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NED despite symptoms

sephie's picture
Posts: 646
Joined: Apr 2009

yea, just got back from MDA and NED. even tho I have bleeding after BM every week, i have bumps and inflammed areas around my anus. i still have pain after sitting or fast walking .. I am 3 years post tx in 4 months .. so this might help others that still have problems and are scared that it is coming back. i had a CT with barium up the anal area and they saw nothing. i had one DRE. i do not have a procto until sept. i did ssk about the protocol (my doc helped establish it) because i am not getting anoscopes every 3-6 months. they say it is individually determined and that after 2 years of NED , MDA does not do them if stage 2 and there was no lymph node involvement. sephie

lizdeli's picture
Posts: 567
Joined: Jul 2009

Sephie congratulations on your NED news, I am so happy for you. I'm sorry about all side issues you are having though. I think everyone responds differently to the radiation treatment and it sounds like it really took a toll on you. I hope it gets better.

I'm still on a protoc but every 6-9 months. But I was stage llla so I can understand why. I still go back every 3 months, once for general check ups and then the 2nd 3months for scans which means my scans are every 6 months for now. We'll see what happens when I reach my 3 year mark this year.

Were the doctors able to give you and advice about the bleeding etc?

My next appt is May 29th with Dr. Chang, then Sept. 17th for Dr. Eng and scans. Maybe we can coordiante an appointment and meet in person.

Posts: 563
Joined: Apr 2011


sephie's picture
Posts: 646
Joined: Apr 2009

docs say probably my new normal, if i can deal with it. due to radiation .. need to take more immodium when diarrhea hits. told them i was still afraid of constipation due to pain. but they say take colace (stool softener, which i already do). i will know more when i see the colorectal surgeon (skibber) in 6 months with procto. hard for me to chge appts due to my hubby working . we usually do a friday and/or monday appt. but i am there on May 21, if all stays same. love your photo. i do not know how to put a photo on here. thx for good wishes sephie

RoseC's picture
Posts: 558
Joined: Jun 2011

Thanks for posting! It's great to hear that even thought there may be odd happenings occurring it doesn't mean the 'worst'. Thanks!

mp327's picture
Posts: 4121
Joined: Jan 2010

Congratulations on getting all good news on your exams! I suspect the bleeding is radiation proctitis, as has been discussed previously. I think it's just something we have to get used to, though it can still be scary. I hope you have a great weekend and can relax a bit knowing that all is well.

AZANNIE's picture
Posts: 443
Joined: Mar 2011

Congrats on NED, sephie! He's a great friend to have!!!

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