Stage 2 - chemo or no chemo

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!

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Comments

  • LindaK.
    LindaK. Member Posts: 506 Member
    My husband is stage 2 also

    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

  • PhillieG
    PhillieG Member Posts: 4,866
    Good Question Kim(?)

    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

  • John23
    John23 Member Posts: 2,122
    Teachmisskim –

     

    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
    Cathleen Mary Member Posts: 827
    Stage two

     

    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
    danker Member Posts: 1,276
    chemo

    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
    LazrTekr Member Posts: 4
    Stage 4a Colon Cancer

    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!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Very Hard Decision

    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
    Teachmisskim Member Posts: 4
    Thanks for all the advice. 

    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
    PhillieG Member Posts: 4,866

    Thanks for all the advice. 

    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.

    Big Help, Right?

    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

  • PhillieG
    PhillieG Member Posts: 4,866
    One Other Question...

    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...

     

  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    5FU+

    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.

  • John23
    John23 Member Posts: 2,122
    PhillieG said:

    One Other Question...

    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...

     

    Question authority !

    Tongue Out

     

  • DSBC
    DSBC Member Posts: 2

    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!

  • Phil64
    Phil64 Member Posts: 838

    Thanks for all the advice. 

    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.

    5FU and Oxciliplatin
    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 )
  • ajouteast
    ajouteast Member Posts: 10
    Hi Kim, I'm stage II also.  I

    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
    ajouteast Member Posts: 10
    Hi Kim, I'm stage II also.  I

    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
    Teachmisskim Member Posts: 4
    Thank you everyone!  I have

    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
    Trubrit Member Posts: 5,643 Member

    Thank you everyone!  I have

    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/

     

    Hair loss

    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!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Hair

    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

  • ajouteast
    ajouteast Member Posts: 10

    Thank you everyone!  I have

    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/

     

    My hair has thinned quite a

    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...