If you have been diagnosed with an inherited colorectal cancer syndrome, your healthcare provider may have recommended that you consider having risk reducing surgery. Risk reducing colectomy is the removal of part (partial colectomy) or all (total colectomy) of the colon to reduce the risk of developing future cancer. Risk reducing hysterectomy and/or bilateral salpingo-oophorectomy are surgeries to remove the uterus and/or fallopian tubes and ovaries to reduce the risk of cancer.
Having risk reducing surgery isn’t easy and isn’t for everyone. It is a very personal decision and there are pros and cons to consider which you should discuss with a qualified healthcare provider, preferably someone who specializes in hereditarycolorectal cancer. In order to help you think about and prepare for making a decision about risk reducing surgery, we wanted to go over some questions to ask and things to consider in making this decision.
Before going any further, we wanted to address one of – if not the most concerning – question that individuals often have after hearing the word colectomy: “Will I end up with a bag?” A “bag” is a term often used to describe a pouch that is attached to the outside of the abdomen that collects waste. Although there are rare circumstances when this might be necessary, risk reducing colectomies infrequently result in a permanent bag, though there may be a temporary one depending on the type of surgery. It is still important to ask your surgeon what are the risks of ending up with a permanent bag in the future.
Another key factor to consider is your personal risk for cancer and how worrisome that is for you. There are many different types of hereditary colorectal cancer syndromes, and each has its own cancer risks. The most common hereditary colorectal cancer syndrome is Lynch syndrome. However, there are five different genes that can cause Lynch syndrome, and each gene has a different risk for colorectal, uterine, and other cancers. So it’s important to not only look at what condition you have, but what specific gene is causing this condition; that can drastically influence your colorectal cancer risk.
Some people are comfortable with knowing they have a moderate to high risk for colorectal cancer and doing frequent screening, such as colonoscopy, to catch any cancer that might happen when it is still very small. Dr. Dennis Ahnen, gastroenterologist, talked more about this in his previous post. Other people find a lower increased risk quite worrisome and would prefer a risk reducing surgery over frequent screening. A genetic counselor or other healthcare provider with experience in hereditary cancer can help estimate your cancer risk for you.
Another important thing to consider is how the surgery will impact your quality of life. Ask your surgeon what may, or is likely, to happen to you physically as a result of the surgery and how other people have handled it. For example, will the surgery cause you to need to use the bathroom frequently throughout the day? Will it impact your ability to have children (if that is something you want to preserve)? Or perhaps you have a job or favorite hobby that requires a lot of physical activity. If so, it would be important to discuss how the surgery would impact your ability to continue these things.
These are only a few of the factors to consider when deciding about risk reducing surgery, and everyone is different. Be sure to discuss all of your questions and concerns with your surgeon and others managing your care. Don’t be afraid to ask too many questions! Some people find it helpful to talk with someone else who has been through the surgery and/or screening procedures before. In the Resources section of this website, we list several advocacy and support groups, many of whom can connect you with others who may have gone through the same thing you’re considering.
For a quick reference, we’ve provided a list of the top 10 questions to talk to your healthcare provider prior to considering risk reducing surgery:
- What risks are involved?
- What will recovery look like (How soon can I go back to work, what limitations will there be in the short term on my physical activity, etc.)?
- (For colectomy) Will I still need colorectal cancer screening after the surgery and what will that entail?
- How will this procedure affect my physical activity such as exercise, sports, daily life?
- Will I need to change my diet, and if so, what will that entail?
- Will I need to go to the bathroom more frequently?
- Is there anything else that might change for me after the surgery (dehydration, sexual function, childbearing)?
- Can the surgery be done through a minimally invasive procedure with laparoscopy?
- What are the risks and benefits to a non-surgical approach to reduce risk, such as frequent screening?
- (For colectomy) Will I need a temporary or permanent bag/pouch?
