Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan was found to have a suspected pancreatic metastasis in July 2016, by MRI with the contrast performed as a part of the surveillance of this area post the cryoablation a year ago for the adrenal met, the new area is located next to it. Ivan started to get abdominal MRI in the adrenal area since his first adrenal met was discovered, and he had few of them since then to watch post ablation progress of the 3 adrenal mets - 2 on one side consecutively with the year interval and 1 on the other side later. So they basically have few years of the MRI but they want some more remote baseline scans to use so they only have CT scans ways back, so this is why they want a CT scan of that area. This area gets caught in some of the chest CT at the bottom so my guess is they found some old scan that had this area shown more clearly and now will have a CT of that particular area only to compare.

The additional pancreatic area CT scan with the contrast is arranged to try to define the location. After the scans is done, local top abdominal surgeon is going to review them re. possible surgical resection. The scans are also going to be sent to Dr.Littrup re. possible cryoablation and other doctors that we are going to be consulting with, I need to find the heroes in this field first. Pancreas is a very bad area as the treatment options are limited and there is significant morbidity (side effects) from all the local treatments as this is a very fragile and sensitive organ. Some of the side effects are life threatening and many of them affects the quality of life, so the choice has to be made very carefully.
The size is about 25 mm, it is located at the back of pancreas.

Thinking of you always Ivan. Tom and I send our love to you and your Mom.

Dear Ivan and Olga, I am so sorry to hear about the concerning abdominal MRI scan results showing a suspicious 2.5 Cm. pancreatic lesion. I deeply share your frustration that it has apparently been there for awhile but was inexplicably/irresponsibly/inexcusably never noticed/reported by the radiologist which seems to happen MUCH too often as we heartbreakingly learned 8 years ago when Brittany's very large spinal met was unreported by her radiologist during a 6 month time period that included 2 previous scans and was not diagnosed until it devastatingly grew so large that it became symptomatic!! My greatest Hope is that the suspected pancreatic met proves to be just a benign easily treated lesion, but if it is unfortunately determined to be an ASPS met, I Hope that it is located in a resectable or otherwise treatable area of the pancreas unlike Brittany's pancreatic met which was devastatingly unresectable and untreatable because it was in the head of her pancreas. It was because of Brittany's unresectable/untreatable pancreatic met that we pursued systemic treatment with Cediranib which VERY thankfully ultimately apparently completely destroyed the met with no current remaining scan visible evidence of it. Hopefully systemic treatment will not be necessary to treat/shrink//destroy your suspected pancreatic met dear Ivan, but if it is, at least you have another promising treatment option that you know has been successful for Brittany. I will be anxiously awaiting your next update and holding you very close in my heart and my most caring thoughts. With shared concern, deepest caring, healing wishes, love, and continued Hope, Bonni in Edmonton nervously awaiting Brittany's today's 4 month Cediranib Trial chest/abdominal/pelvic scan results which we will receive tomorrow

Just to give an interim update on what we are doing to deal with the newly found panc area met.
For starters we refined our understanding of the pancreas anatomic structure, function and the location of the met (it was hard). It is still not possible to say for sure if it is just in a close contact with the pancreas but arising in the area or arising FROM the outer layer of the pancreas. But we now know, that it is located in the central section of pancreas (there is a head, neck, center and tail parts in general) closer to the tail, posterior (at the back of it) which is not the worst location for the resection.
Started to look for the removal/local destruction option with the preservation of pancreas/spleen (it is attached to the tail and most of the surgeries incl. its removal just for the company). We want to try to keep both as the side effects of loosing them are pretty bad.
Then I have to find the places with the big volumes of pancreas resections/ablation, and read 500+ articles re. who does what with what result. Nothing that is less 100 patient cases is of interest as it is a learning stage.
1. Contacted about 5 top panc. surgeons around the globe to find out if this met could be resected with the minimal morbidity - pancreas and spleen preservation is a must, so we are hoping for the enucleation (this spot only with the min margins around) or some minimal resection. Also looking for the minimally invasive surgery to avoid the big open abdominal one. Apparently pancreas is one of the worst organs to have a surgery on, very fragile and delicate with lots of complications if it cut. Got an answer from all of them it can be done with diff. levels of trauma, cost for the self paying international patient in US astronomical (up to 150k USD), in Germany it is less (50-60K Euro at the European pancreas center). Free at home and the surgeon (Dr.Charles Scudamore) is very, very good, but it is a big open surgery.
2. Contacted 4 cryo ablation docs. Two of them said no (Dr.Littrup and Dr.Aoun), Chinese surgeon said yes but with the grea help of our member (thank you Lynette!) we managed to find out that their yes meant they are willing to do the cryo but are only hoping to ablate 80% providing some cytoreduction as a temporary help. Not what we a re hoping for. The 4th cryo doc from Austria said yes, but we are skeptical as there seems to be no way to do it as Dr.Littrup explained.
3. Contacted the best IRE (irreversible electroporation) doc in US - he is a panc surgeon and an interventional radiologist at once, Dr.Martin, very experienced which is a rarity as this type of ablation is just starting. He accepted Ivan but the cost (150K) and the way it is done - during the open surgery, with the high complications rate - is a minus. Other surgeons said it just does not make sense to use IRE where it looks resectable.
4. Contacted Dr.Walz from Germany - he is a very experienced VATS (min invasive surgery done with the camera trough 3 small incisions) surgeon who developed a novel approach from the back to the tumors located in the area of the adrenals/back of pancreas, got very extensive experience in using this way and teaches surgeons from other countries, I have been in the contact with him before when we were looking to deal with the adrenal mets. He accepted Ivan back then but we went with Dr.Littrup as an even less traumatic option 2 and 1 year ago. This time Dr.Walz is ALSO accepting Ivan saying that he is pretty confident that 99% in favor he can do it from the back approach easier and much less traumatic than with the open surgery. the cost is very reasonable, about 12 K Euro if it goes easy and 20K Euro if it more complicated with 2 weeks stay.
So at the moment we have two favorites - Dr.Scudamore (big surgery and 3 month wait time, but at home which is great in case of the complications, also no cost for us - covered by the provincial insurance) and Dr.Walz. (minimally invasive, experienced but need to fly back from Germany after the surgery - always a risk that some shit happens during the flight or at the airport, also when there are complications and you are at home with the surgery done somewhere things can get tricky as no one feels responsible).
So we are in the process. Dr.Littrup was a great help in reading the scans and explaining what the hell is going on there as the abdominal scanning is so confusing and none of it - CT with the contrasts, MRI with the contrasts is not easy and very confusing for everyone.

Ivan, So sorry to hear about the pancreas met I hope u are able to get the proper treatment/surgery..

Olga,
Thanks for sharing the course. "read 500+ articles", this is really impressive.
The 2 favorites is good.

Hello Olga and Ivan

At what rate are tumors progressing ?

You have time to proceed with less invasive surgery?

The less invasive would serve you better in my opinion

1) to be able to view the tumor laparoscopicly
2) be able to have less damage to muscle ect but remove if able to resect with good margins and able to preserve functions

Our hearts are with you all.

Love
Debbie and family

Lynette - "read 500+ articles" is actually an overstatement, its more like "looked trough 500+ abstracts on the Pubmed + read 50+ articles". Its what you need to do to figure out the major players in the field (after figuring out what the field is - what can be done at all).
deb - it looks like this met (or two together) were growing there for quite awhile, this area is so stuffed with all the different organs and lymph nodes and glands and vessels that it is really hard to see if something is not right. In retrospective it can be seen on the scans before, I am not sure for how long its been there.

Olga you have done very detailed research, I really admire that.

I hope that you get the right people.

From my perspective having the surgery at your hometown looks best option (provided that the surgeon is one of the best) for all the followups later he is there at your disposal.

Probably Germany is not a bad option also. The cost of the US is just too high and I believe that the other options offer pretty much the same

Dear Olga,
I have been away from the computer for the past several weeks with all of the preparations, company, and activities of the 10th Annual Celebration of our beloved son Tate's Life, so am very sorry to be so slow in responding to your very thoughtful and detailed update on the current status of the treatment options of dear Ivan's recently diagnosed pancreatic area met. I am so sorry for the difficult decisions that you are facing, but am grateful that the met appears to be more resectably located in the central section of the pancreas and that there seem to be at least a couple of viable treatment options. As always, I am deeply humbled by your extensive research and knowledge, your undeterred determination, and your aggressively pro-active approach in reaching out to doctors throughout the world in your search for the best, least traumatic and damaging, and most promising treatment for dear Ivan. As you know, Brittany's pancreatic met was located in the head of her pancreas where it was devastatingly considered unresectable and untreatable with ablation or radiosurgery which is why we were forced to try to find a systemic treatment which could shrink/destroy the tumor, which Cediranib VERY thankfully ultimately succeeded in doing. Prior to beginning systemic treatment with Cediranib, we had done extensive research to try to find a viable treatment for the pancreatic head tumor, and we did find one case of a successful treatment outcome with Cyberknife treatment for a tumor in the head of the pancreas, but despite a very well documented appeal to the insurance company for coverage of the prohibitively expensive procedure, Cyberknife treatment was denied by the insurance company and the Seattle Cyberknife specialist infuriatingly refused to support our appeal after telling us that she thought it was a viable treatment option for Brittany!! In our research we found that there was a VERY major surgery which could be done, but it was a very dangerous procedure with extremely debilitating post-op trauma and side effects which we ultimately decided against pursuing. Based on your description of your two favorite treatment options at this time, I personally think that the minimally invasive VATS procedure with Dr. Walz in Germany sounds preferential to a three month wait time open major surgery with Dr. Scudamore close to Home in Vancouver, but I understand that there are financial, travel, post-surgery complications and care considerations and issues that you must weigh prior to making your decision. I know too, that ultimately it must be Ivan's decision since he is an independent young adult. Whatever treatment decision is made, know that my most caring thoughts, my very best wishes, my most positive thoughts, and my greatest Hope are with dear Ivan, you, and your family, and that I will be anxiously awaiting your next update as your time and the situation allow. Take care dear Olga.
With special hugs, deepest caring, healing wishes for dear Ivan, much love, and continued Hope,
Bonni

Surprise. Our local surgeon has ended by refusing to do a surgery - they had a meeting of the abdominal surgeons to review unusual cases last week and decided not to recommend the surgery. After he was very positive he is going to do it - when we met. I feel kind of upset about it (even though we were already in the last stages of planning to fly to Germany have a surgery with Dr.Walz - we were not planning to have a surgery here in Vancouver anyways) but it just does not feel right. It sucks. I am thinking of other people in this situation with no other options (money, ability to travel, understanding that a "No" here does not mean there is no doctor somewhere who is pretty much positive he can do it). Dr.Walz sounds very positive (as were other few surgeons in other places), so we are leaving on Tuesday, arriving on Wednesday and Ivan is hopefully going to have this met removed till the end of the next week.
I was reading about Dr.Walz and found that most of the abdominal surgeons who can do this type of surgery (retroperitoneoscopic - minimally invasive from the back) - learned from him - even at the most expensive places like MD Anderson CC, Mayo, Vanderbilt surgeons were trained by Dr.Walz, so I am very hopeful.

Wow Olga
Ivan's track record , at lack of better medical description on my part, sure should of been in my eyes a go for the surgery . Strong, tumor load under control other than that dang pancreatic tumor

However I'm really glad you had the other trip planned and you are moving forward !
My heart and love are with Ivan and yourselves , today and always.
The doctor sure sounds to be a wonderfully qualified person for this situation .

Love
Debbie and family

Dear Olga,
Thank you for your update. I share your great frustration with the Vancouver doctors reversing their initial optimistic opinion and willingness to perform Ivan's pancreatic met area surgery, but am so deeply grateful that your extensive pro-active research led you to other (better) viable options and that you are proceeding with obtaining the less invasive procedure from the highly experienced Dr. Walz, which in my personal opinion, seems to be the best option. I am also very grateful for and encouraged by Dr. Walz's extensive experience and expertise with this procedure. You and your determined aggressive pro-active approach are a source of great inspiration and guidance to those who are told by their doctors that there are no other treatment options available, as was our case when Brittany developed her unresectable and allegedly "untreatable" met in the head of her pancreas and we refused to accept that opinion and instead sought out and obtained systemic treatment with Cediranib which VERY thankfully ultimately destroyed the "untreatable" pancreatic met and most certainly saved Brittany's precious young Life despite her Seattle oncologists dismal prognosis when the pancreatic met was diagnosed seven+ years ago. My and my family's very best wishes, most positive thoughts, and greatest Hope will be traveling with you and Ivan to Germany. We will be anxiously waiting to hear the outcome of the surgery which will Hopefully be VERY successful in completely removing the met with minimal impact to the pancreas and adjacent organs, and a speedy and full recovery for dear Ivan.
Traveling along with you with safe and good travel best wishes, special caring thoughts, much love, and continued Hope,
Bonni

Hi Olga,
I understand your frustration when doctor changed their mind and reject the surgery. How hopeless it would be for a patient and the family if they don't have other options...
Fortunately you find a better option with Dr. Walz and get the appointment so soon. Wish Ivan a successful surgery and speedy recovery!
Travel safely,
Lynette

Safe and good Germany bound travels today dear Olga and Ivan with my most caring thoughts, very best wishes, all my love, and greatest Hope for a VERY successful outcome to this week's pancreatic met surgery flying with you, Bonni