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What do you think you did that help you beat this disease?

ac
Posts: 84
Joined: Aug 2008

Hi,

I am recently diagnosed with rectal cancer in August 08 (likely stage 3). I just started neo-adjuvant radiation and chemo today and am interested in what you think you did that helped you beat this terrible disease. So the question for all survivors out there, is what things you did (maybe list the top 3 or more if you wish) to help you beat this disease?

If you could also include your staging, that would be great. I wish you all the best and thank you very much for your help.

Andrew

taraHK
Posts: 1961
Joined: Aug 2003

Hi Andrew,

What a great question. I am already looking forward to reading everyone's responses. Let me put in my two cents worth:

1. After diagnosis, I sought out a second opinion. (The recommended treatment was totally different, and may have saved my life).

2. I chose to be actively involved in decision-making. Did a lot of research about different treatment options, asked a lot of questions, engaged my doctors in discussion. Did this make a real difference? I don't know. But it was important to me.

3. Kept my focus on what was important to me. For me, this meant my kids (age 10 and 12 when I was diagnosed - now turning 16 and 18 - yea!). I want to be alive for them as long as possible, and I also want them to enjoy fun, normal times. This 'guide' has helped me a lot.

4. Tried not to let cancer/treatment dominate my life, or the life of my family/friends. Tried to do and enjoy normal things as much as possible.

I knew I wouldn't be able to list just 3!

Tara

jonsachtjen
Posts: 3
Joined: Sep 2008

A few that come to mind...

1) Attitude. Stay positive. It's hard to do sometimes, especially when you're staring down the barrel of a chemo session, or being rolled into a white room for a rather unsavory operation. Just the same, it really does work. Gloom and doom is not the answer- and remember, your loved ones take everything to heart. The slightest wince makes their heart drop, so if nothing else, try to keep a smile on. I'd bet my life on it's merit.

2) Drink aloe juice. It helps with the nausea, even if it tastes kind of bad. I bought a plant and it pretty much takes care of itself. Just fillet the tough skin off, throw it in a jug of water, let it sit for a while and pinch your nose when you drink it. :) There's a lot of conflicting facts written about its effectiveness, but it worked for me, especially at the beginning of chemo.

3) Have an advocate, and stand up for yourself. Remember that while doctors are usually very qualified, they are still reacting to protocol of tests that are 7 years out of date by the time they are put into use. What works for the average is not necessarily the best route for you, so don't be afraid to ask what plan B is. A real doctor will understand this. And also, never be afraid to ask your oncologist what he would do if he had a tumor in his butt. If it resembles what he sees for you, you can expect to be on the right track.

Keep on keepin' on!

rmap59
Posts: 266
Joined: Jun 2007

1. Old cliche but in my case Knowledge WAS Power, I researched and read everthing I could, talked to people that had been there done that(a lot were here).
2. I was very proactive in my treatment and recovery asking lots of questions and calling the doctor any time I needed answers.
3. Focusing on myself and my needs(I have always been The Fixer for my family), without being selfish I resigned as manager of the universe and just managed myself until I recovered.
4. Oops and last but not least my faith in a higher power, knowing that no matter the outcome it would be good. You could call this attitude.

Thanks for the question, I too look forward to reading the replies.
Robin
Rectal cancer 2007, no more.

4law's picture
4law
Posts: 112
Joined: Dec 2004

Luck

It was luck that caught the cancer at an early stage before it invaded too far into my system. After that fateful visit at my doctor's office with my wife, learning that I had cancer, and being told that I would have surgery to remove the tumor after several weeks of testing, chemo/radiation, I remember turning to my wife and telling her that I just couldn't deal with the stress of making appointments and more decisions necessary to find 2nd or 3rd opinions. We made a gut decision that we would stick with my doctor, a colorectal surgeon. He referred me to a top notch radiation oncologist and oncologist, all at the same hospital, which happened to be close to my home.

It was luck that the chemo-radiation shrunk and destroyed the tumor and luck that the 21 lymph nodes removed with most of my rectum were negative for cancer. It was luck that my ileostomy was able to be reversed although the tumor was fairly low. I am lucky that after months of post surgery chemo my CT scans and colonoscopies have shown NED. I was diagnosed in Sept., 2004. I feel I have beaten this rotten, horrible disease.

Luck and good physicians, nurses and great support from my wife, family and friends. I read so many stories of other group members who have shown courage and have beaten all odds against them, but also I read about others who haven't done as well. I don't see any rhyme or reason. You posted a great question and I will keep checking in to see how others answer. One thing I learned, however, is NEVER GIVE UP.

Faith4Cure
Posts: 405
Joined: Mar 2007

Andrew,
My husband was diagnosed with stage III Rectal cancer in September of 2006. It was the scariest time in our lives, however, we got through it much better than expected. It has been two years and he is doing great after many obstacles. I know there are many factors that help beat this beast, but these are the top on our list.

1) ATTITUDE My husband has always had a very positive attitude and this was no exception. I have to admit, I didn't always have the attitude that I should have had. He has taught my family so much about attitude and this terrible disease. I know he felt lousy at times, but he kept the faith and knew it would all pass.

2) Find the doctor and treatment center that you are comfortable with. My husband's first doctor had a treatment plan that we didn't feel comfortable with. We found another doctor (even though we had to travel a distance) that made us feel more comfortable and helped avoid a permanent colostomy.

3) Ask questions and keep informed. The more we know about this disease, the better we can help ourselves.

4) Try to reduce your stress. We were always running here and there trying to fit so much into our already busy schedule. Slow down and take care of yourself!

And above all, have faith! You will get through this----you just have to BELIEVE IT!!

Faith

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Survivor of cc since August 12th 2004, recurrence in 2006, still kicking
1) Faith that God has a purpose for me and it just isn't my time yet
2) Finding humor in all this. Helps tremendously for me AND my loved ones that I don't take this too seriously.
3) Information and LOTS of it! I found everything I could online, ignored those *&^* statistics and participated in a survey project that was seeking information on how to reach other survivors.
4) Maintaining a journal on CaringBridge.org so my loved ones can know how things are going without having to call me (sometimes i couldn't speak because of the decadron or was just too tired!)
5) Letting a friend take charge of arranging help for me, including transportation to and from treatment, sitting with me treatment night to be sure I ate, checking up on me through the week, lawn work, house work, food, you name it! I didn't have to worry about remembering, didn't have to worry about finding people to help. Dena was a GODSEND!
Mary

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Thank you for starting this topic, Andrew!! This is the kind of information more and more of us need... to continue fighting the good fight! We need to know that people do survive this disease even if they have recurrences after they thought they had beaten it! And to see the common threads in what people are putting down here.. very interesting! It appears that having a GOOD ATTITUDE and looking after YOURSELF and not continuing looking after everyone else, seems to be a common thread.

I'm still fighting the battle. I was diagnosed with Colon cancer, Stage III in December 2006, had the surgery, 8 months of chemo and 6 weeks of daily radiation in 2007. We have now found a 14mm lesion and 4 small (under 5mm) spots on the lungs. So we are just beginning to get some treatment happening. First, I'm scheduled for a PET scan on Oct 1st to check to see if there have been any new occurences in the last 5 months since the last PET scan.

So, at the moment, I can't answer your question here since I'm still fighting, but definitely I would go with:

1) ATTITUDE makes all the difference in the world
2) KNOWLEDGE - arm yourself with not only knowledge about the disease itself, but networking with others and what they have gone through and continue to go through.
3) HOPE - never ever give up hope!

kmygil
Posts: 881
Joined: Feb 2007

Hi Andrew,

First, I'm sorry you are fighting this disease, but I'm glad you came to this site. You asked a very good question. Here's my take on it:

1. Research your disease, ask questions of everyone-doctors, nurses, fellow patients. A doctor who gets defensive or obnoxious if questioned is not a doctor you want.

2. Get a really good support base. My friends and sister were my mainstays. My husband was a wreck and not good for much except negative vibes, so surround yourself with positive people and energy

3. Attitude. Sometimes I think that attitude alone can beat this beast into submission. No, not really, but if you are low and have a negative attitude, you can submerge into depression which DOES take a physical toll and uses energy you need to fight the cancer. I found that antidepressants made a world of difference.

4. Watch and ask. I had one unfortunate experience where the wrong meds were hung for my drip, so verify that everything going into your body is the correct thing.

5. Don't be afraid to ask for help. Friends and family feel so helpless in the face of cancer. Usually they welcome the opportunity to do something, anything, to help you fight it. Sometimes I think it's harder on them, because they can't DO anything to make you get better, and they really want you to get better. So accept and ask for help.

That's most of it. The physical aspects of treatment are what they are, but the intangibles are also very important. Keep your spirit uplifted. I am praying for you.

Hugs,
Kirsten

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi,

This is a good post and I agree with what others said. I was dx and had tumor out on my birthday Dec. 2005 and coming up on 3 years NED!

1. Attitude is top on my list. I was sure I was going to beat this since I promised my kids I would be around for them. I'm usually an upbeat person and this tested that.

2. This site!!! All the people on this site and the chat helped keep my attitude up and me going. I learned a lot of information here after I had my tumor removed and continue to learn and hopefully give back some.

3. Find a doctor that you are comfortable with. My first onc made me feel like a number and a paycheck. I got a second opinion and I'm not sorry I did. He and his nurses were GREAT!

4. Your family. My kids helped me through this. When dx they were 18, 11 and 10. HUGS from them made me realize what was important in my life.

5. Keeping positive people around me. This is the hardest to do depending on family (for example my soon to be ex husband) but it is necessary. It is hard to get through this and be positive and even harder when you have those 'doom and gloom' personalities around!

Lisa F.

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Hello Andrew.

Glad you found this site. It is such a big help to all that come here.

I was Stage 3 colon (Ascending). 12" colon removed. 12 rounds of chemo. As of this past December I am NED! (No Evidence of Disease. I like that better than the word Remission)

1) ATTITUDE. Don't look back. Keep your energy for moving forward. You will need that energy. You can have your "pity me" days BUT...don't let them last. I would have one day (maybe two) right after chemo. Then a few days after, I'd say "enough of that".

2)REST. Your body will tell you when, trust me. I was one that never took naps, would always be "puttzing". While on Chemo, you can't always keep going. You've got to sit down and rest. That's part of the healing process soooo Just Do It! >>>>grin>>>>

3 WATER, WATER, WATER. Drink lots of water. Get those toxins out of your body.

You are stonger than you know.

Best of luck to you. Keep up posted on now you are doing. We are here for you

Claudia

ac
Posts: 84
Joined: Aug 2008

Thank you very much for the encouragement and prayers. It means so much considering that it is still so early in my journey. I can't help but admire anyone who's had the courage to battle this. Looking forward to more great, useful advice from the survivors out which can also help others besides myself.

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

Hi Andrew,

Welcome to the boards.

Stage III sigmoid colon cancer, lymph pos, zero mets. Declined adjuvant chemo of 5-FU and leucovorin. For this reason it's a difficult question to answer because I did so much. I will try my best to narrow it down.

1) NUTRITION -- colon cancer is 80% dietary so that's where I started. I became aware of balancing my pH since cancer prefers acid and cannot live in an alkaline environment. I started juicing fresh organic veggies and drank up to 3 quarts a day....lots of greens. GREEN = LIFE

2) DETOXING -- I cleansed my body, mind, and spirit. I rid myself of toxins -- getting my amalgams removed, did organic coffee enemas, ingested no animal products for 6 months, juiced, ate macrobiotically etc. I got rid of toxic people and gravitated towards uplifting and positive people. This would encompass having a good attitude that others have mentioned. It's hard to maintain a positive attitude if you have a bunch of Eeyores around with their black clouds. I also did some very deep emotional cleansing getting rid of toxic emotions through body work, accupuncture and massage along with counseling and journaling. Getting to the ROOT problem, I believe, is imperative in cancer healing. Cancer is a symptom of a deeper problem on all three levels. (mind, body, spirit). As for detoxing the spirit, I rid myself of dogma and just clung to my Creator, who for me is Jesus. Detoxing the spirit is easier when the other two are being detoxed too. The three are too interconnected to separate for me.

3) EMPOWERMENT -- this includes researching my options in the alternative world, researching what has helped others (just like you are doing) successfully heal from cancer, making decisions that were not always popular with the general thinking in Western Medicine but which were right for me, educating myself in my choices so I could share my successes coherently and intelligently with others who may choose a similar path, questioning typical protocols and keeping vigil on the fact that we are all unique and respond differently...ie, what works for me may not work for you and vice versa, listening to my inner voice and trusting that God will lead me on my path.

Great question.

peace, emily

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