Hi, I'm new here and I'm so glad I found this site. My husband was just diagnosed with rectal cancer..cat scans were negative but he still needs an endoscopic ultrasound to stage the depth of the cancer..The surgical-oncologist said that doing chemo-radiation before surgery is recommended to decrease it from re-occuring in the rectum but if he really wanted it out now he could do the surgery..He also said we don't have to make a decision right now..but when you hear it's cancer you want it out of your body as quick as possible..He said it would not increase the survival rate overall but it would be better to kill off the cells before they operate and may be able to do laproscopic surgery. Has anyone been faced with this decision?.We're still in shock, just had our first grandchild, enjoying life and this hits us..I haven't slept, crying all the time and trying to be strong around the family...I think I need therapy ,he is stronger than me....has anyone lived longer than 5 yrs. after rectal cancer???..I just feel so helpless right now..I wish it were me......

Hi Susie
I just read your post and felt compelled to respond --I know exactly how you feel and the fear and uncertainty that goes with it. My husband of 19 years was diagnosed in April (Friday the 13th!) with Colon Cancer. His is stage 3, and he's undergoing chemo right now. The initial shock is the worst. Believe me. It does get more manageable (the emotions) as you go through the process and the plan of action. Depending on his stage and lots of other factors, many people are surviving beyond 5 years. I know rectal cancer has a little different treatment plan than colon cancer and may include more chemo but I think that the survival rate is good for both colon and rectal cancer these days. Don't worry, and you will be strong once you get in touch with good medical care and feel the support with that and with groups like this. Take it one step at a time, get through it together and you will come through it. It's not easy and as a spouse in the caregiver role I feel the same way, mostly helpless and frustrated, and that's natural.
Hope this makes sence and is some help to you. My best wishes to you both

Hi Susie...sorry to hear about your husband's cancer. I was dx'd in November '05 with rectal cancer. Over the almost two years now I have gone through what I would consider a protocol standard of treatment for Stage IIIC Rectal Cancer. This is based upon my own research and from the many stories of the veterans on this board. That being said...the one thing that you'll need to remember is that everyone is unique in how the process affects them, ie, pre-surgery (radiation/chemo, surgery, adjuvant chemo...illeostomy issues (if done), etc. There is a fine young man who hasn't posted too much lately but who was a tremendous help to me any many others regarding his knowledge and experience with his rectal cancer. Cancer Dad was dx'd and tumor staged the same as me (I believe) T3, N2, M0 but that's where the similarity ends. Anything that could go wrong seemed to have happened to him...in spite of that he continues the battle. I haven't posted very much on the board but at some point I do want to tell my story. It will be long...so I'm not going to do it with this post. In response to your more immediate question...my tumor was low 6 cm distal from the anus...and blocking my bowels. I did a 5 week regimend of chemo and radiation prior to surgery. I was also on a liquid diet. The chemo was oral (Xeloda) taken daily...and the radiation done M-F. I tolerated both well and drove myself to & from the apts. Very...very tiring, however. Initially I did have scans which were clear but because of an extremely high CEA count...91 up to 131, I had a PET/CT scan to make sure it hadn't spread. At the end of the 5 weeks my CEA count dropped to 41 but the tumor hadn't shrunk much. This took place from early Nov '05 to Mid-Dec '05. While I didn't get dramatic results from doing the pre-surgery radiation and Xeloda...because of the CEA drop...it sure didn't hurt...and I would do it again. In late Jan '06 I had a traditional resection surgery done ( 16" lower bowel removed) with a illeostomy. If this information I am sharing with you is of help then I will continue my story in subsequent posts. By the way I am 58 and otherwise was/am in excellent health. It's tough...but you both can get through this...later

Osage, it is good to see you back with us! How are you feeling now? You sound great!

Just to add my husband's experience. He had surgery right away though they considered chemo/radiation first. They felt he might get a blockage if they did not operate. Who knows? We put ourselves in the hands of the professionals hoping they make the right decisions for us!

A month after surgery, my husband started chemotherapy and had eight months of that...it was spaced out more at the end as he had some complications. He also had five weeks of radiotherapy. he was able to work part time during the second phase of treatment.

This was all four years ago and he has been doing really well. A recent scan has caused some concern but two colonoscopies and biopsy have not indicated any problem, so he is presently being closely monitored for the possibility for local recurrence.

When he was first diagnosed, our daughter in the UK was about to give birth to our first grandchild and we were supposed to be there. I lied to both my children about why we could no longer make the trip and it was only after our grand daughter was born that I told them the truth. It was a nightmare for me....I went around in a fog, even though practical mode kicked in. Having to deal with so many practical issues and look after my husband prevented my falling apart. But it was hard. It will get easier for you, though this is the start of a new era of your life. It will most likely never be quite the same again. That is how life is....full of change and not all of it good!!

I wished it were me too...but don't wish too hard because last year, I was diagnosed too!!! With lymphoma. My own caused me much less distress than my husband's. My heart hurts when I revisit some moments he had and the thought of it coming back. But I try to live in the present as much as possible. I have been told mine will definitely come back so I do not allow myself to see into the future.

Do let us know how you are coping. We are here to help as much as we can and more than happy to answer any questions you may have, if we can.

Love,

Hi there again Susie...I just re-read your post again and regarding my post I want to make sure that you/we are not getting ahead of ourselves. My cancer was deeply invasive stage IIIC with mutiple lymph node involvement. ( 5 of 22 sampled). It is certainly not clear at this point what stage your husband's cancer is. The ultrasound will present a better picture of the situation...size of tumor...presence in lymph areas but even then the true bottom line probably won't be known until after surgery and a complete pathology is done on all the material taken out. Their initial view of the tumor (colonoscopy or sigmoidoscopy) and the fact that the surgeon is talking about possibly using laproscopic surgery might indicate that the tumor is not very large...possibly no lymph node involvment, etc. I certainly am not an expert on the subject...perhaps using pre-surgery radiation & chemo is now standard for stage II...I don't know that answer. Also...you don't mention any discussion so far about possibly needing an illeostomy. So...I guess what I'm trying to say is that it is very early...you should try and stay positive...until you have more facts and a clearer picture of whats going on. Question...is your surgeon a board certified colon/rectal surgeon? My thoughts on that are...if you had a problem in your brain...would you want a regular surgeon working on it or one that specializes in brain surgery. Same thing with colon/rectal cancer surgery...I would want someone that's done hundreds of them and all the experience that comes with that. Good luck and let us know how things are going...Osage

Thank you all for your replys..It's so good to know there is hope..I know there are major break throughs with cancer treatments and I have to keep positive...It's so hard tho when it hits home..I can't keep going back to the should'ves...He and I are both 58 too Osage..You all give me such hope and I thank you for that..I am so glad I found this message board.He still has to be scheduled for an EUS and then start chemo-radiation..The doctor did mention Xeloda an oral med. instead of 5FU IV...I want it to start already..He did mention about a ileostomy too..hopefully temporary..it's wait and see right now and he's getting depressed already..we babysit full time for our grandchild and he is keeping him going..Thank you alll again..love to you all..My grandson is crying to eat....Be back soon with more info...

Hi
I am new here too. My husband was also diagnosed with rectal cancer recently. Thay also said he would have to have chemo and radiation treatment for 6 weeks five days a week before surgery. I too have cried but am now feeling that I have to be the strong one to get him through this. I do all the calling for his appointments and tests. I no longer want him to see me cry because I want him to be positive about his treatments and final outcome. They are still not sure about if he will need a colostomy but we will deal with that when the time comes. I know he is scared because he has been watching my mom battle bone cancer for the last twelve years and god bless her she is still fighting for her life. I felt the same as you. When he was diagnosed, it was a shock. I stood strong so he didnt see my reaction but I went to an empty parking lot and cried. We have both cried together since then and he has cried when in pain. I want to be his strong hold and that is what I have done since. I make sure he eats and try to help him rest. I basically have made up my mind that I will do what ever it takes to get him through this because I love him. I will cry when I want but where he cant see me because I dont want him to hurt. He is hurting enough with out me adding to it. Most important, I let him know every day I love him, I am there for him and I will do what ever it takes to make him a survivor of this. Good luck to your husband and I know you will do what it takes to get him through this. If you want to talk I am here.

Patti

Hi, I Feel For You And Your Husband. My Twin Sister 52 Years Old Has Rectal Cancer And On Her 5th Week Of Chemo And Radiation. In Her 3rd Week Of This She Started Getting Red And Breaking Out In Little Sores Down Below In Both Places. She Is Hurting Real Bad Between Her Leggs And Nothing That We Have Tryed Has Help The Pain And Burning. She Is Hardly Eating Now. She Will Have Surgery In About 6 Weeks To Remove The Big Tumor And Doctors Says She Will End Up With The Bag. We Are All Very Upset About The Whole Thing And What She Is Going Thru. We Try And Not Cry In Front Of Her,but Us Being Twins And So Very Very Close The Tears Just Run Out. We Do Lots Of Huging And We Do Cry Together When No One Is Around. You Need To Ask His Doctors If There Is Anything To Help The Redness And Burning When He Comes To That Stage. Lots Of Lluck, And In The Same Boat....karen

Aquaphor helps alot in that area. I bought it by the tub load. It is very painful and I cried daily

Hi everyone. My husband was diagnosed with rectal cancer in August 2006, age 43. we were devastated like you all. He had 6 weeks of radiation combined with 24/7 intravenous chemo 5Fu prior to surgery to try and shrink the tumour.
Karen I read about your sister having problems with burning etc .My husband did too especially after he had to use his bowels. we were told by his surgeon to use zinc & Castor oil cream available at the chemist, he said this helped a lot and they also got him to take Coloxyl with sienna tablets to keep his stools soft and keep him regular, to avoid constipation, as he was given pain relief towards the end of his treatment which can cause constipation.
He went into hospital on 250107 and had the tumour removed ( tumour was 4cm away from his sphincter, narrowly escaping a permanent colostomy bag) and was given a (temporary) loop illeostomy bag. This followed another 26 weeks of chemotherapy (weekly visits) as 5 of the 15 lymph nodes taken were affected. He had his check-up in September (6 weeks after chemo finished) and is now in remission.
Due to complications from blood clots he was unable to have his illeostomy reversed back in May, as was originally planned. He is due to go back to his surgeon next Thursday, 01/11/07 to get a date to have his bag reversed. I will keep you posted on progress
Keep positive, my thoughts are with you all that are going thru this and to your families. Linda

Hi folks. I am a stage IV colorectal cancer patient. I did not have radiation or chemo before my surgery as my surgery was on an emergency basis. That is an extremely long story which can be found if you read my earlier, I was on the FOLFOX6 + Avastin chemo regimen from mid-December 2006 until msid-June 2006. The 2 mets in my liver shrunk significantly during that time, but they are still there. I am currently taking Xeloda, which has been far easier on me than the FOLFOX6 (infusion). Take heart...I was not expected to live due to another, more threatening, condition than the cancer at the time. A year later I feel better, look better and am able to do a lot more things than I have been able to for a long time. There is SO much more that they can do for colorectal cancer these days! I also have a very large group of people that pray for me daily and have for 14 months now! I honestly have to say that I don't worry about my cancer at all (unless it's time for a CT scan), and I try to live each day to the fullest. A positive attitude is so important in dealing with this disease.

Oh, I have a colostomy, too, which I have not been able to accept mentally, even though I have had it since August 2006. This is my own fault. The colostomy really doesn't cause me very many problems. I'm hoping I can have it reversed at some point. Time will tell!

God bless you as you go through this difficult time. It does get easier once you get over the initial shock of the diagnosis! It really does.

Pam

My best to you.

Susie24 My Twin Has Rectal Cancer And Going To Have Surgery About 4 Weeks..she Still Have Trouble With The Sores From Radation. What You Said About Only Having 5 Years To Live...i Dont Understand, So After My Twin Gets This All Done She Is Going To Live Only 5 Years???? Please Tell Me This Is Not True...please