Final days...

Gulamin · January 2011

The chemo is done and 8 days of radiation left. My skin has been holding up ok. It's red and is starting to turn black in some areas. It hurts to go to the bathroom but it's still ok. I am hoping that my skin will get through it without breaking down but know, from reading all of your experiences, to expect anything to happen between now and two weeks after treatment. Taking it one day at a time. I am still eating pretty much everything and my nausea was not bad during chemo so I count my blessings. I hope things will not get much worse... will keep all of you posted and come back for advice.

I have a questions about the booster. I have one booster treatment scheduled which appearantly is to target the area more intensely. Is that a different experience or just the same 'burn the heck out of it' experience?

Another question: how has life been for you after it has been done? The two week after, the healing after that. The waiting until you get the results... is it gone? Did they do an anal ultrasound and another biopsy (which is what they told me they will do after 2 months) or PET scan? My doc told me that there is a huge controversy around the PET/CT scan issue after treatment and that this will change... meaning they will do them a lot less as they are concerned about the damage to the body. I think it was standard protocoll to do the PET scan to make sure it is all gone but now my doc tells me that they may not do this anymore....

How has life been? Is it possible not to think about cancer all the time even though the side effects never seem to be gone? Has the quality of life improved because we have had such a horrible reminder of how precious life is... and short it could be...? Am wondering how you are all dealing with this? Is there this 5 year mark when we can all take a breather once we passed it?

Would love your feedback on this. I hope we all will be free of this cancer... forever.

mp327 · January 2011

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!

duckyann · January 2011

Hi Gulamin,
I also want to
Hi Gulamin,

I also want to say that I am happy that you are nearing the end of your treatments and you are holding up pretty good. I hope that you will continue that way. Don't be surprised that when your treatments are over, that you become pretty emotional. Kind of strange but a lot of people go through it as I did too. You are happy that it is done but then kind of lost in the same aspect. (hard to explain)

I had 8 boosters to the tumor area. Also, my colorectal doctor did a biopsy 6 1/2 weeks after treatments. Not because he felt or seen anything but I am assuming it is procedure in his practice. (this is just a guess) I then had a PET/CT 4 months post treatment, another biopsy 6 months post treatment and then a PET/CT again 1 year after the first follow up PET/CT. My oncologist told me that I would receive the scans annually. He also explained that a lot of times insurance companies will not approve the PET because there isn't any real "proof" that it is necessary in anal cancer patients. He doesn't necessarily agree or disagree with that. He told me that he likes to use any test that may help make sure that there isn't any cancer and also to keep his patients feeling comfortable.

As far as not thinking about cancer.....I am 19 months post treatment and I am doing better. I don't think about it every minute like I use to but I still think about it daily and I do have my times where it enters my mind much more than it probably should. I really think that when I hit the 2 yr mark I will be able to breathe a little more. I definately have changed in some areas. For instance work use to be so extremely important to me and I would stress all the time about it and now I don't. Work is important but just not to that extreme. I do my job and try very hard not to let it get to me. I also let things go much more than I use to. Life is too short and I will not let a lot of things or people get to me like they did in the past. I also can not comment on the 5 year mark because I have not reached that either. I really hope that we can take a breather by then.

Best wishes to you and the final treatment days. I will keep you in my prayers. You will begin to heal pretty fast.

take care
Nancy

grandma2selena · January 2011

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 · January 2011

grandma2selena said:
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.

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...

patacz · January 2011

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

grandma2selena · January 2011

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...

PET scan
If my memory is correct I believe I went 6 weeks before having my first PET scan and biopsy/colonoscopy. My doc said 8 weeks as well, but then went ahead and everything got scheduled a little quicker then he said.

duckyann · January 2011

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 · January 2011

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...

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.

sissy310 · January 2011

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

lizdeli · January 2011

sissy310 said:
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

Scans
Gulamin
You're almost done! So happy that you are finishing treatment. On to the healing and yes, some scanxiety.

I finished treatment on 9/11/09 and had my first CT scan and all the scopes and whatever they did while they were scoping, on 12/17/09. I wanted to get it done sooner but my team of doctors said they wanted to wait because early scans can produce false positives since the chemo and radiation is still actively at work. Waiting for the first scan/pet/etc is the hardest and the relief when it comes back good is the most elating. I go for my 4th scan at the end of Feb. I will soon begin to morph into a a nervous wreck. It gets a little easier but I can't say that the anxiety ever goes away. Maybe after 5 years I'll be able to go for scans without working myself into a tizzy. On the flip side of the coin, getting the good news that is well is an incredible feeling.

Looking forward to a virtual celebration when you and Darcee get your first wave of good news!
Liz

ranelle65 · January 2011

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.

Final days...

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