My anal cancer story is very similar to others who have gone through it: hemorrhoids that never went away; a fast and furious treatment schedule of radiation and oral chemotherapy once I got a diagnosis; bedridden for a month and a half due to radiation burns; and a new sense of what’s important in life.
Where my real anal cancer story begins is when I started to get back out in the world (my treatments ended just shy of my 39th birthday at the end of 2021, so we were still in the middle of the pandemic).
A few months after treatment, I started getting hot flashes. This term is a perfect description of what they are; I would be in the middle of talking to my husband, and all of a sudden a rush of heat would flash through my body. Whatever I was talking about at the moment would be swiped from my brain. I would have to walk away and catch my breath or grab some water.
The night sweats were so intense that I often couldn’t sleep, so I made an appointment with my local OB/GYN to talk more about what to expect with post-cancer menopause.
At that appointment, the doctor focused solely on the hot flashes and night sweats. She didn’t ask to take blood samples of my estrogen levels or even talk to me about any other symptoms that potentially come with menopause. I left there feeling very frustrated and under the impression that I would be dealing with hot flashes and night sweats for a little while until they simply went away.
A few months later, brain fog, depression, lack of focus, anxiety, and not being able to say words that were on the tip of my tongue were daily parts of my life. I had also gained 20 pounds since visiting the doctor for my original menopause appointment. Although I did know that weight gain was a possible side effect, I didn’t know it would happen so quickly.
From talking to my post-treatment oncologist and OB/GYN, they both made it seem like all I needed to work on was exercising more and eating healthier -- and that that would fix the problem.
But, even with giving up gluten, dairy, and working out on a daily basis…nothing changed.
Finally getting help with menopause symptoms
I was talking to my anal cancer physical therapist about my issues, and she asked what I was doing to treat menopause. I said that I was trying to get to the gym more often and eating more whole foods at home. She said that for most people going through menopause, that isn’t enough. She suggested that I talk to a menopause professional outside of my network.
I made an appointment, and within minutes of that appointment, the menopause doctor asked if I had taken any blood samples to see where my estrogen and testosterone levels were.
We talked about menopause symptoms, too—and it’s so much more than just hot flashes or weight gain.
I realized my anxiety, brain fog, joint stiffness, dizziness, lack of focus, sleep problems, slowed metabolism, night sweats, and headaches could all be related back to the lack of estrogen in my body.
She asked for my family history, specifically if breast cancer runs in my family, to which I answered no (this is an important thing when it comes to thinking about getting started on hormone replacement therapy or HRT). Within a week I was able to schedule lab work and find out that my estrogen and testosterone levels were almost at 0.
I got on an estrogen patch and progesterone pills right away. After a few days of starting HRT, I felt like I had had my first cup of coffee in over a year and a half. The brain fog lifted, and I felt inspired to work again.
I felt like myself for the first time since before my anal cancer diagnosis. After a few weeks of that, I started on testosterone; I’ve been sleeping better and it’s been easier to work throughout the day without needing a nap by 11 am.
HRT isn’t for everyone, especially those who have a history of breast cancer in their family, but for me—a 40-year-old mom of one who was thrown into menopause due to anal cancer treatments—it was everything.
I would have loved to have received more support from my oncologist after treatment was over, and frankly I am upset that I had to go outside of my medical network. Because the tumor in my pelvis has been only one part of my anal cancer journey and I am finally feeling in a place where I can move forward with a clearer head.
The one lesson that anyone reading this can take away is to keep asking questions and monitor how you are feeling. By asking questions and confiding in an expert, I’ve been able to feel like myself again.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.