Quantcast

New diagnosis of SS in the foot..... Suggestions on how to go about treatment?!


#1

My sister was diagnosed with SS in her foot less than 1 year ago; She had surgery to remove it ,as well as radiation; however it has come back same foot, but different area. She has only gotten one opinion and currently was told her option was to amputate. She asked for a second opinion, and is now seeing a medical oncologist, who hasnr given her much options as well. we keep hearing that SS of the foot is very rare, thus limited options. So after speaking with another Dr; he would like to enroll her into a phase I clinical study trial, with no medical benefit to her. I am at loss, because we dont seem to be on the same page, in regards to her seeeking traditional chemo


#2

Your sister needs to go to a sarcoma center for another opinion.

http://sarcomahelp.org/sarcoma-centers.html


#3

Hi my son was diagnosed 2 days before his 11th birthday, they reckon it had been in his foot up to 7 yrs, they tried to get it all out, but could not , we were told chemo or rt was not really an option, so to give him the best chance of survival amputation was the only option. He had lower leg amputation , I personally don’t regret this decision to go ahead because ss is a particularly Nasty cancer . George had the op in London . And has chest scans every 3 months. I hope you get some answers xxx


#4

My story: www.livingwithsynovialsarcoma.blogspot.com

The treatment I chose instead of amputation, which has contained my cancer and stopped growth since I started in late January: www.neoplas.org

Hope you find it helpful!


#5

The safest option is likely amputation. There will be no way it comes back in the foot that doesn't exist anymore... It may not prevent metastases though. Has she got a lung CT scan? Other options are more risky. The question is how much risk is your sister willing to take to save her foot? We're talking about potentially loosing her life... It's really her decision. She needs to consider which option she may regret choosing depending on what happens next.


#6

Thanks for everyone’s responses thus far! She doesn’t want to come across as vain, however it seems that this type of cancer has a high likelihood of mets to the lungs, even in instances of amputation; which in that case, would likely need treated with chemo. She actually has come to terms with having a terminal illness; it’s the pain that has become overbearing and intrusive to her daily living. She is 34 and has to walk with the assistance of a cane. Right now, it seems a though radiotherapy would be an option to at least help with shrinking. Has anyone on here participated in a phase I clinical trial? They are looking into treating cancers with antibodies that attack certain cancer cells, but this is still work in progress it seems for SS. Does anyone know of any sarcoma centers in ohio? Thanks again, this forum has been very helpful on grasping this cancer and seeing how others have dealt with it; especially being such a nasty and rare cancer


#7

Something she should take into account when she makes her decision is the fact that taking care of lung metastases is generally easier if the primary tumor is out. Usually surgery is not an option if you have lung mets AND a primary tumor but it may be a curative option for a few lucky people with only a few lung mets...

Also sometimes an amputation can give you a better quality of life especially if the affected limb is too messed up or the tumor is very painful.

Many years ago, there was a synovial sarcoma survivor with a below-the-knee amputation in the CBS hit reality show SURVIVOR. He is a member of this group although not active:

http://www.synovialsarcomasurvivors.org/profile/ChadCrittenden?xg_source=profiles_memberList

There are at least 3 sarcoma centers in Ohio:

http://cancer.osu.edu/research/clinicalcare/sarcoma/team/pages/index.aspx

http://my.clevelandclinic.org/disorders/Soft_Tissue_Sarcoma/hic_Adult_Soft_Tissue_Sarcoma.aspx

http://www.summahealth.org/surgicalservices/orthopaedicservices/aboutourservices/orthopaedic%20oncology


#8

Thanks elodie!


#9

I was offered amputation and told it was a guarantee that the cancer would not return. I had the tumor resected instead and 28 doses of radiation. It never came back to the point of origin. It went to the lungs. For me a phase one clinical trial would only be an option if I have run out of other options. A phase one trial is usually used as a tool to work out the kinks and find out what the side effects will be and to get the dosing right.

I have never heard anyone call SS terminal before. Did her doctor say that? There are plenty of long term survivors of this cancer. I'm one of them. I was diagnosed 20 years ago. SS has definitely interrupted my life and changed the course of my life, but I'm still here. Keep the faith!!!


#10

How did you treat the mets to your lungs?



Kadie said:

I was offered amputation and told it was a guarantee that the cancer would not return. I had the tumor resected instead and 28 doses of radiation. It never came back to the point of origin. It went to the lungs. For me a phase one clinical trial would only be an option if I have run out of other options. A phase one trial is usually used as a tool to work out the kinks and find out what the side effects will be and to get the dosing right.

I have never heard anyone call SS terminal before. Did her doctor say that? There are plenty of long term survivors of this cancer. I'm one of them. I was diagnosed 20 years ago. SS has definitely interrupted my life and changed the course of my life, but I'm still here. Keep the faith!!!


#11



Sage said:

How did you treat the mets to your lungs?




Kadie said:

I had chemo, the standard AIM cocktail. And then I had thorascopic surgeries on each lung. The chemo did not shrink my tumors but it killed many of the cancer cells.


#12

20 years. That's awesome.

I was diagnosed 4.5 years ago (although I had nerve pain for several years prior). I enjoyed 2.5 years of remission, only to have the tumor come back to the same place this year.

Even with amputation, there's a chance the cancer could return elsewhere. Cancer cells need to be significant in size to be detected, and metastasis could potentially occur before the amputation takes place. Still, it definitely improves your odds.

Kadie said:

I was offered amputation and told it was a guarantee that the cancer would not return. I had the tumor resected instead and 28 doses of radiation. It never came back to the point of origin. It went to the lungs. For me a phase one clinical trial would only be an option if I have run out of other options. A phase one trial is usually used as a tool to work out the kinks and find out what the side effects will be and to get the dosing right.

I have never heard anyone call SS terminal before. Did her doctor say that? There are plenty of long term survivors of this cancer. I'm one of them. I was diagnosed 20 years ago. SS has definitely interrupted my life and changed the course of my life, but I'm still here. Keep the faith!!!


#13

One other consideration with amputation is possibility of phantom pain, which means she could potentially have ongoing pain post surgery. The odds of this happening increase when pain is present prior to surgery. This happened to my spouse who had amputation of his arm in February. He is doing PT and mirror therapy and progressing slowly toward getting off pain meds.

I offer this not to frighten you or to recommend against amputation but only to give you a range of info to consider. Our doctor discussed this with me post surgery and urged me not to bring it up unless my husband did. My husband felt a bit mislead in final analysis but we are addressing it. It has delayed follow on treatment for us. Chemo, we think doxorubicin, made pain worse so are now taking a break. Also got neutropenia and ended back in hospital following initial round

Last chest X-Ray was clear in May so trying to figure out what to do next.

All in all with complicated or very aggressive tumor, amputation may be best option. It is not necessarily the end point in treatment though

Sending good thoughts your way