Hello All! My husband has been battling Synovial sarcoma since Oct 2010. In 2007, they found a tumor on the right forearm and was removed, then only to return on the lungs in 2010. They are now considering removing the entire right lung in hopes that it will not spread to the left. Has anyone ever heard of a lung transplant? I was under the impression that it was not an option as the chances of it returning is too great. Has anyone had any encounters with this before? Any advice is welcomed. Thanks and God bless you all.
My name is Steve. SS tumor in right elbow Sept. 2011, Stage IIIB, 5.1 CM tumor. An answer to your query. I have heard of a lung transplant and I have heard Dr’s say no to transplant because of poor outcomes once it has gone to the lungs. Of all things, SS going to the lungs is what we all dread. I do know of a guy (I believe i met him on this site) that had a lung removed and lived for years and then the Dr’s thought it safe to do a lung transplant. I’m praying for you and your husband. I’m in the middle of my chemo, starting my 3rd round. I already had surgery and radiation treatments. I pray you find your answer(s) to your questions. What a terrible cancer to find ANY answers to our questions!
I have never heard of a lung transplant done on a cancer patient but I do know of one person with SS who had a whole lobe removed and was still without evidence of disease 5 years after the surgery. And he didn't seem to be bothered by the missing lobe...
We talked to My husbands doctor about this casually when we met with him this week. He said that he has not seen people get lung transplants with SS in the lung. In addition to the notion that the disease could reoccur in the transplanted lung, there is the preparation for the transplant which isn’t ideal for those waiting for the transplant. Something about taking meds which reduce your immune defenses.
That said, Dan has met a 10+ year survivor who had his entire left lung removed and is doing great. He plays basketball and is very active and notices very few issues.
He also has had nothing come up in his other lung.
Many positive thoughts to you as you weigh all of your options.
Elodie Espesset said:
I have never heard of a lung transplant done on a cancer patient but I do know of one person with SS who had a whole lobe removed and was still without evidence of disease 5 years after the surgery. And he didn’t seem to be bothered by the missing lobe…
Hey Carrie.. My daughter was dx with SS in her hip when she was 16, back in 2009.. Chemo, radiation and then surgery.. She spent most of 2010 learning how to walk with crutches and trying to get back to life.. At the end of 2010 we discovered she had Mets in her left lung, they monitered it by the time she was ready for Vats they discovered she had Mets in her right.. She had two surgeries one in Feb 2011 and one in March 2011.. When we went for her follow up scan, she had two huge ones right smack in the middle of her left lobe... We were told they would have to remove the whole side... WE paniced...... Charisse is a young woman who loves to sing, it is the only enjoyment she gets out of life, now her dancing days are over... It was a truely hard time for all of us while, we waited for the finally decsion to be made... Charisse felt her life was over, all the things she loved were slowly being taken away.. We were told about all the pros and cons, Lung transplant was never an option, basically now she had secondaries it was out of the question........ More scans more checks and the hospital decided they only had to remove the whole bottom lobe in May 2011......... I am truely amazed at how fast she recovered.. I took more time off work and was prepared for the struggle. but NO! within three weeks( I wont lie..it was a long three weeks) , charisse was singing again in her room, and could manage her crutches and walk the usual distances... It really made no difference to how she functioned.. ..
In hindsight I wondered if the decsion to only remove the bootom lobe was the right one.. In Nov 2011 we discovered she now had multitudes throughout her lungs, too many to operate on, so in Jan this year she started cycles again.. She has had 4 so far, but the toxcidity is getting too much for her body, she once again weighs in at 40kg, So they are giving her a 6 six break... Sadly they are not looking for a cure now, but just to slow down the progression... But in all honesty when I look at my girl, it very hard to see except for the slim build and no hair that she has cancer, she is getting over the cyles already and will soon be strong enough to fight again..
Wishing your family all the best, find out as much information as possible... It was easier for charisse at first to sleep in a reclining chair than bed, the drains didnt stay to long , pain killers were a blessing.. Nel <3
Well, they have now told us that surgery is not an option since he has previously had spots on the left side. They say the only option is an oral maintenance medication. I have called several other hospitals to reach out for a second option.
Carrie, how big are the tumors in the lungs? Sometimes when conventional lung surgery is not possible, laser surgery may be an option. It has the advantage to sometimes be able to save more lung tissue. There is only one surgeon that does it though and he is located in Germany (Dr Rolle). If you want more information about him, you may want to contact our member twinmom:
http://forum.synovialsarcomasurvivors.org/profile/twinmom
Her son used laser surgery for his multiple lung metastases.
Also you may want to look into cryosurgery. Dr Littrup in Detroit is supposed to be the most experienced for this technique:
There’s only one in the right lung and she compared it to the size of an egg now that it has been shrunk with chemo. He has already had half of this lung removed and are certain it’s recurring due to the pleural space being infected. His doctor believes that the only way to keep it from reoccurring is to remove the entire lung along with the pleural space. However, after she discussed it with the surgeon, they believe it is not an option because he has had two previous lung wedge resections on the left. We didn’t get much detail as it was only relayed through the oncologist so we meet next Wednesday with the surgeon ourselves. My concern is that they are not going to continue with aggressive treatment. I have spoken with both MD Anderson center and Slogan-Kettering in New York about a possible second opinion (well actually it will be our third). Hopefully they have a better understanding of the disease and more aggressive options.
Elodie Espesset said:
Carrie, how big are the tumors in the lungs? Sometimes when conventional lung surgery is not possible, laser surgery may be an option. It has the advantage to sometimes be able to save more lung tissue. There is only one surgeon that does it though and he is located in Germany (Dr Rolle). If you want more information about him, you may want to contact our member twinmom:
http://forum.synovialsarcomasurvivors.org/profile/twinmom
Her son used laser surgery for his multiple lung metastases.
Also you may want to look into cryosurgery. Dr Littrup in Detroit is supposed to be the most experienced for this technique:
Why do they feel the pleural space is involved? Is there fluid collecting in the pleural space? Is the tumor attached to the pleura? I am wondering if this would be an option in this case:
http://www.upmc.com/Services/Koch/Conditions/Pages/PleuralCavityTumors.aspx
Let us know what the second opinions are advising...
Hello, I want to give you an update on my son. He was diagnosed with a synovial sarcoma in his hip in Jan, 2011. At the time of his diagnosis the cancer had already spread to his lungs - 40 small tumors. He went through the same routine many of you have experience and enjoyed 3 months of remission. In November the tumors in his lungs started growing. The doctors could give him some time but he would have to spend it on chemo and that was just not an option for him. We have been to Germany for surgery with Dr. Rolle twice. My son has had a total of 69 tumors removed from his lungs. He is doing great and he technically has no evidence of disease - but I believe he has some cancer cells lurking somewhere in his lungs. We are considering Site Specific Immunotherapy which is a vaccine that is self administered every 2nd day that stimulate the immune system. Unfortunately, it is not avaialbe in this country.
I encourage anyone with lung mets to investigate Dr. Rolle surgery. 10 hours of surgery and the tumors are gone!
Twinmom