Martin from Macedonia - Dx Jan 2015

[Olga]

Everything about ASPS is traumatic. Any cancer diagnosis and treatment are traumatic. But I have to say that ASPS has its advantage, as it usually gives us a time to find the tool to destroy it, and in your case it grows slowly and it is a huge advantage.
Your case looks to be very different from Ivan's. He had very numerous lung mets, so cryoablation was not feasible to deal with all of them. If they are all there is, it might be possible to cryoablate all of them. But it is also probable that there are other small lung mets in your case as well that are not visible yet.
Have you asked the patient's coordinator contact info in Coswig? To get you a quote for how much this VATS surgery could cost to you?

[MartinBube]

Dr. Drewes has informed me yesterday that one side of the lungs costs almost 20k €.

Yes I know that there can be other not visible mets and that is one of my questions when we talk with Dr. Drewes. Should we do it right now. Should we wait 3 months and scan again in case something pops out.

On the other side can the bigger mets seed more cancer cels in the blood stream etc…

[Olga]

Is this the cost for the video-assisted laser-assisted metastasectomy that he proposes now, to remove one met?

[MartinBube]

no, this is for a complete surgery of one side of the lungs after the metastasectomy.

we have agreed to meet online to discuss as I have few questions like:

- after the metasectomy how soon can I go back home do I need someone with me
- Why metasectomy first when ASPS is progressing to lung and almost 100% it is asps and how much is the cost for this only
- if it is ASPS after metasectomy, should we wait more for any other changes and than operate so we take out more with one shot.

Yesterday I sent my results to a local thoraic surgeon who consulted another oncologist here who has heard of procedures like this but says here are not available and looked at my results as they are available on the State Clinic and they say that I should wait more, do another scan in 6 months but at the moment I think waiting is not the best option.

both of them are not sure what the nodules are.

Waiting on info also about Keytruda.

[Olga]

to add more questions for Dr.Drewes:
1. If he is planning to remove this one growing nodule during exploratory VATS surgery, using laser, does he expect that its histological structure will be preserved well enough after the laser? Usually it burns the tissue to a point it evaporates.
2. Are there any non-growing nodules in proximity to this growing one that could be removed during the same exploratory VATS surgery to figure out what they are?
I have to comment on the cost. About 20 thousand euro for the surgery is cheap. It is easily *10 times more in UK and US. Especially taking into consideration the level of surgery and care they provide in Coswig. In US there are like 1 day in ICU and few days at the hospital that are incl. in the quoted cost. In Coswig it was few days at the ICU and up to 10-14 days at the hospital with the rehab incl.
The cryoablation was about 10-15 thousands in USD, but I am not sure lately

[MartinBube]

Thank you Olga. I will add these also.

Before making a final decision I would like to speak with an experienced oncologist in Sarcoma especially if they know asps or had a patient. What does he think especially if I should wait some time to see if something new pops up or I must do this as fast as I can as these nodules can spread more asps. I feel that I’m doing all this by my self with no professional opinion

Regarding the cost I will handle for now somehow but after this of anything else comes up very soon I will be financially very weak. That’s why I want to make sure I have the right decision although there is not one right decision here :)

[Olga]

We usually evaluate multiple options with Ivan and the choice is very stressful because there is no real answer to many questions. Dr.Rolle told to us in the beginning that this is a chess game, you need to think very hard over the next move and how it affects things down the road and how not to miss the opportunities. In absence of statistics, it is still very beneficial to have a good oncologist, sarcoma or general. At least it is a way to clarify the situation with Keytruda, cryoablation etc availability in the country.
One more thing to consider. You now have a documented progression in a single metastasis. You need to find out if by removing it, there is a problem with trying to get Keytruda, as there is going to be no index metastasis to watch for response, nothing to evaluate. On the other hand you could just cryoablate it and forget all of this for few years, if you get lucky. Any met that is growing has to be destroyed as soon as possible as it can seed.

[MartinBube]

I think I'm very close to the option that I do this one met for begging at Coswing with Dr. Drewes, Cryo or his method not sure which is best but it will be a start and at least I know that he has experience and I can do it fast probably.

I just just had a call with a close friend that found for me the importer for Keytruda for Macedonia and tomorrow we agreed to talk together so he can explain what is the way to get treated if needed. So i will talk with him tomorrow and at least I know more details and at least it is available localy.

[MartinBube]

Today I had video call with Dr Drewes. He has explained to me the complete procedure even more details that I need to know. His plan is to do complete surgery on the left side where he sees the growing nodule and do the analysis afterward. He said that he would not burn but cut around with laser so we can remove this nodule and save it for histological analysis. the other 2 on the left side will be removed also.
If asps is confirmed he would after recovery do the right side also, it not he will wait. He believes that with the current situation this is a good period to operate. Next week I have to meet new oncologist and hear his opinion. I also arranged an online call with Prof. Thomas Borowitcz from Vienna who is specialist in Soft Tissue Sarcoma to discuss the current situation, after all this I will decide how to move forward.

Regarding Keytruda, yet is is available here and there is a way how to apply to get it. I will have a meeting for this here with a oncologist that has already applied to other patients but with Melanoma not asps. If anyone can let me know where can I find any publications regarding Keytruda and asps so I can show him if he is not already aware.

[Olga]

https://cureasps.org/forum/viewtopic.ph ... 514#p11514
but it comes at the cost of the significant toxicity for some ppl such as autoimmune effects.
But surgery also damages lungs. If you have a surgery first, it is unlikely they will give you Keytruda before there is any progression as there is no index met to watch. On the other hand the response to Keytruda might be not permanent.

[MartinBube]

If I have the surgery definitely i will hold on till something new comes up, i will mot even seek Keytruda afterwards.

Also with the current situation with one growing nodule it is really hard that I will be able to enroll for Keytruda.

I will discuss with more experienced oncologist and than I will decide. Somehow I have the feeling that oncologist will advise to wait and not do surgery now for 5 nodules. It’s difficult for me to accept this but on the other hand I’m not a doctor. And the surgery is serious operation.

I will see what inputs I will get in the next 2 weeks.

[Olga]

What about cryo dr? Try to find a good one in the area, skilled in lung ablations specifically. Just to have one more opinion on hands. Basically you need to find out if this growing met location would allow to ablate it easily. I would not leave a growing met untreated, regardless of what oncologists would say. We had to make our own decisions in the past numerous times, not because we do not value drs opinion but just because the oncologists, surgeons and interventional radiologists have different opinions and options, and none of them are above the others or have more ASPS specific experience as it is rare. Also sometimes drs base their advice on a risk/benefit ratio but for the very experienced dr performing the surgery or ablation, risk is lower than other drs can imagine. Ivan had about 20 cryoablations and some of them were in locations only Dr.Littrup could do, and our local cryo dr told us he has no problem in saying that it can be safe if Dr.Littrup does it and not if it is done here in Vancouver by him.

[MartinBube]

Yes I’m definitely thinking about cryo lately. I might have more details this week regarding cryo in the region. If not Saphir in Germany is an option.

I was wondering if I do cryo is it possible later if meeded to do the laser surgery ?

[Olga]

Saphir in Germany, they do a radiosurgery, high end, dedicated. They do not do cryo.
One cryoablation should not complicate the following surgery if needed, but with the cryoablation you should be very careful to choose the right doctor. One of the most dangerous complications of the cryo is pneumothorax when the lung deflates and collapses. To fix that sometimes the open surgery is needed. That will complicate the open surgery if needed in the future. The main question to ask the interventional radiologist is how many successful lung tumors cryoablation has he done in his practice. It has to be more than a 100 at least.

[MartinBube]

Thank you olga, I will have that in mind, however Dr. Drewes has said that colapse of the lung is also possible complication with his procedure also so I guess this is always one of the risk factors with lung surgeries, I will definitely try to find experienced doctor.

I will write to Dr. Vogl again to inform that I would not like to do the chemo perfusion but check the possibility for cryo. He is doing Cryo Right?

My MRI Head result came yesterday clear, thank God.