Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Discuss conventional brain surgery here.

I have twice gone through brain surgery in the last year, each time one tumor was resected, from either side of my head. The mets were small, 1cm-0.5cm in diameter, however I suffered from dizzyness and headaches respectively. I also had a short time on steroids for both treatments. If anyone is facing the same surgery please feel free to contact me for answers/advice/support. We are all getting used to the new website I think and I for one have decided to make a concerted effort to step up my use I found the surgery fine to deal with, I was in and out of hospital in 3 1/2 days the most recent time! And recovery has been fine. I know others have been through the same thing and may have advice to give about post-surgery radiation therapy (I am opting out so far), my e-mail is mavs_1357@hotmail.com if anyone wants to get in touch.

Hi Paul, I wanted to ask how did you find out your brain mets - by the scanning or by the symtoms. My concern is that my son's (Ivan) doctor here in Vancouver doesn't think that brain MRI has to be performed ofthen then once a year so I am affraid to miss the brain mets when they are still small and can be easily resected. I though that the small brain mets are assymtomatic but from what you are saying it is not the case. Can you comment more on the symptoms and how often you brain was scanned before of the surgeries and now. Did they find only one spot every time?

Great comments, Olga. I consistently ask my son's doctors about brain mets and whether he should have an MRI as a followup protocol. Especially, since his primary tumor was on the scalp! His doctor consistently asks Sean whether he physically "feels" a lump and Sean has a comprehensive "hand-on" physical by his doctors every three months. I think the reason that there has been no MRI of the head ordered is that false positives can appear, that there is tremendous stress associated with extensive testing, there are costs asssociated with the testing, and that his doctor really doesn't think it is necessary at this time. I only push so far with his doctors. His doctor also said that PET scans are unreliable for ASPS under 5mm. I have to say with Sean's hospitalization in May, 2006 that his oncologist, Dr. Paul Meyers, Sloan Kettering, NYC, NY was a consistent "voice of reason," he did not jump to conclusions. The oncological, surgical team believed that Sean's lung collapsing was due to enlargement of ASPS mets between his lung and plurera(?)(the balloon around the lung). Dr. Meyers continuously stated that there was absolutely NO evidence to suggest the collapse was due to ASPS mets enlarging, and that the cause could truly be a spontaneous pneumothorax for a very thin, active, teenage boy. No ASPS mets were found even with several biopsies using an MRI during the open thoracotomy to repair his left lung. We are truly Thankful! I hope this information helps others.
Sincerely,
Elaine Anderson
Unionville, PA, USA

I had been requesting MRI's for the brain every 6 months and it wasn't until my 4th MRI that the images came up with 4 brain mets. After going for a second opinion in Toronto which used a better quality MRI machine I was told the 4th spot was not a brain met. Its important that the Doctor SEE the images , not just read the report from the radiologist because there can be discrepancies there as well.

Olga, thanks for the questions. By assymtomatic I am presuming it means showing no symptoms. With my first met (in march/april this year) I was going dizzy, for no reason. Often when I stood up, which is understandeble, but occasionaly for seemingly no reason, for example when I would be walking down the street or doing anything that one would just consider normal activity. I didn't rush to any conclusions but this carried on for one/two weeks. The dizzyness wasn't excessive but was noticable. I bought this up with my doctors (I was on a drug trial at the time) and asked for a MRI scan which was dismissed immediately. The dizzyness carried on so I pushed for a scan. It was suggested it was not necessary again (I think with the NHS it is a cost thing) I didn't think I was being treated fairly, I demanded one in the end, 'just to set my mind at ease'. By this point I was fairly convinced there was nothing wrong. (My oncologist who is the leading sarcoma expert in the UK said it wouldn't have spread to the brain yet!) However one met was found, about 1cm in diameter. Because I was getting dizzyness it was taken out very quickly, within 3/4 days I was in hospital. With the most recent met (a month ago) it was found using 2 monthly ct scans to the brain. I was showing no symptoms so it was left, however I was soon getting dull, long-lasting headaches, as soon as I showed these symptoms it was taken out staright away again, two days after I told the doctors about the headaches. It was on the opposite side as the first on (the left), it was half the size, and both were on the periphary of the brain, which made resection less difficult. Sorry I haven't been that lucid in my explanation, I hope all the info is there, again please ask any more questions if anyone wants any info on any aspect of what I've gone through, either here or e-mail me if people prefer privacy on mavs_1357@hotmail.com