rectal cancer survivors

MJay

I am 38 y/o mom of two diagnosed with stage 3 rectal cancer. I went through chemo and radiation. Just had a colonoscopy today. Surgeon says he sees no cancer only scar tissue. That I have had a "good clinical response" to the treatment. The tumor 5-6cm tumor is gone. He is still talking about surgery to remove rectum and anus leaving permanent colostomy. I need help. I need to hear from people who have walked the walked. Every fiber of my being says to fight this surgery. Has anyone out there had rectal cancer and opted not to have the surgery??? I hate to play Russian Ruoulette with cancer but having the surgery doesn't guarantee I will never get it again. If there is anyone out there who will share their story... please. I would appreciate it. Thanks. MJay

Kaye2003

My husband was dx with rectal cancer oct, 2003. We were told he would need rad/chemo, surgery and permanent colostomy.
He also responded well to the rad/chemo. Tumor shrank to the size of a dime. He did have surgery to remove the tumor and some surrounding tissue. His surgery was Transanal Excision. Nothing removed but the tumor. Path came back with clean margins. No cancer. He is now on post op chemo. Two weeks left. Still no guarantee it will not come back, but we pray that it will not.
Read, talk to people on this board and PRAY, the answer will come.
God bless, and hope this helps.

littlejulie

Hi Mjay,
My mother was diagnosed with stage 3 rectal cancer in March. She has been through pre opertative chemo & radiation, surgery, and now she just started chemo again to clean up anything that might have been left behind. There are MANY rectal cancer survivors on this website - You've come to a great place for support. Browse through the personal web pages and you'll read the many survivor stories. I never heard of anyone not doing the surgery though. You have to fight this with everything you have inside and having the surgery is a big part of the fight. Talk to your doctors - what are they suggesting. My mother and I were SO worried about the surgery but now it's just a memeory. She tolerated the surgery very well with no major complications. You are so young - Your two children need you to FIGHT this with everything you got! My mother has been so postive through her battle and she won - I wish pray for the same results for you & your family. Stay strong and you'll kick this in the ****! excuse the pun!

julie

tkd3g

Hi MJay. Sorry for your struggle. I am a mom of 3 girls ( 6,13, and 15). I'll be 43 in October. I was diagnosed with stage 3 rectal cancer in March. Just like Julies mom, I had pre-surgical chemo/radiation, then surgery ot remove most of my rectum, 1 foot of colon and just to boot, my ovaries and tubes . I am now into my post-surgical chemo a couple of weeks.

Surgery was not an option for me. I had to have it. The pre-op treatment worked excellent, but there was never any discussion about not operating.

Obviously, your situation is different. I did not have to have a colostomy. I'm guessing that the tumor was very low for you to have a permanent colostomy.

It is a very big decision. Have you gotten a second opinion? Perhaps at a large cutting edge hospital. My surgeon said he had one good chance to get the tumor and not have to get the colostomy. My tumor was low, but didn't involve the anus. Please get a second opinion. If for nothing else, it will give you more information.

Now, I know someone who has a permanent colostomy for 25 years. A beautiful woman in her 50's now. You'd never even know she had one.

Best of luck in your decision. We are all here for you and you and your family will be in our thoughts and prayers.

Love, Barb

kangatoo

tkd3g said:

Hi MJay. Sorry for your struggle. I am a mom of 3 girls ( 6,13, and 15). I'll be 43 in October. I was diagnosed with stage 3 rectal cancer in March. Just like Julies mom, I had pre-surgical chemo/radiation, then surgery ot remove most of my rectum, 1 foot of colon and just to boot, my ovaries and tubes . I am now into my post-surgical chemo a couple of weeks.

Surgery was not an option for me. I had to have it. The pre-op treatment worked excellent, but there was never any discussion about not operating.

Obviously, your situation is different. I did not have to have a colostomy. I'm guessing that the tumor was very low for you to have a permanent colostomy.

It is a very big decision. Have you gotten a second opinion? Perhaps at a large cutting edge hospital. My surgeon said he had one good chance to get the tumor and not have to get the colostomy. My tumor was low, but didn't involve the anus. Please get a second opinion. If for nothing else, it will give you more information.

Now, I know someone who has a permanent colostomy for 25 years. A beautiful woman in her 50's now. You'd never even know she had one.

Best of luck in your decision. We are all here for you and you and your family will be in our thoughts and prayers.

Love, Barb

Hiya MJay and welcome.Although I did not end up with a colostomy there was a very real chance it could have been. My surgeon explained the posibility prior to surgery.I agree that if you are not comfortable with the surgeons sugestion--a second opinion may be worthwile. In my case my surgeon said that they would take "all" they needed to and clear margins were a priority. If there is any doubt then you need to be given the best chance possible. Take heart MJay--my friend here has a colostomy and lives in complete comfort with it.He was dx'd 18 years ago!!!!He now leads a very normal life with no evidence of cancer and 18 years ago he was not even offered chemo.He is a true inspiration to me.
Our love and prayers that you will be able to decide what is right for you, kanga and Jen

andreae

Hello!

Firstly, congratulations on the good response. That's awesome news! To be honest, I'd say go with the surgery. I was diagnosed in January 2003 with stage 3 rectal cancer. I was 20 at the time, so apparently the cancer was more aggressive. They gave me 6 wks of chemo/radiation. I then had an abdomino-perineal resection of the rectum with a permanent colostomy and partial vaginectomy. I completed 4 more rounds of 5FU. That was supposed to be the end of the regime but unfortunately on the first CT done they found multiple pulmonary mets.. I have been doing chemo (FOLFORI and FOLFOX) ever since and I'm about to go in for surgery on my lungs. To make a long story short, I believe in blasting the cancer with all they have got. I have a great quality of life, most people don't even know I have cancer! And the colostomy is fine. I really don't have a single regret about my protocol.

This is just my opinion, but I do think surgery is the way to go... Listen to those instincts. I wish you all the best and hope you heal well. You and your family will be in my thoughts.

Be well,
Andrea

RunnerZ

MJ...I am a 41 year old survivor of rectal cancer. Diagnosed with stage 3 rectal cancer at the age of 36, I went through the same regimen that you did. My preoperative scope also showed no tumor, but the Dr. was clear about the fact that I WOULD have surgery, regardless of what the site looked like. Only upon a pathology of the removed tissue can they ascertain whether the reponse to the chemoradiation was complete. So I had the surgery, and although spared a colostomy, I have a drastically reconfigured system that is a bit of a pain at time. However, now "cured" after 5 and one-half years, I would say all the treatment adn surgery was worth it. If you were older, some Dr.s might let you rol the dice on the surgery, but at your age. However, you might want to speak to a second surgeon to see whehter there is any way to preserve the sphincter muscles. The ability of surgeons to do that is key, from my reading on the subject. Meanwhile, you should be thrilled that our preoperative treatment worked so well...studies show that such a response is a key factor in survival in rectal cancer. Good Luck!

steved

I am 31 and was diagnosed with stage 3 rectal cancer in Feb this year. I am one month post op now. I too had chemoradiation with a goodresponse- the scan after it showed only scar tissue. The op went well but did show two small islets of cancer cells and few cells in the lymph nodes- all of which were too small for the scan or naked eye to see but which would all have grown back if not removed. I will now have 6 months chemo to pick up anyhting left behind.

It is bloody scary all this treatment and the op is no walk in hte park and was more of a challenge than I had realised. But the op is the biggest factor in fighting this cancer. The other treatments help the prognosis but it is the operation that is most likely to make a difference. There are occassional cases of total cure with chemoradiation alone but they are rare. It is common though for stage 3 to be cured by chemoradiation plus surgery. You are young and are likely to recover well and have so much to live for- my photo of my three month old son next to my hospital bed got me through many bad times on the ward. There are no gurantees in this game and I still regularly have doubts as to whether all this treatment and fighting is worth it but you do need to face up to whatever gives you the best chance of being around for as long as possible.
Feel free to email me if you want more info or jsut want to off load any worries. Hope this helps,
Steve

nanuk

MJay: If there is no tumor, and chemo/radiation has eradicated the tumor, why does your surgeon want to remove a healthy rectum and anus? Am I missing something?Where was your tumor? Bud

grandma047

Mjay, I had surgery fro rectal cancer in July, 2003 and no chemo or radiation. My cancer came back in Jan, 2004 and I had pre nsurgery chemo and radiation. I was told that my tumor was at the site where I was sewed together the first time. After chemo and radiation, it was just scar tissue, but I still had to have the surgery. They have to make sure no lymph nodes are involved and the have to make sure they have clear margins around where the cancer was, so they have to do the surgery. I was given no choice about that. I asked the surgeon about skipping the surgery and he said it would be a terrible way to die. I am 50 and feel that I am also too young to give in to this beast and as you will read in prior posts, I went thru "hell" after surgery. I spent 2 1/2 months in the hospital with one complication after another, but I was determined to fight, no matter what it took. I'm glad I did now. I still am pretty much pieced together, but I'm alive. I do have a permanent colostomy, which I'm beginning to get used to. One thing about it, you don'/t have to search for a bathroom every where you go. LOL> Good luck to you. You can always come to this site and get help with any questions you have. They have been angels to me. They prayed and wrote emails and stayed in touch with my daughter while I was in the hospital. I don't know what I would have done without them. Keep us posted and I will start praying now.
Love and prayers, Judy(grandma047)

MJay

nanuk said:

MJay: If there is no tumor, and chemo/radiation has eradicated the tumor, why does your surgeon want to remove a healthy rectum and anus? Am I missing something?Where was your tumor? Bud

He is not postivie there are no cells in the scar tissue. And to be absolutely certain he believes the only way to go is to remove the whole rectum and anus and have the back of my vaginal wall rebuilt. This is one of my zillion questions for him whenI see him next week. Also, if I am going to have chemo for the next 4-6 months to attack any cells still in my body... doesn't it attack the cells in my rectum???? Another ? to add to my list!

taraHK

Hi MJay,
I was diagnosed with Stage 3 rectal cancer at age 44. I have two kids. I had chemoradiation then surgery, which resulted in permanent colostomy, then 4 months chemo.
I am very glad I had the surgery and the postop chemo. It is wonderful that you had a good response to the presurgical chemoradiation but, as you know, they cannot know for sure that all the cancer is gone until the biopsy. And it is important to check the lymph nodes (in my case, one was positive). The postsurgical chemo is important to get rid of any remaining cancer cells which cannot be detected by eye or instrument.

Most leading cancer centres try their very best to avoid permanent colostomy. In my case, my surgeon really tried, but the tumour was just too low -- and getting clear margins was everyone's primary goal.

I know that having a colostomy seems like a horrible thing - on top of everything else. But, honestly, I find it not so bad. I have found great support and information from the United Colostomy Assocation site (see General Discussion group). I am very active, wear what I want - it has not affected my life much at all.

I don't want to "preach", and of course it is your decision. My "guiding light" has been that I want to stay alive for my kids - I want to see them grow up. For me, the colostomy has been a small price to pay.

This is such a tough time. My prayers and best wishes go out to you.

Tara

crazylady

I was diagnosed with rectal cancer in March of this year. Had radiation and chemo prior to surgery which shrunk tumor by half. Not having surgery was never an option, but the extent of the tumor was somehow not evident in all the scans. I ended up in surgery for 9 hours and have a permanent colostomy. Going in to surgery, the surgeon thought that there was an 80% chance of not having my rectum removed and a permanent colostomy. I am 47, have 7 children and 2 grandchildren. I am glad that I had the surgery as I am now cancer free and back on chemo for 6 months as a precaution. I want to do everything possible to make sure that I am here to see everyone in my family grow up!
Good Luck!
Jamie

Lisa Rose

crazylady said:

I was diagnosed with rectal cancer in March of this year. Had radiation and chemo prior to surgery which shrunk tumor by half. Not having surgery was never an option, but the extent of the tumor was somehow not evident in all the scans. I ended up in surgery for 9 hours and have a permanent colostomy. Going in to surgery, the surgeon thought that there was an 80% chance of not having my rectum removed and a permanent colostomy. I am 47, have 7 children and 2 grandchildren. I am glad that I had the surgery as I am now cancer free and back on chemo for 6 months as a precaution. I want to do everything possible to make sure that I am here to see everyone in my family grow up!
Good Luck!
Jamie

Hi MJay,

Well I figured I better add my name to this ever growing list.... My name is Lisa and I had my surgery March 20, 2002. I was diagnosed with a stage 3 rectal cancer with 10 positive lymph nodes. Like most of the others treatment was followed with chemo & radiation. My main goal was to do what ever it would take so I would be able to raise my son who was 10 at the time.
Life is wonderful again and I am so happy just to be here.

Lisa

Biancia

Lisa Rose said:

Hi MJay,

Well I figured I better add my name to this ever growing list.... My name is Lisa and I had my surgery March 20, 2002. I was diagnosed with a stage 3 rectal cancer with 10 positive lymph nodes. Like most of the others treatment was followed with chemo & radiation. My main goal was to do what ever it would take so I would be able to raise my son who was 10 at the time.
Life is wonderful again and I am so happy just to be here.

Lisa

My husband was diagnosed with stage 4 rectal cancer in May, 2004. The cancer had spread to nodules in both lungs. After 6 weeks of chemo & radiation the rectal tumer had shrunk so much they coulnd't even see it on his CT but the nodules in his lungs have gotten bigger. Is there anyone out there who has or had stage 4? I'm terrified. Thank you.