confused on diagnosis

everclearpc82
everclearpc82 Member Posts: 21
in Colorectal Cancer #1
I am a 29 year old female who found out I have a tumor in my rectum,well it turns out it is a squamous cell cancer and because it is low in my rectum they say it may be anal.I went to have a colonoscopy because of pain in my abdominal area,blood and mucus in my stools,change in my stools and a very bad pain when I would have a B.M.I go in for my P.E.T scan on 6/26 to stage this and I am making an appointment with a colon/rectal specialist at Johns Hopkins.Any words of advice,questions I should ask?Thank you so much in advance

Comments

  • Coppercent
    Coppercent Member Posts: 158
    #2
    Colorectal Surgeon
    Sounds like you are going in the right direction. You want to make sure that you are going to an experienced colorectal surgeon and not just any old surgeon. When I was diagnosed with rectal cancer, my GI doctor automatically made an appointment for me with a colorectal surgeion as well as a medical oncologist. After I had appointments with them, the physicians met and made a decision on my treatment plan. Read as much as you can and go with a list of questions you don't understand.

    I will give you one piece of advice. Make sure you sift through what you read and reveiw it all with your medical team. There are reasons they choose the different treatment plans and they stick a lot of information in the equation to decide. So the treatment for my rectal cancer may be different then your rectal cancer because our bodies are all different. Unfortunately medicine is not black and white.

    Good luck on your journey and take it one day at a time at first until the shock wears off.
  • everclearpc82
    everclearpc82 Member Posts: 21
    #3
    Coppercent said:

    Colorectal Surgeon
    Sounds like you are going in the right direction. You want to make sure that you are going to an experienced colorectal surgeon and not just any old surgeon. When I was diagnosed with rectal cancer, my GI doctor automatically made an appointment for me with a colorectal surgeion as well as a medical oncologist. After I had appointments with them, the physicians met and made a decision on my treatment plan. Read as much as you can and go with a list of questions you don't understand.

    I will give you one piece of advice. Make sure you sift through what you read and reveiw it all with your medical team. There are reasons they choose the different treatment plans and they stick a lot of information in the equation to decide. So the treatment for my rectal cancer may be different then your rectal cancer because our bodies are all different. Unfortunately medicine is not black and white.

    Good luck on your journey and take it one day at a time at first until the shock wears off.

    Thank you
    My oncologist gave me printouts on the chemo/radiation I think we will use mitomycin,infusional florouracil and radiation therapy but it is squamous so from what i have read it is rare.and thank you again coppercent i hope you are doing well
  • Lorikat
    Lorikat Member Posts: 681 Member
    #4
    Wow.... That sounds like a
    Wow.... That sounds like a repeat of my journey.. All the same symptoms (treated for IBS 1st). After much discussion I have Anal Squamous Cell Carsanoma in the rectum. And yes, there is a difference between SCC Anal and SCC Rectal. The difference is in the makeup od the cancer itself. There is even less known about SCC Rectal then Anal cancer, but is USUALLY treated using Anal SCC protocol. (I said usually because every case of cancer and every treatment can be different.) For me treatment was FU5 and Cisplatin along with radiation. No surgery.

    Explanation given to me at MDA was that it was anal cancer that grew into the rectum.. .. Were you told how far in the rectum it is located?

    Sounds like you are doing all the right things. I was staged T2NOMO. I am now 9 months post treatment and in remission/under surveillance.
    Let us known what you find out!

    Will be more than happy to help you anyway I can, so question away! Hugs from Lorie who is sorry you have to go through this.
  • tommycat
    tommycat Member Posts: 790 Member
    #5
    Hello
    Sorry to hear of your diagnosis, but am glad you found this site. You'll find helpful advice, a safe place to vent and cry, and always loads of encouragement.
    Generally for rectal cancer you'll do 5-FU chemo, radiation, then surgery for the tumor. You may or may not have a temporary ilestomy while the area heals. If the tumor is too low, you may have a permanent colostomy.
    A cancer diagnosis is scary and the treatment can be brutally tough. But keep in mind that there are many who have walked this path before you, including me.
    My only advice is to believe you can get through this. You don't have to be strong or brave.....you can be nervous and scared. Just do the treatments, one step at a time.
    Again, Welcome~
    Tommycat
    PS: There is also an anal discussion board here on CSN, and I go there from time to time because some of the treatment issues are similar.
  • everclearpc82
    everclearpc82 Member Posts: 21
    #6
    Lorikat said:

    Wow.... That sounds like a
    Wow.... That sounds like a repeat of my journey.. All the same symptoms (treated for IBS 1st). After much discussion I have Anal Squamous Cell Carsanoma in the rectum. And yes, there is a difference between SCC Anal and SCC Rectal. The difference is in the makeup od the cancer itself. There is even less known about SCC Rectal then Anal cancer, but is USUALLY treated using Anal SCC protocol. (I said usually because every case of cancer and every treatment can be different.) For me treatment was FU5 and Cisplatin along with radiation. No surgery.

    Explanation given to me at MDA was that it was anal cancer that grew into the rectum.. .. Were you told how far in the rectum it is located?

    Sounds like you are doing all the right things. I was staged T2NOMO. I am now 9 months post treatment and in remission/under surveillance.
    Let us known what you find out!

    Will be more than happy to help you anyway I can, so question away! Hugs from Lorie who is sorry you have to go through this.

    When my g.i. doctor
    When my g.i. doctor explained the tumor he held up his fingers and said it was about 1 3/4 in to 2 inches in.He said it was a low rectum tumor.I have read that with anal cancer it hurts on the outside also,but i hurt on the inside and it is not painful to touch my anus so it makes me more confused then anything,I just am not a wait around until we can figure it out I am a research anything and everything . type of person I do know that he said it was about 2 1/2 cm but I guess that dont mean much until we get all the dimensions on it
  • tommycat
    tommycat Member Posts: 790 Member
    #7
    everclearpc82 said:

    When my g.i. doctor
    When my g.i. doctor explained the tumor he held up his fingers and said it was about 1 3/4 in to 2 inches in.He said it was a low rectum tumor.I have read that with anal cancer it hurts on the outside also,but i hurt on the inside and it is not painful to touch my anus so it makes me more confused then anything,I just am not a wait around until we can figure it out I am a research anything and everything . type of person I do know that he said it was about 2 1/2 cm but I guess that dont mean much until we get all the dimensions on it

    Hi again
    I had another thought, this is somewhat off-topic, but nevertheless might be important to you:
    If you are planning on having children, ask the radiologist loads of questions of the impact of the radiation in the pelvic area.
    Hugs Everclear~
  • everclearpc82
    everclearpc82 Member Posts: 21
    #8
    tommycat said:

    Hello
    Sorry to hear of your diagnosis, but am glad you found this site. You'll find helpful advice, a safe place to vent and cry, and always loads of encouragement.
    Generally for rectal cancer you'll do 5-FU chemo, radiation, then surgery for the tumor. You may or may not have a temporary ilestomy while the area heals. If the tumor is too low, you may have a permanent colostomy.
    A cancer diagnosis is scary and the treatment can be brutally tough. But keep in mind that there are many who have walked this path before you, including me.
    My only advice is to believe you can get through this. You don't have to be strong or brave.....you can be nervous and scared. Just do the treatments, one step at a time.
    Again, Welcome~
    Tommycat
    PS: There is also an anal discussion board here on CSN, and I go there from time to time because some of the treatment issues are similar.

    thank you tommycat
    I have always been an emotional person When I watch lifetime I cry my eyes out but I have yet to cry about this cancer.My family is a bit worried about that all I want to do is research the good and bad and know I am going to beat this.I am most worried about my family it seems to affected them way more then it has me,I have already bought a book on "Bags" and I am prepared for anything and everything.
  • everclearpc82
    everclearpc82 Member Posts: 21
    #9
    tommycat said:

    Hi again
    I had another thought, this is somewhat off-topic, but nevertheless might be important to you:
    If you are planning on having children, ask the radiologist loads of questions of the impact of the radiation in the pelvic area.
    Hugs Everclear~

    thank you
    I have three children they are 6,7,9 and with my last I had a tubal ligation so no need for that talk but thank you:)
  • Lorikat
    Lorikat Member Posts: 681 Member
    #10
    everclearpc82 said:

    When my g.i. doctor
    When my g.i. doctor explained the tumor he held up his fingers and said it was about 1 3/4 in to 2 inches in.He said it was a low rectum tumor.I have read that with anal cancer it hurts on the outside also,but i hurt on the inside and it is not painful to touch my anus so it makes me more confused then anything,I just am not a wait around until we can figure it out I am a research anything and everything . type of person I do know that he said it was about 2 1/2 cm but I guess that dont mean much until we get all the dimensions on it

    Hmmmmmm.... I didn't hurt
    Hmmmmmm.... I didn't hurt on the outside either. Diarrea, mucus, blood, crampy insides.... Ribbon like stool. Pain with intercourse. My tumor was approx 5 cm and pushed on the vaginal wall. Everyone is different. I won't lie, it's a rough ride... But for me I treasure life and seek joy and happiness as I never had before because there was always tomorrow. Blessings, Lorie
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #11
    Sorry
    to hear that you've joined the club. This is a tough time for you, especially with as young as you and your children are (my daughter is a year younger than you, so we didn't need to have the "daddy is very sick" convo.) It sounds like you're very much on top of things, so just remember to ask lots of questions. Being scared is a very natural reaction and I believe that courage is being able to say "I'm afraid" and still carry on with your life. I will add you to my prayers.

    God Bless

    Doc/Ray
  • danker
    danker Member Posts: 1,276 Member
    #12
    everclearpc82 said:

    thank you tommycat
    I have always been an emotional person When I watch lifetime I cry my eyes out but I have yet to cry about this cancer.My family is a bit worried about that all I want to do is research the good and bad and know I am going to beat this.I am most worried about my family it seems to affected them way more then it has me,I have already bought a book on "Bags" and I am prepared for anything and everything.

    everclearpc83
    Stick with this forum for information! Some sites on google will give you nothing but horror stories. As survivor, we have been through it wilth all our complications, but are survivors non the less. The best of luck to you on your new journey!!!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
    Welcome
    Welcome to the group. Just want to suggest that you take someone with you when you go to your appointments as you will have a whirlwind of them and you can either forget what they said or misinterpert what was said. Take a notebook too, for questions you have before you go in and questions you might find helpful on this board, also to jot down things that your doctor has stated. Good luck on your upcoming tests and keep us posted.

    Kim
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #14
    Annabelle41415 said:

    Welcome
    Welcome to the group. Just want to suggest that you take someone with you when you go to your appointments as you will have a whirlwind of them and you can either forget what they said or misinterpert what was said. Take a notebook too, for questions you have before you go in and questions you might find helpful on this board, also to jot down things that your doctor has stated. Good luck on your upcoming tests and keep us posted.

    Kim

    I would
    Echo what Kim says about taking someone with you. I was bombarded with info and was glad my wife was with me. Between the two of us I think we've gotten most of it. And tell whoever goes with you -- don't be shy -- ask any questions either of you can think of. Best wishes, hugs, and prayers for you! Dan
  • YoVita
    YoVita Member Posts: 590 Member
    #15
    JayhawkDan said:

    I would
    Echo what Kim says about taking someone with you. I was bombarded with info and was glad my wife was with me. Between the two of us I think we've gotten most of it. And tell whoever goes with you -- don't be shy -- ask any questions either of you can think of. Best wishes, hugs, and prayers for you! Dan

    Taking someone with you to appointments
    I want to stress the above. Too much information and you're in a state of shock. My husband, Michael, lives out of state. Since I had many initial appointments with different doctors, Michael couldn't attend them all. Some of the doctors, bless them, allowed Michael to phone conference it in. One even brought out a bottle of water for my (physically) absent husband :)
  • omrhill
    omrhill Member Posts: 125
    #16
    Annabelle41415 said:

    Welcome
    Welcome to the group. Just want to suggest that you take someone with you when you go to your appointments as you will have a whirlwind of them and you can either forget what they said or misinterpert what was said. Take a notebook too, for questions you have before you go in and questions you might find helpful on this board, also to jot down things that your doctor has stated. Good luck on your upcoming tests and keep us posted.

    Kim

    And don't venture too far
    And don't venture too far into the internet until you have your head more firmly around some of this information. There are some very extremely and scarey places on the web. This site is a great first step. Good luck to you.
  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #17
    omrhill said:

    And don't venture too far
    And don't venture too far into the internet until you have your head more firmly around some of this information. There are some very extremely and scarey places on the web. This site is a great first step. Good luck to you.

    Internet
    Education, I feel, is key to my recovery/quality of life. I suggest that it is best to be sure and pass any thing you find on the internet past your Onc or GI while you get more familiar with sources and credibility.

    There is a wealth of helpful information but unfortunately there still snake-oil salesman too.

    Best of everything to you on this journey.
  • WhatsA_Mom2Do
    WhatsA_Mom2Do Member Posts: 46
    #18
    Very sorry to hear of your
    Very sorry to hear of your diagnosis but you are in the right place for support and information. I can't remember if it was this site or Colon Club, but on one of them someone posted a very inclusive list of questions to ask your oncologist. Even for me, an Oncology RN who was in a complete fog when my son was diagnosed, I found the questions to be great and things I would not have thought of on my own in the midst of our storm. If you put "questions to ask" in the search bar, it should come up. God Bless and all the best to you on your journey! Dee

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