Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Sharmaine

Cryoablation, according to some articles ,is used as last resort in some cancers as they are generally A LOT more aggressive and faster growing than ASPS, alveolar soft part sarcoma .

Cryoablation, if found to be safe to perform in the lungs i.e where it's located in relationship to vital organs , should be first choice as it preserves an ASPS lung functions so future surgeries and procedures can be performed.

Asps is known to be slow growing or referred as indolent unlike cancers such as metastatic melanoma etc.

Get that brain scan report though.

You are doing great in hanging in there!
It's exhausting some days but will pay off in the long run

Love
Debbie

I am somehow puzzled re. "Pneumothorax is needed for cryoablation"? Pneumothorax is a complication that can happen if cryoablation is performed by the non-experienced interventional radiologist, it is a collapsed lung. A pneumothorax occurs when air leaks into the space between your lung and chest wall. The more experience the interventional radiologist has, the less probably that pneumothorax will happen. In about 10 cryoablation procedures that wew done by Dr.Littrup, Ivan did not have a single case of pneumothorax. Sometimes it happens even when the doc is very experienced, but rarely.
This is what happens when you discuss the procedure with someone vaguely familiar with it. The best doctor to discuss it in your area is Dr.Suh from UCLA, take a copy of your CT scan on a CD and try to get him to review it or send it to Dr.Littrup.
Did they discuss why the VATS is needed at all? Is the goal to obtain a tumor tissue for the gene expression study? The lung mets located in some areas like upper lobes apex might be less accessible by the cryo probe, so more like a valid reason for the VATS or radiosurgery.
Did the doctors provide the possible complications with radiosurgery? Although it is less invasive, its long term side effects could include fibrotic changes in the lung tissue when it does not work anymore and fractures in the ribs located close to the target as the scattered dose is pretty significant - we had both complications in our patients and one of them Jen is your neighbor. Usually the long term side effects are less important as most cancers and sarcomas are more aggressive and people do not live long enough to be affected by the long term effects, but with ASPS it is very important. There are no articles or studies evaluating a radiosurgery versus cryoablation. Our community just happen to be very close related to the most experienced cryoablation doctor in the world Dr.Littrup as our patients were among the first one he successfully treated, and he always reviewed the scans free of charge, and usually is able to get the insurance to pay for the treatment.
Almost 100% of the ASPS long term survivors had to disagree with their primary doctors at some point, well - not disagreed but rather went for the second expert opinion directly to the most experienced thoracic surgeons, oncologists, radiologists or cryo doctors. It is highly unlikely that anyone would get all the best doctors right in their home hospital. You have to be sure that the treatment proposed is the best one not only to destruct the met but also to preserve the lung function.
Also - I posted the info re. laser assisted surgery doctor replacing Dr.Rolle, it is here:
http://www.cureasps.org/forum/viewforum.php?f=51
you might want to get evaluated there too.

Sharmaine
This is an excellent article to give to your oncologist.

Its kinda of graphic, so if you have a weak stomache , you might selectively read jus the abstract and the conclusion.

http://www.ncbi.nlm.nih.gov/pmc/article ... 04-408.pdf

Cryosurgery for lung cancer
Lizhi Niu1,2, Kecheng Xu1,2, Feng Mu1,2
1Department of Oncology, Affiliated Fuda Hospital, Guangzhou Institutes of Biomedicine and Health, Chinese Academy of Science, No. 91-93
Judezhong Road, Haizhu District, Guangzhou 510305, China; 2Guangzhou Fuda Cancer Hospital, Jinan University School of Medicine, No. 2
Tangdexi Road, Tianhe District, Guangzhou 510305, China

ABSTRACT
Cryosurgery is suited for patients with lung cancer who are not considered for lung resection because of the advanced stage
of the disease or the patient’s poor general condition or poor respiratory function and with tumor recurrence following
radiotherapy, chemotherapy or lung resection, and those patients who have localized lung cancer but refuse to receive
operative therapy. Procedures of cryosurgery for lung cancer can be performed through endobronchial, direct intrathoracic
(at exploratory thoracotomy) or percutaneous routes depending upon location and size of tumor. Six hundred and twentyfive
patients with Non-small cell lung cancer (NSCLC) received percutaneous cryoablation in Fuda Cancer Hospital
Guangzhou, China. One hundred and fifty patients were followed-up for 12 to 38 months. Results showed that 1-, 2-, and
3-year survival rates were 64%, 45% and 32%, respectively. The adverse effects after cryosurgery of lung cancer include
haemoptysis, pneumothorax, bloody thorax, pleural effusion and pulmonary infection which are generally mild, transient,
and recovery with symptomatic management. In vitro studies have shown cryotherapy of lung cancer cells can improve the
immune system to trigger the specific anti-tumor response. In the future, comparative studies between this modality and
other therapies should be conducted for the treatment of lung cancer. In addition, more attention needs to be put on the
immunomodulators that enhance the cryoimmunology.
KEY WORDS Lung cancer; cryosurgery; cryoablation; cryotherapy; cryoimmunology

Conclusion
Percutaneous cryoablation offers an effective therapy for patients
with locally advanced non-small-cell lung cancer, without
serious complications. It is especially suitable for the treatment
of unresectable lung tumors (e.g., the cancer with multiple
nodules, large tumor and ill-located tumor) and for the cancer
patients with co-morbidity conditions considered to be poor
surgical candidates. The therapeutic efficacy of the procedure is
preponderate over that of routine chemotherapy and radiation.
In vitro studies have shown cryotherapy of lung cancer cells can
improve the immune system to trigger the specific anti-tumor
response. However, this study is still a preliminary one. In the
future, comparative studies between this modality and wedge
resection, stereotactic radiation or other therapies should be
conducted to further determine the efficacy and role of this
novel approach for the treatment of lung cancer. In addition,
more attention needs to be put on the immunomodulators that
enhance the cryoimmunology. Nevertheless, according to the
current data, percutaneous cryoablation, a feasible and miniinvasive
technique, has demonstrated an encouraging efficacy in
the treatment of advanced non-small-cell lung cancer.

Another article on ASPS--Indolent sarcoma

http://www.curesarcoma.org/patient-reso ... ypes/asps/

Sharmaine here! I was doing some reading, and it seems I misunderstood what "pneumothorax" meant. I thought it was an instrument a part of the surgical process. Many apologies for causing confusion.

Thank you all for pooling in all this info for me, I deeply appreciate it. To be completely open, my parents have tried on my behalf to seek second opinions elsewhere, but what stopped us was red tape in getting our Insurance authorized, which caused their efforts to fade away. So currently it's up to me to do the leg work.

Again, thank you all for all of this information. All of this has revved up my spirit in being the most proactive I've been since my dx. It makes me a bit regretful in spending the last year not preparing/suppressing worry about my disease since I wasn't symptomatic, or in believing all my mets were untreatable.

I have an appointment to meet with Dr. Chang next Wednesday. Not too sure about meeting with him now, but I will try to make the meeting as constructive as I can.

Olga, how do I get into contact with Dr. Suh and Dr. Littrup? I don't want to accidentally mess up and contact the wrong doctor of the same name.

Sharmaine - you should not cancel the meeting but in the meantime try to organize more second opinion reviews of your scans. During the meeting ask what is doctors personal experience with cryo - it is the most important part when picking the doctor to perform that technologically complex procedure - only 100+ cases doctors can be really comfortable with performing it in the challenging location. All our patients from US had their cryoablations with Dr.Littrup in Providence or Dr.Aoun in Detroit paid by their insurances, I am not sure what the procedure was. We paid out of pocket for all Ivan's cryoablations, as our Canadian insurance will not cover it as we have a cryo doctor here, we only go for his cryo if the location is relatively easy to access - he is a great doctor and very honestly says when he sees the case which is better to be done by Dr.Littrup - they all know that Dr.Littrup is the top doc in the area and sometimes you need just that to fix something very complex by very low traumatic approach (Dr.Liu our local doc says he has zero ego when the patient's best interest is concern). The hospitals contact the insurance themselves (I think).
On the other hand if they won't be able to get this paid for by the insurance, the radiosurgery option is better than nothing. The laser assisted surgery is not paid by any insurances from US or Canada, but if you think of having it at any point, it is better to be done before of any cryo or radiosurgery on a clean surgical field. It is about 15K USD I think incl. the flights but I am not sure. It is your choice - to have few more aggressive mets treated locally and hope that some systemic treatment will be effective or to go for the surgery in hope that they will be mostly resected and it will give you years of the good time. The window of opportunity for the surgery closes when they consider they can not resect all or if when they find any other distant mets - brain, bone etc.
Unfortunately the limitations of what is covered by the insurance or what is avail. locally limits the tools the local doctors operate with and therefore we can not rely on their advice fully as they will not offer/comment on what is avail. somewhere outside. Only some of them will, there is some liability issues they are afraid of as technically they have to provide you the best care available. It is very important to understand it and not to feel that their advice is inferior by the reason their lower qualification, the good relationship with the local team is very important so even when we disagree with them, we keep them in the loop and explain our reasons/rationale behind our moves, they learned to respect that during the years as our results are better then theirs - they just work under the lots of restrains.

Hi Sharmaine,

I read your story and am very sorry you have to go through this too. I'm in LA too, but my onc is at UCLA. Unfortunately, I have HMO Medicare so I don't have the luxury of going to other hospitals for treatment.

I agree with Olga and Debbie that you should try to seek more opinions and explore the cryo option more. My SBRT radiation to my lungs haven't had the best of results...now I have a permanently collapsed right lower lobe lung due to the fibrosis and met blockage. I also have fractured ribs...maybe from coughing, maybe from radiation, or maybe both.

Dr Suh info: https://www.uclahealth.org/provider/robert-suh-md
Robert Suh, MD
Specialty:Diagnostic Radiology
Department Affiliation:Radiological Sciences, General Diagnostic
Hospital Affiliation:
Ronald Reagan UCLA Medical Center
UCLA Medical Center, Santa Monica

I believe that's him....

Stay strong!
Jen

Just got a call back from my physician's office, saying that my doctor rejected sending the Insurance Authorization number. Currently taking the moment to cry. I've been on the phone the whole day being transferred from representative to the next not knowing how to help me with that. My heart goes out to all of you dealing with this unrelenting disease and that your doctors are treating you very well. I cry for all of you at the moment.

Insurance politics. Sigh.

So sorry to hear that. Yea, I hate dealing with doctor office admin/reps and insurance. They always seem to transfer you to different people and takes so long to resolve. But we can't let things like this keep us down. All we can do is keep trying and try to stay positive, right?

Dear Sharmaine, I had written you a previous longer response but it frustratingly got lost in cyberspace when I tried to post it so this is an abbreviated version. I am so sad and sorry .for your tears from the doctor's (inexplicable) refusal to submit a request to the insurance company ( for the cryo?!?) and the frustration of unsuccessfully trying to get some help and resolution from the insurance company, but don't be sad, get mad, stay strong, persevere, and don't give up on this critically important matter in your receiving the best and most viable treatment for your largest most concerning lung mets. Also, it is important for you to know and understand the difference between SBRT and Cryoablation which you erroneously seem to use the terms interchangably. SBRT ( Stereotactic Body Radiosurgery Therpy) utilizes high dose targeted radiation directed at the tumor while Cryoablation involves insertion of a probe directly into the tumor to freeze, shrink, and Hopefully destroy the tumor. In our personal experience with Brittany, and based on my extensive anecdotal observations as well as per Jen's post, I personally feel that Cryoablation is a much better treatment choice for ASPS lung mets and one which I, like Olga, Debbie, and Jen encourage you to continue to pursue. In our case with Brittany 12 years ago, lung met Cryo was very new, unknown, and unsupported by Brittany's oncologists at Seattle Cancer Care Alliance, so we researched and pursued the treatment against the oncologists advice, and were very grateful that we did because it was successful in shrinking and destroying several of Brittany's largest, most concerning, and unresectable lung mets for which the oncologists had offered us no other treatment options. Take care dear Sharmaine, stay pro-active, and reach out to Dr. Littrup and/or Dr. Suh for an evaluation of your situation. With caring hugs, healing wishes, and continued Hope, Bonni

Thank you Jen and thank you Bonni it means a lot to receive such warm supportive words. I am doing my best to keep my head up.

Quick updates:
I finished my full bone scan yesterday, waiting on the results.
I am meeting Dr. Chang tomorrow. My onc replied back to my question on why cryoablation was not recommended. He said it was due to the locations of the mets, and that cryo may be an option for future mets. I'm planning to ask him about his experience with cryoablation and his opinion on the location of the mets.
I am scheduled for a brain MRI on Friday.

I'm afraid this insurance stuff is going to be a major hindrance, so I should be making plans on changing it up.

Hi Sharmaine,
I'm sorry to hear that. I can't give any ideas, just want to give you a warm hug to help you stay positive and find your way to work all these problems out.

Lynette.

sharmeebles wrote:Just got a call back from my physician's office, saying that my doctor rejected sending the Insurance Authorization number. Currently taking the moment to cry. I've been on the phone the whole day being transferred from representative to the next not knowing how to help me with that. My heart goes out to all of you dealing with this unrelenting disease and that your doctors are treating you very well. I cry for all of you at the moment.

Insurance politics. Sigh.

Hi Sharmaine,

My mom has been fighting this disease for over 2 years now, we also live in LA area. I can 100% relate to your frustrations with insurance companies. I have cried out of frustration many times, and I think it's good and healthy to get that out when you're feeling that way. Keep persevering and don't let them stop you from getting the treatment you need. My mom has an HMO that fights us at every step. I know that Kaiser has a unique system here in Cali, I'm not super familiar with it myself. If you have the option to change your insurance to a PPO I would recommend that, but I understand that may not be feasible or realistic. Find out if your hospital has an advocate that can help you sort through this process. My mom is treated at UCLA and we have a person who helps us file appeals and strategize how to get insurance approval.

Sometimes when I'm on hold with the hospital or insurance company I do a little dance to the annoying music to make myself laugh. Super silly I know, but maybe you can try it and channel your inner Tay Swift and shake it off?

I can also relate to facing obstacles with cyro. My mom hasn't been able to get a referral to the specialist at UCLA Dr Suh. For now we've stopped asking and are moving forward with SBRT, which I believe is a good option as well.

Stay strong, lady. Sending you lots of love from long beach

I am really feeling the love, thank you Lynette, thank you Jolie. I'm looking forward to seeing how on-hold music dance sessions will improve my moves haha.

I just met with Dr. Chang who will perform VATS on two of my lung mets, this Friday March 25th. He says it will be an easy operation, tha taking them out should take less than an hour each. His confidence is erasing all my nervousness. I will spend time in the hospital recovering for at least 3 days.

There will be a total of two incisions: one on my right and one on my left side. Then they will perform VATS. As far as pain to expect, the rib area may feel bruised, there may be pain from the cuts themselves, but walking and sitting should be no problemo.

While I'm an in-patient, I should also be able to get my brain MRI done as I approach release out of the hospital.

Dr. Chang's understanding of cryoablation is that it is recommended for treating single tumors at a time and not multiple ones. He also mentioned age, how cryoablation would be for someone older with maybe other lung problems. But all of this seems to clash with how effective it has been for us ASPS survivors.

Sending everyone warm hugs. I am so grateful for all of you <3

Thanks for an update. It is a reality that we should use the best treatment from the ones that are available to us, not from everything that is avail. at all. All of them - cryo,VATS, radio surgery are used and the decision on which one to choose is often based on an access avail. to the experienced doc - I.e. although the cryo is a better option overall, the VATS done by the very experienced doc locally might be better than cryo done by the less experienced doc locally if the money for the expert level remote doc is not avail. I hope it makes sense. To make the best from the VAts make sure that the tumor tissue is stored and tested for markers and slides are avail. to get in the future if some trial will require to provide them at the point of entry. Good luck.

Dear Sharmaine, Since the Web site was down for several days due to being hacked, I was unable to post you my good wishes for a very successful VATS procedure on Friday, but I Hope it went well and that you are now Home from the hospital resting and recovering with minimal post op pain. I Hope too that you were able to have your brain MRI while you were in the hospital and that it showed no brain mets. I am perplexed and surprised about what Dr. Chang told you about Cryoablation since it is definitely NOT just used for older patients with other lung problems, and contrary to what he told you, it CAN be used to treat more than one met at a time, as was done when Dr. Littrup Cryoablated 3 of Brittany's largest and most concerning lung mets. Dr. Chang may be an excellent pulmonary surgeon , but he is apparently not very familiar with, nor well informed about Cryoablation and has unfortunately provided you with some erroneous information about it. If further lung met treatment is needed I urge you to consult about the possibility of Cryoablation with an experienced oncological interventional radiologist such as Dr. Littrup or Dr. Suh. In the meantime, take care dear Sharmaine and keep in touch as you are able. With gentle hugs, healing wishes, special caring thoughts, love, and continued Hope, Bonni