Worried about slight increase in size

[Carolgre]

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.

[ANSydney]

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.

[Carolgre]

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.

[alabamajane]

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

[ANSydney]

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.

[Carolgre]

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.

[ANSydney]

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.)

[Carolgre]

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.

[Sheryl]

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

[Carolgre]

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.

[ANSydney]

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?

[Carolgre]

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.

[ANSydney]

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.

[ANSydney]

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

[Carolgre]

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.