Colon Cancer Treatments and Decisions
I am looking for others with similar experiences to help me make some very critical decisions. I am not a huge fan of doctors in general. I think too often they just recommend what is good for MOST people. A lot of this has to do with legal liability and your insurance coverage. If I sound cynical it is because I am.
Thanks for any and all comments.
tom b
Comments
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Be on top of it
Tom
By your account it seems it is in the Colon only, well whilst I am the partner of a cancer sufferer and not the actual person, you want to get it all out, stop it spreading and ensure you stay healthy.
Chemo is another issue, but if the polyps turn cancerous and spread then you will have even more issues to resolve.
Gary0 -
hello
I'm a caregiver of a family member with colon cancer. I have no insight to your situation but I did want to post that I'm sorry this happened and I do wish you all the best with the tests you have had and may have in the future.
*HUGS*
Marianne0 -
Hi....Marianne313 said:hello
I'm a caregiver of a family member with colon cancer. I have no insight to your situation but I did want to post that I'm sorry this happened and I do wish you all the best with the tests you have had and may have in the future.
*HUGS*
Marianne
My tumor was found in colon also...... removed 11" but it had burst thru colon wall and spread to distant organs...no node involvement..but still put me stage IV. I have done chemo and it has its advantages but LOTS of disadvantages also. You do not want to be here if you can AT ALL avoid it. My Opinion.... get ALL removed from inside BEFORE they turn into cancer. If you can avoid doing chemo at your stage...perhaps thru alternative methods such as diet, juicing,herbs, supplements.... I would look into that as well. You have a great frame of mind for dealing with this and I too never place myself in the "MOST" catagory..... I prefer to stay in a catagory all my own. Take care.
Jennie0 -
My story is similar
I went to the ER Sept '06, thought I had appendicitis. No...colon cancer, emergency surgery, 7" of my colon and the tumor removed. 14 lymph nodes removed...NO sign of disease. Dr thought no chemo necessary and I was stoked. Did blood tests every 3 months for a year and a half...started to feel crummy and insisted on a PET. Guess what...lesions in liver and lung!!!! Stage IV just like that. When we went back and looked at all my old scans...the liver lesion was there ALL along, they just missed it somehow. Bummer. I should have done chemo, shouldn't have been so quick to think I'd dodged a bullet. I did do chemo from June '08 to Feb '09, plus a clinical trial drug, stereotactic radiation in the middle, Xeloda for 6 months after all that. I'm good now...have had clean perfect scans since Feb '09, CEA is undetectable. My fingers are still crossed...but my advice to you...get a second opinion...and do whatever it takes to MAKE SURE you've gotten rid of everything. Mine was a comedy of errors on a lot of levels and I can't help but think I might have saved myself a lot of icky months if I'd not been so quick to think all was well with just the initial surgery.
Laurie0 -
Similar to Laurie, got successfully and very very cleanbiglaur said:My story is similar
I went to the ER Sept '06, thought I had appendicitis. No...colon cancer, emergency surgery, 7" of my colon and the tumor removed. 14 lymph nodes removed...NO sign of disease. Dr thought no chemo necessary and I was stoked. Did blood tests every 3 months for a year and a half...started to feel crummy and insisted on a PET. Guess what...lesions in liver and lung!!!! Stage IV just like that. When we went back and looked at all my old scans...the liver lesion was there ALL along, they just missed it somehow. Bummer. I should have done chemo, shouldn't have been so quick to think I'd dodged a bullet. I did do chemo from June '08 to Feb '09, plus a clinical trial drug, stereotactic radiation in the middle, Xeloda for 6 months after all that. I'm good now...have had clean perfect scans since Feb '09, CEA is undetectable. My fingers are still crossed...but my advice to you...get a second opinion...and do whatever it takes to MAKE SURE you've gotten rid of everything. Mine was a comedy of errors on a lot of levels and I can't help but think I might have saved myself a lot of icky months if I'd not been so quick to think all was well with just the initial surgery.
Laurie
colon and liver resection ,decided not to do chemo and just a few months later got a recurrence wish to have done chemo! I'm an strong defender of chemo but it's your decision my friend and not an easy one, just think side effects can variate from one to the other, in my case chemo is very manageable until now just done my 8 th round now !
Hugs!0 -
Quality over Quantity
I've been doing chemo over a year and my quality of life has been GREAT. Lately I've suffered from some shoulder pain from Avastin (which is NOT CHEMO)so will probably stop that. Quality of life, watching my grandson grow, going to college full time, tending to my garden, mowing my lawn, yep, doing chemo all this time and I still have quality of life, so my advise is to think long about it, because believe it or not those of us that do chemo and end up living for years and years (plan on being one of those) we have QUALITY and QUANTITY. Just saying.
Winter Marie0 -
I'm in agree with you Winter despite all must agree is not funherdizziness said:Quality over Quantity
I've been doing chemo over a year and my quality of life has been GREAT. Lately I've suffered from some shoulder pain from Avastin (which is NOT CHEMO)so will probably stop that. Quality of life, watching my grandson grow, going to college full time, tending to my garden, mowing my lawn, yep, doing chemo all this time and I still have quality of life, so my advise is to think long about it, because believe it or not those of us that do chemo and end up living for years and years (plan on being one of those) we have QUALITY and QUANTITY. Just saying.
Winter Marie
if for life ! But not been an stg,4 I thing is worthy just to have some months of chemo.Not a big deal for me, 2 years going on and off with chemo !
Hugs !0 -
Hi Tom
Since it wasn't found in your lymph nodes and in any other organs (correct?) it sounds like you'd be Stage I? I think your doc make be too anxious to do more surgery and/or treatments that may not be needed. Too often they can tend to overdo things, probably to protect their own colons from lawsuits! I probably would look into dietary changes and try to keep an eye on your situation through less extreme measures like blood-work and other non-invasive tests. I would not be keen on chemo if things looked pretty good.
I strongly agree with the quality of life issues.
I was 46 and diagnosed with stage IV colon cancer so I took a more aggressive approach to my treatment and did chemo etc. I trust my oncologist and agreed with her plan of attack and have no regrets at all. (as far as THAT goes...other things are another story!)
Best of luck to you...
-phil0 -
I had a tumor in the colonpepebcn said:I'm in agree with you Winter despite all must agree is not fun
if for life ! But not been an stg,4 I thing is worthy just to have some months of chemo.Not a big deal for me, 2 years going on and off with chemo !
Hugs !
I had a tumor in the colon which was removed along with 27 lymph nodes. 22 of those were positive for cancer, which caused spread to the liver. 15 tumors are in the liver. Your situation is far better than mine. If it were me, I would have more of the colon removed, whatever they suggest. Living without some of the colon is not bad for me. I had about 18 inches removed...don't even know anything is missing. The big deal is the liver. You DEFINITELY DO NOT want this to spread. So, sounds like you can "nip this in the but"....so to speak. I had 5 rounds of chemo...wasn't so bad for me. All tumors in the liver have shrunk to nothing, but I will still need major portion of the liver removed, and this is all to prevent recurrence. You are in a good position, my friend, to take care of this. I consider your age to still be very young. I don't know your other medical history, but my parents are 94 and 95 and loving life. It is your decision, but I would be proactive if it were me, considering my health otherwise is very good. Keep us posted.0 -
Hi Tom:
Welcome to the Board. Cancer sure sucks. My hubby was diagnosed 3/09, Stage IV, mets to liver and lungs. Chemo is no fun, no doubt about it but it is doable. He worked full time through treatments but for infusion days.
I totally respect your thoughts on no chemo. It is your decision but I sure hope you weigh all your options.
You said your colonoscopy showed 40 plus polyps and the doctor wants to do another resection. Before making any final decisions regarding treatment wait for the pathology from those 40 plus polyps. Are they cancerous, pre-cancerous, just an annoyance or what. Once you have a complete picture then make your decision.
George met a lady in the chemo lab on Monday. She had a colonoscopy a couple years ago, they found a cancerous polyp and it was removed. No resection, no follow up. Well, she went for her annual physical and doc told her something not right. Long story short, she has cancer in her liver and lungs, it is metastatic colon cancer from that one little polyp a few years ago that was not properly treated. Had she had a resection and some follow up tests, etc., she would not be where she is today. She just said she wishes she had known and investigated that cancerous polyp a few short years ago. She said she feels fine so how can she be so sick. That is a story repeated over and over on this board, people had no clue they had cancer.
Best wishes and come back and let us know how things go. If those polyps turn out to be just a nuisance, lymph nodes clear, organs clear, I, like you, would be very tempted to say no to chemo but be very vigilant on follow ups.
Take care - Tina0 -
I had a rectal tumor and thegeotina said:Hi Tom:
Welcome to the Board. Cancer sure sucks. My hubby was diagnosed 3/09, Stage IV, mets to liver and lungs. Chemo is no fun, no doubt about it but it is doable. He worked full time through treatments but for infusion days.
I totally respect your thoughts on no chemo. It is your decision but I sure hope you weigh all your options.
You said your colonoscopy showed 40 plus polyps and the doctor wants to do another resection. Before making any final decisions regarding treatment wait for the pathology from those 40 plus polyps. Are they cancerous, pre-cancerous, just an annoyance or what. Once you have a complete picture then make your decision.
George met a lady in the chemo lab on Monday. She had a colonoscopy a couple years ago, they found a cancerous polyp and it was removed. No resection, no follow up. Well, she went for her annual physical and doc told her something not right. Long story short, she has cancer in her liver and lungs, it is metastatic colon cancer from that one little polyp a few years ago that was not properly treated. Had she had a resection and some follow up tests, etc., she would not be where she is today. She just said she wishes she had known and investigated that cancerous polyp a few short years ago. She said she feels fine so how can she be so sick. That is a story repeated over and over on this board, people had no clue they had cancer.
Best wishes and come back and let us know how things go. If those polyps turn out to be just a nuisance, lymph nodes clear, organs clear, I, like you, would be very tempted to say no to chemo but be very vigilant on follow ups.
Take care - Tina
I had a rectal tumor and the resection to remove it and then 9 rounds of chemo. I had one lymph node light up on the PET scan but it was negative when it was removed. My doc said chemo would be an additional boost to make sure a cell was notlurking anywhere. You say " Quality vs Quantity" . you are not old and have so many years left to enjoy your life. It is ultinmatly your decision. I did not have a difficult itme with the chemo, and the few side effects are worth it, knowing that I am still here for my family and to live the rest of my life with the one little thing that cancer does give us, the ability to see life differnt and to live eacvh moment as if it were your last. Take care!0 -
Hi Tom
Welcome to the board.
I am in your age group. I did agressive surgery (colostomy + ) but no chemo or radiation. I am now 15 months past surgery.
There are many things which impact our thoughts and decisions regarding how to deal with having had a cancer diagnosis. I have to say that one for me was the 'quality vs quantity'.
It sounds as if you have results to get yet from the colonoscopy but with over 40 polyps it sounds as if some action might be necessary.
Each and every person needs to consider their own circumstances, their own feelings/beliefs in what the medical community has to offer, and what is most important to them.
The one thing that is absolutely necessary is that whatever you decide, you can beleive now that you will not look back and wish you had taken a different path. You have to believe in your decision 100%.
Best of luck no matter your choice. I hope you will stay in touch with us.
Marie who loves kitties0 -
Winter Marieherdizziness said:Quality over Quantity
I've been doing chemo over a year and my quality of life has been GREAT. Lately I've suffered from some shoulder pain from Avastin (which is NOT CHEMO)so will probably stop that. Quality of life, watching my grandson grow, going to college full time, tending to my garden, mowing my lawn, yep, doing chemo all this time and I still have quality of life, so my advise is to think long about it, because believe it or not those of us that do chemo and end up living for years and years (plan on being one of those) we have QUALITY and QUANTITY. Just saying.
Winter Marie
When did Avastin stop being a chemotheraphy drug? It certainly was when I got it, it was just referred to as a targeted chemo drug that could tell the difference between a cancer cell and a healthy cell versus many of the other chemo drugs that can't.
Just curious, I've never heard anyone say it was not chemo.0 -
2nd opinion
Please get one, this is not something you want to regret down the road. There are many chemo drugs and combinations for colorectal cancer so you might want to see which one/ones he is suggesting.
It sounds like you are stage 1 and I think I remember reading something about the position on chemo for that stage is not completely agreed on giving that the long term effects of some chemos aren't worth the small percentage it gives for recurrence.
But I sure would get a second opinion. I recommend that to anyone that is diagnosed with cancer since if I had not gotten one, I would not be here today. If you can get to one of the comprehensive cancer centers, go there!!!
Lisa P.0 -
Actually I wondered aboutscouty said:Winter Marie
When did Avastin stop being a chemotheraphy drug? It certainly was when I got it, it was just referred to as a targeted chemo drug that could tell the difference between a cancer cell and a healthy cell versus many of the other chemo drugs that can't.
Just curious, I've never heard anyone say it was not chemo.
Actually I wondered about that too, so I looked it up and they have it listed as a chemo. drug. I didn't look to see how it's administered though...do you get it via I.V.? I hate hate hate these friggen infusions!!!0 -
AVASTIN website informs that it ISN'T CHEMOTHERAPYscouty said:Winter Marie
When did Avastin stop being a chemotheraphy drug? It certainly was when I got it, it was just referred to as a targeted chemo drug that could tell the difference between a cancer cell and a healthy cell versus many of the other chemo drugs that can't.
Just curious, I've never heard anyone say it was not chemo.
And had been told by nurses and onc, it isn't "chemo" I'll check why further, I knew before but I've forgotten, and let you know. I do know it's an inhibitor and also used for macular degeneration in the eye (injected in eye)also as an inhibitor.
UPDATE: HERE YOU GO, this is from the AVASTIN site and I quote "Avastin is a tumor-starving (anti-angiogenic) therapy. Avastin is not chemotherapy and works differently."
Here is their web site with the above words on it:
http://www.avastin.com/avastin/patient/overview/avastin/how/index.html
So Avastin hasn't STOPPED being a chemotherapy drug, it NEVER was. I remember thinking Avastin was chemo at first but the onc nurses and onc told me more about it informing me it wasn't when I had mentioned it being a chemo drug.
Winter Marie0 -
Huh, I went on the Avastinherdizziness said:AVASTIN website informs that it ISN'T CHEMOTHERAPY
And had been told by nurses and onc, it isn't "chemo" I'll check why further, I knew before but I've forgotten, and let you know. I do know it's an inhibitor and also used for macular degeneration in the eye (injected in eye)also as an inhibitor.
UPDATE: HERE YOU GO, this is from the AVASTIN site and I quote "Avastin is a tumor-starving (anti-angiogenic) therapy. Avastin is not chemotherapy and works differently."
Here is their web site with the above words on it:
http://www.avastin.com/avastin/patient/overview/avastin/how/index.html
So Avastin hasn't STOPPED being a chemotherapy drug, it NEVER was. I remember thinking Avastin was chemo at first but the onc nurses and onc told me more about it informing me it wasn't when I had mentioned it being a chemo drug.
Winter Marie
Huh, I went on the Avastin site this is what I found Avastin is a tumor-starving (or anti-angiogenic) therapy. Avastin is not chemotherapy and works differently.For mCRC, Avastin is taken with IV 5-FU–based chemotherapy and hits your cancer from another angle.
The purpose of Avastin is to block a protein called vascular endothelial growth factor, or VEGF. Normal cells produce VEGF, but cancer cells overproduce VEGF. Blocking VEGF may prevent the growth of new blood vessels that feed tumors
So, the makers of Avastin have that it's not a chemo. drug on their website, interesting. So, it's administered by infusion...I don't think I'd get it in any event because I had those friggen blood clots, urrrgh.0 -
My oncsmokeyjoe said:Huh, I went on the Avastin
Huh, I went on the Avastin site this is what I found Avastin is a tumor-starving (or anti-angiogenic) therapy. Avastin is not chemotherapy and works differently.For mCRC, Avastin is taken with IV 5-FU–based chemotherapy and hits your cancer from another angle.
The purpose of Avastin is to block a protein called vascular endothelial growth factor, or VEGF. Normal cells produce VEGF, but cancer cells overproduce VEGF. Blocking VEGF may prevent the growth of new blood vessels that feed tumors
So, the makers of Avastin have that it's not a chemo. drug on their website, interesting. So, it's administered by infusion...I don't think I'd get it in any event because I had those friggen blood clots, urrrgh.
Yeh, I remember my onc informing me of that last year when I had referred to it as chemo, since it's given with chemo I assume that's why everyone tends to think it too is a chemo. Like I said I originally had thought the same thing.
Winter Marie0 -
Of course they are going to say thatsmokeyjoe said:Huh, I went on the Avastin
Huh, I went on the Avastin site this is what I found Avastin is a tumor-starving (or anti-angiogenic) therapy. Avastin is not chemotherapy and works differently.For mCRC, Avastin is taken with IV 5-FU–based chemotherapy and hits your cancer from another angle.
The purpose of Avastin is to block a protein called vascular endothelial growth factor, or VEGF. Normal cells produce VEGF, but cancer cells overproduce VEGF. Blocking VEGF may prevent the growth of new blood vessels that feed tumors
So, the makers of Avastin have that it's not a chemo. drug on their website, interesting. So, it's administered by infusion...I don't think I'd get it in any event because I had those friggen blood clots, urrrgh.
The maker of Avastin is trying to get it approved for all sorts of blood vessels type things like mascular degeneration, etc. so they are going to say anything to make that happen. It's all about money.
FYI, the definition of a chemotherapeutic drugs is:
"Any CHEMICAL used to treat cancer. It is usually used to refer to antineoplastic drugs."
Another definition of a non-biased website is:
"Bevacizumab (trade name Avastin, Genentech/Roche) is a drug that blocks angiogenesis, the growth of new blood vessels. It is used to treat various cancers, including colorectal, lung, and kidney cancer, and eye disease."
Sorry but in regards to CRC treatments, it is definitely a chemo drug with it's own list of side effects.
I'm curious as to why you being told it is not a chemo drug is so important to you Winter Marie.
Lisa P.0 -
treatment or notGaryinUK said:Be on top of it
Tom
By your account it seems it is in the Colon only, well whilst I am the partner of a cancer sufferer and not the actual person, you want to get it all out, stop it spreading and ensure you stay healthy.
Chemo is another issue, but if the polyps turn cancerous and spread then you will have even more issues to resolve.
Gary
Two years ago I swore I would never have chemo but when I was diagnosed with rectal cancer I was ready for anything.I had 33 rounds of radiation and 2 rounds of chemo.I just wanted to survive.I am 49 and two years ago I lost my sister to the same type cancer and I wanted to be around for my kids and grandkids so I jumped on it.I am cancer free now,with side effects I admit, but I am working full time and have a 10 month old new baby grandson.(he was #9).I did not have to have surgery ,Praise God, but I do live with pain everyday.One of thsoe side effects.But I manage it well.It is a hard decision but when faced with death I wanted whatever it took to live.Hope that helps.0
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