How do I choose the right doctor and treatment facilities?

Mary Gelewski
Mary Gelewski Member Posts: 5
edited May 2016 in Anal Cancer #1

During a routine annual gyn exam, my doctor felt something unusual.  I immediately went to my GI doctor that same afternoon.  He felt the same thing and scheduled a colonoscopy which took place two days later.  A biopsy was done and analysis was "poorly differentiated squamous cell carcinoma".   I found out on April 12, 2016.  I have yet to go to any other doctor due to problems with my insurance.  My home is in Columbus, Georgia and I had an Obamacare policy in effect.  In March, I had left my home to stay with my sister in Florida.  Long story as to why, but in a nutshell, many family problems at home and my leaving was something I'd considered for a number of years, and finally took the plunge.  I'd gone back to Columbus in April for several days one of them being to go to my GYN exam.  After this life changing news, my first important decision was whether to go back to Georgia to get treatment or stay in Florida.  This decision was hard and took time.  I decided on Florida because I felt it was where I'd have the most support.   My Georgia Obamacare would not cover Florida providers.   So I had to go through the process of terminating that coverage, which again took time.  You can't just cancel and start elsewhere.  There is a delay of a couple weeks.  Ultimately, my Florida coverage begins June 1st, 2016.  So from the time I got this diagnosis to the time I can ultimately go to an oncologist for more tests, treatment, etc., I will have waited nearly two months.  I am afraid this wait is dangerous, but I don't have a choice.

Researching doctors online has been very difficult.  You really can't obtain reviews or recommendations.  I feel like I'm searching blindly.  I am currently in Lake City, FL, about 30 minutes from Gainesville and an hour from Jacksonville.  I have been told that commuting to radiation treatments is extremely difficult because it's painful to sit and in a car, obviously that's what you have to do.  From where I am now, the shortest commute to radiation will be at least 20 minutes.  I am concerned about limited options in LakeCity and the experience of doctors here.  I want someone very educated and experienced on Anal Cancer in particular.  So I'm considering UF Shands Cancer Center in Gainesville, FL, and the Mayo Clinic or Baptist MD Anderson, both in Jacksonville.  How do I choose?  (I am leaning or drawn for a reason I don't know to MD Anderson.)  As for the difficult commute, my sister whom I'm currently living with (who is a nurse) and I have come up with an idea.  That after two or three weeks of treatment, I get an efficiency in Jacksonville very close to the radiation center, so I don't have much of a commute.  Then I would have various friends and family come and stay with me at different times, sharing in the process of helping me.  Any advice as to whether this makes sense?

Comments

  • danker
    danker Member Posts: 1,276 Member
    #2
    cancer

    MD Anderson is best place for you!  Good Luck.

  • Tracy figg
    Tracy figg Member Posts: 36
    #3
    Surroportl

    I m not from the the states but where there is family is always the best you need surport i no. Is have anus cancer and my treatment been a ling time to i still waiting for surgery because im allergic to chemo you well be ok just remember that good luc

  • mxperry220
    mxperry220 Member Posts: 496 Member
    edited May 2016 #4
    Doctors Rated In Florida

    Here is a link that might help regarding doctor ratings in Florida.   You will need to type in your location in Florida.  

    https://www.ratemds.com/best-doctors/fl/jacksonville/

  • sephie
    sephie Member Posts: 650 Member
    #5
    go where they have seen many anal cancers

    mayo is good as well as md anderson  thx...sephie

  • jbug2
    jbug2 Member Posts: 73
    #6
    Whatever you do, try to

    Whatever you do, try to hasten treatment, you want to catch the cancer in an early stage. I'm sure your sister (being a nurse) has told you this.  I like your plan to get a bit closer to the center after the first few weeks.  I was about 15 minutes away from my treatment center and it worked out fine.  In the early stages I drove myself, in the later stages I leaned a bit more on my husband for driving, etc.

  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    Doctors

    I am very sorry to hear of your diagnosis and that you have a reason to be here.  Your best bet is to find a doctor with experience in treating anal cancer.  I know you are a good distance from Tampa, but Moffett Cancer Center there has been the facility that some people with anal cancer with whom I've communicated in the past have gone for treatment.  However, I really think you also need to look into MD Anderson, Mayo Clinic or University of California/San Francisco.  Dr. Eng at MD Anderson would my choice there and Dr. Berry would be my choice at UCSF.  I am not familiar with any specific doctor at Mayo.

    There may be doctors in your immediate area with expertise in treating anal cancer.  I live in the metro Atlanta area, but received my treatment in my local community, which meant going to a smaller hospital and radiation center.  However, I am a 7 1/2 year survivor, so apparently my treatment was effective.  You can go on Vitals.com to look up doctors.  There are patient reviews on that site for each physician.  However, focus on their education and areas of expertise/experience.  When you are finally scheduled with one, make sure they have treated anal cancer patients in the past--you do not want to be their first one!  You do need to get someone lined up ASAP though, since you have already spent a couple of months getting relocated.  As you know, cancer does not take a pause just because we are busy. 

    I wish you all the best in getting scheduled with a good doctor.  After all of the preliminary testing is done, I hope that your treatment will begin ASAP and that it will be successful.  Please keep us posted.

    Martha

  • tanda
    tanda Member Posts: 174 Member
    edited May 2016 #8
    Doctors and Treatment Centers

    I noted that U of Florida has a Proton Radiation Center in Jacksonville.  It might be worthwhile to find out if they are treating a.c. with proton radiation.  Very few centers have proton radiation and those that do may not be treating a.c. or GI cancers, but it is worth asking.  The idea about proton radiation is that it is targeted to the tumour and spares more surounding tissues in areas like the bowel and the bladder.

    About logistics:  call the local American Cancer Society or the Social Work Departments in these hospitals to see what local resources are available. The Am Cancer Society usually has volunters who will transport you to treatments and appointments  AND ,often if they don't have volunters, they have a $300 taxi  There may also be a Meals on Wheels or other oganizations that delievers food.  My hospital social worker put me in touch with a number of useful resources

    The HPV Anal Cancer Foundation has an excellent website and a list of questions to ask the Drs.

    Unlike many cancers, initial treatment for anal cancer is standard...there really is one basic protocol with slight variations.  i had Xeloda (capecetebine) which is the pill form of 5FU  (check the NCCN Guidelines )

    As others have mentionned, hopefully you can find some docs that have treated anal cancer.  The basis of the treatment is radiation., so I would look for a place with an excellent, experienced radiation department...Shands used to have that reputation, the Florida center in Jacksonville may also be good..the fact that they have protons may be significant

     

     

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited May 2016 #9
    I went to MD Anderson in

    I went to MD Anderson in Houston.  Rented an apartment for the first three months as close as I could get.  depending on traffic it was 25 to 30 minutes to the radiation center.  And I made it!  It really wasn't that difficult until the last couple of weeks of treatment and the couple of months afterward.  

  • tanda
    tanda Member Posts: 174 Member
    #10
    drs and treatment centers

    Mary,This is from a woman (former nurse) named Tyndall, who is knowledgeable and active on Blog for a Cure

    I did a little research and it appears Lake City has some good doctors. I do know one in Gainesville, but not sure if she treats anal cancer. I would hunt for one who can do brachytherapy treatments as well as IMRT. Can she join our site or can you send her a confidential message? Here is my phone number if she would like to call xncourage her to join BFAC as well, we unfortunately have lots of experience with AC. I will email my radiation doc and see if he has knowledge of Lake City docs or if he would use Gainesville. She really doesn't want to be travelling for so long with daily treatments, and hour is too long.

    Mary, e-mail me privately (eudine2000@yahoo.com) and I will give you her cell number 

    hope this helps...

  • lizdeli
    lizdeli Member Posts: 569 Member
    #11
    Where to go for treatment

    My choice would be MD Anderson in Florida for starters.  They most likely can confer with their peers in Houston if necessary.

    Liz

  • Lorikat
    Lorikat Member Posts: 681 Member
    #12
    lizdeli said:

    Where to go for treatment

    My choice would be MD Anderson in Florida for starters.  They most likely can confer with their peers in Houston if necessary.

    Liz

    I agree With Liz..

    I agree With Liz..

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