Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Martin
I am truly glad to hear of no new and or significant growth
Great news : )
Remind us of primary tumor on back with positive margins but with vascular invasion ax per your report on 2015

The pain is where on back ?
I would ask for MRI of the area to ease your mind

Let us know when able
Until then my friend
Night
Love
Debbie

Hi Debbie,

I have no pain on my back now, I refered to the pain I felt 2 years ago when I first noticed the lump on my back.

Hi everyone,

yesterday by touching my lower arm I noticed very very small lump (if I can call it that way) on my arm. between my hand end elbow.

it is not visible but if you pass over the area you can feel it. seems softer that the one I had on my back which was the primary ASPS.

do you know if there is anyway with MRI or something else to determine what it is or i just go and ask for it to be removed?

I'll probably go sometime next week to see if is easily removed as it is just under the skin and with my diagnosis I would not risk with waiting

Martin, there are small lumps in every ones subcutaneous fat tissue and it is just not feasible to resect every one of these. Besides you can not just have a small resection if the soft tissue met is suspected - it is expected to be 20 mm around it margins resected to make it clean. So the usuall workout needs to be done as if that was the unknown soft tissue tumor with the suspicion that it might be a soft tissue metastasis given the history of the ASPS in the patient. MRI is the best scan, but actually an ultrasound - a very inexpensive scan and widely avail. is often used to get a feel if there is any suspicious substance in this lump. Is it fairly small now, like 5 mm or more?

According to me is even less than 5mm. It is not visible at all I need a sec to find it by pressing my arm

I'll try to get an ultrasound these days and MRI also but I'm thinking od asking a resection regardless of the result, as according to the past and cases here none of the screening tools are the most reliable when it comes to ASPS.

Maybe a bioptical resection to remove it to dermine what it is and than in case of recurrence or met to make wider resection as I did on my primary

Martin
Josh had a subateous cyst on his neck removed in 2014 that was benign
The scan or ultrasound should show whether there is a vascular component involved .I agree with Olga in using the 2 above and letting your oncologist make the call.
Especially as it is near the surface ?


Remind us where it is relative to where your primary was located ?

Dear Martin, I am grateful that you are taking a pro-active approach to trying to determine the nature of your recently felt very small lump on your arm. I agree with Olga and Debbie that you should obtain an MRI or ultrasound to try to best diagnose what the lump is. However, if the lump is determined to be suspicious for being a tumor, I would personally advise you to have it completely resected instead of having a biopical resection so that it can be completely removed with good margins without risking the possible spread of tumor cells into the blood stream as can happen with biopsy procedures. Brittany had a small subcutaneous abdominal met successfully removed in a short outpatient procedure about seven years ago and there has thankfully been no tumor recurrence since it was removed. Hopefully your small lump is not an ASPS met, but if it is determined that it is one, it is fortunate that you found it at a very small and easily resectable size. Take care dear Martin, and keep the Board updated as you are able. With special caring thoughts, healing wishes, and continued Hope, Bonni

thank you all for the advises,

I will see next Tuesday a surgeon so that he can send me to MRI or Ultrasound before deciding anything.

According my GP as it is moving around when touching and is very close to surface should not be serious but seeing the situation i would not leave it as it is and will do the scans

Hi everyone,

First of all to all of you women here Happy Women/Mothers day

Latest update - 2 years after my surgery/diagnosis

I had my chest CT done end of January and Abdomen and Pelvic MRI 2 weeks ago.

Both are clear/stable same as before.

Did not do Brain MRI, according the schedule should be in June.

the small lump that I had in my arm I had it removed by a plastic surgeon. She identified it as coagulated blood in a small arm vein. I wanted to take a sample and bring to pathology but the surgeon was very certain to identify it as coagulated blood cloth and when she cut through after removal basically nothing left of it, was 1-2mm.
Unfortunately now I would not know what actually it was if the surgeon could be wrong

I did few test just to test my blood coagulation and other parameters in case I have something that need treatment but they all came pretty normal

more or less I've been doing all the normal staff I do, running cycling,
I was very restrictive to sugar and meat since the diagnosis, but lately I've started to eat chocolates and sweets again. Something that I need to stop

Martin

So happy for the news!
I would imagine that the surgeon took a look see under the microscope at the tissue and that told them a lot .
All they needed to know .

A little chocolate is sure a comfort food, at least to me.

Love
Debbie

Hi to everyone,

its been a long time since I've posted anything and even missed to read a lot. I've been traveling a lot this summer connected with my work so time flied away which was not to bad and kept me busy not thinking a lot on ASPS. Unfortunately I see a lot of new diagnosed people and honestly makes me really sad.

I did my regular CT 4 moths schedule end of May. Results same as last time. is written all OK but still are mentioned 2 small nodules 4 and 5 mm that are there from the first time I did the scan in Feb 2015. The radiologist that is the same looking my scans all the time is very confident to say that those are not mets and are inflammatory nodules that have been there but still I do not have 100% confidence and I'm being very careful on that.
Usually I'm doing the scan without contrast as I can not tolerate it well but in the past 3 years I do from time to time 1 per year with contrast.

I was not able to schedule and MRI as they had busy schedule in June so I did it in July.
My abdomen and Pelvic as the radiologist sad are OK but I'm still waiting on a written report

I did Brain after 1 year 2 weeks ago, which came clear.

So I spent a lot of time waiting for results these 2 months. Very happy that at least for now all is stable. 2 years and 7 months have passef from my surgery. and almost 3 years since I felt the lump in my lower back Sept 2015

Martin
All great news to hear !
Now for that celeblatory chocolate .

Hi to all,

I just want to post that 2 weeks ago I had the regular 4 month CT chest scan, that showed again same as all the ones before.
2 nodules with same size in mm from the fist day. One is 5mm other is 3 or 4mm.

I can not say how grateful I'm to have this good result after almost 3 years from my diagnose. Still I'm very scared on these on these nodules that are sitting in the back of my mind as something that can go wrong.

I'm not sure if biopsy is a smart idea seeing that I have them all the time with no change.

I did a abdomen and pelvic MRI last week and I'm still waiting on the result.

I might move the CT to 5 months as even my radiologist suggest to avoid as much as possible the radiation from the CT

My prayers are with all of you there fighting every day

Glad to hear good/stable results on chest ct.

I don't think biopsy is necessary though, because it could cause seeding and it's most likely asps nodule anyway.

Risks with biopsy are almost as big as treating nodules with cryoblation, so I wouldnt risk bleeding with biopsy.