Daniel D in South Korea - Dx 2013

[D.ap]

Daniel
Below was Olga's suggestion

http://www.cureasps.org/forum/viewtopic ... =978#p8212
If local treatments of biggest mets can be performed that creates the least damage ,like Cyroblation,then choose that over surgery.
The lung volumes really need to be preserved first and foremost. This is a life long sarcoma
Hope that helps

Take care
Love
Debbie

[danieldew7]

Thank you for your suggestion, I will ask whether cryoablation is available in this area.
I was scheduled to meet the doctor who is in charge of breast surgery next Tuesday.
I read the legacy? of dr. Littrup, but my financial condition is cannot cover the expenses if I have to have few round trips overseas.

[Olga]

Daniel - can you find out is laser assisted surgery might be avail. in South Korea? It is avail. in Japan.

[danieldew7]

Dear all, here is my latest news.

Situation: 7 visible mets in right and left lungs, with possibility another hundred mets.
The biggest one is about 5.7 mm

Respond:
My oncologist recommend me to see the thoracic and cardiovascular surgery doctor.

My thorax doctor recommend me to see the chemo doctor first since while he could remove the visible tumors easily, there is no guarantee that the rest do not grow. Furthermore he told me it is harder for the body to recover if I do the surgery first before chemo.

My chemo doctor told me to hold and do not take any chemo at this point.
He did not recommend pazopanib since the clinical trial is not showing positive result and no foreign chemo. medicines are showing result as well at this point of time.
He scheduled another CT 3 months later.

[Olga]

Hi Daniel,
all the doctor's responses are correct. Most of our patient's with multiple lung metastases received the same response at some point. Some decided to wait hoping the more effective chemotherapy will be found. Some (like Ivan, Tom, Josh, George, Jussi etc) decided to seek more advanced surgery (laser assisted thoracic resection) in Germany to remove all the visible lung mets to buy a time advantage to be able to wait for the reliable systemic treatment to appear. It is not a cure but a time advantage. The biggest lung mets can be also cryoablated if the laser assisted surgery is not avail. or there is no money to go to Germany, to buy the time also. 6-7 lung mets can be all cryoablated - just take them one by one as they grow. Ivan still had to any systemic treatment during his 12 years with metastatic ASPS, as after the laser assisted surgeries he could have cryo 1-2 treatments every year for the rest of the mets. In your case the size of the lung mets is to small for the cryo yet - the best size is 10 mm, but it is very good for the laser assisted surgery.
It is not rare when we have to act against the advice of the local doctors as we need more specialized treatment/advise. Look outside of your team for the second opinion, or you can just wait for the new systemic treatments to appear, but it might be not soon enough. It is up to you.

[danieldew7]

My last scan is June 5th, and CT scan from January 5th 2017 is as follow:
- the biggest one was grew from 7 mm to 15.9 mm
- the next was 4 mm to 11.7 mm
- the least biggest one is still less than 1 cm
The rest of micro and tiny mets are stay still or negligible.

The onco. recommend to do physical lung surgery via tube (I don't know the exact medical name) for those biggest 3.
He didn't recommend any chemo or biologic therapy at this point.
I will meet the surgery specialist this January 13th to discuss biopsy and surgery date.
Please feel free to drop any comment!

[Olga]

Why would they need a biopsy? The behavior of the nodules (growing) is proving with certainty that these are mets. I would def. not to agree on the biopsy, no need to scar the area before of the minimally invasive surgery, its success improves greatly if the field is clean and not scarred, we have a first hand experience with it - how complicated the scarring that type of surgery.

[danieldew7]

Thx Olga, your opinion is very logical and I will surely point that this week.

[D.ap]

Hi Daniel
It's great to hear from you .
I'm sorry for your tumors growth but am confused to why the doctor is proposing surgery now?
Where are the largest tumors located in your lungs?

[danieldew7]

Dear D.ap,
Thanks for your concern! The reason of waiting up to this point is that the growth until previous scan is still very small and there is no guarantee that there will be no more mets if we remove all of visible mets.
But last week scan result shows that there is 3 mets that grow significantly and the rest is stay the same size by comparing scan result.

[D.ap]

Hi Daniel
This is Debbie
I'm wondering if the tumors are becoming close to a vital organ like the heart ?
How's your breathing ? Your oxygen levels ?
As Olga has suggested previously can cryoblation be performed instead of surgery?
Surgery causes lots of scar tissue and will make it harder to have full use of your lung after wards
Cryoblation will be a better choice and it will be easier to recover from and better for your breathing

[D.ap]

How's your other scans looking ?
Are there any other tumors that you know of?

[danieldew7]

Hello Debbie
My onco. told me that the surgery process is pretty simple since they will not open the chest directly,
only put a pipe through my side.
I will ask for the surgery medical name and suggest cryoablation on the same time.

The 2 reasons for this surgery are those 3 mets are getting bigger at different pace than other mets (relatively same) and
if they keep getting bigger there is probability that they will invasive blood vessel.
Thanks for your suggestion!

[Olga]

Hi Daniel, the name of this surgery is VATS - video assisted thoracic surgery. They make 2 or 3 small cuts to insert the tube and move the tiny camera inside in one and the surgical tool in another. The simplicity of the surgery is based on the location - if the mets are peripheral (easier) or central (complicated or impossible by VATS). My guess is that since the surgeon is saying it is easy, they are not central. VATS could be easy but if there is a complication or unable to locate the met, they convert it to the open surgery. Make sure the surgeon is VERY experienced in this type of surgery.
It makes sense to remove or ablate few mets that grow aggressively when the rest is stable. But the cryoablation is less traumatic than VATS - find out if it is avail. locally, again - from the very experienced cryoablation doc - they are called interventional radiologists,

[danieldew7]

Hi Olga,
It is as you've predicted, due to the location (left, right, inner and outer) and number (20 visible mets),
VATS surgery only able to resect the biggest three,
and the doctor recommends cryoablation sugery.
However, I have to do lung capacity test first next week and the doctor will discuss further with onco. whether:
1) Do the surgery right away, or
2) Chemo first before surgery.