Fighting for Answers
- Before her cancer diagnosis, Lisa Snooks, 43, had been repeatedly brushed off by doctors who told her that her symptoms were nothing more than hemorrhoids, which are swollen veins in the anus and lower rectum, a common condition.
- When the pain became unbearable, the South Wales native pushed for tests and then finally found out she had anal cancer.
- Symptoms of anal cancer can include bleeding from the rectum, pain around the anus, a mass or growth in the anal canal and anal itching.
- HPV, a highly common sexually transmitted virus, can lead to several types of cancer, including anal cancer. It is important to get past any perceived embarrassment with discussing these topics with your doctor.
By this point, Lisa said the aggressive cancer had “eaten away” part of her bowel, or intestines, and was also “protruding externally,” described a post by DailyMail.com.
Read MoreA colostomy, according to Cleveland Clinic, is an operation that “redirects your colon from its normal route, down toward the anus, to a new opening in your abdominal wall.” This is where the bag is attached to collect your body’s excrement.
Lisa then underwent an 11-hour surgery during which her rectum, vagina and pelvic floor were removed, leaving a “cavity wound.” She had to begin intense chemotherapy and radiation.
Thankfully, Lisa is now in remission, but her treatment has left her in poor health as she struggles with a low platelet count and mental anguish from all she has endured.
Shockingly, Lisa said she lost her brother to the same condition, a low platelet count, in 2021. “I have the same faulty gene,” she said. “It’s scary to beat cancer and still be in the same position.”
Part of her mission, however, is now to help educate others on the symptoms of anal cancer. “As soon as you notice the smallest symptoms, go to the doctor straight away,” she urged.
Symptoms of Anal Cancer
Alerting your doctor of your family’s health history is extremely important. It is also crucial to keep pushing for answers if you feel that your doctor is not taking your health concerns seriously.
Keeping track of any lingering signs or symptoms can help your medical team assess what may be going on.
Symptoms associated with anal cancer may include:
- Bleeding from the rectum
- Pain around the anus
- A mass or growth in the anal canal
- Anal itching
These symptoms do not always mean you have anal cancer if you experience them.
Other benign (noncancerous) ailments including hemorrhoids, anal fissures, or anal warts may also produce these symptoms. However, if you do experience these symptoms consistently, you should consult your doctor.
Anal Cancer and Its Connection to HPV
HPV, a highly common sexually transmitted virus, can lead to several types of cancer, including anal cancer. Anyone can get it, and there is nothing to be embarrassed or ashamed about. It’s mainly important to be aware of what havoc it can wreak and get educated over its relation to cancer.
“The vast majority of humans in the U.S., both men and women, will eventually get infected with human papillomavirus,” said Dr. Allen Ho, a head and neck surgeon at Cedars-Sinai, in a previous interview with SurvivorNet.
HPV and Cancer Risk: The Basics
“The important thing to know about HPV is that there are many different strains, and only a couple of them tend to be more cancer-inducing,” Dr. Ho explained.
“Probably less than 1% of the population who get infected happen to have the cancer-causing virus that somehow their immune system fails to clear, and over 15 to 20 years [it] develops from a viral infection into a tumor, and a cancer.”
What Is a Colostomy?
A colostomy or ileostomy means that part of your intestines are hooked up through the front of your belly, and you go to the bathroom through a bag that attaches to your skin.
Some colostomies are large, some small; some are on the left side of the abdomen, some are on the right, others may be in the middle. It all depends on the type of cancer you have and which part of the intestine was removed.
“Any time you have surgery on the intestine you can’t predict how well it’s going to heal. The majority of the time we can put patients back together, we connect one piece of the intestine back to the other. If we are able to do that successfully, they don’t need to have a colostomy bag,” said Dr. Heather Yeo, a surgical oncologist at Weill Cornell Medicine and a SurvivorNet advisor.
“That being said, sometimes people get blockages and need emergency surgery and those patients are more likely to need a temporary colostomy bag. Sometimes people have cancers that are too big to take out, and those people may also need a colostomy bag.”
Living with a Colostomy Bag – Getting Past the Shame
One of Dr. Yeo’s patients, Francine Susco, didn’t think she would ever be able to cope with a colostomy bag after surgery for colon cancer.
“At the time I was 62, ” Francine previously told SurvivorNet. “I said, ‘I’ve had a good life. If the cancer comes back, it comes back. I really would rather be dead than live with a colostomy bag.'”
Dr. Yeo assured her that it would be temporary and gave Francine the confidence to persevere.
‘I Began to Embrace it’: How One Survivor Learned to Live with a Colostomy Bag
With the help of a stoma nurse, Francine adjusted to life with a bag, which also included clothes that concealed her new accessory. Soon she was in a routine
“The fact that I was able to handle it and dress with it and cover it; I began to embrace it,” Francine shared. “It’s manageable one day at a time.”
“Once you get over sort of the psychosocial effects, you can lead a totally normal life. It’s not painful. It’s just getting used to a different way,” Dr. Daniel Labow, former chief of the Surgical Oncology Division at Mount Sinai, told SurvivorNet in a prior interview.
Here is guidance on some of the specific scenarios relating to having an ostomy bag.
- Clothes: You do not need to wear special clothes. Other people won’t be able to see your bag under your clothes. And it’s good to carry a change of clothes and a change of ostomy equipment for the first months after surgery.
- Baths and showers: You can take a bath or shower with or without your bag on. It’s totally up to you. There are many different resources and supplies available, to cover and protect the stoma if you want.
- Sports: You will probably be able to play most sports. You might want to wear a special belt to protect your bag and keep it in place.
- Swimming: The pouching system is water resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma. You can swim with your bag on, as long as you are adapted to it. It’s important to empty the bag before you swim and to check if the seal is secure.
- Sex: You can have sex. But you might want to wear a special wrap to protect (and cover) your bag during sex.
- Travel: When you travel, be sure to bring extra supplies to manage your colostomy. If you fly, take your supplies in your carry-on luggage.
Most of the time, an ostomy can be reversed. This means you will undergo another surgery two to three months after your cancer operation to remove the bag and put your intestines back together.
“We do it very rarely, actually, for colon cancer, almost never, unless there’s something about the surgery technically or an emergent nature to it that means we can’t safely reconnect,” says Dr. Labow. ” If we do do it for colon cancer, 99 percent of the time almost it’s temporary, could be as short as six to eight weeks, let everything heal, and then reconnect them down below.”
Be Aware of Potential Complications
If you are living with a stoma bag temporarily or permanently, it is important to be aware of potential complications and alert your doctor immediately should you experience any of the following:
- Cramps that last more than two hours
- Continuous nausea or throwing up
- Bad or unusual odor for more than a week
- Change in your stoma size or color
- Blocked or bulging stoma
- Bleeding from the stoma opening or in the pouch
- Wound or cut in the stoma
- Serious skin irritation or sores
- Watery stool for more than five hours
Advocating for Your Health
When it comes to your health, speaking up can lead to a better overall outcome, and receiving a diagnosis at an earlier stage.
Survivor Sue Manber wants to remind anyone facing a new diagnosis that there is still hope — but it’s also critical to be actively involved in your care. She knows because she’s been through it.
“We’re living at a remarkable time where we’ve unlocked the power of cancer care,” Sue told SurvivorNet during a recent chat. “We’re seeing huge increases in the survival rates. We’re bringing drugs that were — just a few years ago — just for metastatic patients into the earlier setting.”
‘The Patients Who Have the Best Outcomes are Able to Advocate for Themselves’: Rare Cancer Survivor Sue Manber on Why It’s Critical to Speak Up
Diagnosed with an extremely rare cancer called Merkel cell carcinoma more than a decade ago, Sue has become an advocate for patients and now works for Publicis Health.
During our conversation, Sue stressed that even with all the advances in the world of cancer care and treatment, it is still critical that patients advocate for themselves.
RELATED: ‘Be Pushy’ When it Comes to Getting Answers About Your Health
“It’s becoming clearer and clearer that the patients who have the best outcomes are able to advocate for themselves, or have the support system around them in order to advocate,” Manber explains. “I tell patients all the time: the thing you don’t say is directly related to the care you don’t get.”
Her advice to patients is to let your care team know what’s important to you. Don’t leave a doctor’s office with questions still lingering — this is the time to speak up and make sure you are heard.
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