LEE From China - Dx Aug 2014

[ssnc]

Hello, my name is Lee, I am from China, 31-year-old.

In a trauma examination in August 2014,It was found that there is a 2 cm mass at cervical . At that time all the doctors said it was a cyst, but the pathological examination after surgery showed this was a ASPS. Soon after the first surgery, I took the womb wide excision. Then I take review every three months. However, liver pieces shadow were found at the review in March this year of 2015, while the rest of the lungs and good. After two weeks of consultation and MRI + DWI (diffusion weighted imaging) testing , it was found that two or four 3-7mm of metastases (with two small dispute )were at the rear of right hepatic near the top of diaphragm. These tumors are so special with no blood supply show, that most doctors think it is a rare vascular tumor. The review in November 2014 shows two of the larger already exists, while the doctor did not describe it in the report. After comparison it was found that the two large tumors did not grow up in this four months. Now doctors think they are too small and the location of them is not good so they can not be surgery or RFA.

I do not know how to deal with this case. Although I have purchased Pazopanib, too many doctors advised me not to have it now. But the ASPS on my liver make me feel very uneasy. I want to know what I should do next?

[Olga]

Hi Lee,
welcome to the board.
Your situation is unusual as we do not have patients with liver metastases when there are no lung metastases present - lung metastases usually are found first and other locations are found later. Do you know what was the lungs CT scan resolution? Did you also have a bone scan, an abdominal CT scan and a brain MRI scan? You should know that PET scan is not good for ASPS.
I would agree with your doctor that Pazopanib should not be started to early as this drug is usually only able to work temporarily until the resistance develops and this option should be kept for the later stages of the disease. The treatment options in the early stages are usually local - ablations or surgeries. When the location is not good for surgery or RFA, it is often good for the cryoablation as cryo can be safely done close to the heart/lungs/vessels. Consult where to find the most experienced cryoablation dr. Good luck.

[Bonni Hess]

Dear Lee,
I am so very sorry for your ASPS diagnosis, but I am glad that you found your way to the CureASPS web site and that you have reached out for shared information and support from those of us in the ASPS Community. I join Olga in welcoming you to the Discussion Board, and I agree with all of the information and advice that she has provided. Has a definitive ASPS diagnosis been made of the suspected liver mets? We have a couple of patients on this Board with liver lesions which have remained stable in size for a sustained amount of time and it is now thought that they are probably not ASPS mets, but rather a benign liver hemagioma. Unfortunately, the only definitive way to determine if the lesions are ASPS mets or a benign lesion is resection (surgical removal) or biopsy but neither of these procedures are probably possible since you said resection is not an option, and because there is a possible risk that a liver biopsy could seed the tumor and spread the disease if it is ASPS. If the doctors decide that the lesions are most likely ASPS mets, Cryoablation that Olga suggested might be your best treatment option. It is very unusual for ASPS to metastasize to other parts of the body before it metastasizes to the lungs. Since the scans did not show any lung mets, this may be another indicator that your liver lesions are not ASPS. As Olga told you, if you have not already had an abdominal CT or MRI, a brain MRI, and a full body bone scan it will be very important to do so sometime soon because if there are any mets in those areas of your body they need to be found at the smallest possible size to ensure the best chance of a successful resection or treatment. Please know that you are not alone in this difficult battle Lee, and that those of us on this Board are here to share anecdotal and researched treatment information, input and advice, and strengthening support and encouragement with you. Stay strong and let Hope lead you through each day.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of now 32 year old Brittany diagnosed thirteen and a half years ago at age 19

[MartinBube]

Dear LEE

First of all welcome to the Board, my name is Martin. Basically I'm in a similar situation as you are. Had a 3cm mass removed in January which came out to be ASPS another surgery after. On the Scans my Lungs were clear on CT but they noticed some lesions on the liver.

I did an MRI with contrast and according few doctors that I consulted since they do not show any colorization and since I do not have anything on the lungs it is very unlikely to be ASPS mets. However as Bonni says the only 100% sure way to know is with surgical removal. In consultation with few oncologist it was also confirmed that it is very unlikely to have mets on other places first before the lungs.

I strongly suggest if you have not already done all the remaining scans that Olga suggest.

You had a very small size tumor removed and I hope you will stay NED from this awful disease.

martin

[ssnc]

HI my friends

I had done a 5mm lung CT and abdomen, pelvis, brain, spine , femoral also had MRI at the same time, without any abnormalities found. The doctor also felt unusual which may have a certain relationship with my primary position in the internal organs. Frozen is indeed a good choice, but there is no such treatment at the city I live. My insurance limits me to go to other cities for treatment. It is really frustrating.
Do we have a friend who has done transcatheter arterial chemoembolization? (liver tumors killed by Iodipin). Some doctor recommended me to do so.
In addition doctor said that RFA may stimulate other tiny tumor undetected by MR growing outbreak ,which makes me a bit overwhelmed

I hope everyone here can have good luck!

[D.ap]

Hello Lee

My name is Debbie and our son , Joshua was diagnosed back in late 2012 with ASPS
I wanted to welcome you to the group.

You were asking about the chemical treatment of the liver mets and I thought that I would link you to Lynette and Jorge who are in China and have been fighting ASPS since 2007.

Also they found ASPS Jorge's kidney just last year on it appears they had a source to cryoblate?

Anyway maybe you could PM them from the link I am posting to talk about your procedure if you go that direction
I however agree with Olga and find it hard to believe they asps would show up in your liver before your lungs?

Blood supply can look like a cancer when it simply in benign
What does your on oncologist say? Have they seen an ASPS patient before?

Ask a lot of questions .

Here begins Lynettes discussion on kidney tumors that were discovered

http://www.cureasps.org/forum/viewtopic ... =180#p6992

Till next time
Love
Debbie

[Olga]

If the cryo treatment is not avail. in your city, may be you can get referral to a bigger one where it is available? It takes time and effort everywhere to insist to have the best treatment, not only in China, but with ASPS being very rare disease we have to be our own advocates. You should first find the most experienced cryo doctors in China, then get a consultation from them that cryo would be the best solution in your case.
I would not expect that transcatheter arterial chemoembolization could permanently destroy the liver mets.
5 mm resolution is to high for ASPS lung mets, they can be at 2-3 mm size for months.

[D.ap]

Hello, my name is Lee, I am from China, 31-year-old.

In a trauma examination in August 2014,It was found that there is a 2 cm mass at cervical . At that time all the doctors said it was a cyst, but the pathological examination after surgery showed this was a ASPS. Soon after the first surgery, I took the womb wide excision. Then I take review every three months. However, liver pieces shadow were found at the review in March this year of 2015, while the rest of the lungs and good. After two weeks of consultation and MRI + DWI (diffusion weighted imaging) testing , it was found that two or four 3-7mm of metastases (with two small dispute )were at the rear of right hepatic near the top of diaphragm. These tumors are so special with no blood supply show, that most doctors think it is a rare vascular tumor. The review in November 2014 shows two of the larger already exists, while the doctor did not describe it in the report. After comparison it was found that the two large tumors did not grow up in this four months. Now doctors think they are too small and the location of them is not good so they can not be surgery or RFA.

I do not know how to deal with this case. Although I have purchased Pazopanib, too many doctors advised me not to have it now. But the ASPS on my liver make me feel very uneasy. I want to know what I should

do next?

Lee
Found a paper on liver tumors that traveled from a leg primary tumor to liver but we suspect the patient had lung tumors that were not detectable.

You can read of this case of 2010 in Nigeria

http://www.cureasps.org/forum/viewtopic.php?f=2&t=1049
Love
Debbie

[Jorge]

Hi Lee,
I'm glad you finally post here. It's a very good way to get very professional and experienced opinion for treating ASPS.
Congradulations to you the 3cm suspicious shadow is excluded from ASPS as you said the mets are 3-7mm.


Debbie,
Lee and I are friend and we are contacting frequently.
We both understand Cryoablation is the best choice on her case. But her insurance is very limited that she can't get most treatment including cryoablation outside the city using her insurance. If she really needs to go out for the treatment, she has to pay by herself. So she's asking if some other treatment like transcatheter arterial chemoembolization or RFA can work for multiple small mets in the liver.

[Olga]

RFA is the same valid treatment option for the small liver mets, it is used widely for other cancers liver mets. But this location - at the dome of the liver in the direct contact with diaphragm - is may be not good for the RFA, it might be very painful if at all possible to RFA ablate the mets there. Sometimes the chemoembolization is used prior to RFA ablation in attempt to achieve the complete destruction of the tumor by blocking the blood flow trough the mets so there is no heat sink effect and the thermal destruction is maximal.

[Bonni Hess]

Dear Lee, Jorge, and Olga,
If I remember correctly, Adam Beatty, one of our ASPS Community patients who tragically lost his courageous battle five and a half years ago, underwent a liver embolization procedure for his unresectable liver mets, but I am unsure if it was successful or not because his family was somewhat vague and infrequent in their updates. I do know that when embolization was used to try to block the blood flow during Brittany's initial spinal met resection, her neurosurgeon expressed the concern post op that in retrospect the embolization procedure may have been a mistake to use with this highly vascular tumor because he thought that it may have caused more spread of the spinal tumor cells which post op spread very rapidly up and down the spinal cord resulting in an emergency major Life/paralysis threatening spinal surgery for Brittany that has now left her with severe chronic spinal pain due to the one third of each of seven cervical and thoracic vertebra that had to be removed. I don't know if there is a difference between embolization and chemo embolization, or if they are one and the same, but If embolization is pursued as a possible treatment option for the suspected liver mets, I strongly recommend extensive research to try to determine if this is a viable procedure with documented success for ASPS liver mets.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Lisa]

Hello everyone,

This is Lisa, another ASPS patient:)
I’m here to help Lee to translate and post her doctor’s suggestion. It’s really a professional explanation, I’m not quite confident with my translation. If there is something unclear, please let me know.


The doctor’s explanation about why my ASPS firstly metastasize to liver is that:
Liver is the first stop to receive all venous blood of abdominal organs via the portal vein, therefore, compared to the tumor on legs or arms, primary tumor in the body are more easily to spread to liver.
My two largest liver mets are located at S7 area, which are very close to the diaphragm and one of them is just under capsule of liver. Around these two tumors, there may exists some small mets which are detected in DWI examination but not visible in MRI. Besides that, DWI also found a small possible mets near middle hepatic vein. My doctor said that serious pain may be caused by doing RFA near diaphragm and haemorrhage may happen if deal with the tumor which close to capsule of liver. And both of them are behind the liver, which is not the desirable position.
As to transcatheter arterial chemoembolization (using lipiodol), the doctor said that it will be an optimal choice if there is sufficient blood supply. However, it may not work on me since it’s nearly cannot detect any blood supply of my metastases.
Doctor’s suggestion is that, do the DWI examination every month and monitor those small mets. Do RFA once they are visible in ultrasound examination.

Here are some images of MRI and DWI. (Due to the attachment limitation, I'll upload separately). In MRI, the mets are shown in black while in DWI, they are shown in white.
The mets circled in red are the small tumors that are not detected in MRI.

[Lisa]

Three more images

[MartinBube]

Hi Lee,

it is probably a valid doctors explanation but apart from the Liver, did you have diagnosed also lung mets?
As I can see from what I have read until now it will go first to the lung and mainly all the cases that go on the forum are like this. Also in my discussion with 2 oncologist in Vienna, Austria both of them believe that is very unlikely that mets would go on liver first

Do you have confirmation that these are valid ASPS mets?
Do they get colorization when making an MRI with contrast?

also how big was your primary and how did you noticed the mets.

[D.ap]

Hi again Lee

I tend to agree with Martin as the pattern of ASPS primary travel has been to lungs .
Your primary was 2cm.

Was it on your spine ?

The most important thing in my mind is the doctors suggesting you wait for another scan and I tend to agree rather than risking further injury to your liver by RFA

Also , has your doctor talked about this possibility ?

I copied it while reading about liver lescions -

"A third type of benign liver lesions are adenomas. These are relatively uncommon, and are prevalent more in women than in men. They are thought to be triggered by the use of oral contraceptives and other medications involving large amounts of estrogen. People with diabetes mellitus are also more prone to developing this type of lesion."



I know its hard to do nothing but that ,at times ,is the very best desicision .
At least until the next scan.

Love
Debbie
Ps tell Lynette and Jorge hello