Did Dr refuse surgery?

[Doulos]

Just wondering if any had a doctor tell them they they wouldn't do surgery? I'm curious because my surgen left some of the tumor behind and was recommending Gamma Knife (he didn't refuse to do surgery, we just haven't talked about it yet. Still waiting for him to call back). I'm not real sure that I want the radiation option. So I was curious if any had to do radiation vs surgery?

[Tod]

Doulos, last month when it was determined that the remains of my tumor was indeed growing,my neuorsurgeon was very clear that he did not want to go back in. When I saw my neurotologist last week, he reinforced that given the location and the nature of the tumor, surgery was not an option. Neither was doing nothing. This leaves radiation. And again, given the location, only FSR at the lowest dose is recommended by all concerned.

Best advice is to ask your docs lots of questions and feel free to get second or third opinions. I am fortunate that I trust my docs completely, but if I didn't I would follow the same advice I  gave you. Which is what I did initially.

I hope this helps,

Tod

[ppearl214]

Just wondering if any had a doctor tell them they they wouldn't do surgery? I'm curious because my surgen left some of the tumor behind and was recommending Gamma Knife (he didn't refuse to do surgery, we just haven't talked about it yet. Still waiting for him to call back). I'm not real sure that I want the radiation option. So I was curious if any had to do radiation vs surgery?

Yes.

Met with my neurosurgeon (brain speciality) who also did an internship in gammaknife radiation.  She looked at me, squarely in the face,  and said "I don't want to cut, go have radiation done."  This was all based on the size/location of my AN, my overall health and other factors.

She earned a lot of respect from me that day.  A dr that was so truly honest, someone who earns a paycheck from cutting..... and she told me otherwise.  I followed her advise and to this day (she still follows me) is thrilled to see how well I have done with my radiation choice.

Phyl

[leapyrtwins]

My neurotologist gave me the choice of radiation or surgery - he does both.

I asked him to choose for me, but he refused to do that; said it was my decision and he was absolutely right.

However, I do know he has flat out told other patients to have radiation or to have surgery.  The treatment options that are available to different patients are based on individual circumstances - size and location of AN, etc.

Jan

[jerseygirl]

Hi Doulos,

I had 6 cm removed in 1988 and had second surgery in 2007 to remove the tumor completely. So far, everything is clear. In my search for the treatment leading to the second surgery, there were a number of surgeons who refused to do the surgery. Some did so explicitly ("I don't recommend surgeries for regrowths") and some did so implicitly, quoting bad outcomes and saying "I won't go there", meaning the facial nerve. Moreover, because of the shape and location of the tumor, I was also deemed to be "a challenge" by radiation specialists I consulted.  I finally found a surgeon who said he would attempt full tumor removal and facial nerve preservation. Well, MRI is clear so far and my facial nerve is preserved. Don't despair, tread your waters carefully and consult as many specialists as you can to understand the most possible about your particular situation. Good luck in your search.

       Eve

[Doulos]

Eve you are a trooper to go through that. 6cm is huge! I was surprised at so many people having symptoms worse than mine with smaller tumors. Well anyways turns out I have a regrowth where he did surgery. He was recommending GK at first, but now he is recommending surgery again because of that. Thats kind of what I wanted anyways since I have to have a second procedure for the rest. I thought I would be one and done and moving on. Not so, not so. I'm still recovering from the first surgery.

[mk]

Do you know the size of the remmant/regrowth?
Over the years we have seen all combinations, i.e. surgery followed by surgery, surgery followed by radiation, radiation followed by surgery. All can have successful outcomes, but it appears that the second treatment needs experienced hands.
Jim Scott is a classic case of successful debulking surgery, followed by planned radiation. For sure I wouldn't discount such an option. I am sure he will chime in this discussion.
My suggestion is to make sure you consult a lot, so that you can make the best decision. You have a new baby now too, so obviously you will also need to consider urgency for treatment, downtime, after care etc.

Marianna