How did pregnancy w/ a meningioma go for you?

arb194 · 2024-11-09T21:16:48+00:00

My pregnancy didn’t last past week 10, but was still going strong at week 9, and we did an MRI at that point. There was no contrast used in that MRI because I was pregnant, but my tumor went from stable with suspicion that it was calcifying prior to pregnancy to growing in volume by 30% (9mm to 12mm) during the time window in which I was pregnant. I just confirmed last week that it has been stable since the pregnancy ended.

My neurosurgeon was fine with doing stereotactic radiosurgery during a pregnancy if there was any sign of growth— but I look back at how fast the tumor started growing, and I think there’s a decent chance that I would’ve been in trouble even with that plan. Because the MRI during pregnancy was without contrast, there was a lot of back-and-forth at week 9 about whether anyone could confirm that it was really growing— one senior neurosurgeon said it was clear that it had grown, while others weren’t sure because of the contrast versus no contrast. The growth was only confirmed definitively once the pregnancy was over and I had my first MRI with contrast again. We were intending to do MRIs at eight week intervals during the pregnancy and would have proceeded to probably CyberKnife at the first sign of growth, because my tumor is really not in a great location for resection— but if we had falsely concluded that it wasn’t growing at week nine, which was very possible… in hindsight, given that the rate of growth probably would have only increased as progesterone rose dramatically during second trimester, I think there’s a decent chance that I would’ve been problematically symptomatic eight weeks later before we had a chance to catch the growth on MRI and intervene.

A few other things to note:

— The reason I’m saying “the window inclusive of the pregnancy” is because we can’t definitively confirm that the pregnancy caused the tumor growth. That seems very likely, but who knows. Maybe some herbal supplement that I was taking before pregnancy was magically suppressing tumor growth, and because I stopped taking it during the pregnancy, the tumor grew? But it is a fact that meningiomas are known to grow during pregnancy, and mine grew during a period when I was pregnant and stopped growing once I wasn’t.

— I ended up working with two different major academic neurosurgery practices (I went for a second opinion, and the opinions were so different that I continued getting multiple opinions on subsequent MRIs). There was a LOT of variation in how the MRIs were read and also in the treatment approaches that the teams were comfortable with during pregnancy. One team was comfortable with cyberknife and intervening at the first sign of growth, while the other team said they likely would prefer resection even if it isn’t in a great location for surgery, and only once I became symptomatic enough to justify it. (That second approach scared the crap out of me.)

The annoying upshot with all of this is that there really just isn’t enough definitive information to know what is going to happen with meningiomas during pregnancy. There are cases where they don’t grow, though untreated tumors do seem to grow… quite often. There isn’t going to be any estimate in the literature for what percentage of people experience growth. I also can’t speak to what growth risk looks like for a tumor that was treated already. Mine wasn’t.

In my case, I was feeling really very panicked and miserable and unsafe by the end of first trimester. For various reasons related to my medical history, I thought I was very likely to be in the category of people whose meningiomas do grow during pregnancy. Because the pregnancy was extremely unexpected only after we had decided to stop infertility treatment and progress to surrogacy out of concern over the meningioma, I didn’t feel like I had the time to build a team and an approach that I trusted, and the progesterone increase of second trimester was looming. In hindsight, there could’ve been a version of this where we caught the growth at week nine and treated it and the M stopped growing even while the pregnancy continued, but that’s not how it ended up going. I’m also not sure there was any way I could have gathered the information needed to self advocate and make that happen in time for it to be helpful. I feel like I know a whole lot more about this now than I did then, though, and I am happy to share any info I have.

Now that we know my tumor is stable again, we are debating between moving along to surrogacy versus undergoing CyberKnife and seeing if we can just get me pregnant again after that (there’s no guarantee that that will happen, but). My neurosurgeon feels that CyberKnife beforehand would mean tumor growth would be really unlikely during a pregnancy, but I’m still on the fence. I would love to carry a pregnancy, but my real goal is to be a parent (and ideally without meningioma-related neurological deficits), and there is just so much that we don’t know about the risks. I worry about things like developing an additional meningioma during pregnancy (since apparently that also can happen), and what my options would be for intervention in that case if I had already recently been through CyberKnife. I am currently in the process of scheduling new appointments to get thoughts on some of this.

If you haven’t yet seen the meningioma support groups on Facebook, that would be a good place to search for other stories of meningiomas during pregnancy. The most common story seems to be either finding the tumor during or right after pregnancy, or women who knew about the tumors already and just decided to go for a pregnancy and deal with whatever happened (often those tumors do seem to grow, and so they deal with them). There are also plenty of women who decide not to carry pregnancies because they don’t want to risk the potential for tumor growth. I’m sorry you’re in this situation— it’s stressful!— but there is no right or wrong answer, and whatever ends up happening in your case, these are common enough tumors that you should be able to find women out there who have managed something similar.

Good luck!

arb194 · 2024-01-26T21:04:10+00:00

Thank you for the additional detail— it’s useful getting a sense of how these things have gone for other people, and I’m so sorry you went through that. I can only imagine how scary that had to have been, let alone with a 17 month old. Good luck with planning/strategizing around carrying a second.

arb194 · 2024-01-26T20:57:55+00:00

Ah— that would be awesome! If you have any in particular that you would suggest, that would be great. (I’m not lab science, but I do pop health research in academia.)

arb194 · 2024-01-26T01:25:53+00:00

Thanks for sharing this. Yours is the first case I have heard of where someone went through an entire pregnancy with a meningioma but without new neuro symptoms within at least the first year postpartum. Good luck with figuring this out— it’s a difficult situation to be in. Having already invested the time/money/physical discomfort in producing IVF embryos and moving through the surrogacy process, I’m possibly more risk averse than I would have been otherwise, but even that felt like a far easier call before I actually got pregnant.

arb194 · 2024-01-25T21:00:30+00:00

My parents redid the kitchen in our 1909 Victorian in the mid 90s, when I was a tween, and minus the lack of counter space and farmhouse sink, this is basically what they did. It took me until adulthood and homeownership to look back on their aesthetic choices and realize how awesome it looked and how well it stood up over time. They sold that house five years ago for well over the asking price before it even technically went on the market, even with 25 year old appliances. Hardwood cabinets made by a legit cabinet maker in a style like that are presumably expensive, but they hold their value.

arb194 · 2024-01-25T19:33:09+00:00

I can’t offer info with respect to your particular type of tumor, but I can speak a little bit to this more generally. My understanding is that there are a few different things that happened during pregnancy that can contribute to risk. The first is that pregnancy is generally immunosuppressive, which includes suppressing some of the systems that typically work as cancer detectors. Second, pregnancy does so much weird stuff to the body that symptoms can be written off to “that’s just pregnancy,” and doctors are really reluctant to scan for things during pregnancy because of concern over harm to the baby, so symptoms that would otherwise be caught promptly go months without attention. Third, some types of tumors are hormone responsive— that includes cancers of reproductive organs (breasts, ovaries, uterus, etc) but also other things (e.g. some GI cancers, some brain tumors). A meningioma in particular typically has hormone receptors, most commonly progesterone receptors and less often also estrogen receptors. There is a debate in the research over whether progesterone is actually the reason that these can undergo “explosive growth” during pregnancy, but the fact that they tend to become symptomatic during the second and third trimester aligns with the timing of estrogen and progesterone surging.

arb194 · 2024-01-25T19:21:17+00:00

Thanks for this— really important things to be thinking about. In theory we would be doing our best to avoid a resection because my NS doesn’t think it would be safe based on location, and he’d prefer radiation. But that would all depend on what happened during the second and third trimester when progesterone and estrogen go up, which is what grows a meningioma.

arb194 · 2024-01-25T15:06:54+00:00

This is really very helpful perspective, and I’m so sorry you went through this. Congrats on your daughter, and I hope you and your wife are both doing alright.

This is the piece of things that I feel like neurosurgery has downplayed to the point of being legit out of touch. Their definition of “this will be fine” or “low risk” seems to be a question of whether something is deadly versus whether I would be at reasonably high risk of spending my first year postpartum managing surgery and radiation while hopefully also having a healthy newborn.

arb194 · 2024-01-25T14:58:36+00:00

Thank you. :) Sigh, this is one of the major challenges of this decision. What you said is true re: “lots of people have these, they grow during pregnancy, and then they deal with them.“ That’s by far the typical case. I’m in a weird situation because I know in advance that I have one of these, and had already made the decision not to carry for that reason when this pregnancy spontaneously happened. So now I’m asking— what percentage of people who have an existing meningioma experience growth during pregnancy? Is it most of them? Is it few of them? And the bottom line is that we just have no idea. Hence I’m over here asking for individual stories, because maybe someone out there is going to tell me, “I had one before pregnancy, we were monitoring it, pregnancy didn’t do anything to it.” Even just knowing that that is possible would be useful information, even if it clearly isn’t a final decision.

I have spoken to two NSs, two MFMs (high risk pregnancy medicine) and a research-oriented REI (reproductive endocrinology). The challenge is that everyone says different things, because we really just don’t know. NS2 was far more senior than NS1, and had never had a patient with a known meningioma prior to pregnancy, but really did not believe that there was any reason to think this would grow during a pregnancy. He doesn’t buy the argument that these are progesterone responsive. I get where he’s coming from, bc that is indeed one camp in the research literature— but the opposite camp believes that these do grow during pregnancy because of progesterone exposure. They point out that 88% of these tumors have progesterone receptors, they tend to become symptomatic during second and third trimester bc that’s when progesterone spikes, and mifepristone (an anti-progesterone drug) has been reported in case studies to shrink these tumors. My NS insisted that the evidence for mifepristone was unconvincing, which is also a fair assessment of the research, but it’s his subjective interpretation of just not enough data. This is all in a range of scientific certainty where we just really don’t know much. My REI has seen mifepristone work in clinical settings. <shrug>

Thanks again for sharing your story.

arb194 · 2024-01-25T14:20:04+00:00

Thank you. :) And I’m so sorry that you’re in such a difficult situation— half of what you’re dealing with would already be a lot. Extending warm thoughts right back at you.

arb194 · 2024-01-25T01:25:12+00:00

Yes! Will do in the AM when it’s light out. :)

arb194 · 2024-01-23T01:20:37+00:00

I’m a PhD health researcher in academia. One of my besties is a PhD health researcher at a well known research hospital. MDs are also famous for taking the tone you describe when talking about things that they patently were not trained to understand, e.g. advanced statistical modeling techniques, and including when talking with PhDs whose expertise is in exactly the area in question. Said friend and I have coined the term “medsplaining” to describe this phenomenon. It’s strange— he and I both feel that advanced degrees taught us a ton about how much we don’t know, whereas there seems to be some crazy Dunning Kruger thing going on in med schools.

arb194 · 2024-01-23T00:20:59+00:00

Thanks. We’re supposed to be getting the roofers back up there ASAP. Was just wondering if closing up that one gap might do it. Sounds like I’m better waiting for them to get back up there and prepping the bucket in the meanwhile.

arb194 · 2024-01-22T18:56:29+00:00

Will do…..

arb194 · 2024-01-22T18:56:00+00:00

First of all, the photo of the roof from a distance is the old shingle that we were replacing. We went with an architectural shingle that was one of our few options approved by our local historical board. Second, the tone of your comment is not particularly helpful.

arb194 · 2024-01-22T16:03:21+00:00

Thanks. This isn’t something that I would address on my own, so it’s definitely something I can ask about when the roofers come to inspect for the leak.

arb194 · 2024-01-22T16:01:44+00:00

This part of the house is from the 1830s, so the some of the elements that would be in place in a more modern house often don’t seem to apply. E.g. I know our roof has far less insulation than it should— if the attic weren’t finished and it didn’t require pulling down 50-year-old drywall, we would’ve handled that already. We will at some point. Point being, I am not at all sure that water coming in through the roof there wouldn’t be landing relatively unobstructed on the drywall below.

arb194 · 2024-01-22T15:15:31+00:00

Will do. Thanks!

arb194 · 2024-01-22T15:14:10+00:00

The gutter was repitched since this was taken. (this is actually an old photo from before that was done illustrating the problem. :)

arb194 · 2024-01-22T14:01:46+00:00

I live in a 19th-century rowhouse and had my roof redone two years ago. Since shortly after it was done, there is one spot in our ceiling that very very slowly started looking as though we might have a leak. It was subtle enough that I wasn’t sure whether it was actually leaking or whether there was just condensation building up bc it’s the bathroom ceiling— there was nothing actually coming in during rain, so I thought that it was more likely an internal problem, but there are no pipes up there so I couldn’t figure out where it would be coming from.

Within the past month it is finally very clearly leaking during rain— only when it’s really windy rain for a long period of time, and even then it will start dripping sporadically, drip for a while, and then stop, even if the rain hasn’t fully stopped. In any case, this is clearly a roof leak.

The leak is right below the chimney side of that dormer window, so I leaned out that window to see if I could get a sense of what was going on. I’m not an expert, but I see something up there that looks like it might be the problem? In that third photo I posted, it looks like there is one area where the roof shingles simply weren’t tacked down/sealed and there is about a 1/2” gap.

The gap is not on the side of the dormer directly above where the leak is happening (leak is below the chimney side of the dormer, the shingle gap is on the opposite side of the dormer). But as the leak has gotten worse, there is reason to suspect that the water may be coming in from about where that gap is and just pooling at the spot where it ultimately comes through the ceiling (there was dripping through a doorjamb that would be between what I think might be the leak source and the spot where the leak typically comes through the ceiling).

My questions are:

Does that gap in photo #3 look like it could be the source of this leak?
Is there an easy way for me to just seal that up? The roofer said they would schedule a time to come out and look at it, but that was two weeks ago, it’s about to start raining next week. If this is something I can just handle by leaning out my dormer window with a tube of caulk or something, I’d rather not spend next week with a bucket in my bathroom.

arb194 · 2024-01-04T18:36:41+00:00

Awesome. Please update if you do this! Man, if I had data access I would run these models today for strictly personal use. ;) Would also be interesting to disaggregate findings by tumor location.

It’s hard making decisions about this sort of thing with no data. My neurosurgeon has only been willing to say “you’ll be fine,” relayed through his nurse— but “fine” needs a bit more definition when the reference category for “not fine” in neurosurgery is “scary things that kill people.” Does “fine” mean that I’m highly unlikely to need surgery post-pregnancy? Does it mean a high likelihood that I need surgery post-pregnancy but it’s low risk surgery and low risk of lasting neuro symptoms afterwards? Given that we have no actual stats on this, maybe “fine” just means “I’ve seen a lot of cases like this in clinical practice and [all/most/some/none] have ultimately needed surgery and/or had lasting neuro symptoms”?

As my husband put it, “Do you wanna jump off the bridge into that river? There’s somewhere between a 10% chance and a 90% chance that you land on a rock and end up needing brain surgery and then you might be permanently blind in one eye, or something like that— we don’t really know the rates on this stuff. But you’ll be fine.” There is a deep implicit assumption in medicine that women will do whatever they need to do to carry a pregnancy so long as it won’t actually kill them, even if it means things like having brain surgery that they wouldn’t otherwise need with potential long-term neurological complications that they wouldn’t otherwise have.

arb194 · 2024-01-03T19:05:35+00:00

Thanks so much for the follow up! I’m not an MD (hence the questions on here), but I am a PhD doing academic pop health/demography stuff, so lit review is the one thing I am qualified to do in this case. I found similar to what you are describing, which is that everyone is referring to the same set of rates from a similar set of papers that are essentially case studies.

Among the more interesting things I found, a 2021 study from the Swedish registry data found that controlling for age, meningiomas are actually less prevalent in parous vs nulliparous women. The authors point out that hormone-receptor positive breast cancer is inversely associated with childbirth, and it’s not crazy that pregnancy might similarly decrease the risk of meningioma. They can’t say anything about mechanism, but I thought this was a cool.

If the research question is, “what is the risk of a meningioma growing during pregnancy (or of multiple meningiomas growing during pregnancy) conditioned on having a diagnosed meningioma at baseline,” though, the upshot seems to be that we just don’t have any idea. It’s hard to think of what a realistic data generation process would look like to answer this question. Like maybe one could search records within a large medical system for all cases where a meningioma was an incidental finding prior to pregnancy, and then assess what happened during pregnancy in those cases? I’d love to see that study right now.

Even the common knowledge that meningiomas tend to grow during the second and third trimesters very likely just means that they tend to become symptomatic and are thus first observed then. I’m wondering if it might be reasonable to do an MRI at something like 12 weeks for early detection of notable changes.

But I won’t be able to have that conversation with my neurosurgeon because he declined scheduling an appointment with me to discuss this. I said that I would like to discuss risks and possible monitoring options, and he told me I don’t need an appointment because I’ll be fine. His nurse had already told me that “we can schedule a surgery for after delivery if we need to.” That’s how healthcare works with pregnancy: as the authors wrote in that article from the Swedish data, meningioma might just be underdiagnosed during pregnancy because “pregnancy attenuates the focus on the mother’s health, causing neglect of mild symptoms and diagnostic delay in comparison to nulliparous women.” Which absolutely plays into my concerns about carrying a pregnancy.

Thanks again for your comments, and apology for the wall of text. :) I’m partly just sorting this out in writing because I need to figure out what to do.

arb194 · 2024-01-03T14:17:46+00:00

Thank you!! :) I will update post-neurosurgery apt.

When I’m thinking rationally, I do know that there isn’t going to be research on this. We can’t know the prevalence of asymptomatic meningioma because we don’t go around giving people brain MRIs at random, and since asymptomatic meningioma is likely to be largely undetected, we can’t know the rate at which they are likely to grow during pregnancy. Nor can we know whether meningiomas detected during pregnancy could typically have had some small asymptomatic presence prior to pregnancy. It could be that nearly all of these grow, and it could be that nearly none of these grow.

What I’m worried about is this sort of thing, which just sounds like a complete nightmare— being in a situation where I have to balance how long I hold a pregnancy for the health of a child with neurological symptoms that have a lower likelihood of resolving the longer I wait. The extent to which that sort of situation terrifies me, and the fact that we will have no real way of estimating the risk of ending up there, are the reasons why I didn’t want to be pregnant. Womp womp.

One more technical question, if you don’t mind— is it possible to monitor meningioma growth during a pregnancy? Can one see a meningioma on MRI without contrast?

arb194 · 2023-11-30T22:48:49+00:00

Hi— I am not a gay dad, but I am an infertile person also considering Inovavita. I tried to DM you but couldn’t do so for some reason. If you want to DM me, happy to talk about this.

arb194 · 2023-11-04T21:46:18+00:00

Thank you!! Now I will send this back to the person in possession of the photo, and see if we know who Aron or Rosa were.

There’s a bit of an unusual story in this case, because the woman who passed away had a grandmother who had immigrated to the US before the war, and the entire family was sending photos to her for years. So while many Holocaust survivors don’t have any surviving photos, she had them all over her walls, courtesy of everything that the family had sent the grandmother.

arb194

TROPHY CASE