CSN Login
Members Online: 8

You are here

New to site

Faith4Cure
Posts: 405
Joined: Mar 2007

Hello all. I am new to this site. Looks like a good place to talk to people going through the same stuff. My husband was dx with rectal cancer last september. At 44 and seemingly very healthy, we were shocked to be told that he had stage III colorectal cancer. We have 2 school age children and we felt like the bottom fell out of our world. Fortunately, my husband is probably the most optomistic person I know and has coped with this problem better than I could've hoped for. We travel to the Mayo clinic in Rochester for treatment.He had 6 weeks of radiation and chemo every day followed by surgery and an illeostomy. He is now going through another round of chemo, having 1 treatment every 2 weeks, carrying the wonderful fanny pack thing for two days. He continues to do well with treatments but is starting to get tired of the whole thing.I have learned so much from this whole experience and appreciate every day. I keep wanting someone to give us a guarantee so I don't have to worry about this for the rest of our lives. I keep asking about statistics, and then I decide I don't really want to know. I can't imagine not getting through this. I wonder if we will live in fear for ther rest of our lives.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Hi,

Most of the stats are old. You will get less and less fearful each day. It has been ALMOST 4 years since my diagnosis of stage 3 rectal on 3/17/03. I never thought I would get better--chemo/rad., 3 surgeries, 11 hospitalizations yikes-- it wasn't easy. But I am very much alive and thankful for everyday I have with my family. I just turned fifty and will celebrate my birthday all year.

Welcome to our site that noone wants to join.

there are many long term stage 2, 3, and 4 survivors,

Maureen

Faith4Cure
Posts: 405
Joined: Mar 2007

Why all of the hospitalizations and surgeries? Are you free of the disease at this point? You are almost at the 5 year mark!

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I am almost at the 4 year mark, I wish it was 5. I had the first surgery with cancer removed and temporary ileostomy. I was then hospitalized twice with bowel obstuctions. I then had the reversal done, that makes my fourth hopitalization. I went back on chemo and diarrhea so bad I was in hospital again. I then had a couple more bowel obstuctions. I contined with diarrhea and bowel disfunction and then had a colostomy done in 1/05 to get my life back. It took 2 more trips to hospital after the surgery because my bowels were slow in moving and I couldnt eat. I then had another bowel obstruction. I think that accounts for all the admissions. I have been cancer free since my surgery on 6/26/03.

feel free to email me through this site

Maureen

Faith4Cure
Posts: 405
Joined: Mar 2007

It sounds like things are going better for you now. Happy to hear that you are cancer free. I was told that the first 2 to 3 years are the years most risky for the cancer to return. Hopefully you are through all of that.

taraHK
Posts: 1961
Joined: Aug 2003

Welcome to this site. I am sorry for the circumstances that brought you here. I hope you find, as I have, that this site is full of great information and warm support. My situation is very similar to your husband's. I was diagnosed with stage III rectal cancer at age 44 with two school aged children. I also had chemoradiation followed by surgery (with colostomy) and then more chemo. Unfortunately I've had a couple of recurrences but I'm still going strong -- coming up to 5 years post-diagnosis. Does the fear ever go away? I don't know. But, I do know that a positive attitude helps -- and I'm happy to hear your husband has that. Feel free to come here with any questions or concerns.

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

It will get better. I do not know if the fear will ever go away....but it WILL get better...Like Moesimo just said, the stats are old...Avastin and much more new treatments were not available before...Stay positive...and God bless

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Faith,

Welcome. I understand your fear and shock. I also went to the Mayo Clinic. The place runs like a Swiss watch! I love my onc!

I assume you are in MN? I am and getting hit by that enormous snowstorm that has not let up for 6 days. Our drifts are huge!

Anyway, I too had Stage III colon cancer (sigmoid). I was 39 at dx and was nursing my 20 month old--my 5th child. It turned my world upside down. But that was 5 years and 7 months ago and I have remained cancer free for all that time.

I highly recommend a book that helps in figuring out some really good supplements to augment chemo and radiation. It's called Beating Cancer with Nutrition by Patrick Quillin, PHD, RD, CNS.

I told my onc at Mayo that every patient walking out of his office could benefit from this book.

As for the fear--it comes and goes but it does lessen over the years. We seem to always be "on guard", but the gut wrenching fear will subside and ease into a more shadowing fear--that's how it is for me. It will be interesting to see how others deal with the fear.

Stay safe if you're out in this snow!

peace, emily who lives in the Northwoods!

Faith4Cure
Posts: 405
Joined: Mar 2007

2bhealed,
Thanks for the encouragement. We love the Mayo clinic also and never regret the choice we made to go there or the 3 hour trip each way to get there. We live in Iowa and we are getting lots of snow this week too. In fact my office is closed today and I get to stay home!

It helps so much to hear from other cancer patients like yourself. I'm sure this did turn your world upside down. With 5 kids to worry about, not to mention a baby, you had so much on your plate.

I will definitely check out the book you recommended. I've read some things about diet, but I'm not sure what to believe. Does this book talk about avoiding sugar and processed foods?

My husband leaves all of this research stuff to me. I also told him to leave the worrying up to me too because I have been so good at it. He doesn't worry too much which is good. He stays very positive and after 23 years of marriage, I am still learning from him. This experience has taught us so much and I have actually become less of a worrier. His attitude will help him so much. It sounds like yours has too.

Thank you so much.

oneagleswings
Posts: 425
Joined: Jan 2005

Hey- take "fear" ..put it into a bucket..give it a good solid kick and then be done for it...fear is natural but also destructive...visualize your husband being well..believe in it.
Bev

Faith4Cure
Posts: 405
Joined: Mar 2007

oneagleswings, thanks! I do believe!

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Ahoy, Faith -

Statistics are for the Vegas odds-makers. The odds were that your husband wouldn't get cancer at such a young age. Everyone is different and unique. Even iff the odds are one in a million, you can always be that one that stands out from the million.

As for getting tired, yep - it's normal. Chemo treats everyone differently, but one fairly consistent reaction is fatigue. Believe it or not, a good routine exercise program (even 30 minutes every other day) can help combat the fatigue and also help with depression which is also common to cancer patients.

As far as living in fear... maybe apprehension is a better word. Once the chemo is done and you're a couple of years out, the fear will diminish - but probably never really go away. I am coming up on 5 years out of treatment and still get concerned sometimes. It's normal. Just remember that life is better spent living than it is worrying!

Keep a good attitude, and be kind to one another.

Cheers

- SpongeBob

Lisa Rose's picture
Lisa Rose
Posts: 594
Joined: Mar 2003

Hi Faith4Cure,

Welcome to our CSN family.

At age 40 I was diagnosed with rectal cancer Stage 3c with 10 positive lymph nodes. My surgery was on March 20th 2002 yes that's almost 5 years ago. To this day I'm doing very well with no recurrences ( knock on wood ) and life is wonderful again. No one can give any guarantees you just have to take it one day at a time and trust me each day will become a little easier.

Have Faith,
Lisa Rose

MCarr's picture
MCarr
Posts: 20
Joined: Feb 2007

Welcome to the site. Like everyone else is telling you...Statistics are old. They are old by definition, for a stat on 5 year survival rates the group in the study would have been treated 5 years ago.
Just my opinion, but Rochester is a great place, They saved my life in 2000 and again in 2002. I have spent a ton of time in the clinic walking the underground halls, slowly!!! They took my case when everyone else said surgery was NOT an option and that was 7 years ago. I have had numerous stays and 4 surgeries there. Everyone I encountered was wonderful. I am 44 now with 2 school age children (preschool) and NED, although still anxious before every test. I believe that we will have fear and anxiety for the rest of our lives, but we learn to live with it and NOT in it.

katefm's picture
katefm
Posts: 112
Joined: Oct 2006

Hi Faith-

Sounds like we're riding the same track. My husband was diagnosed with Stage IV in September. We're in WI, but we go to Sloan Kettering in NY and get chemo locally. We should try Mayo at some point.

I sometimes wish there was a guarantee, too - we have two little ones as well. (A 3yo girl and a 9mo boy).

Don't look at the statistics. They don't apply to you or anyone else on this board, for that matter. Statistics don't take a lot of things into account, like attitude, support networks, etc!

You are in my prayers. Email me on this site any time. I'd love to talk to another caretaker with young kids!

Kate

Faith4Cure
Posts: 405
Joined: Mar 2007

Thanks Kate,
Sorry to hear about your situation. My kids are older (13 and 17). I'm sure you have your hands full.
I don't know much about the different treatment centers, I just knew the Mayo clinic was a good choice. You are traveling a long ways for your doctor also. Tell me about Sloan Kettering. Why did you decide to go there? I hope we made the best choice for our situation.
How is your husband handling the treatments? I hope he can stay positive. I do believe that attitude can do so much! I am so lucky in that way. My husband is being the model patient. sometimes I feel like I am the one that needs the encouragement!!!!!
Your family is in my prayers. Give your kids a hug!!!!

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Hi Faith,
I guess thats what it is all about,having faith that your husband can beat this. I can give you some hope ,I was dx st3 des colon in 98 at age 48. Six nodes were involved. I had surgery and 12 mos of chem, I have had no further cancer and am considered cured after 9yrs+. TRy not to spend your time waiting for the cure,the journey is far more important than the destination. Best wishes Ron.

Anonymous user (not verified)

This comment has been removed by the Moderator

hopefulone
Posts: 1048
Joined: Jan 2007

Hi , welcome , but I'm sorry you have to be here. My husband dx stage IV with liver mets. It came as a huge shock 2 mos ago, (no symptoms) routinely discovered. Don't pay attention to statistics. Every individual is different. You've come to a great place for support. There are many encouraging personal experiences here. There are no guarantees in life with or without a "diagnosis". I don't think the "worry" will ever go away once you experience this, but don't let it consume you. God Bless and keep the faith.

Ginny5
Posts: 10
Joined: Nov 2006

Hi. My husband was diagnosed at 46 July 06 with rectal cancer. We too have 2 school age children. Had no symptoms, told by his Fathers doc. all children over 35 should have a colonospy and there it was. He also has had an amazing attitude; we were at the hospital having the first chemo. appt. and my husband joked that it was difficult to tell who the cancer patient was! Many professionals have told me that they think it is harder for the spouse. Anyway the day I turned around was the day I found this site. There are many inspiring stories and I have found this site very helpful when I have questions to be answered. I didn't beleive people when they said in the beginning that everyone is an individual and that you can't go by the stats but now after this journey I will say I think it is completely true. My advice is to not focus on the stats which I did in the beginning. For me I have an understanding of what each stage of cancer means or can mean and I now leave it at that, every case really is individual. It has been important to me to talk to people going through this, my husband has never wanted to do this. I have talked with people who have had stage III colon cancer one person had 11 positive lymph nodes and is now 11 years clean and I met a gentleman who had stage 1 colon cancer (if you go by the stats he has a 98% chance of a five year survival) and his future is not optomistic. My husband has two more chemo rounds to go through and then an operation in May to reverse the illiostemy. Does the fear go away. Personally, I don't feel fearful (beleive me I did) but I think of it every day and I think I always will. I get scared when we get results of things or when there is an appointment and think how will we deal with bad news, and then I think well we've dealt with everything so far and we'll deal with something else if that something else ever happens. Before the operation I also wanted a guarantee and I kept pushing the doctors for answers which they couldn't give me and that has been the hardest part the not knowing but somehow I have got my head around this. (his MRI showed suspicious lymph nodes in and out of area but pathology came back negative. We may never know if nodes were positive because of the pre op. chemo/radiation).I see a professional to talk with and that has helped me with my anxiousness. We have also invested in a high quality juicer, which I think will help to keep us all healthy. Your husbands chemo. is different than mine. We are in Canada and his post operative chemo is five days then 3 weeks off for four months. What chemo drugs is your husband getting? Good luck, I am happy to answer any questions.

Faith4Cure
Posts: 405
Joined: Mar 2007

Hi,
Thanks for the reply. It sounds like we have about the same schedule. My husband has 3 more treatments to get through and then he will hopefully have his reversal in Mid May also. That is one surgery that he looks forward to.
The chemo that he is on now is Folfox (Eloxatin, Luekovorin and 5FU) He gets it once every two weeks and goes home with the pump of 5FU for 2 days.
The biggest concern that I have right now is that his liver enzymes numbers have gone up a lot. I'm not sure if his chemo is just hard on his liver or if there would be mets to worry about. He is also on a cholesterol lowering drug (Lipitor) that may be causing problems. Always something new to be concerned about. We will hopefully find out in two weeks what is causing this. Good luck to you,

jams67's picture
jams67
Posts: 927
Joined: May 2006

Remember as far as statistics go that they are including a lot of people who didn't get treatment. Mine (stage iv) wouldn't have been discovered until it was too late, if not for a routine colonoscopy. I was in great health otherwise.
It will be interesting to see how the stats change when they are updated. However, I don't know if updating is ever possibe, because by that time, they'll be behind. I'd hate being a statistician!
Don't forget that even though your husband has a great attitude, that he will still need to cry on your shoulder and whine occationally. I'm sure he appreciates what you are doing more than you can ever begin to imagine.
Glad you found us,
Jo Ann

Faith4Cure
Posts: 405
Joined: Mar 2007

Thanks to all of you!!! I really do appreciate your support. I don't like to let my husband know how worried I am. It is very inspiring to read about everyones journey. This site is so helpful......glad I came!

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

Welcome I have Stage IV colon cancer dx in April 2005. I'm working on my recurrence and I have one more chemo to go. Everyday I keep the faith and think this is the day that it will all go away. I'll have my scans in April to see where I'm at.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Hello!

You mention you live in Iowa. Anywhere near Illinois border? I live in Indiana and had my surgery done at the University of Chicago Hospital. They were amazing. That was over 5 years ago from stage 4 cancer, and I have been clear ever since. I was 33 when diagnosed.

After getting over the initial shock of diagnosis, roll up your sleeves and tackle this head on. You and your hubby will get loads of opinions and support. Find that perfect balance of listening to your docs and your heart and you'll do just fine.

Let me know if I can help you further. This web site has an e-mail system where you can e-mail others here.

Best wishes,

Stacy

Subscribe to Comments for "New to site"