Author Topic: Gk : wait and see after translab ?  (Read 754 times)

frenchgirl

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Gk : wait and see after translab ?
« on: December 16, 2019, 12:32:16 pm »
Hello,
I return to the site for the continuation of the adventures...
Operated on March 1, 2018 of a neurinoma (translab) with a size of 3.3 cm, I have a residue of 1 cm.
Small dizziness, headaches, tinnitus and fatigue but I was able to resume my work as a part-time bookseller.
MRIs show a stable state of the residual tumor. I have consulted two neurosurgeons who tell me i have to do GK now, because I am 34, because the size of the neuroma and its location, and because it will most likely grow.
So they offer me gamma knife right now. Suddenly I wonder if I should act immediately knowing that on the whole I am doing rather well and that I am afraid of the consequences of GK. Do you have examples of waiting and see after a translab operation and before GK? Do we have to wait for the tumor to grow before acting? I'm lost. Thank you for your feedback, sorry for my "google translation" english !
Happy New Year to all, joyeuses fêtes et joyeux Noël !
Mélanie

notaclone13

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Re: Gk : wait and see after translab ?
« Reply #1 on: December 16, 2019, 03:38:09 pm »
It is now a fairly common treatment strategy on large ANs to remove as much of the tumor as possible surgically, but to leave part of it behind to avoid damaging the facial nerve.  Radiation is then performed  to prevent the growth of the residual tumor.  I have become acquainted with two people locally that have had surgical removal of large tumors by translab, followed shortly thereafter by radiation.  I have read several posts on this board by other people who have had their ANs treated in a similar manner.  Tumors that are prone to growing very large, are not apt to change their growth characteristics without radiation treatment. The smaller the tumor, the smaller the dose of radiation needed to prevent future growth.  So it would seem to be good advice to get the residual tumor zapped now, before it grows large again and requires a higher dose of radiation.

ANSydney

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Re: Gk : wait and see after translab ?
« Reply #2 on: December 16, 2019, 04:14:19 pm »
Mélanie, why not see if it is still growing before subjecting your body to radiation?

frenchgirl

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Re: Gk : wait and see after translab ?
« Reply #3 on: December 17, 2019, 12:26:37 am »
Thank you for your answers !  They sum up my situation and my dilemma very well. the doctors seem convinced that the tumor will grow, so according to them I will have radiation anyway, so act now. I wondered if the protocol was rather "wait and see" elsewhere in France in a case like mine. But I rather have the impression that the protocol is really transab and gk for big Na? It is not easy to decide to go to gk when I am fine ... I would have liked to know if patients had had translab and then a lasting stability (several years) of the residue without growth. But I have not seen any testimony.

draguln

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Re: Gk : wait and see after translab ?
« Reply #4 on: December 17, 2019, 09:55:01 am »
Hello,
I m sorry because I cannot help you with your question. It is more to say hello from a french boy.   
I am on WW since January 2018 for a 6 mm AN. Each case is different, but when is your next MRI ? Are your doctors totally against to wait a further scan at 3 or 6 months to see if there is still any grow ?
Where are your doctors ? I go each 6 months to La Salpetrière at Paris. The GK team looks great. You may want to see them for an additional feedback.
Eric

Surfer

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Re: Gk : wait and see after translab ?
« Reply #5 on: December 17, 2019, 10:01:12 am »
Like you, the surgeon left a small portion of the tumor on my facial nerve during surgery.  That was three years ago and yearly MRIs show no growth.  One MRI indicates a decrease in size. I decided to watch for growth rather than treat with radiation for the following resons: the residual might never grow, there is no guarantee that it wont grow following radiation,  surgery is complicated if surgery is required following radiation, hopefully new procedures and improvements will be come available with time, radiation exposure has its risks, I will be watching for growth for the rest of my life whether I get radiation or not. I dont see a huge risk by waiting and more risk by treating.  That's my approach.  I hope to continue to report good things. All the best to you.
February 2016- 4.6 cm removed at Sloan Kettering NY by Dr. Gutin and Dr. Selesnick.  Residual left behind to preserve the facial nerve. Two year MRI indicates a shrinking of the residual. Three year MRI indicates no change in size.

ANSydney

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Re: Gk : wait and see after translab ?
« Reply #6 on: December 17, 2019, 03:23:09 pm »
Well said Surfer!

frenchgirl

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Re: Gk : wait and see after translab ?
« Reply #7 on: December 19, 2019, 08:23:49 am »
Like you, the surgeon left a small portion of the tumor on my facial nerve during surgery.  That was three years ago and yearly MRIs show no growth.  One MRI indicates a decrease in size. I decided to watch for growth rather than treat with radiation for the following resons: the residual might never grow, there is no guarantee that it wont grow following radiation,  surgery is complicated if surgery is required following radiation, hopefully new procedures and improvements will be come available with time, radiation exposure has its risks, I will be watching for growth for the rest of my life whether I get radiation or not. I dont see a huge risk by waiting and more risk by treating.  That's my approach.  I hope to continue to report good things. All the best to you.
Hello Surfeur,
Thank you for this very interesting testimony. I have 3 questions (if i am not too indiscreet  ;)) :
- is it your doctor who suggested that you wait, or did he want to do radiation and it was you who choose the wait and see option ?
- what is the size of your residue? Mine is 11mmx8mmx12, which is not small. Maybe that's why they want to act ?
- how old are you ?

On the one hand, I consulted in two hospitals, (Paris La Salpétrière and Lille), the doctors all seem competent but I sometimes have the impression that they want to do GK because they have the equipment and the skills, and therefore consider that it is necessary to act immediately! But on the other hand, the opinions are identical in the two hospitals so I tell myself that it is also based on their experience, my age and the size of the residue. This is why I would like to know if your decision is entirely personal or followed a possibility given by your doctor.

Thank you again for your help !

Melanie

Surfer

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Re: Gk : wait and see after translab ?
« Reply #8 on: December 23, 2019, 12:22:55 pm »
I asked the doctor for his opinion about radiation and he did not have a strong opinion about it either way. I was 56 at the time, now 59. The residual is 5 x 5 x 8 mm.  It's my understanding that radiation in younger people is more questionable than older patients because the affects over a longer lifetime are unpredictable. Im not certain about that, but it seems to make sense. I dont want to scare you, but it's worth considering what radiation might do to your brain after 50 years? Not sure they have significant historical precedent for that treatment outcome. It's a big decision.  Hope this helps. Like I said, I was a lot better off than those who were diagnosed 20 years before me. I'm sure those coming 20 years after me will also benefit from advancements. Im hanging and hoping for something better than radiation as long as it's a reasonable approach.
February 2016- 4.6 cm removed at Sloan Kettering NY by Dr. Gutin and Dr. Selesnick.  Residual left behind to preserve the facial nerve. Two year MRI indicates a shrinking of the residual. Three year MRI indicates no change in size.

 


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