Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi,
My name is Cheryl Lippman. My son Todd was diagnosed with ASPS in June of 2005, on his 16th birthday. The primary tumor was in his right forearm. Surgery was done to remove that tumor followed by six weeks of radiation therapy. Everything remained stable until May of 2007 when multiple lung nodules were found in both lungs. All nodules were removed in August of 2007, but more nodules appeared a short time later. There has been very little growth in the lung mets since then.
Todd recently switched his care from University of Minnesota to Milwaukee, Wisconsin. We were told by the Milwaukee doctor that Todd has had a suspected liver met that has been there since 2007. The University of Minnesota never told us about this spot. It has grown from 6 mm to 15 mm since 2007. The doctor in Milwaukee prefers to monitor it, but I have sent the scans to Dr. Peter Littrup, and he said the lesion would be amenable to either cryoablation or microwave ablation. They gave me a couple of doctors' names in Wisconsin that can do the procedure, but upon further investigation, they are not covered in our insurance network. The facility Dr. Littrup is in is covered, and so I am waiting to hear back from Dr. Littrup's nurse to find out whether he would be interested in performing the surgery. Does anyone know what microwave ablation is and had any experience with it? I haven't heard of that before.

Hello an welcome!
I am sorry your son has ASPs also its nasty ...
I am so glad he has been stable an that this can be cared for The dr that gave you that information is wonderful an i would only have him do this ... I would call his office and ask them directly what it is an how it is on the patient :)YOu wil find a lot of other mothers and fathers here an patients an we are a little family that supports each other!

Cheryl, hi, welcome to the board. I will move this conversation to the Personal Updates later on to keep it organized, with the name of your son as a main subject.
1. To answer your question RFA versus cryo. These are both local percutaneous ablations using a probe inserted into the tumour, with RFA using the heat emitted to cook the tumor and cryo using the liquid to freeze the tumor. There are also other types of ablation techniques used to destroy the tumors locally in place and leaving it to the body to slowly dissipate the necrotic tissue that is left after the tumor is ablated (as opposed to the surgery that removes the tumor from the body). It is hard to compare these techniques directly which one is better for the hepatic metastases. I found some article with the full text that you can read.
Percutaneous ablation of hepatic tumors.
http://www.ncbi.nlm.nih.gov/pubmed/22550364
I know that in lungs cryo has a clear advantage versus RFA from the point of the lung tissue and close located structures - nerves, vessels, windpipes damage. Probably in the liver they are about equal.
The experience of the interventional radiologist might have bigger influence on the success of the procedure than the technique - you need someone with at least 100+ procedures experience to ensure the completeness of the ablation, less complications, no dissemination of the tumor cells along the prove track.
IMHO it is well worth flying to Detroit to have an ablation performed by Dr.Littrup esp. if insurance is paying for it, he is the top interventional radiologist and the most experienced doc in this field you can find. We are flying from Vancouver and paying out of pocket to have it done by Dr.Littrup.
2. I have a question re. lung mets situation. When you say they stayed about the same, what do you use as a reference - a scan-to-scan size change or year over year change. We had an eye opener situation at some point when the changes were reported by the radiologist as stable/minimal growth if the consecutive scans were compared, but it was like 8 mm in a year.

Dear Cheryl,
Welcome to the CureASPS Discussion Board. I am so grateful that you followed my advice to visit the site, post information about Todd's situation, and reach out for information, input, and support from the other ASPS patients and their family members on this Board. Olga, who is extremely knowledgeable, has provided you with excellent information and recommendations about ablation. I Hope that you will find the researched and anecdotal treatment experience information and the strengthening support that is available on this Board to be very helpful in fighting and managing Todd's disease, and that you will actively participate on the Discussion Board. Shared information is truly one of the strongest weapons that we all have in fighting this extremely rare and very challenging disease.
Take care Cheryl and keep in touch as you are able. I will be anxiously awaiting your next update regarding the decision for treatment of Todd's liver met.
With special caring thoughts, healing wishes for Todd, and continued Hope,
Bonni

Thank you for so kindly welcoming to the site!!!! I have been meaning to write for a long time. Todd has given me his permission to share his story, but right now is not interested in sharing directly. He is a quite stubborn and does not like to think about this disease unfortunately, so I appreciate being able to speak with all of you.

Olga, regarding your question, the lung mets have been measured scan to scan, but the scans are once a year only. Also, we have not really been given the actual measurements other than to say the biggest is about half a centimeter. I did get one of the reports of Todd's last lung scan and saw that the University of Minnesota doctor had said there was no new growth, but the doctor report in Milwaukee did note that there was about a 2mm growth in size. The University of Mn doctor lied to us a number of times. He would tell us that a scan was clear when it was not. I have no reason to think the doctor in Milwaukee is untruthful, but he seems unwilling to do anything but monitor. So I think Bonni said the best way to monitor is to compare scan reports myself and see what the lung mets measure. Todd has signed a release of information, but I'm hoping they will send me this latest scan report that he had. Any information anyone has I am very grateful for!!!

Wishing everyone the best of luck with this horrible disease,
Cheryl

Cheryl, right now the most important thing is to treat the liver met, as long as it is on a very optimal size for an ablation. And let us know what does the report say. Once a year scanning is not enough, sometimes some nodules start to grow with no reason very fast. Todd also needs to have all other scans - brain MRI and bone scan once a year, read the topic re. scanning we have with the discussion.

Dear Cheryl,
Olga has reiterated what I have told you in our personal communications and meeting about the critical importance of addressing and treating Todd's liver met as soon as possible, and the necessity of having more frequent and complete scans to pro-actively fight and manage this unpredictable and Life threatening disease. We have tragically lost far too many patients at least in part due to doctors' negligence and lack of knowledge about properly and adequately monitoring this disease with regular and adequate scans and aggressive treatment of any new mets, and sometimes the patients' own naiivety, complacency, and stubborness in not being more pro-active in their battle with this disease which can be falsely deceptive because of its indolent nature. Neither the doctors nor the patient can be complacent!! This is truly a battle and needs to be recognized and approached as such. I would strongly recommend that Todd find a different sarcoma oncologist who is willing to be more cooperative,vigilant, and pro-active with scanning and treatment. Hopefully Barb will respond to you soon with scheduling for Todd's ablation of his liver met with Dr. Littrup so that the met can be ablated as soon as possible at the smallest size with the best chance of a successful outcome to the ablation. Take care and keep in touch as you are able.
With special caring thoughts, healing wishes for Todd, and continued Hope,
Bonni

Dear Sheryl,
I at times have felt better when a dr has told me "aww its slow we can wait or lets not do this now" BUT it isn't worth the rest in between this fight An when i rested it was for a radiation break i was very messed up exhausted an in need of a stop an wait...

Please, what people are telling you is true and they are trying to help you and your son I know this is hard i am fighting this also! I am a mother and i can't even imagine how this would feel if it was my son! But, you need to stand up and start to fight more and i mean get mad and mean fight! this is a killer an it is trying to win an you must outrun it while you can and when you can!

Surgeries and treatments can save or make a huge extension in lifespan!

He will heal from the surgeries look at Ivan and me for almost four years!

Please if you need a dr let us know somone should know of one in your area

*sending oyu a hug* i again cant imagine how you feel with your son dealing with this... Just get dam mad and start pushing ahead hard!

Thank you all for your wise advice. I am so on board with you. The problem is that Todd is an adult, and if I get too pushy I risk him not letting me have access to his records and reports. So far he has taken my advice, it just takes a little convincing. He does not discuss this disease with anyone except me, and I only get five minute increments of conversation, so I am doing my best. Amanda, you are so right, whenever he hears, oh, we can put this off from a doctor, he latches onto it because he wants to forget about this horrible disease. It's just his personality, although I will never stop trying to convince him. I think as soon as I can get a doctor on board with the proper way of thinking, then Todd will be more apt to listen. I am still waiting to hear back from Dr. Littrup's nurse. I re-sent the message to her yesterday about trying to get something scheduled and she answered she was busy but would get back to me. Thank you everyone for your kindness and concern. I also wish you all strength and hope in fighting this scary, horrible disease!!! Olga, which report did you want me to quote?

We have a very detailed discussion about the follow up scanning http://cureasps.org/forum/viewtopic.php?f=12&t=819
there is a link to guidelines in one of my posts and I specifically pointed that they changed the guidelines to add recommendation for ASPS to have a brain scan.
I understand your problem with Todd, although Ivan is very pro-active himself, he is also very often skeptical of what I say and I need to provide a concrete proof to get him interested. Right now you really do not need to do anything except trying to schedule the liver met ablation, after it is (hopefully successfully) done - he might be more willing to listen to what you say. Will he go by himself (with GF?) or with you to Detroit?

This must be so hard for you!

Just chug along an know you have people here to be there for you! <3

*hugs*

Dear Cheryl,
I know from our conversations what a very difficult and frustrating situation you are facing with Todd since he is a young adult and not wanting to focus on or even discuss his disease. As an adult, he certainly has a right to make his own decisions, but I only Hope that he understands the harsh reality of this unpredictable disease, and that his stubborness, denial, and lack of a pro-active approach won't put his precious young Life at risk by him refusing to cooperate in doing everything possible to find and treat new mets at their smallest most treatable size. Truly lack of knowledge, complacency, naiively putting complete trust in doctors, stubborness, and lack of regular and complete scans are some of the greatest enemies ASPS patients have, while our greatest weapons remain a knowledgeable pro-active approach, constant research, shared anecdotal and researched information, requesting, obtaining, and keeping in a file copies of all radiology report and scans, and vigilant scans personally reviewed with the doctor and compared to scans from at least six months to a year befoe. Hopefully it won't take a harsh wake-up call of new mets or aggressive increased growth to help Todd realize and recognize the critical importance of not just ignoring his disease and Hoping it will go away.
However, given Todd's current uncooperative attitude, I agree with Olga that your highest priority needs to be scheduling and moving forward with Todd's liver met ablation since this is something that he has agreed to do. Hopefully Dr. Littrup will then be able to encourage/convince Todd to be more pro-active with managing and treating his disease, and Todd will be more receptive to his input and advice than he has been to yours.
In the meantime, know that you are not alone in this battle, and that those of us on this Board are here to listen and try to help you with shared information and strengthening support and encouragement.
With understanding of your difficult situation and the obstacles you face, special caring thoughts, healing wishes for Todd, and continued Hope,
Bonni

Thank you for all your good advice. I am sorry haven't posted in so long, just so busy with the holidays and everything!!! Todd had an MRI of the liver and CT of lungs last week. Preliminary read (only from oncologist) is that liver met could be benign hemangioma. I am suspicious of this as I have read they can appear the same as ASPS. Does anyone know anything about this? I have hope now but don't want it to be false hope. Also, sent new scans to Dr. Littrup for his opinion. He will be in office 12/30 to review scans. If he feels surgery is necessary will schedule it in January.

Happy Holidays to all of you!'
Cheryl

Do you have previous liver images to compare to? If it's growing consistently..

Todd's doctors found a liver "spot" in 2007 and failed to mention it to us. When he changed doctors in Jan. of '13, we were told that it had grown from 9 mm to 15 mm since 2007. Don't know rate of growth since abdominal scan was not taken from the 2007 one to the 2013 one. Since Jan. of '13 possible liver met has not grown. Doctor in Wisconsin advised to monitor. I contacted Dr. Littrup to get his thoughts. After seeing CT of liver in August, wanted me to send him MRI of liver, which is on its way now. Doctor in Wisconsin called Todd and told him it could be benign hemangioma. After further research I found they could present the same as ASPS. Any thoughts? Todd's hopes (and ours) are really up now, but after reading that, I am suspicious it is liver met. Also of note, Todd's lung mets showed up in 2007.

Thanks!!!