r/lowgradegliomas • u/Glittering_Bug435 • Jun 29 '23
I am struggling without answers
I (37F) am under observation for an LGG in my right frontal lobe (2cm) found on MRI in February. Repeat MRI in May shows tumor stability. The next MRI is in August. I don't have a definitive diagnosis, and it's driving me crazy. My team feels a 60%-70% chance it is glioma. I don't know what to tell my family and friends. "I might have cancer?"
I understand the risks of biopsy. I agree with the plan to not surgically intervene just yet. I just don't know how to move forward without knowing what the hell is happening :(
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u/Plastic_Elevator_863 Jun 29 '23
I have had a 6 months gap between the initial finding on imaging and the surgery. There was, like you, a possibility raised by the radiologist that it wasnât a glioma. So we waited a bit. At the 6 months mark, still no change. It was clear it had not disappeared and we moved forward with biopsy via awake craniotomy. Grade 2 astrocytoma was the verdict. I spent the time planning for best treatment plan, asking for second opinions, get relocating, getting additional scans that could maybe give us more information and going on holidays.
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u/Glittering_Bug435 Jun 30 '23
Thank you for sharing your experience. I hope you are doing well. One doc said if and when the times come to biopsy, and we do confirm LGG, we still may not start treatment yet. We would just monitor. The other doc said if and when the time comes, he would attempt a complete resection. Which I would probably prefer. Do you mind sharing what additional scans you did and what you ultimately chose for treatment?
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u/Plastic_Elevator_863 Jun 30 '23
When I was in London UCLH (Queenâs Square) and prepped for the first surgery, I had a functional MRI. They checked location for speech, as well as motor function of lips and hand. Thankfully speech was located on the opposite side of my brain. However I now learned that the tumor was overlapping motor function on the left side of my body which would make it tricky. My tumor is also ~2cm and I have no symptoms. I was 34y old. Along with this functional MRI (fMRI), they did MR spectroscopic imaging (MRS) where they check things like choline to creatine ratio or NAA peaks. It can give an indication if may be a higher grade glioma. This MRS led to postpone the surgery as mentioned in the previous comment as the radiologist thought the results to be inconsistent with a glioma. I was given 3 months time until my next MRI and I relocated to Germany. I was in London only for work but decided to move back to be closer to family and friends for a possible long journey ahead. At CharitĂ© Berlin, instead of a MRS, they use a 18-FET-PET MRI to try to evaluate the Grade ahead of an invasive surgery. It did not give additional information but confirm the likelihood of a low grade glioma with low activity. And instead of a functional MRI to plan the surgery and the motor function areas to avoid, I got a TMS motor mapping. Results were the same: it is unlikely a significant resection without impairing movement of the left side of my body was possible.
So ultimately, as other said, they have to go in there to get tissue sample and attempt resection to really know. I decided for the awake craniotomy to give my neuro surgeon the best chance at removing the most she could and take an active participation at monitoring my motor and sensory function and prevent long term damage. I also feel safer awake and fully aware of what is going on (I understand this may be an unusual take). Sadly after the mapping during the surgery, it was clear not much could be taken out safely. So she took the biggest sample she could. A bit more than what is needed for a normal biopsy. It is not ideal but I now know I gave it my best attempt at surgery so no regret. It is an Astrocytoma, Grade 2. Combined with the fact that it is unresectable, it puts me in the category of « high risk low grade glioma » and the recommended treatment is (proton) radiotherapy followed by (PC) chemotherapy.
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u/oceangirl227 Jul 19 '25
Is yours in your left temporal lobe by chance? Thanks where mine is located.
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u/Jazzy4Noodles Jun 29 '23
Are you being treated at a major brain tumor center? Have you received a second opinion? There are guidelines published by the NCCN (National Comprehensive Cancer Network) regarding next steps when a low grade glioma is suspected. Guidelines recommend resection if feasible or biopsy yo establish diagnosis. Ultimately the decision is yours to make along with your treatment team.
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u/Glittering_Bug435 Jun 30 '23
Thank you for your response đ I have a neuro oncology team at Wilmot Cancer Center in Rochester and had a second opinion at Roswell Park Cancer Center. Everyone thinks because I am "asymptomatic" to not intervene until imaging shows progression or symptoms arise. They biggest being seizures. I understand brain surgery is risky and I don't want to come out worse than going in. I don't know what to do đ
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u/Jazzy4Noodles Jun 30 '23
My husband is being treated at MD Anderson Cancer Center. He had a seizure in early 2020 and brain imaging showed a tumor consistent with a LGG. Based on the guidelines they recommended resection - he had an awake craniotomy with gross total resection within 3 weeks of diagnosis. Then based on histology/genetic markers of tumor tissue he was diagnosed with an Oligodendroglioma Grade II. Based on age and other risk factors he was placed on watch and wait with MRIs every 3-6 months. If he had been high risk then chemo/radiation would have been recommended. He has no signs of recurrence at this time.
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u/Reasonable-chap2000 Jul 07 '23
Jazzy can you please message me? Iâm trying to get into ms Anderson. Had some questions
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u/InfiniteVoice9371 Jun 29 '23
I would opt for a resection asap
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u/Glittering_Bug435 Jun 30 '23
Do you mind elaborating? I am really grateful to be talking to people who can relate. So thank you.
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u/InfiniteVoice9371 Jun 30 '23
If itâs LGG you are gonna have to resect it sooner or later. Itâs easier to resect smaller tumor and can guarantee you better extent of resection and maybe even supratotal reasection(huge deal in term of extending your lifespan). You can check studies - extent of resection is single most important predictor of disease outcome. And for that reason I would look for someone who can resect that tissue asap. Food for your thought : 1mm3 of tumor tissue has 10 billion cells in it.
Good luck to you!
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u/fonograph Jun 30 '23
FWIW itâs worth, your situation will only change very slightly if it is cancer. LGGs are easily treatable, but almost never fully eliminated â youâll probably have a bit of âcancerâ waiting to get bigger your whole life. Nobody really gets that, they assume that they removed the tumor so youâre fine now.
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u/GoldieWyvern Jun 29 '23
My tumor was detected April 2020. Because of the location, I was warned that I would have a difficult recovery. I elected to wait until the following January for surgery because I planned to take a month off work then anyway. I had monitoring scans during the waiting period that showed little to no activity. In hindsight, I might not have waited. My pathology came back oligo II and III.
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u/Glittering_Bug435 Jun 30 '23
Thank you for sharing â€ïž Do you mind sharing why you might have intervened sooner? How are you doing now?
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u/GoldieWyvern Jun 30 '23 edited Jun 30 '23
Knowing the final pathology is what makes me think I should have had the surgery ASAP. Some of my tumor samples were grade 2, and some were grade 3. Did my tumor progress to the anaplastic stage in those months that I waited? I wonât know the answer to that.
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Jun 29 '23
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u/Glittering_Bug435 Jun 30 '23
We consulted 2 surgeons as well and they both agree it's in a good location for removable. Which I don't know how, mine does not have clear boundaries and is "wispy". I have not had a functional MRI. There was talk of it, but I never followed up.
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u/ToughKey6101 Jun 30 '23
From my research and talks with the 2 surgeons, it is very important to resect as much as much as possible if it is a LGG. In my opinion, I would opt for an aggressive surgeon who is experienced in these tumors. Best of luck you
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u/bonzai76 Jun 29 '23
This is going to sound really simple but Iâd make a list of your burning questions before engaging in a second opinion or even having another conversation with your doctor. Iâm the caretaker of my wife through this and we use the notes app on our phone with a shared note that we both write questions into. Itâs so easy to forget when youâre sitting there in the office. Make sure you get everything answered and always make sure youâre writing down new concerns or questions when they pop up.
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u/Glittering_Bug435 Jun 30 '23
That's a good idea. Thank you. I am noticing I can't focus or remember crap.
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u/Wpgtransporter204 Sep 06 '23
Second this. When I was first told about my glioma I was in shock. I was there physically but I was not retaining anything said to me. Thankfully my partner was there and kept notes.
I was left with a whole bunch of questions after the fact. Going forward I always make a list of questions I would like answers to and ask my family members to do the same.
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u/icestationlemur Jun 29 '23
I was in the same situation and it took 2 years of monitoring for it to show noticeable change, which then triggered surgery. It wasn't a fun two years. In hindsight, I would have intervened sooner, but you never know.
Surgeon thought it might have been a benign DNET, ended up being a grade 2 astro.
Go with what you're comfortable with, but there is evidence that sooner intervention leads to better outcomes.