Colon Cancer

February 16, 2006 10:14 PM

My wife has just been diagnosed with Colon Cancer through a colonoscopy. We will be getiing a lot of professional advice over the next while. In laymen's terms, what should I know about treatment (in Montreal)?
posted by notcostello to health & fitness (15 comments total)

I don't know anything about the treatment differences, if any, between Quebec and the United States so I'll be speaking in general terms. Treatment would depend quite heavily on what stage the cancer is. In any case, she'll almost certainly require surgery to remove part of her colon. If the cancer has spread to lymph nodes the doctors will almost certainly recommend chemotherapy as well as surgery. Obviously, your expectations about what treatment would be like would depend heavily on whether chemotherapy is recommended or not.

A surgical resection of the colon in early colon cancer usually doesn't have many long term side effects. The part of the colon with the tumor is surgically is removed and the colon is reattached. All surgeries have risks, but this is a fairly common surgery and surgeons have a lot of experience with it. I believe there has been some work recently started on using laparoscopic techniques to do resections of the colon. Laparoscopic surgeries do NOT require a big incision of the abdomen and are generally much easier on the patient, but I don't know how advanced this work is or whether the long term success rate is the same as for open surgery. That would be something you'd want information from your doctor about if it were an option in your area.

Chemotherapy is a whole 'nother thing but I won't go into that unless you have reason to believe it would be an issue in your family's case.

Anyway, in general, early stage colon cancer has a pretty good success rate with treatment without a lot of long term side effects to the surgery. But I'm sure you want to talk to your doctor about your wife's case because statistical information is probably not much comfort on a personal leve.

Oh... on preview, depression is pretty common with people in this situation so you probably want to keep an eye out for that. Some people do fine, others do well with support groups or therapy. That's an individual thing.
posted by Justinian at 10:38 PM on February 16, 2006

So very sorry to hear that, notcostello. Generally speaking, the next step would be to stage the cancer, to see if or how far it has spread. Once it has been staged, that determines treatment--you don't want to give more treatment than needed for how severe a cancer is, but you don't want to obviously give too little, either. These guidelines may be too technical, but there are a number of flowcharts that physicians and surgeons refer to for treatment plans based on staging at the NCCN.
posted by gramcracker at 10:40 PM on February 16, 2006

Obviously it depends how far and bad, etc. But if you want to hear the experiences of others, ours was not too bad. My partner had a tumour surgically removed from the transverse colon in 2003 and that was that: it appears they managed to cut out the whole tumour, and as far as we can tell it was a scary incident in the past. AFAIK, this is the preferred route for this sort of thing - catch it early, cut it out.

The practicalities are that the surgery was fairly major - well it seemed so to us. Big scar. Morphine was apparently OK when it was going on but awful when it was removed. For me, that was the worst part, watching someone effectively cold-turkey in his state (vomiting after abdominal surgery? not fun). Then there's a lot of Nil By Mouth, waiting for a fart: the fart is some signal that it's all connected back up again. After that liquids and food are very gradually reintroduced (freshly squeezed fruit juice was most appreciated after 5 days of just sips of water). It took 10 days in hospital with 6 weeks recovery afterwards.

Now? He's fine. Runs half marathons. Drinks beer.
posted by handee at 6:09 AM on February 17, 2006

so sorry to hear it. I don't have experience with colon cancer specifically, but I was treated with chemo about 6 years ago, and wrote about it here if you are interested.

best wishes!
posted by mdn at 7:02 AM on February 17, 2006

From my brother:

Notcostello,

I asked Bondcliff to post this. I usually lurk but I can add to this conversation. Contact Bondcliff if you want my email address.

My wife just celebrated her one year anniversary of being rectal cancer free. Colon and rectal cancers are usually grouped together so much of the information I’ll provide will be applicable to your case. In late 2004, at age 43 my wife was diagnosed. First she went though six weeks of chemotherapy and radiation therapy, followed by a few weeks off. Then she had surgery. She then had two more rounds of post-surgical chemotherapy. She is pretty much back to normal now, but getting to this point was tough at times. She was lucky. The cancer was at stage one, which has a very high survival rate.

I’ll never forget the doctor calling this a “normal” cancer. But co-rectal cancer is actually very common and quite curable, especially if caught early. Your wife probably won’t have radiation treatment, unless the tumor is low enough in the colon. The typical drug for colon cancer is something called 5FU, as chemo drugs go it has relatively mild side effects. She probably won’t lose her hair, which helps a lot psychologically. There are a lot of anti-nausea drugs available, take them if needed. If 5FU doesn’t work there are a lot of other chemo drugs available.

The surgery is tough. My wife spent nine days in the hospital and several weeks at home recovering. We found out that my wife is allergic to opiates so all the good painkillers were out. She gutted though the pain and made it.

The post surgical chemo was tougher than the first round, mainly because the surgery weakens the body. She was glad when it was all over. It was a few more months before she was back to normal though.

Some general advice-

Cancer.org and cancer.gov are two excellent web sites. There is a lot of quackery around cancer treatment, don’t fall for any of it.

I noticed that doctors and nurses who work with cancer patients generally seem to be a compassionate group. Advocate on your wife’s behalf if needed. They will listen.

The sooner your wife can learn to accept a lot of poking and prodding around some intimate body parts the easier it will be. Don’t be afraid of a colostomy, they aren’t as bad as they are made out to be.

Your wife will eventually be cured but this doesn’t mean you are done. There is a lot of follow-up care, especially in the first couple years. You will know your way around the hospital very quickly.

If you can take the financial hit have your wife take a leave of absence. The hole in my bank account is a small price to pay for the comfort of knowing she didn’t have to worry about working and could recover on her terms.

Take people up on their offers of help. A hot meal cooked by someone else is a great stress reliever. I just wish someone offered to clean my house.

Keep a sense of humor. This will be a challenging year for both of you. Good luck.
posted by bondcliff at 7:46 AM on February 17, 2006 [1 favorite]

BTW - email's in the profile if you want to talk/ask any more questions.
posted by handee at 8:03 AM on February 17, 2006

My sister Laura had breast cancer a couple of years back, and here's what she learned about chemotherapy:
"List of Coping Stuff for Cancer, in random order
(perhaps one day to be organized)
1. The hair goes away in about 18 days after your first chemo. It returns as short curls within about a year after your last chemo. Eyebrows take about a year and a half. Most people are nice and try not to stare, but there are assholes in this world. They will be mean and point and laugh. Wear a wig if it makes you feel better; I wore a really short skirt and a scowl.
2. All of the hair goes away—ALL of it. You will hear “At least you don’t have to shave your legs,” more than once.
3. You will no longer have eyebrows or nose hair—which means you will get sweat in your eyes and your nose will drip. Have several soft cotton bandanas—they make great impromptu hats, and when you start to drip you will be glad to have them.
4. Wash all of your clothes and bedding in non-scented laundry detergent, without fabric softener. The laundry smells will make you sick when you are under the influence of chemo.
5. Have someone else cook you simple, soft foods, or buy them ready made at a deli. I liked to start my post chemo diet with soft, carb heavy food like mashed potatoes and pudding. Keep them in the fridge, and microwave them to warmth, but not to fragrance. Add a couple of bites of soft protein, like tofu or stewed brisket, but don’t overdo it for the first weekend after chemo. As you start to recover, you can add heavier food, like scrambled eggs.
6. Spend the three days before chemo drinking water constantly, while minimizing intake of caffeine and taking absolutely no alcohol. If your kidneys are already in “flush mode” when you get to chemo, you’ll be better able to get the chemicals out of your body once they’ve done their job.
7. Things that you like will stink when you are under the influence of chemo. I couldn’t stand the smell of coffee or wine—they seemed to be reduced to the smell of their chemical contents. I switched to drinking Irish breakfast tea in the morning.
8. When you hair falls out, your scalp feels very tender. It’s good to have those seamless stocking caps when you go to sleep—they keep your head warm, and they ease the friction between your head and your pillow.
9. Get one or two resources on the disease, and read them thoroughly. DO NOT spend excessive time on the internet researching your disease—if you need to know what’s out there, ask someone else to look for you. Non-scholarly sources are likely to contain bad information, and online scholarly forums are written for researchers for whom your disease is a sort of a challenge. Reading their statistics on and assessments of your treatment is a good way to get the shit scared out of you. If you are concerned that you are not getting appropriate care, get a second professional opinion.
10. Ensure is surprisingly tasty. Drink it over ice, and use a bendy straw so you don’t have to smell it.

Stuff to have around:
Bendy straw
Cold pack
Heating pad
Hemmorhoid suppositories
Yeast infection treatments
Stool softeners (don’t use fiber laxatives SEE: hemmorhoid)
Tylenol
Unscented laundry detergent
Tea
Ensure
Tapioca
Potato ricer
Muscle relaxing bath
Cotton nightclothes (absorbent)
Paper fan
Pants and skirts with elastic waistbands.
Anti-itch spray
Teething gel (for mouth sores)
Extra soft toothbrushes
Books on tape
Crock pot for cooking brisket or pot roast outside, away from your nose.
Microwave oven
Lotion, either unscented, or something that isn’t supposed to smell like food, such as lavender or juniper. This is a place to really treat yourself—get the good stuff.
Good sunglasses.
Any makeup that makes you happy

Stuff to get rid of or hide:
Shampoo
Brushes
Hair doodads"

My sister survived six brutal months of chemo, and my mom just finished a dose dense cycle of about three months. If given the choice, I'd say go with dose-dense chemo. My mom had just as intense chemotherapy, but didn't lose her eyebrows or eyelashes because of the shorter duration, and has been in the past month beginning to get back to her real life. The downside has been that my mom has been much more prone to infection, but neulasta and neupogin have helped her to fight that. My prayers are with you and your wife, notcostello. Stay tough.
posted by Sara Anne at 8:21 AM on February 17, 2006 [2 favorites]

Excellent counsel above, from people who've lived it. I'll add something I learned (thankfully) second-hand. A good friend helped her mother through an extended treatment for colon cancer; she said if she could offer one tip to someone embarking on something similar, it would be: Make friends with the floor nurses. While the doctors were always attentive, supportive, and willing to answer questions, they were also pretty inaccessible. The floor nurses are there all the time and will be able to answer most of your questions, and a good connection with him or her can make the difference between getting chips of ice quickly, or not. It shouldn't matter, but it does. (Your experience may be different; this was at Sloan-Kettering in NY, which is a huge teaching hospital.)

I fervently second bondcliff on this: "Take people up on their offers of help. A hot meal cooked by someone else is a great stress reliever. I just wish someone offered to clean my house."

Whatever your hesitations about accepting help, get over them. Everyone who loves you will be desperate for something truly helpful to do. The help you accept is not an imposition on them; it's whatever imposition's polar opposite is.

In fact, I'll go further than bondcliff: Ask for what you need. People often say, "If there's anything I can do..." without offering anything specific -- not because they're insincere, but because they don't know what to offer. Enlist their help. If your house needs cleaning, ask your tidiest friend. If your dog needs walking (or fostering), ask a friend who loves the pooch. Again, none of this is an imposition. Your friends will be truly grateful for a chance to help.

Very best wishes to both of you.
posted by vetiver at 8:23 AM on February 17, 2006

One more thing: never stop exercising. Even when you feel lousiest you should get up and take a short walk.
posted by Sara Anne at 8:28 AM on February 17, 2006

Firstly I just wanted to say that when found early, colon cancer is highly treatable. I don't know much about the later stages, but that early detection factoid is a nice hopeful note.

You might have a look at the NCCN-ACS patient treatment guidelines for colon cancer. They're handy because they give you background and then lay out decision trees for you. If this, then that, and so on. And there are places to take notes, so you can have them right there in hand as you talk to the doctors. You can order them in print from ACS or get them online from either. ACS has them in pdf. NCCN has html or pdf.

The patient treatment guidelines were actually adapted by ACS from NCCN's guidelines for physicians. I don't know if the physicians' guides would be helpful for patients (never looked at them), but I always like to get in and snoop around stuff like that just to see if there's stuff they're only not telling me because they think I wouldn't understand. I'm smart, damn it! I want to know! Anyway, if you're interested, check it out. Note that they have a separate physician's guide for rectal, whereas the patient one is for both colon & rectal. Not sure what your wife's exact condition is but I guess there's a difference. Maybe you should just tool around their whole site. You might see other stuff of interest, such as supportive care, pain, fatigue, nausea, distress, etc.

ACS also has lots of good stuff on their site. There's a treatment decision tool, there are various degrees of narrative info, from simpler to more detailed, as the site as a whole has coping advice, books, links to support networks, links to other info, etc.

One thing you might want to read up on his how to be a good supporter and caregiver. It's not like falling out of bed. It's good to learn about how cancer diagnose-ees feel and think and how you can best be there for them.

I think ACS is a good place to start. You can also call them 24/7 at 800-ACS-2345. The operators are trained to help people who are just getting started or who have specific issues from all across the cancer spectrum. They can answer questions, help you figure out where to start, send you materials, direct you to services and resources, etc.

If you're in Canada, you might also try the Candian Cancer Society, especially where local services and resources and health facilities are concerned.

Hang in there. Stay informed. Lots of people go through this, so while it can seem bewildering and while there is indeed lots to learn, these aren't uncharted waters.
posted by kookoobirdz at 8:39 AM on February 17, 2006

One more "one more thing": on the advice of her surgeon my mother started taking arnica, five little homeopathic pills three times a day, from the time she first met with the surgeon until about two weeks after the surgery. The surgeon, a very reputable doctor, swears by arnica for reducing post surgical bruising and accelerating healing. Whether or not it was a placebo, I can't say, but my mother's healing from a bilateral mastectomy was remarkably quick, and comparing her bruising with pictures available of others, I have to say she looked much better. Ask your doctor about this. Can't hurt.
posted by Sara Anne at 9:44 AM on February 17, 2006

You can find some good info here:

Colon Cancer in Encyclopedia of Cancer
posted by chaz at 10:53 AM on February 17, 2006

If your wife is being treated at the Royal Vic/Montreal General, she should get in contact with Cedars' CanSupport/Faire Face. Gwendolyn Nacos is still in charge of the project as far as I know, and she will be able put your wife in contact with colo-rectal support groups in Montreal (if your wife would like that). CanSupport (located in the Royal Vic's oncology department) also has a library you can make use of.

Jewish General's Hope and Cope is another great resource for cancer support, and I think they even recently opened, or are in the process of opening an off-site support center for cancer patients and families. Kind of like what Gilda's Club was before it shut down a year and a half ago.

As for surgeons and oncologists in Montreal, many of the specialists work between the MUHC hospitals and the Jewish General (my surgeon headed departments at both MUHC hospitals; my geneticist worked at both JGH and Montreal Gen; my radiologist worked at JGH and Royal Vic . . .) and you may find yourself hopping from hospital to hospital, so get copies of all your wife's medical records -- blood tests, pathology, etc -- and keep them in a binder at home. It will make your wife's life a lot easier if she finds herself having to go to a different hospital for tests -- paperwork is never where it should be when it should be.

I don't know much about the CHUM hospitals, but I've heard some good things about them. I've heard mixed things about Lakeshore General -- your wife would be better off at one of the teaching hospitals. One of the best ways to find out which oncologists/surgeons you want invovled in your wife's treatment is to talk to other patients and see how they were treated. Also ask your GP who they recommend as best in the city.

One last thing -- oncology nurses are some of the best people in the world. They will take good care of your wife.

Email me (in profile) if you have any specific questions about Jewish General/MUHC hospitals.

Best of luck.
posted by Felicity Rilke at 11:44 AM on February 17, 2006

Thank you all so very much for the advice and references. I will go over all of it.

The comments about accepting help are very true. It has perked up my wife just to see how many people have offered assistance.

The Arnica comment is interesting as I just started working for the company that makes it. I had heard about its ability to reduce bruising.

So far the news is that, before they had done the colonoscopy, they had done an ultrasound of her liver and a gastroscopy and found nothing.

Of course only the surgery will tell us for sure. It is scheduled for Wednesday. If I can, I'll let you all know what happened.

Thank you all again.
posted by notcostello at 3:04 PM on February 19, 2006

notcostello, any update? We just met with a surgeon for my my mom. She needs a lower anterior resection after finding a possibly malignant growth during a colonscopy -- I'd love some just-went-through-this advice for her (and me.)
posted by desuetude at 6:45 AM on September 6, 2006