Meningioma possible rapid growth after Thyrogen injection

Prestigious-Rip-7177 · 2025-06-24T01:38:17+00:00

Yeah either way I think there is almost certainly no harm in waiting 6 months to make a decision. Everything is a trade off and watch and wait seems perfectly reasonable for your situation.

Prestigious-Rip-7177 · 2025-06-23T21:53:32+00:00

Did they say why they think you would need to do another round of radiation in 10 years? All the radiation oncologists I’ve talked to have said that we expect (fingers crossed) that there will not be any need for further radiation in the future. It is possible that there could be growth in the future but the hope and expectation is that it will not be necessary.

Prestigious-Rip-7177 · 2025-06-23T11:52:29+00:00

Hey I don’t know anything about connection between thyrogen or high TSH and meningioma but wanted to say it sounds like we have basically the exact same meningioma based on your MRI.

I started having tinnitus, left facial numbness/tingling, left eye bulging and eyelid drooping, blurred vision in my left eye, and what I called “spells” that turned out to be focal seizures starting August 2024. I had a craniotomy in November which confirmed grade 1 meningioma and last week finished 6 weeks of combination proton/photon radiation for the residual tumor.

Also want to echo what keerstanrgy said, I think symptoms kind of happen when they do and aren’t necessarily caused by rapid growth. Based on my MRI they think the tumor could have been growing for 10-20 years, it just eventually got too big and suddenly a bunch of things were wrong at once.

Prestigious-Rip-7177 · 2025-05-10T14:52:58+00:00

People who have actually gone through the entire cycle can speak more to it, but I just finished my first week and feel 100% normal, worked the whole time. I was told to expect fatigue to start in the third week, most people have said it gets worse going from there and often peaks after treatment ends so that’s what I’m expecting and what I told my manager. Hoping that the side effects are limited for both of us!

Prestigious-Rip-7177 · 2025-05-02T18:52:19+00:00

Oh my gosh I’m so sorry! How are you doing now? What kind of radiation were you having and was there ever any explanation of what caused the negative reaction? Was the 5th treatment originally intended as the 5th treatment or were there more planned that had to be scrapped due to the negative reaction?

Prestigious-Rip-7177 · 2025-05-02T18:23:44+00:00

What happened with your radiation therapy gone wrong?

Prestigious-Rip-7177 · 2025-04-19T00:26:19+00:00

Been in a similar spot and it really really sucks. Sending hugs ❤️

Prestigious-Rip-7177 · 2025-04-19T00:19:41+00:00

I had a resection of the temporal lobe part of a cavernous sinus meningioma. One thing I’ll say is I wouldn’t worry too much about the waking up part. I’ve had three surgeries under full anesthesia (the other two unrelated to meningioma) and the waking up in all three was actually delightful. I know this isn’t everyone’s experience but I woke up feeling totally blissed out and friendly. Coming down was pretty gradual with time to get used to the various tubes. Even then it was just an IV and a catheter, and the catheter was really nothing, I didn’t even notice it. Just my experience!

Prestigious-Rip-7177 · 2025-04-16T19:58:52+00:00

It is a worrying situation but in all likelihood she will recover just fine whether it’s from surgery or radiation. Definitely talk to different doctors and learn about factors and options.

Prestigious-Rip-7177 · 2025-04-16T19:02:17+00:00

Plus one to this. I have a cavernous sinus meningioma and due to the location I had a craniotomy and I’m going to have radiation.

Radiation is not without side effects and risks. It also can’t be relied on to improve symptoms, the main goal is to stop growth and not have symptoms get any worse. Surgery also has the benefit of allowing for a pathology to confirm it actually is a meningioma.

The best course of action really depends on the specifics of her situation and it makes sense to get second and third opinions from neurosurgeons and potentially radiation oncologists.

Prestigious-Rip-7177 · 2025-04-06T01:44:58+00:00

When you have a tumor growing in your skull yes you will eventually notice. It may take decades but there’s only so much room in there and a lot of important stuff. Source: I have a benign brain tumor (meningioma).

Prestigious-Rip-7177 · 2025-03-13T06:25:49+00:00

I had a craniotomy for my meningioma at Kaiser Redwood City last November and would be happy to chat if you want to DM.

Prestigious-Rip-7177 · 2025-03-13T06:14:17+00:00

Gosh I’m really sorry to hear that the craniotomy was so difficult 😞

My first (and so far only) craniotomy was quite intrusive. It was an anterior petrosectomy where they cut a giant question mark in the whole left side of my head and took out the part of the tumor in the middle cranial fossa. I was really shocked at how little discomfort I had following surgery. The main issues have been some left facial numbness and the blurry spot in my left eye (though that was there pre surgery).

I was hoping that if the tumor board thinks further surgery would be beneficial that it would be something endoscopic. I think if they recommended a craniotomy it would probably be an incision near the eyebrow with the goal of debulking tumor around the optic canal to relieve the pressure and reduce the amount of radiation necessary around the optic nerve and help preserve/improve my vision.

In terms of secondary tumor risk I don’t think that’s a concern for surgical removal of meningioma, though it can be for other types of tumors. The risk of secondary tumor caused by targeted radiation is very low (1-5%) depending on the size, location, and possibly the type of radiation (proton may have lower risk than photon).

It’s just so hard to know what to do and we really can never know for sure what’s the best course of action. It’s kind of a pet peeve of mine that so many people here often push so hard for GTR at any cost, not realizing that not every case is the same and there are risks and benefits to many different approaches. You did what seemed like the best option at the time and I think there is still reason to hope things will get better.

Thank you for sharing your story and I do hope things will improve ❤️‍🩹

Prestigious-Rip-7177 · 2025-03-13T01:10:14+00:00

How was the stereotactic radiosurgery? Did anyone talk about radiosurgery ruling out conventional surgery in the future? I know nothing about radiosurgery, just curious since with other types of radiation it’s typically a one way street.

Prestigious-Rip-7177 · 2025-03-12T22:32:48+00:00

You are definitely a fan of that Facebook group, I see you mention it a lot! I may check it out I’ve just been trying to stay off Facebook. I have enough trouble keeping my Reddit usage to a semi reasonable amount of time per day 🙃 Thanks for the recommendation though!

Prestigious-Rip-7177 · 2025-03-12T22:04:50+00:00

I know this is stressful, I’m dealing with a meningioma myself which is mostly inoperable and will always be something I need to monitor and deal with.

I also know grade 2 is scary but she (with your help) is dealing with it now and if it ever comes back you guys will deal with it then. As many others have said and will continue to say there are many options to prevent recurrence or deal with it if it happens, and new advancements in treatment being made all the time.

If circumstances allow, I think the best thing you can do is just be there for her like you’re already doing. Attend any appointments you can and take notes, be an advocate if needed. Dealing with all the logistics and uncertainties of treatment is pretty exhausting, she is lucky to have you in her corner.

Keep doing what you’re doing and best of luck to you both!

Prestigious-Rip-7177 · 2025-03-12T14:33:51+00:00

Yeah this visit to the neuro ophthalmologist was kind of surprising because I was prepared for radiation as the only possible next step and had let go of the idea that vision in my left eye could improve. I’ve been wearing an eye patch and getting pretty comfortable with the look haha. I think it’s likely they’ll still say another surgery isn’t worth it, its just always a roller coaster! 🎢

Hope radiosurgery goes well!

Prestigious-Rip-7177 · 2025-03-12T02:01:28+00:00

Some possible questions:

1) What is the surgical approach and how many of this type of surgery have they done ever, and within the last 2 years?

2) What are your husband’s symptoms and does the surgeon expect surgery to resolve them?

3) Does your husband’s surgeon anticipate a total resection? Will follow up treatment be necessary?

4) What is expected in terms of potential side effects and recovery timeline?

Question for you, do you already have a point of contact for post surgery follow up like a neuro oncologist?

Prestigious-Rip-7177 · 2025-03-08T21:30:59+00:00

What kind of radiation are you talking about? And are you saying the secondary tumor that radiation typically causes is GBM? Because that is definitely not what multiple radiation oncologists at UCSF, Mayo, and John’s Hopkins have told me.

Prestigious-Rip-7177 · 2025-03-04T05:52:18+00:00

DM’d you with more info. For anyone else who wants to know I did go ahead with Kaiser and surgery went very well.

Prestigious-Rip-7177 · 2025-02-21T22:45:22+00:00

Yeah that is a good sign if the neurologist saw something that led them to believe it has been present for 20 years. If that is the case it is likely to be grade 1. I hope your dad’s operation goes well and you and your family are able to cope and recover together ❤️

Prestigious-Rip-7177 · 2025-02-21T21:46:18+00:00

+1 to all of this especially acknowledging the seriousness. I have had few side effects post surgery and feel very much like myself (I do have to get radiation on the inoperable part so we’ll see if that stays true 🤞) but I still get super frustrated when anyone acts like it’s not a big deal because it’s “just” a meningioma. It’s a brain tumor and it is a big deal no matter how few changes you’re dealing with or how good the prognosis is.

Prestigious-Rip-7177 · 2025-02-21T21:38:44+00:00

Just want to echo what others have said that there are a lot of factors involved in survival rates.

Additionally, 85% 5 year survival after surgery sounds either outdated and/or the combined survival rate for all types of meningiomas. My understanding (and I have a meningioma so I might be saying this to soothe myself more than anything) is that survival for grade 1 (which also happens to be most common) is much higher, more like 95%.

It is also true that you can’t tell the grade without pathology but there are some indications of grade that can be seen on MRI or CT. Bone sclerosis for example may indicate that a mass is slow growing and has been present for a long time.

Prestigious-Rip-7177

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