Watch and wait vs radiation

[Gobucks87]

I had large meningioma removed 3 months ago. The radiologist suggested i start radiation treatment preemptively, since i had a grade 2 meningioma. Should i watch and wait or get radiation? Thanks

[Sister-sister]

Has woundering was it all removed?

[Gobucks87 in reply to Sister-sister]

They did a gross total resection, but there may be left over tumor cells or maybe like a small residual left behind.

[Sister-sister in reply to Gobucks87]

HiMine was also a grade 2. The tumour was fully removed, but I was not offered to recieve radiotherapy. I'm very worried if mine comes back too and im only 31. I think it's best to do your research and get as much advise as possible before you make a decision.

All the best

[Gobucks87 in reply to Sister-sister]

Did they suggest radiation treatment at all?

[Sister-sister in reply to Gobucks87]

HiNo they didn't, I think they don't offer it to everyone. But I am going to ask my consultant about it, see what he says

[Piquedame927]

I would wait.

[Gobucks87 in reply to Piquedame927]

Wait? Ok why do you say wait? Just curious. They told me my meningioma is grade 2 and has a higher likelihood of growing back. And they say its better to radiate it early and kill off the cells. Have you had a bad experience?

[Trvlr in reply to Gobucks87]

My neurologist said that radiation treatments run the risk of zapping healthy brain cells.

[Piquedame927]

A meningioma is a majorly slow growing tumor. I have had two surgeries for mine and still have 1/3 of it left because it is wrapped around my carotid artery. My last surgery was six years ago. Since then, I have had two very tiny tumors that were nowhere close to my remaining tumor and had gamma knife radiation on those. My doctor wanted me to have radiation for the remainder of my tumor, but I have no symptoms and I don’t want to risk a six week round of daily radiation because it’s really not good for the body. Entirely up to you of course, but my theory is that my tumor will not grow too much more in the remainder of my lifetime. I will be 70 years old this year.

[Gobucks87 in reply to Piquedame927]

Oh gotcha gotcha. What grade tumor do you have? Mine is grade 2 and im only 35 yearsOld. I dont know over how long my tumor was growing but they discovered it on C-T in Jan of 2022 and im 35 and it was like 6cm, pretty big. These are more aggressive and likely to grow back. So they suggest to radiate. If i wait it might grow within 2-4 yrs probably. I wonder if there have been grade 2’s that never grew back? Is there anything else we can do to minimize chances of tumors growing back or shrink them?

[touring]

I had Gamma knife radio surgery after the majority of my meningioma had been removed. The idea behind this is to slow down or stop any further growth - maybe even shrink the remainder. So far this seems to have been successful, but it was only last year so I need more reviews to judge how successful it has been. I think a lot depends on the location and how dangerous growth could be. You should have a talk about this with your specialist - my radio surgery was just one session, which was better than 6 weeks of radio therapy!

[Gobucks87 in reply to touring]

Thank you for that info, radio surgery wasnt even offered as an option to me. The only option offered was radiation and it was photon. I learned of the difference of proton & photon from someone on Youtube i was talking to & brought it up to the radiologist who then said i would have to travel to another state because they dont offer the proton therapy here where i live. Which is shocking. Another thing is , in my last mri scan there is a comment in regards to some enhancement near the superior sagital sinus, but it says basically this could be residual leftover tumor that the surgeon was not able to safely remove during surgery or it could be a vein. How is it not possiboe to identify which one it is? And with radio surgery, gamma knife; radiation (etc..) would they know whether or not to target and zap this area?

[touring]

I am really surprised that you cannot get this sort of treatment. I am in UK and, although we have to travel for it, we seem to be offered the possibility of the treatment if it is considered to be a suitable way forward. As for seeing what the various things are, a CT scan would be helpful I imagine. I was given one before the gamma knife session so that the relevant areas could be pinpointed accurately. I have a friend who is on 'watch and wait' with annual scans, but the tumour is very slow growing and not in a dangerous place. Everyone seems to have a different scenario; I just know that with mine, it couldn't be left any longer without surgery and was too large at that stage for gamma knife radio surgery. Keep asking questions of your consultant and get a second opinion if you feel it's necessary. Keep smiling!

[Gobucks87 in reply to touring]

Not sure if my replies are too long but it wouldn’t let me reply. Radiologist suggested radiation up front as opposed to watch&wait. He did not bring up SRS as an option. But they got probably 95-98% of the tumor out, it was considered a gross total resection. But they still recommend hitting it with radiation to limit the chances of it growing back. Does your friend have a grade 2 WHO meningioma? How long do you have to take off of work for radiation? Both during treatment and post treatment ?

[touring in reply to Gobucks87]

I know things are different over here, but I wasn't given a grade for the tumour and I don't think my friend was either. We just knew they were benign and mine was growing very quickly, my friend's extremely slowly! Mine was possibly life-threatening because of location. Unfortunately can't help with the work situation as we are both retired, but I wasn't allowed to drive for at least one month after the radio surgery. I didn't have any major reaction so I'm sure I could have continued working almost immediately - again your consultant would be able to advise you.

[1968_Hiccup16 in reply to Gobucks87]

Hi just reading your piece and thought I’d mentioni had an 11 hr surgery to remove most of my meningioma back in 2016 when I was 48 . Oin 2022 my MRI showed it was slowly growing again . Mine is on the brain stem so they’re all different . I have just had 5 weeks of STA radiotherapy . I worked 5 hrs each day then went off to 15 min zapping . Didn’t get tired until the last 2 weeks then another 2 weeks after but was able to work just shorter days . I’m now 54 so was keen to try to shrink it . They choose the length of radio dependant on the shape of the tumour so as not to damage healthy cells . I lost my hair in sections where the rays were directed . But looks to be growing back . Was not expecting that .! They are slow growing so you have time for second opinions . It’s going to be OK 😁

[Gobucks87 in reply to 1968_Hiccup16]

Thanks so much for your perspective and experience. It truly is a nerve wrecking experience to have to go through. So you didnt begin to feel the weakness and fatigue until 3 weeks into the radiation? I might be able to get my hours modified at work, i will be traveling to and from Milwaukee —> Chicago most likely for proton treatments as they are supposed to he safer. How long does the fatigue last after the radiation treatments? Do you bounce back pretty quick?

[1968_Hiccup16 in reply to Gobucks87]

Hi . I was tired for 2-3 weeks post radio but was able to work 3 days week 10 hrs day but had little naps on my days off . Felt fine after the 3 weeks

[Gobucks87 in reply to 1968_Hiccup16]

Thank you for that. And you felt good about getting the radiation? Some people say they think they would have been better off without it and think it made things worse

[Lytham]

Hi I had steriotactic radiosurgery (gamma knife) to remove risidual after a craniotomy and personally I would do what the specialists recommend, they have their reasons. Good luck x

[Quiltingrammy]

I agree with what many have already said. Do your research. Looks like you are. Get the options available and side effects to each of them. I had an incidental finding in Jan 2022, the local NS said one of my tumors had to be removed within two weeks and the other was inoperable. I needed to look at both the surgeon’s back-up, if needed, and did the local hospital have a neuro ICU. We went to Boston, Dana Farber Cancer Institute, with the NS there saying both could be operated on, I did not need the parietal one removed within two weeks. We should watch and wait. Four months later, I am looking to have another MRI this month. Please forgive me for the “me symptoms “ but thought it might help. We are a large country, so it’s not unusual to travel to another state. Just check with your insurance company to see what is covered. I opted for the surgeon and facility that does dozens of these a day, versus one that does dozens a month/year. Hope this helps your decision. Best of luck..

[Gobucks87 in reply to Quiltingrammy]

Thanks so much I appreciate your response. Its very helpful to speak to others about their experience. Dana farber is well known for their tumor institute. They found my large meningioma in Jan of 2022 also. However they didnt remove it until feb because i had covid. But its been about 3 months since the tumorr was removed and i still keep getting this whooshing pressure ontop of the head especially when going from seated to standing. The pressure is in the spot where the tumor was previously located and you can actually see the skin rising & falling with the pulsating. Also get pain behind the eyes that sort of comes and goes and ringing in the ears. Do you have any of these symptoms? I wonder if they get better in time or if its permanent.

[Paper2021]

Hi ask for another MRI. This will rule out if any tumour left behind. I’m Grade 2 also but had MRI whilst still in surgery and they removed it all. IF it comes back I’ll be asking to wait and watch. Hopefully it doesn’t.

[Gobucks87 in reply to Paper2021]

When did you have your tumor removed? Mine was removed in feb. So you suggest waiting to see if it grows back, as opposed to treating the area pro actively?

[Paper2021 in reply to Gobucks87]

Mine was also removed in Feb this year. I would ask your surgeon for more information. I was given the all clear from the MRI in surgery and the abnormal cells had not dispersed into the brain. Histology Graded it as a 2. Told I couldn’t be offered radiotherapy as nothing to zap. I’ll be checked again 6 months from surgery. Fingers crossed 🤞🏻 no growth.