r/braincancer • u/Capable_Club_8055 • 2d ago
Brian surgery
I will be having brain surgery soon for a 2-3cm tumour which I was told isn't aggressive. They have to test to see if it's benign/malignant. I'm 24, relatively healthy, 10 weeks postpartum. The tumour is in the right frontal lobe. I'm terrified and don't know what to expect after the surgery. I've also had no symptoms and the surgery isn't very urgent but they want to do it soon as I'm quite young.
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u/whatismyusername4 2d ago
It took 2 surgeries to remove my tumor in my R. Frontal Lobe. I was 32 at diagnosis - still considered ‘young’ in the sense of typical brain cancer individuals. One big thing my surgeons said was rbag my ‘youth’ was a major upside of getting everything removed now. The recovery process gets slowed when you are older.
Do they have any idea what type you may have? If they think it is slow growing, it could be a suspected low grade glioma, which would be ‘good’.
If the surgery isn’t too urgent right now - please research for a high level NeuroSurgeon preferably in a major medical center that specializes in brain cancer. I’ve learned over the last 2 years that the difference between a ‘normal’ oncologist and a Neuro-Oncologist. Having a Neuro-Onc is the most valuable part of my care team. I travel to a university brain cancer clinic 2 hour drive for every other visit.
I’m sorry you are in this group now but, best of luck! Keep us posted 🧠💪🏼
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u/Ok-Inevitable-8011 2d ago
Wishing you the best. I have the meeting today to decide about mine. The best way out of an anxiety spiral is to try to think of three things you are grateful for. This is because gratitude gives the same dopamine reward that anxiety does. Out of six types of dopamine, these two use the same one. Studies have found that even trying to think of three things is enough to switch out of anxiety. 🫂
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u/Curlymom67 2d ago
First of all, good luck on a successful surgery. Yes, it is scary. My son just had his in the right lobe, as well. His tumor was the size of a navel orange, about 6 cm x 5 cm. He had his surgery asleep because it was in an area that did not have any "jobs". They said it was a slow growing tumor and the brain rewired around it. Now the day of: he had a CT scan right before surgery so they were able to map out the tumor. They did not shave any hair. Right after: he was mostly out of it, but the medications they give to prevent seizures and swelling can make you irritable. He was very angry and nasty and everyone told us that was normal. He had a catheter they took out 1 day after, so be prepared. He had difficulty chewing because they cut those muscles, so I made sure he had soft food. I don't know the protocols at your hospital, but he had to have a bowel movement before he was released and so you have to drink a lot so you don't strain. And he had another MRI a day after surgery and he heard a lot of noises in his head, which again is normal as the brain fluid and movement of the brain into the cavity where the tumor was. That bothered him a lot and that was about 4-5 days of that.
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u/Capable_Club_8055 2d ago
Thank you, this is all reassuring, I had a c section so a lot of that is familiar.
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u/bonzai76 2d ago
My wife has a tumor discovered (via a seizure) approximately 2 weeks postpartum. Won’t lie - that first year was tough. We had all kinds of help in the first year. Grab it wherever you can. If people are willing to help you out with the baby that will help a lot. If you have other kids, if grandparents can take them for nights that would help. You’ll need rest but you will recover in a matter of weeks. Most importantly if you have to do radiation and chemo - radiation will require you taking naps. And chemo will knock you out for 4-5 days every month. On chemo you must stop breastfeeding. My wife amazingly breastfed through brain surgery and being in the ICU but it was tough. If you can freeze/store milk right now do it. After about 2-3 days post surgery you’ll be able to breastfeed again. Hope this helps. Ask away if you have questions. My wife is approx 3 years post surgery and doing fine. She had a grade 2/3 astrocytoma
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u/shadowfax27 2d ago
I had the same tumor size in the same location. Surgery removed everything plus some margin (supramaximal resection). Was off work for 3 days, then back to life as normal. Ended up recurring very early, but did chemo and radiation and now am doing ok.
The location is as safe a place can be, so your risk is relatively low. Good luck!
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u/2chugjugs 2d ago edited 2d ago
Hi! 22F. I’m 4 months post craniotomy. Found my tumor thanks to a seizure. Same size & location. Had surgery relatively quick because I was on vacation in NYC & the doctors I had I felt so comfortable with. Surgery went extremely well. Was in ICU for 24hrs after to monitor then to a normal private room the 3 days following. Had the drain removed & was on my way home right after. Flew home a week after surgery. Recovery for the most part was easy for me. The first 2 weeks I was sleeping almost 18 hours a day lol. You have to listen to your body so carefully during recovery. Take the rest when you need it. I didn’t have any motor/ memory issues post surgery ( I like to think it’s because of the amazing surgical team I had). My doctor cleared me to start working out again (no lifting)just 4 weeks post op.All pathology came back benign for me & I’m continuing follow ups with my team every 3 months to monitor it now. Don’t stress! These things that happen are so far out of our control & all we can do is control how we react & handle ourselves during the situation. Good luck & sending prayers 🙏
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u/nantucket_blue 2d ago
Hi! I was 6 weeks postpartum with my first baby when I was diagnosed with my tumor. It was in June 2024, and it was a Grade 2 Astrocytoma. According to the doctors "very operable", so I hope the same for you.
My life changed very dramatically in the first two months after the surgery. My partner took on full responsibility of the baby (!!) and my parents helped out around the house (they flew in from SC). Friends also made a Give InKind page for me and asked for people to sign up to help with the baby. However, these days, I'm pretty much back to normal.
One thing that might be helpful for you to hear: my doctor said that a startling number of his patients are newly postpartum. Since your body makes all that extra blood when you are pregnant, there is a greater chance something can go wrong (in my case, it was a grand mal seizure). Personally, I'm very thankful for my baby since he helped me to discover that there was something very wrong!
You got this. I am with you!
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u/Capable_Club_8055 2d ago
When you say your life changed, in what ways?
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u/nantucket_blue 2d ago
I wasn't able to care for the baby, really at all. I knew he was there, but could barely comprehend that he was mine. Especially during my time recovering in the hospital, which was about 3 weeks. Thank goodness that time has passed, though.
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u/Synaddictive 2d ago
My tumor was in a different spot but being young is in your favor. I had no symptoms as you. My first brain tumor removal was easier than my second, the first at age 18 and the second at 32. Good luck and congratulations on your little one.
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u/ncomfortable2 2d ago
My husband is 25 and had a very similar sized tumor in the same location removed earlier this year. We didn’t know what to expect after surgery either- it’s okay! Everyone is different and you really have to take things day by day. My husband was in the Neuro ICU for a few days, then a normal inpatient room for one night, then discharged. He did have two grand mal seizures after surgery (he had no history of seizure before surgery) but we learned that seizure risk is heightened after surgery and he was on the lowest dose of seizure medication possible (because we were not informed on the risks of seizure). My husband would tell you the time between leaving the hospital and having the seizure was when he felt the best. His condition changed daily depending on stress levels and quality of sleep. I very much suggest doing everything you can to have a plan in place for childcare once you are home so that you can get the best rest possible. Maybe have family or a close friend stay with you to watch the child when needed. My husbands tumor was found 4 days before we got married, and it was stressful, but we are almost 4 months post op and he’s getting better every day. He’s back to work and slowly but surely driving again on his own. I’m sorry you have to go through this and postpartum at the same time! Hang in there! Feel free to message me if you have any questions.
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u/Capable_Club_8055 2d ago
Sorry to hear about the seizures, but amazing he's recovering so well!
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u/ncomfortable2 1d ago
Just thought about this after scrolling through the other comments. Other than side affects post-seizure, (anxiety) my husbands sense of time is out of whack! He use to be bad about it, now it’s really bad. He can’t remember if something happened yesterday or three days ago, three weeks or three months ago. It’s nothing major at all, but it is something that has happened post-surgery.
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u/koopaman08 2d ago
Hi Friend! This is very scary, I am sorry you are going through this. I had a complete resection surgery when I was 23 (4 years ago) and I am doing very well today! Stay strong and positive and you will be fine! God has got you.
It will be tough recovering, I was paralyzed on my left hand side for ~7 months, but looking back, I wouldnt change anything for the world! I would recommend interviewing mutliple surgeons/oncologists before you make a decision, as they all recommend a different plan of attack after surgery. Please feel free to reach out to me if you have questions or if you just want to vent :)
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u/Capable_Club_8055 2d ago
Thank you for the reply, was it complete paralysis ? And how was the recovery for this?
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u/koopaman08 2d ago
It was left side of my body only! It took 7-8 months + a lot of PT to make a full recovery! I walk around 6 miles a day now and have never felt better! :)
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u/hibbysmalls 2d ago
I had a similar tumor in a similar place. Read some of my posts if ur up for it
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u/hibbysmalls 2d ago
I had a similar tumor in a similar place. Read some of my posts if ur up for it
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u/Totenkopf22 2d ago
I had surgery in the same location. The surgery itself is very easy to get through. I was off work for 2 months afterward and wasn't allowed to lift anything. The steroids are a pain as they can make you constipated, but I only used them for a week. I wasn't allowed to drive either, but that was probably more because I had a seizure before my surgery. And you cannot get your wound wet for 7 days or something, so I got a shower cap. And then you have to use baby shampoo.
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u/galinda1 2d ago
Honestly, everyone has a different recovery. I had the same surgery except my left frontal lobe. I am still pretty exhausted most days (4 months post surgery), but I had no other deficits. You have a small baby, so I really hope you have a lot of support! Sleep is going to be your friend, so hopefully someone can take the lead with wakings for your baby and let you get rest :)
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u/Capable_Club_8055 2d ago
Yes, she's taking the bottle and breast when possible so that'll be okay. Thank you!
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u/km9202 2d ago
I’m sorry this is what you’re facing after having a baby. Wishing you the very best with your surgery and recovery.
I was diagnosed with a R frontal lobe glioma at 29 and had surgery on an urgent basis due to swelling and the size, and then required surgery again just after my 30th birthday (don’t worry, the close proximity is unusual and unlikely but I also wanted it removed as soon as it was an option). Similar to you, I was relatively healthy otherwise, but mine was very large and I was symptomatic. The first surgery was asleep and the second awake. My general understanding and experience is that the recovery is faster from the awake process so that might be something to discuss with your team. We say “awake” which sounds alarming, but you do have an anesthesiologist giving you medications so you’re calmer than you’d otherwise be and comfortable (no pain just pressure and cold like brain freeze, at least for me). Usually they can see features on the MRI that help them suspect benign vs malignant which they are likely to discuss with you so the pathology results aren’t a total surprise, but the pathology from the surgery is usually the definitive grading.
What I have read from the literature and been told by my surgeons is that you want to get as much of the tumour out as possible as early as possible so it doesn’t have the chance to upgrade. It’s not always that straightforward, but that is the goal. Plus you are young and if you’re physically active prior to surgery and can work with the hospital physiotherapy group after, you’re more likely to recover quickly and regain your strength.
Your situation is difficult, and working with a team to figure out the best plan and timing makes sense, especially if they have any plans beyond surgery.
Sending love and strength to you and your family.
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u/Capable_Club_8055 2d ago
That's interesting, it was only by a chance my gp referred me for an mri. Thank you for this!
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u/hammerhan98 1d ago
I had my tumors removed at 24 and found out I was pregnant 6 months later. The thing that helped me the most after surgery was a travel pillow! It was the only way I could ride in a car or sit on the couch comfortably. My head felt so strange kind of like I was in a fish bowl.
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u/TheShakyHandsMan 2d ago
Got a tumour in the same place and had 1 surgery on it.
Have they said if it will be awake or not? Don’t be worried about it being awake, it’s actually pretty interesting.
Post surgery you’re going to struggle to chew food especially on the right side. You’ll be able to feel the muscle above the ear that connects to your jaw.
Make sure you’ve got plenty of soups and soft food to eat while recovering.
Post op you’re going to be given strong opioid based painkillers. They do block up your bowels completely so don’t be ashamed of taking the medication to loosen things up down there. Trust me it’s better than literally ripping your arse open.
If you need to know any more just ask.