Have most of ya’ll had pet scans for your follow up after diagnosis? Also did ya’ll have chemotherapy? My tumor was 4 centimeters on my foot. I worry that maybe the Dr.'s are not checking me thoroughly for mets. For my follow up every 3 months I always get a cat scan of my chest and that is it. My foot hasn’t been scanned since before the surgery in August, but the tumor was removed with clear margins.
You probably didn’t get chemotherapy because your tumor was small. If you read articles about prognosis, usually patients with tumor less than 5cm have a good prognosis. Also, since the margins were cleans there is no reason to think the beast will come back. As for PET scan, in my own situation, they only did PET scans when nodules showed up in my lungs. Although they did turn out to be metastases after removal , the PET scan did not show activity probably because the nodules were slow growing. I think the PET scan is useful to understand how aggressive the tumor is but not so much to detect a tumor early. CT scan of the chest every 3 months for the first 2 years, every 6 months up to year 5, then every one year up to year 10, is conventional. Although, it might be wise to continue follow up after 10 years, because some recent study showed that the disease can take more than 10 years to come back. Mary, I think you should just relax and enjoy life. Your situation is among the best cases possible. Just try to forget that you had a cancer (but do not forget the follow-up appointments)…
Thanks for the reply very informative and does help relieve my fears.
Elodie Espesset said:
You probably didn't get chemotherapy because your tumor was small. If you read articles about prognosis, usually patients with tumor less than 5cm have a good prognosis. Also, since the margins were cleans there is no reason to think the beast will come back. As for PET scan, in my own situation, they only did PET scans when nodules showed up in my lungs. Although they did turn out to be metastases after removal , the PET scan did not show activity probably because the nodules were slow growing. I think the PET scan is useful to understand how aggressive the tumor is but not so much to detect a tumor early. CT scan of the chest every 3 months for the first 2 years, every 6 months up to year 5, then every one year up to year 10, is conventional. Although, it might be wise to continue follow up after 10 years, because some recent study showed that the disease can take more than 10 years to come back. Mary, I think you should just relax and enjoy life. Your situation is among the best cases possible. Just try to forget that you had a cancer (but do not forget the follow-up appointments)...
Mary,
My tumor was 5 cm when diagnosed (located behind my right knee), and I did receive both chemo and radiation before my surgery. My tumor completely surrounded my vein and artery, and invaded the artery. My knee surgery was one year ago yesterday, and since then in December 2010 2 mets showed up in my lungs, and like Elodie, then I did get a PET scan. My oncologist said it is not a definitive scan for sarcoma, but he has been studying the use of PET scans for sarcomas. I had a sucessfull wedge resection surgery to remove the mets with negative margins. Hopefully I don't have to go through that again.
I also get routine MRI scans for the tumor resection from my knee.
It sounds like you are in great shape! Here's to no more cancer.
-Dan
My doctor has not recomended a PET scan, just CT scans every four months and a MRI of my leg at 1.5 years after my chemo ended. You are fortunate that the tumor was removed and you kept your foot. My foot would not have worked after the removal of the tumor from just below my ankle. Now 22 months after chemo I am doing well on my prosthetic. Keep moving forward and surviving.
Thanks for the reply. My tumor was located on the top of my right foot. It had invaded an artery and 2 ligaments. I lost the artery and both ligaments. I had a tissue/skin graph done from arm to my foot. So in addition to the foot I am also missing a decent sized chunk out of my left arm. They also were able to remove an artery from arm and move to my foot therefore saving my foot. Still not sure as to why my arm was picked but oh well. My foot does work ok. Both hurt especially if I do alot of activity and I still have a decent amount of swelling. My last surgery was Dec. 2. though. But overall I am good. I am very grateful to be here and know things could have been alot worse but had wondered why the Oncologist recommended no chemo. He doesn’t seem to want to answer that question.
Daniel J. Thibault said:
Mary,
My tumor was 5 cm when diagnosed (located behind my right knee), and I did receive both chemo and radiation before my surgery. My tumor completely surrounded my vein and artery, and invaded the artery. My knee surgery was one year ago yesterday, and since then in December 2010 2 mets showed up in my lungs, and like Elodie, then I did get a PET scan. My oncologist said it is not a definitive scan for sarcoma, but he has been studying the use of PET scans for sarcomas. I had a sucessfull wedge resection surgery to remove the mets with negative margins. Hopefully I don't have to go through that again.
I also get routine MRI scans for the tumor resection from my knee.
It sounds like you are in great shape! Here's to no more cancer.
-Dan
The use of chemo for sarcoma is actually very controversial. Some statistical studies showed chemotherapy had no benefits on overall survival while others have shown an increase in the time between recurrences. I would advise you to watch the videos about chemotherapy from the 2010 ESMO conference which are posted here:
http://esmo.onsite.tv/gist2010/
It will give you a sense of the extend of the controversy...
Mary,
I think that you need to take control of your followups and make sure that you are comfortable with what they are doing. If you want to have your foot scanned (along with your lungs) to ensure there is no local recurrence, I think that you should absolutely have that done. If your doctor doesn't want to do that then tell him you will find someone who will. I bet he'll give in. The bottom line is that you need to look out for your own well being, because obviously you care more about your life than anyone else does!
As to your questions about using chemo to treat sarcoma... I can only share my experience, but hopefully it can help!
My doctor has specialized in sarcomas for over 30 years and is actually the one who started the practice of using chemotherapy to treat sarcoma. He also began the practice of limb salvage surgery. Apparently they used to treat every sarcoma that was located in an extremity with amputation, but obviously that is no longer the case.
Over the course of my treatment we have asked him a lot of questions and have gotten a great education on this topic of using chemo vs not using chemo to treat sarcoma, and specifically synovial sarcoma.
It was traditionally believed that the use of chemo to treat sarcomas was pointless. My doctor challenged that belief and his results in successfully curing his patients are significantly higher than most. However, we have a rare form of cancer. It is difficult to get large control groups with the exact same type of sarcoma and have some treated with chemo and some treated without. Without these large group tests, conventional thinking of how to treat these sarcomas will not change.
Add to that the fact that my doctor will not conduct these tests on his own patients because he fully believes that chemo maximizes survival, so he will not put someone's life at risk just to run tests.
We treated my high grade, monophasic synovial sarcoma with 4 rounds of chemo prior to surgery. The first 2 rounds were ifosfamide and the third and fourth rounds were a combination of adriamycin and cisplatin. My tumor was quite large and had actually wrapped around the nerve bundle and arteries in my right calf. Our hope was that the chemo would shrink the tumor away from the arteries and nerves to make limb salvage a safe option. Unfortunately the tumor did not shrink away from those structures, so we amputated to ensure that we didn't leave any cells behind and give the tumor a chance to recur locally.
The pathology report after the surgery showed that even though the tumor didn't shrink, the chemo had actually been very successful... 80% of the tumor was necrotic (dead).
We are going to do 2 more round of chemo after my leg heals from the amputation to make sure that my body is completely clear of cancer cells. Even though we amputated and have minimized my chances of a local recurrence, we want to make sure that the odds of it metastasizing are as low as possible as well. Knowing that the cancer cells in my body have responded to treatment with the chemo I listed above, we will use one more round of each to hopefully ensure that any potential metastasis are killed off.
Obviously there is never a guarantee that I will be completely cured by taking these measures, but I will do anything and everything I can to try to maximize my life!
I don't know if this clears anything up, but to sum up, my sarcoma clearly responded to chemo treatment. However, without large group tests some doctors will continue to say that it is not proven that sarcoma's respond to chemo and will continue to only treat them with radiation and surgery. That being said, my doctor has said several times that he has never seen a synovial sarcoma not respond to Ifosfamide, just for a final plug in favor of chemo! Haha.
Take control of your followups and here is hoping you have a cancer free future!!!
Thanks Rob for your reply. This does help clear up alot. I go back to the Oncologist on the 25th and maybe I can get some answers to my questions.
Rob Gregory said:
Mary,
I think that you need to take control of your followups and make sure that you are comfortable with what they are doing. If you want to have your foot scanned (along with your lungs) to ensure there is no local recurrence, I think that you should absolutely have that done. If your doctor doesn't want to do that then tell him you will find someone who will. I bet he'll give in. The bottom line is that you need to look out for your own well being, because obviously you care more about your life than anyone else does!
As to your questions about using chemo to treat sarcoma... I can only share my experience, but hopefully it can help!
My doctor has specialized in sarcomas for over 30 years and is actually the one who started the practice of using chemotherapy to treat sarcoma. He also began the practice of limb salvage surgery. Apparently they used to treat every sarcoma that was located in an extremity with amputation, but obviously that is no longer the case.
Over the course of my treatment we have asked him a lot of questions and have gotten a great education on this topic of using chemo vs not using chemo to treat sarcoma, and specifically synovial sarcoma.
It was traditionally believed that the use of chemo to treat sarcomas was pointless. My doctor challenged that belief and his results in successfully curing his patients are significantly higher than most. However, we have a rare form of cancer. It is difficult to get large control groups with the exact same type of sarcoma and have some treated with chemo and some treated without. Without these large group tests, conventional thinking of how to treat these sarcomas will not change.
Add to that the fact that my doctor will not conduct these tests on his own patients because he fully believes that chemo maximizes survival, so he will not put someone's life at risk just to run tests.
We treated my high grade, monophasic synovial sarcoma with 4 rounds of chemo prior to surgery. The first 2 rounds were ifosfamide and the third and fourth rounds were a combination of adriamycin and cisplatin. My tumor was quite large and had actually wrapped around the nerve bundle and arteries in my right calf. Our hope was that the chemo would shrink the tumor away from the arteries and nerves to make limb salvage a safe option. Unfortunately the tumor did not shrink away from those structures, so we amputated to ensure that we didn't leave any cells behind and give the tumor a chance to recur locally.
The pathology report after the surgery showed that even though the tumor didn't shrink, the chemo had actually been very successful... 80% of the tumor was necrotic (dead).
We are going to do 2 more round of chemo after my leg heals from the amputation to make sure that my body is completely clear of cancer cells. Even though we amputated and have minimized my chances of a local recurrence, we want to make sure that the odds of it metastasizing are as low as possible as well. Knowing that the cancer cells in my body have responded to treatment with the chemo I listed above, we will use one more round of each to hopefully ensure that any potential metastasis are killed off.
Obviously there is never a guarantee that I will be completely cured by taking these measures, but I will do anything and everything I can to try to maximize my life!
I don't know if this clears anything up, but to sum up, my sarcoma clearly responded to chemo treatment. However, without large group tests some doctors will continue to say that it is not proven that sarcoma's respond to chemo and will continue to only treat them with radiation and surgery. That being said, my doctor has said several times that he has never seen a synovial sarcoma not respond to Ifosfamide, just for a final plug in favor of chemo! Haha.
Take control of your followups and here is hoping you have a cancer free future!!!
Mary Baker said:
Thanks Rob for your reply. This does help clear up alot. I go back to the Oncologist on the 25th and maybe I can get some answers to my questions.
Rob Gregory said:Mary,
I think that you need to take control of your followups and make sure that you are comfortable with what they are doing. If you want to have your foot scanned (along with your lungs) to ensure there is no local recurrence, I think that you should absolutely have that done. If your doctor doesn't want to do that then tell him you will find someone who will. I bet he'll give in. The bottom line is that you need to look out for your own well being, because obviously you care more about your life than anyone else does!
As to your questions about using chemo to treat sarcoma... I can only share my experience, but hopefully it can help!
My doctor has specialized in sarcomas for over 30 years and is actually the one who started the practice of using chemotherapy to treat sarcoma. He also began the practice of limb salvage surgery. Apparently they used to treat every sarcoma that was located in an extremity with amputation, but obviously that is no longer the case.
Over the course of my treatment we have asked him a lot of questions and have gotten a great education on this topic of using chemo vs not using chemo to treat sarcoma, and specifically synovial sarcoma.
It was traditionally believed that the use of chemo to treat sarcomas was pointless. My doctor challenged that belief and his results in successfully curing his patients are significantly higher than most. However, we have a rare form of cancer. It is difficult to get large control groups with the exact same type of sarcoma and have some treated with chemo and some treated without. Without these large group tests, conventional thinking of how to treat these sarcomas will not change.
Add to that the fact that my doctor will not conduct these tests on his own patients because he fully believes that chemo maximizes survival, so he will not put someone's life at risk just to run tests.
We treated my high grade, monophasic synovial sarcoma with 4 rounds of chemo prior to surgery. The first 2 rounds were ifosfamide and the third and fourth rounds were a combination of adriamycin and cisplatin. My tumor was quite large and had actually wrapped around the nerve bundle and arteries in my right calf. Our hope was that the chemo would shrink the tumor away from the arteries and nerves to make limb salvage a safe option. Unfortunately the tumor did not shrink away from those structures, so we amputated to ensure that we didn't leave any cells behind and give the tumor a chance to recur locally.
The pathology report after the surgery showed that even though the tumor didn't shrink, the chemo had actually been very successful... 80% of the tumor was necrotic (dead).
We are going to do 2 more round of chemo after my leg heals from the amputation to make sure that my body is completely clear of cancer cells. Even though we amputated and have minimized my chances of a local recurrence, we want to make sure that the odds of it metastasizing are as low as possible as well. Knowing that the cancer cells in my body have responded to treatment with the chemo I listed above, we will use one more round of each to hopefully ensure that any potential metastasis are killed off.
Obviously there is never a guarantee that I will be completely cured by taking these measures, but I will do anything and everything I can to try to maximize my life!
I don't know if this clears anything up, but to sum up, my sarcoma clearly responded to chemo treatment. However, without large group tests some doctors will continue to say that it is not proven that sarcoma's respond to chemo and will continue to only treat them with radiation and surgery. That being said, my doctor has said several times that he has never seen a synovial sarcoma not respond to Ifosfamide, just for a final plug in favor of chemo! Haha.
Take control of your followups and here is hoping you have a cancer free future!!!