Hi everyone, Can I join your team?
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
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Welcome Joanne!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
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
KATE0 -
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
Brooks0 -
Hi JoanneTLG320 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
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..
Jennie0 -
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. Steve0 -
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, Kathi0 -
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.
Liz0 -
Thank you everyone for thelizdeli 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 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,
Joanne0 -
Joanne, Have you been to theJDuke 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 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.
Lori0 -
Rare Cancer Alliancez 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
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,
Joanne0 -
Congratsz 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
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!!!
Joanne0 -
Joanne.....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
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...........Buzzard0 -
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, Leslie0 -
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 Vancouver0
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