Where we live and Where we were treated

I was not treated at a major cancer center.  I do, however, live in the greater metro Atlanta area, where there are some very good healthcare facilities and doctors.  I received treatment in my hometown and my medical oncologist's group was Atlanta Cancer Care.  I received my chemo in the infusion suite in their office.  My radiation oncologist is with Radiotherapy Clinics of Georgia.  I had 2 rounds of Mitomycin and 5FU in weeks one and five, concurrent with 30 radiation treatments over a 6-week period.  My tumor was on the fence between Stage 1 and Stage 2.  That all took place in 2008 and I'm still here.

Martha

I liveI  in Ohio and was treated at the Cleveland Clinic.  I was diagnosed with stage 4, mets to the lymph nodes, liver.  I had standard radiation and chemo of 5Fu and mitomycin.  I also had liver resection surgery to cut out part of liver where cancer was.  I was diagnosed in 2011 and I am doing great!  More active now then I ever was

i live in a small town in north louisiana... proctologist here mis diagnosed me for over a year so i was NOT going to stay here for tx..(later correctly diagnosed in Shreveport , louisiana by colorectal surgeon)......drove 7 hours to houston to go to MD Anderson who had seen anal cancers.....i had 2 rounds of mitomycin with 5 fu on week 1 and 5 concurrent with 28 rounds of radiation.....that was 2009... i was stage 2 no nodes no mets..... sephie

live in New Mexico, misdiagnosed for more than a year.  Cancer found during third colonoscopy.....between stage 2 and 3.  Treated at MD Anderson, Houston, Tx, 800 miles from home.  Nearly 5 years NED, RELEASED FROM MD ANDERSON woohoo!

First treated on Long Island with multiple surgeries, 2 years later transferred to Memorial Sloan Kettering in NYC treated there with major surgery, chemo & radiation for stage 2, finished treatment summer 2014

I have yet to be staged or treated.  Anal Cancer determined through biopsy during colonoscopy.  Further steps delayed due to insurance issues.  I am in Lake City, FL with my sister and was pretty set on going to MD Anderson in Jacksonville and getting a place to stay there during treatment, probably "Third and Main" which is for Cancer patients.  But now I'm wondering if I should go somewhere that offers Proton Therapy and I'm not sure yet if MD Anderson does.  I know University of Florida Health Proton Therapy Institute has it but not sure if they specifically offer it for Anal Cancer treatment.  I have seen  though that Proton Therapy has been used in the treament of anal cancer in some facilities in the country.

If Proton Therapy is not an option and the normal protocol/treatment is the same everywhere, I'm wondering if it's necessary that I go all the way to Jacksonville and go to the additional expense of paying for my own place to receive daily treatment.  My latest idea is to get staged and have a treatment plan figured out in Jacksonville, followed by treatments in Lake City or Gainesville, closer to my sister.  As you may be able to tell, I have a very hard time making up my mind.  Not to mention that these kind of decisions are challenging anyway.

tanda said:

Lake City, Gainesville or Jacksonville

I think you are doing very well in gathering  information.  I have a terrible time making decisions,  and at, least there were not several chemo cocktails to chose from...like breast and other cancers.  However there needs to be some new thinking about treatments for us, like there is for some other cancers.

I was treated in 2015.  At that time, the only centers offering proton therapy for a.c were the University of Pennsylvania in Philadelphia and Mass General in Boston. I think Scripps may also have been using protons.  Mass General and Penn were doing a PILOT study to determine if using protons for a.c was feasible. MD Anderson in Houston was not using protons for a,c

The theory is that the pencil beam was more precise than IMRT and would cause less damage to healthy tissue in surrounding areas (bladder, bowel,pelvic bones,etc)  I don't think there is any outcome data as yet....too few patients and too few proton centers!

I was treated with Protons at Penn (not on the trial) .  I don't know whether it was risky because it was still a bit experimental(.treatment planning for protons is complex and there is a learning curve)  My thinking was that pelvic radiation has some very long term effects and i wanted a chance to reduce that risk.

I was fortunate in that I live in Philadelphia and it was very easy to get to daily treatments..and I knew that the  Radiation Oncology Department was supposed to be excellent.

I had the same side effects (frequency and urgency, no appetite, malaise, pain in treated area)  I didn't have terrible mouth sores ...some hair thinning and general  misery.  The Xeloda caused hand and foot syndrome in the last 2 weeks.   Not everyone experiences the same side effects  in the same degree.

I wish you well.  It seems all of the places that you are considering are excellent.  If you  e-mail me I will send you the cell phone number of the woman on the other site who lives in Fla .

 

Tanda

hey... i do not know enough about proton beam therapy but will it hit all the lymph nodes that are needed to be radiated ???? imrt does go all the way around and hits inquinal nodes as well as others......just a thought to consider.....thx...sephie