ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Carolgre on July 23, 2017, 12:12:14 pm
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I have had a meningioma (I hope I'm allowed to post about that in this forum; I don't know where else to go) for five years. Earlier MRIs measured it as 1.8 x 1.1 cm in axial dimension by 2.5 cm craniocaudal dimension. My most recent MRI showed a slight increase in size, to 2.0 x 1.6 in axial dimension. I have an appointment to see Dr John Golfinos on September 12. When I was first diagnosed in 2012 by Dr. John Roland at NYU, he said mengiomas grow very slowly and it was safe for me to watch and wait. I have no symptoms other than some hearing loss in my right ear. My primary care physician did some neurological tests on Friday and said everything was normal. He said that based on the slight increase in size, he doesn't feel any doctor would recommend surgery at this time. The MRI report also stated that there was minimal mass effect. I am worried sick that Dr.Golfinos might now recommend surgery. Has anyone else gone to Dr. Golfinos and does he tend to take an aggressive approach to mengiomas? I am not young, I am 73 but still working and able to function normally. I do not want to do anything that might change that.
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Hi Carolgre, glad you're telling us your story. What an individual says about your treatment is irrelevant. You're in charge.
If you want to continue observation, find a doctor that is willing to support you in your decision.
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Thank you for your reply. Now I'm not sure whether I should even keep my appointment with Dr. Golfinos. Being that he is a neurological surgeon, he will probably point me in that direction. My meningioma only increased by 0.2 cm in a five year period. My PCP said that if Dr. Golfinos recommends surgery, my PCP will make sure I get 2nd or even 3rd opinions on the matter. I guess I just want reassurance that it is not dangerous for me to continue to watch and watch.
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Hi Carolgre,
You have to do what you feel is right in your situation. Most of us have had or have ANs so may not have much experience with meningiomas,,, but having a consult with any doctor would be the same.
I feel like if I was in your shoes, I would keep my appointment for now with Dr Golfinos,, September is several months off and see how I felt about it then.
Just because he may recommend surgery does not mean you have to have it. Unlike most medical procedures where the doctor tells you what he needs to do,, say broken bone or gall bladder,,, and you have to follow their advice. With an AN, we gather recommendations and then it's really up to the patient to make the final decision about treatment or no treatment,, we usually have options available to us.
I hope you continue to do well and if your symptoms don't develop to the point of hindering your quality of life,, you may not have to do any treatment. But consults and recommendations are usually a good thing to have in hand. ,, just my thoughts,,,
Jane
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I agree with Jane. See Dr Golfinos for a consultation. Whatever he says is a suggestion. Get other opinions as well. In the end you are in charge and the one most interested in the best outcome for you.
Spend the mean-time, if you are interested, read some papers about meningiomas. If its anything like AN, it fascinating.
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Thank you both so much. I probably will see Dr. Golfinos on September 12. I know I'm ultimately the one who has to make the decision and hope that he doesn't scare me too much with dire prediction if I don't opt for surgery or even radiation. When I was first diagnosed five years, Dr. John Roland (also at NYU Langone) said that surgery can have very serious consequences and my PCP said even radiation can result in brain swelling or bleeding. Yes, I am reading as much as I can about meningiomas and learned that normal growth rate for these tumors Asis about 0.2 cm a year. Well, I went five years with no increase and this year it increased by 0.2 cm. I have minimal mass effect and, again, no symptoms other than hearing loss in my right ear. As long as I can function normally, I am going to try and stick with watch and wait. Surgery and/or radiation is just too uncertain and precarious; I can't take a chance of losing my current quality of life.
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Why not see Dr Roland instead of Dr Golfinos? Or both? If I was only going to consult one, I would always go for the doctor who advocates the least intervention. Particularly since you have no symptoms other than some hearing loss.
The visits are only information gathering exercises. Should you need treatment, its a whole other search.
Have you got a CD of your MRI? Can you see the size difference. (Radiologists sometimes get the size measurement wrong or use different standards.)
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I had seen Dr. Roland five years ago (he was the doctor who diagnosed my meningioma). I emailed him last week when I got the radiological report saying the size had slightly increased. He replied that I should now see Dr. Golfinos. That's why I'm going to see Dr. Golifinos and not Dr. Roland this time. I got discs of all my MRI's but I think only doctors can access the images. Again, my meningioma has increased from 1.8 x 1.1 cm to 2.0 x 1.6 cm. I'm hoping that it's only an error in measurement. The anticipation of consulting with a neurological surgeon has me absolutely terrified, but it was Dr. Roland who said it was now time to meet with him.
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Hi Carolgre - I have an acoustic neuroma, or very near there, on W&W for 16 years in November. It has grown slightly but I have no symptoms that I am aware of. Balance issues, but I've got a bad knee and a new knee. Anyway, hubby is the meningioma patient. We have been active on www.meningiomamommas.org for a number of years and wonder if you have tried that website? As the people here, they are very knowledgeable, helpful, and understanding.
Good luck,
Sheryl
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Hi, Sheryl:
Thank you for your message How much has your tumor grown in centimeters? I am so afraid to see a neurological surgeon because I'm sure he's going to recommend surgery now that my tumor is growing (slightly). I have no symptoms other than hearing loss in my right ear and I understand that both surgery and/or radiation have very serious consequences. I have been studying as much as I can about meningiomas and read that their natural history is to show some growth over time. I just worry about how much it can grow without eventually pressing on other parts of the brain. BTW, I tried clicking on the meningiomamomas website but there seems to no longer be a support forum there.
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Carolgre, if you'v got the CD, have you tried viewing the images? Mine comes with a folder named DICOM that contains the image information and a Viewer folder that contains StartInteleViewerCD.exe.
Just did a quick search and found http://dicom.nema.org/documents/Displaying-Medical-Images-from-a-CD-2014-05-09.pdf
Also, consider consulting with a more conservative doctor. Not sure how you find them. What state are you in?
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My CD is labeled "for physicians use only". I'm in New York City. Five years ago, when I was diagnosed by Dr. John Roland, he took a very conservative approach. That's why I'm so worried now that he is urging me to see his colleague at NYU Langone, Dr. John Golfinos. My PCP, after reading the radiological report, said he doesn't think any doctor would recommend surgery at this point and he told me that if one did, I should tell him and he would make sure I make a second, or even third, opinion.
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Carolgre, I feel like I've gone back 50 years in time. "for physicians use only"! These days patients are encouraged to be part of the process, be given information and be in charge. It's your body.
As Cityview has said, don't worry. If your only symptom is hearing loss, there's nothing that active intervention can do for you. The best way to keep hearing for as long as possible is not to have active intervention.
Who ordered the MRI? Are they happy for you to see the MRI? If not, you have to go back to square one and get an MRI from a doctor that works for you not the other way around. The good thing is that your PCP looks like someone who will look after you.
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Some interesting reading:
www.wikihow.com/Read-an-MRI
www.bicrad.com/blog/2017/2/28/a-radiologists-perspective-on-patient-access-to-electronic-health-records
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Thank you again, for your reply. Your responses to my postings have been enormously helpful and reassuring to me. Actually, I've gotten my PCP to prescribe my yearly MRI, instead of my otolargnologist (sp?)/neurologist because the specialist was always so hard to reach for results. I'm going to call my PCP next week and ask if he can look at the CD and hopefully ascertain exactly how much it has grown. I'm much more comfortable with my PCP's belief that based on the slight increase in size, no specialist would recommend surgery. I've also heard some horrific stories from people who have had the surgery. Surgeons cannot really know what damage may be incurred until they open you up and see exactly where the tumor is and what it's encroaching upon. Of course, now I've gone from "no mass effect" to "minimal mass effect", but again, my only symptom is hearing loss and some throat hoarseness which my PCP said might also be caused by acid redux. . No headaches, no dizziness. If my internist is willing and able to read the CD, I might just cancel my September 12th appointment with Dr. Golfinos.
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In my opinion,, you still have about 6 weeks to cancel your appointment with Dr Golfinos. I still believe I would keep it for a second medical opinion. Please remember that none of us are doctors on here and are just giving our opinions. We have no actual experience with treating these tumors. does your PCP have experience with meningiomas? Dr Roland and Golfinos do. I would put a lot more " faith" in either of their opinions over ours. But that's just me and my experience with doctors.
Take your time and consider giving a listen to Dr Golfinos' opinion,,( it is Dr Roland's suggestion too) ,,, " if no specialist would recommend surgery" what do you have to lose?? At least you would have an opinion from a qualified doctor,,,
Just my suggestion,,
Hope your PCP can read it for you if that will give you comfort,,,
Jane
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Hi - when I click on my original post to you the MM board and website come up. Maybe give it another try.
Even if your CD is labeled "for physicians only", I would try putting it in my computer. I always check the CD's given to me and my husband especially since, at one time, one was blank! But blank or not, I really don't know much about what I am seeing plus, they are hugely magnified which is scary.
My schwannoma or acoutic neuroma or maybe even meningioma was found incidentally in November, 2001, when I had a bad headache. The tumor at that time was .09 mm and felt on second opinion that it was a bit larger (they called it under read). The headache was a blood pressure problem. Since that time and also dealing a few years later with breast cancer, the growth has been 6 to 7 more mm's in the 16 years. The important thing is that I have basically no overt symptoms. I am supposed to have another MRI in September (every year) which I think is overdoing it with its history. Plus, hubby's M has just started to regrow a 4th time so we've been concentrating on that. It's in the left parietal region and he's had two surgeries, two separate sessions of radiation, and now is out of options except for a clinical trial. We will have more info when we hear from the doctor in Boston.
You are doing the right thing by researching and checking out other opinions. Everyone is different so don't let another's history frighten you.
Keep us posted,
Sheryl
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Carol,
A think we need to know more about your situation. Did you get all your MRIs done at the same place? How many MRIs have you had? Can you get one person to look at all of them and determine the size in all MRIs?
Are Dr Roland and Dr Golfinos both neurosurgeons? If so, why not see the more conservative doctor you first saw. Regardless of what any doctor says, its your body and your decision. Nobody but you has control. Everything is opinion. I like your PCP's philosophy of keep seeing specialists until one agrees that observation is the way to go.
I'm not sure what an internist is in this case, but if they're willing to look at your MRI that would be great. Get them to look at all your MRIs and write down the size in all cases (three dimensions for each MRI).
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I've had five MRIs - the first one in 2012. I was feeling so complacent (foolishly) that I skipped having an MRI last year. This is the first time I've had any increase in size but from what's I've been reading about meningiomas, their natural history is to grow, slowly, over time. Dr. Golfinos is a neurosurgeon and Dr. Roland is an otolargynologist/neurologist. Dr. Roland, in the beginning, tended to be on the conservative side. I have sent him an email asking if I could meet with him again but he has not replied as yet.
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Carol,
1) For the 5 MRIs, can you get one person to look at all of them at the same time and determine the size for all MRIs?
2) Were all your MRIs done at the same place and requested by the same person?
3) Does Dr Roland do acoustics neuroma surgery?
4) Did you get a chance to pop your CD in your PC to see if viewing is possible?
I think more importantly than consulting a surgeon at this stage would be getting an independent assessment of the size (in all three dimensions) of the five MRI images. I've sent you a PM on one way of doing this.
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No, my first MRI was prescribed by my ear doctor. When I described my unilateral hearing loss, he said he suspected it might be a tumor and sent me for an MRI. The second MRI was ordered by Dr. John Roland of NYU Langone. Contacting him for results took forever so for my subsequent MRIs, I asked my PCP to prescribe them. I haven't tried looking at my MRIs yet (I may still do so) and I'm afraid I may misinterpret them and see an increase in size other than what was noted on the radiological report. As to your question, Dr. Roland works in conjunction with Dr. John Golfinos who does do acoustic neuroma surgery. As you in the New York area, too? I am very wary and reluctant to see a neurosurgeon on September 12th and would like to find a doctor who tends to be more conservative. My PCP said he can send me to someone for a second, or even third opinion. I may just ask him for the name of a conservative neurologist and try and make an appointment with him. My PCP is away on vacation so I can't do anything until after August 21st.
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Carol, you should look at your MRIs. Don't worry about misinterpret them. You can always send me an image of the largest "slice" and I can double check your interpretation. Didn't quite catch if Dr Roland does do surgery.
I'm from Sydney, Australia.
As far as a doctor that is more conservative, Dr Michael McKenna may be a good choice. You can watch a video by him at https://www.anausa.org/resources/videos/support-group-video-library. He's at Massachusetts Eye and Ear Infirmary. He appears to be conservative and is reasonably local.
It's look like your PCP is looking after you. Keep seeing specialists until one agrees to look after you conservatively. In Denmark, 95% of tumors under 2 cm in diameter are conservatively managed. Meningiomas may be different to acoustic neuromas and I don't know enough about meningiomas to comment on the difference.
Above all, relax. Get another MRI in six months if you are concerned.
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Just a brief update. I was told that my PCP cannot look at CDs of my MRI's and that I would have to see a specialist so I guess I'll be keeping my September 12 appointment with Dr. Golfinos. I was told, however, that Dr. Roland (Dr. Golfinois' partner) did look at all of my radiological reports and, because I am asymptomatic, did not feel that Dr. Golfinos would recommend surgery or radiation. They may want to repeat my MRI in six months but I can live with that. Dr. Roland did say that the increase in size was not really that significant.
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Carolgre,,
Sounds like a good plan!
It's encouraging that Dr Roland looked at the reports and gave you an indication of what Dr Golfinos would recommend. At least you can go to the appointment feeling as if he will agree with your desire not to treat at this time. But it will be a second opinion from a qualified source.
Then if you feel like you want to send your MRI disks to House clinic in LA, CA,, for another qualified source,, you could do that also. I know there are others who will give a phone consult from your MRI disks,,,, these are very good sources for second and third opinions of your situation. All it takes is for you to gather the latest MRI and report and send it to them, then one of the Doctors will call to discuss your options in their opinion,,, I sent mine to House and had a wonderful call but could not ultimately go out there. But great info!!
But looks like you are getting a good start on proceeding to the correct conclusion for you!!
Best of luck!!
Jane
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Wonder why your PCP cannot look at CDs of your MRIs. Others on here have no trouble. Is it because your CD does not come with a viewer (most CDs come with the viewer and they are freely available on the web) or your PCP cannot devote quite a bit of time to look at the images. Still think its a good idea to try to take a look at the MRI images to get a better feel.
Great news that the preliminary thoughts are that since you are asymptotic and the increase in size was not really that significant that conservative management is the way to go.
Be careful on relying on radiological reports. Many people have reported errors, including myself. When it comes to size, the best indicator is not a report but an independent measurement, by someone that will not treat you.
Good luck with your MRI in "6 months time".