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And so it begins . . .

Posts: 26
Joined: Sep 2012

Hello . . . I am a newbie and my hubby was diagnosed with colorectal adenocarcinoma three weeks ago following a colonoscopy. A grape-sized mass was discovered, but no polyps or other problems. He has since had a 'whole body' PET CT scan, which indicated that he does not have any other areas involved. He's also had an EUS, which staged him at uT3 uN1 with one or more abnormal (but not enlarged) lymph nodes in the same area. He is scheduled to begin chemo (oral Xeloda) and radiation treatments to be given five days a week for five weeks. This will be followed by surgery in about two months. Further chemo/rad treatments will depend on what they find during surgery.

This was quite a shock - no family history of cancer, doesn't smoke or drink, gets moderate exercise, could lose maybe 10 lbs. but by no means obese - no warning signs until he began having diarrhea one day. Got him to our doctor and things have been rather like trying to ride a tornado ever since. Everything - new doctors' visits and tests - has progressed quickly, which we greatly appreciate. (I did mention to each doctor that I can become quite a pain in the neck if I think things are moving too slowly.) It is all so overwhelming!

He has a fantastic attitude. Never been a worrier - believes it certainly wouldn't help and might hinder recovery. I feel like I have been and will be 'holding my breath' - always waiting for the next test result and then how will his treatment affect him and then what will surgery find.

I'm not even sure what to ask . . . but please know that all of you have my prayers.

steveandnat's picture
Posts: 887
Joined: Sep 2011

Welcome to a great group of other colon patients and caregivers. The one thing that makes me feel good is it is early stage. I would think the doc would try to do surgery sooner but maybe they want to shrink the tumor more and control with chemo. Also it is a big plus your husband is in good health otherwise. I think that really helps. Another big plus is his good attitude because it is possible during chemo there may be tough days. Overall I have a great feeling for your husbands outcome. I will say a special prayer for you and family. Jeff

Posts: 26
Joined: Sep 2012

Thanks, Jeff! Doing the chemo/rad treatment before surgery is kind of new, I believe. You're right - the idea is to shrink the tumor and stop the cancer cells from spreading. We are told it significantly reduces the chances of the cancer coming back.

We really like and have faith in our surgeon - he saved my man's life once already about five years ago when he needed emergency surgery for his appendix. The day he gave us this diagnosis (he did the colonoscopy), he had a plan of action all ready and within 24 hours we had appointments with an oncologist, a radiation oncologist, and the PET CT scan scheduled - his office took care of everything. Definitely impressed with the radiation oncologist - the oncologist is new (only been practicing for a month), but so far, he seems good also. (I am very doctor-phobic . . .)

One piece of advice we got from another cancer survivor is to get all of the test results on a cd, in case we want to get a second opinion at some point. All of our doctors are local, but part of a cancer center network connected to a large cancer treatment center about an hour from us.

Wondering if anyone else here has taken Xeloda?

herdizziness's picture
Posts: 3642
Joined: Apr 2010

Several of us have done Xeloda, I just started taking it again. Xeloda was a very easy chemo for me, just have to watch if he gets diarrhea from it, in which case it is good to have immodium ad on the shelf. Other then that I didn't have problems with it. Make sure he eats breakfast before taking the morning dose and something to eat before taking the evening dose so he won't have stomach problems from it, but many peoples hands get sensitive and cracked, so they will have suggestions of different creams that they have tried and found to work.
Also quite a few did chemo first and surgery second, the idea being it's better to shrink and get rid of any little cells floating around, also why they do chemo after surgery, in case any little cancer cells are hanging around then too.
A second opinion is always good, just be a tad bit careful of cancer treatment center's as they are really about profit for the most part.
And yes, a copy of the scan and report on cd is always good to get, I never thought about it until someone here on the board suggested it, so your other cancer survivor was spot on about getting a copy of the cd.
Glad your husband is in capable hands, and it seems like you are really doing well through this, glad it was caught early as well.
My best to your family,
Winter Marie

Posts: 26
Joined: Sep 2012

Hi, Winter Marie . . .

The one that's near us is not part of the chain that advertises on tv - I've already been advised to look carefully at them. None of their centers are near us anyway.

We have a young friend whose hubby had severe stomach cancer and she told us that eating a good breakfast before chemo and lunch right after a treatment kept him from getting severe nausea/vomiting. Hoping Xeloda is kind to mine!

We are trying to keep everything positive and upbeat. Also have slightly cracked senses of humor, which helps. Really appreciating all the advice and support!

P.S. "Winter" is my favorite time of year and I have inner ear issues causing balance problems - your 'names' suit me!

herdizziness's picture
Posts: 3642
Joined: Apr 2010

I guess you could see I was worried about you rushing to a cancer for profit place, I've gotten my surgeries done at Stanford, love their cancer specialty in their cancer center, they've been good to me, I still use my onc in Santa Cruz because to me he is GREAT, he actually referred me to another onc at Stanford so I could get my surgery there. Trust and rapport with your onc I found is very important, and if you have that, that's half the battle. I'm glad you had a good doctor!!!
Winter Marie

Lovekitties's picture
Posts: 3270
Joined: Jan 2010

Sorry about your husband's diagnosis, but this is a great place to exchange information and to get emotional support.

It sounds as if you are confident in the medical team and that is very important. The advise you got about getting test results on CD was very good. Hopefully you won't need them, but having copies can save a lot of time if you need to make a change.

Others will chime in to give you their experience with the specific treatments you mention.

Wishing your hubby the best as he begins treatments.

Marie who loves kitties

Maxiecat's picture
Posts: 544
Joined: Jul 2012

Welcome to our little group. It sound like you have a good plan in place for his treatment and that you have good doctors. This group is a wealth of information and support.


Posts: 26
Joined: Sep 2012

Thanks for the welcome, 'kitties' and 'cat'. :)

son of hal
Posts: 117
Joined: Mar 2011

Hello Heart- Your husbands situation sounds very similar to my own aside from the history of family cancers. First thing I will tell you is to slow down and breathe. This type of cancer (in early stages) is by no means a race against time. CC progresses very slowly and you have time to make your decisions on treatments. Your doctors recomendations are identical to mine as well as many others. Some do prefer surgery first but studies show better results with chemo/radiation first. You don't mention location or stage. Are they certain of the N1? The T3 N1 would follow a stage I,II or III but according to your description he could be a stage II which is what I was. I had several enlarged lymph nodes that also lit up in PET scan but after two biopsies, none were found to be cancerous so I was a Stage II-T3-N0. I will tell you that if the surgery will require removing a section of colon and a temporary bag, studies show better results going with a specialist over a general surgeon. Sounds like you two have a great attitude and that's important. I'm approaching my third year at this and after chemo/rad. and four surgeries things are pretty close to normal. I did the Xeloda also and had no lasting side effects. I did have a complete response after my initial treatments and put off the surgery but had a return of the tumor 9 months later so I finnaly went with the surgery. You will find a wealth of information here just ask questions. Also, search old posts for info but please, check the dates on old posts before responding to them since some are pretty old and the people posting may no longer be on here, or with us. You will likely read some sad stories here and the spotlight is shined on our mortality but there are great stories of success and hope and faith here that you wont find anywhere else. Good luck, God bless.
Take care, CJ
PS. a personal suggestion of mine would be to start focussing on health and nutrition since they are both important to battle any disease. Ask the docs to check your husbands vitamin levels (especially D3)since that is linked with CC. Anti-oxidants are beneficial and Vitamin C is helpfull as well.
By the way, my wife thought I was about 15 pounds overweight. After nine months of healthy living and SIXTY pounds later, I reached my ideal weight and we both realized the truth.

Posts: 26
Joined: Sep 2012

Thanks for the advice, CJ. J's initial bloodwork came back excellent, but not sure they checked actual vitamin levels, so will ask about that. We haven't been told any stage other than the uT3 uN1, which was written in the EUS report? Not sure what was meant by lymph node(s) that appeared 'abnormal, but not enlarged' - more questions to ask. Why is it so hard to think of questions at the time???

We got started on his nutrition last week. Our daughter knows someone who works in a nursing home and whenever one of their residents gets a cancer diagnosis, they immediately start them on Ensure and Carnation Instant Breakfast. Evidently these boost the immune system and help fight weight loss once treatment begins. He's gonna get tired of chocolate, but it's the only flavor he'll drink!

As far as health, he is healthy, but we had to miss two visits from our 3-year-old grandson last week/weekend b/c the little guy has a virus. :( His fever was gone and we had dinner planned for Friday night. Temperature rose again late that afternoon. He kept telling his mommy to 'take it again' . . . "It was a mistake!"

I bet you are 'spot on' about the weight thing . . .


Annabelle41415's picture
Posts: 4846
Joined: Feb 2009

This is a place where you really don't want to be but you will find so much hope and encouragement here. What your husband's protocal is sounds standard as I've done the Xeloda and radiation before surgery too. My tumor was the size of a nickle and when done with the Xeloda and radiation it was the size of a ball point pen tip. The combination of both was extreme in reducing the size of the tumor and then had surgery to remove it. Wishing you both well and please feel free to come here with all your questions as there will be many as you have more tests and appointments.


Posts: 26
Joined: Sep 2012

Yes, you are so right about not wanting to be here - took me several days after his diagnosis to get myself to do this. (He won't ever be online b/c his line of work is computers and he avoids them when he's not at work.) I do all the research and share some of what I find with him.

I was told his tumor/mass was the size of a small grape. The surgeon removed most of it during the colonoscopy.

k44454445's picture
Posts: 494
Joined: Jul 2012

welcome. this is a great place to come to for questions you have as so many people on here are wise in info & also on overall view of situations. good luck & stay strong!

Posts: 26
Joined: Sep 2012

It sure helps us feel like we aren't facing something totally 'in the dark'. But wish this "C" thing wasn't so common . . . We have been a part of Relay for Life in our area for years - too many friends have faced one form or another.

Thanks to you and everyone else for the encouragement!

PhillieG's picture
Posts: 4837
Joined: May 2005

but too bad you're here for the reason you are...
That being said, it's not unusual to do chemo/radiation before surgery. I think it's better to approach it that way when possible mainly because the body is stronger prior to surgery so it can handle the chemo better. I haven't had to do radiation treatments but I started with six months of chemo (FOLFOX w/Avastin) which shrunk my liver tumors so I could be operated on. Without the Avastin, I likely would not have had the good results I've had. Avastin was one of the new group of chemo/drugs that target certain attributes of cells. It's purpose was to starve the tumor by cutting the blood supply to it. It did exactly what it was designed to do.

Personally, I have found that attitude is everything when dealing with cancer. One can either (try to) keep a positive one and deal with things as they come up or one can be a victim. I've seen that usually one's overall personality and general outlook on life comes out when faced with any crisis. I'm happy to hear your husband has a fantastic attitude, it will serve him well.

Cancer is something one has to take a step at a time I've found. Always hope for the best but be ready for whatever's thrown your way.
I hope you find this site to be helpful. You'll find many points of view here and opinions on how to deal with cancer. There's no one size fits all when it comes to cancer. We are all unique.
Welcome and feel free to ask questions...

Posts: 26
Joined: Sep 2012

Thanks, phil! I read about starving the blood supply to the cancer cells (anti-angiogenesis sticks in my mind). There's just so much to learn and so many different types.

J starts chemo (Xeloda) and radiation treatments tomorrow. They had everything they needed sooner than expected, so changed the start date. Why am I so anxious (nervous) about this?


Dyanclark's picture
Posts: 296
Joined: Apr 2012

This is the same road my husband has been on. They found tumor in in 2008. Surgery & radiation was the treatment with the chemo pill. He had a remission of 3 1/2 years. He is in remission again after a recurrence this year.
And so it begins.

Posts: 26
Joined: Sep 2012

Did he have the chemo & radiation before his surgery in 2008 or after or both? This disease is so bizarre. We've talked to people with the same type & stage who had this 15 years ago and it hasn't returned and others who just can't get rid of it for more than a few months. We'll be praying for your husband and you.

wts's picture
Posts: 40
Joined: Jun 2012

Hey.. I know how you guys feel. I was diagnosed in June. I have finished up radiation and chemo and am scheduled for surgery next week. It is a whirlwind for sure. I'll be praying for you guys. Just try to stay possitive.

thingy45's picture
Posts: 632
Joined: Apr 2011

Welcome Heart,
we all have a story to tell and we are all here to help when necessary. We are the CSN family, we cry, we laugh we argue, but on the end we are there for another.
I started out with N1 T3 M0,stage IIIb, I had a left Hemicolectomy, 10 Lbs of cancer the size of a basebal, removed plus 34 cm of colon, plus 4 cm by rectum.
I decided against chemo and Radiation, my personal choice, and so far I am NED (No Evidence of Decease)
Many on this board are very knowledgable, so ask away when the question come.
You are in my prayers. Take it all one day at a time, easier to cope with then looking for the long run.
Hugs, Marian

Posts: 3
Joined: Sep 2012

So much to learn! mY daughter Alice, (42, devel dis.) has colon cancer. Surgery succesful a couple of weeks ago. About to start on Fluorouracil and leucovorin intravenously for 6 months. Do not feel comfortable with the Onc. since he was not open to questions, never heard of Turmeric, made a joke when I asked him about a healthful diet. So looking for a second onc. even though the first one has already "ordered" the chemo meds.... and wondering how to handle the situation.... not a good way to start, I am sure, but i feel getting an oncologist that we feel comfortable is imperative. Any suggestions?

thxmiker's picture
Posts: 1282
Joined: Oct 2010

Just call other Oncologists in your area. Ask them if they will accept your insurance. (Medicaid/care)

Almost all of the Oncologists that we spoke to told us not to worry about the insurance but to worry about getting healthy. I have top notch insurance and was not worried about the expenses to much. (One is always worried about the expenses.) I would also seek out a Naturalist Doctor, there are many out there. You could use the Naturalist as your GP, and they will help you choose a healthy diet, herbs for antioxidents, etc...

There are several groups that will also help with the expenses. The Wellness Comunity is a good example. They will help you with the expenses, and find Doctors that will work with you.

Best Always, mike

Posts: 26
Joined: Sep 2012

I haven't had a chance to be on here in a while and just saw the newer posts for the first time. wts, praying your surgery went well and you are recovering speedily!! J's surgery will apparently be later in the year than we originally thought. The surgeon had told us he liked to wait a "couple of weeks" after treatments end before operating, but the radiation oncologist recommends 4-6 weeks. Reason being the cancer continues shrinking for a period of time and the more it shrinks, the better. (Of course, I do tend to take things 'literally' - surgeon could have easily meant that long.)

We are staying in good spirits - 14 chemo/rad treatments down (14 to go) and hubby is just starting to get some localized irritation and bowel issues. He's also tiring more easily, but we were told this all might happen. Nothing serious so far, for which we are truly thankful. Xeloda (the chemo pills) does not seem to bother him at all. He has not lost any weight and his CBC counts are down only slightly.

I am a bit confused about the CEA test. Hubby's count was 1.2 - I guess we expected it to be higher (not that we're complaining!!!)? Also wondered if anybody ever had any kind of tests done DURING chemo/rad to determine how well it was working? The radiation oncologist said that we wouldn't know anything much until after surgery. We know different doctors do things differently . . .

Keeping all of you in our hearts and prayers . . .


So Worried
Posts: 111
Joined: Aug 2012

Some of the above posts mentioned you doing chemo and radiation before surgery so the cancer doesn't spread. The Dr. did surgery on my husband 2 weeks after dx. I realize that all surgeons/Dr.s think differently, but now I'm worried about the spreading. He is stage 2b, right colon, 14" out and reconnect... and had an option of chemo or no chemo "after" surgery, and he is doing no chemo. I just wondered why they didn't suggest chemo or radiation before the surgery? I read above that they do it to shrink the tumor too, so maybe it's according to the size of the tumor? My husband's was 1.5 cm...the report reads. Anyway, just wondering about any thoughts you guys might have on this as when we were told about the cancer, we were in shock and didn't know AT ALL what we were doing. Thanks much

Posts: 26
Joined: Sep 2012

We are in the same boat - totally in shock and questioning if we are doing the 'right' thing. The surgeon that found the growth during a colonoscopy has operated on my husband before (an emergency appendectomy - his second one, believe it or not) and we have a great deal of faith in him. When he told us the growth was adenocarcinoma, he already had a tentative plan in mind that did not include the chemo/rad. His office set up all the appointments for a PET CT scan, an oncologist and a radiation oncologist to run further tests. All of the doctors communicated with each other and debated the pros and cons of doing the chemo/rad prior to surgery. What pushed them to do it was the result from yet another test - an EUS (ultrasound) that indicated there MIGHT be involvement of two lymph nodes.

I tried to research like mad b/c it all happened so quickly, but it's pretty overwhelming and there's so much scary stuff out there (like you reading what we're doing and that makes you worry about your fella's treatment). It often seems like one site says one thing and another says the opposite. Who do we believe - where do we go for the best answers?

That being said, I'm thinking that your husband's cancer was in an earlier stage than my husband's and your doctor felt it was early enough that surgery would do the trick without the prior treatments. The chemo/rad can cause some serious problems, so it isn't always indicated. If you know the stage of his cancer or know it was caught very early, then that probably explains the difference in treatments. You could call the doctor and tell him the question has 'come up'. See what he says. (If your fella is like mine, he doesn't ask questions - but I sure do!!)

Try not to worry ... I know that's much easier said than done! If asking me for more details on our case helps put your mind at ease, please do!

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