Losing Your Uterus, Losing Your Mind: Scientific Validation for Memory Loss After Cancer

When Samantha R. stumbled across a study suggesting that hysterectomies may cause memory problems, she clicked, read, and shared on our I’m A Cervivor Facebook group, kickstarting a dynamic discussion. Samantha shares her experience, her relief in finding the article, and the community of support that her post generated:

“Chemo brain gets a lot of discussion and attention, but not the topic of woman who had a hysterectomy or who have early onset menopause and who have similar fogginess. I actually did not have a hysterectomy but rather chemo-rad-brachy (stage 2b), which was oh so fun.  As radiation and chemo essentially killed my uterus and ovaries, this study about hysterectomies and memory loss caught my eye and resonated.

A wildlife ecologist, Samantha was diagnosed with cervical cancer at age 36 while in the midst of her postdoctoral research. The stress of the diagnosis and treatment on top of research and academics were brutal.

“After cancer, I couldn’t handle stress like I used to. I used to be able to do the cramming and the crunch time. But after treatment, I had really bad ‘chemo brain’ for at least a year until it finally started getting better. I still don’t feel as sharp as I was before, even though it’s been eight years since my diagnosis. As an academic with a master’s degree and a PhD, this had been really hard for me because my work, at the end of the day, depended on my brain. And of course brain fog doesn’t just impact work, but so many parts of life. My recall is slower. My short-term memory is slower. Things take me longer. It’s been hard for me to accept that my brain now functions differently. I used to be quick and make witty remarks. Now three days later, I come up with a response!”

Samantha was poking around online when she stumbled upon the article, New research suggests hysterectomies may cause memory problems.

“It’s about a first of its kind study conducted in rats (not humans), but the implications that our uterus plays a role in memory is just really interesting. I found it worth sharing because having an explanation gives women like us validation for having memory loss. It is nice to have some scientific acknowledgement of what we are going through.”

Newly published research has challenged a long-standing belief in the medical community that uteruses serve no purpose in the body except pregnancy. When researchers at Arizona State University performed hysterectomies on rats, the animals’ memory suffered.

Samantha’s Solutions: Coping Skills and Lessons Learned

Samantha now works for the federal government to protect and rebuild habitats for sea birds and sea ducks, specializing in restoration after oil spills. She shares some of the memory loss coping skills that she employs:

  1. Become a note taker: I take a lot of notes. I use a bullet journal. I now have a huge collection of hundreds of notebooks I’ve filled and it keeps growing, but it’s working for me.
  2. Keep a “done” list: Every day I write down not just to do lists, but “done” lists – so I remember that I did something. I capture calls I made, e-mails I sent, discussions and conversations I had.  My “done” list is my biggest coping strategy. My short term memory was really impacted from my chemo and the early menopause that resulted, so my journals and my “done” list are my recall mechanism. 
  3. Be proactive when it comes to therapy: My therapist has been amazing in coaching me to not beat myself up and to move forward and to be okay with not being okay. I had a hard time being weak – not just physically, but mentally weak. I’m a huge advocate of starting therapy early, when starting treatment, to get ahead of the roller coaster ride. I’d fallen into a severe depression after treatment was over, and I wish I’d started therapy earlier. 
  4. Don’t be afraid of medication: Medication has helped me battle my depression and panic attacks. My body doesn’t create estrogen and progesterone anymore. That makes a person crazy! It is not in your head! 
  5. Find your escape: I read a lot to escape. I’ve started meditating. I also started art therapy and do woodworking and jewelry making. I recently learned how to weld. I’ll never forget when I was in treatment and a social worker was trying to talk to me about art therapy and painting. I was like ‘screw you, I’m dying here.’ But now, years later, art has been my coping mechanism. It has become my sanity. (But I will never tell someone that during treatment! Only after!)

Eight year cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival 5 times. Learn more about Samantha’s Cervivor Story here.

Gratitude Awakening

Dogwood in bloom.

A sense of deep gratitude is something that I have carried with me since finishing treatment for cervical cancer. Especially during those first phases of recovery when you feel like you’re stepping out of the fog and back into the world. It was overwhelming to go outside and have my lungs fill with fresh air, feel sun on my skin, and to finally have an ounce of energy with which to enjoy it. I would walk my dog every day and take it all in with my (cautious) sense of victory over cancer. No phone to distract me, just the awe of what once felt so mundane.

Cervivor School Cape Cod 2018

Like so many of my Cervivor sisters, I had a complete shift in my mindset after going through cancer. There’s a level of gratitude attained after being isolated and having your mortality hanging over you like a dark cloud every single minute.

The sick feeling is so strong that it’s hard to imagine ever being able to feel better. I remember spending those hard days thinking about what I would do once it was all over. I mainly daydreamed about family gatherings with yummy meals, or spending time out in nature. The shift in mindset also pertained to relationships. I was alive, and ready to live my best life. That meant deciding what, and who, was worth my time and effort. It meant ditching behaviors that didn’t serve my purpose, and creating boundaries where needed to stay true to what was important to me.

In this uncertain time of the COVID-19 pandemic, the whole world is getting a taste of what it’s like to be threatened by their environment, stuck with their worries and no sense of control over any of it. I see friends beginning to talk about what they’ll do after this is over, and what I see is so similar to my own experience. People aren’t talking about going on a lavish vacation; they just want to get their nails done. Or hug a neighbor. See a movie in the theater. Catch up with friends in person. Not have to disinfect groceries. Normal, everyday activities that were previously taken for granted are now desperate aspirations. That is what it feels like all the time for those fighting cancer, but at an even more basic level. Personally, I dreamed to be able to walk four feet to the bathroom without breaking a sweat. Not having to be bathed by my partner while holding the wall for support. Feeling fresh air on my face and having real light shine down on me after recovering indoors for so long. Walking up a flight of steps all by myself. Holding down food. I learned that being mad about my situation didn’t make it go away. There was no workaround. The only way out was through. 

Pretty Azaleas blooming in my yard.

Having been faced with all that and making it through to the other side, I was going to start living my life unapologetically and with a renewed sense of appreciation for what matters at the core. When you can no longer do such simple functions, you learn what matters in life, and what really doesn’t— like the ten extra pounds gained from coping with a very scary time.

My hope is that when the pandemic is over and everyone can come out of their homes and go back to work, that a prevailing sense of gratitude will make the world a bit softer of a place to be, for the short time that we’re here to enjoy it. I hope people will see that the time to live your life is now. I hope when regular life resumes, and it will be that ever present “new normal” us cancer survivors so often speak of, that people don’t forget what it was like to have the rug yanked from under them by circumstances beyond their control. Hard times make us strong and perspective, makes us compassionate. I am grateful that we still have the wonder of the outdoors to soothe our souls, Zoom to see our friends, and for the people working so hard to keep us safe and healthy. 

Mary Baker is a three year survivor of stage 3B cervical cancer. She is an advocate for women’s health, a mom of two and proud Cervivor Ambassador and Cervivor School graduate.