T3cN2a, refusing chemotherapy?

[kimmercans]

I don't see that Folfox outweighs the risk of disabling side effects in most cases. I opted out...but I was stage 2, with worrisome prognostic factors. I feel that an intact immune system is essential for cure. Chemo weakens the immune system.
Whatever you decide...wrap your heart around it...no regrets, regardless.
Best of life,
Kim

[alphagam]

I've waited awhile to post, but I believe that is totally the patient's choice. I've only had an transanal endoscopic microsurgery, no chemo, Stage 0. Up until That day, we were in a "you have rectal cancer fog" and were looking at chemo/rad, APR, permanent colostomy and more chemo. We thought it was T3 tumor. I was very fortunate, our prayers were answered. But at 2+ years out, I've overheard family members state that they are so happy I didn't have to get "the bag" and other things. I've thought and prayed so much about this and I am at peace with my decision. If there were a recurrence, I would not go through treatment. I do not want to die at home. I have made my choices and done all the legal stuff to make sure my wishes are carried out. My baby is almost 29, so no small children. I have a granddaughter and a grandson due in Sept. I will spend as much time as I can with them, but I have faced my mortality head on. With a Stage 0 diagnosis and being 2+ years out, I'm probably in the clear and I probably won't die of rectal cancer. But I've made the choices for whatever the future brings. No one is wrong in this situation. Treatment is the best for the large majority out there, especially if you have small children and most especially if you want more children! But it is not right for all, me included.

Kathy

[Buffy61]

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?

Yes, I believe you are crazy!! I dont think those statistics are something I would be comfortable with gambling with!! My partner has a similar diagnosis but in transverse colon (not rectum). He didnt really get offered a choice...thankfully!!
I cant say I blame your family and friends for wanting you to have the chemotherapy...it improves your odds of being alive in 5 yrs time. I guess they love you and want to spend another 40yrs with you... hence their desire for you to do everything you can to survive!!
Sure, chemo sucks! But while it is making you feel like crap it is also making all those cancer cells that are tucked away... they feel crap too as they die!!!
Not everyone has side effects that last forever. Doses can be decreased if symptoms become too much. Everyone is different and your treatment will be titrated according to how your body reacts to it.
Oh and being healthy makes very little difference to anyone getting cancer or surviving it. My parter was a fit 50yr old gym bunny and he still got cancer!!
Good luck...I hope you make the right decision that both you and your loved ones can live with.

[kellywin]

Swede - I don't have a lot to add to what the others have said except that I understand not wanting to do the chemo, who does? In the beginning I kept trying to find someone that would tell me I didn't need to. I battled with my Oncologist, Surgeon and Radiation Oncologist, all of them said, yes, you need to do it. It took some time, but I accepted that this is what I needed to do. Especially when the pathology came back after surgery and there were 7 lymph nodes positive. How can I argue that it had already spread and no one can guarantee there aren't more cells out there that are undetectable? If Xeloda only is an option, why wouldn't you do it? I was on Xeloda 5 days a week for 5.5 weeks prior to surgery and I'm on it now (with Oxaliplatin). I've had absolutely ZERO side effects from Xeloda. Honestly, it did nothing to me. I had zero fatigue (even with radiation), no hand/foot issues, nothing. I've been on Xeloda with Oxali, just 2 infusions so far, yes the Oxali sucks for a few days, but in the grand scheme of things it's not the end of the world. I'm sure things will get more difficult as I have more infusions, but I'm working while on it. Just need a couple of days of after the infusions and then I'm back to work.

Good luck with your decision.

[MNPuckGuy]

I was a stage IIIB diagnosed in February of this year. Surgery went well with excellent margins. 2 out of 15 nodes positive.

At 49, I was in pretty good condition....playing hockey year round and in the summers against NHL, minor league and D1 college players in their offseason. Still could use to lose about 20 pounds though to keep up as I am slowing down! I think being in good physical condition will help you with the fight....but it does not mean you are immune.

As my surgeon stated to me...when he left residency in the late 80's...maybe 10-15% with my condition would have a survivability of five years. A decade ago that was up to 50%...today he said the surgery and chemo drugs have gotten so good that it is 90%+.

As it was laid out to me by my Oncologist...five year survivability without chemo with stage IIIB was approx. 75 percent. She said, essentially, I am cancer free right now from the surgery....but the possibility of remaining cancer cells that were not caught in tests could still be in me. Folfox regimen has shown to increase the survivability by 15-20 percent. For me, chemo seemed to be a no-brainer with the facts laid out.

I am halfway through my 12 sessions of Folfox. I have had neuropathy that seems to last approximately 7-8 days after my treatment. Unfortunately, there is a shortage of Calcium/Magnesium that would help further minimize neuropathy effects, so I have not received that with my last four sessions. From there, I can pick up and handle a cold non-alcoholic beer without having any side effects in my fingers. Thankfully, we are moving into summer for the rest of my treatments where it will be warmer outside and I will have little major side effects. I have had elevated constipation resolved by Milk of Magnesia...but not the diarrhea many talk about....maybe that's to come in the second half!

Fatigue - definitely you will have, but that too fades between treatments......four days after this last treatment I went to pull dandelions in the yard to get up and do something....I could pull approx. three dandelions before I would need to sit down for five minutes. Six days (yesterday) I split 20 hostas without having to take a break....but then relaxed for an hour afterwards. I probably, for the first time in 45 years won't be skating much over the summer as the fatigue may be just too much for that level of exertion....but walks and biking are still in.

The Folfox chemo isn't fun. I best describe it to friends as 4-5 crappy days surrounded by 9-10 pretty good days....wash, rinse, recycle. Live for those 9-10 days and do your best on the 4-5 crappy days. Before saying no to chemo...have an additional conversation with your docs (primary, oncologist, and surgeon).

[ab123]

I was T3N2 as well, also very healthy otherwise, and am 39 years old. My surgeon said I had about a 50/50 survival chance with surgery alone and FOLFOX would make it more like high 60s (not sure how that fits with the various stats quoted here - also unlike you I had radiation pre-surgery).

I just finished the FOLFOX and had my ileostomy takedown last week. FOLFOX is not that bad. I had some neuropathy, mild nausea, and some fatigue, but it wasn't too bad - and the neuropathy is already practically gone - I notice it a little in my feet when I walk on cold tile barefoot - hardly worth mentioning. During treatment I went to work fine, played with my young children, never lost any weight, didn't lose my hair. I'd say out of the 14-day chemo cycle I was pretty beat for maybe 3 of those days - but could still do stuff.

1 week post surgery (today) and almost 4 weeks post chemo, I'm ready to do anything. If it weren't for the advice not to exert myself for a few weeks post surgery (hernia risk I guess) I'd be running, biking, playing soccer and whatever - and I will be doing those things very soon. Don't worry about the side effects of chemo. It's just not that bad. Being in good shape and young probably makes it easier. And if it gets super bad, as others have said, you can always stop - but odds are it won't.

[bellavida]

There are other options to folfox. I chose to take xeloda only. My doctor told me that oxalplatin (sp?) increases my survival chances by 3-5%. Had it been 20 or 25 or more I would have done the infusion. My husband works offshore and we have 2 young children at home. I didn't think I could be that sick and take care of them as well when he was away at work. I started out with 4 pills in the am and 4 in the evening. My hand and foot got pretty bad so she reduced it to 3 and 3. So far it's been better. I do have some side effects but not nearly as bad as if I had done the infusion. Ask your doc if just xeloda pills are an option.

[Kathryn in MN]

You don't have to take an all or nothing approach. You can start chemo and if the side effects are too much, it can be tweaked - dosages lowered and/or drugs dropped. If you took Xeloda and Oxaliplatin and started getting neuropathy, you could refuse any more oxaliplatin and just take the Xeloda. If that was too much you could get the dosage reduced on the Xeloda.

Personally I have a love/hate relationship with chemo. I hate it - it is very hard for me. But it keeps me alive. I would not still be here without it.

Just my own personal opinion of what I would do myself, knowing what I do now after dealing with this for years - if I were in your situation I would do the Xeloda for certain. I'm not positive about the oxaliplatin - I'd have to think about that. I'd probably start it, but end up not doing the full course, and finishing up with Xeloda.

The most important question to ask yourself is "if I don't do chemo and the cancer progresses/recurs can I live with myself?"

[JennyB]

Just adding my two cents (and I'm a caregiver, so I realize that I have a different frame of reference). My husband was diagnosed with stage 3c, 15 out of 36 lymph nodes involved. There was no question that he would do the chemo. You keep mentioning "crippling" side effects, which I think is a bit hyperbolic. Yes, chemo sucks, but six months of suckage is worth saving your life. My husband only missed one full day of work during his entire chemo regiment (he did his treatments on his day off) and his only really terrible side-effect was neuropathy, which went away after a year. They have drugs for nausea. They have drugs for other side-effects. He was also only 34 at diagnosis. He is almost four-years cancer free now, and I attribute that to the chemo.

[MWLCW]

Although this is an old post, it really answered so many questions for me that I just had to thank everyone who took the time to respond so thoroughly.

I am a new caregiver to a recently dx husband (3C). We have been extensively exploring whether or not to have the recommended chemo (xeloda) & radiation vs. other alternatives therapies. I'm not too on-board with the chemo-rad due to the fear of the damage it can do.

This thread helped my gain some comfort with the conventional treatment options.

Thanks again.

[Swede]

In the end I ended up doing four rounds (3 months) of xeloda only. For me that was the best compromise of maximising benefits and minimising adverse effects.

To me the crippling effects of oxaliplatin (in particular risk of sterility, but also irreversible neuropathy) was not worth a few extra % chance of disease free survival. I also only did three months instead of the recemmended six of adjuvant cytostatic chemotherapy, since studies have shown no added benefit of doing six months compared to three months.

I also did not do any radiation. Yes, it does reduce risk of local recurrence with a few per cent, but for me it was not worth the cost. Radiation will kill off sperm production irreversibly with certainty, and having more children is important to me. Also radiation will cause irreversible damage also to healthy tissue in the rectum area.

Everybody has to make their own priorities in life. Standard recommendations do not fit everyone. For me xeloda only for 3 months was a good balance risk/reward. It would still give me the bulk of the risk reduction for recurrence, while avoiding almost all side effects. I tolerated xeloda well, except for hand/foot syndrome which gave me blisters on my feet after running.

I now have a healthy pregnancy . Sperm freezing was not an option since my sperm do not freeze well.

[pog451]

We have been extensively exploring whether or not to have the recommended chemo (xeloda) & radiation vs. other alternatives therapies.

There is no "vs." Its your choice to do chemo or chemo-rad or not, but be clear that not dong it is equivalent to doing nothing, not following an "alternative" path. There is no viable and effective (/proven) alternative. There are people who choose not to do the chemo and there are those who have a great results with that, but I did the chemo and had a recurrance anyway. I don't have to kick myself for not doing chemo, but I do wonder if the three months of just Xeloda before my liver mets were discovered should have been full-blown Folfox.

I'm not too on-board with the chemo-rad due to the fear of the damage it can do.

Don't forget that the damage can also be nothing. People posting on here are heavily skewed towards "I have a problem and want a solution"- There are plenty of people (Im one of them) who had the immediate problems with chemo/rad but no lasting ones and who also get along pretty well with Folfox.

[Swede]

"There is no "vs." Its your choice to do chemo or chemo-rad or not, but be clear that not dong it is equivalent to doing nothing, not following an "alternative" path. There is no viable and effective (/proven) alternative."

I completely agree with pog451. I am completely aware that not doing chemotherapy/radiation equals to doing nothing. There ARE no alternative treatments that have any evidence of working.

However for me, and probably some more, doing nothing or only doing a little is better than doing everything possible. Because the price to pay is not worth the possible benefits.

[Bob_Weiss]

I was nervous about taking Folfox which my first oncologist insisted was the only acceptable chemo for me, so I switched oncologists. The second dr. specializes in Gastrointestinal oncology (not Hematology/oncology like the first dr.), and he was willing to put me on Xeloda only. The only side effect was moderate hand/foot syndrome which did not interfere with daily functioning. I'm 3yrs 8mos. NED, and dr. thinks my likelihood of a recurrence is now down to 10%.

[mstults]

Take a few treatments then re-evaluate the situation.