Question for 5 year Survivors

pluckey

I have been NED for 5 years after being Stage 4 and not expected to make it thru chemo.   YAY

I feel like I am kind of in this purgatory of being far away from all the bad stuff but one foot in the I had Cancer will it come back realm.  Know What I mean?

 

Anyhoo - for those of you on the mend, can you share your plan of care?  Is it colonoscopy every year and blood one a year?

I am not clear at all on how I should manage the "after" and  not be complacent

 

Thanks!

 

 

Peggy

Trubrit

Every three years

Hi. I'm not five years out but my GI & Onc & Rad Onc want me to have Colonoscopies every three years.  Suits me fine. Hate the things. 

Of course, they all seem to do it their own way, so it will be interesting to see What schedule they have you on. 

Sue - Trubrit

ron50

Hi Peggy

     My surgeon did not turn me loose till the end of year six. All the time up till that point he cosidered me a risk of recurring. At six years he declared that I was cured of that cancer but I had fulfilled the criteria to develop colon cancer from a polyp once so If I did not remain vigilant I may well develop new cancers. The end of year six was my final ct scan. Again my surgeon warned me that scans are not benign and they are the equivalent of a whole lot of xrays. All that radiation is not good for cells. I have had 10 colonoscopies during and since cancer. They have found and removed quite a few polyps in that time (over 16 years) . Only once did a polyp show signs of displaysia or pre cancerous changes. I have varied from one to three years between scopes. My doctors do not bother with blood tests for cea as at the height of my cancer it was only 2.8 and nowdays sits at less than 0.5. The other thing that you need to do is to develop a health plan. I may not have cancer but I have a lot of problems that have arisen since treatment. Beware of arthritis and joint pain. Early treatment is essential. I have problems with auto-immune disease. One is psoriatic arthritis, another is nephrotic syndrome of the kidneys. Poor tretment options put me into type two diabetes. Another common problem is neuropathy and trying to find something that works for you. I guess the point I am making is that although you may never want to see another doctor as long as you live it really pays to have regular health checks at least once or twice a year. All the best Ron.

Randy33

Testing Schedule

First of all congrats on 5 years NED. I am Stage 4 and 6+ years NED. After 5 years NED I went from quarterly CEA checks and yearly CT scan to just a semi-annual CEA check. Also since my last colonoscopy showed no polyps I am on a 5 year schedule for those. After 7 years NED my doctor said I could reduce down to yearly CEAs.Once I hit the 10 year mark I'm done testing.

          Randy

abrub

At 8 years out, Stage 4 appendix cancer

I have Colonoscopies every 3 years.  I hope at 10 years out to move them to 5 years, but...  I also have MRIs at 18 month intervals; CEA every 9 months.  At 10 years, routine scans will stop.