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Take Control of Your Treatment! General Info and advice for those starting out


#1

I wanted to start this discussion as a general information source for people who are just facing the start of their journey dealing with Synovial Sarcoma. Due to the fact that this is a rare form of cancer, there is not a ton of information available on it, but given the fact that we have all faced this already, there is no doubt that we can provide some answers to questions that people might not even know they need to ask! So please join me in sharing your advice for those just getting started down this path. Let's make a resource of information so people can make informed decisions and not be left at the mercy of whatever their local oncologist tells them to do regarding their sarcoma!

First and foremost I would like to say that I think a lot of the information being used to decide treatment is out of date and out of touch. It is up to you to take control of your treatment and find the best care possible! Don't necessarily trust your life to the first oncologist recommended to you. They may be just fine, but you might benefit from finding someone who is a true specialist.

My oncologist is in New York City, currently at NYU Cancer Center, and has specialized in sarcomas for over 30 years now. His name is Gerald Rosen and he is one of the premier experts in the field of sarcomas today. According to him there is one other doctor that shares his same knowledge of sarcomas and that is Bob Benjamin who works at MD Anderson in Houston, TX. From a lot of extensive research and asking around in the sarcoma world, I firmly believe that these are the two top experts in the field, and would have a tough time trusting my life to anyone else. They have pioneered many of the treatments used today and even some treatments that others still do not use because they challenge conventional thinking.

One thing that I see a lot and have discussed with many other sarcoma patients during my treatments here at NYU Cancer Center... Despite what some doctors may tell you, chemotherapy does work in fighting sarcoma, as does radiation, and limb salvage is not always the best option. Dr. Rosen actually invented the concept of limb salvage. That being said, we amputated my right leg above the knee in February of 2011. This was the safest course for me because the option of limb salvage surgery could only be done with margins under one cm, and that is no margin at all. Doctor Rosen likes to see margins of at least 2 cm to make limb salvage a viable option.

Just because a surgeon tells you that a limb salvage is possible, does not always make it the best choice! They will say that if the limb salvage does not work then you can always go back and amputate later and that just because the tumor comes back locally does not mean it will metastasize. I think you can just logically work through this concept. If you do not have a successful limb salvage then you are leaving active tumor cells in your body for another 3-5 years. This gives them much more time to metastasize, and despite what your surgeon might say, it does increase your odds of the cancer spreading. Surgeons will sometimes offer advice saying that limb salvage is the correct first course simply because they are running a business and they know that is what you want to hear. Get several opinions and listen to your oncologist as well. They are the one's who deal with the mess after the cancer comes back because of poor advice at the start. Well, if they are a good oncologist anyway!

Talk to other people who have been down this path already. Everyone I talk to who has gone through this process of dealing with their sarcoma is able to speak in a different language, and has a wealth of knowledge regarding the path that they have taken. Just talking to someone who has gone down this road before can help so much because questions you would never think to ask can be answered and help point you in the right direction.

Good luck to everyone who is just starting out and I hope that others will contribute their thoughts and experiences to this thread to help make it a great resource!


#2

Great advice Alicia! You have to be your own best advocate! If a doctor will not do what you feel is right, then go find someone who will! This is a great example of being proactive in your care, and it is crucial. Thank you so much for sharing!


#3

The Liddy Shriver Sarcoma Initiative has many good informative articles about sarcoma. Bruce Shriver who lost his daughter to Ewing's sarcoma has spent a lot of energy pushing sarcoma specialists from all around the world to write articles for his website and I strongly advise newbies to look through them as a starting point:

http://sarcomahelp.org/index.html

I would recommend in particular the article about second opinions:

http://sarcomahelp.org/sarcoma_second_opinions.html

In a perfect world, a patient should actually see a specialist before the biopsy. Unfortunately a lot of patients end up having "oops" surgery because the radiologist didn't think about sarcoma when he/she interpreted the images.

Of course, it is never too late to get a second opinion and for Americans who need financial help in doing so, the Sarcoma Alliance can help:

http://www.sarcomaalliance.org/assistance.shtml

To be noted, not all specialists agree on the appropriate treatment depending on the situation. So when you don't like the treatment offered, it makes perfect sense to get several additional opinions (you don't have to stop at 2) . Some types of treatment are not offered everywhere but may be the best option in a particular situation. Examples: laser surgery, RFA, cryosurgery, hyperthermia, etc... If anybody learns about a new treatment option, please do not hesitate to share :-)


#4

Elodie, i would like to say how thankful i am that i have found this site. Your blogs and discussions are always so informative and helpful. I am always on the look out for what new treatments are out there for my husband...this helps us to remain positive and be proactive in our treatments. Thankyou again



Elodie Espesset said:

The Liddy Shriver Sarcoma Initiative has many good informative articles about sarcoma. Bruce Shriver who lost his daughter to Ewing's sarcoma has spent a lot of energy pushing sarcoma specialists from all around the world to write articles for his website and I strongly advise newbies to look through them as a starting point:

http://sarcomahelp.org/index.html

I would recommend in particular the article about second opinions:

http://sarcomahelp.org/sarcoma_second_opinions.html

In a perfect world, a patient should actually see a specialist before the biopsy. Unfortunately a lot of patients end up having "oops" surgery because the radiologist didn't think about sarcoma when he/she interpreted the images.

Of course, it is never too late to get a second opinion and for Americans who need financial help in doing so, the Sarcoma Alliance can help:

http://www.sarcomaalliance.org/assistance.shtml

To be noted, not all specialists agree on the appropriate treatment depending on the situation. So when you don't like the treatment offered, it makes perfect sense to get several additional opinions (you don't have to stop at 2) . Some types of treatment are not offered everywhere but may be the best option in a particular situation. Examples: laser surgery, RFA, cryosurgery, hyperthermia, etc... If anybody learns about a new treatment option, please do not hesitate to share :-)