I was originally diagnosed with SS in Dec. 2011. I had a large tumor behing my rt knee. I had my leg amputated in Jan 2012.. At the time of initial diagnosis, I had 4 very small nodules on my lungs.The doctors just watched them at first via ct scans and then they began to grow a bit. In Oct 2012 I had one of the mets removed surgically. I wanted to have the other three removed by cyberknife. I was told by the radiation oncologist that cyberknife would eliminate the nodules. I had 2 nodules on my left lung one on the upper lung and one on the lower lung and one nodule on the rt lower lung. When they were about to perform the cyberknife treatment the dr told me that the nodule on the rt lung was too small to risk having the cyberknife miss hitting it during the procedure and damaging tissue in the process. So they just did the cyberknife on my left lung on the two nodules that were remaining. They didnt know right away if the cyberknife worked. So in March 2 months later, I had a ct scan which revealed that the two nodules had shrunk but were still there.My oncologist said I was in partial remission. I just had another ct scan on June 10 one of the nodules that was cyberknifed grew from 6mm to 2.5 cm and the nodule on the rt lung that they said was too small to cyberknife grew from 5mm to 6mm.
I said to my oncologist I should have had the nodules removed surgically instead of by cyberknife he said dont say that, surgery has its complications and cyberknife does work sometimes. He said this type of cancer unfortunately comes back.
My questions are for those of you that have had mets removed surgically, At what point did you have the mets removed? Were they a certain size? Have you had mets removed from the rt and left lung at the same time or did you have to have 2 surgeries because they were on two different sides of the lung?
Would appreciate any feedback... when do we ever have peace of mind with this disease?
My mets were always removed after a period of watching. A times, the watching period was a year long. My understanding is that if the met is too small (less than 1cm) and not dense enough, it might be difficult for the surgeon to find it.
They never removed mets from both side at the same time. You breathe from your healthy lung while the other is recovering... Most of the times, I had mets on both lungs and they did surgery one lung at a time. One time I had one surgery in March and the following in July.
My husband had surgery 2 remove one of 2 lesions on his lungs in February 2013. Unfortunately, the surgery was unsuccessful due to excessive scar tissue (from prior surgery and radiation treatments). So the tumor in the left lung remains, as well as a smaller lesion in his right lung. The tumor that remains in his left lung has grown from 8 mm to 12 mm (in a short time). The tumor in the right lung is smaller. He will undergo "thermal ablation" procedures in the upcoming weeks to try to disintegrate them with either heat or cold. It is my understanding that because these procedures come with risk of lung collapse, they try to avoid doing both lungs at the same time. Therefore, Dan will have 2 separate procedures. Don't hesitate if you have any further questions...Be well...Jeanne
I have had 2 bi-lateral surgeries. The first time they went through my chest wall and the 2nd, they entered underneath my breast. I have had a total of 7 lung surgeries, one which resulted in a partial lobectomy of the left lung. I have always done well with those surgeries. I didn't start having real issues with lungs until I developed radiation pneumenitis from having radiation administered to the right lung...they should have never done that....the tumor was only 2 cm and I currently have a tumor in the same lung that is stable as a results of chemo! I'm not a big fan of lung radiation as a result. I have serious breathing issues as a results of that diagnosis. I believe the best course of action is surgery...but that's just my opinion bc it has always worked for me. And, your Dr. is right. It always returns...I've been doing this since 1991, so I'm living proof that you can live with the cancer. I would suggest you get more opinions from other sarcoma specialists. During that period since my diagnosis I have only been technically cancer free twice. What's more important is finding a chemo regimen to stop the growth and spreading bc it happens very fast. I'll be happy to answer any questions you have.. I have been thru a lot and have learned valuable lessons along the way.
Thanks for responding. So you did have surgeries to both lungs at the same time? Wondering why you are on chemo.Is surgery no longer an option? What type of chemo are you taking?
imaFighter91 said:
I have had 2 bi-lateral surgeries. The first time they went through my chest wall and the 2nd, they entered underneath my breast. I have had a total of 7 lung surgeries, one which resulted in a partial lobectomy of the left lung. I have always done well with those surgeries. I didn't start having real issues with lungs until I developed radiation pneumenitis from having radiation administered to the right lung...they should have never done that....the tumor was only 2 cm and I currently have a tumor in the same lung that is stable as a results of chemo! I'm not a big fan of lung radiation as a result. I have serious breathing issues as a results of that diagnosis. I believe the best course of action is surgery...but that's just my opinion bc it has always worked for me. And, your Dr. is right. It always returns...I've been doing this since 1991, so I'm living proof that you can live with the cancer. I would suggest you get more opinions from other sarcoma specialists. During that period since my diagnosis I have only been technically cancer free twice. What's more important is finding a chemo regimen to stop the growth and spreading bc it happens very fast. I'll be happy to answer any questions you have.. I have been thru a lot and have learned valuable lessons along the way.
Hi Jeanne thanks for responding.I'm not familiar with thermal ablation has this been a sucessful procedure for disintegrating the tumors? Hope it works for your husband. Does insurance cover it?
jkopetic said:
HI Mary,
My husband had surgery 2 remove one of 2 lesions on his lungs in February 2013. Unfortunately, the surgery was unsuccessful due to excessive scar tissue (from prior surgery and radiation treatments). So the tumor in the left lung remains, as well as a smaller lesion in his right lung. The tumor that remains in his left lung has grown from 8 mm to 12 mm (in a short time). The tumor in the right lung is smaller. He will undergo "thermal ablation" procedures in the upcoming weeks to try to disintegrate them with either heat or cold. It is my understanding that because these procedures come with risk of lung collapse, they try to avoid doing both lungs at the same time. Therefore, Dan will have 2 separate procedures. Don't hesitate if you have any further questions...Be well...Jeanne
I had surgery on both lungs twice. And you're correct that surgery is no longer an option. I'm currently on Votrient which is working to keep me stable. If it stops working, I'm sure my Drs. will come up with something else. But, I'm being hopeful about the Votrient. All I can do is be prepared for the next step if it stops working.
You certainly are a fighter. Votrient does seem to be the chemo drug that most people are on after the first go rounds of chemo.You have survived all these years and you are an inspiration. Stay Well.
imaFighter91 said:
Mary,
I had surgery on both lungs twice. And you're correct that surgery is no longer an option. I'm currently on Votrient which is working to keep me stable. If it stops working, I'm sure my Drs. will come up with something else. But, I'm being hopeful about the Votrient. All I can do is be prepared for the next step if it stops working.
My son just had double lung surgery at the end of May. They did his left lung first & were able to remove the tumor using the VATS procedure, then they did the right one, which had to be removed by full thoracotomy. They did not have to break any ribs, so we were thankful for that. As I stated they did the left one first & they placed something in his airway to isolate the lungs from each other. They deflated his left lung, performed the surgery, re-inflated that lung, sewed him up & then turned him over & did the same to the other side. He did very well - he had one nodule in each lung & both were successfully removed. The one on the left was not very deep, but the one on the right was very deep.
Thanks for the info regarding lung surgery to both lungs at the same time.I'm not familiar with VATS surgery but I will look into it. I'm glad to hear that they were able to remove the nodule that was very deep in your son's lung. Hope he continues good health.
Mary
mylhunt said:
Hi Mary,
My son just had double lung surgery at the end of May. They did his left lung first & were able to remove the tumor using the VATS procedure, then they did the right one, which had to be removed by full thoracotomy. They did not have to break any ribs, so we were thankful for that. As I stated they did the left one first & they placed something in his airway to isolate the lungs from each other. They deflated his left lung, performed the surgery, re-inflated that lung, sewed him up & then turned him over & did the same to the other side. He did very well - he had one nodule in each lung & both were successfully removed. The one on the left was not very deep, but the one on the right was very deep.
I am going to get surgery with Dr Rolle in Germany in the near future. Please check out my blog if you are interested in my treatment thus far and how the surgery goes. I have to be chemo-free for 4 weeks so I may not go right away. I currently have 10+ mets on each lung all less that 0.8 cm in size