NCCN Guidelines Version 1.2015

Ouch_Ouch_Ouch said:

NCCN question

Hello, mp327:

I tried to register at the site, but among the required information, in addition to my full name and address, was the name of my company and it's telephone number. How did you handle that portion of the registration process?

Thank you.

I'm sorry, but I really don't remember what I did.  I've been registered on that site for quite a few years now.  I do remember noting that I was a patient or whatever terminology they use on there, so perhaps I bypassed those questions.   If I were you, I would just put something bogus in there and see if it flies!

Ouch_Ouch_Ouch said:

I'm in!

I gave them my name and address. I filled in the company as "American Cancer Society Anal Cancer Forum" .^_^. and gave my home telephone number.

After all that, THEN they asked what category I belonged to, like cancer survivor.

I immediately looked at the "NCCN Guidelines" on "Anal Carcinoma". I really like the graphic trees for work-up, treatment, and follow-up. It makes it a lot easier for me to understand as I'm visually oriented. http://www.nccn.org/professionals/physician_gls/pdf/anal.pdf  [must register and log-in first]

This quote is from page 3 - very interesting as I always thought that clinical trials were a last resort:   

"Clinical Trials: NCCN believes that the best management for any cancer
patient is in a clinical trial. Participation in clinical trials is especially encouraged.

To find clinical trials online at NCCN member institutions, click here:
nccn.org/clinical_trials/physician.html "

I'm glad you were able to sneak in under the radar!  Yes, it is a very good site and I always encourage newbies to register and get informed. 

There have been cases where patients have taken these guidelines to their doctors and shown them that the treatment they are proposing is not within the recommended protocol.  One person on this very site was told by their physician that they would be receiving a total of 64 gys of radiation!  I gave that poster a heads-up and told them that 59 gys is the max, which is all outlined in the NCCN guidelines.  I'm not a physician, just someone who does their homework.  Obviously, their doctor had not.  Once the patient brought this to the attention of their doctor and showed them the guidelines, their treatment plan was revised and they received radiation that was NOT over the maximum amount.  Anything over 59 gys does not have any benefit and, in fact, can lead to major irreversible complications, including necrosis of the anal area, perhaps necessitating APR surgery.

It's cases just like that one that prompt me to encourage all newbies to get educated.  Register on the NCCN site and get familiar with those guidelines.  I'm glad you did just that and found the information helpful and easy to understand.

Martha

Ouch_Ouch_Ouch said:

Zap!

With a cancer on the rare side, I'm sure that there are doctors who think they know, but don't really know.

Intially, I didn't realized that this is such a rare cancer. My MDs never said how much radiation I was to get, only that I was getting the standard protocol. It wouldn't have meant anything to me, anyway. My case was presented to the radiation board of the medical center-ette and treatment was approved. I plan to ask for copies of everything on my next visits at the end of the month and from the hospital.

I didn't realize that there's a lifetime limit on radiation exposure until I read it on the http://www.analcancerhelp.info/ site you recommended and that we shouldn't go through airport scanners, but opt for the pat-down instead. It all makes perfect sense now it's been pointed out to me. And I used to be an RN in my previous life, though not involved with oncology.

Truly, thank you, mp327, for sharing your references. Big virtual kiss!

You're welcome.  I believe knowledge is power.  I didn't know the guidelines existed for some time--actually not until after I had completed my treatment.  Hell, I could have received 100 gys of radiation and never known that that amount would have killed me eventually.  Thinking back to how uninformed I was about my cancer, my treatment, etc., I feel so very fortunate that I fell into the hands of 3 great doctors who really knew their stuff--my colorectal doc, my med onc, my rad onc.  Many are not so lucky and get referred to doctors who have never seen one single case of this disease.  That's when it's particuarly important for the patient to have the knowledge that those guidelines provide.  I don't understand everything that's outlined in them--I'm not a doctor or any other kind of medical professional, just a curious cat since my diagnosis, who now tries to sponge up as much knowledge as possible about this disease.