› Forums › General Melanoma Community › can’t they make up their minds?
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DZnDef.
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- October 4, 2014 at 1:08 pm
I feel like a yoyo these days. I finally got the path report (last week) from the mass they removed from my brain about 2 weeks ago: all radiation necrosis- no live cells.
In some ways that's great- better than having active disease! But now they can't seem to decide what to do with me. Pre-surgery the plan was to give me about 3 weeks to heal after the surgery then bring me back for gamma knife to the surgical area and a few other spots that were seen on the MRI in non surgically accessible areas. That was fine, but with the path report now they're concerned that perhaps that's not the best course of action given that what they took out was radiation necrosis. If the other spots are as well then more radiation is NOT good. I feel like I'm being tugged back and forth between some who still think I should get a gamma knife and those who don't. To be honest, not that gamma knife is such a big deal, but if I didn't have to do it, I'd be perfectly happy.
At the moment the plan is for me to go back to the hospital where the surgery was done (Roswell Park in Buffalo, NY) on Monday for a follow up MRI. If things look at least stable, no gamma knife. If there's growth or anything new- the conversation starts all over again. I'm really hoping things are stable and I (and my husband) can get a break from all travel and doctors stuff. I'm still not cleared to drive myself after the surgery (even though I never had any symptoms of any kind pre or post surgery and have been back to work full time this past week). Having another gamma knife would delay that clearance for sure.
I'm happily off all medications except the anti-seizure, which I suspect will continue for at least a few more weeks.
On the bright side- I got my first dose of the now FDA approved PD-1 here locally yesterday! So excited to be back on that and to not have to drive over 6 hrs to get it! Even with the surgery I'm really not even off schedule with it (maybe a couple of days as I used to get them on Mondays and this one was on a Friday). Super excited I can get it at home now. Yesterday was dose number 6!
Wishing everyone out there all the best as you do battle with this horrible disease. Hold on to hope and remind yourself that it's becoming more managable every day- I am now almost 3 years since progressing to stage IV, and 2 years and 3 months since my first brain mets. I've been through every FDA approved therapy (currently on the Merk PD-1) had whole brain radiation, 2 (possibly soon to be 3) rounds of gamma knife, and a craniotomy for brain mets and I'm still here! You can do this, it may seem like an impossibility, but you can do this! If I can, you can
-Eva
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- October 4, 2014 at 7:41 pm
Hi Eva,
Sounds very frustrating. Could be a ripe time for a second opinion (?) Despite it being more travel. Don't know how accruate a list like this could actually be, but my facility is listed at #5.
For me at one point they were trying to decide if something on the MRI was radiation effect (not sure if that's the same as necrosis — maybe not?) and they did another MRI "with perfusion/blood volume study" for a couple of particular areas — the perfusion helped them understand if there were new blood vessels in those areas or not. They decided "not" for me. Don't know if that would be useful in determining if something was radiation necrosis.Agree things can be better these days. Knock on wood it's been 4 years and 4 days since my first neurosurgery. I'm on PD1 now too.Good luck next week!– Kyle-
- October 4, 2014 at 8:22 pm
Hi Kyle (and Eva, of course)… yes, I've heard "radiation necrosis" and "radiation effect" both used to describe the same thing, along with "radiation injury" — they definitely sound like different things of varying severity, and frankly "necrosis", at least for me takes on a zombie apocalypse tone that I prefer not to consider when talking about my own brain.
There are some PET techniques and other MRI studies that can sometimes be used, but apparently the accuracy is pretty low. At least that's what I've been told, and tried to verify in my own research (I'm also dealing with what is believed to be RN, posts elsewhere on the forum). But from your experience, it sounds like there could be some value in exploring these techniques further. Especially given the possibility of there being a mix of tumor and RN, so even a needle biopsy that's slightly less invasive than a larger craniotomy runs the risk of not fully diagnosing what's occurring.
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- October 4, 2014 at 8:22 pm
Hi Kyle (and Eva, of course)… yes, I've heard "radiation necrosis" and "radiation effect" both used to describe the same thing, along with "radiation injury" — they definitely sound like different things of varying severity, and frankly "necrosis", at least for me takes on a zombie apocalypse tone that I prefer not to consider when talking about my own brain.
There are some PET techniques and other MRI studies that can sometimes be used, but apparently the accuracy is pretty low. At least that's what I've been told, and tried to verify in my own research (I'm also dealing with what is believed to be RN, posts elsewhere on the forum). But from your experience, it sounds like there could be some value in exploring these techniques further. Especially given the possibility of there being a mix of tumor and RN, so even a needle biopsy that's slightly less invasive than a larger craniotomy runs the risk of not fully diagnosing what's occurring.
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- October 4, 2014 at 8:22 pm
Hi Kyle (and Eva, of course)… yes, I've heard "radiation necrosis" and "radiation effect" both used to describe the same thing, along with "radiation injury" — they definitely sound like different things of varying severity, and frankly "necrosis", at least for me takes on a zombie apocalypse tone that I prefer not to consider when talking about my own brain.
There are some PET techniques and other MRI studies that can sometimes be used, but apparently the accuracy is pretty low. At least that's what I've been told, and tried to verify in my own research (I'm also dealing with what is believed to be RN, posts elsewhere on the forum). But from your experience, it sounds like there could be some value in exploring these techniques further. Especially given the possibility of there being a mix of tumor and RN, so even a needle biopsy that's slightly less invasive than a larger craniotomy runs the risk of not fully diagnosing what's occurring.
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- October 5, 2014 at 5:37 pm
Joey, Eva,
I also remember my radiation onc saying that the suspicious areas on my scans were ones particularly prone to radiation effect – so location apparently factors in?
Also, I didnt know RE was the same as radionecrisis which means that I experienced that I guess.
Eva, I don'twant to try to second guess your docs, just sharing my experiences in my own unique case. Don't know if any other imaging techniques would help. If my docs were confused though I would look for the best second opinion I could fimd. Like you I wouldn't want to undergo unnecessary treatment, nor forego it if the odds were that it might be helpful. But I do think my own docs like yours were dealing with odds, not certainty.
Good luck tomorrow!
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- October 5, 2014 at 5:37 pm
Joey, Eva,
I also remember my radiation onc saying that the suspicious areas on my scans were ones particularly prone to radiation effect – so location apparently factors in?
Also, I didnt know RE was the same as radionecrisis which means that I experienced that I guess.
Eva, I don'twant to try to second guess your docs, just sharing my experiences in my own unique case. Don't know if any other imaging techniques would help. If my docs were confused though I would look for the best second opinion I could fimd. Like you I wouldn't want to undergo unnecessary treatment, nor forego it if the odds were that it might be helpful. But I do think my own docs like yours were dealing with odds, not certainty.
Good luck tomorrow!
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- October 5, 2014 at 5:37 pm
Joey, Eva,
I also remember my radiation onc saying that the suspicious areas on my scans were ones particularly prone to radiation effect – so location apparently factors in?
Also, I didnt know RE was the same as radionecrisis which means that I experienced that I guess.
Eva, I don'twant to try to second guess your docs, just sharing my experiences in my own unique case. Don't know if any other imaging techniques would help. If my docs were confused though I would look for the best second opinion I could fimd. Like you I wouldn't want to undergo unnecessary treatment, nor forego it if the odds were that it might be helpful. But I do think my own docs like yours were dealing with odds, not certainty.
Good luck tomorrow!
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- October 5, 2014 at 9:14 pm
My docs almost always refer to it as radiation necrosis, but have occasionally used "effect" or "injury" instead. That's far from a 100% answer, I know. Pathologically, there will always be some effect of radiation, that's the goal, right? And completely avoiding any damage to any healthy tissue is likely impossible, so there will always be some level of injury — the healthy tissue is better able to recover from that injury, though, which gives it the advantage over tumor tissue. That's the way it's supposed to work, at least.
Now, whenever I've had discussions about RN, the condition isn't typically referring to killed tumors soon after completion of radiation therapy. That's expected and desired. Radiate the tumor, kill the tumor, resulting in dead tumor cells that are eventually taken out with the proverbial trash or become inactive scar tissue. Clinically, RN is a later onset, often 6 months or more following completion of treatment, and isn't necrotic tumor, but an effect, or injury, to healthy tissue near the original treatment site.
I haven't heard that some areas of the brain are more prone to RN than others, but that could certainly be possible. I have been told and have read that there are no good predictors for who might develop RN, risk increases with total radiation dose, but is still very unpredictable. Some estimates say as high as 50% of those who receive some form of brain radiation will develop RN at some point, but that it is only diagnosed 10-15% of the time due to symptoms or scan findings, and for the other 35-40%, it resolves or stabilizes on its own, without symptoms.
Best, Joe
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- October 5, 2014 at 9:14 pm
My docs almost always refer to it as radiation necrosis, but have occasionally used "effect" or "injury" instead. That's far from a 100% answer, I know. Pathologically, there will always be some effect of radiation, that's the goal, right? And completely avoiding any damage to any healthy tissue is likely impossible, so there will always be some level of injury — the healthy tissue is better able to recover from that injury, though, which gives it the advantage over tumor tissue. That's the way it's supposed to work, at least.
Now, whenever I've had discussions about RN, the condition isn't typically referring to killed tumors soon after completion of radiation therapy. That's expected and desired. Radiate the tumor, kill the tumor, resulting in dead tumor cells that are eventually taken out with the proverbial trash or become inactive scar tissue. Clinically, RN is a later onset, often 6 months or more following completion of treatment, and isn't necrotic tumor, but an effect, or injury, to healthy tissue near the original treatment site.
I haven't heard that some areas of the brain are more prone to RN than others, but that could certainly be possible. I have been told and have read that there are no good predictors for who might develop RN, risk increases with total radiation dose, but is still very unpredictable. Some estimates say as high as 50% of those who receive some form of brain radiation will develop RN at some point, but that it is only diagnosed 10-15% of the time due to symptoms or scan findings, and for the other 35-40%, it resolves or stabilizes on its own, without symptoms.
Best, Joe
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- October 5, 2014 at 9:14 pm
My docs almost always refer to it as radiation necrosis, but have occasionally used "effect" or "injury" instead. That's far from a 100% answer, I know. Pathologically, there will always be some effect of radiation, that's the goal, right? And completely avoiding any damage to any healthy tissue is likely impossible, so there will always be some level of injury — the healthy tissue is better able to recover from that injury, though, which gives it the advantage over tumor tissue. That's the way it's supposed to work, at least.
Now, whenever I've had discussions about RN, the condition isn't typically referring to killed tumors soon after completion of radiation therapy. That's expected and desired. Radiate the tumor, kill the tumor, resulting in dead tumor cells that are eventually taken out with the proverbial trash or become inactive scar tissue. Clinically, RN is a later onset, often 6 months or more following completion of treatment, and isn't necrotic tumor, but an effect, or injury, to healthy tissue near the original treatment site.
I haven't heard that some areas of the brain are more prone to RN than others, but that could certainly be possible. I have been told and have read that there are no good predictors for who might develop RN, risk increases with total radiation dose, but is still very unpredictable. Some estimates say as high as 50% of those who receive some form of brain radiation will develop RN at some point, but that it is only diagnosed 10-15% of the time due to symptoms or scan findings, and for the other 35-40%, it resolves or stabilizes on its own, without symptoms.
Best, Joe
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- October 4, 2014 at 7:41 pm
Hi Eva,
Sounds very frustrating. Could be a ripe time for a second opinion (?) Despite it being more travel. Don't know how accruate a list like this could actually be, but my facility is listed at #5.
For me at one point they were trying to decide if something on the MRI was radiation effect (not sure if that's the same as necrosis — maybe not?) and they did another MRI "with perfusion/blood volume study" for a couple of particular areas — the perfusion helped them understand if there were new blood vessels in those areas or not. They decided "not" for me. Don't know if that would be useful in determining if something was radiation necrosis.Agree things can be better these days. Knock on wood it's been 4 years and 4 days since my first neurosurgery. I'm on PD1 now too.Good luck next week!– Kyle -
- October 4, 2014 at 7:41 pm
Hi Eva,
Sounds very frustrating. Could be a ripe time for a second opinion (?) Despite it being more travel. Don't know how accruate a list like this could actually be, but my facility is listed at #5.
For me at one point they were trying to decide if something on the MRI was radiation effect (not sure if that's the same as necrosis — maybe not?) and they did another MRI "with perfusion/blood volume study" for a couple of particular areas — the perfusion helped them understand if there were new blood vessels in those areas or not. They decided "not" for me. Don't know if that would be useful in determining if something was radiation necrosis.Agree things can be better these days. Knock on wood it's been 4 years and 4 days since my first neurosurgery. I'm on PD1 now too.Good luck next week!– Kyle -
- October 4, 2014 at 9:11 pm
Woohoo. You are already back on the pd1. That is awesome.
Artie
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- October 4, 2014 at 9:11 pm
Woohoo. You are already back on the pd1. That is awesome.
Artie
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- October 4, 2014 at 9:11 pm
Woohoo. You are already back on the pd1. That is awesome.
Artie
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- October 6, 2014 at 10:52 pm
Congratulations, Eva on their not finding active disease! That is HUGE! I appreciate your current conundrum, however, so I'm hoping the MRI shows everything is at least stable so you can "take a break" before deciding your next steps. These choices are so important, they deserve adequate reflection and consideration.
Be well,
Maggie
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- October 6, 2014 at 10:52 pm
Congratulations, Eva on their not finding active disease! That is HUGE! I appreciate your current conundrum, however, so I'm hoping the MRI shows everything is at least stable so you can "take a break" before deciding your next steps. These choices are so important, they deserve adequate reflection and consideration.
Be well,
Maggie
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- October 6, 2014 at 10:52 pm
Congratulations, Eva on their not finding active disease! That is HUGE! I appreciate your current conundrum, however, so I'm hoping the MRI shows everything is at least stable so you can "take a break" before deciding your next steps. These choices are so important, they deserve adequate reflection and consideration.
Be well,
Maggie
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