Retroperitoneal Sarcoma

4 Posts | Page(s): 1 

Retroperitoneal Sarcoma

by bradreddan on Sun Aug 26, 2018 12:52 AM

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Hello Everyone.

4 years ago my beautiful wife had a 2.5kg tumour removal along with her left kidney. 3 years later, her spleen and an amount of her pancreas was also removed from a reoccurance.

She now finds with additional scans, there is hardening around her pancreas and concerns us greatly. Basically, the experts are saying to us its a waiting game and that we will monitor it with more scans in 3 months. Whilst we have faith in our existing medical assistance, we feel it neccessary to look at all alternatives. I have read some articals within this forum of alternative medicines and would greatly appreciate any further advice out there. Wondering if this new cannibas oil has provided any positive outcomes.

RE: Retroperitoneal Sarcoma

by Shawhill2 on Mon Sep 03, 2018 03:02 PM

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On Aug 26, 2018 12:52 AM bradreddan wrote:

Hello Everyone.

4 years ago my beautiful wife had a 2.5kg tumour removal along with her left kidney. 3 years later, her spleen and an amount of her pancreas was also removed from a reoccurance.

She now finds with additional scans, there is hardening around her pancreas and concerns us greatly. Basically, the experts are saying to us its a waiting game and that we will monitor it with more scans in 3 months. Whilst we have faith in our existing medical assistance, we feel it neccessary to look at all alternatives. I have read some articals within this forum of alternative medicines and would greatly appreciate any further advice out there. Wondering if this new cannibas oil has provided any positive outcomes.

bradreddan,

It looks like I am in the same boat as you, my wife had been cancer free for 7 years and a new tumor has shown itself during a scan on the 22nd of August.

Our doctor has said science has made advances during the last 8 years since it was first discovered, but we are in a waiting mode also. They want to wait 3 months to do another scan to see how fast it is growing before discussing options. I also am wondering about alternative medicines and cannibas oil.

RE: Retroperitoneal Sarcoma

by chsim on Fri Sep 14, 2018 07:55 AM

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Hello,

My mother at age of 58 now was diagnosed with 3.5 cm sized-retroperitoneal leiomyosarcoma on Jan 2013. She had surgery after CT scans. Doctors couldn't get it removed by surgery because of vascular entanglement at that time. Then, she had IMRT treatment with Rapid Arc at 30 Gy over 15 fractions and SBRT treatment with Cyberknife as a boost at 25 Gy over 5 fractions. One year after the radiothery treatment was completed, CT scans showed the tumor was gone, meaning a complete response. We were so happy for her.

She has been going through chest and abdominal CT scans every three months for the first two years, then every six months after. We had recently discovered that we had distant tumor recurrence at two sites. One on the tail area of pancreas, sized 2.2cm, and the other, sized 3.6cm near L5 vertebra. Those areas I figured are very rare metastasis sites for leiomyosarcoma and only few reports regarding it are published to date. Nonetheless, it was good that it had been growing very slowly (both at Ki-67 4-5%). But, in hindsight, it could have been detected at least three years earlier on the images of CT scans she took. It was just the radiologists of the hospital we went didn't find it out and reported nothing abnormal were found on the results of the several CT scans.

It was unfortunate that the doctors missed those lesions, but we had to look forward. My mother in May 2018 had SBRT therapy on both sites. A total of 36 GY over 4 fractions on the area near L5 vertebra, and a total of 40 GY over 4 fractions on the tail of pancreas. After two months, she had the mass on L5 vertebra removed by surgery. And we are currently monitoring the pancreas leison every three months. It's shown that there is no change in size after the treatment. We recall that the retroperitoneal mass responded and started to shrink around six to nine months after the SBRT treatment. So we hope it would go away just like the primary site, or we can consider surgery in the end.

Our thought is that having two surgeries in a short period of time would be very hard on my mother, even though she had no symptoms before or after the treatment and is living just a normal life as if she does not have this awful disease at all. So we are on a wait and see approach. As for alternative treatments, she had oncothermia treatment on her abdomen and mistletoe extracts injections in the hope of potentiation of conventional treatments, despite lack of peer-reviewed scientific research. We go to the hospital in Seoul, South Korea. I am more than happy to tell you more of my mother's treatment process, and share information on the latest leading technology in treating sarcomas. I read a variety of research reports about it and hospitals in Seoul are one of best hospitals in the world with many advanced treatment methods, on a par with the ones in the States, probably. I sincerely pray people here go through the treatment well without any worse side-effects and finally beat the disease. Anyone interested in sharing information can contact me at chsim@indiana.edu

Many thanks,

Chang

 

RE: Retroperitoneal Sarcoma

by bradreddan on Mon Sep 17, 2018 06:03 AM

Quote | Reply

On Sep 14, 2018 7:55 AM chsim wrote:

Hello,

My mother at age of 58 now was diagnosed with 3.5 cm sized-retroperitoneal leiomyosarcoma on Jan 2013. She had surgery after CT scans. Doctors couldn't get it removed by surgery because of vascular entanglement at that time. Then, she had IMRT treatment with Rapid Arc at 30 Gy over 15 fractions and SBRT treatment with Cyberknife as a boost at 25 Gy over 5 fractions. One year after the radiothery treatment was completed, CT scans showed the tumor was gone, meaning a complete response. We were so happy for her.

She has been going through chest and abdominal CT scans every three months for the first two years, then every six months after. We had recently discovered that we had distant tumor recurrence at two sites. One on the tail area of pancreas, sized 2.2cm, and the other, sized 3.6cm near L5 vertebra. Those areas I figured are very rare metastasis sites for leiomyosarcoma and only few reports regarding it are published to date. Nonetheless, it was good that it had been growing very slowly (both at Ki-67 4-5%). But, in hindsight, it could have been detected at least three years earlier on the images of CT scans she took. It was just the radiologists of the hospital we went didn't find it out and reported nothing abnormal were found on the results of the several CT scans.

It was unfortunate that the doctors missed those lesions, but we had to look forward. My mother in May 2018 had SBRT therapy on both sites. A total of 36 GY over 4 fractions on the area near L5 vertebra, and a total of 40 GY over 4 fractions on the tail of pancreas. After two months, she had the mass on L5 vertebra removed by surgery. And we are currently monitoring the pancreas leison every three months. It's shown that there is no change in size after the treatment. We recall that the retroperitoneal mass responded and started to shrink around six to nine months after the SBRT treatment. So we hope it would go away just like the primary site, or we can consider surgery in the end.

Our thought is that having two surgeries in a short period of time would be very hard on my mother, even though she had no symptoms before or after the treatment and is living just a normal life as if she does not have this awful disease at all. So we are on a wait and see approach. As for alternative treatments, she had oncothermia treatment on her abdomen and mistletoe extracts injections in the hope of potentiation of conventional treatments, despite lack of peer-reviewed scientific research. We go to the hospital in Seoul, South Korea. I am more than happy to tell you more of my mother's treatment process, and share information on the latest leading technology in treating sarcomas. I read a variety of research reports about it and hospitals in Seoul are one of best hospitals in the world with many advanced treatment methods, on a par with the ones in the States, probably. I sincerely pray people here go through the treatment well without any worse side-effects and finally beat the disease. Anyone interested in sharing information can contact me at chsim@indiana.edu

Many thanks,

Chang

 

Thanks Chang for your info

Will keep you posted

Many thanks

Brad

Australia

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