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Stage IV: How do you define curative intent?

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exbrnxgrl
exbrnxgrl Member Posts: 5,036

On another thread, the topic of curative intent came up. This is a phrase that has always baffled and intrigued me given that stage IV is not curable. Additionally, I tend to think of a cure as a prescribed regimen or treatment protocol that consistently yields the same results. What we currently have are lots of treatment options that may or may not work. If one happens to work for a long time do we then declare it cured? If not, we go back to throwing pasta against the wall and seeing what sticks. Is that cure? I realize the phrase also contains the word intent, but intentions and cure don’t really seem to apply to stage IV.

Most of you know that I have just passed the 10 year mark with no progression since initial tx. I have not had aggressive tx, not even chemo. Am I cured? I certainly don’t think so and my mo has never used that word. I would love to hear everyone’s thoughts on “curative intent” 😊.

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  • moth
    moth Member Posts: 3,293
    edited July 2021
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    I'm hearing the phrase curative intent used in oligometastatic setting but I too haven't really seen a good definition. I also heard it thrown around with some of the new HER2 treatments at ASCO this year.

    My *guess* is that if you get certain 5 year survival rates, you start thinking of it as curative. I mean baseline early stage is high 70s to high 90s survival at 5 yrs and that's what we think of as curative treatment. There's probably some percentage where they start thinking of it as curative..

    For most people 5 years is not really what we're looking for, is it? esp in early stage but even in Stage 4.

    I'd like to hear what an MO has to say about this

  • olma61
    olma61 Member Posts: 1,027
    edited July 2021
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    I'll edit this and copy my response from another thread but to add to it - my idea of “cured" is - you get to NED *and* you maintain NED status without drugs. I don't if that's how proper medical terminology defines it, but that's how I think of it.

    AlthoughER+ early stagers who are cured continue on hormone therapy, I think in their case it's considered “preventative" ? Not sure. I guess if I could go off Herceptin, stay on “ one little pill" and be NED, I would feel “cured". (Another edit: re hormone therapy, early stage is not on it indefinitely, MBC patients will be, if they're lucky enough to survive past the 5 to 10 yr course that others take)


    Definitely an interesting discussion.

    My other response:

    I think it means they are going to do more for a Stage IV patient than they normally would - local treatment for mets, breast surgery, throw the harshest drugs at it. Where palliative is just giving the gentlest treatment needed to keep the pt stable and to relieve symptoms.


    If I'm not mistaken, they say "curative intent" for earlier stage too - "intent" acknowledges that they can't know for sure you will be cured. True even for earlier stages

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021
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    xbrnxgrl,

    I actually think, had you been diagnosed more recently you might have heard curative intent in your case. Forgive me if I have this wrong but didn’t you have a single bone met which was radiated? That would be defined as oligomets and it seems that zap did it’s job. It’s wonderful to think you might be disease free!

    It’s a bit tricky with bone mets as the remnants remain. I know, in my case, my MO was not sure about progression as what showed up on CT scans could also have been signs of healing. I’ve not had a PET scan so can’t say what that would show.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    Sadieservant,

    Yes, in addition to several txs not being available 10 years ago, words like oligometastases and curative intent were not commonly heard. This truly is an instance when being part of the old guard gives me hope. Things will never progress as quickly as we want them to but I am heartened by what has happened over the last ten years.

    Yes, you are correct. One 2 cm met to the upper femur, rads x15 and one AI or another for the entire time. Like my breast tumor it was also grade 1. And while all of these things boded favorably for me, there have been others with similar stats that haven’t done as well. BTW, since I truly have no idea why I haven’t progressed there is no way I would go off meds. I’m not into tempting fate.

    My bone met still shows on PET scans but is not metabolically active. My mo called it an artifact. I’m still not able to fully wrap my head around curative intent simply because cure or curative implies that the cure has been identified and proven to be effective for most people. My mind is back on the pasta theory and I simply can’t call that a cure.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021
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    Totally understand why you would stay on the AI. I would do exactly the same thing in your circumstances. After all, what if….

    It would be interesting to look at the term curative intent through a regional lens. The reason I ponder this is the significant difference in standard treatment depending on where one lives. For instance, local treatment of visceral mets is not an option here in Canada with the exception of instances of oligometastases. And yet, it seems much more common in other countries.

    Interesting…

  • illimae
    illimae Member Posts: 5,645
    edited July 2021
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    My understanding of curative intent is basically that the treatment used would be similar to what is recommended for earlier stage cancer, typically consisting of standard chemo for your subtype, surgery and radiation. I was diagnosed de novo and oligo with a single bone met and in that scenario, my team wanted to hit it hard hoping to improve my odd of knocking it back, then letting Herceptin maintain with the lowest possible cancer burden we could achieve.

  • sf-cakes
    sf-cakes Member Posts: 573
    edited July 2021
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    My doctors explained they are utilizing much more aggressive treatment than they used to in the not so distant past for MBC - like Olma said, not just offering palliative care. Particularly for oligometastatic cancer. I talked with my RO about the two intense fractions of SBRT he recommended, we discussed the SABR-COMET clinical trial outcomes (thus far), and the hope that the SBRT could ultimately destroy/silence the met and keep it from spreading in the distant site where it was found. He and my MO (both at Kaiser) basically said, "this is the recommended treatment now, we want to give you the best chance of as long a life as possible". But they did not use the word cure.

  • olma61
    olma61 Member Posts: 1,027
    edited July 2021
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    Couldn't resist googling and lo and behold,found a paper criticizing these terms as imprecise and not reflective of the current state of cancer care. They propose new terminology.

    From 2017 -

    Curative, Life‐Extending, and Palliative Chemotherapy: New Outcomes Need New Names


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5553954/

  • jensgotthis
    jensgotthis Member Posts: 671
    edited July 2021
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    I asked my MO what that meant when first DX as he said they were going to treat me with curative intent. He said while I would never be cured by their current definitions, the MBC would be unlikely to be what kills me. And as Mae said their treatment decisions would be more similar to an early stager.That's what he meant by it (at least this is what I recall…happily, it's been 6 years)

  • sondraf
    sondraf Member Posts: 1,628
    edited July 2021
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    To me this seems to be the frontier where MBC passes into almost true chronic management. It may never be wholly cured, but it can be kept in stable remission for very long periods of time with very minor requirements,like diabetes, with flare ups managed quickly to return to a baseline state. Curative intent sounds great, or at least is fairly reasonable expectation at early stage, but perhaps it should be called chronic intent for oligo patients :)Olma - good find, I want to have a closer read of that this weekend.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021
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    From the conclusion of the article:

    "Given the growing disconnect between names and expected outcomes with chemotherapy, we recommend a renaming such that the terms curative, life‐extending, and palliative chemotherapy correspond to the current outcomes expected to result from the administration of chemotherapy (Table (Table1).1). In our redefined nomenclature, curative chemotherapy retains its meaning as chemotherapy given with a high likelihood of improving a patient's probability of non‐recurrence. Life‐extending chemotherapy then refers to chemotherapy whose primary intent is to extend a patient's life for a meaningful length of time."

    They question the use of chemotherapy as palliative care; that is, to reduce symptoms for patient with a short time left:

    "Our own study demonstrated that the use of chemotherapy in settings where there is no evidence to establish its benefit in prolonging survival often leads to a worse quality of life rather than to palliation [13]."

    "Our nomenclature would clarify the intent of the chemotherapy to the patient (and family members and health care providers), provide an accurate and less demoralizing language for patients and, by reducing confusion as to the intent of treatment, promote informed decision‐making. In many instances, outcomes produced by chemotherapy have improved dramatically. The time has come for the terms used to describe chemotherapy to reflect the current goals of this type of care more accurately."

    I would add that now (the article is from 2017) in breast cancer treatment, we have to consider how all the targeted and hormonal therapies and local treatments fit in with our terminology. In my own case, at the moment I am on two targeted and one hormonal therapy for stage iv. It is not chemo, but it is "nothing to sneeze at" in terms of the toll it takes on me (though totally worth it to me) and in terms of my hope that it might maybe could be curative in the sense that I could have a normal life span. This seems similar to Jen's definition. I base this hope on the success we are seeing with Her2 therapies these days. My treatment is for Her2 mutated rather than amplified (thus the trial), and I hope to see similarly long-term results. Being NED also gives me hope, but I have been NED twice before. But if serial NED or long-term stable can allow us to live a normal lifespan, that would be the next-best thing to cured. Sondra, I think using the term "chronic intent" is a brilliant idea. Chronic is actually starting to seem accurate for some stage iv patients, namely Her2+ And those (like exbrnxgrl) who as oligo patients have been treated with both local and systemic treatment similar to treatment for early stage, as illimae describes. May better treatments be found so that more and more stage iv bc patients can live a normal lifespan with decent quality of life (however they define it for themselves.)

    A very good idea to discuss what is meant by "curative" and related terms.

  • B-A-P
    B-A-P Member Posts: 409
    edited July 2021
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    My definition would be similar to Illimaes. I was Oligo at Dx and because I had responded extremely well to chemo and had a complete response, they changed me from palliative to curative intent. For me this included getting treatments I wasn't going to be offered earlier. So I was offered my double MX, Radiation and oopherectomy.

    I maintained NED status for close to two years based on scans, before progressing, so that is currently off the table and i'm on "palliative" intent.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021
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    B-A-P wouldn't you prefer another term such as "life-extending intent" or "chronic intent"?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    You are all fabulous! Yes this is definitely a case of imprecise nomenclature and that is exactly why “curative”intent bothered me. If there’s no cure , how can you treat with the intention of achieving one?

  • heidihill
    heidihill Member Posts: 1,856
    edited July 2021
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    In my medical records, my treatment was described as palliative chemotherapy. This would fit the concept of improving quality of life, because at the time I was losing weight, was extremely weak and in pain and unable to put any pressure on my back (so not much sleep). Two chemo cycles later the back pain was gone. My brother who had advanced pancreatic cancer also fit that box of palliative FOLFIRINOX chemo mentioned in the article, but it didn't work for him, not sure it palliated anything.

    I think it's clear if you are dealing with cancer, it's all about intent. My doctors, though, including a second opinion doctor, never mentioned curative. I knew the approach they would take was multi-modal (chemo, radiation, surgery, endocrine therapy). It's possible the chemo was palliative and the rest were curative given that chemo got me to NED. A third opinion doctor I consulted regarding how long to take Zometa was the one who mentioned that my treatment had curative intent. In any case, there are many here who started with one mode of treatment and made the decision depending on the result as to other modes of treatment. Just for expectation management it may be better to frame the decision tree as dynamic.

    Even if there is no cure, this is not equivalent to saying some people are not cured. It's just anybody's guess how they got cured or even if they are cured until they die of something else.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    “Even if there is no cure, this is not equivalent to saying some people are not cured. It's just anybody's guess how they got cured or even if they are cured until they die of something else.

    Interesting perspective. If you can’t prove someone is cured or know how they were cured it would be difficult for me to accept or use the word cured. Yes, theoretically some long term survivors may be cured but without any way to confirm that it’s only theoretical. I’m not trying to be negative but I need more than random long term survival to truly say someone is cured.

    I would love to say I’m cured but I can’t. I can live with NEAD, but not cured until it can be proven.

  • B-A-P
    B-A-P Member Posts: 409
    edited July 2021
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    Shetland,

    I do like " Chronic intent" better to be honest. It has less of a negative connotation that way. I think it's easier mentally when you feel like this is something you live with and manage , but it doesn't equate to death in the near/present moment. Palliative, while it doesn't necessarily mean you're on deaths doorstep, just has such a negative feel to it. It makes me feel worse to hear it. It's a reminder about how crappy this really is and death is likely at some point. To me, sometimes palliative feels like the effort is gone to do everything possible to keep mets at bay, almost as if we are lost causes. I told my MO to not treat me as if I'm dying. I'm young, I can handle a lot .Exbrnxgrl- I think the term " cure" in this world of mbc, is really subjective. For you, you will never label yourself that even if you were to die of something else, and that's okay :) Some might have a different definition .

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    I think my issue is the word cure, even in the mbc world, is not subjective in my mind. The only other meaning, to me, is what we do to some foods or letting adhesives dry. Cure, when it comes to disease is black and white to me. Either you are cured or you’re not. But you will have to forgive me. I was a linguistics major (BA) and am a recently retired teacher. I can get a little nit picky when it comes to language precision.

  • chicagoan
    chicagoan Member Posts: 1,005
    edited July 2021
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    Fascinating discussion. I was certainly not treated with "curative intent"-no surgery, chemo (yet) or radiation except to my spine but here I am going strong almost 5 years later. I have no regrets because it seems for some individuals mastectomies, removal of lymph nodes, radiation and heavy chemo like A/C have long lasting negative effects on both the body and emotions. I guess it is a question of the road not taken for me but I am happy where I am at.

    How do we know if anyone is "cured" of cancer? I assume they use scans/tumor markers for those whose cancer was caught at earlier stages to declare someone cancer free yet we have seen cancer recur in those who thought they were "cured."

    I am an incurable optimist and still hope and pray for a cure for all types of cancer in our lifetime. I think the research work has been amazing and hope they all keep at it.


  • heidihill
    heidihill Member Posts: 1,856
    edited July 2021
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    That's exactly the problem. Is anybody cured? Everyone has cancer cells floating around but the immune system manages for the most part to recognize and eliminate those cells. Cancer cured. Or were those cells in fact never eliminated in some people, only dormant, way before someone is diagnosed? Cancer not cured? Anyone could have dormant cancer cells waiting to attack when your immune system isn't on the lookout for some reason,

  • elderberry
    elderberry Member Posts: 1,067
    edited July 2021
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    To All: This is an interesting topic. I always think "palliative" means we will ease the symptoms until you fall off the twig. "That is the best we can do for you" - "curative intent" sounds like there is a possibility that if all goes well, we could be cured of an incurable disease. It is semantics and we will all respond differently to the words. I can handle not being CURED if I feel good, can live the life I lived before DX and just pop in for the scans and my every three weeks infusion.

    exbrngrl: My DH and I are always yelling at the telly when someone butchers the language. How did "calculus" become the go-to word when they really mean "calculation"? We've given up yelling at "impact" when the speaker means "affect" How did verbs become nouns and nouns verbs? I'll forgive speakers for saying "I can't put up with that" instead of "Up with which I cannot put" I am not a total language cop.

    Like Chicagoan: I hope for cures or better and longer lasting treatments that don't kick our asses along with kicking cancer's ass.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    elderberry,

    Yes, it is definitely a matter of semantics. As a linguist I will offer a bit of an explanation that I hope will make you and your dh feel more at ease with the changes you’ve noted. All language changes over time. It always has and always will unless it ceases to be a spoken language. These changes reflect social and cultural changes (again, necessary for dynamic societies) as well as language related to scientific discovery and inventions, in addition to influences from other languages. We may not like these changes ( I dislike nouns being turned into verbs) but any language that does not change may be doomed as it cannot reflect socio/cultural changes. We no longer use thou and thee yet they were once in common usage. Change? We may not like it but it is inevitable in almost everything particularly living, thriving languages.

    Hoping off my linguistics soapbox now 😊.

  • elderberry
    elderberry Member Posts: 1,067
    edited July 2021
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    exbrngrl: I agree. I don't want the equivalent of "acadamie francaise" - I don't know if you ever saw the mini-series "The Story of English" . It was fascinating. The language is a hodge podge of languages. I can live with impact/affect but calculus is nowhere near the same as "calculation". I guess it makes me crazier than any of the others. My fear is people won't learn or be able to write actual words . A generation of OMG, LOL, R U Home, I H8 U Lordy. Mayhap, there shall be souls to whom the art of writing still exists. Prithee let it be so

  • lillyishere
    lillyishere Member Posts: 775
    edited July 2021
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    Very interesting discussions. I read that 95% of stage IV used to be early stage. I wonder how many Stage IV die of old age-related and not from cancer. I am early stage but I don't consider myself cured for two reasons: first, I continue taking anti-cancer medications, and second, I have appointments with MO (and extra treatments) every 6 months. If early-stagers were considered cured after surgery+chemo+radiation, then would not be necessary for follow-ups and never-ending cancer treatments. I think Stage IV falls in the same "how to proceed" category, if NED lasts longer than natural old-age death, doesn't mean the person is cured, it means cancer cells were kept under control. Oh boy! I can see the glass half empty today.

  • olma61
    olma61 Member Posts: 1,027
    edited July 2021
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    As noted, the main quibble in the article is with the term “palliative” moreso than the term “curative”. I do think they make a very good point in that regard, “life extending” seems more accurate - and more encouraging- than palliative which we patients tend to associate with end of life care.

    I have seen the HER2 targeted therapy I receive referred to as “maintenance” treatment and I believe I’ve also seen “maintenance chemo” in some articles. These seem pretty accurate to me also - maintaining the progress gained since the initial treatment. And “maintaining” the state of being alive! Would be okay with this term as well, although “life extending” has more of an optimistic connotation.

    “Curative” treatment for Stage IV might be better described as “aggressive” treatment for Stage IV, for us linguistic purists : )

    “Aggressive treatment in MBC patients where long term remission is likely to be achieved.”

  • olma61
    olma61 Member Posts: 1,027
    edited July 2021
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    And just to share a thought that came up while thinking about this issue, maybe not 100% related but somewhat related -

    My sarcastic outlook on treatment after the first few months - “They give us these very costly drugs with potentially severe and dangerous side effects, like heart failure or another cancer - and then they act surprised when they work!”

    Like, omg, I feel my tumor shrinking and the doctor is overjoyed. They aren’t overjoyed when antibiotics kill an infection, even a serious one. They expect it

    We’ve come a long way, but we’ve still got a long way to go!

  • sunnidays
    sunnidays Member Posts: 161
    edited July 2021
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    A cure to me implies you dont need any more treatment a bit like taking a course of antibiotics for an infection. To me what seems to be happening is that it will be controlled for longer and longer current treatment will be tweaked to make them more effective, new treatments will come along, there will be more combinations of treatments but it will be for life so if a woman is MBC in her 60s it could be controlled for 20 years and she will live out her natural life more or less and die with it and not of it, however, the side effects may be challenging and could affect overall health. My husband has a good analogy about this if a huge footballer runs into you and knocks you over and you are 25 you would probably jump up and be alright bar the bruising but if this happened to you at 65 or75 it's more likely to cause some injury. For most people going in for treatment in your 80s even if it was keeping you alive would be somewhat of a challenge. Things like distance to the cancer center and the other challenges of old age.

  • moth
    moth Member Posts: 3,293
    edited July 2021
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    LillyIsHere - i dont think your criteria work because as a triple negative Stage 1A I didn't have meds to take when I finished treatment and I wasn't seeing my MO. Just my GP every 6 months and a diagnostic mammogram of regular mammograms. By the criteria of meds and follow up, I had none so would have been in cured category.

    I think enhanced prevention, such as with hormonal therapy and monitoring is different from treatment.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,036
    edited July 2021
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    Lilyishere,

    How many stage IV patients die of other age related causes? Sadly, on the whole very few. You are definitely in the ballpark regarding the fact that 95% of stage IV patients started out at an earlier stage as about 6% of patients are stage IV de novo. Lily, I appreciate your contribution but would like to gently remind you that this is a stage IV only thread and as the mods have requested, please respect that particularly since the discussion is about stage IV and curative intent not lower stages.

    Olma,

    I don’t know what my mo’s intention was 10 years ago but most would not consider my tx aggressive despite the fact that both she and my ro felt that I would live for a long time (their words). So despite lack of aggressive treatment, here I am. My “pasta” was rads and AI’s and it stuck quite well but since this doesn’t happen too often at stage IV I never think of it as a cure. Really, really good luck, but no cure.

  • divinemrsm
    divinemrsm Member Posts: 6,199
    edited July 2021
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    I agree with those who say “cured" means no more disease and no more treatment. Doctors vary in their approach. Some keep an open mind and do not predict timelines, others tell women they've only got a few years...grr. A disability doctor told me since I was six years from diagnosis I did not have mbc because women with mbc only live 3 to 5 years. Said I probably had arthritis.

    This is only my opinion, but I think it's wishful/hopeful thinking on a doctor's part to tell a metastatic cancer patient they will be treated with “curative intent". I don't have a problem with aggressive treatment. I had all the big ones the first year but my onc never spoke of “curative intent". And I do believe a small percentage of stage iv patients are cured altho no one can say who those patients will be or why. But for most, getting the spread of cancer to stay dormant is good enough, even tho it will always need treated.

    I've told the story before: back in the 1970s, my 18 year old brother had testicular cancer that spread thru his body. He had surgery, chemo, radiation and was given a year to live. He is in his 60s now, never a reoccurrence. He used to mention the cancer when asked for his medical history, and the professionals would say, “You're in remission!" He would scoff and say, “Remssion?—no.....cured!" He no longer even brings it up to doctors.

    Here's my confession: I fantasize that even after living with mbc for 10+ years, I will have scans and be declared cancer free! I fantasize that somehow thinking the right thoughts, relieving the right kinds of stress and taking the right kinds of medicine will miraculously dissolve or remove any cancer cells circulating. Hey, why the heck not!