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Autor Thema: Proton therapy and heavy ions - is it a solution for astrocytom?  (Gelesen 15551 mal)

anca

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Have you heard of   "HIT - Heidelberg Ion Therapy"?
What do you think about it?
Has anyone done the proton or ion therapy? Before or after surgery?

My name is Anca. I am a nurse from Romania and I have 40 years. I have accidentally discovered 2 months ago that I have a low grade astrocysm. Proffesor Samii from INI - Hanover recommanded to wait and to do the RMN after an year. The proffesors in Duseldorf, Erlangen and Asklepios(Hamburg) recommanded that the intervention to be done now.
In America, the prices are too big. It's too expesive.
How much does it cost in Germany?

I'm waiting for an answer,
Anca.

Offline Bluebird

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Re: Proton therapy and heavy ions - is it a solution for astrocytom?
« Antwort #1 am: 15. Januar 2010, 07:03:38 »
Hello Anca,

welcome to this page. I read about those treatments but have no experience on my own. Please kindly ask for an estimation of costs in one of the hospitals chosen.
Is there a chance that the low-grade astro can be resected (best case completely)?
I know that a resection incl. stay in hospital costs approx. 15.000 up to 20.000 Euro.
Maybe some of our members can share their experiences and advise more to this.
Prof. Samii, Director of the INI is highly recommended but if other opinions differ in the same way, a fast intervention may be the right decision.

My best wishes
rgds
Bluebird
« Letzte Änderung: 15. Januar 2010, 15:54:45 von Bluebird »
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Re: Proton therapy and heavy ions - is it a solution for astrocytom?
« Antwort #2 am: 15. Januar 2010, 09:20:12 »
Hello,


firstly, my English is terrible, I hope that you doesn't care :)


I don't know what it would cost but I know that the Heidelberg Ion Therapie don't use that with astrocytom.

But if you need informations you could call some people here: 0800 - 420 30 40 or ask there: https://www.krebsinformationsdienst.de/email-formular.php
That is a part in Germany which works with cancer people to give them informations etc.

Best wishes
katze

Victoria

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Re: Proton therapy and heavy ions - is it a solution for astrocytom?
« Antwort #3 am: 15. Januar 2010, 14:05:00 »
Draga Anca,

din ce motive operatia sau tratamentul TREBUIE sa fie in strainatate? La Bucuresti la Spitalul Bagdasar ai fost?
Cunosc personal cazul unei fete pe care o clinica germana a declarat-o condamnata (mie mi s-a dat personal verdictul ca sa-l comunic parintilor, deci nu e o legenda) si care a fost operata ulterior cu succes la Bucuresti. Au trecut de atunci peste 10 ani si totul e in regula.

Daca apesi pe patratelul de sub nume imi poti trimite un mesaj personal.

Victoria

anca

  • Gast
Re: Proton therapy and heavy ions - is it a solution for astrocytom?
« Antwort #4 am: 15. Januar 2010, 16:28:18 »
It was very difficult for me, along those years of medical practice, to let the patients know they had a tumour. But, to be honest, it is impossible for me to live knowing that I have such a diagnosis and also knowing, to my unhappiness, its cruel evolution in detail…
The doctors in Romania explained to me that no matter what attitude I would choose (they recommended that I should wait for the neurological signs for the surgery) the prognosis for the glial tumours is a bad one
To ask:
1 -  should I choose the surgery in this moment when I have no neurological sign? I know it is impossible that the tumour should be cut away entirely. It might be possible macroscopically, but what about microscopically?
          2 -  should I wait for the neurological signs to appear (mass compression)? What if this means that the tumour has become even more invasive? In this last case the surgery makes nothing but ameliorates a little the quality of life and extends it for a limited period of time!


Which of the two options that I have could extend my life and how long?
I think one can not know. (depends on genetic defects)

For surgery, are necessary in my case
        - neuro-navigation-system, intraoperativ MRI , cortical neural stimulation , Dr. Stummer has proposed using fluorescence-assisted resection with 5 ALA
 


        
In Bucharest, Romania does not have the equipment.
- Is not  chimiosensibility tests, determining gene MGMT…, at histological examination. Are not gamma knife.


Surgery is successful sometimes (of luck) Tumor is less removed.
For me surgery, radiation therapy is more cost but is my life.

you can write in German

Bitte in deutscher Sprache antworten. Mod.edit (Ancas letzten Satz hervorgehoben)
« Letzte Änderung: 16. Januar 2010, 14:46:21 von Ciconia »

Offline kit

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Re: Proton therapy and heavy ions - is it a solution for astrocytom?
« Antwort #5 am: 16. Januar 2010, 10:09:59 »
Dear Anca,
what you are feeling is quite normal . Most of us have gone through this phase of complete disbelief . Even without a medical background , there is the possibility of finding out what the outcome of such diseases might be .
On the other hand there are  quite a few of us , who can live long lives with good quality . Most Neurosurgeons apt for quality instead of quantity of life when possible espcially if the tumor is slow growing . To evaluate this one has to have a definite histology. This is only sure after biopsy .
Take a look at the international guidelines for Braintumors .
The more agressive the tumor , the more agressive the approach .
Most tumors of the central nervous system are not curable , due to the fact that microscopic cells stay behind even if  the surgical approach is microsurgical , with use of intraoperative MR, or the newer method using intraoperative fl- assisted resection . Cortical - neural stimulation is used if the operation field is near a vital area of the brain , to allow the widest possible resection with the least possible residual long term damage .
I do not think that all methods are used at once during neurosurgery , it depends on which field the neurosurgeon specializes in .
It is difficult to live with a tumor you do not want , but what would  the alternative be ? Would you accept invalidity in whatever form to live longer?
You are in a difficult position now trying to make a desicion , but it is one you have to take . Sum up the facts and try to decide which option is the best for you .
Just because hospitals here are better setup , does not mean they can garrantee you cure . No one can . lots of docters in the states mention removing all the tumor and promising cure , but this cannot be given in my opinion . Only one tumor of the CNS is curable and that is a Fibrillary Astrocytoma that is only found in children .
How did the Tumor present itself?  In which area is it ? What invalidtiy would you face if surgery would be done now?
You always have the posibilty of sending your specimens to a reference center after surgery if that is what you want . University clinic _ Neuropathology in Bonn is an accredited one .
My pathology was done in Bonn but they did not go for Genetics cause it may show the possible response to Chemo or an eventual prognose but it would not affect the desicion to go for chemo or radiation once it is needed. ( I had 12 months of chemo  without the determination of genetics or the presence of  a methylating enzyme  .
I get the bills sent personally , the costs for my hospital stay , surgery with evoked cortical stimulation , stay at intensive care was approximately 22 , 000Euros  . My stay was not complicated , was out in 10 days . That, i think would be a minimum . You would have to add up additional costs of travel and an accompanying person and eventual complications .  And that is just the beginning .
If you need additional radiation , would you have it done here ? that costs at least an additional 15-20,000 .
I had a huge tumor that had to be removed , have a rest tumor that is around 5 * 5 cm at the right temporal lobe infilterating into the occipital  lobe . 12 Months chemotherapy but no radiation . Will apt for second surgery when the tumor grows again.  I am glad  today i followed the advice of my neurosurgeon who warned me against going for radical resection at the risk of increasing invalidity . I have lived this past year being mostly the person i was before surgery apart from the pyschological scars that most of us live with.
keep it up girl
Kit
« Letzte Änderung: 16. Januar 2010, 11:21:09 von kit »

 



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