ExcitedMama Posted May 25, 2016 Share Posted May 25, 2016 My husband had a body scan this morning as part of a service through our insurance. The doctor found a mass on his brain and was very surprised that he has no symptoms from it. Of course I am beyond terrified. I'm trying to get him in a neurologist ASAP but of course that's not easy. In the meantime I'm a mess. I don't want to google because I'm scared it will make it worse. Does anyone have experience with this? Please please tell me it will be ok. Quote Link to comment Share on other sites More sharing options...
Stacia Posted May 25, 2016 Share Posted May 25, 2016 I have no idea, but wanted to send :grouphug: :grouphug:. 1 Quote Link to comment Share on other sites More sharing options...
goldberry Posted May 25, 2016 Share Posted May 25, 2016 They found a mass in DH when he had a routine scan in the ER after a traffic accident. At a followup with the neuro, he couldn't even find whatever it was they thought they saw at the first scan. I would consider how skilled/specialized the person reading the scan might be and wait for confirmation before freaking out too much. Easier said than done! :grouphug: 11 Quote Link to comment Share on other sites More sharing options...
TrulySusan Posted May 25, 2016 Share Posted May 25, 2016 My pre-mom career was neurosurgery (Physicians Assistant). Mass is very vague. It could be nothing or something awful. It would be hard to know if that is all you have to go by. Did the doctor doing the scan not refer your DH to someone for follow up? 3 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted May 25, 2016 Share Posted May 25, 2016 Yes, I do. The scan should've triggered a consult with a neuro immediately. Our experience was that one walked in the door before we left the scanning suitel. The fact that he wasn't immediately admitted to hospital could be a good sign. Do you know where it is? Do you know how big it is? Don't accept an appointment any more than a week out. Also, generally, where are you located? Feel free to pm me. There are some hospitals that are well known for brain/neuro treatment and you want to go there....they are part of the brain tumor consortium. 6 Quote Link to comment Share on other sites More sharing options...
TrulySusan Posted May 25, 2016 Share Posted May 25, 2016 I wanted to add that having no symptoms is great. It frequently indicates something very slow growing. The worst kind of brain tumor grows quickly and would likely be symptomatic. Also, I agree with PP who said sometimes people think they see something, and later nothing is actually there. 3 Quote Link to comment Share on other sites More sharing options...
gypsymama Posted May 25, 2016 Share Posted May 25, 2016 Not personally but I have a friend that just went through this. She was terrified. We were all terrified. Turns out she's just fine. Took some appointments and some work (I don't know all the details) but she's been given a 100% clear health cert now. :) I know it's easier said than done but please try to think positive and wait for more information. I find the fact that the doctor didn't refer him immediately to a specialist odd and hopefully a good sign? Hugs!!! I hope everything works out for the best. I'll keep you and your family in my thoughts. 1 Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted May 25, 2016 Share Posted May 25, 2016 Big hugs to you. That's nerve racking. Hopefully you get in quick to find out. 2 Quote Link to comment Share on other sites More sharing options...
rmtzc2009 Posted May 25, 2016 Share Posted May 25, 2016 A neighbor of mine needed something scanned, I don't recall what body part. The doctor accidentally checked the box to have her brain scanned. It turned out she had a large mass. The doctors caught it in time and were able to remove it. She is still doing great. (She also, showed no signs. I don't know the specifics of her mass but I am hopeful you husband's mass is treatable and/or removable) Doctors can do SO much these days. I say this so gently, try not to put the cart before the horse and handle each piece of info as it comes. I know.....easier said then done. And NO, don't Google this!!! Get some info first, so you know what your dealing with, then, you can research . Sending you a big virtual hug. You may want to get a notebook started and begin to log everything. You will possibly have a lot of info thrown at you. Wishing the very best outcome for you DH!! Blessings 4 Quote Link to comment Share on other sites More sharing options...
katilac Posted May 25, 2016 Share Posted May 25, 2016 My cousin had to have a large mass removed from his brain. It was very scary at the time, and it did take him months to recover fully, but he did recover and is doing fine now. The doctor should be calling neuros for you, to get a quick appointment. What did he say when dh left? If he just said, hey, you might want to call someone, then he's not doing his job. 4 Quote Link to comment Share on other sites More sharing options...
Mom25girls Posted May 25, 2016 Share Posted May 25, 2016 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted May 25, 2016 Share Posted May 25, 2016 I have no experience with it but very scary! Hopefully it is an irregular scan and noting serious upon further investigation :( Quote Link to comment Share on other sites More sharing options...
creekland Posted May 25, 2016 Share Posted May 25, 2016 I have some experience with it - both personal and from a former co-worker at school plus those I met along the way. There are oodles of different types of masses and locations. How bad it is will 100% depend upon the type and location. The former co-worker passed away about 3 weeks after getting her diagnosis, BUT she had massive headaches before she went to the doctor to get diagnosed. Me? I waited 18 months to see if symptoms would improve on their own before grudgingly trekking off to a doctor and am still alive and kicking close to 3 years after that with no doom imminent (though that always could change). The difference between us was the type and position. It's about as wide of a variation as one can get. In BOTH cases, we heard the same day as our scan what the issue was, so the fact that you haven't makes me wonder a little about the diagnosis. Other things can be involved. I would expect the fact that there have been no symptoms should be good. Be wary of agreeing to radiation. It was my only option (due to position), but at this point I'm not sure if it made life better or worse or even no difference. At the time it seemed like a no-brainer, but now I'm not so sure due to what might be developing problems from the radiation that could be worse than the original tumor. I should know more in a month. Letting even a slow growing tumor continue to grow also isn't seemingly a wise decision, so it's a tough call to referee at this point. 4 Quote Link to comment Share on other sites More sharing options...
Minerva Posted May 25, 2016 Share Posted May 25, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted May 25, 2016 Share Posted May 25, 2016 if it was part of a mobile set up I've heard those scans aren't very accurate at all. I'd get in to an actual doctor asap, and I'll pray for you and your husband. 2 Quote Link to comment Share on other sites More sharing options...
Cinder Posted May 25, 2016 Share Posted May 25, 2016 No personal experience, but years ago I worked with a woman who had a large, non-malignant mass. She had had headaches that gradually got so bad she couldn't bear the pain. That's when she found out she had a fist-sized mass behind her right eye. She ended up needing 2 surgeries: one to remove most of the mass, then the second to remove as much as possible from around the optic nerve. She recovered amazingly quickly and was back to work in just a few days each time. (She traveled out-of-state for her surgery so those few days included travel time.) She did need to wear an eye patch after the second surgery while her optic nerve/eye recovered. She was quite fortunate--her vision returned and she had no other negative effects from the tumor or the surgeries. :grouphug: Hugs to you. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted May 25, 2016 Share Posted May 25, 2016 it depends exactly where the mass was and then *what* it was. that he is having "no" physical symptoms is a good sign. there are many possibilities of what it could mean, with varying degrees of seriousness. and that doesn't mean it will do anything. I know people with AVMs which were only found after a scan for a concussion - they had no symptoms. then again . . . don't get me started on drs who can't read an x-ray . . . . do follow through with an actual neurologist. don't freak out. it will actually hinder you being able to be proactive in dealing with this. 1 Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted May 25, 2016 Share Posted May 25, 2016 I have no idea. Many prayers for you and dh, that all is well with him and you find peace, serenity and strength to deal with whatever is going on. Hoping it's nothing! Also hope you get an appointment very soon. 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted May 25, 2016 Share Posted May 25, 2016 Has your family doctor seen the scan? They could get you in more quickly if necessary. Our personal world has people with all kinds of brain tumors. Don't read the internet, too much info and it too many things it may or may not be. :grouphug: If he does have something read like crazy. 1 Quote Link to comment Share on other sites More sharing options...
ExcitedMama Posted May 26, 2016 Author Share Posted May 26, 2016 Thank you everyone. It really helps to hear positive stories since I'm a complete wreck over this. Creekland I'm so sorry about what you're going through!! Thank you for the advice about radiation. 1 Quote Link to comment Share on other sites More sharing options...
magnificent_baby Posted May 26, 2016 Share Posted May 26, 2016 I know far more people with benign masses/lesions on the brain, than those with malignant lesions (in fact, my daughter, grandpa and nephew). My grandpa has a recurring benign tumor, my daughter and nephew have cysts that are not causing any issues at all. Keep calm and don't google, there's no reason to get even more worried. I would call his family doc for him/her to order an MRI while you are waiting on getting into neurology. The results will be ready while you are awaiting and will help determine how quickly he needs to be seen. Either way, be persistent when getting things scheduled. In my experience, it can take forever to get called back by staff at our primary clinics so I always call again if no response in 8 hours or so. I also try to bypass the primary doc's schedulers and talk with the nurse, who can get you in quicker, IME. Stay calm! It could also be a false positive! 2 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted May 27, 2016 Share Posted May 27, 2016 Has your family doctor seen the scan? They could get you in more quickly if necessary. Our personal world has people with all kinds of brain tumors. Don't read the internet, too much info and it too many things it may or may not be. :grouphug: If he does have something read like crazy. family drs are NOT known for being able to read x-rays, mris,cts, etc. my experience with them looking at x-rays is they miss all but the most obvious - and even then, I know of one that *I* could easily see, that was dismissed as irrelevant. (it was a fracture of a vertebra pinching a nerve. the pcp ignored it.) you want a neurological radiologist to look at brain scans. they're more likely to read it correctly. 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted May 27, 2016 Share Posted May 27, 2016 family drs are NOT known for being able to read x-rays, mris,cts, etc. my experience with them looking at x-rays is they miss all but the most obvious - and even then, I know of one that *I* could easily see, that was dismissed as irrelevant. (it was a fracture of a vertebra pinching a nerve. the pcp ignored it.) you want a neurological radiologist to look at brain scans. they're more likely to read it correctly. My family doctor has the neuro folk take over but gets one in quickly. not diagnosing. Just the fact that a radiologist said they saw something is reason enough for a family doctor to schedule an appointment soon with a specialist. Quote Link to comment Share on other sites More sharing options...
creekland Posted May 27, 2016 Share Posted May 27, 2016 Thank you everyone. It really helps to hear positive stories since I'm a complete wreck over this. Creekland I'm so sorry about what you're going through!! Thank you for the advice about radiation. Don't feel bad. The one big thing I've learned along the way is that there are plenty of other issues one can draw the short stick for and comparatively, mine is just fine. It also seems to me that everyone (family group anyway) draws the short stick for something in our lives - at some point. When one realizes that all of us (or at least most of us) get to deal with something - either ourselves or a close loved one - it makes dealing with what we get more "matter of fact" than an emotional "why me/us?" It never hurts to be reminded to seize the day - enjoying the moment - though. Small stuff really is small stuff and one gets far more out of life by being able to overlook it. Most of us who deal with or have dealt with issues are stymied by the small stuff that bother folks - not paper cuts or other "real" issues in the moment that we all get, but relational (or other) small stuff like being bothered by things relatives do, etc. "You won't talk with your sibling because of that??? Um, ok." 2 Quote Link to comment Share on other sites More sharing options...
umsami Posted May 27, 2016 Share Posted May 27, 2016 Did you ask for a disk of the scan? That will make your life much easier. It can be taken to whomever you consult with, for second opinions, etc. Agree with having a neuro-radiologist read it. My Dad was a radiologist for 50+ years. DH is an ophthalmologist. I have numerous stories of misread and misdiagnosed scans. If the MRi was actually done by a radiologist, s/he should have given you more info plus a referral. If it was done by a tech, 1) they could be wrong and 2)they should have gotten the radiologist in to talk with you. 2 Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted May 27, 2016 Share Posted May 27, 2016 I have nothing to offer, but I did pray for your husband (and your peace of mind). Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted May 27, 2016 Share Posted May 27, 2016 Praying for you and your dh as you share this difficult journey together. :grouphug: Quote Link to comment Share on other sites More sharing options...
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