Finally decided on Gamma- Knife. Now deciding on where!

[luciacarmen]

  Hello,  everybody.....
  I  have  mainly  been  quiet,  soaking  it  all  in  and  listening  to  everyone  &  what  everyone  is  experiencing  and  I  am  grateful  to  have  found  this  forum -  I  needed  it!
  I  have  been  so  overwhelmed  with  the  information  and  just  had  a  very  difficult  time  making  a  decision,  and  I'm  not  alone,  I  know   
  I  have  a  1.2  cm  left-side  AN  &  I've  heard  3  consults.  I  live  in  Houston  &  if  I  were  to  have  it  done  at  home,  I  choose  MD  Anderson  Cancer  Center.  Dr.  Demonte  is  the  surgeon-  there  is  a  new  machine-  he  recommends  GK.
  House  in  LA  recommended  rectosigmoid  approach  &  Dr.  Lunsford  in  Pittsburgh  recommended  GK  as  well. 
  The  deal-breaker  for  me  was  the  higher  incidence  of  persistent  headaches  in  surgery  (reportedly) ,  due  to  having  to  retract  the  cerebellum  to  get  to  the  tumor.  That  and  the  size  of  the  tumor,  the  associated  risks  in  anesthesia  and  surgery,  etc.  etc.
  Anyway,  after  flipping  numerous  times  between  GK  and  microsurgery,  I  have  decided  on  having  gamma  knife  surgery.
  My  question  now  is:  Pittsburgh  &  Dr.  Lunsford  being  pioneers  of  GK  in the  US-  but  MD  Anderson / Dr. Demonte is  in  my  back  yard.  Is  there  any  real  benefit  to  going  to  Pittsburgh?  What  should  I  base  the  comparison  on?

  And  thank  you  so  much ,all, for  generously  sharing  your  experiences  &  opinions.

[nanramone]

Hi Luciacarmen~

I had GK in Pittsburgh in May of this year. Generally, people on this forum suggest that you look at the experience of the team who will administer the treatment.

There are doctors in Indianapolis, close to where I live, and I chose to go to the more experienced people in Pittsburgh.

Do the doctors in your "backyard" have enough experience treating ANs with GK to make you comfortable going to them?

I'm happy with the decision I made.

Nancy

[Jim Scott]

Hi, Carmen ~

I'm pleased to learn that you've made a treatment decision, which is always difficult, but choosing a doctor (team) and facility is equally challenging.  I would concur with Nancy that you want a doctor with the most (GK) experience that you can find.  If your local doctors have sufficient GK experience, that should be your answer.  If not, that too is an answer.  Ultimately, you'll have make the choice but carefully examining a doctors 'track record' is imperative.  I trust that you'll be able to choose a doctor that you can feel confident with.

Jim

[luciacarmen]

 Hi,  Nancy,

Everyone  talks  so  highly  about  Dr.  Demonte's  team  but  that's  his  surgical  skills  &  cancer  care  in  general.  MD  Anderson  &  Memorial  Sloan  Kettering  in  New  York  have  alternately  been  ranked  top  in  their  field  and  that  speaks  about  the  level  of  care  in  general.  In  other  words,  it  is  a  world-class   institution  but  should  I  entrust  my  care  to  them  in  this  arena?

Like  my  24-year-old  son  says,  "I don't think that getting gamma knife surgery will necessarily be advantageous with the pioneers of the industry -- e.g., while Samsung may have pioneered the 3D TV market, Sony will soon release a version that is far superior. I'd be more keen to go with pioneers/leaders of a field for a type of therapy that wasn't so depending on high-tech tools (e.g., straight up surgery)."  

I  guess,  the  question  for  me  is:  if  the  machine  is  new  &  updated,  the  crew  is  reputable,  trained  &  professional ,  is  there  going  to  be  a  difference  in  what  they  do  from  one  institution  to  the  other  on  this  technical  procedure?

One  advantage  being  home  is  the  support  system  I  have  at  home  and  in  the  hospital  but  I  will  not  compromise  quality  of  care  just  to  be  convenient.


Carmen

[luciacarmen]

 Thanks,  Jim. 

I  just  have  to  get  more  information  and  sleep  on  it,  but  I  am  glad  I  got  the  1st  piece  figured  out.

Later,
Carmen

[mk]

Hello Carmen and welcome. Arriving to a treatment decision is one of the most difficult tasks. Choosing were to get treatment is another important decision.

To add to the debate, I wanted to stress the importance of good follow up. IF the institution close to home is reputable, and has sufficient experience, the advantage of choosing them is that you will have better follow up. This is VERY important, especially since issues can crop up post treatment. I have seen quite a few people who have been dismayed by the lack of proper follow up when they need it most.  A compasionate and caring team is very important.

Your sons point is very valid too. Nowadays radiosurgical treatments are pretty much standardized. Of course your team has to lay out a plan for treatment (i.e. radiation dose etc), but these are pretty much well published and known. The machines are also pretty standard.

Good luck with your decision.

Marianna

[sunfish]

Well, I had CK, not GK, but faced a similar question.  I had to decide whether to have the local docs and hospital with a fairly new CK machine do my treatments, versus traveling to California or Pittsburgh or somewhere else.  After talking with the docs, I decided that it's not like surgery, where the doctor needs a steady hand.  A whole lot of your treatment will be in the hands of medical physicists, or someone who does the treatment planning and programs the machine.

Once the local docs had outlined the fact that they would use the same treatment protocol as Stanford, I had my treatments done in my own community.  I have had some post-treatment difficulties, but there's really no reason to believe they are due to the relative lack of experience of my doctors.  And I've had the benefit of having local followup afterwards.

Don't know if this is helpful or not - I don't regret having had CK locally, at least not so far . . . 

[Vivian B.]

Hi Carmen,

It is a relief when you make a decision. I want to wish you luck on your procedure which you will find quite an interesting experience. I had GK two weeks ago and I was happy with the procedure. Still doing well.

Take care.

Vivian

[luciacarmen]

Hi Carmen,

It is a relief when you make a decision. I want to wish you luck on your procedure which you will find quite an interesting experience. I had GK two weeks ago and I was happy with the procedure. Still doing well.

Take care.

Vivian

Thank  you  for  your  comments  &  opinions.....they  are  very  helpful  to  me  &  minimizes  very  much  that  deer  caught  in  the  headlight  feel  for  me.

Vivian,  where  did  you  have  your  GK  done?  home  or  away  from  home?

Carmen

[nanramone]

Interesting - I took this from MD Anderson's website:

This group of physicians believes that whether benign or malignant, rare or common, tumors are best treated in a specialized program where there is a concentration of experience, as well as rehabilitation resources for the critical path to a quality life for patients, and that just such an environment exists at M. D. Anderson. “I have never worked in a place that had this gamut of services,” Dr. DeMonte said. “This is our focus: it’s all we do.”

If I lived close by to a facility with a doctor who had this kind of confidence in his work, I would not have left Indiana just because Dr. Lunsford is a pioneer. But the people in Indianapolis failed to convince me that they had the experience I was looking for. The oncologist I was referred to did a lot of work with prostate cancer, and his bio listed his HOBBIES, which struck me as unprofessional. His nurse was unable to tell me anything about his success rates, but assured me, "his patients sure love him!"

That was a bit disconcerting, to say the least. I looked elsewhere.

My follow up care is great, by the way. I have talked to Pittsburgh post treatment, and they are very responsive - additionally, I found a neurologist here who is willing to be involved with my followup care. He runs a dizziness clinic, which is where I go to rehab for imbalance issues which have increased after GK.

Nancy