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Lung Cryoablation UK
Posted: Wed Jun 20, 2018 3:15 pm
by Dadoona
Hi all
My partner was diagnosed with synovial sarcoma last year and at high risk of lung mets. We are in Australia but are willing to travel to UK if the need arises for lung cryoablation. Could anyone give us names / details of the best, most experienced Doctors / Interventional Radiologist in UK please. Many thanks!
Re: Lung Cryoablation UK
Posted: Wed Jun 20, 2018 3:22 pm
by Olga
Two questions instead of answer:
1. Is he already Dx with the lung mets?
2. Why are you looking at UK? If you are going to be paying out of pocket, other countries are less expensive with even better experience/volume. The best cryo doctor is located in US (Dr.Littrup). UK is by far the most expensive country to get treated for the outsiders.
Re: Lung Cryoablation UK
Posted: Wed Jun 20, 2018 3:32 pm
by Dadoona
Hi Olga thanks for your reply! I know Dr Littrup is the best and he would be our first choice but I'd read we would need a referral to see him from a US doctor and that this could be problematic? ? Also i thought he'd be the most expensive??
My partner is also a UK citizen and we are hoping that possibly the treatment could be done through the NHS and we thought it would be less expensive but obviously not! Also my partner has family there but we do want the best and are willing to go wherever we need to.
No lung mets as yet - having 3rd scan results this morning.
Re: Lung Cryoablation UK
Posted: Wed Jun 20, 2018 10:52 pm
by Olga
For Dr.Littrup - no referral is needed for the out of country people, it is for the patients who is in the US it is better to get a referral to avoid the problems with the insurance. Other patients can self refer, the process is described in his tread - first need to call and register as an international patient etc.
For UK - they do have very good thoracic surgeon performing the cryo there but in UK the people do need the referral and it is very hard to get as they want to treat systemically first etc.
Re: Lung Cryoablation UK
Posted: Thu Jun 21, 2018 4:44 am
by Dadoona
Thanks a lot Olga!
Could you give me the name of the thoracic surgeon in UK please if that's okay. I have a contact in UK who may be able to speed up the referal process -fingers crossed!
Is that not unusual to have a thoracic surgeon performing cryoablation instead of an interventional radiologist? If iwe werent able to get cryo through the NHS and UK is more expensive than USA i suppose we'd go to Dr Littrup as he is meant to be the best in the world i think. Thanks for the info re self referring!
Third 4 monthly scans today since treatment finished back clear today thank goodness!
Re: Lung Cryoablation UK
Posted: Thu Jun 21, 2018 6:40 am
by D.ap
Dadoona
Great news on clear scans !
It’s been a year almost since surgery?
Here’s the post back in 2017 where Olga gave you links in which to navigate .
However Olga the one link isn’t working .
https://www.sirweb.org/patient-center/doctor-finder/
The icureasps post in 2017
http://www.cureasps.org/forum/viewtopic ... 285#p11289
Re: Lung Cryoablation UK
Posted: Thu Jun 21, 2018 7:22 am
by Dadoona
Thanks a lot for that it's really helpful! How are you doing?
Yes its almost 1 year since surgery, just need to keep getting clear scans for at least another 2 years for me to start relaxing a bit. I know when i last posted on here it was in the middle of all the treatments and i was on so many forums and doing lots of research that i lost track of where i had posted what!
Now im getting my act together and need to start a log of the most important and relevant information just incase the worst happens - i want to be prepared and it's much easier to do this when not as stressed!
Re: Lung Cryoablation UK
Posted: Thu Jun 21, 2018 7:57 am
by D.ap
You’re welcome .
I know each forum is a little different .:)
If you click on your name in the upper left hand corner it gives you your posts.
Or the 3 bars , when you first enter the forum where u see all the topics listed on the upper left side ,gives you new posts and or your posts as options
Working under stress I agree is not our best choice .
Good luck in your search
Let us know how it goes
Love
Ps our son is still on Opdivo after 2 years and is still experiencing reduction, elimination and no new tumors .
The first year was the most dramatic in elimination and reduction . Now we are working up to maximum dosage.
Thanks for asking .
Re: Lung Cryoablation UK
Posted: Thu Jun 21, 2018 6:54 pm
by Dadoona
Thanks for all the information Debbie!
That's such fantastic news abiut your boy! It must be so traumatic seeing a young one go through this let alone an adult. Thank goodness we at least are fighting these terrible diseases in the early stages of the development of immunotherapy treatment . I really do believe this is just the start of great things that can be achieved with immunotherapy!
Yes ill keep you updated on my progress and please do keep in touch. I've learnt through all this that so many people have such good hearts and are so helpful. Thanks again!
Re: Lung Cryoablation UK
Posted: Fri Jun 22, 2018 5:37 pm
by D.ap
http://www.cureasps.org/forum/viewtopic ... 597#p12194
Olga wrote:Deb, what Jussi is saying - it is the usual radiosurgery done as a hypofractionated SBRT - 8-10 Gy given in 3-5 treatment sessions (usually every other day or so adjusting for weekends). Ivan's was 8 Gy*4 times - every other day.
Seth - there are different ablative techniques that can be used in attempt to create the abscopal effect - radiosurgery, cryoablation, microwave, RFA. We have a member here - Jorge - he had a cryo few days before of the first Keytruda dose. We decided to go with the radiosurgery because I read the artcile re. immune response caused by the different modalities and although the cryo had the biggest response out of all, it also had the most variabilities - the responses ranged from immunosupression (the number of the needed (good) immune cells detected actually decreased in some patients) to awesome immune stimulation. With the radiosurgery the response was often smaller but never negative. Less risky in y opinion. Also less invasive and we have amazing radiosurgery doctor home, he was very supportive. Also Dr.Razak - sarcoma oncology head at the Toronto Princess Margaret Hospital who treated more ASPS patients - supports addition of the radiosurgery.
Dadoona wrote:Hi Olga
That's very interesting re response to various modalities - could you please tell me the name of the article so i can have a read? Did Ivan have SBRT and did he have a good response? Did he follow up with immunotherapy drugs? Many thanks!
Here’s Ivan’s story
MAIN menu
Under systemic ; ICI- Keytruda(6) topics
Click on then
http://www.cureasps.org/forum/viewforum.php?f=70
Then “Ivan’s “story
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506
Re: Lung Cryoablation UK
Posted: Sun Jun 24, 2018 8:25 pm
by D.ap
C
Re: Lung Cryoablation UK
Posted: Sun Jun 24, 2018 8:56 pm
by Olga
Deb - what does this article have to do with this topic? escapes me:)
Re: Lung Cryoablation UK
Posted: Mon Jun 25, 2018 5:37 am
by D.ap
Hello Olga
Just visiting with Dadoona about a synovial sarcoma
primary , of the abdomin , being rare.
I had remembered her family member having their primary in the chest wall .
This appears to be her personal thread .:)
Dadoona
I was curious of chest wall involvement in synovial sarcoma and found this article
http://www.cureasps.org/forum/viewtopic ... 285#p11285
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3377125/
I just wanted to welcome you to the ASPS clan and let you know we invite u to contribute when you feel the need.
: )
Love