Author Topic: Residual  (Read 4642 times)

pjb

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Residual
« on: August 09, 2010, 09:22:33 am »
I just found out on my own that my 1 year MRI shows that I have some residual left from my surgery last year and it is in my ear canal. I will not go into all the details but I found out now the surgerons knew this at my 3 month MRI and I was not aware of it they had told me that the AN was completely removed ?? Now after receiving this devastating news as many of you had gone through what am I going to do now ?  They said not to worry to W & W for the next MRI but I have to think about my next step if I have to make a decision. I was afraid of radiation prior to my surgery and my other doctors also recommended to go through with the surgery but I am not going down the same path this time if it does grow.... But I am not comfortable with the radiation either and which if  decide to which one should I do Cyberknife vs. Gammaknife ??? I know everyone has different opinions but I am confused, disappointed and do not know what I should do given this new information.

I would greatly appreciate it if anyone has any encouraging thoughts....also does anyone recommend any place that specializes in radiation in the NY/NJ area...Thank you...

Best Wishes,

Pat
« Last Edit: August 09, 2010, 09:38:06 am by pjb »
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

HeadCase2

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Re: Residual
« Reply #1 on: August 09, 2010, 10:57:28 am »
Hello Pat,
  As AN patients we all dread hearing that the AN has returned in some way.   There are several people on this forum who have had GK or CK after AN surgery to treat any remaining tumor tissue.  Some treatment plans planned this from the beginning, with tumor debulking surgrey followed by radiation-- this is done to do everything possible to preserve the facial nerve.  I've also met one person at out local ANA group meetings that had this done, and they had no problems following the GK.  One thing to note is that the amount of radiation with this plan would be greatly reduced since the volume of the tumor tissue is much less.
  Your remaiing AN tissue is most likely not going to grow or cause you futher trouble since its blood supply has probably been cut.  I think your doctor has the right approach with "watch and wait".  Try not to worry. 
Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

pjb

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Re: Residual
« Reply #2 on: August 09, 2010, 01:25:40 pm »
Rob thank you so much for your words of encouragement your right at least the amount of radiation won't be as much as having a larger AN and it is in the ear canal and not on the brain stem which is another plus.  I guess it was the initial shock that they knew this and still said it was all gone that is why I did the surgery so not to be a W & W ( not my personality ) ... and now that is what I have to do along with alot of praying....

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Jim Scott

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Re: Residual
« Reply #3 on: August 09, 2010, 02:30:59 pm »
Pat ~

The doctors telling you 'we got it all' (sort of) post-op scenario is certainly frustrating, but not all that uncommon.   For what it may be worth to you: I went through a planned tumor debulking surgery (retrosigmoid approach) followed by FSR (27 gy total) and had almost no problems (no facial paralysis) with either the surgery or the radiation.  My recovery was relatively smooth and uneventful.  Four years later, I'm doing great!  I can't offer any guarantees (and neither can the doctors) but I wouldn't fear radiation.  Just be sure the radiation oncologist is experienced with ANs and that he works with your surgeon, as mine did.  Ask questions - and try to remain positive.  I'm confident that this will work out fine for you, as it has for many other AN patients, including me.   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

jerseygirl

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Re: Residual
« Reply #4 on: August 09, 2010, 04:31:25 pm »
Pat,

Sorry you have to deal with this situation but really, try not to worry. Has your residual increased from 3 month MRI to 1 year MRI? Any type of treatment would only be done if there is evidence of growth, otherwise you will be doing W&W by default. Your residual might not even grow in your lifetime, so you might not have to do anything about it. In case you have to, GK is highly effective and not damaging because (my understanding is ) the remainder of the tumor is far from the brain.

The oldest GK program in NYC is in Columbia. It was run By Dr. Isaacson and Dr. Sisti when I spoke to them. There is also a program at NYU run by Dr. Golfinos but it is newer and does not have as long as  a track record. My opinion is that the one in Columbia is better. The oldest in US is in Pittsburgh and is considered the best but I am not sure you need their extensive expertise.  Talk to everybody, see what they have to say. Best of luck in everything!

                       Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

sunfish

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Re: Residual
« Reply #5 on: August 09, 2010, 05:01:07 pm »
I agree with jerseygirl.  You may not ever need to do anything about this little piece of tumor.  I think it's common for the docs to leave a little behind, rather than damage a nerve (especially affecting your hearing?).  There could be an issue with radiating a tumor in the "ear canal," depending where it's at.  My neurosurgeon explained they would do CK in a manner which would "spare the labyrinthine organs" and reduce the risk of hearing loss.  Hopefully, you'll never need any further intervention, so don't get ahead of yourself with worry.  God bless you!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

pjb

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Re: Residual
« Reply #6 on: August 10, 2010, 07:58:07 am »
Jim, Jerseygirl and Sunfish, Thank you so much for your words of encouragement I guess the initial shock is over I guess if they would have been up front with me in the beginning I could have accepted it. But to find out like this was shocking and I will try not to get overly concerned until my next MRI at least it is slow growing.

Jim I have always read your story and your words of wisdom to others and I thank you your case has given me hope too...

Jerseygirl thank you for your recommendations in the NY area I was to have gone to Dr. Sisti a year ago for the surgery but he did not accept my insurance and I could not afford his price I am sorry I did not go to him but that is another story.. From some of the stories I have read how they do Gk seems intimidating I would just like your opinion how do you feel about CK treatments ?

Sunfish your right about leaving a little piece of tumor to preserve the nerve but living for a year saying and thinking it is all gone was just a shock.. I do not know if it is better to have the complete hearing loss there are things out there that you can do but to keep a piece of tumor left and the fear everyday wondering if it is growing is hard to do for some people. I am the type I rather have it out and never worry about it again I am thankful I have some hearing left and no facial paralysis but the waiting is not good all the stress that comes along with it to.

Thank you,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Lizard

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Re: Residual
« Reply #7 on: August 10, 2010, 10:42:58 am »
Pat,
I'm so sorry you had to find out this way, the MRI results are stressful enough without irresponsible Dr's.  I can't believe they didn't tell you, and even if it was miscommunication you would have thought that the Dr's at least would have a discussion with you regarding watching and waiting. 

Try not to worry too much, the residual tumor is small and who knows surgery could have cut the blood supply and it may never grow or even shrink.  If it does grow you can then get some alternate opinions.  HEI will accept consultations over the phone and I also sent my MRI results to UPMC in Pittsburg to explore radiation options. 
Try to hang in there and be cognisant of changes in any symptoms as that would probably be the best notification of possible growth in between MRI's.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

jerseygirl

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Re: Residual
« Reply #8 on: August 10, 2010, 11:46:59 am »
Pat,

I also found out that my first neurosurgeon did not remove everything 10 years later only after my scar tissue started to grow. It was not scar tissue after all, it was remaining piece of a tumor. I do understand your shock and probably the feeling that you cannot trust those doctors again or take their recommendations seriously. I was a young woman who went through two pregnancies during those 10 years, two factors (being a young woman and pregnancies) that spur tumor growth. That is why I am saying that there is a very good chance that you would not have anything to do with that tumor because it might not grow at all. There is an upside to aging: growth of existing tumors slows down! I tell myself that same thing: that if I get another recurrence, I might not have to do anything at all. After all, I am getting older!

As far as GK vs. CK, I am probably not the best person to answer that. I will try to tell you what I understand and if I am wrong, somebody here will correct me. GK and CK deliver different forms of radiation. Doctors who practice one over the other love to tell you that the other one will give you cancer. I would honestly ignore that. Statistically, the chance is very small and a lot of time has to pass for that to happen, like 20+ years. GK is older, better researched. GK delivers radiation in perfect circles (spheres is a better word) with a center getting the biggest dose of radiation. Since most ANs, unless they are very small, are not perfectly spherical, GK treatment will consist of many of those circles each one requiring repositioning of the patient. Circles will have to be overlapping thus creating "hot " and " cold " spots each receiving more or less radiation. Positioning system can be automatic or manual. Pittsburgh has automatic positioning system, Columbia had the manual one when I spoke to them but that was almost 4 years ago.

 CK, on the other hand, is much more automatic by design and spreads radiation over the entire tumor. I believe it also takes into account the patient breathing or moving just a bit. In your case, since your residual is so small, you would get very few (possibly even one) of those radiation circles if you had GK. With my long and irregularly shaped tumor, I would get many. So, you can get all the benefits of GK without its major disadvantages (many circles of radiation and manual repositioning). GK vs CK is absolutely your choice with none being clearly better, in my opinion. The longer you wait, the more chance is that the system would get upgraded or more research will come out. There is no need to rush. Good luck in everything you do.

                          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

pjb

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Re: Residual
« Reply #9 on: August 16, 2010, 11:42:21 am »
Thank you Liz and Eve for your replies I have not been on the computer going for more tests for other issues...  Eve I love that this is the first time in my life I like what you said about getting older that the tumor gets slower as we get older the other good thing is getting closer to S.S. so yes age now has some pluses thank you for that.... Liz thank you I have read so much about HEI but I felt uncomfortable to send it knowing that I would never get on a plane silly but that is how I think... I have read alot about Dr. Chang so at least if I choose Maryland or Connecticut the driving will not be that big of an issue.. I have not heard from anybody recommending someplace in New York which I am surprised at that and of course that would be an easier commute for me.

Like everyone said I cannot overreact just take my time and research it and I am sure I will be at peace with whatever I choose this time, I hope.  I am shocked because the surgeons with the original surgery and the hospital were top notched too !!!

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

annamaria

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Re: Residual
« Reply #10 on: August 16, 2010, 04:53:44 pm »
Pat,

you may want to check out

Joseph Landolfi, D.O., Director of Neuro-oncology, NJ Neuroscience Institute Brain Tumor Center at JFK Medical Center, Edison, NJ

They do Gamma.

www.njneuro.org

www.njneuro.org/bios/landolfi.asp

Annamaria

pjb

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Re: Residual
« Reply #11 on: August 19, 2010, 05:18:04 pm »
Pat,

you may want to check out

Joseph Landolfi, D.O., Director of Neuro-oncology, NJ Neuroscience Institute Brain Tumor Center at JFK Medical Center, Edison, NJ

They do Gamma.

www.njneuro.org

www.njneuro.org/bios/landolfi.asp

Annamaria

Annamaria I just saw your post thank you for that information I will definitely look into it.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.