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NCCN guidelines re. Suveillance

Marynb
Posts: 1134
Joined: Aug 2012

Well, given the week that I have had, I finally broke down and registered with NCCn to read guidelines. If I am reading this correctly, scans are NOT part of the accepted protocol for surveillance for stage 1-2 anal cancer. It appears that what is recommended is DRE and anascope every 3 - 6 months for 5 years. So, given that those are the guidlines, I have to wonder why so many here are getting scans so frequently? Recent studies have shown that repeated scans pose a greater cancer risk than had been expected. My doctors have not done scans for follow up of this cancer. I had been questioning that. Hard to argue with the NCCN guidelines.

Phoebesnow
Posts: 453
Joined: Apr 2011

My personal experience was that a pet scan was ordered when initially diagnosed.  I think a lot of doctors, facilities do this to be on the safe side.  Also had some nodules in my groin, maybe that's what prompted them or maybe mymdr old school this is the way he rolls.  On that first scan a lung nodule was found.  So in three months after tx another scan, nodule went away, but scan lit up in uterous, thinks its the fibroid, another scan in a year.  On that scan 3 areas lit up, so therefore I am sure there will be another scan this year.  I was never told what stage, I amguessing stage ii tumour just be shy of III.  My dr is very secritive

LaCh
Posts: 528
Joined: Dec 2012

If my doctor withheld information about me, from me, I'd fire him (or her) on the spot. Then again, I want to know, and not everyone does. But if I asked....  and they withheld....  I'd be out of there so fast, I'd be a blur.  I find that rather patronizing, pretty arrogant, very condescending...  that is, if one wants to know, asks, and isn't "told."  Then, again, I'm no fan of the medical profession or its practictioners in general.

Marynb
Posts: 1134
Joined: Aug 2012

I agree. I just posted below about the real importance of every patient having updated copies of all medical records. Life and death matter!

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

I still believe that staging should be done by PET scan.  My friend who is a radiologist says that many times things are picked up on a PET scan that are not seen on a CT.  He and my medical oncologist both agree that the major blast of radiation comes not from the scans but from the treatment we received.  It is very important in the beginning to know exactly where cancer is located so that an appropriate and effective treatment plan can be made.  That doesn't mean I like getting scans, as I'm sure I've had more radiation than I should have and I am hoping my next scan will be my last.  I think there is another side to those NCCN guidelines too--pressure from the insurance industry to control costs.  That's just my opinion, because that's where healthcare is headed in this country.  I just read an interesting article that addressed the predicted shortage of primary care doctors in the U.S., due to reduced reimbursement.  We are trending towards primary care being administered by nurse practitioners, which I personally find frightening.  They are fine for some things, but in some situations, I want to be seen by someone who has M.D. after their name.  The U.S. continues to drop on the list of countries ranked for quality of healthcare.

Phoebesnow
Posts: 453
Joined: Apr 2011

He is all of those things obviously, but he is able to present it in a very humble, bumbling sort of way.  Is he tryingntomprotect me, maybe so, maybe it's borderline between a 2-3.  If I pressed him he would probably tell me. If it was stage III With lymp involvement maybe I would not be as happy as I am now.  Maybe that would knock my immune system down a little more aand make the problems im having seem more momentous and I wouldn't be able to fight the ataxia . I know he is the very best here in L.A and I have trusted him with my life since the day I met him.  I know he wants the very best for me and will do any thing to get me there.  So I'm happy.  What happens in the end is the same for all of us! Knowing not knowing its the same.  I've really lived my life to the fullest, I'll have no regrets when I go.

Phoebesnow
Posts: 453
Joined: Apr 2011

Funny, when I started with my provider they sent me to a nurse practioner.  I didn't even know. I kept going to her with a patch of dry skin ,  for years I was going.   She kept telling me it was psoriasis. I said no.  3 years later I have a 3 inch wide and a fewcentimeters deep hole in my arm from skincancers.  Then I picked a dr and they keep trying to shove the NP on u every time u make an appt.  Any way the dr misdiagnosed the anal cancer for 3 years,3 DRE'S and she still insisted it was the symptomless hemorroid.  I fired her right away too.

 

Medicine is not much different from being a mechanic.  It's just hit and miss, hit and miss.  

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

I agree, hit and miss for sure!  I do not mean to put down Nurse Practitioners, as I think they definitely have a place in medicine, but when a person has a serious problem, they need to be seen by a doctor.  That said, not all doctors are created equal either--there are great ones, good ones and ones that I would not take a stray dog to.  As with most things in life, it's a crap shoot!

Marynb
Posts: 1134
Joined: Aug 2012

Phoebe, you should have access to, and copies of ,every record in your file! Cancer patients, especially, should have updated copies of your medical records. Most doctors in Mass. Have digital records online, so patients can go right into their files online through a patient portal. I learned my lesson many years ago when my doctor's office in Boston had a flood and all my records were destroyed. Those days are over. I highly suggest that every patient get a copy of their medical records. This is very important!

LaCh
Posts: 528
Joined: Dec 2012

Under HIPPA every patient has certain federal rights, including a right to receive a copy of his or her medical records. No one should have to "press" for their records or a verbal explanation of their medical condition. You should only have to ask--once.  For me, the issue isn't the particular information or condition or part of the condition that's being withheld but the attitude, the belief that it can be, should be or will be, based upon  someone else's judgment of what's best for me. That's not someone else's judgement to make, it's mine, and if I make the wrong decision, that's what life and the right to make decisions is about. Sometimes you make good ones, sometimes bad, but they're all yours to make. That said, I recognize that there are many people who don't want to know too much and prefer to give someone else--in this case, the doctor--full discretion and responsibility to divulge or not divulge, to decide without patient input what will take place. I don't endorse either approach, an all-in or all-out because everybody's different, everybody's desires, needs, requirments and personalities are different, and there is no right or wrong way, just the right way for me, or the right way for you, or the right way for the next guy.  I require full disclosure, I insist on being involved and proactive and to excercise my right to say "no" to a diagnostic or theraputic proceedure because it's my body and my life and because no one is infallable, and certainly not doctors. But most important is that you like and trust your doctor, which you do. Beyond that, you get to "fill in the blanks," as you feel appropriate insofar as what you want or don't want to know. As for medical records, I have copies of my medical records going back decades. If something is no longer relevent, it gets tossed in the garbage eventually but most often, it doesn't. Why?  Maybe I've just had more than my fair share of medical mishaps and incompetancy, but I find that I need and have needed my own copies. 

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

hey , martha,  by any chance did you print the guidelines in 2009 or10 or 11 or a while back....  I did not print them and i remember the cat scans being on there.... i think one per year until year 5.... but things do change......i started out first with a one initial pet scan and then a cat scan .... then cat scans 2 times per year for 2 years then once per year until year 5... sooo MDA is still doing them once per year until year 5,,, at least on me ... i was a stage 2 no nodes no metastisis....   sephie

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

I have the NCCN Guidelines going back to 2010--I'll post below what each year's guidelines recommend in cases of complete remission.

2010:  Every 3-6 months for 5 years--DRE, Anoscopy, Inguinal Node Palpation.  In cases of T3-T4 or inguinal node+ consider chest x-ray, pelvic CT annually for 3 years

2011:  Every 3-6 months for 5 years--DRE, Anoscopy, Inguinal Node Palpation.  In cases of T3-T4 or inguinal node+ consider chest/abdominal/pelvic imaging annually for 3 years

2012:  Same as 2011

2013:  Same as 2012

 

Note that the only change in these 4 years is between 2010 and 2011, when they changed the recommendation for T3-T4 or inguinal node+ from "chest x-ray, pelvic CT annually for 3 years" in 2010 to "chest/abdominal/pelvic imaging annually for 3 years" in 2011.

I wish I had them for 2008 (the year I was diagnosed) and 2009, but I'm sorry, I don't.

 

 

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

interesting.....i am getting ct at MDA in 10 days even tho it is not recommended ....guess it is up to the docs......i will be at 3.5 years  and was t2 n0 m0......thx   sephie

Marynb
Posts: 1134
Joined: Aug 2012

Remember, I am talking about follow up suveillance, not staging. My concern is the period after treatment. My docs have not done scans and I have wondered for some time why so many here refer to frequent follow up scans.

Marynb
Posts: 1134
Joined: Aug 2012

Martha, I really don't think that the reason NCCN guidelines do not recommend scans post treatment for anal cancer stage1-2 has to do with insurance. I think it has more to do with risk benefit analysis. Repeated scans have been shown to greatly increase the risk of cancer. If the likelihood of recurrence is low, it simply would not be worth the risk to the health of the patients, nor the cost.

I understand your thinking about insurance companies. However, in this case, I don't think that applies. Sometimes what makes good sense also makes good economic sense.

Yes, I hear my friends who are doctors complain about their reduced standard of living. One less vacation home, can't buy Mercedes for each child when they turn 16. I say break out the violins! Maybe those going into medicine in the future will be those scientists who are truly committed to improving the lives of others and not so concerned about becoming millionaires by the time they are 30! Just saying.......

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

I'm sure the primary reason that scans are no longer recommended in follow-up care is because of the reason you stated--radiation exposure.  However, call me cynical, but having worked in healthcare settings for many years, I've seen how money has a huge impact on driving the system.  So I do think the insurance industry has had a lot of influence over treatment guidelines for not only treatment of cancer but just about everything.  Healthcare in our country is about to go where it's never gone before and I find it quite scary. 

As for the salaries doctors make, yes, some of them are multi-millionaires.  My medical oncologist owns his own helicopter!  However, he not only has an M.D. but also a PhD. and is a truly brilliant man.  I'm sure it took him many years to recoup all the money his education cost him.  I don't think all doctors go into it solely for the money--I would not want a doctor like that.  I would hope that what drove them to go to medical school was the desire to help people.  That said, there are definitely some that are not worth the powder it would take to blow them up and others such as you describe.   

eihtak
Posts: 886
Joined: Oct 2011

You are right not all doctors are in it just for the big bucks, though its true that that has some influence for many. A while back I asked my oncologist to please be as honest as possible with me in telling me his recommendations for treatment whether covered by insurance or not, and let me decide if I still wanted it even though may have to pay out of pocket. So far he has followed NCCN guidelines with some adjustment to line up follow-up for breast cancer with follow-up to anal cancer. There was one breast scan that I almost was going to pay for but then he was able to make the adjustment. He is married with one young daughter and is always making donations to school functions and community activities. He is very professional and well liked and respected both at work and out of work. I didn't know him from the man in the moon a few years ago, and when diagnosed had not even had time to do much research, but sure lucked out!

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NYinTX
Posts: 64
Joined: Feb 2013
mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

Very interesting!  Thanks for posting the link.

Marynb
Posts: 1134
Joined: Aug 2012

Interesting. That is why I would like to see a single payer universal health care system.

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