CSN Login
Members Online: 13

Stage 2 - chemo or no chemo

Teachmisskim's picture
Teachmisskim
Posts: 4
Joined: May 2013

March 25th I found out I have colon cancer - had resection surgery April 24th.  I am only 37 years old and have never had any cancer prior.  Cancer is very prevelant in my family and my great grandmother had colon cancer.  My oncologist is recommending chemo but also stated I should get a second opinion to ease my mind that I've got all information from more than 1 person.  When I had surgery my margins were clear and they took 26 lymph nodes and all were clear.  My second opinion stated he would just watch it.  

 

I was completely on board with chemo because I want to do everything I can to make sure it doesn't come back.  Bt now I have a small portion of me wondering if i shouldnt since my 2nd opinion that thinks maybe I shouldn't.  I don't want to live with the what if's or regret that I didn't feel I did enough, especially if it returns!  Every DR pretty much states its my decision.  I wish they would just say - this is what your going to do.

 

anyone with stage 2 have chemo and if so did it come back or vice versa - have you chosen no chemo and it came back?

please help me!

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I would maybe get a 3rd opinion. It's a tough call. I was dx stage IV so my decision was possibly a bit easier. What I did do was get a really good oncologist and I've been following her advice for over 9 years. I think I chose wisely.

The thing you have to ask yourself is "am I OK with my decision" by which mean that IF it comes back and you didn't do anything to help prevent it, are you OK with it. Remeber, doing chemo doesn't guarantee that it won't come back as does not doing chemo guarantee that it will come back. 
Seeing that there is a history of it in your family I would most likely go with chemo but that's me.

I know....real helpful.

Sorry you're here but welcome aboard...
-phil

LindaK.
Posts: 320
Joined: Apr 2013

I'm so sorry you've found this site because you've been diagnosed, but the short time I have been on here, I have found some great advice, suggestions, etc.  I'm sure you will get the same results from the generous people on this board.

My husband was also diagnosed with Stage 2 in December '12, he was 59 (he's now 60).  He had 2 feet of his colon removed with a successful resection.  We spoke to his GI doctor, his primary doctor, his surgeon and oncologist - all recommended chemo - the Folfox regimen because his tumor was large and considered high risk Stage II.  They all said "You need to do this chemo" but it was ultimately his choice.  The oncologist said, "You're 59, not 89, so you should have it" and if you are 37, I'd think they are telling you the same thing.  My husband was adopted so he does not know his family history.  We did not seek a 2nd opinion, completely trust our team of doctors.  We have since found out this is the typical protocol for his type of cancer.  Did the oncologists you saw give you any stats for people your age with your stage?  Our oncologist did that and it helped my husband in the decision making process.

I have been searching for info on stage 2, but haven't found too much.  Some others here are stage 2 and can give you good advice.  As a wife and caregiver, I feel we should do everything possible to try to keep my husband healthy and try to keep cancer on the back burner.  Sounds like you feel the same way. 

Sending positive energy your way...

Linda

John23
Posts: 1832
Joined: Jan 2007

 

Chemotherapy was never designed to seek out and kill individual cancer cells. In fact, small clusters and/or very small tumors are often bypassed by the toxic chemicals. It is for that reason, that many Oncologists are suggesting a “wait and see” approach.

 

The chemicals are toxic and carry carcinogenic warnings, and they are well known for the side effects they cause. What physician desires to put a patient through the rigorous treatments for something that may or may not work? Especially knowing that the “remedy” can be worse than any possible resolve?

 

Get a third opinion, and a fourth, if you feel you still don’t have your mind settled. No decent physician gets insulted by a patient seeking other opinions!

 

The bottom line? Your husband is the one that should be making the choice, and you should be the one helping gather the information needed to make a good choice. He has to listen to his own senses; his own survival instincts, and act accordingly.

 

As previously stated, there is absolutely no guarantee that doing chemo or not doing chemo will mean further cancer spread or not. The Oncologists see the results often enough, but finding one that will be honest enough to tell you the truth, is not always that easy. Colorectal surgeons often are more objective……

 

Your “other opinions” should come from physicians that are not of the same group or organization; going out of town for another opinion is not unusual!

 

Good luck, and best wishes for better health,

 

John

 

Cathleen Mary
Posts: 575
Joined: May 2011

 

Hi Teachmisskim,

Again, sorry that life brought you here...especially, at 37....but I am glad that you found us.

I was diagnosed stage 2 in July 2009. My Dad, and 4 aunts on my maternal side,had all died of colon cancer.  Where I received treatment and who treated me were my major decisions. I chose both very carefully. After much conversation and the advice of the tumor board, I chose to forego chemo and be closely followed. So far, so good. Although my CEA has been rising slightly, and a liver biopsy revealed autoimmune hepatitis, I remain NED. This is a highly personal decision. I was 59 at diagnosis. Neither decision holds a guarantee. If you need another opinion to be comfortable with a decision, by all means go for it. 

I have no idea what is the right decision for you...I do know that I am comfortable with the decision I made. I think, even with recurrence, I would be comfortable. Close follow up is essential as is a team you trust. Pay attention to whatever your 'gut' is telling you. 

Wishing you the best....let us know how you make out.

Cathleen Mary

danker
Posts: 742
Joined: Apr 2012

I had stage 2 bordering on stage 3. After the resection, having had chemo and radiation prior,my oncologist wanted more chemo.  The surgeon said "no"

since the lymph nodes were not involved.  So no more chemo.  That was three years ago and i'm still NED.  Good Luck to you on whatever you decide.

LazrTekr's picture
LazrTekr
Posts: 4
Joined: May 2013

Hi Teach,

Sorry to hear of your diagnosis. I was diagnosed S4a Colon Cancer in November of 2012, with meta tumors on my liver. Went through the resection and was very lucky that the surgery went well and was actually back to work 2 weeks later. They removed the tumor (size of a golf ball, 6" of my colon (lucky it wasn't more) and 21 lymph nodes, which 10 were positive for cancer. 2 months after I started FOLFOX (chemo) and have done very well on it. Not all people do, but as far as chemo goes, it isn't a very harsh treatment.

I have done 9 rounds of FolFox so far and the first 4 were a cake walk. Other than the cold sensitivity, it wasn't bad. After the 4th and on, it has gotten worse. Heartburn (belching and hiccups), mouth sores, slight neuropathy, exhaustion and most annoying now, the rectal pain from constipation/diarrhea. Started Avastin (stops the production of new blood vessels) on my 7th cycle of chemo and that has affected by taste greatly. Add that to the mouth sores and lack of appetite and you have a trifecta of reasons not to eat. In short, I had no other choice really than to do chemo, considering I am S4a with tumors on my liver, but I can say that if you need to do chemo, don't be afraid. You go into it hearing and thinking the worst and really, it hasn't been that hard. Everyone is different and are affected differently by the drugs, sometimes the chemo doesn't work, but don't let chemo scare you. If it will reduce the tumors and/or prevent future ones, then it is worth it.

My liver tumors have been reduced by 2/3rds at my last scan, after 6 cycles of FolFox and doing well. I start cycle 9 next week and cannot wait for cycle 12 (finished?)!

Thanks for listening and hope all goes well with you and everyone else!

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

What chemo were they suggesting? Some are tougher on the body than others are. There is another group of chemical therapy drugs called monoclonal antibodies that is a more targeted type of chemical therapy (not to confused with chemotherapy which is chemical therapy - don't ask... Tongue Out) which is easier on the body but it isn't used the same as some harsher chemos are.

It's a tough call that only you can make. Do try to find the best oncologist that you can, even if you have to pay out-of-pocket...

 

John23
Posts: 1832
Joined: Jan 2007

Tongue Out

 

Annabelle41415's picture
Annabelle41415
Posts: 4264
Joined: Feb 2009

If you have a doctor you can trust, I'd go with what they say.  My surgeon is my best friend (well not really, but close), but he is the most important guy in my whole journey.  When he recommends a colonoscopy, flex sig, surgery, chemo, metamucile, etc, I'll do what he asks.  He was my second opinion of a surgeon and I'm so glad it was recommended to get a second opinion.  Be comfortable with the "what if's" and if you aren't go for what it is your heart.  Get a doctor you can believe in and wishing you the best.

Kim

Teachmisskim's picture
Teachmisskim
Posts: 4
Joined: May 2013

Thanks for all the advice.  My main oncologist is the one who wants me to have the chemo.  He'd like me to do 6 months of 5-FU.

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

You got the full range of answers from heII yes to heII no. In the end it boils down to making an informed decision that you're comfortable with. I did do 5FU (you've gotta love the name!) along with Leucavorin but I was stage IV, 47 at the time and chose to be aggressive with my approach to treatment.

I feel I made the best decisions (for ME) and I wouldn't change anything. Everyone responds differently and has different tolerances...  

-p

Phil64's picture
Phil64
Posts: 461
Joined: Apr 2012

I'm stage 4 crc. I had 11 treatments of 5FU and Oxciliplatin and the undetected cancer mets in my liver were growing while I was taking this chemo. The CT scans all showed a healthy liver but rising CEA levels prompted my onc to keep looking for the cancer. A liver MRI finally revealed the cancer mets in the liver. When the onc realized that chemo didn't work he switched me to FOLFIRI and Erbitux.

Key lessons: chemo doesn't always work. CT scans don't always work. Side effects from chemo are tolerable but real and very undesirable as others have posted.

Phil ( blog: http://pscamihorn.me )

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

You might want to consider alternative drug uses and supplements with your 5FU-LV, or capecitabine (xeloda) which should be a generic already.  My wife does a foreign, oral 5FU-LV with aggressive, researched supplements and some off label stuff, and she's been stage IV for over three years, and is doing great.

DSBC
Posts: 2
Joined: Apr 2013

Hello, Kim.  I was diagnosed stage 2A in spring 2009.  After successful resection surgery I determined from my pathology report that my tumor exhibited both Perineural Invasion (PNI) and Blood Vessel Invasion (BVI).  Both, especially, PNI, threw me into a borderline high risk category.  In fact, survival statistics for PNI-positive, stage 2 patients were worse than for any stage 3 cases.

My attitude toward adjuvant chemo then became, "convince me that I should not".  No one was able to convince me not to do it.  So, I completed 12 cycles of FOLFOX (5FU plus oxilaplatin) over a 6 month period.

I'm now 4 years out and no recurrence yet.  Fwiw, I cleaned up my diet and began regular vigorous exercise.  Neither of those can hurt either!

Please check out the threads active right now.  There's one with a new ASCO report on the benefit of adjuvant chemo for stage 2 patients.

http://abstracts2.asco.org/AbstView_132_110783.html

Good luck!  Please stay in touch!

ajouteast
Posts: 10
Joined: Mar 2013

Hi Kim, I'm stage II also.  I am 45.  I opted to have the chemo (FOLFOX).  Totally up to me.  My thought process was if there is even a slight possibility that it will help I'm doing it.  It didn't hurt that my oncologist said if I was his daughter he'd want me to do it.  :)  So far I've had 5 of my 12 treatments and it's going well.  They removed the oxiliplatin after round 3 because the neuropathy was getting pretty bad.  So now it's just the 5FU and the Leucovorin.  This has made treatment much more tolerable.  Everyone reacts differently, but if you are just getting the 5FU, I don't think you'll have a rough time of it.  It's pretty well tolerated. 

Feel free to message me if you'd like to discuss this more.

 

ajouteast
Posts: 10
Joined: Mar 2013

Hi Kim, I'm stage II also.  I am 45.  I opted to have the chemo (FOLFOX).  Totally up to me.  My thought process was if there is even a slight possibility that it will help I'm doing it.  It didn't hurt that my oncologist said if I was his daughter he'd want me to do it.  :)  So far I've had 5 of my 12 treatments and it's going well.  They removed the oxiliplatin after round 3 because the neuropathy was getting pretty bad.  So now it's just the 5FU and the Leucovorin.  This has made treatment much more tolerable.  Everyone reacts differently, but if you are just getting the 5FU, I don't think you'll have a rough time of it.  It's pretty well tolerated. 

Feel free to message me if you'd like to discuss this more.

 

Teachmisskim's picture
Teachmisskim
Posts: 4
Joined: May 2013

Thank you everyone!  I have decided to go through with the chemo.  For those that had 5 FU did you have much hair loss?

 

I've also started to blog, feel free to read if you'd like.  I've even included pictures :)

http://teachmisskim.blogspot.com/

 

Trubrit's picture
Trubrit
Posts: 1482
Joined: Jan 2013

I had wonderful thick hair before I started chemo, now I look like an 80 year old. 

I've finished my first round of chemo, so no more Oxalitplatin, which is the one that effect hair loss.  I just can't wait until it grows back. 

Every one reacts differently, so you may not experience any hair loss. 

Good luck! I think, at the end of all of this, you will be glad to have gone through the chemo.

Remember we are here for you.

Blessings!

ajouteast
Posts: 10
Joined: Mar 2013

My hair has thinned quite a bit.  To the point where I don't think I'll have much if any left by the end of treatment.  I have noticed that the amount coming out is less since the oxaliplatin was removed from my treatment.  You probably won't have as much thinning with only the 5FU.  Hopefully!  It's been hard to lose what I have.  I bought a very nice wig just in case...

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

at least not with FOLFOX/Avastin.  It didn't even thin.  But it seems like everyone reacts differently (although I was told that significant hair loss is very rare with this particular chemo).  Keep us posted on how you do~Ann Alexandria

Helen321's picture
Helen321
Posts: 777
Joined: May 2012

 . . .While doing chemo, no one was even aware I was sick unless I told them.  No weight loss, no hair loss (it's very rare with this type of chemo), however, I had to wear gloves to the supermarket when I did the oxilaplatin and I was religious with the antinausea pills.  The discomfort went away after I was done.  I'm back to normal.

Annabelle41415's picture
Annabelle41415
Posts: 4264
Joined: Feb 2009

My hair thinned but no one could really tell and my hair was thin to begin with.  Very few ever lose it all, but you probably will notice some hair loss.  Good luck with your treatments.

Kim

Helen321's picture
Helen321
Posts: 777
Joined: May 2012

I learned a lesson so my vote would be chemo.  One round is really not so bad although some people get stuck with permanent neuropathy.  I was lucky enough not to so easy for me to say but if I could go back in time, after my first surgery, I would have done chemo and been done with this.

darlad
Posts: 17
Joined: Nov 2010

I was 48 when diagnosed with high risk stage 2 colon cancer and I elected to join a study group. One arm of the study receives chemo and the other did not. Due to me having high risk, I was placed in the chemo group. I started chemo doing OK (FU5 and Oxaliplatin) and then in the final 3 months of chemo I had pancreatitis a couple days after chemo ended. I went inpatient, not eat for three or four days until the pain reduced. Chemo ended in May of 2011. I still have neuropathy in hands and feet. My hair has grown back in actually thicker than it had been previously. For some time after chemo ended, I couldn't place the right words together and had short term memory problems. I struggled at my work for the 1st year after chemo.  Now doing better and able to concentrate again.

Everyone deals with chemo differently but if I had to go it again… I would hesitate and ask more questions like what is the outcome percentage difference between taking chemo versus not taking chemo. Several articles that I have read indicate that there is no evidence that adjutant chemotherapy reduces reoccurrence.

Truth is that I likely would have made the same decision to take chemotherapy; I was really frightened and wanted to do everything possible to reduce the odds of reoccurrence. I just wish that I had slowed down and asked more questions. The chemo was harder on me than I originally expected.

I still really don't know why I was high risk for reoccurrence. I assume a test came back with markers that suggested this but I never asked. Looking back, I just received the information and charged forward.

It just seems stage two must not be quite as bad as I had originally thought.  Now I see the doctor every 6 months and have a CEA level.  My CEA was never high to begin with and I wonder how this test will catch a reoccurring problem.  They don’t even take Scans.  It just seems like not much is done for stage two, after chemotherapy, unless you are having symptoms.  It just makes me question was chemotherapy even necessary.   

My advice is for you is to request copies of your lab, scan and operative reports.  Sit down and really understand what is being said to you.  Ask questions and make an informed decision of what your trusted physician is saying and proceed with what you and your doctor feels is best for you. 

 

 

 

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

That's the question alright...

I've done it all different kind of ways.....but always chemo on the back end.....and still recurred....have had it 3x in an 8-year time frame.

When you first start, you want to believe that doing chemo will 'insure' you won't get it back.

But, there's no way to know whether it will come back or not.....just doing chemo for the sake of prevention is not really the answer.....time always makes the determination.

When you first start out, you want to do everything you can.....and truthfully, that is not a bad strategy....I tried it like that and still recurred.....with exercise, with diet, with chemo, with radiation, with surgery(s).

And still......

The further you get out with cancer, you have to start being more selective and not just pull the trigger every time......

The prevailing theory (that holds a great deal of merit) is that if there is NO visible evidence of cancer and you got clear margins, then it may be prudent to hold off using up all of the big stuff, in case you have to address a solid tumor mass down the road.

Chemo does not cure cancer....so just taking it for the sake of hoping that it gets everything is something to keep in mind.  The body is circulatory and is therefore a moving target...and as such, this makes it hard to hit while moving.

Throwing chemo at the body (without visible evidence) is alot like trying to put a fire out with a garden hose....

You hope where it splashed put the fire out...but cancer cells know how to hide - and how to adapt.  That's where the problem is.

It's not as easy as that, or many of us would not experience Recurrence. 

I was a Stage IIb that became a metastatic Stage IV......and despite trying all the things I mentioned. 

There really is no way to know....if you're new to it and fresh, you might consider it.....and if you were to recur ever again, your though process might change somewhat, or maybe not. 

This is the question that none of us can ever answer.

I saw a comment on this thread that said do it and be over it....like it was never going to come back again.  

While that is a possibility, there is also a strong probablilty that the cancer might still return. 

I've had to hit mine 3 different times now to reach the longest remissive state of my 9-year battle.

Sometimes once is just not enough.....and sometimes doing everything still doesn't guarantee absolute results. 

But, all you can do is try....that's all that any of us really do.

Whatever you do, just don't look back with regret (one way or the other).  You have to make decisions along the way....all is a risk and a gamble.....we roll the dice....and live with our decisions that we make or are made for us...and try and do the best that we can.

Best of luck with your decision!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network