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.

“I Looked in the Mirror and Saw a Warrior Looking Back at Me” – Video & Interview

Becky, a young mother from California, came to Cervivor School in September 2019 to learn how to fully and effectively share her cervical cancer story. Just two months later, she faced a recurrence: a diagnosis of an aggressive cancer in her liver and pelvis. Becky shows in a Cervivor story video what it means to embody the Cervivor Spark. Amid her devastating news and the restarting of chemo, Becky gathered her daughters, family and friends to join her in shaving her head. We spoke to Becky about the video, her inner strength, her Cervivor Spark and how shaving her head in an empowering way enabled her to see herself as a warrior.

Shaved Head and Cervivor Spark in the Throes of a Cancer Recurrence: Q&A with Becky

1. How did you first find Cervivor?

I stumbled upon Cervivor on one of my many late nights on Google, searching for information. Crying by myself in the middle of the night, I found Cervivor.org and the stories that so many women have shared.  I sat awake in bed the whole night reading story after story. For the first time since my diagnosis – a very dark, scary and lonely road –  I finally found someone who had gone through what I was going through. I related to somebody! I joined the Facebook group and participated in the online conversations. The support I found there from women who GET IT is nothing like I’d ever experienced. After reading all the Cervivor stories and joining the Facebook group, I wanted to find people in real life and went to my first Cervivor MeetUp. The MeetUp was a new beginning for me and is a big part of the path that led me to go to Cervivor School and to become a Cervivor Ambassador.

Becky at Cervivor School 2019

2. How did this video come to be?

Cervivor School helped me to be comfortable fully sharing my story to help other women. It helped me to truly understand and appreciate that the mission to end cervical cancer needs my story, my face and my voice. I knew I wanted documentation of this crazy journey. I wanted to have a video that I would be able to look back on,  especially for my girls. I had already started a Cervivor story video and when I had decided to shave my hair,  I reached out to a close friend of mine and asked her to video that whole process. The video is beyond what I could have ever imagined! The video is perfect. I can’t even tell you how many times I’ve watched it! 

3. Tell us about the decision to shave your head, and the decision to do it surrounded by family and friends. What did that moment mean to you?

I decided to shave my head before I even started chemo again. I knew I was going to lose my hair, but I was told by my medical team that it typically doesn’t happen until after the second chemo session. When my hair started falling out just two weeks after my first chemo session, I knew it was time. Cancer had already taken so much away from me, and I wanted to own my hair and have the power to shave it before cancer also took that away from me.

I have a dear friend who also happens to be my hair stylist, so there wasn’t anyone else I wanted to shave my head. I decided to do it surrounded by my family and friends because I knew it was going to be extremely tough and emotional. But I mainly did it for my two daughters. I wanted them to be part of the process so that it wouldn’t seem so scary to them. Having them be a part of it, and to have them help cut and shave it, was a moment that I will never forget. It was beyond powerful and touching. And it definitely helped my daughters to be part of the process.

Once my head was shaved and I looked in the mirror, for the first time I saw a warrior looking back at me. I no longer saw a weak and lost woman in the mirror. I knew in that moment that I was going to fight with everything I had in me.   

4. The video shows and tells such a powerful story of inner strength and resolve amid a difficult diagnosis, and truly shows what it means to have the “Cervivor Spark.”  How do you keep up the fight and help your “fire get stronger and stronger each day”?

Honestly, it’s my girls that help me fight. I fight for them and it’s their two beautiful faces that keep me going every single day. If there is a day that I just feel defeated, all I have to do is think of my girls and their future and instantly that fire just grows. Before cancer, there wasn’t anything as a mother I wouldn’t do for my girls and that sure as hell isn’t going to stop now. If anything, it makes my role as a mother have more meaning. I look at my girls in a different light now. I will never stop advocating for myself and I will never stop doing my own research because I have two little humans who need their mom and who don’t deserve to go through and see things that cancer has brought into their lives. This isn’t about me. I didn’t give myself that fire. It’s my strong and resilient daughters that deserve all the credit.

Becky and her “strong and resilient” daughters who keep her going, every single day.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.