No Chemo For Me

Options
maryloo
maryloo Member Posts: 1

Hi - I'm new to this site.  I had emergency surgery Christmas Eve 2016 - desending colon resection - 3mm tumor - Stage II  T4A N0 M0 with high grade cells.  It happened so fast that I never got my head around the fact that I had cancer and probably had it for years since colon tumors are slow growers.  I was stupid because I didn't get a colonoscopy in my 50's.  I figured that since no one else in my family had colon issues then why spend the money...  So here I am just about to turn 62 sweating it out because my CEA went from 1.02 (3 month) to 4.22 (7 month). It was normal at the time of the surgery. Go figure.  I realize that it's still below 5 but, like the rest of the wonderful people on this site, any bump is an instant OMG moment.  Since I am Stage 2 I did an enormous amount of research about CRC and Chemo.  It's pros and cons.  Stage 2 is a weird stage to be because chemo has little benefit 2 to 5% after 6 months of the stuff and all that I have read says that it's not really recommended for this stage but you can get it if you feel it will do you good.  I chose not to.  My surgeon felt that she had gotten everything - clean margins and 22 nodes.  Because everything we put in our mouths ends up going through the colon I have made some major changes in my diet.  I am determined not to give the C cells, if any are still in there, a reason to want to start up again.  Has anyone else decided against chemo and stayed NED?

 

Thank you!       

«1

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Options
    I don't want to sound like

    I don't want to sound like the voice of doom, my intention is always to give hope, however I'm not sure I'm comfortable with what you're doing. I'll tell you why. 

    One is because it's surprising how often we hear about people who are staged one or two and who have very little in the way of treatment beyond just surgery and then it goes south for them in the future. I, personally, believe that they don't hit lower stqged cancer hard enough. Maybe some will disagree with me but I find it scary and I think you should really get the stats before you make that decision.

    Two is that I didn't want to do mop up chemo because I'd read so much about the ineffectiveness and things like that. I did do it but not in the time frame it should have been done and my cancer has spread and I can't help but wonder if that's why. And if I hadn't done it I'd be kicking myself because I hadn't and would be convinced that's why it's back. There is a member on here who is very much against chemo and who, I beleive, refused it, who has now not been on for some time and we're all worried about him and suspect things are not going well as he was quite active on here before. He did a lot of research and felt that he was right not to do it and his write ups were very compelling.

    There is another member on here who has a blog that he says tells how he beat stage four but it really just outlines how he did whatever the doctors said. I realize that your doctor isn't suggesting chemo but it worries me not to do it.

    My feeling is that you give it your best fight and then you'll have no regrets if it recurrs. If it does anyway you know you did the best you could, if it doesn't you'll never know if you needed it or not. This is coming from someone who was really trying to find any excuse not to do the chemo after the surgery. I did not want to do it. No way. But now I'm glad I did.  

    Please know that the last thing I'd want anyone to do is go through chemo for no reason. It's not fun although some are easier to take than others. Someone will likely come inwith a completely different view and you have to do what's best for you.

    Good luck with your decision.

    Jan

  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    edited July 2017 #3
    Options
    Chemo for Stage 2

    the decision not to do it is concerning.  I have met people on colon club who went from stage 2 to 4.  Chemo seems like a reasonable precaution.  Remember, you can always stop it if necessary.

     

    Take care,

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Options
    Hi and welcome. Just to give

    Hi and welcome. Just to give you my experience, as a stage 3b I did the standard chemo, Folfox[now they add Avastin too it seems].  I did the full treatment and still had it pop up in my liver. Twice, The onc/surgeon when asked about it, said it didn't work, and there was little point in doing it again, with the higher risk of permanent neuropathy as the kicker. Was your tumor really 3mm or 3cm? If the worst happens and something pops up, they would certainly be pushing chemo after getting the met out, but lots of people [including my dad] are stage 2, get the surgery and that's it. My pop never had an issue, I wish I knew his CEA scores after, since that might give you some peace of mind as well, but my pop is the example you wanted, and he was 79 at the time of surgery. He lived another 9 years and passed of unrelated stuff..............................................................Dave

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    Options
    Hopeful its just an abnormality

    I'm not trying to scare you but both times my cancer returned, is was discovered through a slow rising CEA test during routine checkups.  Definately keep a close watch on that number.  In 2013 mine went from 1.13 to 4 three months later, to 5 the next month, to 18 three months later (when the reoccurance was diagnosed).  The other side of the coin is that I have a few friends locally who have been diagnosed with Stage 2 and underwent surgery with no chemo almost 10 years ago.  They continue to have annual onc visits but so far, so good with no reoccurance.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Options

    I would definitely repeat the CEA test sooner, and monthly. That much rise is risky. We add CA19-9, LDH, ESR and hsCRP to better track and assess the situation.   The possibility of a slow growing met is one thing. 1-2 isolated met sites might even be curatively resected.   One that metstasizes further is where decisive actions sooner  are important.

    Also we chose a nonstanard, less unpleasant immunochemo approach to deal with the chemo issue, more effectively for mCRC as it turned out for us.   

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Options
    No chemo or radiation here

    I was 62 when I had my surgery, which was considerably more involved than yours.

    I never got a "stage" proclaimed, but I determined that I would not do either chemo or radiation based on life issues at the time.

    It has been 7 years now, and if still have my fingers crossed.

    Marie who loves kitties

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Options
    Stage 2 is quite tricky

    I myself didn't want to undergo chemo at first but my stage is 3B so its quite advanced that not going through chemo might pose a big risk for me.  However, in your case, hmmm...if I were diagnosed stage 2 and my surgeon assured me that he did a perfect job, I might not.  But why not try chemo just for a few sessions, just to be sure? I don't really have much valuable input but I understand where you're coming from.  Its hard to decide.  Good luck.  And if you're a believer, pray for guidance that you'll be guided in whatever decision you make.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    Options
    Perspective

    Marlyoo: Please realize that most people on this forum (me included) are doing or have had chemo.  So that may create some bias in the opinions you obtain.  If I were in your shoes I would pin the oncologist down to very real numbers of how the chemo might help you and how it would affect you and your life.  Then I would read very carefully the descriptions of the chemo and its side effects on this site.  Honestly, if I were stage 2 I would avoid chemo like the plague.  But all condtions are individual and all decisions are individual.  Good luck with your decision.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    Options
    I was stage 2B which is high

    I was stage 2B which is high risk so did 3 months of xeloda. I tolerated it quite well. First scan after surgery they found lymph node metastasis.....next 2 scans I have been ned. My onc thinks the xeloda did it. My advice would be to do that as for me it was fairly easy. Good luck in your decision. 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Options

    Perspective

    Marlyoo: Please realize that most people on this forum (me included) are doing or have had chemo.  So that may create some bias in the opinions you obtain.  If I were in your shoes I would pin the oncologist down to very real numbers of how the chemo might help you and how it would affect you and your life.  Then I would read very carefully the descriptions of the chemo and its side effects on this site.  Honestly, if I were stage 2 I would avoid chemo like the plague.  But all condtions are individual and all decisions are individual.  Good luck with your decision.

    That stage II "chemo-no chemo

    That stage II "chemo-no chemo" descision best refers to the 6 weeks following surgery  based on a limited set of information and assumptions, as well as a lack of high risk features.

    Maryloo is dealing with a substantial CEA rise over a time period that is almost a significant risk in its own right.  The (lack of) monitoring program for no chemo is a risk factor in and of itself.  Even NCCI admits that 2 month blood data may already be significantly beneficial to OS, even though this benefit is still handicapped by multiple defects in the lagging "current guidelines" of NCCI and std medicine.

    The "current practices" are poor for predicting who is likely to recur and don't make good use of known low tech technologies, poor at identifying who is starting to recur, poor at remediating those who will recur (before they do), and poor at salvage options.   Been there, done that.

    Improvements to chemo are so slowly and erratically tested and dribbled out, that it is possible to advance one's treatment tech by 12 - 20 years, just by (massive) literature review.  Stage II patients should be offered low cost targeted options (e.g. PSK, aspirin, cimetidine, celcoxib, IV C, D3 etc)  with a mild 5FU treatment combination based  on a coherent marker set.

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited July 2017 #12
    Options
    What to do?

    I'd get a second opinion...

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    Options

    I was stage 2B which is high

    I was stage 2B which is high risk so did 3 months of xeloda. I tolerated it quite well. First scan after surgery they found lymph node metastasis.....next 2 scans I have been ned. My onc thinks the xeloda did it. My advice would be to do that as for me it was fairly easy. Good luck in your decision. 

    Xeloda

    Sandy:  That is encouraging.  What dose of Xeloda were you taking?

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited July 2017 #14
    Options

    Xeloda

    Sandy:  That is encouraging.  What dose of Xeloda were you taking?

    3000 a day.....for two weeks

    I was taking 3000 a day.....two weeks on and one week off for 3 treatments. When they found metastasis they advised me  to have irinnotican also. That one chemo put me in the cancer clinic for three weeks last August. The xeloda (capecetabine) just made me tired. No chemo since. Onc says if needed will try xeloda and avastin next time.

    i did not have clear margins.

  • Cinnamon Jones
    Cinnamon Jones Member Posts: 21 Member
    edited July 2017 #15
    Options
    Chemo for stage 2

    Good Morning Maryloo,  I was in the same boat as you and I also chose not to do chemo.  I hope I don't regret it but I will have know way of knowing.  I think the thing for me was that even with the chemo it could return and the percentages for 5 year survival were very high without it.  I too researched it quite abit and found consistently that it only increases your change of 5 year survival by 2 to 5 % but likely closer to 2%.  The survival rate without it ws about 87%.  I am still working full time and single so  I need to have an income.  I work as a nurse so even mild side effects could affect my ability to work.  I too am trying to improve my diet and will wait and watch.  I was a little concerned when my oncologist said we would monitor with an annual CT scan so I got a second opinion at the Mayo Clinic.  I did not address whether I should have taken the chemo since that decision had already been made.  But they did give me their monitoring protocol for stage 2 and 3 and it is a CEA every 3 months, CT every 6 months and an annual colonoscopy for a while.   I was comfortable with that and plan to follow it.   Keep me post onhow it is going.  I have had my first 6 mo CT and CEA and so far all is well.  

  • LindaK.
    LindaK. Member Posts: 506 Member
    Options
    You never know

    You should do what you feel is best.  My husband was diagnosed in December 2012 with Stage 2 colon cancer, he was 59. He had had 4 colonoscopies in his 50s where no cancerous or pre-cancerous polyps were found.  He did have several polpys each time, that's why he was on the 2 year cycle.  After his hemi-colectomy, he did 12 rounds of Folfox based on his oncologist's recommendation and prompting by me and our daughter who is a nurse.  Within 3 months his cancer returned in his small intestines and 2 lymph nodes.  I think the chemo kept his cancer on hold and as soon as he stopped, the cancer started to grow again.  Also, both times he had a tumor growing, his CEA went down, so CEA was not an indicator for him.  He was brushed off and not treated well by his surgeon, oncologist, PCP, even the GI doctor.  He ended up in the ER in January of 2014 with the blockage in his small intestines and was actually admitted and treated for "constipation" for 7 days.  Don't get me started on that terrible hospital he was in.  We switched cancer centers where he started Folfiri in March of 2014.  He did not tolerate it very well and developed several other health issues.  Chemo stopped in September and he passed away in November. 

    I'm not trying to scare you, but every person is different and has different outcomes from surgery, chemo, radiation.  I would recommend going to the best cancer center you have access to for a 2nd opinion if you haven't already.  After reading through his medical records, both our daughter and I felt he had an aggressive, fast growing cancer that he would probably never have been able to be rid of.  Along with poor inept care for a year and a half, things may have turned out differently for him, but only God knows that.  Do what you feel is best

    Linda

  • danker
    danker Member Posts: 1,276 Member
    Options
    Chemo

    I was stage2 boardering on stage 3. Chemo and radiation to shrink tumor prior to resection. After resection pjumbing reconnected.  Oncologist wanted more chemo, surgeon said not necessary.With no additional action. been NED for 7 years now! Currently 85years old!!

  • kristasplace
    kristasplace Member Posts: 957 Member
    Options
    No chemo

    Hello Maryloo!

    I just wanted to jump in and thoroughly support your decision, whichever way you decide. However, I'm a HUGE opponent of chemo. Yes, it has helped some people, and for others it's worked for a time, then stopped working; placing them on the chemo-to-chemo rollercoaster until a chemo related illness or the cancer takes them.  

    I did chemo-rads in the beginning and I'll never regret that, even though I suffer from permanent disability as a result. If I knew what I know now, I never would've done chemo. My cancer spread just after I finished the adjuvant chemo, and I swore I'd never do it again. I did extensive research and I learned there were much better and easier ways to go about it.

    Over the past ten years I've had four-five recurrences that I treated with surgery and/or diet alone. The last metastasis (2015), I treated with diet only, since I wasn't a candidate for surgery.  Five weeks of a raw, organic, plant-based diet, and it went away on its own.

    A strictly clean diet CAN kill cancer, and it does a much better job of it than chemo for many, many reasons.

    I'm vegan now and continue to be NED. August 2nd is my 10 year cancerversary and I have absolutely no fear of cancer anymore. If it dares to come back, I know how to step up the game and get rid of it. Don't be afraid to go in another direction from the norm. Just do your research. There's tons of good-quality information out there about it.

     

    Good luck!

    Krista

  • bobby66
    bobby66 Member Posts: 69
    edited July 2017 #19
    Options

    No chemo

    Hello Maryloo!

    I just wanted to jump in and thoroughly support your decision, whichever way you decide. However, I'm a HUGE opponent of chemo. Yes, it has helped some people, and for others it's worked for a time, then stopped working; placing them on the chemo-to-chemo rollercoaster until a chemo related illness or the cancer takes them.  

    I did chemo-rads in the beginning and I'll never regret that, even though I suffer from permanent disability as a result. If I knew what I know now, I never would've done chemo. My cancer spread just after I finished the adjuvant chemo, and I swore I'd never do it again. I did extensive research and I learned there were much better and easier ways to go about it.

    Over the past ten years I've had four-five recurrences that I treated with surgery and/or diet alone. The last metastasis (2015), I treated with diet only, since I wasn't a candidate for surgery.  Five weeks of a raw, organic, plant-based diet, and it went away on its own.

    A strictly clean diet CAN kill cancer, and it does a much better job of it than chemo for many, many reasons.

    I'm vegan now and continue to be NED. August 2nd is my 10 year cancerversary and I have absolutely no fear of cancer anymore. If it dares to come back, I know how to step up the game and get rid of it. Don't be afraid to go in another direction from the norm. Just do your research. There's tons of good-quality information out there about it.

     

    Good luck!

    Krista

    Im sorry to ask, but do you

    Im sorry to ask, but do you mind explaining what did you do or still do to kill cancer? you stated that you treated the last metastasis with diet only. Please explain. Thank you 

  • kristasplace
    kristasplace Member Posts: 957 Member
    Options
    bobby66 said:

    Im sorry to ask, but do you

    Im sorry to ask, but do you mind explaining what did you do or still do to kill cancer? you stated that you treated the last metastasis with diet only. Please explain. Thank you 

    Oh, yes, sorry!

    I thought I mentioned it! I did 98% raw food. The only things I had that weren't 100% raw were sprouted bread and vegenaise. I'm uncertain if other diets would work as well; though a (healthy) vegan diet is good for prevention. I say healthy vegan diet because there are nearly as many ways to be a junk-food vegan as there are to be a junk-food omnivore/carnivore.

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Options

    Oh, yes, sorry!

    I thought I mentioned it! I did 98% raw food. The only things I had that weren't 100% raw were sprouted bread and vegenaise. I'm uncertain if other diets would work as well; though a (healthy) vegan diet is good for prevention. I say healthy vegan diet because there are nearly as many ways to be a junk-food vegan as there are to be a junk-food omnivore/carnivore.

    I hope you don't mind me

    I hope you don't mind me asking but what stage were you when you got diagnosed? Like someone on the forum said, if I had it my way I'll avoid chemo like the plague.  But mine was advanced stage (Stage 3B) that not undergoing chemo is a big risk for me.  My treatment was delayed for a month because I made the decision not to have chemo at first but then eventually I gave in.