Final days...

All good questions!
Hi Gulamin. You've asked lots of questions and I'll try to give you my take. First of all, I'm glad you are nearing the end of treatment and seem to be holding up pretty well. I certainly hope that will continue for the remainder. The booster treatment may affect your anal area a little more intensely than the previous treatments. My last 5 treatments were boosters, aimed only at the anal area and they did some damage. Since you are only getting one, hopefully, it will not be as bad for you.

My follow-ups have consisted of anoscopes and digital rectal exams by my colorectal doc every 3 months, several PET scans, a CT scan and yearly colonoscopies. I have never had an anal ultrasound, but did have a biopsy of anal warts that were removed last September, which were benign. My medical oncologist is a strong believer in PET scans, despite the questions concerning after effects. I am supposed to have another one in early February, but it hasn't been scheduled yet.

We all go through the anxiety of waiting for test and scan results. You will be no different. I am 28 months out of treatment and still get very anxious. I am already thinking ahead to my upcoming visit to the colorectal doc and the PET scan in Feb. It's really impossible not to, but I will say it gets easier as time goes on. In between all of those tests and exams, I live my life pretty much as I did before. I am able to eat almost everything without consequences, I enjoy a cocktail at least once a week, I have returned to running and weight lifting and am at my previous levels or better, and I don't think of cancer 24/7 anymore. I have learned to really appreciate each and every day and to enjoy the simple things in life. I think cancer has made me want to simplify my life as much as possible. I don't worry about the stuff I can't change, I no longer obsess over having a spotless house, if I feel like doing nothing sometimes, I do it with NO guilt. This is not the person I was before cancer, but I feel that I'm a much better person now.

The one thing I have really enjoyed doing since having cancer is meeting new people through forums such as this and sharing my experience with them. I wish none of us ever had to meet this way, but isn't it a blessing to have others to talk to who have been there. If ever there was a purpose in my life, I think this is it. As for breathing easier after 5 years, I'm not there yet, so I really can't say. I believe that I'll never completely be rid of thoughts of cancer, but they will no longer dominate my thoughts. Trust me, it does get better with time. Patience, patience!

Life After
I also got the extra zaps of radiation, I didn't notice burning any worse of the skin, but an immense drain on my body.

I had a lot of anxieties waiting for everything to come together to find out if the cancer was gone. They did do another colonoscopy and due to scarring did do more biopsies. I also had a PET scan done. As for recovery, I just truly felt tired, still was painful from the radiation and remained on pain meds for a while. I think the first thing I noticed that was a huge bother was that my hips hurt so bad, which they hadn't hurt through treatment. My Oncologist told me this is radiation recall and that it would get better, which it did.

As time has gone by I don't think of the cancer like I use to. Sure at first I was scared to even go to the bathroom for fear it was going to come back. I however found if I focused on how good I felt over all, how my weight was increasing along with my energy level that I was able to begin to remind myself that with the better I felt the less likelihood that it was coming back. It seemed to me that going from every three months for follow ups to every 6 months went quicker then I expected, and truly I went through my one year CT scan with little to no anxiety basically due to my focus on my over all progress in good health.

There are times when I do think about it, and hope it doesn't come back, I think that is normal of any cancer patient no matter what type of cancer you have had. Over all though my life is good. I believe this experience has made me more aware of what is important and to let go of all the little things that I use to let ruin my day or mood. Now I truly just want to live life enjoying all its greatness, beauty and all the love I have from family and friends.

Gulamin said:

5 more days to go
and I am truly counting... almost done. Let the healing begin. All of your words ring true.

When did they do your first PET scan and biopsy/colonoscopy? Some people say 6 weeks, my doc says 8 weeks...

It sounds like you are doing
It sounds like you are doing great with your treatment, better than many of us. I barely finished, my son almost had to force me to go get treated on my last few days, I was burned so bad and in so much pain. It was 6 weeks for my first PET, but I doubt that 2 weeks make a difference. My treatment ended in July, 2010, and no colonoscopy, or biopsy done, or recommended yet. So, I am happy you are doing so good, and congratulations in finishing your treatments. I wish you a speedy healing and recovery. pat

Gulamin said:

5 more days to go
and I am truly counting... almost done. Let the healing begin. All of your words ring true.

When did they do your first PET scan and biopsy/colonoscopy? Some people say 6 weeks, my doc says 8 weeks...

My doctor did a biopsy at 6
My doctor did a biopsy at 6 1/2 weeks and my first PET/CT wasn't until 4 months. I recall my radiation doctor saying during treatments that the colorectal doctor would do a biopsy between 6-12 weeks. So 8 weeks is in the norm.....

nonichol said:

ct scan
My doc had me do a ct and ultrasound at four weeks and then again at eight weeks, a ct, and ultrasound with multiple biopsies.

Gulamin - I had my scan
Gulamin - I had my scan about 11 weeks after which was sooner than I probably should have. The scan prompted my surgeon to do a biopsy to be sure what was shown was merely scar tissue. I still have a small nodule left the surgeon will watch. I'm due for my six month scan in three weeks (CT). I think you will find healing to go quicker than you expected. The waiting and anxiety are part and parcel of the disease. Right now I do not feel that nervous about my scan but once it gets to be about a week before I will be nervous. How can one not be? Hang in there, healing will begin soon. I agree, may this cancer never darkened our doors again. Marilyne

8 months post diagnosis
First of all, I'm glad to hear you are doing better nearing the end of your treatments. Yeah!!

Now as far as my experiences post treatment. I was burned to the point on my front side that I could not wear any clothing and spent 2 weeks lying naked on the couch with a fan on (no house visitors those two weeks) :-( But just six weeks post the final rad treatment I was scheduled for a PET-CT and yes, I was anxious for the results, but had nothing to worry about; everything came out NEGATIVE. Another huge YEAH!! I did begin having a discharge that I originally thought was from my urethra, but later learned it was coming from the vaginal area. When I first visited my oncologist pre-treatments and tests, he wanted me to stop taking my HRT (hormone replacement therapy for medical hysterectomy in 2003), so I listened to him and stopped taking them. After many visits to my regular doctor, a gyn exam, and today a urology cystoscopy, what I've been experiencing is normal for someone going through menopause. So, now I am using vaginal/cervical estragen (Vagifem) and will begin using Replens in a couple weeks on the days I do not use the Vagifem. Today my urologist gave me a 2-week sample of Toviaz for OAB (over active bladder) to see if it would help with the feeling of having to urinate all the time, plus to see if we can eliminate the urine leakage.

I eat whatever I want and have not had any bowel movement problems. The BMs have gone somewhat back to what they were prior to diagnosis, but have generally been more loose, which is fine with me. The less I have to strain for hard stools the better. My only reminder every day that I even had cancer is seeing my chest in the reflection of the mirror: the port access just below my right clavicle, and having to get it flushed once per month.

I pray that you heal quickly, and that all Cancers are erradicated so no one else has to suffer.