Can Anyone help me understand these findings?

sadinholland

My husband had his MRI in December and they told us everything was the same as the last MRI. The report wasn't ready so we had to return later to pick it up. When I read the MRI it said some pretty disturbing things, to me anyway. Although it says findings reflect post operative and or post therapy changes, it also said this: there has been some mild interval evolution of the signal characteristics and residual tumor in this area cannot absolutely be excluded. Focal encephalomalacia with mixed signal characters within the right medial lparietal lobe with relitave linear appearing enhancement, potential residual/recurrent tumor in this area cannot be excluded.Increased T2 signal identified within the left frontal,parietal, and occipital white matter,findings also involve portions of the posterior temporal white matter, potential nonenhancing tumor in this region cannot be excluded. Overall abnormalities is unchanged since last exam.

I read the MRI from the last exam and there was nothing in it about cannont rule out recurrent or possibility of a tumor. Not one place in his report mentioned anything like that. If there is anyone who is able to help me understand these results, it would be appreciated. I asked his doctor and he said everything is fine, there is nothing to worry about but his report, to me, reads as if there could be possibly 3 tumors growing. Help me if you can please.

cindysuetoyou

ambiguous....
I've had to read reports like this with a dictionary open so I could look up every other word. If I had to guess, i would say that it sounds like they are seeing stuff and they don't know for sure what it is. My son's first MRI report after radiation had some ambiguous wording like this too. Did your husband have radiation? I know that radiation can show as enhancement on an MRI. Also fluid retention could show as enhancement. Our son had scar tissue or calcification or something that showed as an enhanced area for a long time. They never knew for sure what it was. It just slowly went away.

Could you call your NO and read each confusing sentence to him and ask him to explain what it means? Could you ask him what it means when the report says that residual/recurrent tumor could be present? Sometimes I think you have to pin them to the wall to get them to explain things, using words a layman can understand. Personally, I feel like they absolutely owe us an explanation and they owe it to us to put it in words that we can understand.

Please let us know if you find out more information about this report.

Love and blessings, always!
Cindy in Salem, OR

sadinholland

cindysuetoyou said:

ambiguous....
I've had to read reports like this with a dictionary open so I could look up every other word. If I had to guess, i would say that it sounds like they are seeing stuff and they don't know for sure what it is. My son's first MRI report after radiation had some ambiguous wording like this too. Did your husband have radiation? I know that radiation can show as enhancement on an MRI. Also fluid retention could show as enhancement. Our son had scar tissue or calcification or something that showed as an enhanced area for a long time. They never knew for sure what it was. It just slowly went away.

Could you call your NO and read each confusing sentence to him and ask him to explain what it means? Could you ask him what it means when the report says that residual/recurrent tumor could be present? Sometimes I think you have to pin them to the wall to get them to explain things, using words a layman can understand. Personally, I feel like they absolutely owe us an explanation and they owe it to us to put it in words that we can understand.

Please let us know if you find out more information about this report.

Love and blessings, always!
Cindy in Salem, OR

Thank you. I did ask my
Thank you. I did ask my husband's NO to explain and all he said was don't worry, enjoy your Christmas, nothing has changed. I can't call his doctor back because my husband doesn't want me to. My husband did have radiation after his surgery in July 2010. He does appear to be okay. I just need to trust that he is doing fine and not let it worry me so much. I am just so so scared of what MIGHT happen. I have been having trouble coping lately. It's really strange, things seem to be going good but I seem to be worrying more and more everyday.

survivormannc

Every single time I have
Every single time I have gotten an MRI and the results back there is always wording in the report saying words like "potential" and "cannot be excluded". From my experience and after talking to my neurologist about this if the doctor says he is fine, you should believe him. This is essentially a way for the hospital to cover itself. Since they cannot look directly at each cell they in reality have no way to know exactly. If they were to say he is fine and you didn't go to have a check up MRI the next year and it came back you could potentially sue for malpractice. During post op MRI's you do get a lot "enhancement" due to the scar tissue swelling around the surgical area, this is perfectly normal. This also makes it hard to tell from their point of view from the MRI.

Hope this helps you to feel better!

sadinholland

survivormannc said:

Every single time I have
Every single time I have gotten an MRI and the results back there is always wording in the report saying words like "potential" and "cannot be excluded". From my experience and after talking to my neurologist about this if the doctor says he is fine, you should believe him. This is essentially a way for the hospital to cover itself. Since they cannot look directly at each cell they in reality have no way to know exactly. If they were to say he is fine and you didn't go to have a check up MRI the next year and it came back you could potentially sue for malpractice. During post op MRI's you do get a lot "enhancement" due to the scar tissue swelling around the surgical area, this is perfectly normal. This also makes it hard to tell from their point of view from the MRI.

Hope this helps you to feel better!

Thank you Survivormannc!
Thank you Survivormannc! That makes me feel so much better and it makes so much sense. I am trying to maintain a positive attitude. I'm not going to read so much into the wording of the MRI anymore. It makes me crazy. Thanks for taking the time and responding to my question. I really appreciate it.

mb1234

MRI report
Hey sadinholland,

I am a new resident, and I may be able to help you comprehend these findings. High signal on MRI means something is bright. MRI is complex but low signal appears dark, and high signal appears bright. Different diseases can appear bright or dark within the brain.

The biggest issue with Radiology is that we can never fully guarantee every single thing we see, because at times, it can be confused with other things. For instance, after patients have radiation to the brain, it can cause something known as necrosis and fibrosis, which happens after tumor cells die, and the brain heals itself. Sometimes regrowth of a tumor can be confused with old dying cells, because they may look exactly alike, and we can't tell until another MRI is done at a later date.

This does not necessarily mean that there are three new areas growing, it just means that it is a possibility. Unfortunately, no study is perfect and when things are too small, it is just too difficult to tell.

I think that since they said overall abnormalities are unchanged, the Radiologist believes the past scan and this scan are about the same. And, if something is growing, then a later MRI would show it better because the small changes they can see can be tumor or necrosis or a variety of other things.

I hope this helps clear things up a bit.

And, I really hope your husband does well. Please try to search for some good clinical trials that show some promise, without many reported side effects, it may help.

And I wish you the best in these trying times

mb1234

mb1234 said:

MRI report
Hey sadinholland,

I am a new resident, and I may be able to help you comprehend these findings. High signal on MRI means something is bright. MRI is complex but low signal appears dark, and high signal appears bright. Different diseases can appear bright or dark within the brain.

The biggest issue with Radiology is that we can never fully guarantee every single thing we see, because at times, it can be confused with other things. For instance, after patients have radiation to the brain, it can cause something known as necrosis and fibrosis, which happens after tumor cells die, and the brain heals itself. Sometimes regrowth of a tumor can be confused with old dying cells, because they may look exactly alike, and we can't tell until another MRI is done at a later date.

This does not necessarily mean that there are three new areas growing, it just means that it is a possibility. Unfortunately, no study is perfect and when things are too small, it is just too difficult to tell.

I think that since they said overall abnormalities are unchanged, the Radiologist believes the past scan and this scan are about the same. And, if something is growing, then a later MRI would show it better because the small changes they can see can be tumor or necrosis or a variety of other things.

I hope this helps clear things up a bit.

And, I really hope your husband does well. Please try to search for some good clinical trials that show some promise, without many reported side effects, it may help.

And I wish you the best in these trying times

one last thing

I think it is absolutely great that you are doing everything you can to find out all the information you can. Education is a great way to help make decisions you and your husband are comfortable with. If you have medical questions, you can post them, and I will try to reply to them as much as I can.

sadinholland

mb1234 said:

one last thing

I think it is absolutely great that you are doing everything you can to find out all the information you can. Education is a great way to help make decisions you and your husband are comfortable with. If you have medical questions, you can post them, and I will try to reply to them as much as I can.

mb1234
I really appreciate you explaining the findings from my husband's mri. Thank you and I will definitely post if I have more questions. Thank you for the offer. I am constantly trying to educate myself regarding his health issues and I learn a lot from this site.

sadinholland

mb1234 said:

one last thing

I think it is absolutely great that you are doing everything you can to find out all the information you can. Education is a great way to help make decisions you and your husband are comfortable with. If you have medical questions, you can post them, and I will try to reply to them as much as I can.

T

T

connsteele

mb1234 said:

MRI report
Hey sadinholland,

I am a new resident, and I may be able to help you comprehend these findings. High signal on MRI means something is bright. MRI is complex but low signal appears dark, and high signal appears bright. Different diseases can appear bright or dark within the brain.

The biggest issue with Radiology is that we can never fully guarantee every single thing we see, because at times, it can be confused with other things. For instance, after patients have radiation to the brain, it can cause something known as necrosis and fibrosis, which happens after tumor cells die, and the brain heals itself. Sometimes regrowth of a tumor can be confused with old dying cells, because they may look exactly alike, and we can't tell until another MRI is done at a later date.

This does not necessarily mean that there are three new areas growing, it just means that it is a possibility. Unfortunately, no study is perfect and when things are too small, it is just too difficult to tell.

I think that since they said overall abnormalities are unchanged, the Radiologist believes the past scan and this scan are about the same. And, if something is growing, then a later MRI would show it better because the small changes they can see can be tumor or necrosis or a variety of other things.

I hope this helps clear things up a bit.

And, I really hope your husband does well. Please try to search for some good clinical trials that show some promise, without many reported side effects, it may help.

And I wish you the best in these trying times

Getting copy of test results
mb12334 and sadinholland: I makes me rather angry when a doctor brushes a patient (or the caregiver) off when asked for a more detailed explanation of test results. Is it because the doc doesn't really know hiself?

For me, this brings up the question: ethically, how forthcoming should a doctor be in giving detailed information about tests to the patient/caregiver, especially when pressed for answers? And how much do we, as nonmedical people need to know about every detail of a medical test? Guess it comes down to trusting your NO.

Our son (age 34, dx 4-13-11, AA3, inoperable) was first treated in Virginia, where he had his surgical biopsy and radiation. When he had to move back home with us in Ohio, we got copies of his medical records, which we hadn't seen until then. That's when we learned that his chemo and radiation docs were considering stopping his radiation and referring him to hospice because he got so bad on the radiation (they couldn't tell if his "deterioration" was due to radiation or tumor progression).

On one hand, I feel like we should have been told this. On the other hand, it would have only increased the extreme stress we were under at the time.

(BTW: He was put on high dose decadron, and he had some improvement, so that answered that question.)

Although we are our son's primary caregivers (my husband has power of attorney and medical power), our son's NO won't talk with us about his prognosis and timeline without him present. But our son won't ask the questions (sometimes I think he doesn't fully understand his situation or else just doesn't want to know). But I do.

I have asked some pointed questions when we were all in clinic, but the NO was very vague. I'm thinking it was because the questions came from me and not our son.

Sometimes I think this whole "privacy" thing is overdone. When he was in the hospital, you'd see all the time, a doctor talking with the patient's family outside in the hallway. How is that different than our son's NO talking with us frankly without him present?

bm1234: as an MD, how do you handle that kind of situation? Thanks for taking time to post to this site.

sadinholland

connsteele said:

Getting copy of test results
mb12334 and sadinholland: I makes me rather angry when a doctor brushes a patient (or the caregiver) off when asked for a more detailed explanation of test results. Is it because the doc doesn't really know hiself?

For me, this brings up the question: ethically, how forthcoming should a doctor be in giving detailed information about tests to the patient/caregiver, especially when pressed for answers? And how much do we, as nonmedical people need to know about every detail of a medical test? Guess it comes down to trusting your NO.

Our son (age 34, dx 4-13-11, AA3, inoperable) was first treated in Virginia, where he had his surgical biopsy and radiation. When he had to move back home with us in Ohio, we got copies of his medical records, which we hadn't seen until then. That's when we learned that his chemo and radiation docs were considering stopping his radiation and referring him to hospice because he got so bad on the radiation (they couldn't tell if his "deterioration" was due to radiation or tumor progression).

On one hand, I feel like we should have been told this. On the other hand, it would have only increased the extreme stress we were under at the time.

(BTW: He was put on high dose decadron, and he had some improvement, so that answered that question.)

Although we are our son's primary caregivers (my husband has power of attorney and medical power), our son's NO won't talk with us about his prognosis and timeline without him present. But our son won't ask the questions (sometimes I think he doesn't fully understand his situation or else just doesn't want to know). But I do.

I have asked some pointed questions when we were all in clinic, but the NO was very vague. I'm thinking it was because the questions came from me and not our son.

Sometimes I think this whole "privacy" thing is overdone. When he was in the hospital, you'd see all the time, a doctor talking with the patient's family outside in the hallway. How is that different than our son's NO talking with us frankly without him present?

bm1234: as an MD, how do you handle that kind of situation? Thanks for taking time to post to this site.

Connsteele,
I have the same
Connsteele,
I have the same question about the doctors being upfront when giving test results. Although it would be difficult to hear if there is something more going on, I would rather know now that something may be developing. I do understand they have to be very careful in what they say but please please please! be upfront.

I often reaad your post along with Cindy's post. Both of you are so knowledgeable regarding your sons'. My heart aches for both of you, as well as all the others on this site. Our children are so dear to our hearts. I pray for everyone on this site. Thank you for taking the time to read and respond to my post. It is overwhelming that people care enough to take the time out to read my concerns when they have so much going on in their own lives. Thanks for caring! God Bless!