Colon Cancer Support Group

Colorectal cancer, also called colon cancer or bowel cancer, includes cancerous growths in the colon, rectum and appendix. Many colorectal cancers are thought to arise from mushroom-like growths that are usually benign, but some may develop into cancer over time. The majority of the time, the diagnosis of localized colon cancer is through colonoscopy.

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New here and have questions

I'm 35 and have been diagnosed stage IIIa rectal cancer. They said it was small. I had surgery with no chemo or radiation before hand because they could not see any lymph nodes on CT or endoscopic ultrasound. I had surgery 10 days ago and got the results back that one lymph node out of 25 had cancer in it. So... they tell me I'll need radiation and chemotherapy. Radiation scares me especially after going through the surgery. Can anyone tell me if skipping the radiation is an option? I am trying to get all of the information I can before I meet the oncologists next week.

I also am reading about xeloda... I would so much rather take a pill than have a port or PICC line. And oxaliplatin scares me to death too, can I avoid taking that?

Thanks for any information and thanks for being here and sharing your stories.

Replies

markarina
markarina

Mine started in my appendix and involved one lymph node, radiation is normally targeted rather than blanket coverage so unless they can see more cancer then I don't see the need for radiation but I am not a doctor, best bet is to ask what they are targeting with the radiation and why you need it.

In the UK xeloda is generally given as standard rather than an infusion, so no harm in asking, also ask why they would rather use a port or a PICC line instead of tablets ..... one reason not to is increased risk of infection.

Oxaliplatin scares most people mainly because you only hear negative experiences never positive experiences with all things how one person reacts to a treatment can be completely different from how another person reacts some people have very few problems with Oxi others have lots of problems, the main issue with Oxi is that you effectively get heavy metal poisoning from the platinum. Again ask your onc what the benefit of having the Oxi is.

The best thing you can do is WRITE down a list of questions you want answering, if you don't you will forget something because of the stress and emotional turmoil you will be going through during the discussion.

Do the research so you can ask the informed questions, but remember what you find on the internet is not always the gospel truth, but also Doctor's are fallible and don't know everything, like everybody they will generally do whatever is easiest.

The last word of wisdom is that remember that you are only one out of possibly thousands of patients that a doctor sees don't assume he knows your case intimately, assume that he has not read your notes since the last time he saw you and that he only read them a couple of minutes before he sees you and at best only skimmed through them.
deleted_user
deleted_user

I am 73 y.o and have been diagnosed Stage3 of colorectal cancer. I had resection done last Dec and started a chemotherapy on 14 Feb. The pathology test showed 2 lymph nodes positive. Without any tests like CT, MRI and Bone scan, a radiologist right away recommended radiation, then oncologist Folflox Regimen. I was terrified hearing that and had no any reasonable question as I have never been interested in chemo therapy. After getting some knowledge on internet and asking questions, I've found out that there are some other options eqaual or better to the traditional Folfllox regimen, a very expensive / a big buck for farmaceutical co.
Just a bit over 10 years ago a new treatment was recommended, in Europe and approved in Canada. In USA, oncologist prefer to go the easiest way and administer right away Folflox intravenous regimen, a very aggressive therapy particularly for the aged patient.
The therapy is by taking pills XELODA / capecitabine / at home with only 8 visits to a hospital. The daily dose is worked out depending on your health condition, the age, and the size of your body in m3.
I am on that kind of therapy taking 1500 mlg in the morning and another doze of 1500 mlg in the evening. One has to be very disciplined to take the pilss as prescribed. Pills are taken over 2 weeks and the third week is free / off the pills /. Those 3 weeks consitute ONE cycle. I am at the moment in half way of the 6 th cycle and am so lucky not having a major side effect. It is very important to maintain your good diet and to be physically active / in moderation/. Despite of my age, I am still very physically, almost in excellent condition.
Do your homework and be more careful with information on internet. You have to make a judgement which one is a reliable information without promoting drug or an instant cures. You can go to a web site where you can find about a question to ask. The best is to find out from different sources on internet an answer to your questions, so you will be able to confront the answers given to your by your oncologist.
If you wish, I can send you a good web sites re Xeloda/capecitabine/ as a sole therapy for colon cancer.
libra1313
deleted_user
deleted_user

I have a friend a surgeon who said that if he were in my situation he would opt treatment by Xeloda.
deleted_user
deleted_user

Libra, I'd love those links. Please message them to me. Thanks.
deleted_user
deleted_user

http://theoncologist.alphamedpress.org/content/11/4/325.full
http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/000316/human_med_001157.jsp&jsenabled=true
http://stage-3-colon.cancertreatment.net/
http://www.cancer.org/Treatment/TreatmentsandSideEffects/TreatmentTypes/Chemotherapy/ChemotherapyPrinciplesAnIn-depthDiscussionoftheTechniquesanditsRoleinTreatment/chemotherapy-principles-questions-to-ask-about-chemo
deleted_user
deleted_user

Venia - Did you decide to have an oral therapy - Xeloda / capecitabine / ?.
Did you ask you oncologist/radiologist , what radiation would target ?
The tumor has been resected and only one lymph node positive out of 25 which is pretty good ratio.
deleted_user
deleted_user

I'm going to do 5FU and oxaliplatin... and radiation also. I'm not excited about it but have a5 year old who needs his mom and I feel the oncologists really care and are doing what is best. I have been very anxious and slightly freaking out but am strong and feeling so much better after the surgery.
deleted_user
deleted_user

Hi Venia - You are young lady and with your positive attitude towards your therapy you might not experience side effects as much as older patients due to decreasing immune system with the age.
Did you make a suggestion to your oncoloogist to administer Xeloda as a therapy? I wonder what was his explanation to support his decision to administer a traditional regimen. Most of oncologist in the States prefer to administer that traditional therapy as they are scared to divert from the routine treatments.
Try to suggest to you oncologist to postpone radiation as the 5FU in combination with Oxiplatin is a pretty aggressive treatment. You might not experience side effects as badly as some patients being on the same regimen. I have been on Xeloda for 18 weeks and didn't experienced any major side effects which some patients do and terminate their treatment just after a few weeks of the therapy.
Venia, I wish you all the best and will hold you in my prayers.
mykids2
mykids2

Hi venia, if you start taking the oxali, then the port is the way to go. I didn't want to research anything when I first started, cos I was afraid to read all negative things about chemo. Now that I am 8 treatments along with stage 3b cc, questions have come up about switching to xeloda and discontinuing oxali. And my onc thinks its best to stick with it, since I'm toleratiing it ok. IMO, as most here, would rather take the xeloda than toting the 5fu pump for 46hrs. But I would feel safer having the pump around a 5 yr old than pills, but that's just me feeling clumsy and forgetful (chemo brain) these days:). Glad you found this site. Everyone here is a godsend (is that the right word)?
deleted_user
deleted_user

Hi....I am also stage 3. My tumor was a pretty good size but I did the radiation before surgery.....which was a piece of cake.....and the tumor shrunk to almost nothing! The worst part of the radiation (about 20 min a day) was dropping my pants everyday in front of a bunch of people. One day I went in for radiation and one of the techs was a 20-something young man.....a female tech saw the look on my face and asked if I would prefer all women. I said yes. It was then that I realized I have the final say in anything that goes on during treatment......so you asked if you can refuse something......YES you can!

I chose NOT to take the oxaliplatin. I'm a single working parent. I had no time for the horrible side effects. The oncologist told me that there is no evidence that this drug will prolong my life OR prevent reoccurance. I have no idea why they even offer it? For years people have been successfully treated with just the 5FU (Xeloda is a form of this) so I opted to only take the 5FU. I just finished treatment.....it went very well......and now I'm waiting for my reconnect surgery.

The Xeloda seems like it would be a really good choice for you. Just make sure that they explain the dosage correctly.....and that you take it just as they say.

Remember.....you have the final say in everything. Best of luck to you!!!
deleted_user
deleted_user

Hi Suzy, it is great to hear that you are fully recovered by taking Xeloda. As I've mentioned before, I am on Xeloda, initially on 1800mlg in the morning and 1800mlg in the evening. Due to some side effects /grade2/ , my doctore decreased the daily dose to 3000mlg.
At the moment I am in a half way of the 7th cycle. I do experience a very minor side effects related only to my hands and occasional feet swell. Otherwise I feel great and physically as fit as I was in my prime time of my life. I was assurred by my doctor that I wouldn't nieed a radiation which I would refuse anyway taking into account my age /73/.
Coukld you tell me what was your daily dose of Xeloda and how many cycles did you have to go through. I am 2 weeks on pills and 1 week off the pills./ those three weeks constitutes one cycle/. Usually the entire Xeloda- capecitabine therapy is administered for 8 cycles. I worry that my treatment might not worked as I didn't experienced any major side effects after a few initial cycles.
My CEA last reading was 1.6 below 3 as a normal range.My all blood test were normal throughout my so far therapy.
With my best wishes to a successful reconnection,
Ed