Bill Posted September 30, 2004 Share Posted September 30, 2004 Here are the verbatim findings of my wife's brain MRI that the med onc was looking right at when he told us " No brain tumors, just that one outside of the brain ( on the inner surface of the skull ) that we already know about ". I'm admittedly a little rusty on my human anatomy so you tell me. Is he correct or is it time for us to start looking for another med onc ? : " There is bone destructive lesion in the left parietal calvarium. There is densely enhancing 1.2 cm. tumor in the left frontal cortex, a 1 cm. ring enhancing nodule in the right lateral cerebellar hemisphere. Associated vasogenic edema is minimal. There is mild ventriculomegaly and periventricular high intensity foci, which may be ischemic. Communicating hydrocephalus is less likely. " ( end ) Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 30, 2004 Share Posted September 30, 2004 Sounds right to me. There are no brain mets, but a met to the skull, which would be a bone met. My wife had one of those in addition to other bone mets. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 30, 2004 Share Posted September 30, 2004 Ummm.....1.2 cm enhancing tumor in frontal cortex and 1cm ring enhancing nodule in cerebellum would be 2 brain mets. Not sure how else he could be interpretting that scan. Quote Link to comment Share on other sites More sharing options...
Bill Posted September 30, 2004 Author Share Posted September 30, 2004 oncodoc Posted: Wed Sep 29, 2004 9:20 pm Post subject: -------------------------------------------------------------------------------- Ummm.....1.2 cm enhancing tumor in frontal cortex and 1cm ring enhancing nodule in cerebellum would be 2 brain mets. Not sure how else he could be interpretting that scan. /////////////// Thanks. I'd appreciate one follow-up for clarification. Is the frontal cortex tumor that's described the tumor that's on the inner surface of the skull or is that a separate tumor in the brain ? Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 1, 2004 Share Posted October 1, 2004 That sounds like a seperate tumor, the frontal cortex is anterior to the parietal cortex. Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 oncodoc Posted: Thu Sep 30, 2004 8:27 pm Post subject: -------------------------------------------------------------------------------- That sounds like a seperate tumor, the frontal cortex is anterior to the parietal cortex. ////////////////// Thanks. Looks like Dr. Joe is right. A quick review of my wife's previous two brain MRI reports mentions a tumor in the " left ( superior ) frontal region ". My wife's med onc has obviously made a major gaffe with his " no brain tumors " comment. This was really off the wall. We don't know what he was thinking. Some kind of brain F### ? Assuming that this latest brain MRI radiology report didn't miss anything my wife currently has two brain tumors and a suspect area in the periventricular region of her brain plus the tumor on the inner surface of her skull. It looks like a slight improvement vs. the previous report. Her radiation oncologist and neurosurgeon will be reviewing a stack of her MRIs and CT scans tomorrow in an attempt to get a handle on her condition, esp. the brain, spine and lungs. Another nerve-racking day ! My wife wishes that Dr. Joe was local ! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 1, 2004 Share Posted October 1, 2004 Bill, I am sorry you have to go through this misinformation nonsense. Makes a not good thing certainly worse. I wish your wife well in her tests, and hope for the best. Hang in there. Your love for your wife is evident in your assertive supporting. XOXOXOXOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Elaine Posted October 1, 2004 Share Posted October 1, 2004 Excuse me for being dense, but are you saying Bill, that your wife had brain mets evident on previous MRIs also? And that one improved since then? He might have went to school with my onc. Once I called him about headaches I was having. I was told that it doesn't matter and not treat brain mets until they were causing symptoms! I said, well wouldn't a headache be a symptom!!!!! Now you see what I mean about MY onc. Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 Excuse me for being dense, but are you saying Bill, that your wife had brain mets evident on previous MRIs also? And that one improved since then? He might have went to school with my onc. Once I called him about headaches I was having. I was told that it doesn't matter and not treat brain mets until they were causing symptoms! I said, well wouldn't a headache be a symptom!!!!! Now you see what I mean about MY onc. //////////////// Yes, all of my wife's brain MRIs since DX have revealed brain mets. IMO the latest MRI scan report is poorly written and lacks detail. When I say that her current MRI scan appears to show slight improvement I'm basing that mainly on the report mentioning one less tumor. But, my confidence level in this isn't high. Today, hopefully, her rad onc will clear this up and give us the bottom line. He will read right off of the films and ignore the radiology reports for the most part. He must convince us that the med onc is doing a good job or we start looking for a new med onc. IMO your frustration and comments over the ( poor ) quality of medical care is right on. Since my wife's DX I've seen one blunder after another. And, not just with my wife's healthcare. I've seen some real humdingers involving other patients as well both at the clinic level and the hospital. Quote Link to comment Share on other sites More sharing options...
Eileen Posted October 1, 2004 Share Posted October 1, 2004 Bill my surgeon (who I still see for check-ups--he is an amazing, amazing person)---always insists on reading the pictures---a good thing too , because some of the ones I have read myself , they made it sound like I had hours to live-- they made some big mistakes--like "cannot compare scans, last one was taken with contrast" well it was not!!--- indicates an upper right lobectomy---(this was on my last report---I have only had my lobectomy for 4 1/2 years and go to the same place every time, and this is the first time it was mentioned) then a little spot that they say "indicates Metastic cancer" is gone the next time---also the scar tissue , they make it sound like I have a huge tumor there--- I hope your rad onc clears up everything for you and your wife--It is horrible that you and your wife have to go through this- how frustrating regards. Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 EILEEN Posted: Fri Oct 01, 2004 11:39 am Post subject: -------------------------------------------------------------------------------- Bill my surgeon (who I still see for check-ups--he is an amazing, amazing person)---always insists on reading the pictures---a good thing too , because some of the ones I have read myself , they made it sound like I had hours to live-- they made some big mistakes--like "cannot compare scans, last one was taken with contrast" well it was not!!--- ////////////////// Ditto my wife's neurosurgeon. BTW, following my wife's neurosurgery and a stay in ICU she was transferred to the surgical floor where her DIABETIC roommate received her meals for two days. Only after my wife complained about the bland meals did the nursing staff discover their mistake. Last time I saw the roommate she was violently ill then disappeared. Quote Link to comment Share on other sites More sharing options...
Elaine Posted October 1, 2004 Share Posted October 1, 2004 What killed the brain tumors. Did she have WBR? I guess I didn't remember that. elaine Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 What killed the brain tumors. Did she have WBR? I guess I didn't remember that.elaine //////////////// If your question is directed to me the only tx that my wife has had to the brain is WBR. Only one of the tumors is dead. The others, not to be called tumors ( unless they start growing ), have shrunk to some degree. If you don't mind I will continue to refer to them as tumors. This from the " No Spin " zone ! Quote Link to comment Share on other sites More sharing options...
Elaine Posted October 1, 2004 Share Posted October 1, 2004 Yes, Bill. I guess I didn't know she had WBR and was wondering what chemo was working on the brain. I had been wrongly thinking she had had brain mets all along and HAD NOT been treated for them at all. Well, at least they did treat them. elaine Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 Elaine Posted: Fri Oct 01, 2004 2:57 pm Post subject: -------------------------------------------------------------------------------- Yes, Bill. I guess I didn't know she had WBR and was wondering what chemo was working on the brain. I had been wrongly thinking she had had brain mets all along and HAD NOT been treated for them at all. Well, at least they did treat them. elaine ////////////////// E : She had WBR and lower spine radiation in late May / early June. That's it. Since then 4 cycles of chemo completed ( Gemzar / carboplatin ). IMO the chemo hasn't done much. The rad onc calls her OVERALL condition " stable " which equates to improvement. His words not mine. Quote Link to comment Share on other sites More sharing options...
Elaine Posted October 1, 2004 Share Posted October 1, 2004 Please tell me to butt out if you don't want to answer this question. But what is her what they call "performance status"? Has it improved, remained stable or gotten progressively worse? If it has or is improving, then I think that would be something to consider as being "improving." Like I said, if I am being too nosy, just tell me. elaine Quote Link to comment Share on other sites More sharing options...
Bill Posted October 1, 2004 Author Share Posted October 1, 2004 Please tell me to butt out if you don't want to answer this question. But what is her what they call "performance status"? Has it improved, remained stable or gotten progressively worse? Like I said, if I am being too nosy, just tell me. elaine ////////////////// I don't mind the question but I'm not familiar with the term so I can't answer. BTW, my wife has extensive metastases throughout her body. Some damage is old, some is new. BUT, if you had to point to something that makes her " Lucky " I'd say location of metastases UP TILL NOW. Without the spine surgery she would be paralyzed by now. But, other than that and chronic pain, she has escaped major health problems due to her cancer. I sympathize with those individuals that have tumors in critical / life threatening locations. Quote Link to comment Share on other sites More sharing options...
Elaine Posted October 1, 2004 Share Posted October 1, 2004 Basically, Bill, it just is a measurement as to a person's ability to carry on with normal activity. Here is a link http://www.fda.gov/cder/cancer/perstatframe.htm Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 2, 2004 Share Posted October 2, 2004 Bill, I am sorry to hear you have been getting misinformation (?) from your wifes Onc. I was told I had 2 brain tumors when I actually had the met to my sinus which I am currently fighting. That is the only misinformation/diagnosis I have gotten from my Onc. although if I was not getting clear, easily understandable and correct information on multiple instances I would definitely be looking for another Onc. . I believe having a good relationship with your Onc. and being able to trust him/her is vital for your ability to fight. David C Quote Link to comment Share on other sites More sharing options...
Bill Posted October 2, 2004 Author Share Posted October 2, 2004 Bill, I am sorry to hear you have been getting misinformation (?) from your wifes Onc. I was told I had 2 brain tumors when I actually had the met to my sinus which I am currently fighting. That is the only misinformation/diagnosis I have gotten from my Onc. although if I was not getting clear, easily understandable and correct information on multiple instances I would definitely be looking for another Onc. . I believe having a good relationship with your Onc. and being able to trust him/her is vital for your ability to fight.David C ///////////////// Thanks. IMO there is too much ( tumor ) spin and use of the word " stable " when these treating physicians evaluate my wife's cancer status. We want straight forward answers and progress reports which seem to be very difficult to get. I can see that a liability concern has surfaced also. This week for the first time my wife's rad onc admitted that her condition is very complex and evaluation of her spine is beyond his capability. Therefore, other than a read of her current films he didn't feel comfortable making any comments or comparisons about her progress or lack of. He tossed the ball ( or maybe hot potatoe ? ) to the neurosurgeon who reported back with that useful word " stable ". Quote Link to comment Share on other sites More sharing options...
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