Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone! I have procrastinated for a while in posting on here, but finally forced myself to do this because I have SO many questions/concerns/etc. and have no one with similar circumstances in which to talk to! I was diagnosed with ASPS in 2005, after having a mass in the (R) side of my pelvic cavity resected. The doc had to sever two of my nerves in order to remove it, and I now have neurological deficits in my (r) side, (foot drop and numbness in buttock). I was 20 when I had the surgery back in '05 (turned the big 2-1 in the hospital) and was led to believe that it had all been successfully removed. After I was married in 2007, my husband deployed to Iraq, and long story short---the docs noticed a 2cm mass around the same area. After talking to the doc that originally removed the first mass, he said that it was nothing to worry about---only scar tissue. This 2 cm mass is on my S1 nerve root and has been ignored for the past 4 years since the doc said it was nothing worrisome.

Over the past 9 months I've developed vast bladder issues and my Urologist pushed me to find out if this mass was a reoccurance. I was scheduled for surgery last month to have a biopsy done in San Diego, but my husband and I had to move to a new duty station in NC so I cancelled it. My Urologist felt that it needed to be biopsied ASAP, so I scheduled appointments with some doctors at Duke here in NC. My doc at Duke told me at first that there was no point in biopsying it, that we would just remove it, but after the tumor board meeting a couple of weeks ago decided that it would be best to biopsy first, and if it is a reoccurance do radiation for a while before surgical removal. This past Friday he called to tell me that after speaking with three different radiologists, that they believe the biopsy would be too risky to do especially considering my 2cm mass hasn't changed in size in the past 4 years. My husband and I don't really know what to think now----we've went from one doc saying we need to biopsy ASAP, to another saying just to monitor it and see if it changes in size. I also just found out at Duke that I have a very small 4mm spot on my right lung, but my doc said that it could possibly be nothing so we will just monitor it also.

Does anyone have any advice? I don't know if I should get another opinion and push for the biopsy or just let this go. I am going nuts and have lost 15 pounds in the past 4 months just from the stress of all of this. At least if I did the biopsy I would have some closure, but then again these docs at Duke don't want to take the risk of doing the biopsy. I was also wondering about 'seeding'? Does anyone have any information on whether seeding of ASPS cells becomes an issue after a biopsy? Any info would be greatly appreciated...I am at my wits end with this mess. Thanks for listening guys!

Julie, hi, welcome to the board, sorry I did not see this post earlier. I have few questions about the situation:
1. What scan was done to investigate this area? MRI should be good enough to distinguish a scar tissue from the tumor recurrence, they give different signals there. Also PET scan might be helpful because although small ASPS tumors often missed by a PET scan (they do not lit), 20 mm is big enough and might attract enough glucose to see it.
2. You are saying that the size did not change in 2 years. What was before of that, did it appear from nowhere, like a jump growth? What was on the previous scan in that area before it was found 2 years ago.
3. If it did not change, what is the reason for your symptoms? As I understand there are some symptoms that something is not right.
P.S. I'll move this topic to a Personal Updates area to keep it organized.

Dear Julie,
I am so glad that you found your way to this Board and that you reached out for unput and advice from other Board members. I am sorry to be late with my response, but I have been out of town and away from the computer for the past two weeks. Olga has asked some very important questions which I think need to be addressed and answered before you make any treatment decisions. I would personally advise against a biopsy due to concerns of seeding the tumor cells with needle drag if the mass is an ASPS tumor. This seems like an unnecessary risk to take, and that the better option is to monitor the growth of the mass through regular scans. It is perplexing that the size of the mass has remained unchanged for the past four years, yet you are having increasing symptoms, and this issue certainly needs to be closely monitored so that a definitive cause of your symptoms can be determined. Please keep the Board updated as you are able, and know that you are not alone in your battle as all of us on this Forum know and understand what you are going through, and are here to help with shared researched and anecdotal treatment information and strengthening support and encouragment. Take care dear Julie and keep in touch.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

Hello again everyone and sorry that it has taken so long for me to respond. Olga, as for your questions: 1) I've had multiple MRI's with and w/o contrast (Gadolinium) of my chest, abdomen and pelvis area and also CT's with and without contrast. I've had a transvaginal ultrasound also done since my Onc thought that there was a 2nd mass in my pelvic area, this has however turned out to be two very large (L) ovarian cysts. I have a Myelogram CT done appx. 3 months ago that showed no communication between my CSF and the tumor. 2) The mass was first mentioned to me in 2007 while my husband was away in Iraq and the Onc that I had spoke with the one who had initially performed the resection of my original mass---the Onc who did the surgery said that it was nothing to worry about...only scar tissue. I have since had a scan done every year---some of the radiology reports since 2007 have said that there is no visible mass and others have mentioned the 2cm mass on the S1 nerve root, mentioning that it could be a possible perineural cyst, (however the myelogram CT showed no communication between the CSF and the tumor). Other radiology reports have suggested that it could possibly be a necrotic lymph node from all of the free fluid that was present after the surgery in 2005. 3) As for the reason for my symptoms, I'm not entirely sure. I've personally wondered if the large ovarian cysts could be contributing to the bladder problems since they are somewhat close to my bladder. I have an OB/GYN appointment next week and am hoping to find out more about the ovarian cysts, bladder/UTI problems, hair loss and terrible night sweats. I have had terrrible TERRIBLE night sweats for years now---they are so bad that I soak my clothes and my side of the bed and sometimes have to get up twice in the middle of the night to change clothes and sleep on a towel. Has anyone had any similar problems?

Julie - I think you could request the copy of the actual scan from 2007 (not the report) for the radiologist at the new place to be able to compare them, it may give you more info. Ovarian cysts are very common but they usually not stable but change with the cycles and you might ask them to do few more ultrasounds to compare them too. Also I think that 2 cm is not that big to cause the mass effect on the bladder. What about the hair loss -I always loose more hair in the Fall by some reason, but in the combination with the night sweats it may be thyroid or polycystic ovary syndrome (PCOS). People with cancer often have thyroid problems even if they have not been treated with the chemotherapy but just like the co-factor.

Olga,

The hair loss is not at all normal---it is half as thick as it used to be and my receding hairline is so bad I won't wear my hair up anymore. My scalp is so tender I can hardly touch it without it being extremely painful...I'm am wondering if the ovarian cysts are causing some hormone problems, but that is not near as worrisome to me as the mass on my S1. Hopefully the OB/GYN will be able to shed some light on all of this next week when I visit them. I have had a couple of radiologists compare all of my scans as I have 9 discs full of scans dating back to 2006 (everything before then was on the old-school films). Every doctor I have spoken with seems to be more concerned with the most recent scans and usually dismisses anything older than 1 month old, however I keep them just in case.

Hi Julie 
I am sorry this is also happening like you needed more to deal with ><
Anyhow, I would see an endocrinologist as soon as you can an have then run tests on you it’s not a huge deal and maybe something really easy to fix. Also, as Olga posted many have thyroid involvement. Some because of the treatments an some for no darn reason at all! Have the Endo talk to the sarcoma specialist before ANY hormones are given if that is what is needed. Also I was having this problem and it seemed to be from stress and not eating well can also affect the body’s hormone balance.

*HUGS*
Go out and have fun its Halloweeeeennnnn!

Dear Julie,
I am so sorry for all of the conflicting opinions and lack of defintive diagnosis that you have received from the oncologists and radiologists during the past few years. It is so frustrating and unnerving, but also very perplexing. If the mass has truly remained unchanged since 2007, and although ASPS can be an indolent slow growing disease as well as sometimes unpredictable, based on my ASPS experience, anecdotal observations, and researched knowledge, I personally think that it is unlikely that it is an ASPS tumor since it seems that without any kind of interventional treatment the tumor would certainly have grown at least a small amount. Having said that, it certainly bears careful and vigilant watching. Has a PET scan been done to try to determine if there is any tumor activity?
Regarding your concerning symptoms of significant hair loss and drenching night sweats, Brittany also experienced these symptoms when she developed thyroid imbalance issues caused by extended high dosage Decadron steroid use when she had brain mets. Thankfully the symptoms eventually resolved and disappeared after she discontinued the steroids. It seems that your symptoms could certainly be caused by either a thyroid or hormone imbalance, and I agree with Amanda that it would be a good idea to have both your thyroid and hormone levels tested and evaluated if that has not already been done. Hopefully your gynecologist will be able to determine the cause and a treatment for your symptoms, and also provide some answers regarding a definitive diagnosis of your still undetermined mass. I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, please take care dear Julie and know that my continued most caring thoughts are with you.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

Hello all,

I wanted to give everyone an update on my lastest biopsy results-----My oncologist at Duke called week before last to let me know that, yet again, my results are inconclusive. He said that the cytologist in the room did identify 'spindle cells' in the sample, however the sample wasn't large enough to do genetic testing or stains on. I was prepared to put all of this behind me until the gastroenterologist that did the biopsy called me on Monday (unaware that my onc had already called) and explained to me that spindle cells are only found in malignant tumors (Onc didn't explain this to me). He said that this is worrisome and consistent with the possibility of it being residual tumor left behind from the operation in 2005, however he said there is no way of 100% confirming that it is since they could only get a sample of a few cells and no stains could be performed. He did say that he agrees with my onc and we should just monitor it, and the small spot in my lung, as we have been doing every year.

I suppose my problem now is that they've identified spindle cells, but I keep reminding myself that there is nothing more that I can do besides what I have already done. The gastro says that he does not recommend a more aggressive biopsy because it could cause more nerve damage than I already have (I told him that I had terrible nerve pain after the biopsy, but it went away). I don't like sitting around waiting...I'm more of a take charge and get things done type of person, but my hands are tied now and there is nothing that I can do. Bonni, I asked about the PET scan but my onc said that he didn't recommend having one as they aren't as useful for ASPS patients (his words). I suppose I just need to put all of this on the back burner and go live my life.

Julie, thanks for an update. I would suggest you to use this time between the scans to broaden your understanding as what could be done to get rid of this thing - if anything. I would take a copy of the CT scan on a CD and sent it to consult with Dr.Littrup if this tumor could be cryoablated - sometimes the tumors in the close proximity to the nerves can be cryoablated as it is less damaging. And consult that doc. that did the radiosurgery for Tom's tumor in the similar location. The information that there were the malignant cells found is enough to get you started.
ASPS is a slow growing tumor but relentless and its slow pace of growth is the only advantage we can use to manage it. I do not support the point of just sitting and waiting for the symptoms to get worse, when they do it may be the sign that most of the modalities could not be used anymore and the advantage of having an extra time to deal with it is lost. My firm belief is that ASPS mets have to be treated when asymptomatic and as early as possible.