hello everyone. i'm brand new here although i've been "lurking" for several months. i've posted a couple of times on other sites, but mostly i find myself more comfortable reading the threads and educating myself about a disease that was not even on my radar when my (then 22 year old) daughter went for a colonoscopy to dx what the gastro felt was some irritable bowel. that was april 8, 2005, a friday. the results of the colonoscopy were devastating but this wonderful gastroenterologist got us a ct scan appointment on tuesday and had us in to see the chief of surgical oncology on thursday, although my daughter, at that time, had no insurance.
cancerdad, your posts are what inspired me to finally write. my daughter's diagnosis is exactly the same as yours. stage 3 rectal with 6 positive nodes. my heart goes out to you as i read everything you've been through and all your ups and downs. your spirit shines through. you are so knowledgable about this awful disease and i appreciate your posts.
my daughter has truly been our inspiration over this past difficult year. she has spent 27 days in the hospital. 10 of those days were with a raging infection in her lymph nodes near the tumor as a result of a transrectal ultrasound with needle biopsy that was done to dx the stage of her disease. not only did she get this infection and spend days on a morphine pump, the top specialist that did the procedure, biopsied the wrong nodes! (another story) she's had 3 trips to the emergency room and a week in the hospital with c-diff (intestional infection). all this before she even had her surgery! she had chemo, surgery, 6 weeks of radiation with continuous 5-fu and more chemo, just 2 more to go. through it all, she has kept up with college and will graduate on may 18th as an engineer! her first scan since before surgery was ned and we pray things stay that way!
thank you for letting me ramble on. i just felt the need to share my daughter's story. all of you, patients and caregivers alike, are warriors with inspiring stories of your own. i have learned alot from you!
cancerdad, you rock (as my daughter would say)! i hope you have only good news coming your way.......
Your daughter is an amazing person!! I can't get over the fact that even though she's been so horribly sick, she's still managed to keep up with college and will be graduating this month! You sound like a very caring, supportive mom and your daughter is very fortunate to have such a wonderful mother as you! Bless you both and congratulations to your daughter on her graduation!! I hope your daughter stays cancer free!!
I hear messages like yours occassionally and it just warms my heart to know that I have helped at least one other person. I have to remind myself when I read messages like yours and say to myself "who's CD or CancerDad," and then I realize it's me and just feel all warm and happy that I have helped another, by inspiring them to get tested, or fighting this horrific disease. It is a terrible disease, often times not diagnosed in younger people because it's thought to be an "older person's disease." Well, we can see by the many messages here that it's NOT. Colorectal Cancer does NOT discriminate when it comes to age.
And every time I respond to messages likes yours or others, it's my way of giving back-- to help others who are going through the same thing I have. I know sometimes I can be overzealous in my responses, but I just feel so strongly to try to prevent others from going through what I have, or at least helping them to face it knowing they are not alone. In any event, I'm glad I have helped in some way. Please tell your daughter that SHE is the one that "rocks!" And to hang in and fight like heck. She will beat this and join the growing list of survivors.
She is just a couple states away from me, so if I can be of further assistance with specialists, etc., I'll do my best as they are all within reach.
Best of luck to your daughter and your family. Please keep me/us updated on your daughter's condition. Lastly please wish her a Happy Graduation for me!
PS Let me ask, does your daughter have a temporary ileostomy? If so, how is she doing with it? Also, you say she was diagnosed as stage 3 rectal (I'm assuming since chemoradiation is used in rectal cancer, not colon cancer [typically])... what was her TNM stage-- for instance, mine was T3N2M0-- T3 because they thought it broke the wall, N2 because greater than 4 nodes were involved within 5 cm of the tumor, and M0-- no mets (other than to nodes). This translates to Stage 3C. I get results of a possible recent lung met this week. How is she doing with all this?
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thank you for the kind words. i definitely plan on keeping you updated on my daughter and hopefully, i'll be able to help someone else along the way.
cancerdad, you are the exact stage as my daughter, T3N2MO. we were told there was a 50/50 chance she would need a temporary ileostomy but she lucked out and didn't have to have one.
i mentioned the procedure that she had that resulted in a terrible infection--a transrectal ultrasound with needle biopsy. has anyone else out there had this done? she was never prescribed any antibiotics before or after and it haunts me that some simple pills could probably have prevented excruciating pain, a long hospital stay, huge doses of pain meds and a 6 week delay in the start of her chemo. also, the doctor thought he was biopsing a distant lymph node that had looked suspicious on a scan but he was actually in a local node. this gave everyone the incorrect impression that she was stage 4. she was given avastin along with the 5-fu, oxaliplatin and leucovorin. we didn't find out until after surgery that she was actually stage 3.
cancerdad, you asked how my daughter was doing through all this. everyone from her surgeon, who we love and respect, to her mother (i'm now ashamed to say) told her she'd have to take a year off from school and just concentrate on fighting this disease. we never thought she would be able to continue. she refused. somehow, the timing of each phase of her treatment worked out for her. she only spent 2 weeks at home after surgey before returning to school. her 6 weeks of radiation happened to fall during christmas break. all her important exams, presentations and final papers seem to be due on her off weeks from chemo. even graduation is on an off week. her last treatment will be the week after graduation. that being said, chemo and especially radiation have been very hard on her. the treatments before surgery were especially difficult. these treatments after surgery somehow have not been quite as bad. can't figure out why.
cancerdad, you've had so many bad side effects, you could write a book when you get through all this. you've certainly educated yourself. i'm really hoping you get a great big dose of good news this week.
leslie, thanks for the info on your husband's tests. it confirms my feeling that antibiotics would have prevented alot of my daughter's suffering.
i would just like to throw this question out there again in case someone else has some more info. have you ever had a transrectal ultrasound with needle biopsy and were you prescribed antibiotics to take either before or after the procedure? i was so angry with myself, at first, because it never occured to me to ask the doc. i've worked on getting past my anger because it doesn't do any good and i need my energy to help my daughter in more positive ways. now i'm just curious.......