Sorry - we didn't know that so many people were leaving messages. We didn't receive them.
We are moving all the posts here to our Cancer Pages HERE. Please ask questions through our forum HERE.
We are not cancer doctors, but we are parents who walked this cancer road. We're happy to answer questions to the best of our knowledge about :
Molecular Profiling for Cancer
Laser Lung Surgery for Metastases with Dr Axel Rolle
Surviving the Financial Costs of Cancer
More to Follow!
Tuesday, May 27, 2014
Saturday, October 30, 2010
Sarcoma - Metastases to the Heart
Although heart metastases are identified in 25% of people who die of cancer, detection and diagnoses of heart metastases in living patients are surprisingly low (1% of pediatric sarcoma patients). We wanted to share this information because although most cancer patients feel as if they are having frequent tests and imaging to look for new signs of cancer, cardiac metastases are commonly missed when standard studies only include conventional CT, MRI, and PET scans.
Tumors in the heart can come from neighboring lung metastases that travel up through the lung vessels in to the heart, direct extension from metastases in the lung, or from mets that arrive from the bloodstream.
If you have a met to the heart, you want to have it surgically removed as soon as safely possible because it can become deadly whether your cancer responds well to treatment or not. If the tumor invades the heart, then it can cause the heart to stop pumping well; but other causes of mischief include obstructing blood flow into or out of the heart, or breaking off and forming metastases to other parts of the body like the brain.
We wanted to post about heart metastases because we found out about them only because our dd was on a Phase I / II trial that required an ECHO. The mass was seen on ECHO - and although it was about the size of a golf ball, it didn't block any of the valves - and there were no changes in EKG or abnormal sounds that the cardiologist could hear. The important point is your doctor should have a high index of suspicion to find these - and the screening study is likely to be an ECHO. We had been watching our dd's lung mets - and thought these were still fairly far (1-2 cm) from the main pulmonary vessels by chest CT - but when we didn't know is that they can sneak into small pulmonary veins that aren't well seen on chest CTs (the resolution is too small) and travel into the heart. On Chest CT the heart is bright white - so intracardiac tumors can't be seen.
Recently we heard that young woman with cardiac tumors seemed to be responding to a promising clinical trials medication, but she unexpectedly died. The problem with medical treatments and cardiac tumors is that even when a cancer responds to treatment, a tumor in the heart can be just as deadly.
Our dd had open heart surgery a few weeks ago and the tumor was removed. The surgery was surprisingly quick (13 minutes on cardiac bypass) and her recovery was quick too (discharged on the 3rd day of after the operation). She was able to be back at school in less than 2 weeks and required no pain medication by then. Her recovery was much quicker than when she had a thoracotomy. As tough as it is to face difficult news such as a heart metastasis, the earlier diagnosis the better - and surgery can be effective.
Metastases to the heart
Management of intraatrial lung tumors
Cardiac metastases in soft tissue sarcomas
If you have a met to the heart, you want to have it surgically removed as soon as safely possible because it can become deadly whether your cancer responds well to treatment or not. If the tumor invades the heart, then it can cause the heart to stop pumping well; but other causes of mischief include obstructing blood flow into or out of the heart, or breaking off and forming metastases to other parts of the body like the brain.
We wanted to post about heart metastases because we found out about them only because our dd was on a Phase I / II trial that required an ECHO. The mass was seen on ECHO - and although it was about the size of a golf ball, it didn't block any of the valves - and there were no changes in EKG or abnormal sounds that the cardiologist could hear. The important point is your doctor should have a high index of suspicion to find these - and the screening study is likely to be an ECHO. We had been watching our dd's lung mets - and thought these were still fairly far (1-2 cm) from the main pulmonary vessels by chest CT - but when we didn't know is that they can sneak into small pulmonary veins that aren't well seen on chest CTs (the resolution is too small) and travel into the heart. On Chest CT the heart is bright white - so intracardiac tumors can't be seen.
Recently we heard that young woman with cardiac tumors seemed to be responding to a promising clinical trials medication, but she unexpectedly died. The problem with medical treatments and cardiac tumors is that even when a cancer responds to treatment, a tumor in the heart can be just as deadly.
Metastases to the heart
Management of intraatrial lung tumors
Cardiac metastases in soft tissue sarcomas
Tuesday, August 17, 2010
CureASPS.org - Resources and Discussion Forum for Alveolar Soft Part Sarcoma
Alveolar soft part sarcoma is an early metastasizing cancer that affects mostly children and young adults. No definite cure is known, but many promising therapies have been discovered and some 15+ year survivors are members of the CureASPS.org community.
Saturday, May 22, 2010
Additional Minimally-Invasive Options for Sarcoma - Cryoablation and RFA
Another quick update for those of you with metastatic sarcoma.
Our daughter is 2 years out from laser surgery on on the right, and 1 year out from laser surgery on the left. Some small nodules have appeared in the intervening times - this is a difficult aspect of determining the timing of metastasectomy and probably why so many people have to have repeated lung surgeries. Because metastasectomies seem to slow the progress of disease there is always a difficulty determining when to operate - you want to operate to slow the disease, but you don't want to operate too early because new mets appear and then you have to operate again. A second surgery is always more difficult than the first - because of scarring from the previous surgery that may make the procedure longer (need to release the adhesions) and also the greater difficulty feeling for the mets. Usually the mets will have to be larger for a second surgery, but if you wait too long, the mets may also become inoperable.
We are currently considering cryoablation at least on one side. There was a small nodule missed on our daughter's surgery on the left, and that nodule has been slowly increasing over the past year. The main danger of these tumors is if they press on a major airway. Also it adds to the overall tumor burden which may make it more difficult for patients to respond to medications. One of the world's experts is Dr. Peter Littrup: http://www.karmanos.org/app.asp?id=1117
The best candidates for cryoablation are those with fewer rather than many lung mets. It is best for the mets to be smaller than 3 cm for a complete ablation, although potentially if something regrows, it can be ablated again. We were told the reason multiple tumors aren't done is that when the lung recovers from the ablation, revascularization in the area could make the other tumors grow more quickly. It seems that it makes more sense that metastatsectomy comes first to reduce the numbers of multiple tumors, and then for additional tumors that either got missed or appear, they can be removed by cryoablation. At least one sarcoma doc told us that because lung blood vessels are terminal - they don't tend to form distal metastases...that means they are unlikely to 'break off' and go to other parts of the body.
Usually these procedures are covered by insurance, but they may require pre-authorization. Radiofrequency ablation or RFA can also be performed for lung, but from what I've read, it can be harder to perform because the burn zone can't be easily visualized by CT (by cryoablation you can see the 'ice ball') and the great vessels can pull away the heat. RFA is a great option for liver mets though (http://www.medicinenet.com/radiofrequency_ablation/article.htm).
Whether a met or group of mets can be treated by cryoablation completely depends upon the appearance of the scan (the doctor will look at size and location etc.), so scans need to be sent to the doctor who is considering ablation. Usually the procedure takes about an hour or less, no ICU time afterward, small incision, and home the next day. No flying for 1 week due to the risk of pneumothorax. The most common complication is a pneumothorax, especially if a patient hasn't had a prior surgery before.
Hope that helps!
Our daughter is 2 years out from laser surgery on on the right, and 1 year out from laser surgery on the left. Some small nodules have appeared in the intervening times - this is a difficult aspect of determining the timing of metastasectomy and probably why so many people have to have repeated lung surgeries. Because metastasectomies seem to slow the progress of disease there is always a difficulty determining when to operate - you want to operate to slow the disease, but you don't want to operate too early because new mets appear and then you have to operate again. A second surgery is always more difficult than the first - because of scarring from the previous surgery that may make the procedure longer (need to release the adhesions) and also the greater difficulty feeling for the mets. Usually the mets will have to be larger for a second surgery, but if you wait too long, the mets may also become inoperable.
We are currently considering cryoablation at least on one side. There was a small nodule missed on our daughter's surgery on the left, and that nodule has been slowly increasing over the past year. The main danger of these tumors is if they press on a major airway. Also it adds to the overall tumor burden which may make it more difficult for patients to respond to medications. One of the world's experts is Dr. Peter Littrup: http://www.karmanos.org/app.asp?id=1117
The best candidates for cryoablation are those with fewer rather than many lung mets. It is best for the mets to be smaller than 3 cm for a complete ablation, although potentially if something regrows, it can be ablated again. We were told the reason multiple tumors aren't done is that when the lung recovers from the ablation, revascularization in the area could make the other tumors grow more quickly. It seems that it makes more sense that metastatsectomy comes first to reduce the numbers of multiple tumors, and then for additional tumors that either got missed or appear, they can be removed by cryoablation. At least one sarcoma doc told us that because lung blood vessels are terminal - they don't tend to form distal metastases...that means they are unlikely to 'break off' and go to other parts of the body.
Usually these procedures are covered by insurance, but they may require pre-authorization. Radiofrequency ablation or RFA can also be performed for lung, but from what I've read, it can be harder to perform because the burn zone can't be easily visualized by CT (by cryoablation you can see the 'ice ball') and the great vessels can pull away the heat. RFA is a great option for liver mets though (http://www.medicinenet.com/radiofrequency_ablation/article.htm).
Whether a met or group of mets can be treated by cryoablation completely depends upon the appearance of the scan (the doctor will look at size and location etc.), so scans need to be sent to the doctor who is considering ablation. Usually the procedure takes about an hour or less, no ICU time afterward, small incision, and home the next day. No flying for 1 week due to the risk of pneumothorax. The most common complication is a pneumothorax, especially if a patient hasn't had a prior surgery before.
Hope that helps!
Tuesday, March 3, 2009
Surgery and Laser Resection for Sarcoma Lung Metastases
Because sarcoma preferentially spread to the lungs, surgical resection of lung metastases can be curative or significant extend life (years) for sarcoma patients. The most common options facing patients are VATS, open thoracotomy (surgical wedge resection), and radiofrequency ablation. The gold standard is open thoracotomy in terms of try to remove all gross disease. If resections are complete, there is the possibility of long term (decades) remission or "NED" (no evidence of disease). But there are significant risks and irreversible consequences of conventional thoracotomy, and in addition, many more patients will be told they are not operative candidates at all because there are too many lung nodules, there are central lung nodules (deep in the lung lobe) and / or they involve all lobes.We wanted to post about the option for laser resection of sarcoma lung metastases because this approach offers hope to patients who are thought to be unresectable by conventional surgery, and less disabling surgery for those who are contemplating conventional thoracotomy.
The lung metastases in sarcoma are a common cause of death. Death can be caused by a number of factors -but most often due to cumulative tumor burden on the lungs, or compression of main airways or bronchi, or less commonly invasion of the heart or great vessels. The clinical rationale for removing lung metastases is not only the removal of tumors that may invade critical structures, but also there seems to be a therapeutic effect of thoracotomy on sarcomas that might be an immune response to the actual surgery itself.
The survival statistics for redo thoracotomy are pretty impressive (see below), although a surgeon friend of our said to be wary of "sampling error" - the more healthy people may be candidates for redo thoracotomy.
See entire Powerpoint presentation here. There are many other supporting studies that support repeated resection or metastasectomy when the primary soft tissue sarcoma is removed and the lungs are the only known site of metastases, but for instance in our daughter's rare alveolar soft part sarcoma, Judson's group reported that of 9 patients who underwent metastectomy, 7 achieved complete clearance and 44% were disease-free at last following (followup ranging from 2-22 years).
The purpose of this blog is to share what information and experience we have gained in our daughter's battle with metastatic sarcoma. Patients and their families should research promising therapies and investigational drugs because great progress is being made into the biology of these rare cancers and no single doctor will be able to keep up with all the research advances.
Recently we have been contacted by numbers of patients seeking more information about our experiences with laser resection in Germany with Dr. Rolle. In order to make it easier for others to learn from our personal experiences and sharing of the literature, we decided to post the information to a blog. We realize this may be a big step for you to take, and if you have any questions, please feel and contact by email or through the comments on this blog.
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