#38819 07-14-2005 10:32 AM | Joined: Jul 2005 Posts: 21 Member | OP Member Joined: Jul 2005 Posts: 21 | So, I went to meet the Radiation Oncologist today. It was not a meeting that filled me full of confidence. He is new, slightly awkward, unfamiliar with his surroundings and the equipment. His examination of my nose and throat was awkward and painful. The ENT surgeons managed several scopes without any real discomfort. I did not seem to learn much new except it is proposed I undergo a combination of IMRT Radiation and Chemotherapy, I have to meet the Medical Oncologist, he can't tell me when that will be exactly, as he does not control their schedule. I also have to get a measurement CT head scan so they can design the radiation beam to focus on specific areas. He did tell me that after the surgery I had I am considered gross disease free and that will allow them to use a lower dose 60gy and this may preserve other tissues a little better. The center is not an official comprehensive cancer center something about in the process of applying for it. He did confirm due to multiple lymph node involvement it is N2b and so is considered stage IV. He did mention a clinical trial or protocol but later apparently I was not eligble as I had already had surgery.
All in all I came away feeling underwhelmed, I am thinking of making contact with Roswell Park at Buffalo to see if they have head and neck experience and whether they would take me. I am a little worried about insurance and all that I am English and I am still unsure how all that works over here. I do not want to delay anything but I want to have confidence in those treating me...What do you guys think. | | |
#38820 07-14-2005 10:51 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2005 Posts: 497 | I believe I would get a second check by someone else. Sounds nothing like my Onco/Rad. He felt my nodes, asked me if I had any questiions that were concerning me,explained all about the stagin and grades, the side effects of the rads and told me all the steps that I would go through and when he told me "he" actually had a mask made for himself so he could better understand his patients I knew he was the man.
I would not want a new, inexperienced doctor when my life was on the line myself. Of course part of your edgyness could be fear of the unknown too.
May you find answers, Barbara~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#38821 07-14-2005 10:52 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Paul,
I wouldn't be full of confidence, either, after what you described. As I think back over the many different doctors I've dealt with since my initial diagnosis, I think on the (few) occasions when I was seen by a relatively new doctor there was also an experienced one looking over his/her shoulder at the time.
It's really important to have a sense of comfort with the people who will be treating you, so if that means traveling to one of the major cancer centers, it's probably worth it in the long run. I guess the nearest one is Roswell in Buffalo -- then you also have options in Cleveland, New York and Boston (a bit farther away but with solid reputations).
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#38822 07-14-2005 10:59 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hello Paul
I believe it is important that you have total confidence in your primary doctors. All the energy around you must be positive. If you don't feel comfortable for any reason, go elsewhere.
Love and best wishes from Helen
RHTonsil SCC Stage IV tx completed May 03
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#38823 07-14-2005 02:07 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Paul, If you decide to go to Roswell Park, send me a message. I was treated by a Roswell Park Extension of their radiation medicine group in Ithaca. I think they would be a much better place to go and you would get far better treatment than what you describe so far but their radiation medicine folks are set up a little differently than some other CCCs from what I understand.
I'll go into more detail through a private message if you're interested.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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