A story of how small things really can make a big difference

asco-logo I run a dilator program for women with rectal or anal cancer where I educate patients about the need for and correct use of vaginal dilators to mitigate the effects of radiation on the vaginal wall. Many women don’t understand the need for dilators after radiation for this cancer, so I always start with a description of the anatomy and the rationale for the use of dilators. I provide the women with two dilators (small and larger) and a booklet explaining the why and how to do this. It also affords the women an opportunity to talk about their quality of life at or near the end of their radiation treatment and to ask about sexual activity after treatment. These visits are usually relatively brief, and the patients are happy to be almost done with this phase of treatment.

One woman stands out for me among the many I have seen over the years, and her journey with me has just begun. She was referred to me by one of the nurses in our gynecology group because during a meeting with the nurse to discuss her treatment plan; she became very distressed. She told the nurse that the thought of using dilators was terrifying to her, and she was not sure she was going to be able to manage. She had not yet begun her lengthy course of radiation treatment and the nurse correctly anticipated that this might not be a routine case.

I met with the patient and her husband a short time after receiving the referral. I could immediately see that she was extremely anxious and within moments of sitting down, she was in tears. And I hadn’t even started asking questions yet! She disclosed that she had a history of childhood sexual abuse, and this had impacted on each and every aspect of her diagnosis and treatment. She was having flashbacks and was extremely anxious and emotionally reactive with every additional piece of information provided to her. She repeated over and over to me, between sobs,  that she did not think she was going to manage to use the dilators and that her flashbacks had increased since this was mentioned.

I took a deep breath and told her that she did not have to use the dilators at all if even the thought of this was causing her so much distress. I hoped that this small piece of information could help her feel like she had some sort of control. While we recommend the use of dilators, we don’t know with any certainty if the patients use them as prescribed or at all. We don’t have good evidence that they help to prevent stenosis, yet we still prescribe them, hoping perhaps that they may help some of the time or for some of the women. I had discussed my plan with her radiation oncologist and we had agreed that using a small dilator was better than no dilator at all, but that ultimately it was her choice and if she couldn’t or wouldn’t use it, or if it caused her so much distress that it was unbearable for her, then she did not have to use it.

She looked at me and stopped crying. I started to talk to her, pausing often to ask her if I could continue giving her information. I explained the rationale for the use of dilators, as well as our limited evidence about when to start and how long to continue. She listened, and her breathing slowed.

“Have you ever seen a dilator?” I asked, not knowing if this was going to precipitate more sobbing.

Her green eyes glistened with the beginning of tears, and she shook her head.

“How do you imagine a dilator to look?” I asked.

She couldn’t articulate this in words but used her hands to suggest something large and frightening.

“Would you like to see one?” I asked gently. “You may be surprised by what it looks like…”

With a brief nod, she indicated that she could perhaps have a look at one.

When I first started working at this cancer center, I asked to see the dilators that they were providing to patients. My reaction was one of shock; they were hard plastic rods, about 12 inches long with flat ends. I could not imagine anyone inserting one of those anywhere, much less into a vagina that had been exposed to radiation or surgery. I started asking questions and found someone who worked in the medical devices department who turned out to be one of the most engaging and helpful professionals I have met. When I explained that the dilators his department was making were, for want of a better descriptor, not great (and that patients were probably not using them because they were scary to look at and uncomfortable to use), he asked me to tell him how he could make them better. So we talked and involved one of the radiation oncologists who does high-dose radiation to the vaginal vault, and before too long we had a prototype and then a steady supply of dilators that we could provide free of charge to our patients. He used a 3D printer to make the molds and could keep making them for as long as we needed them. They are flexible, come in three sizes, have a base that the woman can hold onto as she inserts it, and are not that scary!

So I took one of the small dilators out and showed it to her. She looked shocked, and while I wanted to ask what she was thinking, I did not want to start the tears again.

“Would you like to touch it?”

She hesitated for a moment and then gingerly put out her hand. I placed the dilator across her palm, and her fingers closed round it; it bent a little, and she started to laugh.

Her laughter was almost as intense as her sobs had been just 20 minutes earlier. She moved the dilator from hand to hand, she bent and twisted it (they are made of rubber and urethane and have some flexibility, enough to be inserted without bending,  but are not completely rigid), and the look on her face showed amazement and surprise. I will ask her one day what she imagined it was going to look like — I think that in her mind it was like something out of a horror movie. But in her hands, it was just a small thing: 3 inches long and 1 inch in diameter, a piece of rubber with a rounded tip and a flat base. She took it home with her even though she had not yet started her radiation therapy. I wanted her to have it so that she could look at it as it really was and not let her imagination or memory run wild. I wanted her to get used to its presence in her post-treatment life and perhaps, even to befriend it.

For me, this is a story of how small things really can make a big difference. The nurse anticipating that using the dilator was going to be problematic for the patient — and then challenging for her health care team — was the first step. Even before that, the willingness of a biomedical engineer to work with us to create something that patients would actually use and not avoid was a small step with big impact. And while trying to not be self-serving, my gentle and incremental work in exposing her to this small thing that in her mind was huge, made a difference too.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

Image credit: Shutterstock.com

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