Follow up care after completing Radiation and Chemo, What to expect?

kirby77

I am not totally sure what to expect for follow up care after completing Chemo and Radiation. Yesterday, I saw a colorectal doctor to inject a hemorrhoid(sclerotherapy). He did not perform my excision of the squamous cell mass, he said I would need to undergo a 4 point biopsy in a few months. The operating surgeon told me I would only need a DRE for follow-up. What exactly is the standard of care for follow-up? How is the determination of NED made?

I completed treatment Oct.2nd, I follow up with the orignal surgeon in 3 months.

RoseC

Hi Kirby
How're you feeling? The two weeks following treatment can be rough - hope you're doing well.

I had biopsies at six months out. Other than that, the only things I can remember are 1) a Catscan, and 2) monthly appointments with oncology and colo-rectal (DRE). I had some other issues so was also seeing other doctors but relating to the anal cancer, only colo-rectal and oncology. Now at 4 YEARS OUT and doing well - some walking difficulty and the occasional runs, but other than that doing well.

Good luck, and congratulations for finishing treatment. My best to you.

mp327

Hi Kirby--
Congrats on being done with treatment! I hope you are doing well and the healing is progressing. As for follow-up, I am going to post the information that is in the NCCN guidelines for follow-up in the case of complete remission (which I believe you will have!).

Evaluate in 8-12 weeks (post-treatment) with exam & DRE

With complete remission:
Every 3-6 months for 5 years--
*DRE
*Anoscopy
*Inguinal node palpation
For T3-T4 or inguinal node positive, consider chest/abdominal/pelvic imaging annually for 3 years

These are from the latest update, which was just released last week. I hope this answers your questions regarding follow-up.

As for how NED is determined, that usually happens after a clean scan, which your doctor may order for you. However, the post-treatment scan should not be done until perhaps as long as 6 months after treatment to avoid false positives, which can occur from radiation damage or radiation still working. In a footnote in the NCCN guidelines, it is noted that persistent disease may continue to regress even at 26 weeks post-treatment, which leads me to believe that radiation can continue to work for that length of time.

Some doctors do post-treatment biopsies. However, my personal experience has been that my doctor does not do them unless there is something suspicious seen, due to possible difficulty in healing after radiation.

You will learn that doctors are all over the place when it comes to follow-up and what they do or not do.

I know you will get good news in your upcoming follow-up. For now, try not to worry and just focus on healing and taking care of yourself.

Marynb

Congratulations on being done!
Hi Kirby,

So glad you finished your treatment and I hope you feel stronger every day! I have DRE and scope every 12 weeks for this cancer. I hope you give yourself time to recover and get your strength back. Stay well.

Mary

kirby77

Marynb said:

Congratulations on being done!
Hi Kirby,

So glad you finished your treatment and I hope you feel stronger every day! I have DRE and scope every 12 weeks for this cancer. I hope you give yourself time to recover and get your strength back. Stay well.

Mary

Hi, Martha, Rose and Mary and All, update on recovery
Thanks for your responses, it's good to have the been there perspective. My two docs gave conflicting messages. I'll seek additional clarification from the med/onc.

I completed my radiation on Oct.2nd, as many of you know the last half of my radiation was complicated by very painful proctitis. I took a break prior to the last 9 rad treatment, which was not planned but in the end helpful.

I've been using Proctofoam HC routinely, in addition sitz bathes. Finally, after having a hemorrhoid treated the pain is about 80% better. It has to be good enough, as I go back to work on Monday 10/22. I am anxious and very worried about having quick access to a restroom. I don't think I could stand to be humilated if were to have an accident.

I now rarely take a Vicodin, if I do it's at night. My BM's are still small, skinny and far from normal, and I have 3-5 per day. Today better, just 2 plus a small one at the end of the day. I have no idea when things are going to normalize.

I am able sit, be out of bed during the day, take a couple of walks per day, so I think I am ready to go back to work. My job requires me to round on my staff and sit at desk or attend meeting outside of my work area. I'll let you know how my first week progresses, wish me luck.
All the best and thanks for the mucho advice.
Kirby

Marynb

kirby77 said:

Hi, Martha, Rose and Mary and All, update on recovery
Thanks for your responses, it's good to have the been there perspective. My two docs gave conflicting messages. I'll seek additional clarification from the med/onc.

I completed my radiation on Oct.2nd, as many of you know the last half of my radiation was complicated by very painful proctitis. I took a break prior to the last 9 rad treatment, which was not planned but in the end helpful.

I've been using Proctofoam HC routinely, in addition sitz bathes. Finally, after having a hemorrhoid treated the pain is about 80% better. It has to be good enough, as I go back to work on Monday 10/22. I am anxious and very worried about having quick access to a restroom. I don't think I could stand to be humilated if were to have an accident.

I now rarely take a Vicodin, if I do it's at night. My BM's are still small, skinny and far from normal, and I have 3-5 per day. Today better, just 2 plus a small one at the end of the day. I have no idea when things are going to normalize.

I am able sit, be out of bed during the day, take a couple of walks per day, so I think I am ready to go back to work. My job requires me to round on my staff and sit at desk or attend meeting outside of my work area. I'll let you know how my first week progresses, wish me luck.
All the best and thanks for the mucho advice.
Kirby

Good luck, Kirby
Good for you! You got through this battle! I hope that you have a good week at work. You are heading back sooner than I did, so take it easy on yourself. I suggest that you bring Immodium with you to work for the days that you need it. Of course, you will have to watch what you eat. When I went back to work, I had good days and bad. For many months I only ate soup or hummus with pita bread at work to avoid diarreah. The hummus will give you better bowel movements and less diarreha. If you find that you need accomodations, don't be afraid to ask. I wish I had asked.
Hang in there! Life is just going to get better and better now!

Big Hugs!

Mary

mp327

kirby77 said:

Hi, Martha, Rose and Mary and All, update on recovery
Thanks for your responses, it's good to have the been there perspective. My two docs gave conflicting messages. I'll seek additional clarification from the med/onc.

I completed my radiation on Oct.2nd, as many of you know the last half of my radiation was complicated by very painful proctitis. I took a break prior to the last 9 rad treatment, which was not planned but in the end helpful.

I've been using Proctofoam HC routinely, in addition sitz bathes. Finally, after having a hemorrhoid treated the pain is about 80% better. It has to be good enough, as I go back to work on Monday 10/22. I am anxious and very worried about having quick access to a restroom. I don't think I could stand to be humilated if were to have an accident.

I now rarely take a Vicodin, if I do it's at night. My BM's are still small, skinny and far from normal, and I have 3-5 per day. Today better, just 2 plus a small one at the end of the day. I have no idea when things are going to normalize.

I am able sit, be out of bed during the day, take a couple of walks per day, so I think I am ready to go back to work. My job requires me to round on my staff and sit at desk or attend meeting outside of my work area. I'll let you know how my first week progresses, wish me luck.
All the best and thanks for the mucho advice.
Kirby

Hi Kirby--
I'm so glad to hear that your pain is greatly improved--may it be 100% better soon! I want to wish you all the best with your return to work today. May the day go smoothly with you with no problems. I understand your anxiety and I hope you will always have easy and quick access to a restroom should the need arise. The reason your stools may be thin at this point is because you may have some anal stenosis, which is a narrowing of the anal canal, due to the radiation. It should improve in time. After 4 years, I usually still have multiple BM's during the day, but they are at least without urgency 99% of the time. Time really is the best healer after this treatment. I'm glad you are able to go on walks. The exercise is good to maintain flexibity in your hips, which have taken a hit from the radiation. Stretching exercises would also be good.

I wish you all the best as you go back to work, which is a big step in returning to normal life. I hope it goes well and you end the day with confidence that your life is once again going to be normal.

mxperry220

kirby77 said:

Hi, Martha, Rose and Mary and All, update on recovery
Thanks for your responses, it's good to have the been there perspective. My two docs gave conflicting messages. I'll seek additional clarification from the med/onc.

I completed my radiation on Oct.2nd, as many of you know the last half of my radiation was complicated by very painful proctitis. I took a break prior to the last 9 rad treatment, which was not planned but in the end helpful.

I've been using Proctofoam HC routinely, in addition sitz bathes. Finally, after having a hemorrhoid treated the pain is about 80% better. It has to be good enough, as I go back to work on Monday 10/22. I am anxious and very worried about having quick access to a restroom. I don't think I could stand to be humilated if were to have an accident.

I now rarely take a Vicodin, if I do it's at night. My BM's are still small, skinny and far from normal, and I have 3-5 per day. Today better, just 2 plus a small one at the end of the day. I have no idea when things are going to normalize.

I am able sit, be out of bed during the day, take a couple of walks per day, so I think I am ready to go back to work. My job requires me to round on my staff and sit at desk or attend meeting outside of my work area. I'll let you know how my first week progresses, wish me luck.
All the best and thanks for the mucho advice.
Kirby

New Norm
You may have a new BM norm. I know in my situation before treatment I had 1-2 BMs daily. I now have 3-4 BMs daily. I take 3 immodium daily in the mornings after my first BM. I am 3 years 9 months post treatment. I have been taking immodium since 2008. Try not to stress out at work as stress seems to bring on an urgency for BMs for me.
Mike

kirby77

mxperry220 said:

New Norm
You may have a new BM norm. I know in my situation before treatment I had 1-2 BMs daily. I now have 3-4 BMs daily. I take 3 immodium daily in the mornings after my first BM. I am 3 years 9 months post treatment. I have been taking immodium since 2008. Try not to stress out at work as stress seems to bring on an urgency for BMs for me.
Mike

First week down, wasn't terrible, but very tiring
Sorry for the disconnect. First week, hectic preparing for a big survey. I actually worked the weekend too. Bowels unpredictable and proctitis improved, but BR is not too far away. Tired and right to bed after work. I'll let you know how week two progresses. Slogging along. Thanks to all.
kirby

Marynb

kirby77 said:

First week down, wasn't terrible, but very tiring
Sorry for the disconnect. First week, hectic preparing for a big survey. I actually worked the weekend too. Bowels unpredictable and proctitis improved, but BR is not too far away. Tired and right to bed after work. I'll let you know how week two progresses. Slogging along. Thanks to all.
kirby

Good for you, Kirby.
I hope yiur second week goes well too. Take good care of yourself and I am glad you are going to bed when you get home. It must feel good getting back into the swing, but don't push yourself too much. Hang in there! You are really doing so well! That is great news!

Hugs.

Mary

mp327

kirby77 said:

First week down, wasn't terrible, but very tiring
Sorry for the disconnect. First week, hectic preparing for a big survey. I actually worked the weekend too. Bowels unpredictable and proctitis improved, but BR is not too far away. Tired and right to bed after work. I'll let you know how week two progresses. Slogging along. Thanks to all.
kirby

Hi Kirby--
I believe the first couple of weeks following treatment are about the worst, so I think you'll be noticing the beginning of some big improvements by this time next week. Continue to get plenty of rest and don't forget to eat enough protein to promote healing. If you can manage it, a little light exercise will help you build up a little energy. A short walk can do wonders, even if it's just to the mailbox and back a few times. Wishing you a better week ahead.

kirby77

mp327 said:

Hi Kirby--
I believe the first couple of weeks following treatment are about the worst, so I think you'll be noticing the beginning of some big improvements by this time next week. Continue to get plenty of rest and don't forget to eat enough protein to promote healing. If you can manage it, a little light exercise will help you build up a little energy. A short walk can do wonders, even if it's just to the mailbox and back a few times. Wishing you a better week ahead.

almost four weeks later after returning to work
Things are going well. My energy is improving and the proctitis pain is far improved. Work has been exhausting, and I have definitely overdone it. Catching up on rest this weekend. So glad to be returning to normalcy after completing my last radiation treatment on Oct.2nd.
Wishing everyone a Happy and Peaceful Thanksgiving. Much for me to be thankful about, and this discussion board on the top of my list.
kirby

Marynb

kirby77 said:

almost four weeks later after returning to work
Things are going well. My energy is improving and the proctitis pain is far improved. Work has been exhausting, and I have definitely overdone it. Catching up on rest this weekend. So glad to be returning to normalcy after completing my last radiation treatment on Oct.2nd.
Wishing everyone a Happy and Peaceful Thanksgiving. Much for me to be thankful about, and this discussion board on the top of my list.
kirby

Hi Kirby
I am so glad you are doing well. Be careful not to wear yourself out! Happy Thankskgiving! Yes, we have each day to be grateful for! Life is good!

Hugs

Mary

mp327

kirby77 said:

almost four weeks later after returning to work
Things are going well. My energy is improving and the proctitis pain is far improved. Work has been exhausting, and I have definitely overdone it. Catching up on rest this weekend. So glad to be returning to normalcy after completing my last radiation treatment on Oct.2nd.
Wishing everyone a Happy and Peaceful Thanksgiving. Much for me to be thankful about, and this discussion board on the top of my list.
kirby

Hi kirby!
I'm glad you are seeing lots of improvement and feeling much better. It will take awhile for your energy level to come back up, so just rest when you can. I hope you have a wonderful Thanksgiving!