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what to expect rectal cancer-chemo/rad surgery/follow up chemo

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

My husband just began 6 weeks of 5fu chemo pump/radiation therapy. (stage 3) He has done beautiful the first full week..he has a very positve attitude. we were told the 5fu would not likely cause any side effects, that he would have more side effects likely from the radiation. We are armed with Aquafor, prepH, aloevera gel, immodium, etc. He will have to have a colostomy, as the 6.5 inch long tumor is encompasses the entire length of the rectum and parts of his anus. The chemo/rad will be shrinking things prior to surgery, then after surgery 6 weeks of 2days a week chemo to take care of any left behind. It is locally advanced, but hasn't spread beyond the tumor area. Dr.'s tell us it has been 2-3 years in the making..We are very strong in our faith & love to hear others' stories about their experience. Looking for someone to "hold my hand" virtually, thru this, and tell us there is hope...God bless all who can give us any insight. thank you.

lauragb
Posts: 370
Joined: Aug 2011

Welcome to the board, but also sorry for your reasons for joining. You can have your questions answered on here as your husband's treatment progresses. The folks on here are a wealth of information and you can also look through past threads for topics.

I was diagnosed with stage 3 rectal cancer last summer. I am now in the chemo portion of treatment. I will start by saying, focus on the here and now rather than everything this treatment encompasses. There is a lot to go through so it is less daunting to think of it one phase at at time. So in regard to the chemoradiation, I didn't have issues with the chemo but did with the radiation just as you have been told. I had a lot of issues with diarrhea, and pain in the anus and surrounding area. I have learned since my treatment that many people do well who avoid wiping as much as possible, instead using water from a peri-anal bottle to clean the area. Sitz baths with domeboro astringent are also soothing and that was recommended to me by the radiology oncology nurse. Putting Aquafor on the area even now is a good idea. Just make sure there is nothing on the anus when receiving treatments. I had bladder pain during and after treatments. It isn't unusual to have problems in surrounding areas. But, not everyone has these problems either. The radiation can do a good job of shrinking and even downstaging tumors, a reason to hope and a good outcome to visualize in your prayers.

I was fortunate to have great stoma nurses to work with me with my temporary ileostomy. I hope you and your husband will have access to these specialized nurses. They are awesome and can get people on their way to functioning well with ostomies. There are also folks on this board who are their own ostomy experts and willing to share their expertise.

I hope that you continue to post your questions. You are not alone and yes, there is hope.

Laura

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Welcome to the board where you will find lots of support. You can let loose your feelings and ask all kinds of questions. This is the one place where people know what your going through. Everyone is a little different in their treatments and reaactions so all we can do is compare and one thing we do alot of is pray for each other. We are all behind you and having a great family support group helps so much. We pray there are no side effects and everything goes smoothly and the road to recovery is fast. God bless
Jeff

Minnesotagirl
Posts: 141
Joined: Sep 2011

Welcome and I am certainly willing to "hold your hand" during this journey. I am a Stage 3 rectal cancer survivor! I was diagnosed in Sept., 2010 at age 49, had about 9 months of treatments...chemo, radiation, followed by surgery for removal and more chemo. I finished my final chemo treatment in June, 2011. My tumor did schrink prior to surgery but there was still residual cancer left to clean up with surgery. I think you are armed with all the good things that you may need...I would add Baby Desitin to the group but not until you are finished with radiation because it has Zink in it and could cause problems with radiation therapy. I didn't have to many problems with Chemo...radiation was a little tougher on the body for me. Hang in there, lean on your friends and family.

I have had problems after radiation with a fractured Sacral ala in the hip area due to radiation breakdown in my hip bones, osteopenia and Osteoarthritus...I would recommend that a bone density scan is done prior to radiation to get a base line before treatment. I wasn't told of these possible side affects and wish someone would have shared that info. with me... if you were a female beginning this treatment plan, I would recommend a few other ideas but I won't because it doesn't pertain to your husband.

You both will get through this...he is lucky to have a loving, caring caregiver by his side. My husband was great and it really cemented our almost 30 year marraige to each other. God's blessings to you both and may you grow together in faith~

Minnesotgirl

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

thank you all for responding ...I was so excited to see I had responses! It is so wonderful to talk with people going thru much the same things..and knowing there is light at the end of the tunnel, gives us hope. We have met with a local couple who has also been through the same journey, and they told us that we would be seeing an ostomy nurse who is wonderful..knowing that there will be help and support to get through this is what we need. It's hard to discuss certain aspects of this with friends/family..they cannot understand, although they try...help needs to come form experienced survivors. Also, my husband is self employed and will not be making money during the time he has to go for surgery and recover (and possilby other times too)..I am the insurance carrier, so I have to balance my job, along with his care & being a mom...This has me very worried about finances, which I don't want to have to worry about at a time like this. we are leaving all up to God..we know He will see us throught. Our marriage (24 years) has changed for the bettter through this..we had "grown apart" in some ways, and now we are so strongly in love with each other again..God works in mysterious ways, as this was something I had been praying about for a long time. God bless each of you & I will pray for your continued recoveries as well..
Lea

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hello and welcome :)
My input would be to take one day at a time...be prepared for what you can,, and accept there are things that will take you by surprise. Sort of like continually adjusting the sail on a sailboat.
He can do this.

coloCan
Posts: 1956
Joined: Oct 2009

as during the following week or two the effects will intensify and then subside.All of this is doable as is living with an ostomy...Let onc and radiologist know of problems as soon as they arise, if any, as there are counteremeasures for most....steve

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

thank you both ..we are learning "one step at a time"..this is so true..& we have awesome doctors, who are on top of everything..we will let them know when problems arise..I appreciate so much your advice. Where do you get "sitz" bath stuff? is this something you buy and put into bath water?
I need to get some of this before we need it!
thank you
lea

lauragb
Posts: 370
Joined: Aug 2011

You can get the Domeboro's astringent powder at your local pharmacy. It is with the poison ivy meds. It is costly so I ended up buying a larger quantity online for a cheaper price. I can't remember offhand where I got it. But you can find suppliers by googling it. The sitz bath is just a bowl type tub that sits on your toilet. Fill it up with water and also fill up the bag with water. I had a hook on the wall for hanging the bag. I got the sitz bath at a medical supply store for about five dollars.

Goodluck. Sounds like you are being proactive:)

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

I am definately being proactive! I appreciate the info very much. Prayers for you all today will be going up..God bless :-)

valley
Posts: 94
Joined: Jun 2007

My husband was also stage 3 rectal cancer diagnosed Jan. 2006. He had chemo and radiation, surgery and chemo again after the surgery. He did great during his treatment. The radiation was a little more difficult but only towards the last few treatments. He has been NED since his diagnosis. His attitude has always been good and never negative. I truely believe that this has helped him survive along with a good diet and exercise. Hope this helps

val

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I went through pretty much the exact same thing and now I have been cancer free for over a year. You husband is in for alot. It's going to be hard but he can make it through and so can you. I also live with a permanent colostomy and that wasnt easy. But physically It's all good. What's your husbands first name? I will keep him in prayer.
Good luck stay strong, and if he ever want to talk with someone who's been there just send me a message and we can exchange numbers.
Peace, Tom

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

His name is Randy..we will pray for continued health for you too!

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

Welcome to the board and wishing the best for your husband. Make sure he uses a sitz bath as that will help a lot along with soaking in the tub. Radiation will continue to make him tired and fatigued and have him rest as much as he can. And yup, his butt will hurt like heck and only get worse and worse. Remember that the radiation still keeps working up to 6 weeks after it is stopped. Glad that you are so supportive of him as that is going to make his recovery so much more easier. You deserve a big plus of support in your efforts and getting on this board and trying to find answers for him - he's got a great wife. Good luck to you both and ask away. After having colorectal cancer, most of our modesty went out with the bath water :) so we talk about anything.

Kim

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

all the modesty is "out the window" at this point! thank you...and my question about the sitz bath..can't you just sit in the tub..or do you have to have the sitz bath toilet attachement?
thank you for your response!
lea

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

Sitz is a little different as it sprays up the anus and relieves the pain. When you sit in the tub, you do just that, sit. When you have the sitz bath (using one on the toilet) the relief is so much better. Don't expect a quick recovery from that either, I'm still dealing with bleeding from wiping so much so expect that at times too.

Kim

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

thank you Kim!
I will get one for him. I appreciate your advice :-)

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Not to scare you, but we all know different people tolerate things differently. So, just in case here are some things that helped me. For me, with that part of the treatment...I got very sick. The last few weeks and 2 weeks after the diarrhea was very bad. I had to go on the brat diet to tolerate any food. That is bananas, rice (white), applesauce (I couldn't tolerate), and toast (white). I lost 10 pounds during this time. My daughter (my caregiver) bought me ensure but I couldn't drink it..... Buy him a nice brand of toilet paper, you will never buy the cheap stuff again. They make flushable wipes you should think about too. Also, I was at the onc time after time that I just knew I had the worst UTI ever. It wasn't. Radiation can also burn the urethra. The 2 weeks after chemo I didn't leave the house because I couldn't hardly sit up, sit down, walk, and definitely couldn't pee without crying out a little scream each time. This is the time of treatment I took vicodin. The good thing is he will see improvement every few days with the nausea and diarrhea after the treatment stops, and will have his appetite back in a couple of weeks. .....I put a hook/screw in the wall by the shower door to hang my pack on while I showered. I just showered carefully from the armpits down on that side of the port and used a washcloth where I missed above it.

I have heard others say they didn't have this time so bad, I hope your husband goes through it easy too!

plh4gail

coloCan
Posts: 1956
Joined: Oct 2009

your husband that the chemo and radiation WILL end and that every dose finished is one less to do.....

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