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tests after treatment proticol

pem
Posts: 62
Joined: Mar 2013

Hello all !  can anyone let me know what the standard type of testing that should or needs to be done once treatment is complete.  i find i have to ask for things or it doesnt get done or mentioned with my doctors.   its like they think if shes not concerned than its not needed. dont get me wrong they are very nice and are open to anything i ask but i hate the thought if i dont know about what needs to be done and it gets missed .  i always feel like im falling between the cracks of the health system if im not educated to keep up or ahead of the doctors. all advice and information would be greatly appreciated.  im still in awe how strangers are stepping up and becoming one of my greatest support systems and for that i am feeling blessed.   god bless you all          pem

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

My first suggestion is to get on the website for the National Comprehensive Cancer Network, register, then go to the Anal Cancer section.  This is the best source I know for information concerning not only the treatment you are currently undergoing, but also the protocol for follow-up once you are done.  I always suggest printing out these guidelines and also printing out a copy to take to your doctor(s) so that everyone is on the same page as regards treatment/follow-up. 

Basically, these guidelines suggest in the event of complete remission (which is what we all hope for!), you should be getting digital rectal exams, anoscopy and inguinal node palpation every 3-6 months for 5 years after treatment ends.  For those who are staged at T3-T4 or had inguinal node involvement, chest/abdominal/pelvic imaging annually for 3 years is recommended.  I hope you will insist that your doctors follow these recommendations, as it sounds like you have some concerns with your healthcare system. 

Please get those guidelines--they will answer many of your questions and help you become your own best advocate!

pem
Posts: 62
Joined: Mar 2013

thx so much for the information.  i greatly appreciate it more than u know.  my husband always says that same thing about being your own best advocate.  god bless you                  pem

Marynb
Posts: 1134
Joined: Aug 2012

I went onto the nccn site and got the guidelines for both of the cancers that I had. I have now been told that the NCCN guidelines do not represent the accepted standard of care. What is a patient to do? I am so frustrated with the medical community right now. It seems that cancer treatment varies depending where you go. It is really mind boggling.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

Who told you this?  Given the fact that most newbies who sign on here and the other sites I visit are getting the same treatment I got 4 1/2 years ago, I would have a hard time believing that, at least for anal cancer, the guidelines are no longer the standard protocol.  If they aren't the standard, then what has replaced them?  I would love to know.

Marynb
Posts: 1134
Joined: Aug 2012

I would like to know too. I was told this by a specialist in reference to my other cancer, NET. I asked specifically whether I could rely on NCCN guidelines as the standard of care and was told no. Sooooo, where could a patient access the generally accepted standard of care?? No answer. Grrrrrrr. Most frustrating.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

Frustrating indeed!  I am not aware of any changes or updates in the protocol for treating and follow-up of anal cancer.  I am on 3 different support sites for this disease, including this one, and there are some very knowledgeable people on all of them who try to stay on top of any changes that come along.  To my knowledge, no one has heard of anything new or different when it comes to anal cancer.  NCCN puts out a new revision of their recommendations once a year and I have a copy of those from the last few years, including the most current.  Over those years, there have been only minor changes in the recommendations.   

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