June 23, 2019 at 5:44 pm #98789bglassModerator
Thank you for the update. I was trying to research your question a bit. Apologies in advance – this is a long message. I know that available healthcare resources can vary a lot from one country to another. Some of the information below may already be well known to you, but hopefully this is a little bit helpful. Whether in the U.S. or in any other country, when dealing with a rare cancer, often it is up to patients and caretakers to bring the different healthcare threads together to have a good treatment plan, as you are describing your own efforts on behalf of your beloved mother Clara.
From what I can tell, IMRT is available in Argentina and proton therapy facilities are in the works. The on-line information on the status of proton treatment that I could look from here seemed to suggest treatment is hoped to be starting soon – it is established as a partnership between INVAP and CNEA. I saw one report on line that seemed to indicate patients have already been treated with proton therapy in Argentina, but other reports indicate the facility is still under construction. International reports suggest proton treatments will be available this year, but local press suggests it would be later. I am sure it is easier to know what is going on when you are in the country. (This is a correction to my earlier posting.)
I found on-line references to radiology centers offering IMRT therapy, again, without much mention of liver cancer other than one mention of treating hepatocellular carcinoma.
There are also some doctors and researchers working in Argentina who seem to have involvement with cholangiocarcinoma treatment, judging from medical journal articles published with authors who are attached to Argentinian institutions.
What is not evident is whether the doctors and researchers are pursuing the types of radiation treatment you are interested in.
If it were me trying to quickly pull together information, I would try several things in hopes something would work out.
First, I would try to identify local doctors experienced with cholangiocarcinoma and see if I could get them interested in the case. You can internet search “Argentina” and “cholangiocarcinoma,” then look at the medical journal articles that come up. If you bring up articles, generally the authors’ identifiers will indicate what hospital they are attached to. Looking at the names and hospital affiliations might help figuring out where the expertise is resident.
Second, I would try and make contact with the lead doctors associated with the local radiology centers and see what experience they have.
It may be possible to have treatment in Argentina if you can pull together a good medical team.
Third, if there is not much experience with your mother’s type of case in Argentina, another thing you might consider (which in fact was mentioned in a recent post related to another patient) is to seek a remote second opinion from a major cancer hospital in the U.S. or another country if this is offered. A number of major cancer centers in the U.S. offer this service, where you send the medical records and their experts will take a look at the case. The recent posting on this board indicated a cost of $700 for the opinion for one hospital. I saw the same program in a different hospital with a charge of $750. The remote second opinion could advise on a specific treatment option, or could help determine what treatments are available.
The challenge will be in getting the various players to work together. In speaking to medical providers, it would be good to continually ask does the individual have ties to the radiation centers? Does the U.S. or other foreign hospital have any professional relationships in Argentina?
Thinking about radiation, here are some further thoughts – I imagine you know this already but these postings get a lot of readers so I try to include information helpful to others as well. One challenge with gastrointestinal cancers is there are a lot of vital organs densely packed together in this part of the human geography, so any treatment has to be carefully devised so as not to take out some other vital organ as collateral damage from the cholangiocarcinoma treatment. Radiation can be targeted, but some cholangiocarcinoma tumors have unfortunate locations that defy even very skillful, high-tech radiation. For this reason, it is important to have an expert opinion that radiation is possible. This requires a careful look at any scans that have been done. From there, if a patient is viewed as a good candidate for radiation, the radiology center will perform some modeling and planning. This study will determine if more highly targeted forms of radiation must be used to avoid causing damage. In my own case, IMRT was necessary because less focused radiation could not be safely done. The radiologist then sent the planning studies to my insurance company to prove that IMRT was necessary, which can be a difficult approval to get because of the additional cost.
For your mother’s case, it was not mentioned whether any planning studies had been done to determine if IMRT or proton radiation would be essential to safe treatment. If not, this is something to consider looking into, possibly with a local institution. I am not sure how this should be sequenced with seeking a second opinion from another country if that option also seems useful, but certainly the doctors you are conferring with would have an opinion.
Finally, I wanted to comment on relying on medical journal articles about promising new treatments. It is great to see potential breakthroughs related to our rare and difficult cancer. It can be hard, however, to judge the effectiveness from initial studies. The numbers of patients may be too small to make a statistical inference that would apply to a bigger population. Moreover, sometimes in initial testing, selected patients may be healthier or younger or otherwise not representative of a general population. If I were looking into a new treatment, I would use clinicaltrials.gov to identify the listed points of contact for any clinical trial studies of the new treatment, then would try and contact them by phone to have more detailed information about the treatment and early results.
Apologies for such a long message. I hope these ideas are in some way useful.
Take care, regards, Mary
June 20, 2019 at 6:03 pm #98776InthefightParticipant
- This reply was modified 9 months, 2 weeks ago by bglass. Reason: Provided corrected information
We are looking for centres performing this technique as crafted by MD Anderson a few years ago:
This applies to either SBRT with IMRT or Proton, but revolves about giving ablative radiotherapy dosis (+85 Gy fractioned) instead of traditional palliative ones (15-25Gy fractioned).
My mothers ICC size is around 7cm and resembles some of the clinical cases reported by MD Anderson papers regarding this ablative therapy.
This approach for ICC cases costs around USD 200-300K at MD Anderson (without insurance). I’m aware Dr Chris Crane is now working at MSKCC so I suppose it’s being perfomed at that centre and possibly Mass General as well.
Looking for other centres that might have the technical capabilities to perform this procedure internationally.
LuisJune 18, 2019 at 3:57 pm #98765bglassModerator
I found an on-line publication called “Proton Therapy Today” that maintains a list of international proton therapy centers. It is locatable through an internet search.
Proton therapy can be challenging to have approved by insurance in the U.S. In some cases, the radiologist must demonstrate that more traditional modes of radiation therapy cannot be safely delivered. A few of our patients have reported having this treatment but it is not yet very common. Is there a reason it is being prescribed for your mother rather than another form of radiation?
Regards, MaryJune 18, 2019 at 12:08 pm #98763InthefightParticipant
I’m looking for large-mass ICC ablative radiation treatment Centers options outside the US.
The new ablative option using IMRT or Proton in high doses (+85Gv) seems to be only available at MD Anderson, Mass General or MSKCC at a private cost of 200-300K.
We live abroad so no insurance option for the US of course.
Would you know of any other center worldwide with this ablative capacity?
Japan seems to be at the forefront of this technique…
- This topic was modified 9 months, 3 weeks ago by Inthefight.
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