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Just received cancer stage

jhart2018
Posts: 12
Joined: May 2018

First off, thank you to eveyrone who has commented on my previsous post. I am so thankful I found this page. Today I was officially diagnosed with stage 3 rectal cancer. The tumor has gone through the colon wall and has affected the lymph nodes surrounding the tumor, but thankfully it has not spread to any other organs. I start chemo/radiation a week from Monday, and meet with medical and radiation oncology on Tuesday to go over the detailed treatment plans. With that being said, what are some things to expect when I start treatment? What are some of the side effects I should anticipate? Will the treatment affect my interactions with my kids/wife (things I can and cant do while going through the treatment?) Will my diet need to change while going through treatment?

Thanks again for all the support!

Annabelle41415's picture
Annabelle41415
Posts: 6347
Joined: Feb 2009

My radiation/chemo started at the same time and took Xeloda pill during radiation.  Not sure what you are going to do.  Radiation was doable at first several weeks but it starts to burn the anus and insides and you might become uncomfortable going the bathroom.  There is aquafor to help with that and don't be afraid to use it liberally.  The pills didn't really affect me that bad so no burning of hands or feet for me wasn't a problem but it can be with some people.  Please ask your doctor about "relations" with your wife as sometimes this can affect people with rectal cancer and ability.  I'm hoping that your radiation might be different than mine, but it can "sometimes" affect ability and that is one thing my doctor never explained.  My diet never changed during treatment.  I'm not sure if you are going to do surgery to remove tumor after rad/chemo or not but that might be something you can tell us after things progress.  I'm here 9 years later and helping if I'm able.  Please do not hesitate to PM me or ask the others other questions.  Sorry you found us but we can help you get through this.

Kim

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

Drn this Cancer! You've become another victim of this dreaded disease. 

I'm also glad you have found this forum. We'll all be here to help you along the way.  You'll hit some rocky spots, and you'll be pleasantly surprised at some of the 'good' things along the way. Good, you ask. How can that be? Well, you're about to meet some great fellow Cancer folks, and maybe even make some special friends (I've made several, and I love them all). And, you'll LOVE your chemo nurses. They are angels. You'll learn that life is wonderful, even with Cancer.  Lots of good things. 

What to expect all depends on what chemo regime you are put on.  Once you know, we'll be better able to help you.  Fatigue is usually one that comes with all chemos. 

With some of the potent chemos, they do suggest you not have 'relations' with your partner the first day or two after infusion ( chances are you won't want to, in any case), maybe not too much hugging and kissing of the kiddies (young or old). I was even told to put the lid down on the loo, before flushing.   Emotions can be effected. Some get angry.  Sleep can be affected. Depression can set in. Jump on any and all side effects immedietely. 

One of my first suggestions is to get yourself a good notebook and write down everything; no matter if they seem silly or insignificant. Go through your list with the Oncologist before every chemo. I used to list all of my side effects from head to toe.

Be happy. When the going gets tough, be happy. Life is good and we just don't know when it might end, so enjoy every day. You will be surprised at how well you do. Just bully through those bad days. 

Good luck!

Tru

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

A typical Neo-Adjuvant Chemo course is either 5FU, which is infused, or Xeloda which is the pill form of 5FU. I had the pill form and I took the pills Monday - Friday for 28 days. I also had radiation therapy on the same days. The 5FU is taken with a pump that you carry around. You may need to get a chest port for the infusion. Those that have gone the 5FU route could comment on particulars.

The chemo will probably knock your red and white blood counts making you feel more tired and susceptible to getting sick. So they recommend that you not get sick. Things like cuts can take longer to heal. Some people have a relatively easy time of the chemo and some people get knocked down pretty hard. Your oncology team should have a chemo training session to go over the side effects and what to do in case of an emergency.

The radiation was the rougher part for me. It caused some brning and holes in the rear end which sometimes resulted in leaking. So some kind of pad is helpful when this starts to happen.

You can get constipation or diarreah or both, sometimes one followed by another. They may suggest things to take to help with either condition. The radiation can get quite painful in terms of passing solid waste. The feeling is often described as pooping out glass. The radiation pain went away for me two weeks after the end of treatment. Recovery varies from person to person. It's important to drink a lot of water before radiation.

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

To me it felt like pooping out a 20lb baby. 

Just saying. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6347
Joined: Feb 2009

Going to the bathroom was very difficult.  Sometimes it can be very difficult and having a good "barrier" with protection on your bottom can help.

Kim

goosemama's picture
goosemama
Posts: 1
Joined: Jun 2018

Goosemama here! I have just been diagnosed with colon cancer and waiting results of Pet scan to know stage. Waiting is the hardest. 

i had anemia which was debilitating until I received 2 units of blood followed by two infusions of iron. Energy back and no more shortness of breath which I am so thankful of. My oncologist said no radiation but either surgery first (which is my hope) or chemo first then surgery. 

Lucky to know my oncologist, he treated my husband, and have already set up appointment with surgeon.

Fear of the unknown with so many what if’s from what procedures to knowing if I can work or take short term disability.  I have told my kids but not rest of family which I really dread. Hate the worry that this is going to cause them so waiting to know how we are treating this so I can be as positive as I can be.

Has anyone worked while on the pump with 5FU? How many chemo treatments and what side affects? Doctor said it is well tolerated by most and only a few lose hair. Want to believe the best but doubts creep in. 

One fear is if it cancer has been there long enough to cause anemia then has it had time to spread? Another is that the surgery cannot be done by laparoscope.

This site has helped ease some fears. Any feedback would be so appreciate. Thank you. 

abita's picture
abita
Posts: 713
Joined: Dec 2017

I lost about half my hair so far. But I had thick hair, so now my hair is like that of most people. I am on 5fu, but I think it was the oxaliplatin that was making my hair fall out. I had to change the oxalplatin because of a reaction, and now it doesn't seem to be falling out too much. I answered this first because I know how you feel. And when I realized how much thinner it was, I was seriously considering stopping chemo. But I am not, because it stil is enough with 2 to go, and I do know my best chance at no recurrence is to finish chemo since I was diagnosed at stage 4. My hair has already started growing back.  

My colon surgery was an emergency one, so it went first. I did 4 chemos before my liver resection. Now finishing the last 8. I was folfox until my reaction, now folfuri. I do have the "brown" side effect. My fingers, now my hands, the lines in the palm of my hands, are turning brown. Now, if this happens to you, don't panic. It looks weird, I am pale as can be with tan hands. HOWEVER, when I took the break from chemo to get my liver resection, the brown went away. So, it goes away. 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

jhart2018 and goosemama, I hope I have something to offer both of you. To start, the first and best treatment for cancer is surgery. Anything else is secondary. There are differing protocals with chemo and surgery, however, depending on the person. Some have surgery immediately, some have chemo and/or radiation to shrink the tumour until it's time for surgery. Most people seem to have the 5FU pump for this but it's not a given. I had the 5FU pump and radiation and my worst side effect was fatigue.

During this and any time you're on chemo you need to eat. Your oncologist will not want you to lose weight because then they have to change the chemo amount and you need strngth to get through it. So eat well and don't cut back or try a diet at this time. 

I'm not familiar with someone having anemia along with the cancer so I'm not sure if this is a possible side effect or if it's your body's reaction to the whole situation. I've had side effects that seem to have nothing to do with cancer or chemo or any of it. 

I did not have laprascopic surgery, I don't think most people do. I have a huge incision scar. I'd rather they can get in there and have a good look than try to not give me a scar. My tummy looks like a bum with a tight area in the middle where the scar is. But I'm alive 4 1/2 years after diagnosis and will likely be here for a long time yet. That's all that matters.

Jan

abita's picture
abita
Posts: 713
Joined: Dec 2017

In my pre-surgery for liver resection, my surgeon started to apologetically explain the scar. I stopped him and said, so my choices are scar with chance to live, no scar and die, um, I'll take the scar. NYer here. But I am with you. I feel so blessed that I have a chance to continue my life, and a scar is the least of my worries. I am happy for you that you are doing well.

jhart2018
Posts: 12
Joined: May 2018

Thank you Jan!

Canadian Sandy's picture
Canadian Sandy
Posts: 545
Joined: Jul 2016

I had anemia with my cancer. It was one of the symptoms that sent me for a colonoscopy. Had to have an iron transfusion before my surgery. It did not cause my cancer to spread.

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

Invest in a bidet seat for your toilet.  Gentle washing is MUCH easier on the bottom than using tp.  I have a seat, and I swear by it!  Mine is the CleanSense 1500, which I love, but again, isn't cheap.  Get your dr to write for it, and it can be under Durable Medical Equipment on your insurance...

Alice

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

I got my Bidet from Amazon and it only cost $26.

I have been using it for five years, and use it every day (yes, sometimes several times a day).  I have it plumbed into the cold pipe, but you get used to it. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6347
Joined: Feb 2009

Very much helps.  Actually my doctor wrote a prescription for one so that it was like half the price.  It surely helps.  Soaking also helps but having water down there is a help because it burns coming out.

Kim

PamC
Posts: 9
Joined: Jun 2018

I just finished a long one-year battle with stage IIIC colorectal cancer.  I first started with 5FU conbined with 8 weeks of radiation. Other than feeling tired and sick to my stomach, this was fairly easy. I swam everyday and didn't miss any work. I then had surgery to remove the cancer and gave me a colostomy bag. They performed an unexpected hysterectomy due to the damage they found in my uterus. I also had two cancerous lumps removed from my breast (a second primary cancer found 2 weeks before my scheduled surgery) and another biopsy was done during that surgery. I then returned to begin double sessions of radiation for the breast, had a port installed, followed by 8 rounds of chemotherapy (they used three different chemo chemicals and I took home a portable chemo bag for 48 hours). I will be honest, I was miserable throughout the eight treatments and barely moved. I couldn't eat (or as my family said, wouldn't eat) which caused me to loss a good amount of weight. I had and still have neuropathy in my hands, feet, mouth and throat. 4 weeks ago, I had my colostomy bag and port removed. I had no problems with my reversal or with my colon functioning properly. My advice is to be honest with yourself and your doctors, be ready for endless tests/x-rays/bloodwork, trust that tomorrow will come and if you surf the internet read only articles posted in the last few years by reputable hospitals. This road is hard, but the fight is worth it. My margins are clear, my body is healing and I'm ready to get back to my life. Best of luck!

jhart2018
Posts: 12
Joined: May 2018

Thank you!

betula's picture
betula
Posts: 83
Joined: Mar 2017

Sorry that you have to be here but this place has helped me so much.  My husband was diagnosed with rectal cancer Dec 2017.  Here is how it went.

1.  He had 28 days of chem and radiation first.  The effects of this is cumulative so by then end he was feeling pretty bad and had lost a lot of weight.  He was still able to take himself the all of his radiation treatments though and continued to work until the last few weeks.  The doctors said his side effects would be more from the radiation than the chemo.  He had 5Fu pump mon-saturday mornings.   He had an 8 week break and then surgery.

2. Surgery resulted in a permanent colostomy because his tumor was so low.  Spent about 4-5 days in the hospital and then home and had  home health care nurse specializing in ostomies.  They came about once a week and were so great!  Colostomy has been an adjustment but he has been back to work as a firefighter and still able to do what he loves.

3.  Had a few weeks off after surgery and then started Folfox treatments.  This chemo treatment was infused and he went once every two weeks for this but also had a pump of 5fu for a couple days too.  He finished his 8 treatments.  Usually his side effects from tx were gone before he went for his next treatment.  Side effects were neuropathy, cold sensitivity in mouth and hands.  Still has some neuropathy in fingers and feet but it has gotten better.  He would sleep alot the first couple days after treatment.

4.  He had ct scans done about two weeks after treatment ended.  It showed something suspicious on his liver and then had an mri.  Mri determined it was just a cycst.  He just had his 6 month ct scans and we have an appointment next week for results. 

5.  During treatment he was still able to be invovled with our kids, ages 14 and 11 at the time.  Now he was not running around with them or anything but he was involved as much as he could.  We really tried to keep things as normal for them as we could.  They knew what was going on and that he had cancer but we did not make it a topic of conversation around them other than things like when he had appoinments, etc.  We figured this was our burden to bear, not their

6.  Come here with any questions or concerns.  These folks got us through some dark days.  Who knows, there may be more to come and if so, I know where to come!

jhart2018
Posts: 12
Joined: May 2018

Thank you so much!

jhart2018
Posts: 12
Joined: May 2018

Thank you everyone for all the advice and tips. the start of my treatment got pushed back a week due to scheudling. I go in tomorrow for radiation scanning and then later this week for the chest port instalaiton if my insurance doesnt cover the pill form and then begin both chemo and radiation a week from tomorrow. I found out the plan will be 5 1/2 weeks of bothe chemo and radiation, 2 moths to recover, and then surgery. I will have a colsotomy bag for 3 months and then reconneciton surgery early next year. 

While on chemo, did/are any of you wearing masks while in public?

Thanks again for everything!

Twinzma
Posts: 223
Joined: Jan 2018

My husband has been on chemo since December and has not worn a mask. The infussion center and his oncologist check his WBC weekly and aside from being told no dental work, he is okay. I had to go to the ER last week and was put in observation for two nights, so I wore a mask in hopes not to bring anything home. When my kids came home from school last month with a fever, they wore masks and were banished to their rooms. I also keep hand sanitizer by my front door, no-one can come in with out using it first. If I were in his shoes, I personally would wear a mask, but it is his choice. He goes shopping and to the movies and has been very fortunate thus far.

Remember though if you get a fever of 100.5 or higher to call your doctor right away. 

jhart2018
Posts: 12
Joined: May 2018

Thanks Twinzma. I personally dont really want to but my wife is insisting on it. She is in full mama bear mode, and I love her for it!

PamC
Posts: 9
Joined: Jun 2018

I would move my seat when in public if someone even sneezed. My daughter and husband became just as quick to move when they heard a sound. It was musical chairs. I also said no to visitors all the time in fear of a cold and only allowed family and close friends near me. 

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  Once it was discovered there was a tumor which in my case was located right at the intersection of the sigmoid colon and rectum. I was told since it touched the rectum it's considered rectal cancer.. 

  I ended up getting radiation and Xeloda for 28 sessions.  5 days on and two days off.  The radiation didn't impact me immediately but later on long after it ended I ended up with retrograde ejaculation.  The tell tale sign it's coming is it will hurt to pee.  I was told to drink something with cranberry juice to correct it.  I waited too long to bring it up.  For radiation you'll get three tattoos one on either side of your butt and one in the middle.  Those are to line up the linear accelerator.  A fancy name for a micro wave because that's what it sounds like when you're in the room getting zapped.  You'll have to get on a small table and drop you pants and shorts.  Forget modesty, it takes just a few minutes once they've got the routine down. 

  You'll get radiated in all three spots, left, right, and center.  Mine was about 20 seconds per side. I think the worst of it was just going into the cancer center and being confronted with the reality of having cancer.  Sitting in the waiting room you'll see other people in the same boat.  That was tough to bear because some of them looked half dead already.  In all honesty I began to wonder if the treatments were doing anything at all since I had so much more life in me than most everyone else in there.  I was an anomoly to some degree.  One, many people don't finish their treatments which is why the survivor rate isn't 100%.  On the last day the head nurse told me lots of people quit without finishing. That goes for taking the chemo pills too. I read where 80% of prescriptioins are not taken per doctors orders. So, take your pills and don't defer the treatments.

  You'll go through bouts of depression, anger, and what ever else.  My garage door has a hole in it from me taking a hatchet to it and a spare dryer with dents in it from me punching it.  Yeah, I got pissed a couple times. If you're lucky you'll have a wife who's supportive and won't let you down. That's a big plus knowing you've got someone in your corner.  The mental anguish is in my opinion the worst of it.  I didn't feel any real pain from the initial treatment.  Matter of fact, several of the nurses commented that I didn't look like I had anything at all.  I basically used denial to get me through a lot of it.  At first I'd read up on cancer and quite honestly that made matters worse.  So that stopped after while and is probably a good idea since there is no way to ever catch up to the level of knowledge your doctors have.  Don't try it and don't argue with them either.  Even coming to this site and reading of how some didn't make it would send me into a tizzy so I'd have periods of absense.  I think we all do or did. 

 Next step was the surgery itself.  That got scheduled about 6 weeks after I completed the initial treatment.  It went off without a hitch.  Within an hour or so of being glued back together I was awake and removing the leg braces and oxygen tubes.  The incision is about 6~7 inches long and is glued together.  Staples are what they used on the colon itself.  No, it won't set off the metal detectors at the airport.  I asked.  The nurses didn't think I was ready but I demonstrated I could walk and so forth so they allowed me free reign to wander the halls.  By the third day I was out.  Initially I was given a "no restrictions" on diet.  That should be qualified as within reason and doesn't include Big Macs.  I had my wife bring me one and within 5 minutes of eating it I had the misfortune of tasting it again coming back up.  Not to say they are bad for you but don't eat one that soon. The one thing I was dredding was getting a colostomy bag.  I was told that since the tumor was as high as it was that it was unlikely.   That was the first thing I checked for when I woke up.  Lucklily there wasn't anything.

 I was told I had clear margins and no lymph node involvment.  That means it appears the cancer didn't spread past the tumor itself.  I had to go see the oncologist and at first assumed he'd say I didn't need any follow up chemo.  Wrong answer.  He said there was a good chance the initial chemo and radiation killed off what was there so he wanted to put me on four months+ of Xeloda again.  Two weeks on and one off.  I merely said, I know enough to know I don't know so I won't argue.  That finished up on April 29.  It wasn't easy though.  I ended up with some neuropothy in my fingers and toes.  It's subsiding now along with the fatigure which got to me after a while. I was stuck in the house for most of the four months.  Reason being I lost bladder control and at first refused to wear depends.  I do now even though I'm getting control back now.  The affects of chemo sneak up on you. At one point I'd get up and my feet would hurt to walk.  It doesn't now but when that was happening I was thinking it was the end of the world.

 Last week I had a colonoscopy which was different this time. No post procedure pain.  The first time it was air they used to inflate the colon and it hurt within an hour after the procedure was done.  This time I didn't feel a thing.   They did find a couple polyps which have me very worried and I'm seeing if I can get the PET scan moved up to be certain there is nothing else going on.  That's what's so screwed up about this disease.  You can think you're in the clear only to find out you may not be.  

 

 

 

 

 

 

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