Lung: Laser Surgery
Re: Lung: Laser Surgery
I do not really see the point in waiting to remove the primary being concern with the lung mets - he can have the resection of the primary on the any given day and still be on the chemotherapy for the lung mets or just have a surgery after two courses of the chemotherapy and see if there is the effect of the chemotherapy. It is hard to speculate if Dr.Rolle would accept Anthony as he decides based on the lungs CT scan and a situation with the spread. You should probably now wait for the brain MRI result. Are there a lot of brain mets?
Olga
Re: Lung: Laser Surgery
Olga--
There are two brain mets. He had whole brain radiation (which he normally responds well too) and depending on the result of the scans - he may do gamma knife. I agree about taking out the primary. His doctor thought we may have to put chemo on hold if we take out the primary, but I'll discuss it with him again and see if we can get a move on it! Thank you so much for your advice. It's truly appreciated.
There are two brain mets. He had whole brain radiation (which he normally responds well too) and depending on the result of the scans - he may do gamma knife. I agree about taking out the primary. His doctor thought we may have to put chemo on hold if we take out the primary, but I'll discuss it with him again and see if we can get a move on it! Thank you so much for your advice. It's truly appreciated.
Re: Lung: Laser Surgery
I've posted a patient's perspective about a laser surgery and post-op here http://www.cureasps.org/forum/viewtopic.php?f=7&t=333
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Re: Lung: Laser Surgery
I was wondering if this procedure got approved in Canada. My husband was diagnosed in June 2006 and has been noted as having "innumerable tumors" in his lungs. He has most recently been on 3 cycles of Sutent with mild growth in his lungs. It is increasingly harder for him to walk from room to room, as he will get out of breathe. Please post with any info, thanks!
Re: Lung: Laser Surgery
No, it is not approved in Canada and in US yet - they started a process but it is slow and very expensive, I hope that Dr.Rolle will not loose his desire to go trough all the stages. And even if it was recently approved - it would not give a real option for the patients today as it takes a lot of time and work to became a thoracic surgeon skilled in this specific technique and I would not go for a surgery by someone who has done less then 50 cases (I understand that someone has to be these first 50 cases...). So as of now (March 2009) people have to go to Germany to get this surgery.
Olga
Successful Appeal Blue Cross - Covering Rolle's Laser surger
Hi everyone, Some people are headed over to Germany and I wanted to post our successful appeal to Blue Cross for covering this procedure. It really ticks me off that Blue Cross would fail to cover something like this although medicine insurance covers treatments of conditions such as irritability/ dysphoria, school avoidance in children, etc. So why don't they see fit to cover a surgery that potentially adds years of survival or possible cure to something like metastatic alveolar soft part sarcoma? We sent the bill in for $17,000 some odd dollars, and after just a first level appeal (the letter pasted below), Blue Cross paid some $15,000 of the claim. We were very grateful for that. Of course we did not submit a claim for our trips to Germany or costs of parents staying in Germany- but rather all conventional allowable hospital costs.
We heard the claim went to external review and the external reviewer recommended paying the claim. It may have intimidated them that both parents are doctors. It is very unfair the way the system exists now.
With our daughter's latest surgery, we asked for pre-authorization for her next surgery and Premera Blue Cross again denied it, and we just finished writing an appeal for that - if it is successful I will post our proposal under this topic, too. They must respond within 30 days. Health insurance companies make money by routinely rejecting treatments for rare cancers. The evidence is totally on our side. If they decline this second claim, we are prepared to go to a level 2 appeal and would consider litigation. Unfortunately lawsuits may be the only way to assure sweeping changes within insurance companies.
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December 2, 2008
Premera Blue Cross Ref Number:
Attention Member Appeal Claim Number:
PO Box 91102 Subscriber ID:
Seattle WA 98111-9202 Group #:
Subscriber Name:
Member Name:
Dear Sir or Madam:
We wish to appeal Premera's denial to cover our daughter's recent hospitalization for laser resection of her lung metastases.
There is a well established literature that complete resection of soft tissue sarcoma – either primary alone or primary and all visible lung metastases-- is the only chance for cure and best chance for long term remission.
*** had her pelvic primary (alveolar soft part sarcoma) removed January 2008 with negative margins at UCLA.
As the only sites for spread were lungs, in April 2008 she underwent conventional thoracotomy to remove lung nodules on the left because of an abrupt enlargement of one nodule that threatened her heart and main bronchus. This resulted in a left upper lobe lingular and anterior segmentectomy measuring 13x7x3 cm as well as multiple wedge resections in the lower lobe. This procedure resulted in a decline of left lung function by approximately 30%.
After *** had recovered from this operation, we consulted with our surgeon at Seattle Childrens (Dr. Kenneth Gow) about a thoracotomy, only to learn that he felt conventional surgery was no longer feasible. Because some of ***'s nodules were central and would require too much loss of normal lung by conventional techniques, this would render her incurable and susceptible to increasing disability due to progressive enlargement of lung metastases. We also
Page 2
consulted Dr. Jay Lee, the surgeon at UCLA who performed her left thoracotomy and he also felt she was no longer a candidate for resection for the same reasons. With no other options, and with Dr. Gow's support, we consulted with Dr. Axel Rolle about the possibility of laser resection on the right. He felt he could remove her metastases with significantly less loss of lung than her previous surgery. As a result, *** underwent successful remove of 26 lung metastases on that side (Operative note and Discharge summary enclosed).
We proceeded with laser resection of ***'s lung nodules because they were her only chances for cure and best chance for long term remission. The surgery is not experimental. It is an established procedure in Europe (over 80% of German thoracic centers) and also approved here in the United States and Canada. Laser resection of lung nodules was approved in the United States by the FDA in the 1990's after Dr. Joseph LoCicero (currently Chief of Surgical Oncology, Maimonides Medical Center, Brooklyn NY) published his paper Laser-assisted parenchyma-sparing pulmonary resection. (J Thorac Cardiovasc Surg 1990, 100 (4) 632-3).
Excerpt: “Twelve lesions were deep seated, could not have been removed by wedge resection or segmentectomy, and would have necessitated lobectomy without this technique. With the laser, the lesion could be precisely excised with minimal loss of lung parenchyma.”
From the National Cancer Institute website on Laser use in Cancer:
“Laser light is a light of such high intensity and narrow beam that it can be used to do precise surgery to remove cancer or precancerous growths...Laser therapy also has several limitations. Surgeons must have specialized training before they can do laser therapy, and strict safety precautions must be followed. Also laser therapy is expensive and requires bulky equipment...”
Alveolar soft part sarcoma is a rare early metastasizing cancer that has a predilection for spread to the lungs. Aggressive metastectomy has been associated with long term survival (8+ years) in many studies if the all visible tumor is removed (J Pediat Surg 2006. 41: 187-193, Med Pediat Onc 1996. 26:81-4, Anticancer Res 2007. 27: 2897-2902. Ann Surgery 1999. 229(5) 602-12, Gan To Kagaku Ryoho 2004. 31: 1319-23). In one series it was suggested that a patient in ***'s condition might have a 75% of surviving more than 5-10 years after a properly done surgery.
Dr. Axel Rolle has the most extensive experience with pulmonary metastectomy by laser of anyone in the world. He started using the laser in 1995. In a recent article he reported, “Six hundred thirty-two metastases (6.3 per patient, range 1 to 124 were resected. Despite 41% centrally located metastases, tumor resections were possible in 95% of patients with only a 5% lobectomy rate (Ann Thorac Surg 2002. 74: 865-9). His most recent clinical series detailed his experience with 328 consecutive patients with mulitple laser metastasectomies.
Dr. Rolle has received international recognition for his expertise with laser surgical technique, He is Medical Director and Chief of the specialty lung hospital Center for Lung and Thoracic Surgery in Dresden / Coswig Germany, winner of the prestigious Berthold Leibinger Innovationspreis Prize. He is also the sitting President of the German Society for Thoracic Surgery.
Page 3
In summary, we would sincerely request that Premera reconsider its decision to deny coverage for our daughter's lung metastectomy. This was the only possible option available for saving her life, and the surgery was a tremendous success. We can provide additional documentation upon request. In addition, we would authorize any representatives of Premera to contact her physicians and surgeons.
Thank you for your time and consideration,
*******************
Enclosures: (we copied off all of the following & in some cases highlighted quoted sections with a yellow highlighter)
Clinic report from Dr. Kenneth Gow 08/08
UCLA Path Report (1st Thoracotomy – Left)
Pulmonary metastases from soft tissue...
Pulmonary metastasectomy for osteosarcomas and soft tissue sarcomas...
Surgery for multiple lung metastases from alveolar ...
Clinical prsentation, treatment, and outcome...
Alveolar soft part sarcoma in adults...
Laser resection technique...
Is surgery for multiple lung metastases...
Hospital Discharge Summary for – Germany
Pathology Report for - Germany
p.s. Permission is given to share this with any family who you believe might benefit when applying for an insurance appeal for their cancer. I do not want to post it on a non-password protected internet site as it does contain some identifying information. Thanks and blessings to you all -
We heard the claim went to external review and the external reviewer recommended paying the claim. It may have intimidated them that both parents are doctors. It is very unfair the way the system exists now.
With our daughter's latest surgery, we asked for pre-authorization for her next surgery and Premera Blue Cross again denied it, and we just finished writing an appeal for that - if it is successful I will post our proposal under this topic, too. They must respond within 30 days. Health insurance companies make money by routinely rejecting treatments for rare cancers. The evidence is totally on our side. If they decline this second claim, we are prepared to go to a level 2 appeal and would consider litigation. Unfortunately lawsuits may be the only way to assure sweeping changes within insurance companies.
--------
December 2, 2008
Premera Blue Cross Ref Number:
Attention Member Appeal Claim Number:
PO Box 91102 Subscriber ID:
Seattle WA 98111-9202 Group #:
Subscriber Name:
Member Name:
Dear Sir or Madam:
We wish to appeal Premera's denial to cover our daughter's recent hospitalization for laser resection of her lung metastases.
There is a well established literature that complete resection of soft tissue sarcoma – either primary alone or primary and all visible lung metastases-- is the only chance for cure and best chance for long term remission.
*** had her pelvic primary (alveolar soft part sarcoma) removed January 2008 with negative margins at UCLA.
As the only sites for spread were lungs, in April 2008 she underwent conventional thoracotomy to remove lung nodules on the left because of an abrupt enlargement of one nodule that threatened her heart and main bronchus. This resulted in a left upper lobe lingular and anterior segmentectomy measuring 13x7x3 cm as well as multiple wedge resections in the lower lobe. This procedure resulted in a decline of left lung function by approximately 30%.
After *** had recovered from this operation, we consulted with our surgeon at Seattle Childrens (Dr. Kenneth Gow) about a thoracotomy, only to learn that he felt conventional surgery was no longer feasible. Because some of ***'s nodules were central and would require too much loss of normal lung by conventional techniques, this would render her incurable and susceptible to increasing disability due to progressive enlargement of lung metastases. We also
Page 2
consulted Dr. Jay Lee, the surgeon at UCLA who performed her left thoracotomy and he also felt she was no longer a candidate for resection for the same reasons. With no other options, and with Dr. Gow's support, we consulted with Dr. Axel Rolle about the possibility of laser resection on the right. He felt he could remove her metastases with significantly less loss of lung than her previous surgery. As a result, *** underwent successful remove of 26 lung metastases on that side (Operative note and Discharge summary enclosed).
We proceeded with laser resection of ***'s lung nodules because they were her only chances for cure and best chance for long term remission. The surgery is not experimental. It is an established procedure in Europe (over 80% of German thoracic centers) and also approved here in the United States and Canada. Laser resection of lung nodules was approved in the United States by the FDA in the 1990's after Dr. Joseph LoCicero (currently Chief of Surgical Oncology, Maimonides Medical Center, Brooklyn NY) published his paper Laser-assisted parenchyma-sparing pulmonary resection. (J Thorac Cardiovasc Surg 1990, 100 (4) 632-3).
Excerpt: “Twelve lesions were deep seated, could not have been removed by wedge resection or segmentectomy, and would have necessitated lobectomy without this technique. With the laser, the lesion could be precisely excised with minimal loss of lung parenchyma.”
From the National Cancer Institute website on Laser use in Cancer:
“Laser light is a light of such high intensity and narrow beam that it can be used to do precise surgery to remove cancer or precancerous growths...Laser therapy also has several limitations. Surgeons must have specialized training before they can do laser therapy, and strict safety precautions must be followed. Also laser therapy is expensive and requires bulky equipment...”
Alveolar soft part sarcoma is a rare early metastasizing cancer that has a predilection for spread to the lungs. Aggressive metastectomy has been associated with long term survival (8+ years) in many studies if the all visible tumor is removed (J Pediat Surg 2006. 41: 187-193, Med Pediat Onc 1996. 26:81-4, Anticancer Res 2007. 27: 2897-2902. Ann Surgery 1999. 229(5) 602-12, Gan To Kagaku Ryoho 2004. 31: 1319-23). In one series it was suggested that a patient in ***'s condition might have a 75% of surviving more than 5-10 years after a properly done surgery.
Dr. Axel Rolle has the most extensive experience with pulmonary metastectomy by laser of anyone in the world. He started using the laser in 1995. In a recent article he reported, “Six hundred thirty-two metastases (6.3 per patient, range 1 to 124 were resected. Despite 41% centrally located metastases, tumor resections were possible in 95% of patients with only a 5% lobectomy rate (Ann Thorac Surg 2002. 74: 865-9). His most recent clinical series detailed his experience with 328 consecutive patients with mulitple laser metastasectomies.
Dr. Rolle has received international recognition for his expertise with laser surgical technique, He is Medical Director and Chief of the specialty lung hospital Center for Lung and Thoracic Surgery in Dresden / Coswig Germany, winner of the prestigious Berthold Leibinger Innovationspreis Prize. He is also the sitting President of the German Society for Thoracic Surgery.
Page 3
In summary, we would sincerely request that Premera reconsider its decision to deny coverage for our daughter's lung metastectomy. This was the only possible option available for saving her life, and the surgery was a tremendous success. We can provide additional documentation upon request. In addition, we would authorize any representatives of Premera to contact her physicians and surgeons.
Thank you for your time and consideration,
*******************
Enclosures: (we copied off all of the following & in some cases highlighted quoted sections with a yellow highlighter)
Clinic report from Dr. Kenneth Gow 08/08
UCLA Path Report (1st Thoracotomy – Left)
Pulmonary metastases from soft tissue...
Pulmonary metastasectomy for osteosarcomas and soft tissue sarcomas...
Surgery for multiple lung metastases from alveolar ...
Clinical prsentation, treatment, and outcome...
Alveolar soft part sarcoma in adults...
Laser resection technique...
Is surgery for multiple lung metastases...
Hospital Discharge Summary for – Germany
Pathology Report for - Germany
p.s. Permission is given to share this with any family who you believe might benefit when applying for an insurance appeal for their cancer. I do not want to post it on a non-password protected internet site as it does contain some identifying information. Thanks and blessings to you all -
Re: Lung: Laser Surgery
Dear 'F',
Can't thank you enough for sharing this personal appeal -- this will benefit all of us -- hope Olga will put it under insurance or other pertinent topic --
heartfelt thanks,
Beth
Can't thank you enough for sharing this personal appeal -- this will benefit all of us -- hope Olga will put it under insurance or other pertinent topic --
heartfelt thanks,
Beth
Re: Lung: Laser Surgery
Hi, I am copying this from another thread in case it helps others contemplating the surgery or those who are trying to make sense of their postop scans after having the Rolle laser resection.
----
Re: Rolle's laser work, I can only really tell you our impression because we personally looked at and mapped all of hers heading into surgery and after. Radiology reports are unreliable to go on...too vague.
Rolle removed more than we counted on spiral CT - a pretty good feat all-in-all, but after each surgery we noticed that he missed 1 nodule (fairly large one, too - but in a similar locations and deep - so that we think it may be a common place for them to be missed by his surgery..I think the blood vessels get in the way of feeling them). We did see some tiny ones grow after surgery..but when we went back to earlier scans, they were there, but just a speck and not distinguishable from normal tiny blood vessels.
The dilemma re: timing on metastasectomy, is that because the surgery seems to have a favorable course on the growth of disease (it slows growth down), do you do it early ...which would slow things down quicker, or do you wait because there may be small mets that are not detectable yet that will only become visible (and removable) by later surgery? I don't know if there is an ideal single answer to this question, but we chose to do the surgery as early as possible - and we know that she can have a 're-do' (at least that's what Rolle has said) if she needs to in the future. In the meantime, we have done clinical trials like ARQ197 and the R1507 that we hope would reduce microscopic tumor disease, new mets etc.
We definitely saw the growth of mets on the same side slow down after lung surgery (and probably to a lesser extent the opposite side), but at least in our daughter's case the growth did not completely stop, though it was pretty slow. There is data that repeated lung metastasectomy has a beneficial effect on the survival of sarcomas though - so the surgery can be seen as reducing tumor burden regardless if the resection is 'complete', and in some cases progressing to long term remission or clearance of disease with repeated surgery.
We never saw rebound increased growth (quick growth) after lung surgery. We only saw rebound increased growth after her large pelvic primary was removed. It might be that rebound effects could occur after surgery if a lung met was especially large. That may have happened to Lucio as I think the lung met that was removed was 4 cm. The kind of growth we saw in residual mets - was usually pretty slow (1 mm or so every few months) - but when Rolle missed an 8 mm or so one, that continued to grow - and now those are the ones (over 1 cm) that allowed her to get into her current R1507 trial. Her Rolle lung surgeries are now 9 months ago and 1 year and 2 months ago. Neither of those mets are in 'dangerous positions', but we don't want to let them get too big if we can help it. We are glad she only has one of those on either side and not 20.
Re: what you see on scans after Rolle surgery - we could see e.g. a met in the preop scans, and then post op, it was gone, and then a line of laser scar could be tracked to the outside of the lung. Over months these small scar lines tended to disappear, but on some of the really deep mets that were removed, 'K' still has a significant residual line or stellate scarring. It is usually easy to distinguish scar from round or oval mets, but occasionally it is a little confusing.
----
Re: Rolle's laser work, I can only really tell you our impression because we personally looked at and mapped all of hers heading into surgery and after. Radiology reports are unreliable to go on...too vague.
Rolle removed more than we counted on spiral CT - a pretty good feat all-in-all, but after each surgery we noticed that he missed 1 nodule (fairly large one, too - but in a similar locations and deep - so that we think it may be a common place for them to be missed by his surgery..I think the blood vessels get in the way of feeling them). We did see some tiny ones grow after surgery..but when we went back to earlier scans, they were there, but just a speck and not distinguishable from normal tiny blood vessels.
The dilemma re: timing on metastasectomy, is that because the surgery seems to have a favorable course on the growth of disease (it slows growth down), do you do it early ...which would slow things down quicker, or do you wait because there may be small mets that are not detectable yet that will only become visible (and removable) by later surgery? I don't know if there is an ideal single answer to this question, but we chose to do the surgery as early as possible - and we know that she can have a 're-do' (at least that's what Rolle has said) if she needs to in the future. In the meantime, we have done clinical trials like ARQ197 and the R1507 that we hope would reduce microscopic tumor disease, new mets etc.
We definitely saw the growth of mets on the same side slow down after lung surgery (and probably to a lesser extent the opposite side), but at least in our daughter's case the growth did not completely stop, though it was pretty slow. There is data that repeated lung metastasectomy has a beneficial effect on the survival of sarcomas though - so the surgery can be seen as reducing tumor burden regardless if the resection is 'complete', and in some cases progressing to long term remission or clearance of disease with repeated surgery.
We never saw rebound increased growth (quick growth) after lung surgery. We only saw rebound increased growth after her large pelvic primary was removed. It might be that rebound effects could occur after surgery if a lung met was especially large. That may have happened to Lucio as I think the lung met that was removed was 4 cm. The kind of growth we saw in residual mets - was usually pretty slow (1 mm or so every few months) - but when Rolle missed an 8 mm or so one, that continued to grow - and now those are the ones (over 1 cm) that allowed her to get into her current R1507 trial. Her Rolle lung surgeries are now 9 months ago and 1 year and 2 months ago. Neither of those mets are in 'dangerous positions', but we don't want to let them get too big if we can help it. We are glad she only has one of those on either side and not 20.
Re: what you see on scans after Rolle surgery - we could see e.g. a met in the preop scans, and then post op, it was gone, and then a line of laser scar could be tracked to the outside of the lung. Over months these small scar lines tended to disappear, but on some of the really deep mets that were removed, 'K' still has a significant residual line or stellate scarring. It is usually easy to distinguish scar from round or oval mets, but occasionally it is a little confusing.
Re: Lung: Laser Surgery
Contact information for specialized lung surgery hospital in Germany (as of Jan 2022)
admin dealing with the requests from the international patients:
Miss Schorm
schorm@fachkrankenhaus-coswig.de
Tel. :+49 3523 65 419
admin dealing with the requests from the international patients:
Miss Schorm
schorm@fachkrankenhaus-coswig.de
Tel. :+49 3523 65 419
Olga