Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Amanda, I would assume that MRI is the best choice but since you have already started consulting two very good drs - Dr.Suh and Dr.Littrup - They both are interventional radiologists - they will let you know if there are any other scans they need to see to clarify the nature of this adrenal nodule. Dr.Littrup is vey careful and will not do any procedure only because the patient wants to, he will review the scans and request all he needs else to make an informed decision.

Hi Amanday,

The Cryoablation is usually done with local anaesthesia and the pain is uaually can be tolleranted. However, some Dr. offers cryoablation in general anaesthesia. You can ask Dr. Litterup if he can do that if you're too afraid.

Good luck with your consult with Dr. Litterup.

Dr.littrup always uses local anaestesia sedation whenever it is possible - the level of pain with cryo is low comp to any surgery, do not worry about it. It is preferable to avoid the general anaestesia if possible as it elevates the pro-angiogenesis factors.

Amanda,

Olga is right. The pain of Cryoablation is nothing comparing to the surgery you just had. You've been so brave!
By the way, how is your pain after the jaw surgery? Is it going away now?

Love,
Lynette

Hello Lynette
The pain is better now an i take advil an small amounts of NORCO when i need it.. The leg is getting better but hurts more then the jaw lol

All in all this surgery an jaw is starting to close with good results...

Now Adrenal Gland 2CM thing still unknown an the lungs ... I hope that Dr L or Dr Sul will be able to kill al of this...

Thank you for caring about what is happening with me when you are also at war with his sarcoma <3 You are a dear lady <3

Still waiting on Dr's to return calls to me about the information they received.
I am on hold right now with Dr Suh office i am asking to talk to him even if he has not gotten the scans yet. I am frightened when it takes time an want to act! This is going to mess my sons an my familys summer
An also most important is this 2CM thing is ASPS an i sadly think it is i want it dead!
DR Abton who works with Dr Suh is going to talk to me even if they have not gotten the scans yet

OMG he said he an Dr Suh can freeze the mets i have an he has frozen a 7cm tumor before on a 90 year old woman an it worked

I feel like dancing lol

I may still go to Dr L depending on what he says though to be honest he has been our main doctor for years now.
I must say though to everyone the Dr Abton should be looked into for us he has a wonderful heart an his care has shown by picking up the phone no scans an talking to me because i was frightened an didn't want to spend my weekend like that!
If Dr L says stay with him an he may they know eachother ))
Then he maybe our new LA man...

I am going to try and have a weekend an try and forget i have cancer.

I will post back on monday *If i can stay away* hehe

Love to everyone in my ASPS family! xox

Amanda ~

Yeah Amanda

Moving forward!! I am so glad to hear this

Have a great weekend!
Love
Debbie

Dear Amanda,
I am so grateful that things are moving forward so quickly in such a positive direction for getting some answers and treatment sometime soon. I am grateful too for the 2 Cryoablation doctors, Dr. Suh and Dr. Abton, who you have found in your area which gives you a closer tratment option than traveling to Detroit for treatment with Dr. Littrup with the additional time and expense burden that it involves for travel and housing.
Enjoy a beautiful and relaxing weekend free of thoughts of cancer and knowing that many special caring thoughts are with you.
With special hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

We are still waiting on Dr L an Dr Suh to respond to the CDs an information sent by Dr Forscher.

We are both wondering why they are not responding :/

I have called Cancer Treatment Centers of America to look into their Cryosurgery *cold* experience

I wish the others would respond

Well, they have had the dicks for a week now and my Onc said no calls yet from them

I am not sure why Dr L an Dr Suh have not contacted him

I put a call into Cancer treatment centers America in hope they maybe able to help me.
They are making sure my insurance will work and will let me know today who if anyone has worked with ASPS before...
I do know they started as a rare cancer center an that was their focus. Anyone know about them an should i even see them at all?

I really want these over with or to at least start I am going tomorrow to get the ultra sound done an i will post back what is said...

xox

Amanda - I am probably missing something here but why you decided to work with Cancer centers of America on cryo option instead of Dr.Littrup team?

Dear Amanda,
As difficult as I know that it is, I urge you to try to be patient awhile longer until you receive a response from Dr. Littrup and Dr. Suh. I personally have concerns and apprehension about your pursuing treatment at Cancer Treatment Centers of America based on the negative and devastatingly ultimately fatal experience of a very close friend who had male breast cancer, as well as ASPS patient Jordanne who was being treated at Seattle Cancer Treatment Center of America when they totally missed a brain met that resulted in her having a seizure that caused her to suffer a serious fall ( from which she heartbreakingly never totally recovered) and have to be transported by helicopter to the University of Washington Hospital. These may be two isolated cases, but I strongly encourage you to thoroughly research the ASPS and Cryoablation experience/knowledge of the facility/doctors you are considering seeking treatment from. Have you discussed your plans to seek treatment from Cancer Treatment Center of America with Dr. Forscher? I think that patience, caution, and research are very important before you make this important treatment decision.
In the meantime, my very best wishes and most positive thoughts are with you for your tomorrow's adrenal gland ultrasound, and I will be anxiously awaiting your next update.
With special concern, caring thoughts, healing wishes, love, and continued Hope,
Bonni

Hi Olga,
i didn't decide this i am just concerned that they have both not contacted my OInc that sent them the CDs and info yet an i am frightened

Hello Bonnie,
Ok, i will wait longer I am just frightened an i would have liked this done already The thing that maybe a 2 CM tumor on the adrenal gland is really worrying me

I will call them both again tomorrow

Its weird but some thing inside said to stay away from that group an now that Olga an you both have said to wait i will 100%

Its just hard to wait i am frightened! I will know more tomorrow about the 2 CM thing an i will post back ...

Hello again dear Amanda,
I am so sorry for all of the stress, worry, and fear that you are experiencing, but it is important to try to calm yourself as much as possible (which is much easier said than done as I know far too well!!) and make rational well informed decisions. I am sure that both Dr. Littrup and Dr. Suh are trying to be very thorough in their review and assessment of your scans and they will get back to you as soon as they can provide you with the most accurate information, diagnosis, and treatment recommendations based on their expertise and experience. A follow-up phone call to their offices would certainly be appropriate to inquire about the status of their review and to get some kind of estimate about when you will receive their diagnosis and treatment recommendations. It has been our experience in almost 13 years of dealing with Brittany's doctors, that the squeaky wheel does get the grease, so to speak, and it does not hurt to make them politely aware that you are anxiously waiting for a response. In the meantime, Hopefully tomorrow's ultrasound will provide you with some more definitive answers, and VERY Hopefully the answer will be a confirmation that the area of concern is NOT an ASPS met, but rather a benign easily treatable lesion of some kind. For now, do whatever you need to do to relax tonight with a sunset walk, glass of wine or cup of hot tea, massage, good movie, etc. and get a good night's rest, and know that you are not alone on this journey as you have the special caring and support of all of us on this Board who care so deeply about you.
With special hugs, deepest caring, positive thoughts, healing wishes, much love, and continued Hope,
Bonni