    Some website links here, with my apologies for posting in the Stage IV forum.

    "The stage of cancer doesn't change

    Once a person is told what stage the cancer is (either the clinical or pathologic stage), the stage of cancer doesn't change. If a stage 2 cancer comes back (recurs) after it is treated, it is still stage 2 cancer that has recurred. And if the cancer has spread to a distant part of the body after it is treated, it is still stage 2 cancer but it is metastatic. This is important because the stage at diagnosis is used to study and treatments for specific stages of cancer.

    Restaging

    Restaging helps doctors plan further treatment when cancer comes back or gets worse after the initial treatment. Restaging doesn't mean that a stage 2 cancer changes to a stage 3 cancer. The stage of a cancer doesn't change. But a tumour initially staged as a T2 may be described as a T3 or T4 if the cancer has grown larger or grown into nearby tissues. This may be found with further tests after treatment. When restaging is done, it is shown with a lowercase "r" before the letters TNM on medical report"

    .

    "A cancer's stage does not change

    An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).

    For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.

    If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.

    This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

    At some point you may hear the term "restaging." Restaging is a term sometimes used to describe doing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often the same tests that were done when the cancer was first diagnosed (such as physical exams, imaging tests, biopsies, and maybe surgery) will be done again. After these tests a new stage may be assigned. It's written with a lower-case "r" before the new stage to note that it's different from the stage at diagnosis. The originally diagnosed stage always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials."

    .

    "Restaging

    The stage of a cancer does not change over time. If the cancer comes back or spreads to another part of the body, the more recent information about the size and spread of the cancer is added to the original stage.

    Sometimes, a doctor might "restage" a cancer to determine how well a treatment is working or to get more information about a cancer that has come back after treatment. This process uses the same staging system described above. Usually some of the same tests that were done when the cancer was first diagnosed will be repeated. After this, the doctor may assign the cancer a new stage. The doctor then adds a lowercase "r" before the new stage to show that it is different from that of the first diagnosis. However, this is not common."

  • Yogatyme
    Yogatyme Member Posts: 1,793
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    Once again, Beesie, you have made the confusion so clear!! I was completely mystified about this and now it makes perfect sense. Thanks for all your great info.

  • dutchiris
    dutchiris Member Posts: 783
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    So that would mean stage 4 survival statistics only apply to those diagnosed de novo? Where would one find survival statistics for someone who has progressed? Wouldn't this make the term de novo unnecessary?

  • mab60
    mab60 Member Posts: 365
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    thank you so much beesie for that detailed information. That has been my understanding as well. It does make me wonder whether patients with Mets are understated in statistics. If funding is based on number of patients with Mets, are they being tallied in statistics if they are classed stage 2 with Mets as opposed to stage 4.

    It would appear to me that patients with Mets could be understated.




  • gb2115
    gb2115 Member Posts: 553
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    Very interesting information, thank you all for clarifying. I didn't know any of this because we were just going on the wording the oncologist used. Does BCO know that their staging information is incorrect?

  • divinemrsm
    divinemrsm Member Posts: 6,160
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    Thank you all for your insights into this subject.

    gb, you ask a good question. It appears BCO has staging information that differs from the American Cancer Society information. Does BCO need to revisit their staging information to see if they want or need to make changes?


    *********************

    Here is the article Mab60 mentioned from the magazine Cure Today. Italics are mine.


    image

    Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

    I first heard about the National Cancer Institute's SEER (Surveillance, Epidemiology, and End Results) Registry in 2017 at Living Beyond Breast Cancer's annual conference for people with metastatic breast cancer. A cancer advocate, Katherine O'Brien, had put together an online petition for the Metastatic Breast Cancer Alliance asking that data collection be modernized. I was surprised when a couple of simple questions dramatically revealed whose stage 4 cancer was being "seen" by SEER and whose was not.

    Hint: The vast majority was not being counted.

    The reasons for this lack of data are complicated, but mostly come down to a lack of financial resources. SEER has been counting cancer by incidence, initial treatment, and mortality since 1973 in select populations of certain states. From this data, we receive the statistics about cancer from organizations like the American Cancer Society and the American Society of Clinical Oncology. The SEER registry provides a lot of interesting data that can be tracked by cancer type, stage at diagnosis, age, race, etc.

    What you can't do is track recurrence information or know with certainty, within a few thousand individuals, how many people are living with metastatic breast cancer (or any type of metastatic cancer).

    That's because SEER doesn't track recurrence information. I count in SEER because my diagnosis was stage 4 from the start, but most of my metastatic breast cancer friends do not. They don't count until they die, and only then if the death certificate lists breast cancer as the cause.

    I think about this every time I see news about updated cancer statistics. I always have questions:

    How can you know us if you don't count us? Estimates tell us that about 6% of the people with metastatic breast cancer were stage 4 from the start, which means the vast majority were once diagnosed at earlier stages. This is an accepted statistic, recently repeated here by the American Cancer Society. But what about the rest of the people with metastatic breast cancer - do we know much, statistically, about them? For me, the five-year survival statistics in breast cancer are particularly telling. The current data say that 89.9% of people diagnosed with breast cancer are alive at five years, but because recurrence data are not collected we don't know how many of that 89.9% are living with stage 4 breast cancer. Though factually correct, the data misleads us. Since SEER doesn't track cancer recurrences, including metastatic spread, a person who was stage 2 is always stage 2, even if she is alive at five years with metastatic progression that will eventually cause death.

    How do we know what's working if we're not tracking patients? One of the shortcomings of the SEER Registry is that because it doesn't track recurrences, and therefore doesn't reveal when patients recur with metastatic disease nor how long they live, the data collected and shared does not provide a complete picture. For instance, it can't tell us what percentage of people diagnosed with early-stage breast cancer progress to metastatic breast cancer. The American Society of Clinical Oncology is precise in that regard, stating: "More research is needed to determine how many people with non-metastatic breast cancer later develop metastatic breast cancer." If patients were counted by cancer specifics, including recurrence and treatment over time, we'd have a clearer picture of what is actually happening with breast cancer. This method of not following patients made sense when SEER first started collecting data, but the data collection needs to take advantage of modern technology. I was recently on Capitol Hill with Metavivor asking for Congress to make this better data collection a reality.

    Is this a case of bad data in/bad results out? If you don't know how many people are living with metastatic disease, how many early-stage breast cancer patients develop metastases, when their cancer became metastatic, or how long they've lived with metastases, then you're missing crucial pieces of information. The statistics matter because they influence what kind of research gets funded, help oncologists know what to say when a patient asks about her chances of cancer returning, and help those already living with metastatic breast cancer by counting them in a meaningful way.

    Good research, life-saving research, demands the best data. The American Cancer Society report showed some alarming news about breast cancer, including the fact that the decline in the death rate has slowed over time. Since estimates tell us that about 42,000 women and men in the United States will die from breast cancer this year - a number that has remained largely unchanged for decades - the clock on better data collection is ticking


    Story link: https://www.curetoday.com/community/martha-carlson/2019/11/not-seen-and-not-counted

  • olma61
    olma61 Member Posts: 1,025
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    Good article. JMO but it sounds like SEER needs to change, not BCO or anyone else who uses MBC and Stage IV interchangeably.

  • beesie.is.out-of-office
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    Sorry for posting here again. DivineMrsM, this is your thread so I will delete this post at your request.

    SEER has up to now not had a mandate or funding to track recurrences or to track the number of people living with metastatic disease. SEER tracks diagnoses, and they track survival/mortality. Yes, they absolutely should start to track this additional information. But the fact that SEER does not have this very necessary data has nothing to do with how staging is identified. Metastatic recurrences still need to be associated with the original stage, not changed to Stage IV.

    It is very important to maintain staging as it is currently defined by most cancer organizations now, with the stage not changing from the original diagnosis but with the additional information about recurrence added on. This is necessary to measure the survival/mortality rates for Stages I through III. If someone who is originally Stage II is changed to Stage IV upon the development of mets, then all mortality stats will be associated with Stage IV, and the survival rates for Stages I through III will always be 100%. Obviously that's very wrong.

    So there are two parts to this issue. One is identifying the number of individuals who are living with either Stage IV or recurrent metastatic breast cancer. The other is to accurately record the survival/mortality rates by stage.

    How we choose to talk about it is one thing, and there probably is little harm in using Stage IV and MBC interchangably. But in how breast cancer is officially recorded and tracked, maintaining the difference is crucial.