Sona from Melbourne - Dx 2019 at 31 yo

[Shamsher Singh]

Hi everyone,

My name is Sona and m from Melbourne. I am 31 yo, living with my wife And 10 months old baby girl. On 30th July 2019, I went to my family doctor for something else, and as soon as doctor any thing else? I suddenly said yeah I have got this lump on my chest ( left upper) for last 2-3 months and I think it’s getting bigger but it’s completely painless. He wrote me an ultrasound. I ignored it next 2-3 months. One day when I was having a day off. My wife who is a registered nurse said to me I ll book your ultrasound appointment go and have it done. I had it done but before I got home my doctor called me straight and said you need to go for MRI as well because it is a some sort of tumour (26*26*17) mm in your nerve. I had my MRI done next day. Then after I was referred to the surgeon then they removed it without doing any biopsy. I had my surgery done on 3.10.19 ( removed a lump which was 40*23*17mm) and one week later I was diagnosed with ASPS when the histopathology reports came back. Now after this surgery I have been called twice by the plastic surgeon unit to tell me that most probably you are going to have another surgery in the near future plus radiation. Your case has been referred to the sarcoma specialist unit in a cancer hospital in Melbourne. For that they asked to have some scans such as CT chest which showed no metastasis and a PET scan which showed no metastasis as well. I was booked for MRI brain as well which they cancelled because they said as your PET scan is negative and brain was already included so MRI brain is not needed at this stage. They had my MRI (chest) instead a Nd the result is pending. Most probably they are going to discuss my case on Wednesday with MDT at sarcoma specialist unit and will update me with the treatment plan. Till then I am anxious ... way to crazy

Any comments on my case please 🙏🏻

[D.ap]

Hi Sona
I’m truly sorry for your diagnosis of ASPS.

Question . Was the tumor emboli-zed?
And what prompted your doctor to take margins 20 mm longer than wide ?
Was it a bleeding issue ?

Be assured that the anxiety is ok to accept . It is truly scary to know we have a sarcoma .
But know that there is lots to be hopeful for as there is s a wealth of knowledge that this forum has published and found for you and I and others to use today .

Stay positive and ask lots and lots of questions .

Love ,

[Olga]

Hi Sona
welcome to our forum. It is very unfortunate that you had the need for us though, but we will help you with the information more than anyone else.
You should not be that anxious waiting for the drs appointment as it is not likely to change anything for you in the long run. They ordered the additional MRI after the surgery to try to see if the resection was complete locally and to figure out if the additional wider margins resection is needed. The histopathology report after the first resection should show if the margins of the resected specimen are clear of tumor cells.
The radiation to the tumor resection site is optional as it is unclear if there are any benefits from it in ASPS.
The main danger in ASPS are distant metastases, so the once n 3 months lungs CT scan during the first year or two are needed, with the less frequent but still very constant scanning after that time, plus the brain MRI added later once a year. Brain is very rarely the first place where metastases appear, the usual first place is lungs. It is a life-long story with the need to have the accurate scanning in place, not trying to assume you do not need it after few years as ASPS is unpredictable.
On the other hand there are patients that never had any distant metastases at all so you statistically have a hope you stay clean from that.
There is no chemotherapy regiment that is recommended before any distant mets are found. There are few active chemotherapy drugs if they are ever found plus few types of the local treatment/resection.
In the meantime you can live as normal life as you can, eat healthy, stay physically active and mentally strong.

[Shamsher Singh]

Hi I have got no clue whether it was embolized or not? Any my surgeon told me that when he saw the ultrasound pictures the shadows were approximately 26*26*17 mm and he including all other experts thought it was just a neural tumour but when he started the actual surgery he resected 40*23*17 mm this measurement was the actual once the tumour was out. So I don’t know what’s going on.. really

I really don’t know if there was any bleeding issue at all because they didn’t discuss any such thing at all with me after the operation.

[Olga]

1. I do not think it was embolized and this is the procedure that is done before of the surgery separately when the blood vessels are blocked, and you would have known that. It is not always done anyways and might be not needed.
After the surgery, the resected specimen is frozen and sliced to a whole bunch of the very thin slices and then the slices are checked to see if there is a rim border of the healthy tissue surrounds the tumor tissue. You should get the copy of the pathology report from the surgery to see what it says about that.

[Shamsher Singh]

Hi Olga
this is how it look like the report

[D.ap]

Hello again Sona
Were you given a pathology report that tells of the tumors make up ?
The histopathology report diagnosed the tumor as ASPS the microscopic anatomy exam of the cells but the pathology report tells the macroscopic ( larger overview ) tumor tissues of “what cause, mechanisms of development (pathogenesis), structural alterations of cells (morphologic changes), and the consequences of changes (clinical manifestations).” As per link below .


https://www.askdifference.com/histology-vs-pathology/
Share what you are comfortable sharing by maybe typing out what it says of the involvement etc.

[D.ap]

This is my sons pathology report .

viewtopic.php?f=61&t=1052#p8012

[Olga]

Sona, they also have to perform the Immunohistochemical analysis profile, it usually takes longer so may be it is still in the works. It is done to make an exact diagnosis. Sarcomas is a large group of 60 or so types and some of them are hard to distinguish but there are some very specific genes are present in ASPS so you should insist they prove their Dx, it is very important for the correct treatment plan.

[Shamsher Singh]

Oh thanks Olga

I think this is a question which I might be able to ask my sarcoma specialist only. Unfortunately I haven’t got to see him even once. Would you mind telling me the kind of “genes” that should be present in the immunohistochemical analysis?

In my next meeting ( which is in near future) I ll definitely raise this question that prove me I have got “ASPS”


Right??

But one thing is for sure, the plastic surgeon who operated on me said that the treatment is generally same for whatever type of sarcoma you have 😥

[Shamsher Singh]

Dear Debbie

Thanks for sharing the link

I ll ask them about pathology report as well, which they haven’t given me yet.

And I ll post it here for sure.

Regards
Sona

[D.ap]

Sona
You are so welcome .😊
If I might add , let the report come from the expert and then we will all know what to possibly look for in your care .
I agree with your surgeon, in regardless of the final dx’d , it needs to be with margins .
Love ,

[Olga]

From the surgical point of view the surgeon is correct - every sarcoma has to have a good, clean resection. But from the clinical oncology point of view, ASPS is a very specific sarcoma, different from the rest - there are about 60 types of sarcomas.

[Shamsher Singh]

Well for the very first time since I have been diagnosed I am going to see my sarcoma specialist on Monday morning to discuss the treatment plan.

Is there any specific questions I should be asking you reckon ?

Thanks

[D.ap]

Sona
You might share the scan schedule that Ivan suggested .

viewtopic.php?f=1&t=819

By having these scans performed it serves 2 purposes -
1. Looks for any and all irregular spots
2. And serves as a baseline for future scans

And explain that the cost / benefit weighs heavily in favor of finding tumors , before they become too big to treat at their smallest size .

Our sarcoma is known to generally grow slowly - it’s termed indolent so early detection gives us time to plan surgery and or ablations , as this is been proven time and time again , to be the absolute procedure .