International Anal Neoplasia Society Conference

mp327
mp327 Member Posts: 4,440 Member
in Anal Cancer #1

Before I get to the main topic of this post, I wanted to update my status.  I saw my colorectal doctor this morning for my 6-month follow-up, including DRE and anoscope, and in her words, “I can’t tell you were even radiated”--trust me, I was!!  That is the first time in 6 ½ years she’s ever said that, so I was very happy!  She also said no colonoscopy this year, which was good to hear.  I was prepared to argue strongly against that, so fortunately, it wasn’t necessary.  I am good for another 6 months until the next follow-up.

Now, on to other really big things!  I received a call from Justine Almada of the HPV & Anal Cancer Foundation last week regarding the upcoming annual conference of the International Anal Neoplasia Society to be held in Atlanta on March 13th. through the 15th.  She was hoping to find local AC survivors to speak during Saturday’s Community Presentations portion of the schedule and my name surfaced.  I really didn’t have much time to think about it and said “yes.” 

Not ever being comfortable with public speaking, I questioned my commitment to her after I hung up the phone.  I am not only going to give a public presentation to doctors and other healthcare professionals, but the topic is Anal Cancer!  Oh lawd!  The good news is I am to tell my story in my own words, so needing to spew out all sorts of medical terms, etc., is not expected, or at least that is my understanding!

I have been given 10 minutes for my part of the 90-minute session.  I thought 10 minutes would be a piece of cake, as I usually have no problem talking for that long—just ask my husband.  LOL!  As I found out when I began writing it up, that can be a very long time, especially when I am nervous, which tends to make me talk faster.  Hopefully, I won’t sound like an auctioneer! 

I have had to dig out the journal I kept during treatment and for the first three years or so afterwards.  It has been a somewhat painful trip down memory lane, as it all becomes so vivid again when I read what I wrote at that time.  However, I keep reminding myself that not being able to recall all of those details off the top of my head is good, as it means I’ve forgotten a lot of the bad stuff.  I am still fine-tuning my presentation, but it is close to being finished and, if I don’t talk too fast, should take right around 10 minutes.  After I have attended this part of the conference and spoken, I will post my presentation for all of you to read and you can critique!

One of the doctors who is speaking at this event is Dr. Catherine Eng from MD Anderson.  I know many of you are familiar with her, some more than others.  She will give a presentation on Saturday afternoon titled “New Approaches to Treatment of Anal Cancer,” which I would really like to attend.  I asked Justine about this and she is trying to get me a “free pass” to hear Dr. Eng, since I am not a member of this organization.

As I said above, I have never been comfortable with nor have I done much public speaking.  However, I know that several of my AC friends have done so, appearing on television shows and giving presentations to groups in their communities.  So, I think I can do this!  When I saw my colorectal doctor this morning, I told her I was speaking at this conference, and she didn’t hesitate to tell me how proud she was of me and that I would do a great job.  Her vote of confidence means a lot to me.  She also stated that perhaps she would check into attending, at least Saturday’s presentations.

I am doing this because I think it is very important for all who will attend to hear survivor stories such as mine.  I want to make several points.  1)  Misdiagnosis is common and this disease needs to get on the radar of healthcare professionals; 2) Treatment is grueling; 3) Support from other survivors is priceless; 4) Both awareness and HPV vaccination rates need to increase.  I don’t know if anything I say will make a difference, but it’s certainly worth a try. 

Honestly, I wish I had gotten an invitation from the International Ice Cream Connoisseur’s Society to speak at their conference instead, as I am a total expert when it comes to frozen treat consumption.  It would be a much easier topic to speak on, to be sure.  However, no such luck, so butts it is!  Wish me luck and send lots of positive vibes my way on March 14th., as I will need all the help I can get!  Thank you in advance!    

Martha

Comments

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #2
    Wow, Martha

    What an honor!  You will be a great representative.  I am so glad you are doing it and look forward to hearing (reading) what you have to say.  Best wishes!

    Tracey

  • qv62
    qv62 Member Posts: 434 Member
    #3
    mp327

    Congrats on both your good results with the doctor visit and your invite to speak. I am so excited for you and can't wait to hear all about your experience. You will certainly do us all justice and do us all proud ! I will be sending extra good vibes on the 14th for sure ! I think two of my doctors (colo-rectal surgeon and radiologist) will be there since I had appts with both of them that week and was called to change my appts due to a conference. If you bring home a program let me know I'd love to see if they are listed since you'll be back before my rescheduled appts. This must boe our invite week to speak as miune is on a much much smaller scale but I was asked to speak at the Relay for Life Captains meeting next week on "why we relay" I am a little nervous as well but unlike you have not begun to prepare lol

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    qv62 said:

    mp327

    Congrats on both your good results with the doctor visit and your invite to speak. I am so excited for you and can't wait to hear all about your experience. You will certainly do us all justice and do us all proud ! I will be sending extra good vibes on the 14th for sure ! I think two of my doctors (colo-rectal surgeon and radiologist) will be there since I had appts with both of them that week and was called to change my appts due to a conference. If you bring home a program let me know I'd love to see if they are listed since you'll be back before my rescheduled appts. This must boe our invite week to speak as miune is on a much much smaller scale but I was asked to speak at the Relay for Life Captains meeting next week on "why we relay" I am a little nervous as well but unlike you have not begun to prepare lol

    qv62

    I think it's great that you'll be speaking at your Relay for Life Captains meeting!  We will have different audiences, but at least our stories will be heard!  Good luck with your presentation!  Thanks for the good vibes on mine!

  • Bjc57
    Bjc57 Member Posts: 24
    #5
    Great opportunity!

    Martha,

    That is such a wonderful opportunity for you to get the word out to the ones on the frontline of treatment! Although I am relatively new to this forum, I have consistently seen and been impressed by, not only your knowledge of the subject, but the compassion and warmth you exude with others on this difficult journey. I have no doubt that you will literally blow them all away with your presentation from a survivor's standpoint and lay person's desire to spread the word to erase the stigma, increase prevention and improve treatment of a very frightening disease. Break a leg, my dear!

    And a BIG congratulations on your recent followup--something we all pray for and hope to celebrate with you someday!

    Becky

  • sephie
    sephie Member Posts: 650 Member
    #6
    yea yea yea

    martha, sooooo great that you will speak to the group.....(also, congrats on your great check up) .....finally someone who can tell the real story to people that need to understand all the pain and suffering not only during tx but also for years after and for some , forever,--the  side effects that affect our every day living ---side effects that never go away.....nothing is the same after this tx..... you will be a wonderful rep for us.... you are sooooo appreciated!!!!! thankyou for saying "yes'.......sephie....PS  i am one of those who was misdiagnosed for over a year by a proctologist!!!! finally went to a colorectal surgeon who had seen only 3 cases but got it right.....

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #7
    Post Treatment Side Effects

    Martha,

    It is great to hear you are speaking on hehalf of us anal cancer survivors.  You have been such a positive motivator on this site.  You and I were treated for anal cancer around the same time.   I was wondering if you plan to include some of the common post treatment permanent side effects we survivors have.  I honestly do not think doctors have an awareness of what some the anal cancer survivors tolerate for the rest of their lives.

    Thanks,

    Mike

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    mxperry220 said:

    Post Treatment Side Effects

    Martha,

    It is great to hear you are speaking on hehalf of us anal cancer survivors.  You have been such a positive motivator on this site.  You and I were treated for anal cancer around the same time.   I was wondering if you plan to include some of the common post treatment permanent side effects we survivors have.  I honestly do not think doctors have an awareness of what some the anal cancer survivors tolerate for the rest of their lives.

    Thanks,

    Mike

    Mike

    Yes, I plan to include some comments about long-term side effects and quality of life issues that we face post-treatment.  I think it's important for the healthcare community to understand that the end of treatment does not mean life returns to its previous form of normal.

    Martha

  • jcruz
    jcruz Member Posts: 379 Member
    #9
    what an honor

    Martha

    I am so pleased for you and totally understand the worry about public speaking.  When I have to anything like this at work (to people I already know and in small numbers) I still get really worked up ahead of time.  I find that once I begin it's okay - I am talking about something I know. So, I hope this will happen for you too.  And I got a twinge of reliving awful memories as you mentioned your painful trip down memory lane.

    Thank you for doing this.  Let us know how it goes.  Lots of good vibes and support coming your way.

    Janet

  • z
    z Member Posts: 1,414 Member
    #10
    Martha

    Martha, I can think of no other AC survivor that I would want speaking about the dx and tx of anal cancer than you.  You are always there to support us all.  I know you will do a great job.  I will be thinking of you 3-14.  Lori Laughing

  • pializ
    pializ Member Posts: 508 Member
    #11
    z said:

    Martha

    Martha, I can think of no other AC survivor that I would want speaking about the dx and tx of anal cancer than you.  You are always there to support us all.  I know you will do a great job.  I will be thinking of you 3-14.  Lori Laughing

    Martha

    I consider you to be the matriarch of this select group, and can't think of anyone who could 'put our cause' more eloquently. I know you will do a fine job. Pleased for you to be our ambassador 

    Liz

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #12
    mp327 said:

    Mike

    Yes, I plan to include some comments about long-term side effects and quality of life issues that we face post-treatment.  I think it's important for the healthcare community to understand that the end of treatment does not mean life returns to its previous form of normal.

    Martha

    I Figured

    I figured you planned to include some of our post treatment permanent issues.  It seems the doctors are not understanding of some of the challenges we face for the rest of our lives.

    Thanks  for all you do.

    Mike

  • Jeff1
    Jeff1 Member Posts: 15
    #13
    Good luck to you Martha and

    Good luck to you Martha and thank-you for representing everyone touched by this.

     

    Jeff

  • qv62
    qv62 Member Posts: 434 Member
    #14
    mp327

    Please, please, please, tell us how everything went. I'm sure you were amazing ! Can't wait to hear all about it ! Did you bring back a program ?

  • qv62
    qv62 Member Posts: 434 Member
    #15
    qv62 said:

    mp327

    Please, please, please, tell us how everything went. I'm sure you were amazing ! Can't wait to hear all about it ! Did you bring back a program ?

    mp327

    sorry for the post, for some reason I just saw you posted your speech. I didn't see it when I posted this. It was fabulous !!!!

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