Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I hope I am posting in the right area. I am 32 years old and female! In October this year I had a hysteroscopy d and c for a polyp in my cervix! A week after surgery my dr called me into the office and the polyp was diagnosed as ASPS I underwent a total hysterectomy on nov 16th! The tumor was only 1cm by 0.8 cm I am confused though because everywhere I read about ASPS states that the tumor has a certain gene expression of chromosome x;17 my tumor did not test positive for this chromosome (in any of the 200 cells tested) however under microscopic examination it looks like ASPS has anyone investigated this with their our pathology or had their path sent for additional testing? I partnered with a pathologist in Texas ( I am in chicago) who uses certain stains to make diagnosis and he found it odd as well that the tumor looks like ASPS but does not have the genetic makeup of ASPS! I am hoping someone here can shed some light

Annika

Hi Annika, welcome to the board. There are some cases of ASPS in cervix described in the published med.articles, go to the Pubmed.gov and do a search "ASPS cervix" it is where I saw these abstracts, there might be some add info re. pathology to. The good news for you is that the prognosis with ASPS tumors originated there is generally much better then anywhere, probably it is a result of a different make up of these subgroup within the ASPS group of sarcomas?

Welcome, Annika

What scans have you had so far?

Before my hysterectomy I had a CT scan and a chest x-ray all lymph nodes were free as well as all margins of the uterus

Hi Olga,
Yes believe me I have read EVERYTHING about ASPS as well as all the literature online of cervical ASPS but cannot find any infor on the path not having that gene profile ?????? This might help give some insight on treatment afterwards? Who knows but my oncologist wants me to do chemo and radiation but the chemo drugs he wants to use have to impact on the sarcoma according to literature? And I really don't want to endure treatment like that if it will not help. This is my second cancer in 6 years as well! I had papillary thyroid cancer in 2004 and I had radioactive iodine treatment in pill form for that and I believe this is why I now have this sarcoma??? Again who knows

Try this one, it might be what you are looking for and it comes with the free full text:

Uncommon sarcomas of the uterine cervix: a review of selected entities.
http://www.ncbi.nlm.nih.gov/pubmed/16981999

I would not do chemo and radiation but the decision is between you and your oncologist - who might be not the biggest expert in sarcomas?
Where are you getting your treatment? Get the second expert opinion from one of the big places on the pathology (review and re-evaluation) and on the treatment strategy.

Hello Annika,
I am so sorry that this is your second round in a cancer !
But, as Olga stated where it was and the size are very good outcomes. It maybe that the removal alone was enough!
I agree 100% do not do chemo and do not do radiation and please see only a sarcoma specilist!
I am very glad you found this forum and though i am happy you did i am so sorry that you have ot deal with this yet again...
Be strong and stay positive because this maybe a *watch* for a possible return if there is even a return of ASPS..

Ok so my oncologist is at Rush University Medical center in chicago! He did do a fellowship at Sloan Kettering and has contact with one of the head docs there that is aware of ASPS however, because of the rarity of the sarcoma and the location neither him or the doc at Sloan have encountered this in the cervix. So my next question is since my abdominal wash, nodes and uterus was free of the ASPS and it was in the cervical polyp alone is it safe to assume I am technically " surgically free of the sarcoma"????? I definitely do not want chemo and if the radiation helps I am all for it! I live in chicago and have 4 small children and I feel like I am stuck because I really don't have the room to travel out of state to a sarcoma specialist! However my oncologist said he can get me an appt with a dr at Sloan I just have to fly out there or should I try MD anderson This is very overwhelming and I just had my hysterectomy 2 weeks ago today so I am still healing physically and all this mental stress is not helping

MSKCC is good enough - the same level as MDACC, I would suggest - go for it - unless you can decide yourself based on the published literature, but you need to obtain full texts of the articles and look for the newer ones, not 10-20 years old when multislice scanning was not avail. and people that were assumed negative might in fact been metastatic with the scans not sensitive enough to find it at the moment of staging. Also your oncologist will accept the advice of the MSK consulting sarcoma doctor.
Why are you so easy about the radiation therapy and in the same time so opposed to chemo? From my point of view they both are very toxic, secondary cancers and functional damage of the adjacent organs from the radiation is as bad as the acture toxic effects of the chemo. And the most important thing that ASPS is not sensitive to the conventional radiation (it is sensitive to radiosurgery - the radiation given in narrow beam high dose but you have no target for the radiosurgery, it can only be used when there is an actual tumor but you now how the whole around surgery area in question so they can only use conventional radiation therapy).

well physically radiation, to me at least, does not cause as much harm in the immediate meaning i will probably not get as sick. I did get the full text from the link u sent me and i am grateful i have not seen this one and it is very promising as Cervical ASPS is different somewhat than soft tissue ASPS. what however is the best scanning to check for mets. I did have a CT before surgery and it did not pick up the 1.1cm x 0.8cm tumor in the cervix. I originally had an ultrasound in the er 4 weeks before surgery which showed 2 small tumors in the cervix that were thought to be fibroids or polyps. I didn't know it was malignant until one of the polyps were removed during the d and c, so going into the hysterectomy i knew there was at least one tumor left in the cervix left even though the CT didn't pick it up. So again i ask if the lymph nodes had no metastatic cells is it safe to say the cervix was the primary site????

You have to get a post-surgical MRI in about a month after the surgery to see that, that scan is very sensitive for sarcomas. Did you have lungs CT scan for the overall staging?

Annika wrote:well physically radiation, to me at least, does not cause as much harm in the immediate meaning i will probably not get as sick. I did get the full text from the link u sent me and i am grateful i have not seen this one and it is very promising as Cervical ASPS is different somewhat than soft tissue ASPS. what however is the best scanning to check for mets. I did have a CT before surgery and it did not pick up the 1.1cm x 0.8cm tumor in the cervix. I originally had an ultrasound in the er 4 weeks before surgery which showed 2 small tumors in the cervix that were thought to be fibroids or polyps. I didn't know it was malignant until one of the polyps were removed during the d and c, so going into the hysterectomy i knew there was at least one tumor left in the cervix left even though the CT didn't pick it up. So again i ask if the lymph nodes had no metastatic cells is it safe to say the cervix was the primary site????

Doesn't the primary have different pathology compared to a metastasis? They should be able to tell.

Yes Olga my CT was chest abdomen and pelvis

Hi everyone,

I had a question, but 1st a little history. I am 6 months post op from a total hysterectomy/bso for cervical ASPS. I just saw my oncologist today and was informed I need to have a CT again. After my first one in NOV of last year I had hives for 3 months afterwards. Needless to say I do not want another scan. The last CT did not even show my 2nd tumor in the 1st place the ultrasound did. I had an ultrasound in october 2010 which showed 2 small 1 cm masses in my cervix. Mid Oct I had a d&c to have one removed. So I was still walking around with the other when I had the CT done and before I knew it was ASPS, the CT NEVER picked up the tumor.

So now I question is the CT the BEST scan when looking for metastases? I would like to have an ultrasound but the Onco says "no" because I do not have a uterus anymore so it is useless.

I am really dreading this CT and almost do not wish to schedule it.

Annika

Annika - was the CT scan (that you had a problem after)done with the contrast or not? Usually people do not even feel anything after the CT so may be you are allergic to a contrast media? Are they going to do a CT of the abdomen or the lungs?