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Hello, doubts, a little of everything


#1

Hello, a couple of days ago I did a presention not unlike the one you'll be reading shortly in the Sarcoma Alliance Facebook. Some of you will know me, many others wont, even so... here is my story, or to put it right, my wife story, Heidi.
Around 9 years ago Heidi started noting a lump on her right ankle (outer part) which was diagnosed as a Synovial Cyst. Year after year the doctor said the same speach, if it doesnt affect you daily life, leave it there.
Leon, our son, was born Sept 2014; he is 1 year and a month old, HE IS SUPERB!!!!!!


This March Heidi noted a lump on her right thigh (it hurted a little), after LOTS of exams and two biopsies (thigh lymph node and "Cyst" on ankle), the diagnosis was changed to Soft Parts Sarcoma.
PET "blinked" only on both areas that we already knew, though the nodes extended from thigh to just above pelvis.
Almost a month ago Heidi had a successful surgery (no biopsy results yet), they removed everything from the ankle (which was inmobilized, incredible surgery with 3D navigation) and the node area was claned up thoroughly.
Heidi is getting better at an incredible rate, no swelling or anything, which is really great! (she cannot use the operated foot for the next 3 month). The bad thing is that a very little lump appeared overnigth last week under her collarbone (just under the skin). We are a little affraid of this (eco doesnt show anything conclusive), we'll have a biopsy next Tuesday.
We live in Argentina and there isnt any "official" Sarcoma center. We are going to Hospital Italiano, which appears to be the place to go in the Country. The doctors are top notch, but are not "specialized" in Sarcomas... which makes me a little, well you know.
The oncologist said that we are going to do another CT, if everything was in place, the next step was to do some wide area radiation in the thigh + pelvis. Again the new lump is giving us the creeps with this.
I took the chance and made an appointment with an "Investigative doctor" which did had some sarcoma specialization. She is an eminence with soft parts tumors and said that if we do get "clear margins", she wouldnt do any radiation. BUT she couldnt take the case (she doesnt handle any cases right now, because of multiple travels and line of work).
Hence, right now we are left with two different routes:
- Do radiation as the "non-specialized" onco suggested. I have to remark that he wants to avoid rays to the ankle, probably for healing issues.
- Dont do nothing, as the specialized doc suggested, but she wont be doing any follow up either.

I have to leave clear that Im not really sure that Heidi has an SS, all the biopsies only mentioned Soft Parts Sarcoma; Im just assuming as this was originally diagnosed as a Synovial Cyst and live in the outer part of her ankle (no bone compromise).
Im sorry if sometimes I do mistake myself and my wife as the "patient" here, but Im taking the investigative approach (and do speak english, which is helpful).
This last couple of weeks Ive been doing TONS of research and Im preparing everything for the next meeting with the Onco (this Wednesday), so hopefully Ill have some further data to share.

Any suggestion, possible questions, further questions for me... just anything will help :)

Bests!
Heidi, Leon and Ariel


#2

It would be good to have a confirmation on the diagnosis. I am guessing soft parts sarcoma is ASPS:

http://www.cureasps.org/what-is-alveolar-soft-part-sarcoma/

You need to know for sure as treatments vary from one sarcoma subtype to another...

We have two other members from Argentina:

http://www.synovialsarcomasurvivors.org/profile/luz

http://www.synovialsarcomasurvivors.org/profile/oscartennis732

May be they can share their experience about the place they went to for treatment?


#3

Heidi, Leon and Ariel,

I’m sorry to hear about the news you received. Have you guys thought about getting another opinion from a different doctor? Would you consider a specialized doctor if out of the country? I know it’s a lot to think about and sadly, money plays a huge factor with cancer, but I would see if there is anything you can do. Maybe even if you can have a conference with doctors over the phone or video chat if you’re able to send your wife’s papers and tests over to someone. I would just highly suggest seeing a sarcoma specialist oncologist being that this type is so rare. Please don’t hesitate to reach out to me if you need to. We can all use emotional support and if you have any other further questions or concerns, we would all be happy to help if we can.

Wishing you guys the best,

Julie


#4

HI, my first priority will no doubt be to define this... thing. I thought of SS, as it was a little more common and originally diagnosed as Synovial Cyst, but Alveolar might be another possibility, as indeed it been incredibly slow growing.

In the mean time is there anything specific that I might look in the existing biopsies in order to define if its SS?

Julie: after two different paths, Im most willingly to contact an expert (whom can at least do an overview of the case) and have a consultation. The real problem here is that I do not know where to start or whom to contact?
Travel its another item, Ill be willing to pay, but I has to be something really good... Heidi wont be "walking" for at least two more month, and we have an year old son, so travelling in general will be really complicated.

Elodie: Ill be contacting them!

Thanks!!!

Ariel


#5

ASPS and synovial sarcoma have a very different look under the microscope. It should be easy to differentiate.

The following website has a lot of information about the different types of sarcoma and how they look under the microscope:

http://sarcomahelp.org/

They diagnosed your wife's tumor as a synovial cyst because of its location close to a joint. The name synovial sarcoma is a misnomer. Originally given because synovial sarcoma tends to locate close to joints and looks like synovial fluid on images. Real diagnosis is done by a pathologist by looking at tumor tissue under the microscope. If you want a diagnosis confirmation, you probably could have the tissue slides shipped somewhere else to a pathologist who is very familiar with sarcoma. I see that on the ASPS website, they mention Dr. Ladanyi regarding the chromosomal translocation. He was the one who did the test on my tumor for the synovial sarcoma translocation. Other members can probably suggest other pathologists...


#6

Hi Everyone, some time has passed and I got some findings. Now I know, what this is, truthfully I always knew, but I missread the reports... dont know why.

Three words: clear cell sarcoma

First, should I resign from this board? I just dont want to make "noise" on a pretty defined theme specific boards.

If Im ok, perfect :)

Further developments:

* They were to do a prophylactic linfadenectomy on the pelvis, because two removed nodes (on that area), were tumorous. This was canceled, as we are pretty close to last surgery (1 and half month), the area is a little bit complicated and no further indication of disease was found there. Just as a reminder, Heidis surgery was comprised of: wide ankle resection (got inmobilized), all the nodes on the thigh removed and a couple of pelvis two.

* Small node under collarbone is going to be removed probably next week (really small surgery).

* Started with contact to MD Anderson, they are proceeding with some protocols close to melanomas which appear to work. This kind of cancer is also called MSP (melanoma of the soft parts) as it appears that it was originally incorrectly placed in the sarcoma family (well, its a grey area at the least). This route might be the best, but its extremely expensive considering that we are off-country (travel + no coverage).

* As a diet, we are going pretty natural, though still eating pastries (guilty :). On this area I do have two intentions:
- Start following a route of more anti angiogenic food. thoughts?

- Dandelion root, has anyone read anything of this? I normally doesnt give much thought on natural therapies, but this has some really good lab results (its under human trial right now in CA) and its called lion's tooth; my sons name is Leon (lion) so... well call me crazy :)

I would really like to be more active, here and on real life, but I do have work to do, its tough to manage everything.

Super bests!
Ariel


#7

Ariel, don't feel like you have to resign from this board. You're welcome to stay. On the other hand, you may want to try to find other patients with clear cell sarcoma. There may be groups specifically for them online although I don't know of any personally. Each sarcoma respond differently to different treatments and it can be useful to hear from other patients with the same subtype...

Regarding MD Anderson, would it be possible for them to share their protocol with local oncologists in your country so you don't have to travel to US? Treatments are really overpriced in the US...

Regarding "anti angiogenic food", there's been a big hype about this because the theory behind it is so attractive. But a drug like votrient, an "anti angiogenic" drug doesn't work on all sarcoma and it turns out that the reason it works somewhat on synovial sarcoma has nothing to do with the initial theory about angiogenesis...

Now, it can be useful for your wife to try something she believes in, just for the placebo effect. It can do wonders against anxiety and fear. It's best though not to rely solely on alternative treatments...

Good luck!

Elodie


#8

Hi, I did reached a FB "private" group... which is being great, they directed me to MD Anderson. Apparently they are working on inmunotherapy and I think we do not have those "vaccines" over here. Definitely pricing is an issue... Here we get everything covered by our social security firm.

The slight issue (or non issue) with my wife is that she is being "lead" through this, she is not researching or anything... I think its out of fear and, truthfully, I do not want to push her either; she is healthy and fully concentrated on our baby. So the rest of the family is working on this behalf. The problem is that its difficult to "sell" something, diet, herb, juicing, anything if she doesnt get into it...

Regarding diets itself, angio its "easy", ketogenic sounds promissing... but its extremely difficult.

What do you mean about angiogenic not working for the expected reason? For which reason is it working apparently?

Bests!

Ariel


#9

The popular theory is that angiogenesis inhibitors prevent tumor cells from making new blood vessels to support their growth. In synovial sarcoma, the theory has evolved to a much more complex one that only applies to this particular disease and may explain why angiogenesis inhibitors don't work as well for all sarcoma:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462399/

I wouldn't try to push your wife into alternative medicine or diet if she doesn't want to. It's her life and if she wants to leave it to fate then it's her right. I understand it's frustrating for you but there is no known cure for this. It's more like a lottery. Something might work for someone and make somebody else worse and there is no way to predict who will benefit and who won't.

Immunotherapy is new and vaccines are still in clinical trials. Usually, that means pharmaceutical companies are paying for the trials, which is very expensive for them in the US. I am wondering if a local oncologist contacted the company, would they let him try the drug in your country?