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But after five years of being cancer-free, I finally transitioned to survivorship. That meant I only needed to come back to MD Anderson once a year for check-ups. It also meant I’d meet with a nurse or a physician assistant instead of a doctor. And finally, it meant I could start focusing on things related more to my quality of life than my survival.
Still, before my first survivorship visit in November 2022, I remember thinking, “Do I really need to go to this thing?” Now, I know that the answer is “YES!” Because my case manager offered solutions to problems I didn’t even know I had. And, he is helping me prevent future complications that I never realized were potential issues.
Here are five of my biggest a-ha moments since entering survivorship.
Small adjustment to swallowing exercise enabled me to gulp again
Swallowing was really hard for a long time after I finished my treatments. It took me almost a year to pass the swallowing test that allowed me to stop receiving all my nourishment through a feeding tube.
Even then, eating or drinking anything was a very slow process. I could only take one small bite of food or sip of liquid at a time, then chew or swallow it. And sometimes, when you’re really hot and thirsty, you just want to chug down a cold drink. If I’d done that back then, though, I would’ve choked and spit it right back up.
It wasn’t until physician assistant Shawn Terry showed me a slightly different approach to one of my swallowing exercises that I learned this ability might not be out of my reach forever. And within three weeks of making the adjustment he suggested, I was gulping down water in a way that I hadn’t been able to in five years. I was so excited that I called my family over to watch me!
Minor tweak to mouthwash formula significantly reduced my ‘salty days’
Until my cancer diagnosis, I’d never had a single cavity. But since finishing oral cancer treatment, I’ve had at least four. Part of that is due to radiation therapy and part of it is due to changes in my saliva.
I get a really dramatic dry mouth now. And sometimes, my saliva is thick and much more acidic than normal. I call those my “salty days” because they make everything I eat or drink taste like salt — even milk and water. It completely kills my appetite.
To neutralize the acid, Shawn suggested that I increase the ratio of baking soda to salt in the mouthwash I already use several times a day to keep my mouth moist. It worked! Now, instead of enduring that awful salty taste for four days every three months, it’s gone by the next day. The relief is not immediate, but it’s still a huge improvement.
Clear, fitted teeth-aligning system may help me preserve my smile
Another thing I learned from Shawn was that while I couldn’t use one of those clear, fitted teeth-aligning systems to fix anything that was already crooked after treatment, I could use it to prevent my teeth from getting any worse.
That turned out to be useful information since I had four lower teeth pulled during my surgery. They’d been a little crowded to begin with, so I’d thought those remaining would naturally just kind of space themselves out. They ended up doing the exact opposite.
All of my teeth have shifted now in a way that makes my smile less aesthetically pleasing. But it doesn’t bother me too much. It’s not a big deal, compared to the alternative. Still, I’m glad to have an option to preserve the smile that I have now.
Posture-correcting device is helping prevent future problems
The scarring in my neck tends to make me lean forward a lot. That will only get worse as I get older. I didn’t want to develop a hunchback, so Shawn suggested a simple posture corrector that I could buy online for about $15.
I put it on, tightened the straps, and started wearing it for about an hour every night. I’ve only been using that device since Christmas, and it’s already helping me hold my head up straighter.
It turns out that’s pretty important. Scar tissue can harden and thicken over time. If that happens, it could pinch or squeeze my carotid artery, causing serious circulation problems. That’s why one of the first things Shawn did as my case manager was to order an ultrasound of my neck to establish a baseline. I hadn’t even thought of that. But Shawn did.
Simple massage trick resolved my painful oral ‘charley horses’
Shawn also helped me with the terrible pain I experienced when I yawned really hard. I was driving the first time it happened. It was so bad that I had to pull over. I thought I was going to die. It was like having a charley horse in the bottom of my mouth.
Shawn explained that the pain was caused by a nerve spasm due to surgery and radiation. The floor of my mouth and tongue were rebuilt using a muscle from my arm, and when it spasms, it twists so hard that the bottom of it pops down and I can actually feel it under my chin.
Shawn taught me how to make it stop by massaging the area for a few seconds and then forcing a swallow. Before that, it would take several painful minutes for the nerve to finally relax. Now, I know exactly where to press to make it stop, and the muscle pops right back into place.
Lesson learned: Simple solutions can yield big payoffs
All of these things might seem really minor. But they don’t feel minor when they’re happening to you. And collectively, having such small tweaks result in such huge quality of life improvements is a really big deal. It makes me more grateful than ever for MD Anderson.
It’s so reassuring to know that even now that I’ve transitioned to survivorship, I still have people at MD Anderson who care about me and know what they’re talking about. Even when they don’t have the answers to my questions, I know I can trust them to find out and not lead me down the wrong path. I know they care.
MD Anderson has already saved my life once. Nobody knows my mouth better. I appreciate that they’re still trying to help me live well. And, they’re just a phone call or a MyChart message away when I’m not.
Until my first survivorship appointment, I’d never even thought about the concept of “after-care” as something I should want. I didn’t know what that meant or what it would look like. But it’s wonderful to know that my care didn’t stop just because my cancer did.
Request an appointment at MD Anderson online or call 1-877-632-6789.
The retired bilingual teacher was diagnosed with metastatic breast cancer in February 2019. At her family’s urging, she traveled from her Austin, Texas home to seek a second opinion at MD Anderson. Here, she met with a multidisciplinary team of experts who recommended a treatment plan involving chemotherapy, a mastectomy and radiation therapy.
Between side effects from the cancer and treatment, Debbie was using a walker and supplementary oxygen daily by the time she completed breast cancer treatment in March 2020.
“My energy felt sapped, the lowest it has ever been,” Debbie says. “If I attempted to do anything physical, I would find myself needing to rest the next day. I wanted to do things, but my body was unable to keep up.”
A physical activity program designed for cancer survivors
Eventually, Debbie was able to stop using additional oxygen, but she tired easily and found herself exhausted by cleaning up the kitchen and other household chores. That’s when she heard about Active Living After Cancer.
The free 12-week program is offered online through community organizations. It gives cancer survivors a virtual support group-like atmosphere as they learn how to increase their physical activity, build healthier habits and cope with the challenges of survivorship. MD Anderson researcher Karen Basen-Engquist, Ph.D., recently published a paper in Cancer that showed the program successfully improves physical functioning, physical activity and health-related quality of life for participants.
When Debbie enrolled, she wasn’t sure what to expect or how much she’d be able to do, but the facilitator for her group said that even starting small could have a big impact.
“When I learned that exercise would help keep my cancer away and improve my lungs, I was sold!” Debbie says. “But I still wasn’t sure how I was supposed to exercise if I didn’t have any energy.”
Yadi, the group facilitator, told her to start with two minutes of exercise a day. “I thought that was rather odd. What could two minutes possibly do?” Debbie recalls. But she listened and set a timer. Before she knew it, two minutes a day slowly crept up to 10 minutes, then 10 minutes turned into 20 minutes.
Gaining the tools to maintain a healthy lifestyle
Each week, Debbie’s Active Living After Cancer group would meet online to learn a new exercise and behavioral skill, and to share their experiences with each other. The group gave Debbie something she couldn’t get from family or friends or a traditional exercise class: a sisterhood of survivors who understood the joys and struggles of life after cancer.
“The camaraderie of talking to other cancer survivors really helped because they understood what I was going through,” Debbie says. “The motivation Yadi gave us also helped. She wouldn’t push us, but she wouldn’t take no for an answer either.”
By the end of the program, Debbie was taking daily walks around the neighborhood with her dog as a warmup to home exercise videos. She enrolled in a group exercise class at her gym and began to improve her diet as well. The goal-setting and resiliency skills she learned over the 12-week course – plus a continued group text chat with her friends from the program – have helped her keep up the healthy lifestyle changes since she finished the program in July.
While Debbie is now free from breast cancer, during treatment, her doctors found a papillary thyroid tumor. It’s not growing quickly or causing side effects, so her care team is monitoring it, but Debbie feels prepared to face it if the situation changes.
“If I do need to get surgery for my thyroid tumor, I’m stronger now to do that,” she says. “I feel so much better and my confidence is higher. I definitely have more energy now than I did a year ago.”
Learn more about Active Living After Cancer and see upcoming classes.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
To a cancer patient, one of the most magical words in the English language may be “remission.” For those fortunate enough to hear it, it imparts not only a much-hoped-for dose of good news, but also a profound sense of relief.
But what does the term “remission” actually mean? And how does it differ – if at all – from “no evidence of disease,” or even “cancer-free?”
We asked medical oncologist Phat Le, M.D., for insight.
What’s the difference between remission, cancer-free, and no evidence of disease?
A lot of people use those terms synonymously, but “remission” and “no evidence of disease” (also known as NEOD or NED) are probably the closest by definition. Officially, both mean that no cancer is currently detectable in the body. That may be based on scans, bloodwork or some other kind of test, such as a breast biopsy or a bone marrow biopsy.
“Cancer-free” is a little more complicated, because it’s not based on something we can measure. Instead, it implies that not only is there nothing detectable in your body as cancer, but we also believe no residual cancer is left anywhere, so there’s no chance of the cancer ever coming back. And that’s a lot trickier to say, because there’s always at least a very slight risk of recurrence, if you’ve ever had cancer before.
So, how do doctors determine which term to use with a particular patient?
That’s really based on the doctor and what they feel comfortable with. Personally, I tend to use “remission” and “no evidence of disease” the most.
Does the type of cancer influence which term you use?
No. But it will determine which type of surveillance testing your doctor chooses.
With solid tumors like lung cancer, for instance, doctors might order a CT scan. But with prostate cancer and ovarian cancer, doctors might use blood tests to look for tumor markers or certain proteins. Doctors also look for evidence of diseased cells in blood or bone marrow samples with leukemia, lymphoma and other blood cancers.
Does the length of time a cancer survivor has gone without a relapse affect which term doctors use?
No. Not really. There are no special terms used for going 5, 10 or any other number of years without a recurrence.
But sometimes, doctors will declare a patient “cancer-free” after a certain amount of time has passed without a relapse. It usually coincides with the transition from active surveillance into survivorship, when patients begin needing fewer or less frequent check-ups.
What’s the one thing people should know about this topic?
Though all of these terms are sometimes used interchangeably, it’s important to ask your oncologist specifically what they mean. Because I may use it one way, and another physician might use it another.
It’s also important for all cancer survivors to be on some type of surveillance program. Some cancers are considered very low-risk, so if you’ve already gone 5 or 10 years without a recurrence, it’s highly unlikely that you’ll ever have one. But it’s still not impossible. So, you need to keep an eye on it, just to make sure that if the cancer ever does come back, you catch it as soon as possible.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
I've got a beautiful life to look forward to after cancer, and I plan to make the most of it.