› Forums › General Melanoma Community › Advice needed about solitary lung met – why remove now?
- This topic has 51 replies, 9 voices, and was last updated 9 years, 4 months ago by
DZnDef.
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- December 1, 2014 at 2:43 am
I have a second left lung met two years after having one removed by VATS. This one seems to be growing quickly but is still small (1 cm at last scan) and causing no issues. Nothing else lit up on a recent PET, although one tiny new nodule in the right lung is visible on CT. The docs all say surgery is the best way to go, and I agree, but I am wondering why go through the surgery when it isn't causing me any problems yet? Why not wait until I have bothersome symptoms? My melanoma seems to be "indolent" so far – showing up every couple of years with solitary mets, so only surgery has been needed. I understand that there is no chance that removing this met will be curative in the long term and eventually some systemic treatment will be needed.
What do you guys think about just letting this thing go until it is a problem or other things show up? I feel great right now and hate the thought of making myself and my husband suffer through a procedure that while not horrible, is certainly not pleasant! I would appreciate any advice…
Lear
- Replies
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- December 1, 2014 at 5:19 am
Lear,
I really believe my melanoma has been indolent as yours seems to be. First primary in 2003, removed, did have positive node, lymphadenectomy. Nothing more until second primary in 2007, removed, with lymphadenectomy, all nodes negative. In 2010 "something" showed up in lung "looking nothing like melanoma". So we watched. It didn't even change. I had no symptoms. However, a bronch to determine what it was was finally recommended. Yep. Melanoma. Bad enough, but what was worse is that by then it had also seeded to my brain. So…no, I would NOT recommend watch and wait. Clearly, with melanoma we can hardly get rid of all the unobserved cells we have floating around….but if at all possible, removal will at least prevent obvious tumors from seeding to other places. Addtionally, we now know that immunotherapies (ipi and anti-PD1) as well as targeted ones (like the BRAF inhibitors) work best when fighting the lowest possible tumor burden. That's one reason that Weber at Moffitt is currently running a nivo/ipi trial for NED patients….they might never have to fight melanoma again if they hit it early! Some are treating NED patients with BRAFi in the same way, with the same rationale. So, no….I don't think it would be wise to sit and watch it. I don't want you to suffer the repercusions that could cause. Clearly, this is my opinion, but it is rooted in the science learned over the past 4 plus years. Only you can decide what is right for you. I wish you my best. Celeste
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- December 1, 2014 at 2:26 pm
i have to agree with Celeste. Get the pest removoed. In 1998 I had a small melanoma removed from my upper arm and then was followed dilligently. I thought all was well but not so…. In 2013 I had a tumor removed from my brain (melanoma). This was followed by SRS. A PET scan revealed a non-metabolic small lesion in my lung. A biopsy showed that it was in fact melanoma. It's dangerously close to my aorta so systemic treatment was suggested. My doctors believe the lung lesion was there before the brain tumor and caused the spread to my brain. I started Yervoy and radiation because by now melanoma had spread some more and had also fractured my L2 verterbra. Yervoy (only 2 infusions) and radiation failed. Ended up having spinal surgery, two rods, and six screws to prevent complete collapse, Recovered quickly! Was scheduled for IL2 but at the same time was accepted into a type of t-cell therapy at NIH. Received t-cells, IL2, etc. This was followed by some progression so it was considered a failure. I was then entered into the expanded access program for MK3475, now Keytruda. So far, this has worked starting from the very first infusion! I feel much better and my LDH is now in the noraml range. This is my story and hopefully would not ever happen to you…however I thought it was worthy of repeating just in case it could save you or someone else from all I've gone through.
Blessings! Terrie
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- December 1, 2014 at 2:26 pm
i have to agree with Celeste. Get the pest removoed. In 1998 I had a small melanoma removed from my upper arm and then was followed dilligently. I thought all was well but not so…. In 2013 I had a tumor removed from my brain (melanoma). This was followed by SRS. A PET scan revealed a non-metabolic small lesion in my lung. A biopsy showed that it was in fact melanoma. It's dangerously close to my aorta so systemic treatment was suggested. My doctors believe the lung lesion was there before the brain tumor and caused the spread to my brain. I started Yervoy and radiation because by now melanoma had spread some more and had also fractured my L2 verterbra. Yervoy (only 2 infusions) and radiation failed. Ended up having spinal surgery, two rods, and six screws to prevent complete collapse, Recovered quickly! Was scheduled for IL2 but at the same time was accepted into a type of t-cell therapy at NIH. Received t-cells, IL2, etc. This was followed by some progression so it was considered a failure. I was then entered into the expanded access program for MK3475, now Keytruda. So far, this has worked starting from the very first infusion! I feel much better and my LDH is now in the noraml range. This is my story and hopefully would not ever happen to you…however I thought it was worthy of repeating just in case it could save you or someone else from all I've gone through.
Blessings! Terrie
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- December 1, 2014 at 2:26 pm
i have to agree with Celeste. Get the pest removoed. In 1998 I had a small melanoma removed from my upper arm and then was followed dilligently. I thought all was well but not so…. In 2013 I had a tumor removed from my brain (melanoma). This was followed by SRS. A PET scan revealed a non-metabolic small lesion in my lung. A biopsy showed that it was in fact melanoma. It's dangerously close to my aorta so systemic treatment was suggested. My doctors believe the lung lesion was there before the brain tumor and caused the spread to my brain. I started Yervoy and radiation because by now melanoma had spread some more and had also fractured my L2 verterbra. Yervoy (only 2 infusions) and radiation failed. Ended up having spinal surgery, two rods, and six screws to prevent complete collapse, Recovered quickly! Was scheduled for IL2 but at the same time was accepted into a type of t-cell therapy at NIH. Received t-cells, IL2, etc. This was followed by some progression so it was considered a failure. I was then entered into the expanded access program for MK3475, now Keytruda. So far, this has worked starting from the very first infusion! I feel much better and my LDH is now in the noraml range. This is my story and hopefully would not ever happen to you…however I thought it was worthy of repeating just in case it could save you or someone else from all I've gone through.
Blessings! Terrie
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- December 2, 2014 at 5:56 am
If there are no symptoms, then how can we indentify that this problem is been arised and need to get a surgery..??
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- December 2, 2014 at 5:56 am
If there are no symptoms, then how can we indentify that this problem is been arised and need to get a surgery..??
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- December 2, 2014 at 5:56 am
If there are no symptoms, then how can we indentify that this problem is been arised and need to get a surgery..??
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- December 3, 2014 at 12:48 am
If you are referring to my brain met, I fell in my classroom (was a second grade teacher) and thought I had a concussion. Went to the emergency room, had a CT scan and was told no concussion….instead a mass in my brain that was presenting as cancer. Shock doesn't come close to my reaction!
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- December 3, 2014 at 12:48 am
If you are referring to my brain met, I fell in my classroom (was a second grade teacher) and thought I had a concussion. Went to the emergency room, had a CT scan and was told no concussion….instead a mass in my brain that was presenting as cancer. Shock doesn't come close to my reaction!
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- December 3, 2014 at 12:48 am
If you are referring to my brain met, I fell in my classroom (was a second grade teacher) and thought I had a concussion. Went to the emergency room, had a CT scan and was told no concussion….instead a mass in my brain that was presenting as cancer. Shock doesn't come close to my reaction!
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- December 2, 2014 at 7:04 am
Celeste – Are you saying that your brain mets were seeded from your lung mets? One of my doctors told me that all of my mets (including any future ones) have already been seeded from the original primary and it is a matter of time or triggers or immune action that determines whether a particular met will grow or not and when. If my doctor is correct, you would have had those brain mets regardless of whether you did anything to the lung mets. Or is it settled science that daughter mets lead to new mets?
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- December 2, 2014 at 7:04 am
Celeste – Are you saying that your brain mets were seeded from your lung mets? One of my doctors told me that all of my mets (including any future ones) have already been seeded from the original primary and it is a matter of time or triggers or immune action that determines whether a particular met will grow or not and when. If my doctor is correct, you would have had those brain mets regardless of whether you did anything to the lung mets. Or is it settled science that daughter mets lead to new mets?
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- December 3, 2014 at 2:38 am
We have learned it is an ongoing process. Unfortunately, an exponential one. Every additional cell, no matter from whence it cometh has the potential to cause more damage, to replicate and spread further. Some cells are seeded at the start. But an additional tumor sitting there will certainly seed more. We have long understood that lung mets rapidly progress to brain mets in many. That is the nature of cancer. It is the nature of melanoma. With one horrifying exception. Melanoma can actually make your immune system it's dupe and use it to hide from the normal processes that could potentially kill it. c
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- December 3, 2014 at 10:26 pm
Thanks for that information, Celeste. Understanding the mechanisms whereby cancer spreads plays a large role in deciding what to do about it. I had thought that since I was Stage IV, then it had already spread everywhere so there is no rush in "keeping it from spreading" but rather to attempt to keep it from growing wherever it might be. Interesting to hear that a met can give birth to another met. Not just a primary.
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- December 3, 2014 at 10:26 pm
Thanks for that information, Celeste. Understanding the mechanisms whereby cancer spreads plays a large role in deciding what to do about it. I had thought that since I was Stage IV, then it had already spread everywhere so there is no rush in "keeping it from spreading" but rather to attempt to keep it from growing wherever it might be. Interesting to hear that a met can give birth to another met. Not just a primary.
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- December 3, 2014 at 10:26 pm
Thanks for that information, Celeste. Understanding the mechanisms whereby cancer spreads plays a large role in deciding what to do about it. I had thought that since I was Stage IV, then it had already spread everywhere so there is no rush in "keeping it from spreading" but rather to attempt to keep it from growing wherever it might be. Interesting to hear that a met can give birth to another met. Not just a primary.
-
- December 3, 2014 at 2:38 am
We have learned it is an ongoing process. Unfortunately, an exponential one. Every additional cell, no matter from whence it cometh has the potential to cause more damage, to replicate and spread further. Some cells are seeded at the start. But an additional tumor sitting there will certainly seed more. We have long understood that lung mets rapidly progress to brain mets in many. That is the nature of cancer. It is the nature of melanoma. With one horrifying exception. Melanoma can actually make your immune system it's dupe and use it to hide from the normal processes that could potentially kill it. c
-
- December 3, 2014 at 2:38 am
We have learned it is an ongoing process. Unfortunately, an exponential one. Every additional cell, no matter from whence it cometh has the potential to cause more damage, to replicate and spread further. Some cells are seeded at the start. But an additional tumor sitting there will certainly seed more. We have long understood that lung mets rapidly progress to brain mets in many. That is the nature of cancer. It is the nature of melanoma. With one horrifying exception. Melanoma can actually make your immune system it's dupe and use it to hide from the normal processes that could potentially kill it. c
-
- December 2, 2014 at 7:04 am
Celeste – Are you saying that your brain mets were seeded from your lung mets? One of my doctors told me that all of my mets (including any future ones) have already been seeded from the original primary and it is a matter of time or triggers or immune action that determines whether a particular met will grow or not and when. If my doctor is correct, you would have had those brain mets regardless of whether you did anything to the lung mets. Or is it settled science that daughter mets lead to new mets?
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- December 1, 2014 at 5:19 am
Lear,
I really believe my melanoma has been indolent as yours seems to be. First primary in 2003, removed, did have positive node, lymphadenectomy. Nothing more until second primary in 2007, removed, with lymphadenectomy, all nodes negative. In 2010 "something" showed up in lung "looking nothing like melanoma". So we watched. It didn't even change. I had no symptoms. However, a bronch to determine what it was was finally recommended. Yep. Melanoma. Bad enough, but what was worse is that by then it had also seeded to my brain. So…no, I would NOT recommend watch and wait. Clearly, with melanoma we can hardly get rid of all the unobserved cells we have floating around….but if at all possible, removal will at least prevent obvious tumors from seeding to other places. Addtionally, we now know that immunotherapies (ipi and anti-PD1) as well as targeted ones (like the BRAF inhibitors) work best when fighting the lowest possible tumor burden. That's one reason that Weber at Moffitt is currently running a nivo/ipi trial for NED patients….they might never have to fight melanoma again if they hit it early! Some are treating NED patients with BRAFi in the same way, with the same rationale. So, no….I don't think it would be wise to sit and watch it. I don't want you to suffer the repercusions that could cause. Clearly, this is my opinion, but it is rooted in the science learned over the past 4 plus years. Only you can decide what is right for you. I wish you my best. Celeste
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- December 1, 2014 at 5:19 am
Lear,
I really believe my melanoma has been indolent as yours seems to be. First primary in 2003, removed, did have positive node, lymphadenectomy. Nothing more until second primary in 2007, removed, with lymphadenectomy, all nodes negative. In 2010 "something" showed up in lung "looking nothing like melanoma". So we watched. It didn't even change. I had no symptoms. However, a bronch to determine what it was was finally recommended. Yep. Melanoma. Bad enough, but what was worse is that by then it had also seeded to my brain. So…no, I would NOT recommend watch and wait. Clearly, with melanoma we can hardly get rid of all the unobserved cells we have floating around….but if at all possible, removal will at least prevent obvious tumors from seeding to other places. Addtionally, we now know that immunotherapies (ipi and anti-PD1) as well as targeted ones (like the BRAF inhibitors) work best when fighting the lowest possible tumor burden. That's one reason that Weber at Moffitt is currently running a nivo/ipi trial for NED patients….they might never have to fight melanoma again if they hit it early! Some are treating NED patients with BRAFi in the same way, with the same rationale. So, no….I don't think it would be wise to sit and watch it. I don't want you to suffer the repercusions that could cause. Clearly, this is my opinion, but it is rooted in the science learned over the past 4 plus years. Only you can decide what is right for you. I wish you my best. Celeste
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- December 1, 2014 at 9:05 am
Melanoma mutates at a very high rate. With each cell division it is like playing russian roulette. Waiting until you have a larger tumor only gives mel the chance to further seed your body with microscopic cells, each better at surviving than the last. With all due respect you are playing with fire.
Consider yourself lucky to have indolent disease. I did and luckily IL-2 got rid of my one remaining tumor after my VATS. I have had a durable remission as a result, going on 5 years.
IMHO – do something, anything to prevent mel from mutating into something you may not have been expecting. Just because you have indolent disease now dosn't mean that can change at any moment. Dianne from Spokane was NED for long periods of time, had a lung met, underwent IL-2, and days after her first treatment had a stroke. An MRI showed multiple brain mets from which she sadly never did recover.
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- December 1, 2014 at 9:05 am
Melanoma mutates at a very high rate. With each cell division it is like playing russian roulette. Waiting until you have a larger tumor only gives mel the chance to further seed your body with microscopic cells, each better at surviving than the last. With all due respect you are playing with fire.
Consider yourself lucky to have indolent disease. I did and luckily IL-2 got rid of my one remaining tumor after my VATS. I have had a durable remission as a result, going on 5 years.
IMHO – do something, anything to prevent mel from mutating into something you may not have been expecting. Just because you have indolent disease now dosn't mean that can change at any moment. Dianne from Spokane was NED for long periods of time, had a lung met, underwent IL-2, and days after her first treatment had a stroke. An MRI showed multiple brain mets from which she sadly never did recover.
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- December 1, 2014 at 9:05 am
Melanoma mutates at a very high rate. With each cell division it is like playing russian roulette. Waiting until you have a larger tumor only gives mel the chance to further seed your body with microscopic cells, each better at surviving than the last. With all due respect you are playing with fire.
Consider yourself lucky to have indolent disease. I did and luckily IL-2 got rid of my one remaining tumor after my VATS. I have had a durable remission as a result, going on 5 years.
IMHO – do something, anything to prevent mel from mutating into something you may not have been expecting. Just because you have indolent disease now dosn't mean that can change at any moment. Dianne from Spokane was NED for long periods of time, had a lung met, underwent IL-2, and days after her first treatment had a stroke. An MRI showed multiple brain mets from which she sadly never did recover.
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- December 1, 2014 at 8:24 pm
Lear,
I can't really give advice. I can tell you my own decisions. I had a VATS in 2010 also,. It was for biopsy only. I had 8 indolent mets spread across both lungs. Following biopsy I got IL-2. That put lung mets in remssion. They are still NED to this day. But I got a very non-indolent recurrences in brain 2010-2011. Those have been in remission or otherwise stable since 2011-2012 after surgery, radiation and IPI. Now, end of 2013-current, disease showed up again, this time in lymph node(s) near lungs. I was offered surgery or systemic therapy (or radiation at one facility, I think via CyberKnife that can adjust for breathing!). I've opted for systemic therapy (clincial trial).
Personally I want to get ahead of disease — I don't want to get to "worse" before embarking on treatment. Also, as I don't believe any immune treatmnt has been proven to have reached 50% effectiveness, I also fear I may need time to try a second, or third therapy to try to find one that works.
VATS is no fun with the hospital stay, the drain tube, vomiting as the anesthesia wears off, recovery, infection risk, etc. On the other hand I also agree with Celeste, Terrie and Kim that some treatment may put off "worse" forever, and/or some time further down the future, when additional treatments may also be available compared to today. On the other hand no treatment is without risks. Even something like IPI. But I've read that immune therapy on average are more effective when there is not a heavy tumor load. Those are my own rationales behind pursuing my current treatment. Hope those helps.
Kyle
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- December 1, 2014 at 8:24 pm
Lear,
I can't really give advice. I can tell you my own decisions. I had a VATS in 2010 also,. It was for biopsy only. I had 8 indolent mets spread across both lungs. Following biopsy I got IL-2. That put lung mets in remssion. They are still NED to this day. But I got a very non-indolent recurrences in brain 2010-2011. Those have been in remission or otherwise stable since 2011-2012 after surgery, radiation and IPI. Now, end of 2013-current, disease showed up again, this time in lymph node(s) near lungs. I was offered surgery or systemic therapy (or radiation at one facility, I think via CyberKnife that can adjust for breathing!). I've opted for systemic therapy (clincial trial).
Personally I want to get ahead of disease — I don't want to get to "worse" before embarking on treatment. Also, as I don't believe any immune treatmnt has been proven to have reached 50% effectiveness, I also fear I may need time to try a second, or third therapy to try to find one that works.
VATS is no fun with the hospital stay, the drain tube, vomiting as the anesthesia wears off, recovery, infection risk, etc. On the other hand I also agree with Celeste, Terrie and Kim that some treatment may put off "worse" forever, and/or some time further down the future, when additional treatments may also be available compared to today. On the other hand no treatment is without risks. Even something like IPI. But I've read that immune therapy on average are more effective when there is not a heavy tumor load. Those are my own rationales behind pursuing my current treatment. Hope those helps.
Kyle
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- December 1, 2014 at 10:34 pm
Thanks to all of you who replied! I know you are right – I was just hoping someone would come up with the opposite opinion, so I could maybe put off that surgery. Dr. Wolchok and my local onc both are hoping that I am one of those lucky ones who just need some surgery every couple of years to keep things in control, especially since a stem cell transplant in 2002 for a different issue means immune therapy is out for me. Scans on Wednesday, so I will know soon enough what kind of timeline we are working with.
Again, thank you, and I wish you all good health!
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- December 1, 2014 at 10:34 pm
Thanks to all of you who replied! I know you are right – I was just hoping someone would come up with the opposite opinion, so I could maybe put off that surgery. Dr. Wolchok and my local onc both are hoping that I am one of those lucky ones who just need some surgery every couple of years to keep things in control, especially since a stem cell transplant in 2002 for a different issue means immune therapy is out for me. Scans on Wednesday, so I will know soon enough what kind of timeline we are working with.
Again, thank you, and I wish you all good health!
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- December 1, 2014 at 10:34 pm
Thanks to all of you who replied! I know you are right – I was just hoping someone would come up with the opposite opinion, so I could maybe put off that surgery. Dr. Wolchok and my local onc both are hoping that I am one of those lucky ones who just need some surgery every couple of years to keep things in control, especially since a stem cell transplant in 2002 for a different issue means immune therapy is out for me. Scans on Wednesday, so I will know soon enough what kind of timeline we are working with.
Again, thank you, and I wish you all good health!
-
- December 1, 2014 at 8:24 pm
Lear,
I can't really give advice. I can tell you my own decisions. I had a VATS in 2010 also,. It was for biopsy only. I had 8 indolent mets spread across both lungs. Following biopsy I got IL-2. That put lung mets in remssion. They are still NED to this day. But I got a very non-indolent recurrences in brain 2010-2011. Those have been in remission or otherwise stable since 2011-2012 after surgery, radiation and IPI. Now, end of 2013-current, disease showed up again, this time in lymph node(s) near lungs. I was offered surgery or systemic therapy (or radiation at one facility, I think via CyberKnife that can adjust for breathing!). I've opted for systemic therapy (clincial trial).
Personally I want to get ahead of disease — I don't want to get to "worse" before embarking on treatment. Also, as I don't believe any immune treatmnt has been proven to have reached 50% effectiveness, I also fear I may need time to try a second, or third therapy to try to find one that works.
VATS is no fun with the hospital stay, the drain tube, vomiting as the anesthesia wears off, recovery, infection risk, etc. On the other hand I also agree with Celeste, Terrie and Kim that some treatment may put off "worse" forever, and/or some time further down the future, when additional treatments may also be available compared to today. On the other hand no treatment is without risks. Even something like IPI. But I've read that immune therapy on average are more effective when there is not a heavy tumor load. Those are my own rationales behind pursuing my current treatment. Hope those helps.
Kyle
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- December 2, 2014 at 4:46 am
Vivian,
Has anyone offered up stereotactic radiation (SRS) as an option. I had a very similar situation about a year ago, a single 1.2-cm lung met, slow growing and asymptomatic. We watched it for several months and when it slightly increased to 1.4-cm, decided not to wait and just take care of it while we weren't dealing with anything else. After discussion with the thoracic surgeon, even he was in agreement that SRS would be less invasive.
It was 5 sessions over two weeks, minimal to no side effects, no recovery, and best of all, the tumor no longer appears on any scans going back to the first one at just two months after the radiation — it's been effectively eradicated. Traditional thinking was that melanoma is resistant to radiation, but newer evidence shows that fewer, higher doses of radiation, as with SRS, can be effective. I've written about it in several other posts if you search on my username.
Best, Joe
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- December 2, 2014 at 4:46 am
Vivian,
Has anyone offered up stereotactic radiation (SRS) as an option. I had a very similar situation about a year ago, a single 1.2-cm lung met, slow growing and asymptomatic. We watched it for several months and when it slightly increased to 1.4-cm, decided not to wait and just take care of it while we weren't dealing with anything else. After discussion with the thoracic surgeon, even he was in agreement that SRS would be less invasive.
It was 5 sessions over two weeks, minimal to no side effects, no recovery, and best of all, the tumor no longer appears on any scans going back to the first one at just two months after the radiation — it's been effectively eradicated. Traditional thinking was that melanoma is resistant to radiation, but newer evidence shows that fewer, higher doses of radiation, as with SRS, can be effective. I've written about it in several other posts if you search on my username.
Best, Joe
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- December 3, 2014 at 1:27 am
Hi Joe,
Yes, radiation has been suggested as an option, although not the preferred one. I do plan to chat with the radiologist who did the full body radiation transplant prep twelve years ago. He knows my history and I believe he would only go forward if he thought he could get this met. Your description of the process sure sounds better than my VATS experience! I really appreciate your input.
I know you have been through a lot recently and I hope you are feeling well right now.
Regards,
Lear
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- December 3, 2014 at 1:27 am
Hi Joe,
Yes, radiation has been suggested as an option, although not the preferred one. I do plan to chat with the radiologist who did the full body radiation transplant prep twelve years ago. He knows my history and I believe he would only go forward if he thought he could get this met. Your description of the process sure sounds better than my VATS experience! I really appreciate your input.
I know you have been through a lot recently and I hope you are feeling well right now.
Regards,
Lear
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- December 3, 2014 at 1:27 am
Hi Joe,
Yes, radiation has been suggested as an option, although not the preferred one. I do plan to chat with the radiologist who did the full body radiation transplant prep twelve years ago. He knows my history and I believe he would only go forward if he thought he could get this met. Your description of the process sure sounds better than my VATS experience! I really appreciate your input.
I know you have been through a lot recently and I hope you are feeling well right now.
Regards,
Lear
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- December 2, 2014 at 4:46 am
Vivian,
Has anyone offered up stereotactic radiation (SRS) as an option. I had a very similar situation about a year ago, a single 1.2-cm lung met, slow growing and asymptomatic. We watched it for several months and when it slightly increased to 1.4-cm, decided not to wait and just take care of it while we weren't dealing with anything else. After discussion with the thoracic surgeon, even he was in agreement that SRS would be less invasive.
It was 5 sessions over two weeks, minimal to no side effects, no recovery, and best of all, the tumor no longer appears on any scans going back to the first one at just two months after the radiation — it's been effectively eradicated. Traditional thinking was that melanoma is resistant to radiation, but newer evidence shows that fewer, higher doses of radiation, as with SRS, can be effective. I've written about it in several other posts if you search on my username.
Best, Joe
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- December 2, 2014 at 7:20 am
Vivian,
I am currently taking the approach you have been considering. I have two active lung mets (5 spots total but the rest are stable and may not be mets) which were identified in March of this year. I decided that since my disease is systemic, I will use a systemic approach once I begin treatment. However, my disease appears to be indolent so I asked my oncologist if I had time to first address my fundamental overall health before starting treatment. In my personal situation, he did not see that as a problem as he has helped many patients recover that were much worse off than me. He referred me to a Naturopath and I made radical changes in diet and lifestyle. In June a CT scan showed minimal growth and he said I could continue with what I was doing for another 3 months if I liked. I did. In September, my CT scan showed "barely measurable" growth and he told his colleague in front of me "her immune system is keeping her disease in check". He's given me another 4 months before starting treatment (next CT scans will be in January). My agreement with my oncologist is that I will begin treatment when I either have new met(s) and/or my existing mets become too large. Until then, I am enjoying my life.
I don't know if the path I have chosen is the wisest choice in the grand scheme of things but I do know that it is the absolute right choice for me right now. I continue to feel great with no symptoms of my disease and I am treasuring this "bonus" time. If I do have brain mets next time, they may well have come from the original tumor and were just dormant for a while, waiting for the right environment to start growing.
As you are considering surgery and not systemic treatment, it is a different issue for you as your tumors need to be of a size where a surgeon is comfortable removing them. Wait too long and they may be too big to remove.
It is a difficult decision and truly your own. No one can tell you what to do, only offer up our own experiences and advice but every case is different and we don't live with the consequences, you do. Whatever you choose, you must own it and not look back. We do the best we can with the information we have at the moment.
Be well
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- December 2, 2014 at 7:20 am
Vivian,
I am currently taking the approach you have been considering. I have two active lung mets (5 spots total but the rest are stable and may not be mets) which were identified in March of this year. I decided that since my disease is systemic, I will use a systemic approach once I begin treatment. However, my disease appears to be indolent so I asked my oncologist if I had time to first address my fundamental overall health before starting treatment. In my personal situation, he did not see that as a problem as he has helped many patients recover that were much worse off than me. He referred me to a Naturopath and I made radical changes in diet and lifestyle. In June a CT scan showed minimal growth and he said I could continue with what I was doing for another 3 months if I liked. I did. In September, my CT scan showed "barely measurable" growth and he told his colleague in front of me "her immune system is keeping her disease in check". He's given me another 4 months before starting treatment (next CT scans will be in January). My agreement with my oncologist is that I will begin treatment when I either have new met(s) and/or my existing mets become too large. Until then, I am enjoying my life.
I don't know if the path I have chosen is the wisest choice in the grand scheme of things but I do know that it is the absolute right choice for me right now. I continue to feel great with no symptoms of my disease and I am treasuring this "bonus" time. If I do have brain mets next time, they may well have come from the original tumor and were just dormant for a while, waiting for the right environment to start growing.
As you are considering surgery and not systemic treatment, it is a different issue for you as your tumors need to be of a size where a surgeon is comfortable removing them. Wait too long and they may be too big to remove.
It is a difficult decision and truly your own. No one can tell you what to do, only offer up our own experiences and advice but every case is different and we don't live with the consequences, you do. Whatever you choose, you must own it and not look back. We do the best we can with the information we have at the moment.
Be well
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- December 2, 2014 at 7:20 am
Vivian,
I am currently taking the approach you have been considering. I have two active lung mets (5 spots total but the rest are stable and may not be mets) which were identified in March of this year. I decided that since my disease is systemic, I will use a systemic approach once I begin treatment. However, my disease appears to be indolent so I asked my oncologist if I had time to first address my fundamental overall health before starting treatment. In my personal situation, he did not see that as a problem as he has helped many patients recover that were much worse off than me. He referred me to a Naturopath and I made radical changes in diet and lifestyle. In June a CT scan showed minimal growth and he said I could continue with what I was doing for another 3 months if I liked. I did. In September, my CT scan showed "barely measurable" growth and he told his colleague in front of me "her immune system is keeping her disease in check". He's given me another 4 months before starting treatment (next CT scans will be in January). My agreement with my oncologist is that I will begin treatment when I either have new met(s) and/or my existing mets become too large. Until then, I am enjoying my life.
I don't know if the path I have chosen is the wisest choice in the grand scheme of things but I do know that it is the absolute right choice for me right now. I continue to feel great with no symptoms of my disease and I am treasuring this "bonus" time. If I do have brain mets next time, they may well have come from the original tumor and were just dormant for a while, waiting for the right environment to start growing.
As you are considering surgery and not systemic treatment, it is a different issue for you as your tumors need to be of a size where a surgeon is comfortable removing them. Wait too long and they may be too big to remove.
It is a difficult decision and truly your own. No one can tell you what to do, only offer up our own experiences and advice but every case is different and we don't live with the consequences, you do. Whatever you choose, you must own it and not look back. We do the best we can with the information we have at the moment.
Be well
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- December 2, 2014 at 7:37 am
One more option you might want to discuss with your doctors instead of surgery: My thoracic surgeon who is always pushing me towards surgery (natch) told me about a newer technique called PD105 seeding. This is where they take very small bits of Palladium and inject it/insert it directly into the tumor. Essentially, this is extremely targeted radiation therapy. He said that the Palladium has an effect to about 1 cm so one "seed" would work on a tumor up to 2 cm (assuming they landed in the center). I don't know where you are located but they do this procedure at Mission Hospital in Orange County California. A Dr. Doggett does the "seeding" and Dr. Lempert is the imaging radiologist that works with him on getting the correct placement. It is an outpatient procedure. I don't know any more about it, I'm afraid but my surgeon was very excited about it. It may be worth discussing with your doctors.
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- December 2, 2014 at 7:37 am
One more option you might want to discuss with your doctors instead of surgery: My thoracic surgeon who is always pushing me towards surgery (natch) told me about a newer technique called PD105 seeding. This is where they take very small bits of Palladium and inject it/insert it directly into the tumor. Essentially, this is extremely targeted radiation therapy. He said that the Palladium has an effect to about 1 cm so one "seed" would work on a tumor up to 2 cm (assuming they landed in the center). I don't know where you are located but they do this procedure at Mission Hospital in Orange County California. A Dr. Doggett does the "seeding" and Dr. Lempert is the imaging radiologist that works with him on getting the correct placement. It is an outpatient procedure. I don't know any more about it, I'm afraid but my surgeon was very excited about it. It may be worth discussing with your doctors.
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- December 2, 2014 at 7:41 am
Actually, I do know one more thing about it, after the procedure, you wait 2 months and then get a CT scan with the expectation that the tumor has either shrunk or stayed the same size in which case it is likely dead. He said his colleague has had quite a bit of success with this but has not gotten around to publishing yet. I could put your docs in touch with my doc if they want to know more about it.
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- December 2, 2014 at 7:41 am
Actually, I do know one more thing about it, after the procedure, you wait 2 months and then get a CT scan with the expectation that the tumor has either shrunk or stayed the same size in which case it is likely dead. He said his colleague has had quite a bit of success with this but has not gotten around to publishing yet. I could put your docs in touch with my doc if they want to know more about it.
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- December 2, 2014 at 7:41 am
Actually, I do know one more thing about it, after the procedure, you wait 2 months and then get a CT scan with the expectation that the tumor has either shrunk or stayed the same size in which case it is likely dead. He said his colleague has had quite a bit of success with this but has not gotten around to publishing yet. I could put your docs in touch with my doc if they want to know more about it.
-
- December 2, 2014 at 7:37 am
One more option you might want to discuss with your doctors instead of surgery: My thoracic surgeon who is always pushing me towards surgery (natch) told me about a newer technique called PD105 seeding. This is where they take very small bits of Palladium and inject it/insert it directly into the tumor. Essentially, this is extremely targeted radiation therapy. He said that the Palladium has an effect to about 1 cm so one "seed" would work on a tumor up to 2 cm (assuming they landed in the center). I don't know where you are located but they do this procedure at Mission Hospital in Orange County California. A Dr. Doggett does the "seeding" and Dr. Lempert is the imaging radiologist that works with him on getting the correct placement. It is an outpatient procedure. I don't know any more about it, I'm afraid but my surgeon was very excited about it. It may be worth discussing with your doctors.
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- December 3, 2014 at 1:27 am
Given the success your strategy of surgical solutions to occasional solitary tumors has had I'd wonder why you would want to change the strategy now. I would think that by keeping your tumor load low you reduce the probability of broader invasion. I wouldn't even consider waiting for the "bothersome symptoms". I had a tumor in my lower left lung lobe removed in Aug 2011 and after an uncomfortable week and a half I was back at work and just a tad sore. I'd take that discomfort any day vs the uncertainly of not knowing just how far the disease had spread while waiting for the bothersome symptoms to rear their head. I have had a somewhat similarly history of solitary Mets and have been pursuing a strategy of surgery on lung then brain. The lung was just surgery but the brain saw some SRS radiation and Yervoy combo treatments before surgery and more radiation. Just moved back into NED status after my 11/18/14 brain scan and consultation. Given the number of immunotherapies coming online these decisions might not be as easy as they once were but it sounds like you have bought yourself lots of time. Hopefully forever time. Given the speed at which these new treatments are coming to market buying time is worth an awful lot. Good luck whichever route you choose..
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- December 3, 2014 at 1:27 am
Given the success your strategy of surgical solutions to occasional solitary tumors has had I'd wonder why you would want to change the strategy now. I would think that by keeping your tumor load low you reduce the probability of broader invasion. I wouldn't even consider waiting for the "bothersome symptoms". I had a tumor in my lower left lung lobe removed in Aug 2011 and after an uncomfortable week and a half I was back at work and just a tad sore. I'd take that discomfort any day vs the uncertainly of not knowing just how far the disease had spread while waiting for the bothersome symptoms to rear their head. I have had a somewhat similarly history of solitary Mets and have been pursuing a strategy of surgery on lung then brain. The lung was just surgery but the brain saw some SRS radiation and Yervoy combo treatments before surgery and more radiation. Just moved back into NED status after my 11/18/14 brain scan and consultation. Given the number of immunotherapies coming online these decisions might not be as easy as they once were but it sounds like you have bought yourself lots of time. Hopefully forever time. Given the speed at which these new treatments are coming to market buying time is worth an awful lot. Good luck whichever route you choose..
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- December 3, 2014 at 1:27 am
Given the success your strategy of surgical solutions to occasional solitary tumors has had I'd wonder why you would want to change the strategy now. I would think that by keeping your tumor load low you reduce the probability of broader invasion. I wouldn't even consider waiting for the "bothersome symptoms". I had a tumor in my lower left lung lobe removed in Aug 2011 and after an uncomfortable week and a half I was back at work and just a tad sore. I'd take that discomfort any day vs the uncertainly of not knowing just how far the disease had spread while waiting for the bothersome symptoms to rear their head. I have had a somewhat similarly history of solitary Mets and have been pursuing a strategy of surgery on lung then brain. The lung was just surgery but the brain saw some SRS radiation and Yervoy combo treatments before surgery and more radiation. Just moved back into NED status after my 11/18/14 brain scan and consultation. Given the number of immunotherapies coming online these decisions might not be as easy as they once were but it sounds like you have bought yourself lots of time. Hopefully forever time. Given the speed at which these new treatments are coming to market buying time is worth an awful lot. Good luck whichever route you choose..
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