Hi everyone, Can I join your team?

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JDuke
JDuke Member Posts: 438
edited March 2014 in Colorectal Cancer #1
Hello everyone,
My name is Joanne and I was DX'd with stage IIIB Anal Cancer in June of '08. Radiation and Chemo was very successful and all was clear until my most recent PET on Oct 27. Now I am stage IV with a single liver metastases (biopsy confirmed) in the left lobe. I am currently in the process of lining up the appropriate treatment options. I have been treated locally (Florida) at an oncology center. I am going to seek a second opinion this time. I had been considering Mayo clinic in Jacksonville, but have found that they are out of network for me. I may still pay out of pocket for the consult with them. I did find that MD Anderson in Orlando is in network for me and have read many good things on the posts here regarding their facility in Texas. Does anyone have anything to share about the Florida center? I feel like they are certainly well linked with one another, which makes me feel more comfortable.
Thanks for your stories and encouragement. I hope to be a contributor as well.
Joanne

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
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    welcome
    Hi Joanne,

    Welcome to the team! I don't have any info for you on treatment in Florida, but I did want to welcome you and let you know that we'll all be glad to support you in your journey.

    God bless,
    Lisa
  • KATE58
    KATE58 Member Posts: 299
    #3
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    lisa42 said:

    welcome
    Hi Joanne,

    Welcome to the team! I don't have any info for you on treatment in Florida, but I did want to welcome you and let you know that we'll all be glad to support you in your journey.

    God bless,
    Lisa

    Welcome Joanne!
    I'm in
    Welcome Joanne!
    I'm in pennsylvania,so I can't give you any help with doctors,
    I was diagnosed stage IV 4 1/2 years ago and have had lots of chemo
    and surgery, including liver resection.there are lots of us who collectivly
    know lots of things,so I'm sure someone can help answer your questions and will be along soon to post.
    I just wanted to say hello.
    GOD BLESS
    KATE
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #4
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    Welcome
    Welcome to our group. Even though I dont have a good answer for you I sure that somebody will be along soon with a answer to your question. But I do want to welcome you... You'll find that these people are great and a big help for any reason you need them.


    Life is funny sometimes
    Brooks
  • ittapp
    ittapp Member Posts: 383 Member
    #5
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    Welcome Joanne, I am also
    Welcome Joanne, I am also stage IV with multiple liver mets. Ask any questions you like, if I can help with what I have experienced I will be happy to share info. Welcome to the family. Patti
  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
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    You'll find, Joanne, this is a great place
    to come to for advice, knowledge,support, comfort and solace. You're not alone in your journey....Steve
  • TLG320
    TLG320 Member Posts: 167
    #7
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    Welcome!
    I'm sorry you have to be here. I'm in Baltimore so unfortunately I don't have any answers to your questions, but want to let you know that you'll find a welcoming and supportive group.

    Tashina
  • TLG320
    TLG320 Member Posts: 167
    #8
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    Welcome!
    I'm sorry you have to be here. I'm in Baltimore so unfortunately I don't have any answers to your questions, but want to let you know that you'll find a welcoming and supportive group here.

    Tashina
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #9
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    TLG320 said:

    Welcome!
    I'm sorry you have to be here. I'm in Baltimore so unfortunately I don't have any answers to your questions, but want to let you know that you'll find a welcoming and supportive group here.

    Tashina

    Hi Joanne
    Welcome....glad to have you as one of the family! I have mets to lungs and HAD liver mets. I went to MD Anderson in Texas for second opinion and although I was not impressed with the way I was treated I did get the same opinion as what was given to me at home. I think that since they are such a huge place that you just do not get the personal one on one that you get from your home town doctors. I was given a number and referred to by number always. I guess when you have hundreds of patients per day it is really the only way to stay organized. I think I got a sour taste in my mouth from them because they are so hard ball with your prognosis. I was told "I hope you are not expecting a cure... for you there is none... only treatment. You are terminal." I stopped them just before they were going to tell me when I could expect to die.... NO WAY does any one person know that information... only God. I was pretty shocked but when I talked to home town doc he basically said same thing... just in a nicer way. HOWEVER..... I will and am proving them both wrong.... KEEP THE FAITH and never give up..

    Jennie
  • steve g
    steve g Member Posts: 58 Member
    #10
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    Hi Joanne;
    I was dx in Aug
    Hi Joanne;
    I was dx in Aug 08 as stage 3 in Gainsville Fl. and chose Mayo, Jax for the surgery. Dr Metzger is the colon cancer specialist and I was very impressed with him, the Hospital and the results. There is also Cleveland Clinic in Ft. Lauderdale which is highly rated but was too far away for me. Wishing you the best with whatever decission you make. Steve
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
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    All the way across the nation....
    Univ California San Francisco has a GREAT rep, also Univ of Washington. Sorry I'm not more help...I live in So. Calif, so for me it's fairly close, I had squamous cell carcinoma, but in the rectum...my sister was treated for anal cancer at the cancer center at UW in Washington state. 2 years ago, and to this point is still NED...

    Welcome to the site! I hate how you got here, but I LOVE your spirit!!!

    Hugs, Kathi
  • lizdeli
    lizdeli Member Posts: 569 Member
    #12
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    MD Anderson
    Hi Joanne,
    I am being treated at MD Anderson for stage III Anal cancer. I went to Houston for the treatment and will be going back in 2 1/1 weeks for my follow up. My tumor is 2.5 cm, but there are two small spots in my perirectal lymph nodes, which makes me Stage III. I recommend that you reach out to MD Anderson in Orlando. Anal cancer is rare and there aren't many doctors that see cases of it. It's best to go where they are familar with it. Many people confuse colon cancer with anal cancer - they are two different cancers, different treatments and different chemos.

    I wish you the best.
    Liz
  • JDuke
    JDuke Member Posts: 438
    #13
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    lizdeli said:

    MD Anderson
    Hi Joanne,
    I am being treated at MD Anderson for stage III Anal cancer. I went to Houston for the treatment and will be going back in 2 1/1 weeks for my follow up. My tumor is 2.5 cm, but there are two small spots in my perirectal lymph nodes, which makes me Stage III. I recommend that you reach out to MD Anderson in Orlando. Anal cancer is rare and there aren't many doctors that see cases of it. It's best to go where they are familar with it. Many people confuse colon cancer with anal cancer - they are two different cancers, different treatments and different chemos.

    I wish you the best.
    Liz

    Thank you everyone for the
    Thank you everyone for the warm welcome. I appreciate the feedback on your particular treatment locations. Liz, you are right...anal cancer is rare and consequently treatment statistics are minimal. Metastases from this particular cancer is infrequent (according to my oncologist, because the standard treatment protocol is very effective) so that is also an area with little study focused on it. The fact that there is not a separate category for anal cancer on this site is evidence of it as well. I certainly am happy that there are not more people who have had to travel this road; but from my prospective, I feel that anal cancer has not gotten the attention it deserves. I will do my part to shed some light on it.
    Grateful for this connection,
    Joanne
  • z
    z Member Posts: 1,414 Member
    #14
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    JDuke said:

    Thank you everyone for the
    Thank you everyone for the warm welcome. I appreciate the feedback on your particular treatment locations. Liz, you are right...anal cancer is rare and consequently treatment statistics are minimal. Metastases from this particular cancer is infrequent (according to my oncologist, because the standard treatment protocol is very effective) so that is also an area with little study focused on it. The fact that there is not a separate category for anal cancer on this site is evidence of it as well. I certainly am happy that there are not more people who have had to travel this road; but from my prospective, I feel that anal cancer has not gotten the attention it deserves. I will do my part to shed some light on it.
    Grateful for this connection,
    Joanne

    Joanne, Have you been to the
    Joanne, Have you been to the rare cancer alliance web site, there is a group just for anal cancer. I was referred to it by Liz, and joined this month. Lots of information and support on that site. I live in FL also. I was diagnosed 4-23 Stage II anal verge cancer. I completed treatment on 6-30, and showed via biopsy and pet/ct scan NED. I will have more pet/cts in the future.

    Lori
  • JDuke
    JDuke Member Posts: 438
    #15
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    z said:

    Joanne, Have you been to the
    Joanne, Have you been to the rare cancer alliance web site, there is a group just for anal cancer. I was referred to it by Liz, and joined this month. Lots of information and support on that site. I live in FL also. I was diagnosed 4-23 Stage II anal verge cancer. I completed treatment on 6-30, and showed via biopsy and pet/ct scan NED. I will have more pet/cts in the future.

    Lori

    Rare Cancer Alliance
    Thank you Lori and Liz,
    I just submitted my information to the RCA website. I am glad to find a site that's focus is on our particular cancer.
    Warmly,
    Joanne
  • lizdeli
    lizdeli Member Posts: 569 Member
    #16
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    JDuke said:

    Rare Cancer Alliance
    Thank you Lori and Liz,
    I just submitted my information to the RCA website. I am glad to find a site that's focus is on our particular cancer.
    Warmly,
    Joanne

    RCA
    Looking forward to seeing you there!
  • JDuke
    JDuke Member Posts: 438
    #17
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    z said:

    Joanne, Have you been to the
    Joanne, Have you been to the rare cancer alliance web site, there is a group just for anal cancer. I was referred to it by Liz, and joined this month. Lots of information and support on that site. I live in FL also. I was diagnosed 4-23 Stage II anal verge cancer. I completed treatment on 6-30, and showed via biopsy and pet/ct scan NED. I will have more pet/cts in the future.

    Lori

    Congrats
    Lori,
    Congrats on completing your treatment and NED status. From what I have been told, the prognosis of complete cure of Stage II anal cancer is EXCELLENT. Happy for you!!!
    Joanne
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #18
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    Hi
    Hi, Joanne.

    I don't have any answers for you, but I just want to welcome you and say that I'm sorry you have to be here. Having said that, I think you will find the people here so helpful and supportive. Feel free to ask anything you need to!

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #19
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    tootsie1 said:

    Hi
    Hi, Joanne.

    I don't have any answers for you, but I just want to welcome you and say that I'm sorry you have to be here. Having said that, I think you will find the people here so helpful and supportive. Feel free to ask anything you need to!

    *hugs*
    Gail

    Joanne.....
    No answers here but welcome(in a sad way) to our family, you will find everything you need here......also MD Anderson in Houston is the #1 Cancer hospital in the Nation so Im sure that Floridas MD Anderson is just as good...You should be in excellent hands...Good luck to you in your journey and don't be a stranger...........Buzzard
  • lesvanb
    lesvanb Member Posts: 905
    #20
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    Welcome!
    Hi Joanne

    Welcome and sorry you had to find us but glad you found us. I was dx May 08 stage 4 rectal, one liver met, resectable at dx. I had a R lobe liver resection Oct 08. NED since, and will have a follow up PET/CT scan this week. I can't give you any particulars on anal cancer but can a bit on the liver resection stuff.

    all the best, Leslie
  • robinvan
    robinvan Member Posts: 1,012
    #21
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    Welcome Joanne
    Sorry to hear about your little setback. I'm stage 4 and have had the liver mets treated with a liver resection ('04) and RFA ('05). Currently no problems with liver.

    My folks overwinter in St. Augustine Beach. I'm a frequent visitor.

    Welcome to our family.

    Rob; in Vancouver

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