Let's reinvent the mammogram so it isn't effing torture!

Refresh my understanding on the purpose of the study? How will the outcomes be applied/used?

I read the info at the link, but it was pretty general. What’s your take?

They are comparing different methods of monitoring for breast cancer: annual mammograms vs. “individualized recommendations”. I don’t yet know what “individualized recommendations” look like – I assume many people in that group will have fewer mammograms than annually. I don’t know whether some people in that group will have screening more often than annually.

Then they will look – prospectively – at the results of the two groups to determine how they compared, looking at mortality from breast cancer and from all causes, and also looking at how many biopsies, mastectomies, etc. each group has. They will also poll the participants on some schedule about their mental health.

I think they are hoping to find that the “individualized” group has fewer procedures, worries less about their breasts, are less likely to have mastectomies, and has comparable mortality to the “annual” group. But of course they will find whatever they find.

There’s currently even less data on how to screen transwomen for breast cancer than cis women. They may not get enough transwomen the have solid stats on the difference between the screening methods. But even if they just document the incidence of breast cancer among transwomen, I think the study will be valuable.

The study aims to enlist 100K women. That’s plenty to look at both cis and trans women, if they get the participants.

Welp, I’m done getting squished for at least another year, hopefully.

One of the more painful ones yesterday. And so cold. I could really do without ever having another one.

My friend got squished for the first time (she had cervical cancer which means she’s at increased risk for all cancers now.) She said it was painless! There were no squishy plates, just cups for her to rest her boobs in. I have definitely taken note of that clinic. Word of mouth, ladies!

My bold.

I think this should be a completely different study, and that it absolutely should be done.

Having made that clear (I hope), maybe I’m waaaay off base, but ISTM that the essential differences between a body that is born female and a body that is born male and transitions to female (to the extent that surgery and hormones can even bring that about internally) later in life are different enough that you can’t put these two types of bodies in the same study. Especially regarding a disease that is usually hormonally based-- female hormones, that is.

Am I missing something?

[Channeling Liz Lemon] “I want to go to that place…”

I think what you are missing is that a huge study that is hoping to be a landmark in the treatment of a common disease should be one that doctors can look at for as many of their patients as possible. And since a high percentage of trans women take estrogen and grow their own breasts, they should be included in this study.

I mean, you could certainly do some other study that didn’t include them, but it would be less valuable.

If i were designing this study, i would be doing outreach to the trans community to attempt to get enough transwomen enrolled to be able to get good statistics on them. Fwiw, it’s a common statistical method to oversample small subpopulations to improve your overall results. Some of the covid vaccine studies attempted to do this with the elderly and various ethnic minorities, for the same reason.

Note that no one (well, maybe some sloppy reporter, but no scientist) is just going to take the raw data and say, “here’s our answer”, instead they will slice it by age, hormone use, cis/trans, and other relevant characteristics and normalize the results for the population as a whole, as well as likely giving different recommendations to different sub-groups.

My question about the restriction was much more about why they would exclude people assigned female at birth who may identify otherwise now, but still have breasts. They could exclude those taking testosterone if they want to avoid that as a confounding factor. There are plenty who don’t. Is it because they want their messaging to apply to women specifically?

Dunno. I don’t think I would have done that if I had designed the study. I’d probably have excluded transmen who had their breasts surgically removed, and maybe those on testosterone, as well. But that still leaves some transmen who have female breasts exposed to typically female hormones, and I’d have chosen to include those people.

That being said, those people will probably be well served by following guidelines for cis women, so it’s not as serious a gap as leaving out transwomen would have been.

Consider that “exclude” was a poster’s conclusion. Also, consider that they would want to identify any potentially confounding genetic factors as simply as possible.

For me it isn’t about a gap in the data, it’s about excluding people with breasts and the same hormones as ciswomen on what seems to me an inexplicable basis. I hope they do have a basis, but I can’t fathom it. It is inexplicable to me why they would screen out not just transmen, but also those who identify as nonbinary.

As far as data gaps go, I think it could be particularly interesting to see if an “individualized” approach worked better for folks who might be rubbed the wrong way by recommendations for women generally.

They specifically say the study is open to people who identify as female, don’t they?

What genetic factors are you referring to? Are you supposing there are ones that relate to transmen and nonbinary AFAB folks, but not ones that relate to transwomen?

I think I may have my terminology mixed up. They are including transwomen (women after transition) right? Those subjects would be more likely to have a Y chromosome.

I am likely just confused.

Probably not.

Men get breast cancer too, although it’s less common. I think the differences between breast cancer rates of cis men, trans men, cis women, and trans women might be illuminating and informative.

But men don’t generally get screened for breast cancer at all, unless they have some particular risk factor.

… and?

It’s not important to consider men who are at risk for breast cancer?

As I said, the information would be useful. That doesn’t mean this particular study has to include men - studies like this are free to pick and choose who they do and don’t include (and others are also free to criticize) - but it rubs me the wrong way to dismiss breast cancer in men as “it’s rare”.

My mom had breast cancer and mammograms saved her life.

She ultimately had a double mastectomy (one each, years apart).

IIRC she had that test done twice a year when she was older. She said it was not pleasant but she was my mom so didn’t go into a lot of detail.

Do we know if no one is bothering to find another means to test for this? They invented the painful version and just left it at that? (I really do not know.)

Anecdotal but the women I have known (other than my mom) who have talked to me about this have found the test to be unpleasant but not awful. Squished boob for a few moments which they did not like at all but was tolerable. There are loads of medical procedures that are uncomfortable or worse.

The question is can there be a better way? A Star Trek-like wand they wave at you that tells them all the need to know?

I agree it would be useful to better understand breast cancer in men. But I don’t think a study aimed at “what’s the best screening regimen” is the ideal place to examine that. And if the only information you are looking for is “how many men get breast cancer” I’m pretty sure that information is already being gathered. A lot of diseases are routinely reported to the CDC (i think it’s the CDC) along with very basic information (age and sex) and I’m pretty sure breast cancer is one of those.

Here, this says that 1/100 breast cancers in the US is found in men:

Unless your suggestion is that men should be regularly screened for breast cancer?

There are lots of things that could be screened for that aren’t. I know some people have advocated getting a full body cat scan/MRI from time to time to look for tumors before they produce symptoms. It’s controversial, and not just because it’s expensive. It’s likely to lead to over-treatment.

Anecdote time:
My best friend in high school was diagnosed with Hodgkin’s disease in the late 80s, and had a lot of scans as a result. They found an adrenal tumor. At the time, adrenal tumors had an extremely high risk of death, and her oncology team wanted to treat it aggressively. My father, who was a doctor, but not an oncologist, convinced her to have the tumor surgically removed but do nothing more. He said, “yes, adrenal cancers have historically been really bad news, but historically they’ve never been found before they advance to the point of causing problems. There’s growing evidence that cancers that are found accidentally, while scanning for other reasons, are a lot less dangerous. And the treatment is really rough on your body.” Decades later, he was right, she didn’t need treatment for that tumor. And the treatment might well have killed her by now. An acquaintance recently died of heart disease caused by the treatment of her breast cancer 15 years ago. Cancer treatment is not benign.

Now, you might say, sure, if we were all scanned we could treat all the resulting lumps and bumps conservatively. We could just watch them, or simply remove them and do no more. And maybe that IS what we’d do if MRIs and cat scans were nearly free. But some of us would be nervous enough to demand more aggressive treatment. And lots of doctors would be happy to have that revenue source, and support those decisions. It would lead to a lot more treatment. And maybe that treatment would do more harm than good.

Anyway, i assume that the reason men aren’t routinely screened for breast cancer is that it isn’t common enough in men to be considered worth the cost and the risk of false positives. But maybe it’s just bias.

I guess if men were advised to get regular mammograms we’d almost certainly have a less painful way of doing that.

But a study would need 100 times as many men to get comparably valid results regarding the best test regimen. That’s probably not feasible.

There’s the issue of what would be useful to learn;
The issue of what gets funded in general;
The issue of what this particular study was funded to study.

Honestly, I do not think that is either cost-effective nor in the best interests of men in general due to possibility of over-diagnosis and over-treatment.

It would be helpful to know which men might benefit from regular screenings, and how often that should be done because some men are at relatively higher risk than the majority.

Currently, the treatment of breast cancer in men is based on what works for women - the flip of the usual circumstances in medicine. A cursory bit of searching on male breast cancer while writing this post tells me that while ductal carcinoma is the most common in men (as it is in women), and inflammatory breast cancer and Paget’s disease have been found in men apparently there has not been an instance of lobular breast cancer recorded in men. Although lumps in male breasts are easier to find (essentially, less breast to look through/feel) tumors are usually found at a later stage in men (in part due ot lack of awareness that breast cancer can occur in men) and maybe they can start to metastasize quicker. We don’t know. As it is a rare disease (for men) randomized trials in men are, apparently, not being done. I’m not sure we really know which men are at risk, and how much, and how best to screen/approach this disease in men.

This may also have implications for trans men. I’m sure we know even less about breast cancer in trans men although, presumably they have at least as much risk as cis men, and likely more due to hormonal influence. Certainly, “top” surgery will not completely eliminate the risk as it does not completely remove all breast tissue.

Again, I don’t think we really know the actual risks in trans women. This is probably a higher priority than either cis or trans men but I expect no one has really studied this. Presumably they’re at higher risk than men - are they at greater or less risk than cis women? Does it matter at what age they transitioned?

And, finally, for everyone I wish we could definitively say which tumors/cancers/conditions actually need aggressive treatment to either put into remission or extend meaningful life, which only require monitoring (and the schedule of that monitoring), and which we really can’t do anything for and for which aggressive treatment only prolongs sickness and suffering so patients can make the decisions that are best for them.

Yeah, I know - why don’t I ask for world peace and a pony, too. Hey, I’m an idealist. I also understand that there is only so much funding to go around and there are good arguments for funding that which will benefit the greatest number of people. Right now, that’s women.

If it were a study of how to treat breast cancer it would make sense to include men. (And attempt to oversample them, to get enough data to be meaningful.) But this is a study about monitoring for breast cancer, specifically, how often to have mammograms. I don’t see much point in including men in this study.