Wednesday, September 11, 2013

CF Visits & Colonoscopies, Oh my???

I didn't realize this until recently but my CF doctor is kind of like a blogger.  No he doesn't have his own blog site but he hands out what he calls his "Communicator" every so often.  He types a double sided paper about what's going in the CF world, in his career, or any oddities that he may find.  Well in this issue I wanted to summarize some of his update because I think we could all benefit from it. 

*****Disclaimer- this is a summary from my doctor’s research and writing.  I am not taking any credit for any of these opinions or suggestions.  Again, its appropriate to consult YOUR CF care team.  I just thought it would be useful to share with all who read my blog, because I care!!!*****

His first section is titled "Routine" clinic visits.  I think most of us attend clinic on a quarterly basis.  But I on the other hand tend to go more frequent.  I was never really sure what the method for my doctor's madness was until reading this.  In fact it kind of makes some sense.   My doctor started practicing medicine way back in the early 60s. Yes, he could technically be my grandfather which is awesome.  He is so full of wisdom and knowledge.  But back in the 60s at my CF clinic patients were seen on intervals of every 6 weeks!!! At these visits the focus was on continued home treatment and antibiotics were adjusted based on patients symptoms and culture reports.  Then during the 70s and 80s my clinic reported dramatic additional progress in survival, now extending into the late teens and early 20s. 

Almost all patients, regardless of how far they lived from the clinic would come every 6-8 weeks to be seen.  Patients would even travel from various other states to my clinic.  But then there was a gasoline shortage in the early 80s and that made accessing clinic every 6-8 weeks virtually impossible. 

Even after the gasoline shortage was over, many of my doctor’s patients didn’t return to the normal 6-8 week interval.  He claims that it was due to family stresses and the cost of travel.  Routine visits started to become an exception rather than the rule. My doctor states that we now believe that the decrease in aggressive out patient evaluations is responsible for some the decrease in health as reflected in pulmonary function test results, and more persistent symptoms, in a substantial minority of patients.  Patients, who should be doing better, aren’t doing as well. 

My doctor is suggesting that we return to not only quarterly visits but to actually increase the frequency of visits from 6-8 weeks.  Basically, for all of you go to clinic quarterly we should be adding at least two more visits a year.  So make that 6 visits a year.  In fact, my doctor believes that its even more important for many patients, especially for those who are doing very very well to be seen at this frequency.  No wonder why he wants me to come back so often! For younger patients my doctor recommends visits every 6-8 weeks “to catch new infections early” when the pseudomonas may still be eradicable.  This must be one of the main reasons I have not cultured pseudomonas in a well over a year and a half.  When we discovered I had pseudomonas we treated it aggressively with aerosolized meropenum and oral antibiotics.  It is now long gone and I hope to keep it that way. 

My doctor and others at my clinic are now recommending being seen every 9 weeks.  The main reason is to achieve better health results.  Not only do you get to see your CF doctor you are also able to see the Respiratory Therapist, the Nutritionist, and the Social Worker more often.  The more you have the opportunity to be exposed to these individuals you have a better opportunity to ask your questions and build a relationship with all your CF care team. 

Also, lets not forget the more often we attend clinic for our visits, the more often we will have access to the increasing number of research studies.  These studies can actually improve a patient’s health (like the Kalydeco studies).  In some of the clinical trials you also need to have had regular out-patient visits to your CF team. 

So going to your CF clinic is more beneficial then we may actually know.  Yes, we get our throat culture, weight checked, PFT, and all the other stuff but the more we go the more positives I can see from all of this.  If you are not attending your CF clinic at least quarterly you MUST start going every 3 months.  For those of us who are going every 3 months maybe we should increase that to every 8-9 weeks.  This is just a suggestion from me and my CF care team.  But lets think about it……….I have never said to myself this “I attend my CF clinic way to much”  I think the more we go the better we all COULD be. 

Lastly, here is the last part of my doctor’s communicator.  Colon Cancer. You may be thinking what????? Honestly, when I started reading this I thought the same thing.  But here are the details. 

The incidence of cancer, mainly cancers of the gastrointestinal tract has increased in CF patients.  Almost 20 times the incidence in non-CF.  The youngest colon cancer CF patient at my clinic was close to 30 years old at diagnosis.  The youngest in the country was only 19 years old.  As we as CF population continue to survive and thrive into our 40s, 50s, and 60s, cancer threatens to become the cause of death in small percentages of the CF population. 

So what are the reasons for increased risk?  Well that is still not yet known but we need to find out why.  Possibly, the increase risk could be due to the abnormal CFTR gene in the GI tract.  But with the development of new drugs like Kalydeco that correct the actual function of the gene this may reduce or eliminate the increased risk. 

But there maybe other reasons or possibilities.  Maybe all the pancreatic enzymes CF patients take reach the colon while they are still “active”.  If they arrive active maybe they could irritate the colon cells and result in cancer.  Or perhaps digestion in CF is still not totally normal even with adequate enzyme treatment.  With this maybe some toxin in the food which should be destroyed by digestion reaches the colon and increases the risk for cancer.  Also, maybe enzymes are the problem or insufficient enzymes could be the problem.  I as a CF patient have wondered this for years if taking these enzymes will result in another problem down the road.  But I would rather gain weight than be sick due to being to thin if I could have a say in it The jury is out on this. 

How can we prevent colon cancer in CF?  Well we all know about the lovely Colonoscopy.  If we have a colonoscopy it has been shown to reduce the risk of colon cancer by 70%.  If there are benign polyps found increased frequency of colonoscopies are recommended (every 3 years).  When no polyps are found decreased frequency is recommended (every 10 years).  However, what to do in CF patients is unclear.  My clinic has reduced the aged of beginning colonoscopies to 35 years of age.  Then they recommend repeat colonoscopies every 5 years until 50 years old.  Once we hit 50 they recommend every 3 years to have a test.  My clinic has found typical pre cancerous but still benign polyps in patients at relatively young ages.  There are some gastro dr.s who have suggested that the progression from benign to malignant polyps may be quicker in CF patients.    

As for colon cancer treatment, at present surgical treatment is the same as for non-CF patients, assuming that the CF patient is otherwise a reasonable candidate for surgery.  Chemotherapy, at present, is also the same, but the effect of chemo on CF lung disease and or CF liver disease is not clear.  There are not enough patients who have undergone cancer with CF. 

So with all this said, these are recommendations by my clinic for colonoscopies.  It looks like I am less than 10 years away from that lovely test. I guess for my 35th birthday that will be my awful gift to myself.    For those, of us who are not close to 35 but may have a family history of polyps or colon cancer it may be wise to consult your CF team and see what they suggest for colonoscopy timing.  Anyone who is over the age of 35 and has yet to have a colonoscopy maybe you should consult with your CF care team at your next appointment.  Again, its better to be safe and catch a polyp before it turns into cancer.  Nip it in the bud people.

*****Disclaimer- this is a summary from my doctor’s research and writing.  I am not taking any credit for any of these opinions or suggestions.  Again, its appropriate to consult YOUR CF care team.  I just thought it would be useful to share with all who read my blog, because I care!!!*****


  1. Very interesting - thanks for sharing!!! Never thought about the colonoscopy, but that makes sense.

    1. You're welcome! Just got to make sure when we hit 35 we give ourself the gift of a colonoscopy!!! Haha

  2. I honestly had no clue about the need for a colonoscopy so early in CF patients!! thank you so much for sharing! I have been going once every 4 weeks for years. I thought that was the norm, LOL. 12 times a year I visit. we attempt to make the most out of every single visit!

    1. Soon we will need to schedule colonoscopies. I'm glad to hear how often you go to clinic keep it up.