A question I have often wondered abou... - SHARE Metastatic ...

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A question I have often wondered about for myself and as of today science has an answer.

Aimee95 profile image
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Aimee95 profile image
Aimee95
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Barbteeth profile image
Barbteeth

Hi there

I’ve always thought that

Barb xx

Hmmm....interesting article. And clearly a credible source.

**I just wrote, then read, so I'll warn you...It's a bit of a rant**

I also think a lot about the "science", although I'm not very adept at navigating that info, but I am pretty good with "data" and data analytics. And I'm not 100% bought in to their generalized conclusion.

Beneath the averages, there are almost certainly identifiable/actionable pockets/subsets for whom surgery/radiation prolonged life who were offset in the averages by the others for whom it shortened life.

Needless to say, surgery and radiation come with some adverse effects, which will affect some groups disproportionately. E.g. older, less fit women.

For radiation, as an example, from what I understand the location of the tumor can determine risk vs. benefit (if the tumor is in a large/central bone, e.g. pelvis/sacrum, the bone's reduced ability to produce WBC's after radiation affects not only immune response but also the patient's ability to remain on some treatments (e.g. Ibrance)). So location of tumor to be radiated matters.

So young, more fit women could very well have benefited from surgery. Where is this in the conclusion?

Other women, with a single tumor in a rib (vs. pelvis) probably benefited from radiation. Did they break that out?

The sample of several hundred was probably not large enough to find meaningful correlations, so we all throw our hands up and say "It doesn't make a difference".

This actually pisses me off!

When I was first diagnosed and many times since, I've had the admittedly fleeting thought that "someone" needs to dump all of the data from the millions of cancer patients into one data set and run some freaking analytics. In addition to basic cancer-related medical info (diagnoses, dates, treatments, type, etc, etc.), "they" should include other medical/bio info (e.g. BMI, blood type, blood sugar level, etc.); plus lifestyle info (diet, exercise, supplements, usage of alternative treatments, etc., ); and so on.

The overall averages will be the same, but with enough data, "they" could find pockets/identify subsets to link different characteristics to different outcomes. I have no doubt there are meaningful subsets. We throw our hands up about all sorts of things....e.g. diet. What seems to work for some doesn't work for others. So it's unknown. But it's not unknowable.

And I recognize that I might sound presumptuous questioning the conclusions of the top researchers in the world but I'll say this: The ad that *you* are pushed online or the piece of mail promoting a credit card that *you* received in your mailbox are the result of datasets of millions and a level of sophistication in analytics that is generations better than what these docs use. Their data analytics are worse than what was industry standard when I started in the industry 35 years ago. And there's no good reason for that. It's about silo-ed data sets (no one wants to really share...their grants might be at risk) and lack of overall funding. When Obama/Biden declared the "Cancer Moonshot" or whatever, data collection and analysis were going to be a big part of that. I was heartened by this and more recently deflated.

Anyway, that's my rant!! I hope you didn't waste your precious time reading (!), but I feel better... :)

Be well,

Lynn

Staysha profile image
Staysha in reply to

Thank you for that Lynn. I for one completely agree with you.

👍🏻 Stacy

in reply to Staysha

Thanks, Staysha...It sometimes makes me crazy, so if I seem crazy, that's real (!), but I have an upcoming meeting with the head of research at an "NCI Comprehensive Cancer Center" and I just added this topic to my topic list in Apple Notes. I am THAT obnoxious! :) Your concurrence helped me become that obnoxious, so thank you :) .

Staysha profile image
Staysha in reply to

Guess I’m one of those that do not matter. Stage 4 from the start in Nov 2019. Since then I’ve had a mastectomy and sbrt on a lung met. So there you go.

That article makes me mad cause if I want to do all that then I should have that option even at Stage 4.

That’s just a piece of my rant.

🤪

in reply to Staysha

Staysha! Exactly!!! Based on the report, you probably would have had neither! But if I were you, I'd feel better after having the surgery and SBRT! :) Good thing the study came out afterwards because I think these might determine doc's/insurance company's stances. I actually researched the source of the study referenced to see if it was likely to be influenced by the insurance industry. A shallow-dive, for sure, but appears okay? I'm always skeptical....e.g. lobbyists!

Glad you're getting the aggressive treatment you deserve!

Staysha profile image
Staysha in reply to

Exactly!!

Typo... I was diagnosed nov 2018 not 19. My dr told me Friday that we would keep having more sbrt in our back pocket in case I need it down the road.

Thank you for putting exactly what I am thinking in writing.

Stacy

diamags profile image
diamags in reply to

Lynn, I think what they're talking about in this study is surgery of the original tumor in the breast followed by breast radiation. I get my treatment at Northwestern, where one of the authors, Dr. Khan, is from. It's not that they don't believe in any treatment after the stage IV diagnosis, it's just that it won't stop the disease from spreading. For instance, I have a bone met in my backbone. Yes, we radiated that to stop the pain, but no, we don't believe it will extend my life. In otherwords, it's not curative. If I were to develop another breast tumor, we'd leave it alone. No surgery, no radiation on it. With that said, the other therapies that I take, will extend survival and yes, we'll continue with those.

in reply to diamags

Thanks, diamags...I think, but am not certain, that I understand what you are saying, Forgive me; my brain is mush.

The way that I read the study was that surgery/rads *on average* did not prolong life for stage IV patients. Needless to say the end result is the same, i.e. death, but the question is about duration of life.

My issue was with what seemed to be an only top level view...on average. I don't discredit averages (e.g. many people note "well , these are just averages", and while it's a bit of a hands thrown up in the air response, no one can disagree with that. Averages ARE averages! :) But to make a conclusive sounding declaration based on overall averages seems to ignore possibly (probably) meaningful differences in the OS of easily identified sub-groups of people who receive these treatments.

Like, let's look at adverse effects of surgery...e.g. death...for women with heart problems, obesity, whatever. For them, the risk of surgery might be greater than the benefit of having surgery. If "they" would "cut" the data in half...by young/healthy women vs. older/less healthy women...the results would almost certainly fall on either side of the average.

So, especially with greater numbers of participants, could the study show that "for older/less fit women surgery reduced OS" but "for younger, more fit women surgery increased OS"?

Maybe. Maybe probably. But the study stated conclusions that sounded very authoritative, And this could easily drive insurance companies' stances toward payment.

But would greater numbers/a deeper dive reveal actionable differences?

I would be comforted/more convinced if I saw anything other than gross averages with a sample of a few hundred. If they ran the study with, say, twice as many people, they could get the same statistical significance on half-sized sub-groups. But for some reason the studies we see are with a few dozen or hundred people. I would hate for younger/more fit women, e.g., be denied potentially life-extending treatment based on averages that included other people.

My two-cents. Thanks!

Lynn

Bubbles001 profile image
Bubbles001

I was diagnosed oligometestatic from the get go and underwent extra radiation to my sternum and chest, surgery, and chemotherapy plus hormonal therapy. I was glad then to have all the treatment but the long term side effects are significant. I actually think the treatment did little to extend my overall survival. Emotionally, it’s hard to hear that radiation and surgery will not extend overall survival for MBC patients, but there are many studies saying this.

hurricaneheather profile image
hurricaneheather

thank you for sharing this phase 3 trial research. though de novo does not pertain to me, i like to be informed of quality research, especially phase 3 or 4, for others.

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