Chemo or Not for Stage IV rectal cancer

RMGill · April 2004

I was recently diagnosed with colorectal cancer, and the CAT scan showed mets on the liver and lungs. My surgeon was blunt, but still encouraging. My oncologist was very discouraging, saying all he could do is give me a few more months to live. Given the potential side effects of chemo, I'm debating whether or not to go through with it. At 34, I feel like I'm too young to give up my hiking and water skiing and snow boarding and lie down in a hospital bed to wither away. I know the prospects are slim, but if there's even a slightest chance of a few more years of active living, I want to fight on and continue to pray that a cure may be found. How have others managed to keep on working and playing and generally living despite this rather bleek diagnosis? Being way too much of an engineer, I've read the articles that rate 5 year survival at 5~10%. I'm still in such shock over the diagnosis that valium is the only thing keeping me in one piece. Haven't made it back to work either, wonderring if I should even try.

rwkeach · April 2004

Hie thee to another oncologist as fast as possible! You don't have room in your life for anybody with such negative attitudes. I'm Stage III and have decided to go ahead with Chemo because somebody has to make it to the 5% survival rate, I have too much to live for and so do you. With the sports you mentioned I assume that you are in excellent physical condition and as such Chemo should not affect you severely. Everybody is different of course but I (at age 51) have only two days of low energy and some sickness immediately following my treatments.
There are a lot of people on this website that are stage IV and have wonderful stories of survival to tell. Please read some of the other messages.
Praying for you, Regine

VonnieKai · April 2004

What your oncologist told you sounds a lot like what my husband's oncologist told him in October 2003. The difference between you and my husband is that you're young and my husband is 73 and feeble from arthritis, diabetes and a stroke two years ago. Like you, we were devastated and thought it would be all downhill from this point. The way the oncologist talked, I thought it would be a matter of weeks. The oncologist said that the chemo couldn't cure my husband, to consider quality of life issues, chemo would only buy a little more time, etc. etc. Well, that was six months ago and my husband is still doing okay - no terrible side effects from the chemo - no bad symptoms from the lung mets - a lot of other health issues, but none that have to do with cancer. We don't know if the chemo was able to shrink the mets - we'll have a CT-Scan in a few weeks. I've heard from a number of people who have had chemo at stage IV and their mets are either much smaller or completely gone! Sometimes the mets will shrink so much that they can be surgically removed - you need to find an aggressive oncologist and surgeon to do it because the run of the mill ones are very discouraging about surgery. If you can have surgery on the mets, survival rates increase dramatically. My husband is not active, mostly due to the severe arthritis in his back (not mets! - we had an MRI) and the stroke has impaired him so that he doesn't have much motivation - he could do a lot more that he is doing now, but the point is that he isn't anywhere close to being dead. I ordered a flipping casket for him in November because of what the oncologist said. I've communicated with Stage IV survivors who have made it more that 5 years and are still doing well. Please have the chemo and continue with as many activities as you feel able to do. I also agree you need to find a better oncologist!

Kanort · April 2004

Hi,
I'm sorry for your diagnosis, but the fact that you said you want to fight is your key to getting well. I am stage 3 and have been on an aggressive chemo regimen. It is not bad. Today they have great anti-nausea meds that work wonders. As far as work goes, if you can, I would focus on healing and not be in a stressful environment, if at all possible. Of course, if your work gives you pleasure and enjoyment, then when you are able, go for it! Being young and active will help you survive. Don't look at survival rates, just know if one person out of 100 can survive, why not you being the one! A positive attitude can help heal your body. I agree with the others, change oncologists. Find one that will fight this with you. I will keep you in my prayers.

Sending you positive energy!

Kay

terrical · April 2004

My mother was also diagnosed with stage IV with mets to the liver last July. The surgeon and the oncologist gave her nine months to a year to live. She refused chemo because she wanted some quality of life during her last few months. The onc then offered her Xeloda(chemo in pill form) that she could take orally at home, and she agreed to do that. We also convinced her onc to prescribe Celebrex (an arthritis drug) that I had been reading about that is supposed to help prevent polyps. Well, mom just had a cat scan last week and was given the results Friday. NO CANCER WAS FOUND AT ALL!!! Even the tumor they were unable to remove during surgery was gone! The doctor is amazed. By the way, my mother turned 70 this weekend and hasn't missed a day of work since she recouped from her surgery.

So, my advice to you is this. Do the chemo. Don't give up. Fight. You'll read so many survivor stories on this site. There is hope. New drugs are being developed as we speak. Avistan is a newer "starve the tumors of their blood supplies" drug that was recently approved by the FDA. Do as much research as you can and get all the information that you can. Emily will be writing you about her anticancer diet and recommending several books for you to read. You've found a wonderful site where you'll receive encouragement and sound advice from people who know what you are experiencing.
Good luck slaying the beast (It can be done!).

Terri

P.S. A little prayer now and then couldn't hurt - I'll be saying one for you tonight.

KrisS · April 2004

I was diagnosed 9/02 with Stage 4 rectal carcinoma when I was 46. Actually in hindsight it was probably stage 4 from the outset of diagnosis 5/02. I am still here, thanks to surgery and chemotherapy. Although chemotherapy affects different people differently, there are a number of drugs available to control side effects. After a few trials to find out what worked best for me I have found chemotherapy quite tolerable. Although I get a bit tired, I hit the gym, lift weights, and go hiking with some frequency. I worked while receiving chemo with only a mild cutback in my hours until last June. A setback - progression after a surgery (my oncologist did not think chemo would work any more) led me to move closer to family and stop working for a while. Chemo did work and now I am back working part time. The biggest hassle is trying to adjust tentative work schedules with last minute doctor appointments. Working only part time does allow me to take better care of myself.

I would hunt for an honest, but more tenacious oncologist. Consultation at a major cancer center often is helpful, since they often have more access and knowledge of cutting edge or possible promising new treatments. Even if you live at a distance from such a facility, they often work with local oncologists so that you do not necessarily travel there for all care.

While it is true that the statistics are not great, someone has to be in that 5-10% and for those people it is a 100% sucess. You are young and otherwise healthy and ready to fight on. That is a big help and I think that puts you in fighting chance to be one of those long term survivors. As others have mentioned, sometimes chemotherapy can shrink down lesions to the point that they can be surgically removed, or treated locally to improve control.

Certainly the diagnosis is devastating news. I was shocked and scared for many weeks, but with time, as I read more and heard more, and got used to living with the uncertainties I got over it and am enjoying life. There are a great bunch of people here to help give support, suggestions on how to get over bumps in the road of treatment.

Letus know how you are doing.

Best wishes,

Kris

monline · April 2004

Also, the five year statistics you are reading are at least five years old and probably older than that. Those statistics are before the newer chemo Oxaliplatin, Erbitux and Avastin and before RFA was widely used. I would bet that the statistics five years from now will be much higher than what you find on the internet now. Also, consider at least trying the chemo because you can always stop if the side effects are too great and some people have very few side effects.

StacyGleaso · April 2004

Hello RM...

I was 33 when I was diagnosed. I was stage 4, with liver mets. Today, I am fine. I did have chemo, radiation, and surgery, followed by more chemo after surgery. You're only 34! Why wouldn't you do everything in your power to fight this? From what you've written, you're pretty active, and this is a speed bump, but doesn't have to be a total detour! Two words of inspiration for you...LANCE ARMSTRONG.

I worked every day through my chemo...no side effects to speak of. So quit paying attention to your "odds" and get this thing taken care of. If you don't give it your best shot, then what is the point?

Let me know how you're doing...

Stacy

kangatoo · April 2004

KrisS said:
I was diagnosed 9/02 with Stage 4 rectal carcinoma when I was 46. Actually in hindsight it was probably stage 4 from the outset of diagnosis 5/02. I am still here, thanks to surgery and chemotherapy. Although chemotherapy affects different people differently, there are a number of drugs available to control side effects. After a few trials to find out what worked best for me I have found chemotherapy quite tolerable. Although I get a bit tired, I hit the gym, lift weights, and go hiking with some frequency. I worked while receiving chemo with only a mild cutback in my hours until last June. A setback - progression after a surgery (my oncologist did not think chemo would work any more) led me to move closer to family and stop working for a while. Chemo did work and now I am back working part time. The biggest hassle is trying to adjust tentative work schedules with last minute doctor appointments. Working only part time does allow me to take better care of myself.

I would hunt for an honest, but more tenacious oncologist. Consultation at a major cancer center often is helpful, since they often have more access and knowledge of cutting edge or possible promising new treatments. Even if you live at a distance from such a facility, they often work with local oncologists so that you do not necessarily travel there for all care.

While it is true that the statistics are not great, someone has to be in that 5-10% and for those people it is a 100% sucess. You are young and otherwise healthy and ready to fight on. That is a big help and I think that puts you in fighting chance to be one of those long term survivors. As others have mentioned, sometimes chemotherapy can shrink down lesions to the point that they can be surgically removed, or treated locally to improve control.

Certainly the diagnosis is devastating news. I was shocked and scared for many weeks, but with time, as I read more and heard more, and got used to living with the uncertainties I got over it and am enjoying life. There are a great bunch of people here to help give support, suggestions on how to get over bumps in the road of treatment.

Letus know how you are doing.

Best wishes,

Kris

Go for it!!!!There are lotsa people here that are fighting this crazy disease.Take the chemo on offer--as the guys have said---yu may just get thru it with minimal side-effects.At such a young age and physically fit yu have a great chance for improvement!
our luv and rainbows to you!!-kanga n jen

kerry · April 2004

You sound like a fighter - so fight! I was diagnosed with Stage 3, 16 months ago. I had surgery followed by 6 months of chemo. Everyone reacts to the chemo differently, some have few side effects and can continue with a "fairly" normal life during the procedure.

Go for it and come to this site for encouragement. We are all here to push you forward.

Take care.

Kerry

andreae · April 2004

Hi,

Can only share my experience, but I suggest you go for it. I was diagnosed in January 2003. I was 20 years old at the time and it was a huge shock. Went through radiation, chemo, surgery only to have it spread to my lungs. I'm right now on a chemo regime (oxaliplatin and Xeloda). BUT... I work out 4 times a week for at least an hour (swimming or running), I'm about to finish up four courses (looking to finish my B.Sc. at McGill by next December), I go clubbing, out to dinner, movies, I volunteer at my hospital, etc. I adore my life! It's very full and gives me reason to keep fighting. You are young with a lot to look forward to... I suggest you give chemo a whirl. It's very scary to be so young and so sick, I have my bad days too. But it is possible (eventually!) to get so caught up in life that cancer moves to the back burner. It has taken me a long time, but "one day at a time" is my mantra and I just keep trying to move forward. Anger/sadness/fear are all very normal though.

Keep us posted and you'll be in my thoughts and prayers.

Andrea

jenn02 · April 2004

I agree with everyone who has already sent you their responses you should definitly fight. I was diagnosed with colon cancer in August 2002 at the age of 28. They found a large mass in my colon with over 200 polyps. My first oncologist I saw gave me 6-18 months. I had no surgery since they would have had to remove the entire colon and I was so young. I have been on chemo since. I also had mets to the liver and lungs. I have had a 90% reduction in liver mets(last scan was July 2003) the mass in my colon is gone and my last colonoscopy showed 2 polyps which were removed. So I guess my point is that you can beat the odds. Don't give up without a fight.

grandma047 · April 2004

Hi, I would give chemo a try. You are young and in good health. Don't give up the fight!!! I had surgery in July, 2003. Stage I, no spread, no lymph node involvement, good margins. I should have been fine, but it came back in January. I just finished 6 weeks of continous 5FU by port. I never got nauseous once and everything makes me sick. I also had 6 weeeks of radiaton at the same time. Only had diarehea and was tired the last two weeks. But...nothing unbearable. I will have surgery in 4-5 weeks and hoping for a cure. You can beat this, just as others here are doing. Everyone is such an encouragement here and we'll be here for you, just like we are for each other. Let us know what you decide.
I will be praying for you.
Love and prayers, Judy H(grandma047)

RMGill · April 2004

I thank every one for their words of encouragment and support and I've made my decision... tomorrow I'll start my first chemo treatment, and not just to live a few more months, but to be one of those that beats this. I have a friend who will be going with me for support. My friend is also referring me to another oncologist for a second opinion. I will include you all in my prayers as well, regardless of religion or demonition, I believe the more positive energy the better (second apointment, see the hospital chaplain).

jsabol · April 2004

Hi there, after all those encouraging stories and words, I'm so glad to hear that you are going through with the chemo. As others have said, each person's response is different, but if you do experience side effects, there are remedies and antidotes for most. It is so important that you have an onc and onc nurses that are really tuned into you. I'm halfway through six months of chemo, doing pretty well, but decide to finally take a leave of absence from work...it was too fatiguing, and I have other priorities now.
Glad to hear your spirits are up; everyone is freaked out by this diagnosis at some point, but with support and prayers, we all manage to get through each day.
By the way, I'm not sure who prescribed the Valium, but there are some newer anti-anxiety meds that are less habituating and that you don't build up a tolerance to....Ativan is one, so you may want to inquire. (Sorry, it's the nurse in me speaking!) For me, the panic started to subside after starting chemo. Best of luck to you, keep us posted. Judy

Chemo or Not for Stage IV rectal cancer

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