Cure Alveolar Soft Part Sarcoma International (iCureASPS)

My most recent scans have shown that I have one met in each breast with the one in the right breast measuring 2x2 cm.
Anyone have any experience with this?

Charity,
if I remember correctly, Alicia Parlette from SF Chronicle had met to the breast and this was how her sarcoma was found 0 it's in the chapter 1 her story http://www.sfgate.com/alicia/. It was simply removerd then and there were no reoccurence in the breast so if they are ready to remove it - let them do it. I know that Dr.Littrup does a cryoablations for the breast cancer but he is not avail. for you being Cahadian unless you want to pay you own money, right? I have seen a few articles about the ASPS breast mets before, there are a few articles from the PubMed.gov:

Alveolar soft part sarcoma metastatic to the breast.
http://www.ncbi.nlm.nih.gov/entrez/quer ... ds=8606550

Also there is a PDF file of the article from the Korean J.of Pathology
Bilateral Mammary Metastasis of Alveolar Soft Part Sarcoma - A Case Report - click on the Full taxt article link
http://www.pathology.or.kr/journal/cont ... n=20030365
I am very sorry to hear about this last development. How is your WBRT is going on?

Olga,

I have finished my WBR and will not have an MRI until December to chart progress. It went by well. My hairs all gone now.Its OK though.

My Sept 11 lung CT showed lots of scar tissue, however it noted an increase in size in the bilateral nodules in both lungs.

The troubling part is that the breast mets were never scanned previously so this is once again a waste of time since I have had so many lung scans. I emailed my oncologist once again asking to set up a biopsy since the earliest I can see him is Nov8.I would be ready to remove these 2 nodules tomorrow if I could get an appointment.

I would really like to go to on a chemo clinical trial to try and stop new growth because I have mets everywhere now. Brain, lungs ,breasts and possible liver. I am checking the ontarioclinicaltrials site.

The news is dissappointing but I will continue to fight.I will read the links you sent tomorrow morning. Thanks

Charity - what was the scanning they did when these breast mets were found? Were they found on a lungs CT? May be it makes a sense to ask to verify the findings by the MRI (and if you have something suspicious in the liver an MRI would be good for it as well). Also you need to be very accurte with the CT scans readings after the laser assosted surgery - which is in reality an open laser assisted ablation combined with the laser assisted resection. As far as I know after the ablation the size of the mets increases and then some of them are getting smaller but some stay at the same size for 6-12 month (or forever). So if they compare to the scan you had before of the surgery then what they see - there are some scars (when the mets were resected by the laser) and there are some necrotic nodules (when mets were ablated with the safety margins and left on the spot). These necrotic nodules are bigger then previous seen nodules but are the same round shape. So since you are just recently from the surgery there is no way to tell if these mets have grown or they just have been ablated - if the change is a few mm then we do not know. If they have grown a lot then may be these are real mets. Do they say what the growth is? Ivan's former radiologist used to say "a growth in most of the nodules" and it was only later that we found that the change was 1 mm - the other radiologist named it "the breathing motion correction". So I wouldn't be that concern about the lung mets at the moment. Also if the surgery will be done for the breast mets you have a chance to get this tissue tested for the chemosensitivity. There is a clinical trial open for the testing and the company who does it has their lab located in Montreal so may be you can arrange the fresh tissue shipped there. I'll find and post their contact info tomorrow, they promised to test soft tissue sarcomas free of charge. It also would be good to send some tissue to Vistica at the NCI if you can.

The screening for th breast met was a regular CT scan. I have always been wary about thhe way these radiologist read the CT's after laser surgery. I have sent Dr. Rolle a copy of the scans as well so I will wait and see what he says. I am just anixous to get these breast mets removed, so I will have to find a surgeon who can biopsy it. I can't wait for my oncologist. I would definately be interested in sending tissue for analysis so I will look forward to the the contacts.

Dear Charity,
Thank you for writing to share this information in the midst of all that you are going through. I am so deeply sorry to hear about your heartbreaking new diagnosis of breast mets. Like Olga, I urge you to have the mets treated or resected as soon as possible. If you would like to contact Alicia Parlette to discuss her ASPS breast mets experience and treatment with her, I would be glad to send you her e-mail address. To my knowledge, she has not had anymore breast mets since the original diagnosis and resection to remove them. Please keep us all updated as you are able, and know that our most caring thoughts and special prayers are with you in your continued courageous battle.
With special caring and continued Hope,
Bonni

I contacted my oncologist today an he said he is making an appointment with the womens breast center here in town for an ultrasound and biopsy.
He better get back to me this week with the times.Then I will make arrangements with montreal.

Thanks all for your support.
Charity

this is the info about the testing that I promised:

Chemotherapy Drug Sensitivity Microculture (MiCK) Assay for Apoptosis
This study is currently recruiting patients (as of Oct.4, 2006)
by: DiaTech Oncology
ClinicalTrials.gov Identifier: NCT00243685
http://www.clinicaltrial.gov/ct/show/NC ... 85?order=2
I have been contacting them trough their web-site http://www.diatech-oncology.com/Pages/FAQPatients.html via e-mail and Dr.Kravtsov their medical director told me that fee might be waived if there is no insurance paying the only thing is that oncologist or surgeon have to be agree to cooperate. Their lab is located in Montreal, there is more info in the About us http://www.diatech-oncology.com/Pages/About.html
Also reg. the appointment - basically you do not need an oncologist to make an appt. at the womens breast center so you can call them tomorrow to check if the oncologist contacted them, it is better to do it before of the long weekend to get in the line earlier.

Charity -- I don't know a lot about the Canadian health care system, but it sounds as though you may need to get a referral to a sarcoma specialist -- is your oncologist a sarcoma specialist? I have done some google searching and come up with two Web pages which I am not endorsing in any way -- perhaps if you search through them, with help from the experts in our group (for one, Olga) you can access better care -- which is what you deserve -- anyway, here are a couple to look over http://www.cancercare.on.ca/index_sarcomadsg.htm and http://www.lrcc.on.ca/professionals/phy ... errals.xml Love, Beth

Beth, now you made me smile....my oncologist IS Dr. Shailendra Verma, the first name on the list you sent me. I signed up with him about 2 years ago based on his rep since my oncolgist at the time was just giving lipservice. They don't like it when you look outside the city for treatment, but oh well.Not only do I have him as my oncologist my orthopedic surgeon is Dr. Joel Werier...also on that list.I went to Toronto for a second opinion before having an amputation and he sent me to a school chum colleague of his at MountSinai who said I should have my lung resection and an amputaion in the same surgery. How insane is that? Dr. Werier ended up amputating my leg left the incision open, said it would close on its own and wouldn't sew it up until I had the wound tested and found I was getting an infection. I had the amputation without an epidural which is the "standard of care" here in Canada. I now have the worst kind of phantom pain ever.I have been on Neurontin, Tegratal, Lyrica, Morphine for it..only provides momentary satisfaction. He wanted to kick me out of the hospital on Day3 post op. When the standard stay for an amputation is 2 weeks in a private room in Toronto. I never had any counselling or anything prior or after my amputation but because I am a strong person I just got on with rehab, got my prosthesis and went on with life. Most people don't even know I wear one until I tell them.
Anyway Ottawa has a long way to go to maintain the standard. I have and will travel to Toronto as much as possible for my treatments because these guys think I am circling the drain here and don't theink any new metasteses are urgent to treat. I just have to take control and handle my business.

Charity, I am so happy to hear that you are so strong -- my dear 23 year old son would never have it in him to take this on alone -- it's sad to hear that the so-called "best" doctors are no where near it. You have enough of a fight without having to deal with the system! I'll pray for your continued inner strength and well-being. Go girl!! By the way, my son finished his wbr on July 14 and he has only a hint of little hairs beginning to come back. He's still quite handsome with his first time ever beard and mustache - it's a guy thing I guess. Beth

Thanks for the reply. I am trying to document my whole experience in a book format because I have not being given the access I need to get the the care I deserve. I went to make an appointment after being told 2x its been made however there is no record of that at the Womens health Center. I can't get an appointment without my Dr. referral so his nurse said Tues afternoon after the long weekend is the soonest I can expect to hear. I don't mind wearing the wigs. I think for men hwo loose their hair they like the clean look for themselves.However its always nice to see your hair will grow back. Mine always does:)
Care to all who are fighting this disease.

Dear ASPS Community Friends,
I have just posted a very detailed update in the "Dana Farber Immunotherapy Vaccine Clinical Trial" segment of this Forum regarding Brittany's recent heartbreaking diagnosis of an ASPS breast met. Please refer to that entry for specific information and details, but basically the one centimeter breast met which was NOT encapsulated was successfully removed with good margins on June 4th in a two hour outpatient lumpectomy surgery. No follow up radiation is recommended at this time. It is important to note that if a scan reveals a breast "nodule", it is strongly advised to not allow a needle biopsy because if the "nodule" is a malignant ASPS tumor, it could possibly spread the cancer cells. ASPS breast mets are extremely rare, but as you can read from the entries in this post, they heartbreakingly can and do occur.
With special caring thoughts and continued Hope,
Bonni Hess