Chemo with no node involvement

[Brocken]

I had a follow up today with the surgeon who performed my resection. He gave me a recommendation for an oncologist and I made an appointment for April 9th. Out of 18 lymph nodes removed, none had any cancer cells. I will find out from the oncologist if it is recommended to have chemo as a follow up in the event of a recurrence. That being said, while discussing this option with my surgeon he felt that it was highly likely that the oncologist "will" recommend that I will have to undergo chemo as well as have a port to administer this. He feels this way due to the size of the tumor. I am upset about this. Now, obviously I want to do whatever it takes to keep myself healthy and to live a long life but the mere thought of this is scaring the crap out of me:( I know there are many here who have scarier scenarios and I am sorry for whining about this. I just feel terrible and am crying but not in front of my kids:( I am feeling very much like why me? Why should anyone get this horrible disease.. UUGGHH...

[lizzielew]

Hi Brocken - I had my resection at the end of December with no involvement with 20 lymph nodes taken. Everyone, including my surgeon, was surprised that the pathology showed the tumor to be malignant as it tested benign from the colonoscopy. The surgeon sent me to the oncologist, with a "warning" that the oncologist might want me to have chemo but it was her call, not his. I went to the oncologist and went over all the pathology with her and she felt that chemo was not necessary, at least not now. I had a cat scan a few weeks ago which was fine and I see the oncologist in a couple of weeks for blood work. I'll be seeing her every 3 months and will be watched with blood tests and scans. Another friend of mine's father had a similar surgery, similar outcome with no chemo. So, I think it's up to what the oncologist thinks is the right thing to do in your particular case. I know it's easy to say, try to stay calm, as I am still freaked out over the whole situation. I was diagnosed as stage 2A. I hope it goes well for you. Take Care!!

[Grace14]

As you can see from my signature I was also stage 2 with 16 lymphnodes negative for cancer but I was told from the very beginning that I was gonna have chemo after surgery. I think it was probably because of tumor size also. He also told me he wanted to treat me agressivley due to my age! I never asked how big my tumor was but I think I remember my husband saying it was the size of an egg. Anyhow I did 4 months of Folfox which was no walk in the park but I did okay with it. It was by far the hardest part of my treatment but I got through it and so will you.!!! Hang in there I promise you it WILL get better.

[waw4]

Sorry about the cancer diagnosis but it's good news you have zero node involvement.

At stage 2 your onc may or may not recommend a chemo regimen. As a stage 2 you may or may not decide you want to do some form of chemo as a preventative measure.

There are different chemo regimes which might be recommended to you. If you're going the chemo route, ask your onc what alternative regimens they would recommend (i.e. FOLFOX-4, FOLFOX-6, FOLFIRI, 5-FU infusion only, Xeloda pills).

If you decide to do some chemo, perhaps you and your onc would be okay doing Xeloda (the pill form of 5-FU or Flourouracil) - that way you wouldn't need a port implanted.

It is a shock to realize you might be one of those people who undergo chemotherapy, something no one ever expects beforehand.

I would recommend you discuss your options with your onc, take notes, and be as clear as you can on the rewards and risks (side effects) of any of the chemo treatments if any are recommeded.

Post again any time with questions which come up as you go along.

[vwg]

Bless your heart, I'm new to all this too. I had a small cancerous tumor removed,( found on my first routine colonoscopy) ony about an inch in size. 33 lymph nodes removed, 1 being positive. I'm scheduled to take the Xeloda for 12 rounds., staring in April as I will be healed from surgery. My oncologist said the choice was mine as it is your too. Just remember it's your body, your choice. I'm with you on the emotional part, this is a nightmare but remembr you are not alone. This site amazes me with all the knowledge, support and experiences so many share. I think you'll feel better after you go to the oncologist, I believe information is powerful, the fear of the unknown is the worst. We can't deal with something, anything unless we know the facts and our options. Best of luck to you and keep everyone posted. Ginny

[meeko]

I was 2A 0/16 nodes neg. chemo was the very last thing I ever wanted to do in my whole life...I was terrified and cried in the chair when I went for my first infusion. Your young and you have kids...at least do 5fu/leucovoran or pill form of 5fu. Its just insurance! I dont think you will be sorry you did it but you might be if you dont. Im 3 1/2 yrs out..so far okay and so far very glad I did it. Just my opinion

[weisssoccermom]

Hi there,
Glad you found our group (sorry you had to though). First of all, I want to remind you that this is YOUR decision and one that you have to live with. That being said, I also want to remind you that this isn't an 'all or nothing' choice. Too often, oncs tend to want to take the stage IIA and either do the full blown protocol or nothing. There IS something in between and you need to be aware of all of your options.
You don't state whether or not you had any negative prognostic factors from your pathology reports; if you did, that seriously could make your decision a little more difficult. Assuming you don't, you need to know that you basically have three options:

1. you can do nothing
2. you can do either 5FU/leucovorin or Xeloda
3. you can do FOLFOX or XELOX

The studies for a stage IIA patient with NO negative prognositic factors really don't show that the addition of oxi offers a signficant benefit but that's something YOU have to decide for yourself. I would definately NOT recommend the first option either. Even though your odds are low for a recurrence, why take the risk of doing nothing?? Yes, if you didn't do anything and it did come back you could/would do full blown chemo then but WHY take that risk?? Why not attempt to kill off any potential cancer cell before it regroups and becomes an army of cancer cells? Personally, if it were me, I would go the Xeloda route. It truly isn't that bad, doesn't require a port, has the psychological advantage of allowing you to get through treatment without really 'looking' sick and since the 5FU (Xeloda) does the vast majority of the work anyway, why not maximize all your chances and give it a try??

Just remember - this is YOUR decision and you do have the right/responsibility to discuss ALL your options with your onc - even if he/she doesn't bring them up. Remember as well that you are NOT obligated to continue treatment with the first onc that you see. There's nothing wrong with a second opinion. Know your options, discuss them with your onc and then make your decision based on all the facts. Good luck.

Jaynee

[Terry]

I'm going to do something that I don't usually do.

Look at my signature. Part of it is missing because there isn't enough room. I was diagnosed 7/3/07 stage TWO, TWO!!!!! I begged for chemo after my surgery. I had them take it to the tumor board and they still wouldn't give me mop up chemo. Now back then that was not the standard of care for stage 2 so they were only doing what they thought was right, but maybe, just maybe if I would have had some chemo I wouldn't be dying from this disease today. I wouldn't have it in nodes in my chest, I wouldn't have had to have had part of one lung removed, I wouldn't now have it in both lungs, in the trachea AND nose of all places, and it's all metastatic colorectal cancer. Do the damn chemo. No one says you have to be happy about it, no one is, but it might not be as bad as you think AND they may only want to give you XELODA which is a pill form of chemo and fairly tolerable. So don't get to upset yet, wait. Even if they give you the pump of 5FU that's tolerable, folfox for a few treatments, that's tolerable. I've done fine on 2 different rounds, this is the first one I've had trouble with.

I'm not trying to be a hard ass, I really am not, I just want you to do the best possible thing you can for yourself and to make sure if at all possible being early stage you don't go through what I have.

My prayers are with you!
Terry

[RixInPhx]

Lots of good information here for you, Broken.

Everybody is highly daunted by the prospect of chemo when it's first presented to them.
It's like a milestone that nobody wants to contemplate, much less embark upon.

Some regimens can be extremely gruelling to some people, and these are the ones that have given chemo such a negative reputation.
And in our culture, especially the regimens that cause hair loss in women, their hair being so much a part of their identity.
Not that men are any less vain; we've just had baldies like Yul Brenner and Charles Barkley as macho role models.

Anyhow, the chemo regimens for CRC are rougher on the body's performance than on appearance; that's just the way things have progressed on the pharmaceutical path.

As others have mentioned, Xeloda pills (taken at breakfast and dinner) have specific side-effects, and it is easily doable:
* Overall fatigue and weakness, reducing one's daily activities by 10-20% (my own estimate, no clinical evidence).
* Constipation/diarrhea/nausea, well-controlled in most patients by OTC and Rx meds.
* Hand-foot syndrome, where the skin on the palms and soles becomes raw; this can be aided by gloves, socks, medications, and topical lotions.
Some patients develop thinning hair, but complete hairloss from Xeloda is extremely rare.
There's nothing ot prevent you from ceasing the treatment at any time, or adjusting the dosage with your onc's concurrence if the side-effects are too strong.

In many ways, chemo for a Stage 2 CRC patient isn't much more challenging than a diabetic who must take insulin, or an arthritis patient with special meds to ease their pain.

Please listen to Terry's tale: You must make the decision and live with it.
Would you feel better in a year knowing that you've done all you can to slap ths beast into the next universe, or kick yourself if it returns and you had not done chemo?

Sorry you've qualified to join our club, and I wish you the best in your decision-making and treatment.
-Rick

[Brocken]

Thank you so much everyone for your responses. You guys have no idea how much better I feel. Terry, I am soo sorry for what you are going through. I do not think you were being a hard ass. I need smacked upside the head every now and then. This is such a scary thing but I will make it. I am not really scared of losing my hair. There are cool wigs out there. I am more scared of feeling like crap and not being able to be 100% me. If that makes sense. i wear a lot of hats.. I am a mom, teacher, and I help take care of my mom.. I do not like to feel sick at all.. You guys have helped me snap out of it. I am lucky in that my husband has been with me throughout every appointment and is a second set of ears and eyes when it comes to asking questions. I tend to go into shock and not hear certain things. Then have questions later..
Thank you guys so much..

[esk2poo]

Brocken,
You have been given great advice especially from Terry. I see you do have a lot going on personally, that being said, whenever anyone offers you help, swallow your pride and take it no matter how small.when I did not need something at that minute, I told them that I will hold that offer in my pocket for the future. People do want to help buT may not know what to do. Tell them what you need, they don't read minds. Yes, chemo sucks, but you will adjust to it and get through it. You cannot teach, be a mom, or be a caregiver if you are not here.
Prayers to you and your family.
Allen

[soccermom]

I too am a stage 2a. When my onc strongly suggested the chemo I also freaked out. I just want to say while it is not pleasant in any way, it is not as bad as I thought it would be. I think I feel better knowing that I have done everything I could to make sure that I will hopefully be here for my kids and that is what is getting me through this. Best of Luck to you.

[Jimswife]

You don't usually lose your hair with Colon cancer drugs ( 5fu / oxi ) my husband hasn't and I don't know of many other that that have ? He actually looks no different . I would go with the chemo 150 percent , I wouldn't feel comfortable not doing it I don't think if I was in your position .

[RixInPhx]

You don't usually lose your hair with Colon cancer drugs ( 5fu / oxi ) my husband hasn't and I don't know of many other that that have?

I have, from Irinotecan; most do on this drug, it just does that. :shrug:

[Jimswife]

Ah I see rix , I didnt know that . I don't think folfox causes hair loss generally though does it ? Wouldn't that be what the opening poster would be having as stage 2 adjuvant chemo ?