I have so many questions...If it is an old and large tumor is it a stage 4? Will Chemo make me lose my hair? Can I still work? How do I tell a 12 and 15 yr old that their mother has cancer? It's a disgusting place to be.
Tumor age and size has nothing to do with stage. Stage of cancer is determined by the following:
T = tumor depth....how far the tumor has invaded the colon/rectum wall
N = number of local nodes affected (not distant nodes)
M = number of mestasteses (both distant lymph nodes and/or tumors in other organs such as liver, lung, kidney, etc.)
Hair loss - generally NO to the following drugs: Xeloda(oral), 5FU (infused), oxaliplatin, Avastin, Erbitux
yes to: Irinotecan
MOST patients at least start with either one of the following:
5FU by itself
Xeloda (oral form of 5FU) by itself
XELOX (Xeloda + oxaliplatin)
FOLFOX (5FU + oxaliplatin)
XELOX + Avastin or Erbitux
FOLFOX + Avastin or Erbitux
Generally, patients (also some exceptions .....for example diabetes may preclude someone NOT using oxi and instead using erbitux) don't start with irinotecan. This drug is given with either 5FU or Xeloda
My point....don't worry about hair loss. There is generally some thinning with either Xeloda or 5FU but honestly, it's usually only YOU and your hairdresser who really notices.
Many people have continued to work during treatment. The one thing (IMO) that most cancer patients want is to BE NORMAL. If normal means working....then that's what they do. A lot will depend on the type of job you have. You may find that you need to take an extra break or two.....and as long as you communicate this with your job and talk with HR about this, they should accommodate you. It is required by law that a company make accommodations as long as those accommodations don't cause the company adverse consequences. In other words, an extra break or two....understanding that you may need to use the bathroom more frequently, etc. are reasonable accommodations. Asking your employer to allow you three 1 hour naps/day (hypothetical example) and every other day off are NOT reasonable accommodations.
As for telling your 12 and 15 year old....you tell them right now that the doctor found a tumor.....you know that it is cancerous but until you have the surgical pathology report you are really in limbo as to what it all means. You assure them that so far, everything looks good. You emphasize the positives (as positive as cancer can be) by assuring them that the CT scan showed that it had NOT spread.....that by all measures so far....everything looks to be contained to one area and that you are going to have surgery to have it removed. Don't lie to them....kids have other friends who have had family members with cancer and they may hear some awful stories from their peers. You don't want them to assume that YOU are going to be like their friend's relative/friend. Let them know that you are doing everything possible to get this out and kill this nasty tumor and that may likely mean you are going to have to have chemo for maybe six months. Make them aware that NOT ALL CHEMOS are the same. The stories that they've heard or the shows that they have seen are NOT necessarily the same as the chemo you will likely undergo. Most colorectal cancer patients don't end up looking like a holocaust survivor.....they work, they play and sure, there are times when they don't feel well (for me, that meant feeling like I was having yucky PMS/menstrual cramps) and that this, too, will pass. You and your kiddos need to know that the doctors have drugs to help combat the nausea (not everyone gets it) and that TOGETHER you will deal with this. Be realistic....your kiddos need to know that life will change....you will get more tired for parts of your treatment....and that you may need them to pitch in some. Maybe that means they need to help with throwing a load of laundry in or helping more with the dishes after dinner. Don't underestimate your kiddos....they are old enough to be doing a load of laundry, taking out the garbage and helping with other chores. Tell your 15 year old that you plan on teaching him/her to drive in a few short months (that was one thing that kept me normal....teaching my #4 how to drive just like I did the other 3 kids). Let them know that sometimes you will be tired and maybe they need to feed the pets or take them outside. They NEED to understand what is going on....don't tell them that everything is fine because honestly, even if the path report comes back as an early stage I, you're still going to be nervous and anxious for years to come and kiddos can sense that. Your 'NORMAL" is going to change....and they need to understand that as well. Maybe that means mom goes to bed earlier and wakes up later....especially on he weekend. They are old enough to know that mom can sleep in and they can make their own breakfast. It may not be what you want them to eat but it isn't going to hurt them to eat a bowl of cereal instead of some eggs. My youngest was only slightly past 15 when I was diagnosed.....he didn't care if the kids at school knew that mom had cancer but dang, there was NO way he wanted to tell them that I had RECTAL cancer......he just told them that I had colon cancer.....you're one step ahead on that front!! It's okay to joke about it.....don't be afraid that you are minimizing your disease.....you have to have a sense of humor about all of this. I know that this sounds macabre but it's reality. Still find the humor in your life....that isn't going away just because you have cancer. Share your goals with your kids....things like teaching them to drive, or being there for their first dance or watching them play in the state cup finals....whatever it is that is important to them.....make it important to you as well and vocalize that. Let your kids know that their future is YOUR future...its comforting for your kiddos to know that YOU plan on being around for a long long time (heck there's no guarantee in life cancer or not) and that you're still their mom. Its as much for you and your children to know that, as much as possible, you're going to try to keep things as 'normal' as possible BUT.....you have to relay to your kids that starting today, there is a NEW NORMAL in the house. That doesn't necessarily mean anything is awful or terrible.....just that things may change. As I said earlier, the new normal may only mean that your kids take on a few new chores in the house and give mom extra time for a nap. However you approach it, don't delay in telling them. YOU will feel better as will they. Kids, especially kids the ages of yours, are more perceptive than you think. They know something is wrong....they can sense it. Let them be there to help and comfort you as well as you comforting them. Together you will get through this....you're not alone.