Jen, the probability of dissemination and pneumothorax complication is about the same with cryo and RFA and mostly depends on the experience of the doctor performing it. Generally I would not go for a doc that is done less than 300 procedures. The doc that performed RFA to Brittany was a newby and as understand her ablation was done as a part of the initial evaluation that they ad at the hospital deciding if this modality is something they can use for the patients when the open surgery is not recommend - I read their report later. We have some patients here that had their ablutions done by Dr.Littrup who also had pneumothorax as a complication. There are scientific debates that are ongoing re.what modality - cro, RFA, Litt or radio surgery is better overall. I think that I posted a link to a review somewhere. Cryo is definitely better in some locations when it is close to something that can be damaged by heat, it is also better if it can be done by dr. Littrup as it ensures the quality, that he wouldn't miss the target. If the cryo doc is inexperienced, there is no advantage comp. to let say very experienced Dr.Dupuy from Brown university by Boston.
In general you would need to contact Barb she is Dr.Littrup assistant she might be able to answer your question re. Current situation with the coverage for cryo. Also contact dr.Suh and find out his current count of the lung procedures he has done so far - providing they are willing to do it.
I would be surprised if the insurance would cover the Imrt and not cover ablation as they generally do the same.
Jen from California - Dx 2009
Re: Jen from California (Dx 2009)
So I saw my UCLA radonc that performed my SBRT (not IMRT) radiation procedure to two larger lung mets last year. (Sorry, in my previous posts I said I had IMRT radiation done, but it's actually SBRT...Oops - I got them confused.) My radonc reviewed my July chest CT scan with me and noted that the scan looks relatively stable even though one of the non radiated nodules that they were tracking grew 3mm in 6 months. I expressed that since this is a slow growing disease, how is it considered stable if it's slowly growing overtime even when on Pazopanib...He states that overall since there are no new nodules in the lungs and the growth is very slight, that it is pretty stable. Still not sure what I think about that opinion...
I also asked him if I should radiate the two left larger nodules...and he said not yet. Only if they are growing fast then he will consider radiating them using SBRT. He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger. If they seem to be under control, he doesn't want to put my body through more radiation unless it's very necessary to do so. He also said that getting rid of one or two larger nodules that are under control and not growing rapidly wouldn't necessarily prolong my overall survival (given that I still have about 100 other smaller nodules), so I shouldn't be undergoing radiation unless I have to. So we concluded that I'll get my next chest CT scan in a couple months and see what happens then. If there is a lot of growth in the mets, we will consider SBRT for me then.
I also mentioned this website to him and that ASPS patients on this website go to Germany to get laser surgery on their lung mets using technology not available here...He didn't respond too positively to it because he doesn't like the idea of people going to another country paying cash to get procedures done when the US has other / similar options available to them ....(I'm obviously not relaying his responses very accurately but that's the gist of it..)
I do trust him being my doctor and he's an excellent doctor...so I don't know if he can be somewhat biased or something..or maybe he's just unaware of the Dr. Rolle technology...not sure why he thinks that way...
Anyway, I'm starting to ramble...I guess it's hard to know what the right thing to do is and who to listen to in terms of what's the best thing for me to do...
I also asked him if I should radiate the two left larger nodules...and he said not yet. Only if they are growing fast then he will consider radiating them using SBRT. He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger. If they seem to be under control, he doesn't want to put my body through more radiation unless it's very necessary to do so. He also said that getting rid of one or two larger nodules that are under control and not growing rapidly wouldn't necessarily prolong my overall survival (given that I still have about 100 other smaller nodules), so I shouldn't be undergoing radiation unless I have to. So we concluded that I'll get my next chest CT scan in a couple months and see what happens then. If there is a lot of growth in the mets, we will consider SBRT for me then.
I also mentioned this website to him and that ASPS patients on this website go to Germany to get laser surgery on their lung mets using technology not available here...He didn't respond too positively to it because he doesn't like the idea of people going to another country paying cash to get procedures done when the US has other / similar options available to them ....(I'm obviously not relaying his responses very accurately but that's the gist of it..)
I do trust him being my doctor and he's an excellent doctor...so I don't know if he can be somewhat biased or something..or maybe he's just unaware of the Dr. Rolle technology...not sure why he thinks that way...
Anyway, I'm starting to ramble...I guess it's hard to know what the right thing to do is and who to listen to in terms of what's the best thing for me to do...
Re: Jen from California (Dx 2009)
by jenhy168 » Sun Sep 01, 2013 10:41 pm
Hi Jen
This is Debbie. In response to your post I've put in bold my responses
So I saw my UCLA radonc that performed my SBRT (not IMRT) radiation procedure to two larger lung mets last year. (Sorry, in my previous posts I said I had IMRT radiation done, but it's actually SBRT...Oops - I got them confused.) My radonc reviewed my July chest CT scan with me and noted that the scan looks relatively stable even though one of the non radiated nodules that they were tracking grew 3mm in 6 months. I expressed that since this is a slow growing disease, how is it considered stable if it's slowly growing overtime even when on Pazopanib...He states that overall since there are no new nodules in the lungs and the growth is very slight, that it is pretty stable. Still not sure what I think about that opinion...
1. I agree with"not sure what I think about that opinion"
Is your radonc your primary onocologist?
I also asked him if I should radiate the two left larger nodules...and he said not yet. Only if they are growing fast then he will consider radiating them using SBRT. He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger.
2. Where are they located in left lung, Jen ?
And remind us of their size?
If they seem to be under control, he doesn't want to put my body through more radiation unless it's very necessary to do so. He also said that getting rid of one or two larger nodules that are under control and not growing rapidly wouldn't necessarily prolong my overall survival (given that I still have about 100 other smaller nodules), so I shouldn't be undergoing radiation unless I have to. So we concluded that I'll get my next chest CT scan in a couple months and see what happens then. If there is a lot of growth in the mets, we will consider SBRT for me then.
3. Dr Rolle has reduced tumors to manageable numbers in lots of people in their lungs and why wouldn't the reduction of lung crowding , air flow preventing tumors prolong a persons life not to mention reduce the chances of the spreading from those now eliminated tumors ?
I also mentioned this website to him and that ASPS patients on this website go to Germany to get laser surgery on their lung mets using technology not available here...He didn't respond too positively to it because he doesn't like the idea of people going to another country paying cash to get procedures done when the US has other / similar options available to them ....(I'm obviously not relaying his responses very accurately but that's the gist of it..)
4. His more appropriate answer might of been I will look into it for you.
The removal of that many tumors from your lung and other patients like us cannot be performed in the states
I do trust him being my doctor and he's an excellent doctor...so I don't know if he can be somewhat biased or something..or maybe he's just unaware of the Dr. Rolle technology...not sure why he thinks that way...
Anyway, I'm starting to ramble...I guess it's hard to know what the right thing to do is and who to listen to in terms of what's the best thing for me to do...
5. Jen, you've done an excellant job of presenting your case to the doctor. You are not the first patient to encounter a doctor that does not believe that this disease can be managed surgeries so as to become a"chronic " disease rather than a disease that is an end to our lives.
Stick to your guns and certainily write a follow up letter for your next appointment letting him know that you need him to consider other alternatives because you intend on being here for along time !
Love,
Debbie
Hi Jen
This is Debbie. In response to your post I've put in bold my responses
So I saw my UCLA radonc that performed my SBRT (not IMRT) radiation procedure to two larger lung mets last year. (Sorry, in my previous posts I said I had IMRT radiation done, but it's actually SBRT...Oops - I got them confused.) My radonc reviewed my July chest CT scan with me and noted that the scan looks relatively stable even though one of the non radiated nodules that they were tracking grew 3mm in 6 months. I expressed that since this is a slow growing disease, how is it considered stable if it's slowly growing overtime even when on Pazopanib...He states that overall since there are no new nodules in the lungs and the growth is very slight, that it is pretty stable. Still not sure what I think about that opinion...
1. I agree with"not sure what I think about that opinion"
Is your radonc your primary onocologist?
I also asked him if I should radiate the two left larger nodules...and he said not yet. Only if they are growing fast then he will consider radiating them using SBRT. He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger.
2. Where are they located in left lung, Jen ?
And remind us of their size?
If they seem to be under control, he doesn't want to put my body through more radiation unless it's very necessary to do so. He also said that getting rid of one or two larger nodules that are under control and not growing rapidly wouldn't necessarily prolong my overall survival (given that I still have about 100 other smaller nodules), so I shouldn't be undergoing radiation unless I have to. So we concluded that I'll get my next chest CT scan in a couple months and see what happens then. If there is a lot of growth in the mets, we will consider SBRT for me then.
3. Dr Rolle has reduced tumors to manageable numbers in lots of people in their lungs and why wouldn't the reduction of lung crowding , air flow preventing tumors prolong a persons life not to mention reduce the chances of the spreading from those now eliminated tumors ?
I also mentioned this website to him and that ASPS patients on this website go to Germany to get laser surgery on their lung mets using technology not available here...He didn't respond too positively to it because he doesn't like the idea of people going to another country paying cash to get procedures done when the US has other / similar options available to them ....(I'm obviously not relaying his responses very accurately but that's the gist of it..)
4. His more appropriate answer might of been I will look into it for you.
The removal of that many tumors from your lung and other patients like us cannot be performed in the states
I do trust him being my doctor and he's an excellent doctor...so I don't know if he can be somewhat biased or something..or maybe he's just unaware of the Dr. Rolle technology...not sure why he thinks that way...
Anyway, I'm starting to ramble...I guess it's hard to know what the right thing to do is and who to listen to in terms of what's the best thing for me to do...
5. Jen, you've done an excellant job of presenting your case to the doctor. You are not the first patient to encounter a doctor that does not believe that this disease can be managed surgeries so as to become a"chronic " disease rather than a disease that is an end to our lives.
Stick to your guns and certainily write a follow up letter for your next appointment letting him know that you need him to consider other alternatives because you intend on being here for along time !
Love,
Debbie
Last edited by D.ap on Mon Sep 02, 2013 11:34 am, edited 1 time in total.
Debbie
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jen from California (Dx 2009)
Dear Jen,
I continue to be concerned about your radiation oncologist's seemingly very nonchalant attitude with this very unpredictable and deadly disease.
"Relatively stable" mets that have grown 3mm. in six months despite your Pazopanib treatment will unfortunately most likely continue to grow and eventually the accumulated amount of growth will be significant and then the mets may not be able to be successfully ablated or treated with SBRT. I do agree with his concern about the risk of exposing your lungs to too much radiation with SBRT, but Cryoablation, which does not involve the use of radiation, could probably be successfully used to treat lung mets smaller than 3 Cm depending on their location. Granted, Cryo could not be used to treat all of your "about 100 other smaller nodules", but at least it could be used to shrink and destroy your two larger and most concerning mets eliminating the risk of them growing too large to be successfully resected or treated, and also helping to reduce your body's tumor burden. I find his negative attitude about pursuing treatment in Germany from Dr. Rolle to remove your large number of lung mets to be very perplexing, inexplicably biased, and arrogant since he obviously is not offering you any better/other similarly viable treatment option alternatives in the USA. I also remain concerned that he continues to only follow your lung mets with scans rather than also pro-actively scheduling critically important regular chest/abdominal/and pelvic CT's as well as at least a yearly brain MRI and full body scan to ensure that there is no metastatic spread to those areas of your body. His attitude that "He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger" seems to me to be dangerously "haphazard" in itself since the wait and watch approach does not work with this disease when mets are increasing to grow. I absolutely don't understand what possible benefit there is to waiting for mets to get larger before treating them!
I agree with Debbie that your oncologist's attitude and nonchalant and inadequate treatment approach does not reflect a belief in your chance of being able to successfully fight and survive this disease and he seems to be providing only palliative rather than pro-active care. Although you say that you "do trust him being my doctor and he's an excellent doctor..." I personally think that your trust may be misplaced and I question why an "excellent doctor" is not taking a more pro-active and aggressive diagnostic and treatment approach in fighting your disease. I would recommend seeking a second opinion from a sarcoma specialist who preferably has knowledge of, and experience with ASPS.
I certainly don't want to offend you by what I have said Jen, but I share because I care and I have a very strong opinion about this matter because during the past twelve+ years of our ASPS journey with Brittany I have seen too many precious young Lives tragically and needlessly lost as the result of negligent, naiive, and inadequate oncological care rather than due to the disease itself. I personally know of two separate current cases where two ASPS patients are heartbreakingly facing extremely difficult challenges and possibly the loss of their Lives because their doctors didn't provide adequate scanning to find and treat new mets at the smallest most treatable size. Doctors don't always know everything, they are human, and they can and do make mistakes. This is a battle, and we need to fight it with an aggressive approach and all of the knowledge, determination, and the very best and most up-to-date treatments available to us.
With caring concern, healing wishes, and continued Hope,
Bonni
I continue to be concerned about your radiation oncologist's seemingly very nonchalant attitude with this very unpredictable and deadly disease.
"Relatively stable" mets that have grown 3mm. in six months despite your Pazopanib treatment will unfortunately most likely continue to grow and eventually the accumulated amount of growth will be significant and then the mets may not be able to be successfully ablated or treated with SBRT. I do agree with his concern about the risk of exposing your lungs to too much radiation with SBRT, but Cryoablation, which does not involve the use of radiation, could probably be successfully used to treat lung mets smaller than 3 Cm depending on their location. Granted, Cryo could not be used to treat all of your "about 100 other smaller nodules", but at least it could be used to shrink and destroy your two larger and most concerning mets eliminating the risk of them growing too large to be successfully resected or treated, and also helping to reduce your body's tumor burden. I find his negative attitude about pursuing treatment in Germany from Dr. Rolle to remove your large number of lung mets to be very perplexing, inexplicably biased, and arrogant since he obviously is not offering you any better/other similarly viable treatment option alternatives in the USA. I also remain concerned that he continues to only follow your lung mets with scans rather than also pro-actively scheduling critically important regular chest/abdominal/and pelvic CT's as well as at least a yearly brain MRI and full body scan to ensure that there is no metastatic spread to those areas of your body. His attitude that "He doesn't think it is necessary to haphazardly radiate larger nodules just because they are larger" seems to me to be dangerously "haphazard" in itself since the wait and watch approach does not work with this disease when mets are increasing to grow. I absolutely don't understand what possible benefit there is to waiting for mets to get larger before treating them!
I agree with Debbie that your oncologist's attitude and nonchalant and inadequate treatment approach does not reflect a belief in your chance of being able to successfully fight and survive this disease and he seems to be providing only palliative rather than pro-active care. Although you say that you "do trust him being my doctor and he's an excellent doctor..." I personally think that your trust may be misplaced and I question why an "excellent doctor" is not taking a more pro-active and aggressive diagnostic and treatment approach in fighting your disease. I would recommend seeking a second opinion from a sarcoma specialist who preferably has knowledge of, and experience with ASPS.
I certainly don't want to offend you by what I have said Jen, but I share because I care and I have a very strong opinion about this matter because during the past twelve+ years of our ASPS journey with Brittany I have seen too many precious young Lives tragically and needlessly lost as the result of negligent, naiive, and inadequate oncological care rather than due to the disease itself. I personally know of two separate current cases where two ASPS patients are heartbreakingly facing extremely difficult challenges and possibly the loss of their Lives because their doctors didn't provide adequate scanning to find and treat new mets at the smallest most treatable size. Doctors don't always know everything, they are human, and they can and do make mistakes. This is a battle, and we need to fight it with an aggressive approach and all of the knowledge, determination, and the very best and most up-to-date treatments available to us.
With caring concern, healing wishes, and continued Hope,
Bonni
Re: Jen from California (Dx 2009)
Thanks Debbie & Bonni for your advice
To answer some of your questions...
My radonc is not my primary oncologist. But both my radonc and primary onc are at UCLA.
The two larger nodules in the left lung measure at:
Lingula nodule 14 x 12 mm
Perihilar left upper lobe nodule 13 x 11 mm
Regarding Dr. Rolle, I think I'm going to bring him up to my primary oncologist the next time I see him, and see what he thinks about it. I have a full body bone scan next week, and will meet with my onc to discuss the results after. I am also planning to get my abdominal / pelvic CT scan with contrast in 2 months -- at the same time when I get my chest CT scan done.
Do you have any literature about Dr. Rolle's laser resection technology / procedure that I could share with my onc to show him how he is offering something more advanced and effective in resecting large numbers of lung mets?
Also, when I asked my radonc about cryo option, he said SBRT is just as effective as cryo, but less invasive...which is why he thinks SBRT is better. Obviously he's biased since he's a radonc doc that does SBRT...and I feel like he fails to mention the cons of radiation side effects - such as pneumonitis (which I suffer from).
I agree with you Bonni - It's annoying/upsetting how some doctors can be nonchalant / biased ...He should be thoroughly discussing the pros and cons of each SBRT and cryo, as well as coming up with alternative treatment options if he doesn't agree with the Dr. Rolle option.
When I say he's an excellent radonc doctor, I guess it's because he successfully treated my two larger nodules in my right lung via SBRT.
I wish my old primary oncologist was still here at UCLA (Dr. William Tap). He was super thorough, caring, competent, patient, and takes as much time as the patient needs - and never made me feel like he's rushing through an appointment. He moved 2 years ago and is now the Section Chief of Sarcoma Dept at Memorial Sloan Kettering in NY. Too far from me
To answer some of your questions...
My radonc is not my primary oncologist. But both my radonc and primary onc are at UCLA.
The two larger nodules in the left lung measure at:
Lingula nodule 14 x 12 mm
Perihilar left upper lobe nodule 13 x 11 mm
Regarding Dr. Rolle, I think I'm going to bring him up to my primary oncologist the next time I see him, and see what he thinks about it. I have a full body bone scan next week, and will meet with my onc to discuss the results after. I am also planning to get my abdominal / pelvic CT scan with contrast in 2 months -- at the same time when I get my chest CT scan done.
Do you have any literature about Dr. Rolle's laser resection technology / procedure that I could share with my onc to show him how he is offering something more advanced and effective in resecting large numbers of lung mets?
Also, when I asked my radonc about cryo option, he said SBRT is just as effective as cryo, but less invasive...which is why he thinks SBRT is better. Obviously he's biased since he's a radonc doc that does SBRT...and I feel like he fails to mention the cons of radiation side effects - such as pneumonitis (which I suffer from).
I agree with you Bonni - It's annoying/upsetting how some doctors can be nonchalant / biased ...He should be thoroughly discussing the pros and cons of each SBRT and cryo, as well as coming up with alternative treatment options if he doesn't agree with the Dr. Rolle option.
When I say he's an excellent radonc doctor, I guess it's because he successfully treated my two larger nodules in my right lung via SBRT.
I wish my old primary oncologist was still here at UCLA (Dr. William Tap). He was super thorough, caring, competent, patient, and takes as much time as the patient needs - and never made me feel like he's rushing through an appointment. He moved 2 years ago and is now the Section Chief of Sarcoma Dept at Memorial Sloan Kettering in NY. Too far from me
Re: Jen from California (Dx 2009)
Hi Jen,
Did you try and contact my Onc gave you information on yet?
I think its time for a second opinion either with my surgeon or maybe go to Cedars and see Dr Forscher :/
My growing concern is their blatant lack of care an these Ons won't rush thru the appt ... an respond to your concerns and get a team involved to act on this! Cedars has a compassion care program also to help!
Its not a cold its sarcoma! I am going to inform others that ask me to not go to them now! Idiots!
Did you try and contact my Onc gave you information on yet?
I think its time for a second opinion either with my surgeon or maybe go to Cedars and see Dr Forscher :/
My growing concern is their blatant lack of care an these Ons won't rush thru the appt ... an respond to your concerns and get a team involved to act on this! Cedars has a compassion care program also to help!
Its not a cold its sarcoma! I am going to inform others that ask me to not go to them now! Idiots!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Jen from California (Dx 2009)
Dear Jen,
Thank you for the additional information. Your radiation oncologist seems to be failing to address the fact that SBRT causes you to have more radiation exposure to your already compromised lungs. On the other hand, Cryoablation is a minimally invasive procedure that is usually performed as an outpatient procedure under conscious sedation as opposed to a general anesthetic, and it has shown proven success for ASPS lung mets under 3 Cm. Cryoablation was never offered to us as a treatment option for Brittany's large unresectable lung mets nine years ago. At that time Brittany's very experienced, knowledgeable, and dedicated radiation oncologist was not familiar with this new cutting edge treatment, and it was not a treatment option that was available at the University of Washington Medical Center where he practices. We only knew about Cryoabaltion through our active networking and communication with the mother of another ASPS patient who had successfully undergone Cryo with Dr. Littrup who pioneered the use of Cryoablation for lung mets. Brittany's radiation oncologist was very skeptical about the procedure and not very supportive of our pursuing it, but yet he did not have any other treatment options to offer us other than the recommendation that we find an effective systemic treatment (none of which were available at that time) to try to shrink and destroy the unresectable and dangerously located large lung mets. Therefore we made the decision to disregard his skepticism and to pursue amd go forward with Cryo with Dr. Littrup which thankfully was very successful. It has been our experience in more than one situation with Brittany, that if a specific treatment is not available at the medical facility where the patient is being treated, the doctors don't share information about it because they don't seem to want the patient to seek treatment elsewhere. Additionally, we have found that many doctors don't/won't share information with doctors in other medical facilities about a treatment that they have found to be successful because they want the publishing rights to the information! This has all been a real education and eye opener to us which is why we relentlessly research and network with other ASPS patients from all over the World to ensure that we know as much as possible about any promising new treatments that might be available elsewhere since doctors usually don't have/take the time (nor sometimes the interest) to do the research. That is why shared information on this Board is so critically important and invaluable to all of us fighting this very rare disease, and why I so strongly encourage patients and families to more actively participate on the Board and share their anecdotal treatment information. If you are considering laser resection with Dr. Rolle, it is important that you not wait very long to make your decision and contact Dr. Rolle because if you do heartbreakingly develop mets anywhere else in your body, Dr. Rolle will not accept you for treatment. It is important to note and understand that laser resection with Dr. Rolle unfortunately does not ensure that you won't develop disease progression and new mets in your lungs and/or in other parts of your body as evidenced by Ivan's recent brain met and adrenal gland mets, but reducing the tumor burden of the mets in your lungs as Ivan has been so pro-active in doing, certainly seems to slow disease progression as also evidenced by his ten years of having had no mets beyond his lungs. I am grateful that you are now scheduled for a full body bone scan next week, as well as pelvic and abdominal scans when you have your next chest CT. My very best wishes and most positive thoughts are with you for very good scan results which show no new tumors in any of those areas. Take care Jen, and keep the Board updated with your scan results when you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Thank you for the additional information. Your radiation oncologist seems to be failing to address the fact that SBRT causes you to have more radiation exposure to your already compromised lungs. On the other hand, Cryoablation is a minimally invasive procedure that is usually performed as an outpatient procedure under conscious sedation as opposed to a general anesthetic, and it has shown proven success for ASPS lung mets under 3 Cm. Cryoablation was never offered to us as a treatment option for Brittany's large unresectable lung mets nine years ago. At that time Brittany's very experienced, knowledgeable, and dedicated radiation oncologist was not familiar with this new cutting edge treatment, and it was not a treatment option that was available at the University of Washington Medical Center where he practices. We only knew about Cryoabaltion through our active networking and communication with the mother of another ASPS patient who had successfully undergone Cryo with Dr. Littrup who pioneered the use of Cryoablation for lung mets. Brittany's radiation oncologist was very skeptical about the procedure and not very supportive of our pursuing it, but yet he did not have any other treatment options to offer us other than the recommendation that we find an effective systemic treatment (none of which were available at that time) to try to shrink and destroy the unresectable and dangerously located large lung mets. Therefore we made the decision to disregard his skepticism and to pursue amd go forward with Cryo with Dr. Littrup which thankfully was very successful. It has been our experience in more than one situation with Brittany, that if a specific treatment is not available at the medical facility where the patient is being treated, the doctors don't share information about it because they don't seem to want the patient to seek treatment elsewhere. Additionally, we have found that many doctors don't/won't share information with doctors in other medical facilities about a treatment that they have found to be successful because they want the publishing rights to the information! This has all been a real education and eye opener to us which is why we relentlessly research and network with other ASPS patients from all over the World to ensure that we know as much as possible about any promising new treatments that might be available elsewhere since doctors usually don't have/take the time (nor sometimes the interest) to do the research. That is why shared information on this Board is so critically important and invaluable to all of us fighting this very rare disease, and why I so strongly encourage patients and families to more actively participate on the Board and share their anecdotal treatment information. If you are considering laser resection with Dr. Rolle, it is important that you not wait very long to make your decision and contact Dr. Rolle because if you do heartbreakingly develop mets anywhere else in your body, Dr. Rolle will not accept you for treatment. It is important to note and understand that laser resection with Dr. Rolle unfortunately does not ensure that you won't develop disease progression and new mets in your lungs and/or in other parts of your body as evidenced by Ivan's recent brain met and adrenal gland mets, but reducing the tumor burden of the mets in your lungs as Ivan has been so pro-active in doing, certainly seems to slow disease progression as also evidenced by his ten years of having had no mets beyond his lungs. I am grateful that you are now scheduled for a full body bone scan next week, as well as pelvic and abdominal scans when you have your next chest CT. My very best wishes and most positive thoughts are with you for very good scan results which show no new tumors in any of those areas. Take care Jen, and keep the Board updated with your scan results when you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Jen from California (Dx 2009)
Jen
Thanks for the response
ICUREASPS.com home page has under library/treatments a paper written by Dr. Rolle for any good doctor to read and evaluate
Will write more later
Love
Debbie
Thanks for the response
ICUREASPS.com home page has under library/treatments a paper written by Dr. Rolle for any good doctor to read and evaluate
Will write more later
Love
Debbie
Debbie
Re: Jen from California (Dx 2009)
Hi Amanda,Amanda wrote:Hi Jen,
Did you try and contact my Onc gave you information on yet?
I think its time for a second opinion either with my surgeon or maybe go to Cedars and see Dr Forscher :/
My growing concern is their blatant lack of care an these Ons won't rush thru the appt ... an respond to your concerns and get a team involved to act on this! Cedars has a compassion care program also to help!
Its not a cold its sarcoma! I am going to inform others that ask me to not go to them now! Idiots!
The first oncologist I saw back in 2010 after I got diagnosed was Dr. Forscher at Cedars. I saw him about 2-3 times, but I felt like I had to pry information from him and keep asking him questions to get info from him, rather than him just giving me thorough advice. That's why I switched to see Dr. Tap at UCLA (now at Sloan Kettering). After Dr. Tap left, I went to his UCLA colleague - Dr. Chmielowski.
I may consider going back to see Dr.Forscher, but Cedars is more expensive than UCLA I believe...and I don't know if I want to pay more than I already am even though I have insurance....=/ I guess I'll see what my current onc says after I see him in a couple weeks.
How are you doing otherwise, Amanda? Weren't you going to have surgery soon..?
Re: Jen from California (Dx 2009)
Hi Jen,
I get my scans at Dr Forscher on the 10th an then taking disk to Dr Foshag an i think unless i can push it out a month i will be having surgery in about three weeks. My son is back in school an i want to wait till he is settled in and maybe do it over winter break. But, he may say no... I am so sick of this cancer kidnapping peoples lifes!
If you like your Onc thats important but i am very worried how is isnt acting an a few other things you said
Did you try an call Dr Foshag he is the lung surgeon an is a LOVE
He will act an also tell you what he thinks and listen.. be ready to wait he takes his time with his patients...
I hope you are keeping cool its not even 7AM here an so dam hot an humid...
How are you feeling an what are you doing thru this heat?
I get my scans at Dr Forscher on the 10th an then taking disk to Dr Foshag an i think unless i can push it out a month i will be having surgery in about three weeks. My son is back in school an i want to wait till he is settled in and maybe do it over winter break. But, he may say no... I am so sick of this cancer kidnapping peoples lifes!
If you like your Onc thats important but i am very worried how is isnt acting an a few other things you said
Did you try an call Dr Foshag he is the lung surgeon an is a LOVE
He will act an also tell you what he thinks and listen.. be ready to wait he takes his time with his patients...I hope you are keeping cool its not even 7AM here an so dam hot an humid...
How are you feeling an what are you doing thru this heat?
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Jen from California (Dx 2009)
Amanda - Luckily I have AC in my apartment so that's a big help in staying cool in this hot weather
Anyway, I got my full body bone scan results back and it looks fine. Here are the results:
IMPRESSION:
1. No definite scintigraphic evidence of metastatic disease to the bones.
2. A small focus of mild tracer uptake is note on posterior (and to a
lesser degree anterior) images in the region of the right 8th rib. Given
the absence of bone findings on recent CT and the localization of
irradiated metastatic disease in the lungs in this region, the uptake
likely reflects pulmonary changes rather than metastasis to the bones.
Regarding NOTE 2, it seems like the tracer uptake at the 8th rib is due to me getting radiation to my 2 nodules in my lower right lung last year. So it seems like I should be fine (regarding the bones) and the uptake isn't due to a met. The report didn't mention anything about my right fractured rib that my chest CT scan noted in April 2013. I don't know if full body bone scans would shed a lot of light on fractured ribs...i would assume so? Maybe my fractured rib is better now...
hope all is well with everyone.
Anyway, I got my full body bone scan results back and it looks fine. Here are the results:
IMPRESSION:
1. No definite scintigraphic evidence of metastatic disease to the bones.
2. A small focus of mild tracer uptake is note on posterior (and to a
lesser degree anterior) images in the region of the right 8th rib. Given
the absence of bone findings on recent CT and the localization of
irradiated metastatic disease in the lungs in this region, the uptake
likely reflects pulmonary changes rather than metastasis to the bones.
Regarding NOTE 2, it seems like the tracer uptake at the 8th rib is due to me getting radiation to my 2 nodules in my lower right lung last year. So it seems like I should be fine (regarding the bones) and the uptake isn't due to a met. The report didn't mention anything about my right fractured rib that my chest CT scan noted in April 2013. I don't know if full body bone scans would shed a lot of light on fractured ribs...i would assume so? Maybe my fractured rib is better now...
hope all is well with everyone.
Re: Jen from California (Dx 2009)
Jen
Sounds like great news!
Thanks for sharing.
On another note, weather is great in the Midwest
53 degrees right now and a high of 78 today
What's on your schedule after this scan ?
Mean while enjoy the good news and have a great weekend
Love
Debbie
Sounds like great news!
Thanks for sharing.
On another note, weather is great in the Midwest
53 degrees right now and a high of 78 today
What's on your schedule after this scan ?
Mean while enjoy the good news and have a great weekend
Love
Debbie
Debbie
Re: Jen from California (Dx 2009)
Jen
You posted the following
I appreciate your input Bonni. I read your postings about Brittany's RFA experience on the other postings under RFA as well. After reading that, I agree with you and would feel more comfortable to pursue cryo rather than RFA. I will still go to see my UCLA radonc next Friday just to see what his thoughts are on the 2 left larger lung mets, and ask for his thoughts about cryo as an alternative.
Not trying to ruin your day but what did he say about insurance coverage ?
A question to present to your primary when you see he next week when you talk about Ct scans to pelvic area
Debbie
You posted the following
I appreciate your input Bonni. I read your postings about Brittany's RFA experience on the other postings under RFA as well. After reading that, I agree with you and would feel more comfortable to pursue cryo rather than RFA. I will still go to see my UCLA radonc next Friday just to see what his thoughts are on the 2 left larger lung mets, and ask for his thoughts about cryo as an alternative.
Not trying to ruin your day but what did he say about insurance coverage ?
A question to present to your primary when you see he next week when you talk about Ct scans to pelvic area
Debbie
Debbie
-
cachabamba10
- New Member
- Posts: 79
- Joined: Wed Sep 23, 2009 3:20 pm
- Location: Fort Smith, Arkansas USA
Re: Jen from California (Dx 2009)
Sorry I did not read back enough to understand the insurance problem you are having with RFA or Cryo. Dr. Litrupp in Detroit files insurance paperwork as RFA even though he does Cryo, this is to better manage your insurance and get the insurance companies to pay. I have had close to 6 cryos and they have all been paid by insurance. 4 were filed as cryo the remaining were filed as RFA due to insurance concerns.
Jen you can always send the scans to Barb dr's Litrupp's assistant to get a understanding of what they could do for you. You DO not need the yes or okay from your onc. The reason I say this, most of the time it takes a long time for Barb to get back to you once you have send your scans. You can do the same for Dr. Rolle. The only cost to you is the Fed Ex fees. It is extremely important that you get to know both Dr. Rolles and Dr. Littrups team. This way when you need them for a emergency, you will have their phone numbers and know first hand how to get a hold of them.
From what I understand you have time, as right now you are waiting for two months and then talk to your dr. after getting scans. You can use this time to get cd's sent to both Dr. Littrup and Dr. Rolle and see what they think. By the time, you see your doc in a couple of months you will have the answer from both Litrupp and Rolle. You can then have all this amazing info at your disposal and talk with your oncologist and come up with a plan.
Sorry if I misspelled any words, I just had a little bit of time and wanted to post and I hope this helps. Will be praying for you and everyone else in the board.
Sincerely;
Mario
Jen you can always send the scans to Barb dr's Litrupp's assistant to get a understanding of what they could do for you. You DO not need the yes or okay from your onc. The reason I say this, most of the time it takes a long time for Barb to get back to you once you have send your scans. You can do the same for Dr. Rolle. The only cost to you is the Fed Ex fees. It is extremely important that you get to know both Dr. Rolles and Dr. Littrups team. This way when you need them for a emergency, you will have their phone numbers and know first hand how to get a hold of them.
From what I understand you have time, as right now you are waiting for two months and then talk to your dr. after getting scans. You can use this time to get cd's sent to both Dr. Littrup and Dr. Rolle and see what they think. By the time, you see your doc in a couple of months you will have the answer from both Litrupp and Rolle. You can then have all this amazing info at your disposal and talk with your oncologist and come up with a plan.
Sorry if I misspelled any words, I just had a little bit of time and wanted to post and I hope this helps. Will be praying for you and everyone else in the board.
Sincerely;
Mario
Re: Jen from California (Dx 2009)
Hi Jen
Its getting hot again dammit lol
YAy for the scan going well!
An i reading this right that they showed some thing in the 8th rib? Thats where the dam sarcoma went .. to the right side either rib! They said it destroyed my rib and made it break! I hope the rib is om now an no longer broken.. what a trip though same side an rib lol
My surgery will be the first or second week of October...
I had a great visit with Dr Foshag he is the one i told you about
How big are the larger mets you have?
BTW Obama care is helping a friend of mine now go to Ceders an it may help you also.. have you looked into that yet?
Its getting hot again dammit lol
YAy for the scan going well!
An i reading this right that they showed some thing in the 8th rib? Thats where the dam sarcoma went .. to the right side either rib! They said it destroyed my rib and made it break! I hope the rib is om now an no longer broken.. what a trip though same side an rib lol
My surgery will be the first or second week of October...
I had a great visit with Dr Foshag he is the one i told you about
How big are the larger mets you have?
BTW Obama care is helping a friend of mine now go to Ceders an it may help you also.. have you looked into that yet?
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda