Kathy, it is good to hear from you guys, although it is a bad news that this stubborn met at the L4 is not getting killed by the radiosurgery. There are a few questions to ask:
1. Can it be the fluid or edema from the repeated radiosurgery that looks the same as the growth - Brittany had this situation at some point;
2. Can the open surgery be done to remove it whatever it is or if not possible, be treated by the cryo (or experience is very good there and more info can be found in the cryoablation topic of the treatment modalities forum here:
http://cureasps.org/forum/viewforum.php?f=43);
3. Is this met located close to where the primary was (possible incomplete primary resection) or in the chest spine area, I do not remember where L4 is. Is it in the L4 bone or the attached soft tissue or they do not know?
Tom from Pennsylvania - Dx 2002, RIP 2021
Re: Tom's Story
Olga
Re: Tom's Story
Thanks Olga,! I really appreciate your email and knowledge. I have all of your questions and I will take them with us when we meet the Dr. I cannot tell you how much it means to us to have you to guide us and give advice. We feel so lost and overwhelmed and I am trying so hard to keep fear and anger out of my mind and away from the eyes of the kids. You all here on this site keep us grounded and focused!
God Bless!
Kathy
God Bless!
Kathy
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Fictional
Re: Tom's Story
L4 is the lumbar vertebrae in the back, right?
I would wonder about an open procedure as well. The dilemma for many folks with metastatic ASPS is getting the surgeons to do a metastasectomy, but looking over you posts, it looks as if this tumor has at least been there a year, and it could even be due to an incomplete resection that could not be distinguished from a scar post-surgically. The primary was retroperitoneal, right? And it's been 8 years since the primary has been removed.
The pattern in general for ASPS seems to be that with recurrent metastasectomies, the disease becomes more indolent. At least as long as there is not overwhelming cancer burden or immunosuppression or some other factor.
Many surgeons in general won't like to operate for metastatic disease - because (the idea goes), if you see one tumor in one location, there are probably other multiple sites that haven't found yet. But while that argument seems reasonable if a tumor is growing so fast it could kill you a few months, it is less compelling when recurrent metastasectomies have been performed on ASPS patients who have survived 15+ years with the disease. There does seem to be something about the surgical process that slows the disease later....at least if the tumor can be removed completely. Post -surgery if some tumor is left behind, growth factors in the repair process after surgery can also cause left over tumors to grow more quickly.
I would wonder about an open procedure as well. The dilemma for many folks with metastatic ASPS is getting the surgeons to do a metastasectomy, but looking over you posts, it looks as if this tumor has at least been there a year, and it could even be due to an incomplete resection that could not be distinguished from a scar post-surgically. The primary was retroperitoneal, right? And it's been 8 years since the primary has been removed.
The pattern in general for ASPS seems to be that with recurrent metastasectomies, the disease becomes more indolent. At least as long as there is not overwhelming cancer burden or immunosuppression or some other factor.
Many surgeons in general won't like to operate for metastatic disease - because (the idea goes), if you see one tumor in one location, there are probably other multiple sites that haven't found yet. But while that argument seems reasonable if a tumor is growing so fast it could kill you a few months, it is less compelling when recurrent metastasectomies have been performed on ASPS patients who have survived 15+ years with the disease. There does seem to be something about the surgical process that slows the disease later....at least if the tumor can be removed completely. Post -surgery if some tumor is left behind, growth factors in the repair process after surgery can also cause left over tumors to grow more quickly.
Re: Tom's Story
Our Meeting with the Dr. in Pitt yesterday has left us very confused. Please accept my apology if I jump around here, b/c I am very tired. He came in the room and said he has a plan to do surgery to decompress the nerve that the tumor is resting on and causing Tom's pain. TJ has had this pain for seven years, so we are not sure why we are just learing that this is an option now. He said it is called faramintomy and has been done for years.
As for the tumor - his nurse as well as the local oncologist said last week that the tumor has grown. The Dr. in Pitt is now saying the tumor looks larger due to swelling and that he thinks it is dead, but cannot be sure. We asked why it would show up on a petscan and he said that petscans are not always reliable - My concern here is that the whole reason they treated this spot the 2nd time with radio surgery was b/c the petscan lite up....
I was also upset b/c he said cryoablation was not an obtion b/c there is no bone envolved. I asked if he was sure about the bone and he said yes and left. We had to call him back in with nore questions and then he said it was in the bone.....
We are feeling very discouraged and overwhelmed right now. The idea that TJ could be free of pain or have less pain sounds so wonderful. The idea of this surgery and then more surgery down the road if the tumor is not dead, well that does not sound good to him at all!
Any thoughts or ideas you could share would be greatly appreciated!
love to you all,
Kathy
As for the tumor - his nurse as well as the local oncologist said last week that the tumor has grown. The Dr. in Pitt is now saying the tumor looks larger due to swelling and that he thinks it is dead, but cannot be sure. We asked why it would show up on a petscan and he said that petscans are not always reliable - My concern here is that the whole reason they treated this spot the 2nd time with radio surgery was b/c the petscan lite up....
I was also upset b/c he said cryoablation was not an obtion b/c there is no bone envolved. I asked if he was sure about the bone and he said yes and left. We had to call him back in with nore questions and then he said it was in the bone.....
We are feeling very discouraged and overwhelmed right now. The idea that TJ could be free of pain or have less pain sounds so wonderful. The idea of this surgery and then more surgery down the road if the tumor is not dead, well that does not sound good to him at all!
Any thoughts or ideas you could share would be greatly appreciated!
love to you all,
Kathy
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Fictional
Re: Tom's Story
Try not to be too disappointed with surgeons, even the greatest ones will not know about non-surgical technologies. One of the most frustrating things about ASPS is that even if you gather together the best doctors in the world, there seems to be no one who puts it all together.
The most important thing about talking to your surgeon is that learning that he's willing to take the tumor out and in general the most important thing about surgeons is that they're good at surgery. ASPS patient seem to do well with repeated surgeries - as a general rule. Foraminotomies are done very routinely - but it's still back surgery. You have to spread a lot of muscle to get down at the foramen in the vertebrae.
My advice would be to send a CD of your films to LIttrup (are you in the US?) in Michigan. And leave a message on Barbara Adams' phone machine. You only need to do a quick Google search to find out that cryoablation can be done successfully for bone metastases. But what you don't know is whether Tom's bone met the way it is now is a candidate for cryo.
Hope that helps. As a medical doctor, just by temperament I used to not like surgeons so much, but now I know surgeons helped save our K's life. It is crazy to think about it now, but even as we were pre-opping for her first surgery 3 years ago, the surgeon was thinking aloud - "I think this is a good idea to take this tumor out..." I didn't say a word - he knew we wanted the tumor out. We just wanted the stupid thing dead somehow and out ASAP, in the path lab sealed in wax. And that's what we got.
The most important thing about talking to your surgeon is that learning that he's willing to take the tumor out and in general the most important thing about surgeons is that they're good at surgery. ASPS patient seem to do well with repeated surgeries - as a general rule. Foraminotomies are done very routinely - but it's still back surgery. You have to spread a lot of muscle to get down at the foramen in the vertebrae.
My advice would be to send a CD of your films to LIttrup (are you in the US?) in Michigan. And leave a message on Barbara Adams' phone machine. You only need to do a quick Google search to find out that cryoablation can be done successfully for bone metastases. But what you don't know is whether Tom's bone met the way it is now is a candidate for cryo.
Hope that helps. As a medical doctor, just by temperament I used to not like surgeons so much, but now I know surgeons helped save our K's life. It is crazy to think about it now, but even as we were pre-opping for her first surgery 3 years ago, the surgeon was thinking aloud - "I think this is a good idea to take this tumor out..." I didn't say a word - he knew we wanted the tumor out. We just wanted the stupid thing dead somehow and out ASAP, in the path lab sealed in wax. And that's what we got.
Re: Tom's Story
Kathy - I second 'F' advice to send the CD with the scan to Dr.Littrup and may be to ask him to talk to the local neurosurgeon too to evaluate these options one versus another. I am kind of confused with the bone/no bone involvement and even the swelling close to the spinal column is better to be resected...I mean do not loose the time, never get only one opinion and send scans around fast so you get the opinions fast enough. The thing is to reach Barbara and ask her to facilitate the review so you won't loose the time. I think both surgery and cryo are good and one surgery in 2-3 years is OK if it gives durable result and does not bring to much damage itself.
Olga
Re: Tom's Story
Thank you so much for your input. Tom is not a fit for cryo because of the nerve and Barbra said they cannot do it when nerves are involved. I was really counting on this.... Any advice for next steps would be appeciated! I am not even sure where to go from here.
Kathy
Kathy
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Fictional
Re: Tom's Story
It may seem like disappointing news, but maybe it just tells you that surgery may be the best option at this point.
Usually it's specialist surgeons who operate around the spinal nerves.
If you wanted another curbside, you could send Tom's films to Fritz Eilber at UCLA, but maybe surgery + foraminotomy would remove the tumor and also free up the nerve. It is good news that your surgeon is willing to do it.
You can also molecularly profile the tumor and see what genes are expressed in it and it may help with decisions about future clinical trials.
'F'
Usually it's specialist surgeons who operate around the spinal nerves.
If you wanted another curbside, you could send Tom's films to Fritz Eilber at UCLA, but maybe surgery + foraminotomy would remove the tumor and also free up the nerve. It is good news that your surgeon is willing to do it.
You can also molecularly profile the tumor and see what genes are expressed in it and it may help with decisions about future clinical trials.
'F'
Re: Tom's Story
How difficult is this surgery and recovery from it? How risky is it?Kathy wrote:Thank you so much for your input. Tom is not a fit for cryo because of the nerve and Barbra said they cannot do it when nerves are involved. I was really counting on this.... Any advice for next steps would be appeciated! I am not even sure where to go from here.
Kathy
From my point of view, I would do it right away. But then again, I don't know the answers to the above questions.
Re: Tom's Story
Hello Again Everyone,
It has been so long since I have posted an update on Tom. At the time we were left wondering what was going to happen b/c the Dr's thought the radio surgery on the back did not work. Tom has had scans every two months on the L4 area and the tumor continues to get smaller (showing that it is dying). We are incouraged by this and hope that it continues. He will be checked again in March. The brain MRI looks great. No new mets and the others are gone. The lungs look good as well and we are waiting to hear when they want to have them looked at again. He is feeling pretty good. All of his discomfort is due to the loss of the nerve for his left leg from the removal of the primary tumor.
We keep all of you in our prayers and we cannot thank you enough for the knowledge and inspiration you give us.
All the best,
Kathy
It has been so long since I have posted an update on Tom. At the time we were left wondering what was going to happen b/c the Dr's thought the radio surgery on the back did not work. Tom has had scans every two months on the L4 area and the tumor continues to get smaller (showing that it is dying). We are incouraged by this and hope that it continues. He will be checked again in March. The brain MRI looks great. No new mets and the others are gone. The lungs look good as well and we are waiting to hear when they want to have them looked at again. He is feeling pretty good. All of his discomfort is due to the loss of the nerve for his left leg from the removal of the primary tumor.
We keep all of you in our prayers and we cannot thank you enough for the knowledge and inspiration you give us.
All the best,
Kathy
Re: Tom's Story
Awesome, I am very happy to hear that!
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom's Story
Dear Kathy,
It was so good to hear from you and I am so deeply grateful for the wonderful news that Tom's L4 tumor seems to be responding to the radiosurgery and is shrinking and dying without the need forthe surgery which was being considered when you last posted in August. I am so thankful too that his brain and lungs appear to be stable with no new mets, and that he is feeling good
. Did he have Synergy or Cyperknife radiosurgery for his lumbar tumor? This information will be very helpful for any other patients on this Board who may have or develop a spinal tumor which is difficult or not possible to resect. Also, is any kind of a systemic treatment being considered or advised by Tom's doctors at this time, or are you just in a wait and see mode depending on the results of upcoming scans? My very best wishes and most positive thoughts are with Tom for continued shrinkage and necrosis of the L4 tumor, and continued stable disease. Please take care Kathy, tell Tom "HELLO ", know how deeply appreciated your thoughtful update and shared information are, and keep in touch as you are able.
With warm hugs, special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni
It was so good to hear from you and I am so deeply grateful for the wonderful news that Tom's L4 tumor seems to be responding to the radiosurgery and is shrinking and dying without the need forthe surgery which was being considered when you last posted in August. I am so thankful too that his brain and lungs appear to be stable with no new mets, and that he is feeling good
. Did he have Synergy or Cyperknife radiosurgery for his lumbar tumor? This information will be very helpful for any other patients on this Board who may have or develop a spinal tumor which is difficult or not possible to resect. Also, is any kind of a systemic treatment being considered or advised by Tom's doctors at this time, or are you just in a wait and see mode depending on the results of upcoming scans? My very best wishes and most positive thoughts are with Tom for continued shrinkage and necrosis of the L4 tumor, and continued stable disease. Please take care Kathy, tell Tom "HELLO ", know how deeply appreciated your thoughtful update and shared information are, and keep in touch as you are able.With warm hugs, special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni
Re: Tom's Story
Kathy, hi, it is so good to hear from you guys!!! I am sure that Tom knows how fortunate he is to have you by his side, such a dedicated wife to him and a mother to his kids.
It is really encouraging to hear that ASPS smaller mets responds that well to radio surgery. The actual clinical information about expected efficacy of the radiosurgery for ASPS is very limited and you can not underestimate what it may mean for someone looking for the reliable treatment options for the ASPS bone and brain mets.
I reread the previous posts and recap the info about using radiosurgery for ASPS in Tom's case:
Dr. Konziokla Hillman Cancer Institute in Pitt -The Gamma Knife for the 2 consecutive small brain mets (proven to be successful by the slow dissolving on the scans that took about a year);
Dr. Flinkinger and Dr. Konziokla at UPMC. - radiosurgery Synergy on the spine met in L4 twice (proven to be successful as the tumor continues to get smaller), more info on http://www.neurosurgery.pitt.edu/neuro_ ... nergy.html
If someone at some point will be given no options by the local doctors, they can contact these docs directly and get a second opinion as they might be more willing to treat ASPS patient now after they know that it worked in Tom case.
Thanks again for posting this encouraging info that support the need to scan the brain (MRI) and the bones (bone scan) at least once a year.
It is really encouraging to hear that ASPS smaller mets responds that well to radio surgery. The actual clinical information about expected efficacy of the radiosurgery for ASPS is very limited and you can not underestimate what it may mean for someone looking for the reliable treatment options for the ASPS bone and brain mets.
I reread the previous posts and recap the info about using radiosurgery for ASPS in Tom's case:
Dr. Konziokla Hillman Cancer Institute in Pitt -The Gamma Knife for the 2 consecutive small brain mets (proven to be successful by the slow dissolving on the scans that took about a year);
Dr. Flinkinger and Dr. Konziokla at UPMC. - radiosurgery Synergy on the spine met in L4 twice (proven to be successful as the tumor continues to get smaller), more info on http://www.neurosurgery.pitt.edu/neuro_ ... nergy.html
If someone at some point will be given no options by the local doctors, they can contact these docs directly and get a second opinion as they might be more willing to treat ASPS patient now after they know that it worked in Tom case.
Thanks again for posting this encouraging info that support the need to scan the brain (MRI) and the bones (bone scan) at least once a year.
Olga
Re: Tom from Pennsylvania - Dx 2002
Massive birthday greeting for Tom 
Re: Tom from Pennsylvania - Dx 2002
Olga, Thank you so much for putting all of that info together like that! Added to that could be Dr. Burton and Dr. Christy at UPMC at Shadyside. Tom had radiosurgery on a small lung met there and it was successful. Today Tom has one lung met and we are looking at having the procedure done again. He feels ok. Still has a lot of leg pain and stuggles with the fact that he can no longer run, but knows the blessing of being able to walk. He continues to inspire me as do all of you on here. The brain and back continue to look good. He is due to be scanned again in Sept and I will keep you all posted!
Blessings,
Kathy
Blessings,
Kathy