Opted out of doing the Treatment

Kimber8920

My Dr said that Chemo could not get rid of the Cancer 100% at stage three that I was too advanced...T3N2 .. That the reattachment could be compromised by the chemo and it would postpone the surgery for 6 months. So after a lot of thought and consideration of all the facts... I am not going through with any treatment. The nausea and the extreme fatigue are the most annoying but I have dealt with that for years before the emergency surgery for the tumor removal and then the diagnosis Nov 2014... so I guess its not the treatment that makes you sick and tired UGH

Trubrit

Welcome to the forum, Kimber

I am sorry that you have been diagnosed with this awful disease. 

I was reading your post in another thread, and must admit that it sounds a little strange that you are told they cannot 'cure' you with chemo, especially at Stage III. Also, having a CT & PET Scan every three months seems a little over the top.  We don't usually use the word cure, but there are others here, that have lived many years with not only a Stage III diagnosis, but Stage IV also. So no, I guess chemo isn't a 100% 'cure' for everybody but I personally believe that its worth giving it a shot. Note I say personally, as we all have to make that decision for ourselves. 

Have you thuoght of getting a second opinoin? 

I was diagnosed Stage III B, resected bowel, followed by chemo & radiation. After some great monts NED (no evidence of disease) they found a liver tumour. I had an Ablation to zap the little sucker, and since then, ten months, have had clear scans and great blood work. 

I'm also not quite understanding what you mean by 'reattachment'. 

I found that having a notebook by my side at ALL times, was a life-saver for me. Any questions I had, big or small, went down in the notebook, and I made sure my Oncologist was there to answer them to my satisfaction at every appointment. 

The nausea and fatigue are definitely part of the side-effects for most people undergoing chemo for CRC (Colorectal Cancer). I am sorry that you have been experiencing that for years. Possibly your body warning you that there was something going wrong. 

I am also sorry that your fiance did a runner. Maybe a blessing in disguise, if he wasn't willing to stand by you when you needed him the most. 

We are a great bunch of folks here on the fourm. And we look forward to helping you in any way that we can. 

Sue - Trubrit

 

ron50

Hi Kimber

I was dxed stage 3c into 6 nodes. I was told at the time 'too aggressive, too many lymph nodes. I'm sorry but I believe it will get you'that was the opinnion of my surgeon and oncologist. I had 48 sessions of weekly chemotherapy. My surgeon watched over me for six years. Constantly he warned that I was not out of the woods yet. Then at the end of six years he declared that I was cured of that cancer but to stay vigilant for new ones. I have had ten colonoscopies half of which have produced polyps but no new cancers. Jan22nd this year was the end of year 16 of survival and the start of year seventeen. Please get a second opinnion. Ron.

tanstaafl

intergrative medicine

There are milder treatments that can substantially  reduce your chances of recurrence, depending on your biology.    I would urge you to review forums about metronomic oral chemo like xeloda and maybe UFT, celebrex, cimetidine and PSK.  Perhaps along with a number of inexpensive natural molecular medicines and supplements in the Life Extension Foundation's articles on colon cancer.   Getting and knowing your tissue CA19-9 are useful to varying degrees treatment wise.

My stage IV wife has been doing mild chemo with immuno- and molecular medicine  for almost 5 years with a high quality of life, where I can assure you she can't live without at least some oral chemo, as well as the alternative stuff.  Diet, supplements and IV vitamin C have given her energy and quality of life as well as getting rid of her old complaints, that were in part severe vitamin deficiency. 

Kimber8920

Trubrit said:

Welcome to the forum, Kimber

I am sorry that you have been diagnosed with this awful disease. 

I was reading your post in another thread, and must admit that it sounds a little strange that you are told they cannot 'cure' you with chemo, especially at Stage III. Also, having a CT & PET Scan every three months seems a little over the top.  We don't usually use the word cure, but there are others here, that have lived many years with not only a Stage III diagnosis, but Stage IV also. So no, I guess chemo isn't a 100% 'cure' for everybody but I personally believe that its worth giving it a shot. Note I say personally, as we all have to make that decision for ourselves. 

Have you thuoght of getting a second opinoin? 

I was diagnosed Stage III B, resected bowel, followed by chemo & radiation. After some great monts NED (no evidence of disease) they found a liver tumour. I had an Ablation to zap the little sucker, and since then, ten months, have had clear scans and great blood work. 

I'm also not quite understanding what you mean by 'reattachment'. 

I found that having a notebook by my side at ALL times, was a life-saver for me. Any questions I had, big or small, went down in the notebook, and I made sure my Oncologist was there to answer them to my satisfaction at every appointment. 

The nausea and fatigue are definitely part of the side-effects for most people undergoing chemo for CRC (Colorectal Cancer). I am sorry that you have been experiencing that for years. Possibly your body warning you that there was something going wrong. 

I am also sorry that your fiance did a runner. Maybe a blessing in disguise, if he wasn't willing to stand by you when you needed him the most. 

We are a great bunch of folks here on the fourm. And we look forward to helping you in any way that we can. 

Sue - Trubrit

 

Hi Sue,
 
I have had a second

Hi Sue,

 

I have had a second opinion... the surgeon that did my surgery in nov will not be the one doing the second surgery. The second oncologist I saw jan 2015 laid it on the line and told me that he did recommend the chemo to bring up my survival percentage numbers but that it would not rid me of it 100% I am relying on God for that My young age was a big factor in this. I guess I am lucky that I found out what a wimp my ex was. If he can't stand by me thru this after all I had done for him and his daughter I dont need either one of them in my life. I am just going to have to monitor this for a while I guess. I just hate the nausea and the fatigue ugh

Kimber8920

ron50 said:

Hi Kimber

I was dxed stage 3c into 6 nodes. I was told at the time 'too aggressive, too many lymph nodes. I'm sorry but I believe it will get you'that was the opinnion of my surgeon and oncologist. I had 48 sessions of weekly chemotherapy. My surgeon watched over me for six years. Constantly he warned that I was not out of the woods yet. Then at the end of six years he declared that I was cured of that cancer but to stay vigilant for new ones. I have had ten colonoscopies half of which have produced polyps but no new cancers. Jan22nd this year was the end of year 16 of survival and the start of year seventeen. Please get a second opinnion. Ron.

Hi Ron...congratulations on

Hi Ron...congratulations on the remission of 16 yrs I was told 18 out of 25 nodes. I believe in the power of prayer. And I know God did not save my life to have me suffer. I have a young son that needs me... I am sure God did not just want me to have only 8 yrs to raise him

Kimber8920

tanstaafl said:

intergrative medicine

There are milder treatments that can substantially  reduce your chances of recurrence, depending on your biology.    I would urge you to review forums about metronomic oral chemo like xeloda and maybe UFT, celebrex, cimetidine and PSK.  Perhaps along with a number of inexpensive natural molecular medicines and supplements in the Life Extension Foundation's articles on colon cancer.   Getting and knowing your tissue CA19-9 are useful to varying degrees treatment wise.

My stage IV wife has been doing mild chemo with immuno- and molecular medicine  for almost 5 years with a high quality of life, where I can assure you she can't live without at least some oral chemo, as well as the alternative stuff.  Diet, supplements and IV vitamin C have given her energy and quality of life as well as getting rid of her old complaints, that were in part severe vitamin deficiency. 

Thank you Tanstaafl... when I

Thank you Tanstaafl... when I was diagnosed with the stage 3 and told 18 out of 25 nodes I was so scared but more so for my children. When I got the news that it was not genetic and my children would be okay and that they would need to be screened at 33 it eased my mind some. So when the Doc told me the chemo would not rid me of this I decided my second surgery was more important to me and to get some of my normalcy back. I have no desire to take any other meds or try any other treatments. I believe God is with me

tanstaafl

Kimber8920 said:

Thank you Tanstaafl... when I

Thank you Tanstaafl... when I was diagnosed with the stage 3 and told 18 out of 25 nodes I was so scared but more so for my children. When I got the news that it was not genetic and my children would be okay and that they would need to be screened at 33 it eased my mind some. So when the Doc told me the chemo would not rid me of this I decided my second surgery was more important to me and to get some of my normalcy back. I have no desire to take any other meds or try any other treatments. I believe God is with me

maximization

I think he meant conventional "maximum tolerable dose" chemo alone.   He won't know much about Life Extension type stuff, immunochemo, and multimodal conventional treatments.  Now is the best time to fight aggressively.

Much of the mild and supernutritional/natural stuff could enhance your second surgery. Some can be taken close to surgery and some can be taken through surgery with adequate preparation and cooperative surgeons.   The road to cure is often multimodal, like simple immune enhancements, surgery, inexpensive immune and chemotherapy, more surgery, more mild chemistry.

Steve444

Chemo

You need to make choices that are best for you.  we all are given different outlooks, make different choices and have different outcomes.  

I was diagnosed with stage 4 cancer a year ago as of this past Friday.  I was told that due to the number of tumors that surgury wasn't an option, but maybe if chemo shrunk them down enough that it may be.  I travelled to a bigger cancer center for a second opinion as was told that my outlook was 3-5 years and that chemo would at best extend me a year which was already factored into the 3-5.  He continued that based on my progression I had already been well into that time left.

Your diagnosis was obviously much different than mine.  I went with the chemo and am now without detectbile tumors on chemo alone.  While my oncologist says it will come back, who really knows...  For me chemo was good while I could tolerate it.  I did quit due to the side effects A few months ago.  while the tumors have shrunk away I was still told that surgery isn't an option since both lobes of my liver were impacted and they'd only do surgery if they felt enough healthy organ would be able to recover.

Where we are similar is in the extreme fatigue and nausea before treatment.  Chemo actually made me feel better which may be odd to hear.  Before I started chemo I was exhausted and in bed all day.  I was nauseous, lost my appetite and lost all of my muscle and fat.  I was going downhill fast.  Once I was on chemo for a couple months things started to turn around.  I did of course get chemo brain, started stuttering, lost my balance, tipped quite often, became numb in my hands and feet, had a raw and bloody nose, etc...  But I felt better overall.  If it comes back I'm not sure if I'll do treatment again or not.  My wife will probably talk me into it.

if told that surgery was my best option and that chemo would interfere, I would probably go with your choice.

jen2012

I hope that you will at least

I hope that you will at least go for another opinion.  I'm sure you want to be here for a long time and while God is good, I'm not sure that it's a wise choice to hope he cures you.  

I assume by re attachment that you mean having an ostomy reversal.  My husband has had his ostomy for almost two years and he would rather not have it.  But he decided he would rather be here with the ostomy than not.  To wait six months for reversal should not be your deciding factor.  Six months is nothing.  I just would hate to see you back here in 6 months saying you are now stage 4...that's a lot harder to deal with and cure.

please seek other opinions and do lots of reading before you make your decision.

good luck to you.

impactzone

hello, 8 years here at stage

hello, 8 years here at stage four from the initial dx. I was dx at 46 with two young kids and have had 6 surgeries and 10 months of chemo but I am doing well. I know the stuff sometimes really sucks but I  always took whatever I could as I was only getting older. I used to play mind games and told myself, if I feel bad, then the drugs are working... Stay positive and aggressive while you are strong and young. Best of luck.

Chip

annalexandria

Hi Kimber and welcome to the forum!

I'm really sorry you have to go through this.  It's so hard, esp with small children.  My son was only 5 when I got diagnosed (stage 4 in 2009).  I have now been NED for a hair over three years, after going through chemo and multiple surgeries.

It sounds like you have a lot going on, and I can understand the fear that you might not be able to care for your child very well while on chemo (am I reading it right that you could use more support in this situation?).

It is true that chemo is never a 100% cure.  What it does do, however, is increase the chance that you will survive this, have it go away, and never have to deal with it again.

I'm a librarian, so I like to gather as much info as I can.  When I look into survival rates for stage 3 colon cancer, I see that without chemo you have a five year survival rate of 40-50%.  Because of the number of nodes you have involved, you are probably in the lower part of that range.  

With chemo, however, the 5 year survival rate goes up to about 65%, which is a pretty huge increase in the odds, in your favor.

And of course many of those patients were older folks, with other problems.  So since you are young, and probably pretty healthy in other ways, your odds may be even better.  Most patients, esp younger ones, tolerate chemo reasonably well.  I've known plenty of people who continued to work while on it.

Everyone has to make up their own minds about these things, but as a parent I felt I had to do absolutely everything possible to make sure I was here to watch my kids grow up.  Unfortunately God takes away the parents of small children all the time.  My sister died of cancer at the age of 44, leaving behind a son who loved her very much.

I hope you'll forgive me for speaking so bluntly.  I wish you the very best, whatever path you choose.

Hugs~AA

Easyflip

Hey Kimber,

I respect your right to make your own decision but I wanted you to know that I was Stage 3 also who went to a stage 4. I had chemo and liver resection and 2 of my oncologists have said I may be cured. Not NED but cured! So I think it is possible to at least live a long time with this if not be cured altogether. It sounds like you don't want to do chemo because of the ostomy bag, is that right? Maybe reversal can wait til after chemo or maybe it becomes permanent. I don't think that's too bad a trade off for your life. Many say it's an inconvenience but it's not too bad once you get used to it. Best wishes with whatever you decide. Good luck and keep us posted.

Easyflip/Richard

zx10guy

Not much more to add to all

Not much more to add to all of what has been said.  I too struggled with the spectre of chemo being a stage 3b'er.  Almost bought into some of the Internet sites stating they were able to "cure" themselves from other methods while not having chemo.  In the end, I decided to do it and not roll the dice that surgery alone took care of everything.  I also got prodded by my brother who is a PA to not be foolish by refusing chemo.  I will be up front and say chemo wasn't a walk in the park for me.  There were times I didn't want to go for my infusions.  This happened around round 8 or 9.  I was fine for the first 4 or so treatments thinking it wasn't that bad.  My oncologist adjusted my dosages based on my blood counts and my physical symptoms (ie neuropathy).  He also added in additional anti-nausea meds as the side effects started to pile on.  So don't think it's going to an all or nothing situation.  The doctors can and will adjust dosages based on how you're doing and will also withhold treatment if your body hasn't recovered enough from the last one.  Oxali was held back on my 11th treatment due to neuropathy symptoms and added back in on my 12th and final.

But one observation I've made over the years I've been dealing with this disease...and it's just an personal observation....  There's this whole discussion about being young being an advantage in fighting CRC.  Well, being young does help, but I've noticed a disturbing trend many don't seem to acknowledge.  I've noticed the younger the person is with CRC, the more aggressive the disease.  I think this should also factor into your decision.

geotina

Kimber:

Nothing in life is 100% except birth, taxes and death.  Asking the doctor for a 100% cure is like asking the dentist when he fills a cavity if this will prevent future cavities 100%,  he simply cannot give that guarantee, every patient is different.   There simply are no guarantees in life. 

It appears you have young children.  I want to see you around to see them go on a first date, argue with you through the teenage years, graduate from high school, but I fear you will not experience these milestones of life if you do nothing other than the initial surgery. You are in the fight of your life with cancer, fight back. 

Whatever you ultimately decide to do it is your decision, no one can make it for you, just weigh everything and do what is best for you. 

Best Wishes - Tina

Helen321

I'm confused as to why the

I'm confused as to why the doctor didn't offer chemo afterwards.   Stage III has an excellent survival and even cure rate although cancer doctors don't use the word cure, it presents the opportunity for law suits.  I'm two years NED at stage III, two surgeries, chemo, rad.  I would hate to see you go to stage IV.  I believe in God but I also believe God gave us the ability to make medicines.  Maybe you can do something herbal and eat cancer fighting foods since you are not big on chemo but once you go stage IV there is no going back so really consider what you are risking.  It's usually a life long maintenance program at Stage IV where as at stage III you have the chance to be NED (no evidence of disease - which pretty much equates to cured after 5 years).  We all have to make our own choices but I think this was presented really wrong to you. Meanwhile I hope the nausea passes.  There are medications for that also that works wonders.  The fatigue though is what it is.  Sleep, sleep, sleep.   I'm 44 (diagnosed at 40), 3 kids and grandbaby=)  It's so hard when you're going through it but there is another side.

Helen321

Easyflip said:

Hey Kimber,

I respect your right to make your own decision but I wanted you to know that I was Stage 3 also who went to a stage 4. I had chemo and liver resection and 2 of my oncologists have said I may be cured. Not NED but cured! So I think it is possible to at least live a long time with this if not be cured altogether. It sounds like you don't want to do chemo because of the ostomy bag, is that right? Maybe reversal can wait til after chemo or maybe it becomes permanent. I don't think that's too bad a trade off for your life. Many say it's an inconvenience but it's not too bad once you get used to it. Best wishes with whatever you decide. Good luck and keep us posted.

Easyflip/Richard

That was going to be my

That was going to be my question too because as I've mentioned, my doctor told me there was a risk of no reconnect because of my tumor location and so he might have to do a permanent ostomy and unfortunately, it turns out that was my only option.  I went through a period of depression and came out the other side okay.  Something just doesn't sound right with what this doctor is saying.  It's not even an inconvenience, it's actually quite convenient, no worrying about running to the bathroom ever.  It's more of an adjustment for body image, adjusting to your new physical appearance.  Totally worth saving your life though.  It was either a bag or death and so it was an easy choice.

LindaK.

Helen321 said:

I'm confused as to why the

I'm confused as to why the doctor didn't offer chemo afterwards.   Stage III has an excellent survival and even cure rate although cancer doctors don't use the word cure, it presents the opportunity for law suits.  I'm two years NED at stage III, two surgeries, chemo, rad.  I would hate to see you go to stage IV.  I believe in God but I also believe God gave us the ability to make medicines.  Maybe you can do something herbal and eat cancer fighting foods since you are not big on chemo but once you go stage IV there is no going back so really consider what you are risking.  It's usually a life long maintenance program at Stage IV where as at stage III you have the chance to be NED (no evidence of disease - which pretty much equates to cured after 5 years).  We all have to make our own choices but I think this was presented really wrong to you. Meanwhile I hope the nausea passes.  There are medications for that also that works wonders.  The fatigue though is what it is.  Sleep, sleep, sleep.   I'm 44 (diagnosed at 40), 3 kids and grandbaby=)  It's so hard when you're going through it but there is another side.

I hate this disease

This entire post makes me so sad.  When my husband's 2nd tumor was removed, he was told about 2 months later there were distant inoperable lymph nodes now suspicious.  We did also seek a 2nd opinion and to this day, I'm still not sure why they were considered inoperable.  I do know he tried everything offered and suggested by all doctors.  Even with chemo, (Folfiri) they did not respond and, in fact, grew to cause more problems like his bile duct not draining and then a week later his duodenum blocked which required 2 palliative stents being placed.

He was diagnosed in December 2013 as stage 2 and within 23 months he lost his battle.  Like I said, he did everything to fight this disease and looking back, I don't know if it was worth all the suffering.  I don't know how I would feel if I was faced with this same diagnosis.  Everyone is different.  He was told initially with 12 rounds of Folfox, he'd have a 90% (or around there) CURE rate.  I can remember my husband saying the first time he heard those statistics "Well. SOMEbody has to be in that 10% failure"  He was right.

You know what else, he's been gone almost 4 months and I have not heard ONE word from any of his former oncologists or any of their staff.  I feel like asking them how do they feel to have failed? 

Still feeling angry,  Linda

Helen321

LindaK. said:

I hate this disease

This entire post makes me so sad.  When my husband's 2nd tumor was removed, he was told about 2 months later there were distant inoperable lymph nodes now suspicious.  We did also seek a 2nd opinion and to this day, I'm still not sure why they were considered inoperable.  I do know he tried everything offered and suggested by all doctors.  Even with chemo, (Folfiri) they did not respond and, in fact, grew to cause more problems like his bile duct not draining and then a week later his duodenum blocked which required 2 palliative stents being placed.

He was diagnosed in December 2013 as stage 2 and within 23 months he lost his battle.  Like I said, he did everything to fight this disease and looking back, I don't know if it was worth all the suffering.  I don't know how I would feel if I was faced with this same diagnosis.  Everyone is different.  He was told initially with 12 rounds of Folfox, he'd have a 90% (or around there) CURE rate.  I can remember my husband saying the first time he heard those statistics "Well. SOMEbody has to be in that 10% failure"  He was right.

You know what else, he's been gone almost 4 months and I have not heard ONE word from any of his former oncologists or any of their staff.  I feel like asking them how do they feel to have failed? 

Still feeling angry,  Linda

Yeah this post has me

Yeah this post has me freaking out a bit.  Mostly because I feel like we've been down this road with others before and we know where it leads so we're desperately saying, give it a try.  I'm sorry that this happened to you Linda and all of us.  I'm angry with you.  I'm angry that we all have to decide whether to put toxins in our bodies or not.  It's such a guessing game. I know how it feels to be that 10%.  The second surgery has me at 93%.  This round I am going to be the 93%.  Someone has to be the 93%.  I'm not saying it the other way anymore!

LindaK.

Helen321 said:

Yeah this post has me

Yeah this post has me freaking out a bit.  Mostly because I feel like we've been down this road with others before and we know where it leads so we're desperately saying, give it a try.  I'm sorry that this happened to you Linda and all of us.  I'm angry with you.  I'm angry that we all have to decide whether to put toxins in our bodies or not.  It's such a guessing game. I know how it feels to be that 10%.  The second surgery has me at 93%.  This round I am going to be the 93%.  Someone has to be the 93%.  I'm not saying it the other way anymore!

Think Positive!

Helen, I'm sure you will be in the 93%!  It's odd how our roles reversed during this cancer battle.  Before cancer, he was usually the positive one and I was more cynical.  I had to stay positive through it all or I would have stayed in bed and pulled the covers over my head.  He had a "bad feeling" all along and I guess he should know, it was his body.

I still wonder sometimes how it would have played out if he never had chemo...

skeets1961

Kimber, 
i too, believe in

Kimber, 

i too, believe in the power of prayer.  But like someone said, God has made these medications available to us.  My husband was dx stage 4 colon cancer last October.  He has only had 5 treatments so far.   I admit, he feels fatigued most of the time, nauseated and has lost his appetite.  But, if chemo gives him extra time to hopefully one day see that first grandchild be born i know it will be worth it. At first i wondered if he should try the natural way with healthy foods and supplements instead of chemo but i thought that i had never heard of anyone claiming that had cured them.  I thought it was taking too much of a chance.  I guess we felt more comfortable with going with the flow.  I will pray for your situation Kimber and for guidance to do what is best for you and your children.