Daniel D in South Korea - Dx 2013

[danieldew7]

Hi,

I am 27 years old male from Indonesia and currently live in South Korea, Seoul.
I had a lump on my right thigh that steadily grew bigger since end of 2013, and diagnosed as ASPS stage 2 on July 2014.
Furthermore, the doctor in Seoul University Hospital found 3 small nodules in my left lung but still not sure what are they until now (Nov 27)
The surgery is at the end of July 2014, and the last MRI was on the last week of Oct., the result is my thigh is clear from any met and the nodules in my lung are still there, still on same size and there were no similar nodule grow anywhere else.
I will have next MRI scan on Feb 2015.
Nice to meet you all!

Warm regards,

Daniel D.

[Olga]

Hi Daniel,
welcome to the board. What size was your primary? It is good to hear that it was completely and successfully resected. Was the lungs CT scan done with the contrast or not. You should also have a staging bone and if possible brain scan, for a baseline.

[danieldew7]

Hi Olga,
My primary was around 5 cm in diameter, all of 3 nodules in my left lungs are very small- the doctor noticed them because they do not have any connections to other part of the lungs, unlike the other spots that connects with each other.
Any idea what are they?
Here is the picture, but since this is only trial account they will last only for 30 days.
Does this forum have permanent account? I could upload them over there if you have any.
https://imageshack.us/i/pblhlfiOj
https://imageshack.us/i/f0FE8dOCj
They were done by different hospital since ASPS is not well known in South Korea.
For the very first time it was diagnoses as a lipoma, but the size grew steadily so I went to biggest hospital's oncology department to do the biopsy and BANG! cancer
I already did the PET-MRI and there was no mets in my brain on July, but I have not done bone staging yet. Do you recommend it? I could ask the hospital.
Thanks!

[Olga]

Hi Daniel,
The nodules in the lungs might be small lung metastases - their probability is very high for the ASPS patients - but it can only be verified based on their behavior, you will have to watch them with the CT scans with the contrast comparing the scans with 5-6 months or even a year interval in between to detect any growth as they are slow growing and comparing scans with 3-4 months interval in between often result in assumption that they do not grow when in reality they do grow but very slow. I am not that skilled in reading the CTs and we do not keep the patients's scans here, as there is really no point in it - if they grow they will be diagnosed eventually by your local drs. When they are super small there is nothing really can be done even if they are lung mets so you will have to wait for now. Try to live your normal life as ASPS is a slow growing sarcoma and needs to be surveyed all you life, and often can be managed effectively if the metastases found early.
Yes, I would suggest to have a bone scan as a part of the proper staging. PET scan is very low sensitivity scan for ASPS - since it grows slowly it attracts less glucose than the other cancers and less tracers accumulates in the tumors. The metastases smaller than 20 mm are often left undetected by the PET in ASPS. I am not that familiar with the PET/MRI combo, do you know what is the MRI resolution for that unit, i.e. what is the smallest size of the tumor that can be detected. Is it a full body MRI? How do the lung nodules look like on it, were they detected?

[danieldew7]

Dear all,

I just went back from hospital yesterday and the result of MRI on my right thigh and CT scan of my lungs are clear.
By clear it means all 3 of the small nodules in my lungs are stay there, do not grow nor decrease in size and do not spread.
The doctor still unsure about what are they, he said it could be an inflammation trace.
My next scan is 3 months from now. I will keep the update.

FYI, after the surgery I change my menu with more fresh vegetables and antioxidant supplement.
The intake of red meat and processed sweetener are reduced significantly as well.

[Olga]

Thank you for an update, looks good.
Was the CT scan done with the contrast? What was the scan's resolution/slice - 2 or 5 mm? ASPS is a low growing tumor and 3-4 month interval is usually to short to notice changes in the lung mets. We had numerous scans when drs were reporting that my son's nodules were stable but then when compared with the scan done a year ago, the growth was evident. I suggest to have the next scan in few month - may be better 4 instead of 3 to not overuse CT scanning - and to compare it to the very first lungs CT scan you had.

[danieldew7]

Hi Olga, all 3 of them are less than 3 mm, that is why the doctor cannot conclude what are they.
OK, I'll ask them if I could do the 4 months interval instead of 3.
FYI, Seoul University hospital have this kind of policy where asps patient (they have around 4~5 per year) should undergo MRI+CT scan every 3 months for the first year, 4 months for the second year, 6 months for the third year, and annual scan after that.
Thanks!

[D.ap]

Daniel,

Thanks for the update. It sounds like you are doing a great job in taking care of yourself.
Keep it up.

Sincerely
The Josh P family

Ps
Daniel
Where are the health professionals getting this from?
Very interesting

FYI, Seoul University hospital have this kind of policy where asps patient (they have around 4~5 per year) should undergo MRI+CT scan every 3 months for the first year, 4 months for the second year, 6 months for the third year, and annual scan after that.
Thanks!

[Olga]

Daniel, I will now move this topic to the Personal Stories and Updates forum.

[danieldew7]

Daniel,

Where are the health professionals getting this from?
Very interesting

FYI, Seoul University hospital have this kind of policy where asps patient (they have around 4~5 per year) should undergo MRI+CT scan every 3 months for the first year, 4 months for the second year, 6 months for the third year, and annual scan after that.
Thanks!

Hi D.ap,
That is the local regulation, I do not know the source though.

I just finished my 3rd MRI and CT scan for upper torso and my right calf where the asps were resected.
Unfortunately, the result shows that one of the small nodule in my lung is getting bigger now, and the doctor still does not get any idea what is that.
However, he suggested two things:
1) Wait a little bit more
2) Do the local surgery (Quick and recovery period is about 5 days)

I am still discussing the option with my family.

[Olga]

Hi Daniel,
thank you for an update.
As I understand, the drs are are talking about exploratory VATS surgery - to remove one or few suspicious nodules for the testing? Since you have more than one nodule growing (based on a screen copy I am reading) and ASPS is almost always metastasize to the lungs first, what is the point of checking. It just adds you some scarring even if not that much, but you have to start to take care of your lungs health. There are places in the world where the lung surgery for the multiple small lung metastases is done using laser tool. We went to Germany to have Ivan's multiple small lung mets removed by Dr.Rolle 10 years ago. It did not cure him but did prolong his life better than any systemic treatment other our patients tried at that time, the surgery were very painful to have but he recovered well and is having a good quality of life now. This window of opportunity is limited by the growth of the mets, it can only be done when they are small. The information about this type of surgery is located at the Lung metastases forum of this board. Dr.Rolle needs to see the CT scan to say if he can do it, also Dr.Rolle is due to retire very soon.
The other thing to try is the systemic treatment option. In our community we had rare cases of the success with the traditional systemic treatment combined with the lung mets resection - when all visible lung mets were resected and then after the micromets recurred the systemic treatment was done and people were basically cured - single cases with the use either of MAID regimen, gemcitabine weekly or vincristine+celecoxib. We also have a single case of the complete response to cediranib (only avail. on a clinical trial as of now) and multiple cases of the partial response to another TKI drugs - pazopanib, sunitinib. The duration of the response is usually about 1 year and after that the resistance develops and the mets start to grow again.
I also see they mention SABR on the screen shot of the report. We call it SBRT here (if this is the same?). It means that they can do a radiosurgery on the faster growing metastases. It is also a valid option but there is a radiation damage to the lungs - radiation fibrosis - that changes the lungs tissue into the scar-like tissue. For most people this danger is low but some people develop it and it is impossible to say who is in this group before it is done and the time passes. The can only take care of the limited number of the metastases this way. Other option of the local treatment of the single mets is cryoablation, we use it for Ivan's single number of mets during the last 5 years. I do not know if the good level dr is avail. in your area.
It is a hard choice and most of ASPS patients have to make it at some point.

[danieldew7]

Hi Olga,
Thank you for your prompt reply. As the motto of this forum, I just shared my personal experience and any update just in case someone out there is experiencing the same thing.
My local doctors is discussing this matter and I have to visit them again next Tuesday- to decide the future treatment.
Next week I will take reference of your opinion (cyroablation, laser surgery and systemic treatment) and noted all of the chemotherapy drugs name.
I will keep the update next week!

[danieldew7]

Recent update,
Yesterday my doctor found 7 small (the biggest one is 6 mm) metastases in my lungs (6 in left and 1 in right lung) but he told me to wait another 3 months before taking any decision.
What my doctor afraid of is he could do the surgery next week, but if after that there is more metastases 3 months later, the surgery will be for nothing.

He also do not recommend chemotherapy as it is ineffective against ASPS.
Local doctor cannot do laser surgery, and he only suggests surgery or radiation option.

[MartinBube]

Daniel, I think you should search the option to do a type of surgery as Dr. Rolle does in Germany. I know that there are people here that did repetitive surgeries since the method is not destroying too much lung tissue. I know that Germany is too far from where you live but maybe the same method is available there also?

The logic of your doctor I believe is not right since even after 3 months when you will do a surgery afterwards there is no guarantee that something new will not come out and you have already missed 3 months

[Olga]

When Ivan was about to have his first lung surgery with Dr.Rolle, we had all the local discussions as well and they actually refused to perform the surgery as the mets were spread in different segments of lungs so they would remove to much lung tissue. Dr.Rolle technique allowed him to perform the surgery by he too told us to wait for awhile and we kept sending him the scans till he said it is the time to have the surgery. I think it was more than 8 months in between the mets first found and the first surgery. In that time we had few scan and every time more mets were found .But Ivan lung mets were slow growing so we could afford the wait. I think that one wait till the next scan is Ok as it gives you an idea re. Speed of growth and if there are more mets growing from the dormant cells there. In s one very rare cases the number of lung mets is small and can be done locally but more often it is not possible. We had to travel to Dr. Rolle 4 times, other people only needed 2 times. It wa difficult and expensive but there is no other choices as of now. Actually our insurance paid for the first two surgeries, may be you need to talk to them. The cost of the surgery in Germany is very low comparing to other developed countries.