Colorectal Cancer Community

Hi Heather, I know exactly what you are going through. I was diagnosed with rectal cancer in October 2005. I had a 2nd and 3rd opinion because I didn't want to have a permanent colostomy bag but everyone agreed that it was unavoidable. I did 6 wks of radiation and oral chemotherapy. I had a radical rectal removal after that and I did wind up with a colostomy bag. I have to be honest with you that when I first heard about having a permanent bag...that's what actually terrified me the most. I know it sounds strange but the cancer seemed secondary. It definitely has gotten better but it is different dealing with bodily functions. I am 41 and have a daughter who is 11, two sons 7 & 6. My treatment wasn't bad from the chemo side but radiation is a different story. I would be glad to talk toyou about it if you want to. May God bless you and keep you spirits high. You can make it through this. Take care.

Mandy

Thank you Mandy, I know what you mean, I seem more worried about the darn colostmy bag than the big picture. Was your cancer in other areas of your body also? I am scared to death of the chemo and rad. I always thought the radiation was the easy and chemo was the bad!? How had your daughter dealt with all of it? I worry about my 10 year old daughter! My 4 yr old wont understand nor the baby. My husband wants a second opinion and I just want the treatments and then get it out of me. I don't want to waste time! Should we get 2nd opinion?? How is your cancer today?? Sorry for all the questions!

Thank you very much, i have found talking to others dealing with it very comforting. Take Care!

Heather custerha617@yahoo.com

My son 22, was diagnosed in April with stage 3 rectal cancer, also with 2 lymph nodes and a spot on his lever, believed to be a benign cyst.

He just finished his first round of chemo & radiation and is now preparing for August 6th surgery. His only problem with it all is his need for a permanent colostomy.

He went from 185 lbs. to 161 lbs. because of the nausea but found the drug Ondansetron helped ($2,200 drug with $210 co-pay, but check on Xubex.com and see if you qualify for PPA).

Not going to lie, its tough on everyone. Stay strong and keep thinking about dancing at the weddings of your grandchildren.

E-mail @ jdjimenez@earthlink.net if I can be of any help.

In response to your question to Mandy. My son started chemo & radiation immediately and we waited until he had a second CT scan after that treatment to go for 2nd and 3rd opinions.

Hi Heather

First of all congrats on your new arrival - your children are the one thing that will spur you on to get through all of this. I have a new granddaughter and she has proved better than any medicine!!

To cut a long story short please read my posting call ^my colectoral journey". I know the confusion and shock you are going through but it helps to keep looking for a positive light at the end of the tunnel and take each problem one step at a time. The doctors have different methods of treatment for individual cases. As mine was an emergency op I have had chemo after but I do know that sometimes they give the chemo before to shrink tumours before operating. Never be afraid to ask your GP/specialist or support nurse any of these questions. Another good tip is to start a diary of what has happened to you and what doctors have said and make a note of any questions you may have. Your memory is probably better than mine but I do find this handy when I am talking to the medics. I think the word "cancer" always puts the fear of god in us but nowadays I think we can have a lot more faith in medics with their knowledge and research on the subject. And there are a lot of diseases far more dehabilitating that this. I will not say any more than this but hope I may have eased your mind a little and the advice may be of help.

Best of luck Maxine

Thank you Maxine -

Congrats on your new granddaughter, I do believe that my kids will be my saviour during this time. I have alot to look forward to!

I have read your posting and find comfort in reading all the journeys everyone has gone through knowing how well everyone is doing. I know it will not be easy but I am prepaired to get started. I worry about mt oldest and what she will have to endure during this time, but she is a tough little cookie.

thank you so much for your reply.

heather

Hi Heather and welcome altho I am very sorry for the reason you are here. I also do know how you are feeling it is the scariest thing. Your kids will definately be the best medicines. I have 3 little grandaughters that have been the best medicine for me. I will be praying that everything goes o.k. with your doctors appt. Please let us know how it goes. My thoughts and prayers will be with you.

YES, do chemo and radiation together (at the same time) prior to surgery. Ex had rectal cancer low lying tumor 5cm covering 75% of his rectum we were told he had no choice but to get a perm colostomy, the chemo and radation completely got it, by the time we had surgery the tumor was gone, no cancer cells at all in the pathology report

There have been a lot of studies about pre op chemo and radation and the increase in survival, also some oncologists say to get post op chemo as well. I would have it was me.

Ex had a temp colostomy and had it reversed later. My ex did 6 weeks of chemo, he had a port and wore a bag of chemo 5 days a week constant infusion and did radation 5 days a week as well for 6 weeks. It knocked him down but he is alive and well. They have made wonderful advances in chemos and drugs to help with the side effects. We also did alot of juicing, apricot kernels (google it) and I tried to cut him off any preservatives just a vegan diet while he was sick.

Be aware that radaition to the rectum will cause burning and Ex now has rectal stenosis from the radiation. Your doctor can prescribe you creams for the burns.

My advice get a second opinion from a major cancer hospital and I can't express enough to use a colorectal surgeon not a general surgeon. Every general surgeon we saw gave us a 0% of life without a colostomy, yet our colorectal surgeon was able to perform the surgery.

I read you message and was touched by your words and understand the stress of being there for your children. I discovered my colon/liver cancer in 2006 and I have taken chemo and now Xeloda (oral pills) and my doctor told me that most people with rectal cancer survive 4 months. I recently lost my job due to the slumping housing market. I am depressed with the lost of my job and my recurring cancer on my liver. My colon has cleared, but the tumor on my liver is reduced and taking a CAT scan ever 2 months. The tumor reappears and it is so depressing. I pray to God and ask "Why me". I have 3 grandchildren and want to see them go up. So, I can understand your situation. I am prepared to die but wanted to know; do you fall asleep or do you suffer the pain? Please hang in there. My prayers to you. Aloha from Hawaii.....

Dear Heather,

Your story is so similar to my own. I have a 1, 2, and 4 year old and am on round 6 of 12 of chemo for rectal cancer. I have an ileostomy bag and have undergone colon surgery and liver surgery since February.

My colorectal surgeon blew off talk of chemo or radiation before surgery and now I am unable to have radiation without serious effects to my GI system. See an oncologist before surgery. In fact, see two. Always get second opinions. I have learned this the hard way.

With an ileostomy, there is often the opportunity to have it "taken down" after the internal pouch heals. Ask your surgeon. Also, I strongly recommend seeing a GI surgeon. You want someone who has performed this surgery many times. Ask him or her how often they have done it. And again, get a second opinion.

My cancer is Stage IV rectal cancer that had spread to the liver (6 lymph nodes). Liver involvement is very common with colorectal cancer. As a younger woman who has birthed 3 babies, you are strong. Colorectal cancer stage IV is still considered curable (I love that word) and is seen by most doctors as a chronic illness.

I know your pain. I write a blog that has helped me express my fear and also gain support from friends and family. It's batmom.typepad.com I strongly urge you to allow yourself some complimentary therapies: yoga, massage, acupuncture, support groups, writing groups. Find what helps you relax. I started with Martin Rossman's HEALING CANCER FROM WITHIN CD and book. www.thehealingmind.org/

Another thing, because colorectal cancer runs in your family, check that you do not have FAP. If you do, your children can be tested for it at age 8 (after they locate, through taking a sample of your blood, the gene in you). ghr.nlm.nih.gov/condition=familialadenomatouspolyposis

You are brave and you will get through this. I have a visualization of myself in 10 years that I conjure when I need bravery. I am skipping down the Champs d'elysee in Paris with my daughter ( she is 14 months old now). I see my two boys (now 2, 4) crossing the crosswalk. They smile and wave.... and allow me to hug them when we reach them (after all they're 12 & 14). We walk inside together and see my husband Tom at a big round table waiting for us. We sit, we laugh, we tell stories of the our morning adventures. We are happy. And no one has cancer.

Love and healing, Renee

Renee, Thank you so much for your post. I have found alot of peace from the posting of everyone here and hearing of everyone's journeys. I see an oncologist today for the road map of my treatment. I dont mean to be nosey but How old are you, I assume around my age (34) by the ages of your children. How have you tolerated the chemo so far? That is what scares the daylights out of myself right now. I know that part is the least of my worries, I just worry about my daughter seeing me so sick and not being able to hold my baby during this time because I am so sick. I have read, though, that many people have just a few of the side effects. So, that is what I have been praying for.

I find myself reading every possible blog, post anything these days. I try to ignore the bad and concentrate on the good ones. I have friends sending me info on herbal and homeopathic vitamins anything they can possbile find that they have heard about to cure the Big C. I love them all dearly, and maybe if I was in a different place in my life I might give it a shot but I feel like I dont have time to waste and need to start treatments now!

I have been through alot as a young child and during my pregnancies so I am looking at this as a new bump in the road. I made it through Hell and back as a 4 year old and later in life, I can make through this too. My mother always tells me "God doesn't give us more than we can handle". (although sometimes I differ with her on that).

I will keep you in my prayers.

Sorry to be here--but my little brother, age 33 has been diagnosed with colorectal Ca--we are waiting to meet with the oncologist this wk--but I am so scared. Will anyone help my family and especially my brother through this???Thank you. Charlotte

I was diagnosed with ALL acute lyphatic leukemia when I was 10, and was very proud of being a 35 yr survivor when I was hit with coloretal cancer. I thought I had it made my son who I wasnt supposed to have was about to be 18 and graduate high school. Then bam I was facing cancer. chemo and radiation again and add surgery and a colostomy to the mix. that was almost 2 yrs ago, I was determined I had beat it once Id do it again. 2 days before scheduled surgery my colon ruptured. the surgery was a success, the chemo and radiation was a breeze compaired to what I went through as a child. I had a complication from radiation scatter that damaged my left uriter and have a nephostomy tube to drain my left kiddney. thank god for my family and boyfriend who have been there through it all.
They are preparing to resect my colon to get rid of the colonoscopy and trying to find a way to to fix my uriter. what I find helps is when im down and feeling hopeless I look around I alwys find someone worse off than me.

dear custerha617, My heart goes out to you and your family. I was diagnosed with rectal cancer in january 11, stage 2. a tumor in my rectal. I thought that's it my life is over I did 6 wks of chemo and radiation,rest a month and on july 20, I had my surgery, I didnt know until my husband and mom told me that I had 2 surgery. I couldnt believe it!!!! I'm thinking my life is over cause I have to wear a bag for the rest of my life and I'm 47. But I'm bless and thankful cause I have a big family 4 daughters and 14 grandchildren and my church family. and they support me 100%. I have to rest a month and then another couple of wks of chemo. But I'm cancer free. I wish you all the luck and be praying for you.