ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: luciacarmen on July 14, 2010, 04:14:39 pm
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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.
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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
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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
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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)." :D
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
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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
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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
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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 . . . :)
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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
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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
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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.â€
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