T3cN2a, refusing chemotherapy?

[Swede]

I had low anterior resection 2013-04-29 for a rectal carcinoma 10 cm up. MRI before surgery was T2N0M0, no signs of metastases anywhere. I am 45 years old, otherwise completely healthy.

However the pathologist found 4/38 lymph nodes to be metastasised. And the cancer had grown 6mm out of the colon wall. So now I am T3cN2a.

My oncologist, my friends and my family all want me to take chemotherapy (Xeloda and maybe oxaliplatin in addition I suppose). However I am thinking about saying no to any additional therapy. I still have 50-72% chance of being cured, even without chemotherapy. Chemotherapy will increase my survival chances to 65-80%, if I understand correctly. But if I am healthy to begin with, I am 100% certain to get the crippling side effects of chemotherapy if I decide to take it.

Anyone who has had similar thoughts? Am I crazy?

[SoConfused]

your lymph node involvement along with T3 tumor put you at a higher than acceptable (for me at least) risk for recurrence ... 4 nodes (N2) means your risk is even higher.

I understand your hesitation about chemo, but given your young age, if I were in your shoes, I'd do the chemo. Ask yourself this question: if you don't do the adjuvent chemo and have a recurrence thereafter, how would you feel? of course there are no guarantees in life ... by having the chemo, you wouldn't necessarily completely eliminate your chance of recurrence ... but at least you will have done all you can to fight back.

[rickker20]

I had low anterior resection 2013-04-29 for a rectal carcinoma 10 cm up. MRI before surgery was T2N0M0, no signs of metastases anywhere. I am 45 years old, otherwise completely healthy.

However the pathologist found 4/38 lymph nodes to be metastasised. And the cancer had grown 6mm out of the colon wall. So now I am T3cN2a.

My oncologist, my friends and my family all want me to take chemotherapy (Xeloda and maybe oxaliplatin in addition I suppose). However I am thinking about saying no to any additional therapy. I still have 50-72% chance of being cured, even without chemotherapy. Chemotherapy will increase my survival chances to 65-80%, if I understand correctly. But if I am healthy to begin with, I am 100% certain to get the crippling side effects of chemotherapy if I decide to take it.

Anyone who has had similar thoughts? Am I crazy?

Hmmm crippling side of effects of chemo or 6 feet under? 8% is better then 0%

[Hapa]

While talking to the radiologist oncologist regarding treatment options, he said 'the horse has left the barn". Meaning now you have no idea where the cancer will go-best chance is chemo (& chemo/radiation if it was rectal cancer)The chemo side effects vary from person to person. You are not 100% guaranteed that you will suffer permanent side effects. Cancer is a sneaky beast - I would personally throw everything I could at it.

[slchapma]

I have been toying with not doing the chemo as well.

I am a 43 year old female, married with two children (one in college and the other a junior in HS). Went in for a small bowel obstruction on 4/22/13 and they found a cancer tumor. Had an extended right hemi colon resection and the tumor had evaded the colon wall by 2 cm and had 6 out of 38 lymph nodes affected. Now I understand the next place the cancer would travel to is the liver. During my resection they did some exploratory work and the liver appears healthy and from the 5 or so CT scans I had while in the hospital nothing appears there as well.

I am going in for a PET Scan to check but my oncologist is really pushing the FOLFOX6. The risks of the chemo seem so high to me. Really struggling with this decision.

[nicola smith]

No brainer for me...take the chemo. My understanding is that Xeloda is converted in the body into 5FU. 5FU is the drug that has the greatest impact on cancer. According to the literature I've seen, 5FU and Xeloda can be associated with swelling of hands and feet (hand/foot syndrome) but this is rarely long term (YMMV).

Here, at least, the usual treatment for cancer at your stage is Folfox - which is 5FU plus oxaliplatin. Oxaliplatin improves the survival rate of people with stage 3 cancer like yours.

http://www.medicalnewstoday.com/articles/240757.php

It's the oxaliplatin that causes neuropathy and doses of this can be lowered when/if you start to feel the effects.

I took a full course of Folfox (12 reatments over 6 months). I had no reaction to the 5FU but I did get permanent neuropathy from the oxaliplatin. At this time, it's barely noticeable in my fingertips and uncomfortable in my feet...but still very manageable.

In your shoes, as others have said, it would be good to throw everything at the disease that you can...but, as a minimum, seriously consider doing the 5FU/Xeloda.

Good luck with whatever you choose.

[lydia123]

Sorry about the diagnosis. Very similar to my husband's initial "best guess" before the path report, and bad news after.

Well, you asked: "am I crazy?"

Not sure about crazy, but I think perhaps blinded by fear? There's no way I would opt out of chemo with lymph involvement. By definition, the lymph involvement means that your tumor cells already know how to spread, since they did so. Personally, I think it is crazy to think your doctor caught every single last cell....

In your shoes, I would do the chemo. Yeah, it sucks, and the effects can be long-lasting or permanent. It is dangerous, too. However, you do have metastatic cancer and presumably good doctors to help you through this. Also I don't know where you got your "odds," but they are far different than what we were told: pretty much 50/50 without chemo, 5-FU/xeloda buys another 20 and Oxi buys another 5-8 over that.

Good luck to you.

[skypup]

Okay, you are hearing from someone who said "no more chemo" at a relatively early stage of metastatic cancer treatment, and I am very happy with my decision. But when there was a chance for a cure (I was staged @ T3N1M0), I went for it full on. Why not give a whole-hearted effort at a cure? You won't get that chance again! If you miss it, it's hello death penalty, just about. Chemo sucks, no getting around it, but I worked through it as did so many others here. And I am a massage therapist -- that's hard work! Was it easy? No. But doable. I have permanent neuropathy, but it really isn't that big a deal. My advice echoes the others: pull up your big kid underpants and get ready for a ride... hopefully to a Cure!

Oh, btw, I don't have permanent effects from 5FU/Xeloda, just from oxaliplatin, and many of the most difficult side effects for me during treatment were from oxi. Might you consider just not doing the oxi if you are serious about opting out of chemo? I don't think oxi buys a whole lot of improvement in the odds as I recall (be sure and check this out), and it would save you much of the chemo difficulty... if that is your concern...

[chrissyrice]

I had almost the same stage as you and had clear margins with surgery. I seriously at first talked to my oncologist about not doing chemo.

Thank God he told me that we could talk about it but that I needed to do the chemo for survival. Now I think he is the smartest man I have ever met.

I have learned more on this board about the benefits of chemo and getting me to almost 3 year NED. It is not about how young you are... it is about the cancer in your body that is still there. You need to do more research on these facts before you decide to not do chemo. Your cancer got through to your lymph node system.

Chemo is no party for sure... but at your age you should do it!!! You will recover much faster and your survival % goes up as well each year that there is no return of active cancer.

You can always stop... but you can't go back to this very important decision when another lymph node appears down the road... Lucky for me that when a new lymph node appeared, that was not taken out during surgery... the scan showed that the chemo had already killed it.

Good Luck!

[SkiFletch]

But if I am healthy to begin with, I am 100% certain to get the crippling side effects of chemotherapy if I decide to take it.

False.

Though the benefits of chemo are dubious in an adjuvant setting, your age and health going into chemo have almost no bearing whatsoever on how severe your side effects will be. When I was first starting chemo, I sat with a 70 year old man who was towards the end of his 12 cycle folfox regimen. He said his side effects were minimal and no big deal all the time. He was older and frail and had no serious side effects. I also had few serious side effects. Annoying ones, for sure, but nothing debillitating at all, and I was young/healthy. I've met plenty of folks on this board whom have had little to almost no side effects of varying ages and health. Likewise I've met plenty who have had difficult side effects of varying ages and health. Bottom line, making blanket statements about what group of people will get severe chemo side effects is pretty useless.

Moving on, chemotherapy for colon cancer is nowhere near as bad as you may have been led to believe. I'm not going to say it's a walk in the park, but it's far from the debillitating nightmare modern cinema/TV will have you believe. I can promise you that you will have far more good days than bad during chemotherapy. I can also promise you that you will NOT know how bad the treatment is without trying it. There are many ways we may be able to assist you in your journey through chemo, so you won't be alone. Also remember there are multiple different types of chemo, and it is possible to do just a 5FU and/or Xeloda course of chemo and really have very few side effects at all. You can also try heavier duty chemo like folfox and if it's debillitating and you hate it, you can stop doing it. It's not like chemo is some contract written in un-breakable stone. You can start/stop/try things, etc.

Lastly, you do not mention having gone through chemo/radiation prior to surgery. This would make some sense when they initially thought a T2 tumor. IF this is true and you have NOT had chemo/rad, the stats you're quoting are only correct for distant recurrence (ie liver, lungs, lymph, etc). You will have a significantly higher risk of local recurrence with the deeper penetration through the wall seen in pathology for rectal cancer. That risk is separate from and in addition to your systemic risk. I don't know the exact numbers so I won't try and quote them, but I do know that the benefits of chemo/rad in preventing LOCAL (ie pelvic) recurrence are much greater than the 7-12% boost systemic folfox gives. Chemo/rad has a far greater positive impact on local recurrence (and by association overall survival) than systemic folfox does. I would STRONGLY suggest doing that as a minimum. It can be done post-operatively so your "window" for doing it has not closed.

Long story short, talk with your doctors, try and remove blanket assumptions from your opinions, and lean on us here for support. Always ask yourself when choosing to treat or not to treat, "If I choose to NOT do treatment, AND the cancer returns, will I kick myself for that inaction?" If you can TRULY answer "no" then feel free to refuse treatment.

[PGLGreg]

Am I crazy?

Yeah. With stage 3 CRC, you should not refuse chemotherapy. With stage 2, it may be arguable (though I got chemo for stage 2), but not stage 3.

[luvmymom]

Slchapma wrote

Now I understand the next place the cancer would travel to is the liver. During my resection they did some exploratory work and the liver appears healthy and from the 5 or so CT scans I had while in the hospital nothing appears there as well.

The resolution of medical imaging devices is limited (I am an engineer who works on CT, by the way). So no matter how many scans you had, those scans would have only shown metastases if they were above a certain size. Actually, all the imaging my mom underwent to stage her tumor (PET-CT, CT, MRI) wasn't even good enough to tell whether her tumor was T2 or T3. I really doubt that exploratory surgery could detect a micrometastasis, either; a surgeon can see a tumor, but only a microscopic pathological analysis of lymph nodes can determine whether cancer cells are present or not. Not to mention the liver is only one of several places colorectal cancer can go.

You can always stop the chemo or reduce the dosage if the side effects become too bad.

What you cannot do is turn back the clock: Clinical literature says that adjuvant chemo is most effective immediately after surgery, and the longer the delay, the worse the prognosis.

[Coppercent]

Chemo or no chemo is your choice. I really don't understand the comment crippling side effects. I did 28 treatments of chemo radiation with the chemo being Xeloda. And I did eight treatments of Folfox followed by two treatments of Xelox and a couple more rounds of Xeloda. Granted I chose not to do the 12 rounds of just Folfox because I wanted to be side effect free after chemo which I finished chemo last June and two weeks after my last treatment I was back to my old self with no lingering side effects. My oncologist and I worked hard to determine enough chemo while ensuring quality of life after chemo. I was healthy going into treatment. I am training now to run a half marathon in October. So chemo does not mean a crippling life after treatment. Whoever gave you that information was not very knowledgeable about chemo treatments. You may want to Discuss all treatment options with your oncologist before making your final decision. Good luck on whatever you decide to do. There are no guarantees with chemo or without.

[Bev G]

Hello. I have no intention of piling on here....BUTT....ask one of us with stage IV disease if we would have purely jumped on the chance to prevent the spread of our cancer! Seriously, take the chemo, if for no other reason that you will never ever have to second guess yourself about not having done it. There are some things you just don't get "do-overs" on in life. This is almost certainly the most important "do over" you never want to miss.

Best to you,

Bev

[Kellie]

You're crazy. Well, you asked.

After my resection at age 46,  I was stage III with only 1 lymph node affected. I elected to have chemo  (Folfox). When I was done with treatments I remember saying, " If I had it to do over again, I wouldn't have had the treatments."  I was pretty confident, as was my surgeon and oncologist, that it had not spread. My oncologist even had me get my port removed.  Unfortunately, 8 months after my last treatment a met was found in my lung. 

If I didn't have the treatments, I would be beating myself up and wondering if my reoccurrence could have been avoided. Now at least I know I did every thing I could. No regrets.