Hi there,
My name is Jolie. Today my mother was diagnosed with ASPS. Four weeks ago she felt a large "lump" on her right thigh and saught medical attention at the local urgent care. They misdiagnosed it as a harmless hematoma, and told her it would go away on its own. After a week it was still bothering her (painful and large) so she went to her primary physician. He looked at it and agreed it was an abnormal, large hematoma. He proceeded to cut it open, to drain the excess blood. Shortly after he cut, he realized it was too large/not what he originally thought it would be and stitched her back up. He sent her for an MRI and referred her to an orthopedic surgeon. The MRI results indicated that the "lump" was not a hematoma, but rather a "High grade malignant sarcoma". Her primary physician told her she would need to see a specialist asap. The orthopedic doc whom she was originally referred to, saw her MRI and refused to treat her, emphasizing the need to see a specialist. Then the HMO insurance company approved a referral to a general surgeon with some sarcoma experience, deemed to be specialist enough by the insurance company standards. However, once this general surgeon saw her MRI he also refused to treat her, and advised she see a specialist. Only after all of this frustrating jumping through hoops did the HMO approve her referral to specialist at UCLA. And after being examined by the ucla orthopedic oncologist and recieving the pathology report from the biopsy, she has been diagnosed with this rare and frightening disease.
The doctor wants for her to have a full body pet scan before surgically removing the tumor in her thigh. He reasons that if he finds it elsewhere he will be able to remove them at once in one surgery. However, after reading on this forum I believe she should recieve CT scans and an MRI of her brain. Can anyone advise? Should we request these scans instead of or in addition to the full body PET scan? Also, I am afraid of encountering more obstacles with the HMO insurance not approving these scans. Any advice regarding HMOs would be very helpful.
Any advice or suggestions at all would be very much appreciated.
Thank you in advanced. I am very happy to have found this site.
Jolie
Jolie's mother from California - Dx Oct 2013
Re: Just diagnosed - seeking advice
Jolie
I am so sorry to hear of your moms recent diagnosis ,dx
Your mom is employeed and has insurance? The reason I ask does her job have an insurance human resource person that you both could talk to ? For you to help your mom you will more than likely need a medical power of attorney to talk to the job place and anyone else involved about your moms medical items.It will more than likely need to be notarized . Start a folder to keep that document and any additional info you might get as this is a life long disease
I will wait for Olga to get you up to speed on the scans
The surgery is your first quest . Find a good surgeon who knows what he is up against
With your HMO you need to have a good advocate to impress to the insurance company HOW VERY
important the scans are and WILL BE in the future. With research it can be proven and your doctor or doctors can write letters to the insurance company
ASPS is typically slow growing so discovering it at its smallest size and removing it buys a lot of years for our loved ones
So surgery ,scans are VERY important
Sarcomas are only 1% of cancers and ASPS is 1% of sarcomas
Don't let the research discourage you all. There is alot of hope to be found. Have faith
With much love
Debbie
I am so sorry to hear of your moms recent diagnosis ,dx
Your mom is employeed and has insurance? The reason I ask does her job have an insurance human resource person that you both could talk to ? For you to help your mom you will more than likely need a medical power of attorney to talk to the job place and anyone else involved about your moms medical items.It will more than likely need to be notarized . Start a folder to keep that document and any additional info you might get as this is a life long disease
I will wait for Olga to get you up to speed on the scans
The surgery is your first quest . Find a good surgeon who knows what he is up against
With your HMO you need to have a good advocate to impress to the insurance company HOW VERY
important the scans are and WILL BE in the future. With research it can be proven and your doctor or doctors can write letters to the insurance company
ASPS is typically slow growing so discovering it at its smallest size and removing it buys a lot of years for our loved ones
So surgery ,scans are VERY important
Sarcomas are only 1% of cancers and ASPS is 1% of sarcomas
Don't let the research discourage you all. There is alot of hope to be found. Have faith
With much love
Debbie
Debbie
Re: Just diagnosed - seeking advice
Hi Debbie,
Thank you for your reply. My mom lives in california, in the LA area while I live in nyc. My step father already has medical power of attorney. She is currently employed, however she is on my step father's insurance plan. He works for a small company, with no HR department. From our frustrating experience with receiving approval of the specialist referral, I fear we will face more obstacles with the HMO.
Her surgeon is Dr. Francis Cyran at UCLA. He works with a team at UCLA to determine treatment course, etc. I believe he is qualified for the surgery.
My first concern is whether we should be pushing for the CT and MRI scans this early in the diagnosis process. Dr Cyran wants my mom to have a full body PET, but after reading on this forum it seems that PET scans are not successful at imaging small sites.
He will schedule surgery in 2 weeks, after scans come back.
Thanks again, and I welcome any more advice from anyone else.
Jolie
Thank you for your reply. My mom lives in california, in the LA area while I live in nyc. My step father already has medical power of attorney. She is currently employed, however she is on my step father's insurance plan. He works for a small company, with no HR department. From our frustrating experience with receiving approval of the specialist referral, I fear we will face more obstacles with the HMO.
Her surgeon is Dr. Francis Cyran at UCLA. He works with a team at UCLA to determine treatment course, etc. I believe he is qualified for the surgery.
My first concern is whether we should be pushing for the CT and MRI scans this early in the diagnosis process. Dr Cyran wants my mom to have a full body PET, but after reading on this forum it seems that PET scans are not successful at imaging small sites.
He will schedule surgery in 2 weeks, after scans come back.
Thanks again, and I welcome any more advice from anyone else.
Jolie
Re: Just diagnosed - seeking advice
Hi Jolie
Are they waiting on the scans to do surgery?Or to assess the overall possible spread of ASPS?
The ASPS is in her leg?
Thanks
Debbie
Are they waiting on the scans to do surgery?Or to assess the overall possible spread of ASPS?
The ASPS is in her leg?
Thanks
Debbie
Re: Just diagnosed - seeking advice
Hi Jolie, welcome to the forum.
First of all it blows my mind away that any doc would attempt to drain the mass without at least running an ultrasound on it - this scan is really cheap and available but shows the warning signs very well.
You are saying that "The doctor wants for her to have a full body pet scan before surgically removing the tumor in her thigh. He reasons that if he finds it elsewhere he will be able to remove them at once in one surgery." - you might have misunderstood the doctor's reasons for requesting the scans. Removal of the primary from the thigh can not be done during the same surgery if anything else is found in her body. The real reason is the staging. He is trying to determine if her sarcoma has already spread elsewhere distantly and if it has, how advanced the metastatic disease is. In some cases when the disease is very advanced and the distant mets are advanced - like really big and multiple and potentially unresectable - they surgeons are instructed not to remove the primary at all and to proceed with treating the patient in a palliative manner - not trying to cure him but merely trying to easy the pain. There is nothing really unusual in this surgeon behavior as it would make a sense with most other fast growing sarcomas and cancers but not with ASPS. Tell your mom that there is another very familiar with ASPS surgeon at the UCLA and that she would be better off if she tried to switch the doc or request the second opinion from him - we have a few members from that area here and Amanda will def. add her comments if she sees it later, but as far as I found in her posts, she sees Dr. Charles Forscher - his specialty is Sarcoma at Cedars Sinai hospital in LA. If this doc is out of the chain, then probably the first one is still ok.
If the PET scan he requests can not be postponed for after the primary surgery, and the insurance is approving - then it is OK to do that first, it would merely rule out that she does not have any very large advanced mets - the ones that would be seen by the PET in ASPS setting. All other scans - CT, brain MRI - could wait for after the initial primary surgery. You do not even want them to find out if there is something small elsewhere now so they would not stuck contemplating what is the best way to proceed - the best way to proceed is the surgery so get there in a fastest way possible, I would even try to demand it to be done without any waiting for the PET scan first saying that it is very painful and she can not work (it might be painful since the stupid doc cut into the tumor).
Good luck. Advise them to read the board and participate by themselves - not to make an attempt to reiterate what you read to them - some info might be lost in between the lines.
First of all it blows my mind away that any doc would attempt to drain the mass without at least running an ultrasound on it - this scan is really cheap and available but shows the warning signs very well.
You are saying that "The doctor wants for her to have a full body pet scan before surgically removing the tumor in her thigh. He reasons that if he finds it elsewhere he will be able to remove them at once in one surgery." - you might have misunderstood the doctor's reasons for requesting the scans. Removal of the primary from the thigh can not be done during the same surgery if anything else is found in her body. The real reason is the staging. He is trying to determine if her sarcoma has already spread elsewhere distantly and if it has, how advanced the metastatic disease is. In some cases when the disease is very advanced and the distant mets are advanced - like really big and multiple and potentially unresectable - they surgeons are instructed not to remove the primary at all and to proceed with treating the patient in a palliative manner - not trying to cure him but merely trying to easy the pain. There is nothing really unusual in this surgeon behavior as it would make a sense with most other fast growing sarcomas and cancers but not with ASPS. Tell your mom that there is another very familiar with ASPS surgeon at the UCLA and that she would be better off if she tried to switch the doc or request the second opinion from him - we have a few members from that area here and Amanda will def. add her comments if she sees it later, but as far as I found in her posts, she sees Dr. Charles Forscher - his specialty is Sarcoma at Cedars Sinai hospital in LA. If this doc is out of the chain, then probably the first one is still ok.
If the PET scan he requests can not be postponed for after the primary surgery, and the insurance is approving - then it is OK to do that first, it would merely rule out that she does not have any very large advanced mets - the ones that would be seen by the PET in ASPS setting. All other scans - CT, brain MRI - could wait for after the initial primary surgery. You do not even want them to find out if there is something small elsewhere now so they would not stuck contemplating what is the best way to proceed - the best way to proceed is the surgery so get there in a fastest way possible, I would even try to demand it to be done without any waiting for the PET scan first saying that it is very painful and she can not work (it might be painful since the stupid doc cut into the tumor).
Good luck. Advise them to read the board and participate by themselves - not to make an attempt to reiterate what you read to them - some info might be lost in between the lines.
Olga
Re: Just diagnosed - seeking advice
Hi Olga,
Thank you for your reply. Unfortunately her primary doctor cut into her leg before he ordered the ultrasound.
The doctors at cedar Sinai are not in her insurance group. However, if there is another doctor at ucla that is more experienced with this type of sarcoma we may be able request his opion. I am under the impression that all of the sarcoma specialists work together to diagnose and plan treatment, so maybe the other experienced doc at ucla has already contributed his opinion?
My mom is hesitant to push back against the doc and request surgery before the pet scan. Perhaps he will be looking out for other tumor locations in her leg that he could remove at once?
The waiting is so terrible. My mom is a very strong person, and I am confident that she will kick this disease to the curb... We just need to know exactly what we are dealing with.
Thanks again,
Jolie
Btw Debbie - the doc wants to perform surgery after the scans so they can stage and also so he could take out any other tumors that may be the leg.
Thank you for your reply. Unfortunately her primary doctor cut into her leg before he ordered the ultrasound.
The doctors at cedar Sinai are not in her insurance group. However, if there is another doctor at ucla that is more experienced with this type of sarcoma we may be able request his opion. I am under the impression that all of the sarcoma specialists work together to diagnose and plan treatment, so maybe the other experienced doc at ucla has already contributed his opinion?
My mom is hesitant to push back against the doc and request surgery before the pet scan. Perhaps he will be looking out for other tumor locations in her leg that he could remove at once?
The waiting is so terrible. My mom is a very strong person, and I am confident that she will kick this disease to the curb... We just need to know exactly what we are dealing with.
Thanks again,
Jolie
Btw Debbie - the doc wants to perform surgery after the scans so they can stage and also so he could take out any other tumors that may be the leg.
Re: Just diagnosed - seeking advice
Jolie
What Olga was saying about getting the surgery as soon as possible is VERY good advice
Take the forum in print and fax it to her proposed surgeon as soon as is comfortable for you all
There are some medical papers out there that suggest that with further spreading of the sarcoma from the primary site suggest a cancer inoperable . It is not the case with this cancer. I cannot say it enough. It is very typically slow growing
The staging is helpful but not applicable to ASPS
You guys are doing a great job in asking questions our family has been involved for alittle over a year and we have become a lot stronger and a whole lot more hopeful over this time after researching and finding the answers we needed
Do not give up !
Debbie
What Olga was saying about getting the surgery as soon as possible is VERY good advice
Take the forum in print and fax it to her proposed surgeon as soon as is comfortable for you all
There are some medical papers out there that suggest that with further spreading of the sarcoma from the primary site suggest a cancer inoperable . It is not the case with this cancer. I cannot say it enough. It is very typically slow growing
The staging is helpful but not applicable to ASPS
You guys are doing a great job in asking questions our family has been involved for alittle over a year and we have become a lot stronger and a whole lot more hopeful over this time after researching and finding the answers we needed
Do not give up !
Debbie
Debbie
Re: Just diagnosed - seeking advice
Jolie
Don't want to put too much on you but here is the link on grading
As I understand it grading helps to determine a treatment plan and the only plan now should be to remove the tumor from your moms leg if possible Period
http://surgpathcriteria.stanford.edu/so ... ading.html
Debbie
Don't want to put too much on you but here is the link on grading
As I understand it grading helps to determine a treatment plan and the only plan now should be to remove the tumor from your moms leg if possible Period
http://surgpathcriteria.stanford.edu/so ... ading.html
Debbie
Debbie
Re: Just diagnosed - seeking advice
Hello,
i am so sorry that this is happening to you an your mother
this is a list of my Oncs... The first is Dr Brian an no matter what get her to him ASAP and pay cash if needed! Bring all scans an all information... If he is involved the HMO may just say ok go to him not many will cross him... Also he will be watching over your treatment an there are sarcoma specialists at UCLA and he will give you a name of one he feels can deal with ASPS... He has seen a lot of sarcoma an having this surgery done correctly helps in the fight to make it thru this war!
I have four Oncs and i will give them all to you...
This is the Onc that removed my primary in my right calf. He is in my opinion the best ...
Dr Earl Brian
310-423-9887
This is the radiation Onc and also a sarcoma survivor and full of love for his paitents!
Dr Behrooz Hakimian
Cedars-Sinai Hospital Los Angeles Ca
My Main Onc and is dam good with the drugs and also see's other ASPS paitents here in California. he is mellow and very nice.
Dr Charles Forscher
310-423-8045
My Chest Onc that did the operation on me for a partial removal of the 8th rib and five things in my lungs is:
Leland J Foshag MD
11818 Wilshire Boulevard Suite 200
Los Angeles, CA 90025
Phone: (310) 479-1215
CT scan with contrast lungs...
MRI brain with contrast..
Bone scan..
PET / CT for full body...
I am also a mother an tell her i send her a HUGE hug!
This cancer is a race and you need the head start! No waiting an wondering act an strike please it is how we win this fight....
If your mom would like to call me please pvt msg me an I will give you my phone number to call <3
I know its frightening and right now it all feels out of control! But, acting like you are at war will direct those feelings in a direction that will save lives an give that controle back...
i am so sorry that this is happening to you an your mother
this is a list of my Oncs... The first is Dr Brian an no matter what get her to him ASAP and pay cash if needed! Bring all scans an all information... If he is involved the HMO may just say ok go to him not many will cross him... Also he will be watching over your treatment an there are sarcoma specialists at UCLA and he will give you a name of one he feels can deal with ASPS... He has seen a lot of sarcoma an having this surgery done correctly helps in the fight to make it thru this war!
I have four Oncs and i will give them all to you...
This is the Onc that removed my primary in my right calf. He is in my opinion the best ...
Dr Earl Brian
310-423-9887
This is the radiation Onc and also a sarcoma survivor and full of love for his paitents!
Dr Behrooz Hakimian
Cedars-Sinai Hospital Los Angeles Ca
My Main Onc and is dam good with the drugs and also see's other ASPS paitents here in California. he is mellow and very nice.
Dr Charles Forscher
310-423-8045
My Chest Onc that did the operation on me for a partial removal of the 8th rib and five things in my lungs is:
Leland J Foshag MD
11818 Wilshire Boulevard Suite 200
Los Angeles, CA 90025
Phone: (310) 479-1215
CT scan with contrast lungs...
MRI brain with contrast..
Bone scan..
PET / CT for full body...
I am also a mother an tell her i send her a HUGE hug!
This cancer is a race and you need the head start! No waiting an wondering act an strike please it is how we win this fight....
If your mom would like to call me please pvt msg me an I will give you my phone number to call <3
I know its frightening and right now it all feels out of control! But, acting like you are at war will direct those feelings in a direction that will save lives an give that controle back...
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Just diagnosed - seeking advice
Hi Amanda,
Thank you for your reply. My family and I are all currently on vacation for a wedding, so my mom has not been 100% focused on her diagnosis yet. However, I do think she would love to speak with you about ASPS eventually. We are all processing the diagnosis in different ways - I am a planner by nature and tend to act quickly in all aspects of life, while my mom is a bit more free spirited and relaxed. When I read about how rare this subtype of sarcoma is I was fearful we would have a hard time finding resources for information online, I am extremely grateful for this forum - and for each of your quick and thoughtful responses. Anyway, Amanda -I will PM you for your number and pass it along to my mom. I very well may end up calling you as well
My mom has read all of your replies, and she appreciates the recommendation to seek out opinions from the docs at cedar Sinai, however she likes her current onc very much. Also, as I said earlier, her HMO does not cover cedars Sinai. My family does not have the financial capability to pay cash to visit him. For now we will stick with the UCLA doctor. She will have the PET scan Wednesday (she returns to California from our trip on Tuesday). When she spoke with her doctor he was confident that he would surgically remove the tumor in her thigh the week of October 24th. He showed no indication that he would cancel surgery based on scan results, rather (it seems like) he wants to be sure there are no other tumors in her legs which he could remove at one time along with the primary. My mom did say he was concerned that her primary physician had sliced into the leg thinking it was a hematoma, however he doesn't think he cut into the tumor itself, but rather the tissue surrounding it. He told my mom he would remove the scar tissue along with the tumor to be safe.
Anyway, for now, we will just wait for the scan result. I have been visualizing the malignant cells all sealed up tight in the primary tumor, and I deeply hope we do not find the disease elsewhere.
The waiting is tortuous...
Thank you all again for your support. I will be sure to update as soon as we hear anything else.
Thank you for your reply. My family and I are all currently on vacation for a wedding, so my mom has not been 100% focused on her diagnosis yet. However, I do think she would love to speak with you about ASPS eventually. We are all processing the diagnosis in different ways - I am a planner by nature and tend to act quickly in all aspects of life, while my mom is a bit more free spirited and relaxed. When I read about how rare this subtype of sarcoma is I was fearful we would have a hard time finding resources for information online, I am extremely grateful for this forum - and for each of your quick and thoughtful responses. Anyway, Amanda -I will PM you for your number and pass it along to my mom. I very well may end up calling you as well
My mom has read all of your replies, and she appreciates the recommendation to seek out opinions from the docs at cedar Sinai, however she likes her current onc very much. Also, as I said earlier, her HMO does not cover cedars Sinai. My family does not have the financial capability to pay cash to visit him. For now we will stick with the UCLA doctor. She will have the PET scan Wednesday (she returns to California from our trip on Tuesday). When she spoke with her doctor he was confident that he would surgically remove the tumor in her thigh the week of October 24th. He showed no indication that he would cancel surgery based on scan results, rather (it seems like) he wants to be sure there are no other tumors in her legs which he could remove at one time along with the primary. My mom did say he was concerned that her primary physician had sliced into the leg thinking it was a hematoma, however he doesn't think he cut into the tumor itself, but rather the tissue surrounding it. He told my mom he would remove the scar tissue along with the tumor to be safe.
Anyway, for now, we will just wait for the scan result. I have been visualizing the malignant cells all sealed up tight in the primary tumor, and I deeply hope we do not find the disease elsewhere.
The waiting is tortuous...
Thank you all again for your support. I will be sure to update as soon as we hear anything else.
Re: Just diagnosed - seeking advice
Jolie
Thanks so much for the update I am very relieved to hear of the scheduled surgery
You and your mom sound like a good duo raising to the fight against ASPS
We all totally understand that tortuous feeling of the waiting for results
but the day of surgery will be here before you know it!
In the mean time let each other know how incredibly wonderful it is to have each other!
You are doing a great job
Have a beautiful day and take care of you too
Love
Debbie
Thanks so much for the update I am very relieved to hear of the scheduled surgery
You and your mom sound like a good duo raising to the fight against ASPS
We all totally understand that tortuous feeling of the waiting for results
but the day of surgery will be here before you know it!
In the mean time let each other know how incredibly wonderful it is to have each other!
You are doing a great job
Have a beautiful day and take care of you too
Love
Debbie
Debbie
Re: Jolie's mother from California - Dx Oct 2013
Hi all,
I wanted to give you all an update. My mom had a full body PET-CT scan on 10/17 which thankfully did not show any spread! On Tuesday she had the tumor removed from her right thigh. The doctor said it was the size of a softball, yikes! In 3 weeks once the surgical site is healed she will start radiation. She's home and healing super fast! We were all so thankful and relieved when the doctor called us last week to tell us the scan results.
Thanks for all the support and information.
On Monday we go back to see the surgeon to check the wound and whatnot. What questions should we ask other than scans in 3 months?
I hope everyone is doing well!
Jolie
I wanted to give you all an update. My mom had a full body PET-CT scan on 10/17 which thankfully did not show any spread! On Tuesday she had the tumor removed from her right thigh. The doctor said it was the size of a softball, yikes! In 3 weeks once the surgical site is healed she will start radiation. She's home and healing super fast! We were all so thankful and relieved when the doctor called us last week to tell us the scan results.
Thanks for all the support and information.
On Monday we go back to see the surgeon to check the wound and whatnot. What questions should we ask other than scans in 3 months?
I hope everyone is doing well!
Jolie
Re: Jolie's mother from California - Dx Oct 2013
Jolie and family
What wonderful news to hear and end the day with!
You guys must be so happy and relieved
Here's to a full recovery on the operated leg !
Thanks for the update
Love
Debbie
Ps there were clear margins with the surgery ? What are the doctors suggestion to scan in three months besides the leg area?
What wonderful news to hear and end the day with!
You guys must be so happy and relieved
Here's to a full recovery on the operated leg !
Thanks for the update
Love
Debbie
Ps there were clear margins with the surgery ? What are the doctors suggestion to scan in three months besides the leg area?
Debbie
Re: Jolie's mother from California - Dx Oct 2013
Hi!
Yes we are so happy. About to carve pumpkins with my little sister (she's 10, I'm 22). They have sent the tumor and muscle to the pathologist who will analyze it to ensure clear margins, I believe. Doc said the pathologist will study it to make sure that they do not need to go back in to remove more tissue. She had one of the four muscles in her quad removed, but the other 3 should be able to compensate and she will eventually be able to walk normally... The human body is amazing!
The plan is to have full body PET-CT scans every 3 months for the first 18 months, then every 6 months for 2 years...
Jolie
Yes we are so happy. About to carve pumpkins with my little sister (she's 10, I'm 22). They have sent the tumor and muscle to the pathologist who will analyze it to ensure clear margins, I believe. Doc said the pathologist will study it to make sure that they do not need to go back in to remove more tissue. She had one of the four muscles in her quad removed, but the other 3 should be able to compensate and she will eventually be able to walk normally... The human body is amazing!
The plan is to have full body PET-CT scans every 3 months for the first 18 months, then every 6 months for 2 years...
Jolie