Stage IIA, T3, N0, M0 rectal cancer - new diagnosis

My situation was a bit worse than yours (stage iv, liver mets) and I'll just tell you what one of the wonderful nurses at my oncologist told me when I was trying to plan out every detail of my upcoming cancer journey.  She simply said: "You haven't even had your first chemo treatment yet.  Relax and take this one day at a time."  

Welcome to the forum.

mountainhiker

I'd suggest doing some logistics planning in setting up a system to take the Xeloda and tracking it and in getting to/from the radiation facility and making sure that you drink 20 or 24 ounces of water before your appointment (the radiation center should talk to you about that).

I found very little in the way of effects of the chemo and radiation until the third week. I think that the Xeloda can cause diarrhea while the radiation can cause constipation. Miralax and Imodium are often suggested to control them.

The Xeloda will likely knock your white and red cell counts so you will feel tired and your body won't be as able to fight infection so maybe limit the amount of time in places where people may be sick. Get any needed dental work done before you start.

The issues with burning skin showed up around week 3 or 4 for me. Your doctor may have product samples to help deal with the burning issues. Going to the bathroom can become very painful too, especially near the end. The pain stopped around two weeks after the end of treatment for me.

You might consider Depends Shields for Men. These are small pads that go in your underwear to contain small leaks.

The cancer stuff is a long and tough journey but we'll help you through it.

Oh, how I remember the stage you are at now.  The good thing is, soon you will be at the stage WE are now. But, until then, roll with those feelings of fear. They will be with you forever, just not as intense as they are right now. 

Stage II is better than Stage III which is better than Stage IV. So think on that, and give thanks to the universe, God or the space above you. But, it doesn't matter the stage at the end of the day, its Cancer, and Cancer is scary. 

Chemo. I did the Oxaliplatin and 5FU, so can't help with the Xeloda, except listen to our friend Sandiabuddy. Slather up those hands and feet, because once the skin splits, it heals very slowly if at all, during chemo. 

Radiation. I could scare the poop right out of you telling you how bad it was for me. But for many folks, it isn't so bad. Just be prepared. Be prepared for it to be bad, while hoping for it to be good. My advice in preparation for radiation is to buy some Depend underwear. Keep a spare set of unders and trousers in the car, and pray you don't need them.  I was very thankful for the Depends - Depends were my friends (past tense). 

Pure Aloe vera worked well for my radiation burns. Not the gel kind, but organic and pure. You have to keep it in the fridge.  Its really a matter of finding out what works best for you, but always good to have something on hand. I also use Vitamin E oil. 

A good suggestion though is to try and take it one day at a time. Don't look ahead too much, when you've enough on your plate right now. 

I'm sorry for your diagnosis. 

Tru

Tomorrow I'll write a little more on my experience.  Just wondering if they mentioned anything about an ostomy, or temporary and if you are having surgery.  A little more info would be helpful if you know. 

Kim

Steven Christopher 1962 said:

Thank you!

Tru,  thank you for your response.  It's helpful to hear from people who have gone through this.  The doctors and medical team are helpful, but no one has said anything about the possibility of needed Depends or pads.  Ugh!  Did you just put the Depends on before you left the house everyday?  Or only during the radiation or chemo treatments?

Sorry, I couldn't resist. 

Yes, I had to wear them everyday. For the most part it would 'catch' what was coming out, enough for me to get to the loo and clean up and not get it all over my clothes (which has happened more times than I care to tell).  They are basically made for urinary incontinance, so don't absorb the feces. But, it is better than your cotton underwear. 

And, it doesn't last forever. Don't worry about wearing them, let them be your friend, and then, when you're all through with this, it will be all in the past.  

Good luck!

Tru

Steven Christopher 1962 said:

Thanks

Mikenh,

Thanks for your honesty.  Wearing Depends or Shields was/is a fear of mine.  I hate this.  I'm glad to hear that you adapted and lived through it.  That gives me hope.  I just don't know if I have the strength for this.  I'm trying to focus on today - the one day at a time motto.  

When you wore the Shields, is that something you just put on everyday before you went out?  Only during the radiation treatments?  For a while after the treatments ended?

I started using Depends shields when I noticed leakage. And I just wore them to keep things cleaner. The Shields are pretty small. Things will likely get pretty rough in the second half of the treatment as the radiation has to go through your skin to get to the tumor. You may have an easier time of it as your tumor is a lot smaller than mine was. It's possible that you will get a Pathalogical Complete Response as well and not need surgery; maybe just followup chemo.

The Shields are not diapers. They are just small pads.

This is a video of me hitting tennis balls (I'm in the foreground) on my next to last day of chemo and radiation and I am wearing the Shields. It doesn't look like I have cancer or am on chemo and radiation. So your capabilities may be somewhat limited but most can generally function.

https://www.youtube.com/watch?v=R_ipaq4HTk0&t=1082s

Steven Christopher 1962 said:

Thanks for the responses!

Thanks folks!  

To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

I've gotten on the board so late I'm not able to post what could benefit you.  If you click on my name "Annabelle41415" and then look to the top of the page in the light green space there will be an "about Me" page.  It will tell you what I've been through.  The need for chemo after is called "mop up" if there is no spread.  It is supposed to ensure that no cells have been released to float or escape and then attach to other organs after surgery.  Radiation and chemo works for several months after quitting so it is still effective even though you are done.  They want to let it do it's job to kill as many cancer cells as possible to get a clean margin when doing surgery.  Then after that to do "mop up" chemo to kill the left over cells that might have been released.  Once again, I'm sorry this post is so short.

Kim

Steven Christopher 1962 said:

Thanks for the responses!

Thanks folks!  

To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

The reason for the ostomy is for the the healing after surgery and to make going through chemo more comfortable. Adjuvant Chemo (the chemo after surgery) can result in pretty bad diarrhea and it's a lot easier to deal with it with an ileostomy than with your large intestine. The Adjuvant Chemo is generally more difficult than the Neo-Adjuvant Chemo (chemo before surgery). If you live in an area where it is cold, then it can get uncomfortable.

Stage 2A is a gray area for Adjuvant Chemo. Some people will do what's called "Wait and Watch", so no Adjuvant Chemo, just surveillance (blood work and scans). It works fine for some and some regret it because they have a recurrence. I have Stage 3B and the protocol is Adjuvant Chemo whether A, B or C. That choice would be up to you and your doctor.

On surgery: I would recommend getting a board-certified colorectal surgeon. I would further suggest getting your surgery at a major/volume/top cancer center if possible. I had my chemo and radiation locally but went to Boston for the surgery as there aren't any specialist surgeons in my state for working on this kind of cancer.

Treatment protocols for Stage 2 and Stage 3 are under some experimentation (clinical trials) and change. The protocol is Neo-Adjuvant Chemo and Radiation, Surgery, Adjuvant Chemo, Reversal of the Ileostomy. The newer approach is called Total Neo-Adjuvant Therapy and it's in clinical trials at major cancer centers. TNT starts with 1) Chemo and Radiation and then the old post-surgical chemo or 2) The old post-surgical chemo and then chemo and radiation. If the patient has a pathalogical complete response, then surgery might not be required.

There's a paper on this at: https://www.sciencedirect.com/science/article/pii/S1533002817300543