Breast cancer mental health support + a personal journey

Breast cancer mental health support - woman comforting cancer patient

A psychotherapist shares her journey with triple-negative breast cancer and offers advice for how to support your mental health

If you or a loved one has breast cancer, mental health support is something they desperately need but that’s not automatically part of the cancer treatment plan. From the perspective of a triple-negative breast cancer survivor and clinical psychotherapist specializing in chronic pain/illness, trauma, and grief, here’s my story and how to support yourself and a loved one through cancer.

“If I had relied on a self-exam, I’d wouldn’t have survived”

There’s no history of any cancer in my family—in my biological lineage. However, my ex-husband’s family does have a history of cancer. So, for my daughters, I’ve always tried to be a good role model for breast cancer advocacy support. I felt that, if it were something that they saw me doing, they’d be more aware of their own breast health.

We supported breast cancer in several ways throughout the years. When I turned 40, I decided it was time to start yearly mammograms. In my mind, the point was to still model being proactive about screenings. For years, these mammograms were just something I did. But, when I turned 47, the breast center called back and requested I go for an ultrasound. Surprised, I agreed—and I didn’t feel very worried at first.

The moment I knew it was cancer

By the time we got to the ultrasound, my thoughts were starting to shift. And that appointment really changed everything. The ultrasound tech didn’t say anything, and didn’t have to. When I looked at the screen, I saw a little black spot that was “spiky.” In that moment, I knew: that’s cancer.

The doctor came in and let me know that a biopsy was necessary. Later, when the results came back, my primary care called me several hours before my appointment with the specialist. “Hey,” he said. “You have an aggressive form of breast cancer. You need to keep your appointment at the center. And get on the phone now with surgeons. You really can’t waste any time.”

With that, he hung up. This “good” doctor, whom I’ve had for years, just gave the “c” diagnosis (everyone’s worst nightmare) in the most abrupt and rude way. There was no regard for my mental or emotional wellbeing. Speechless and stunned, I called my husband to tell him. We spent the day together, crying, scared and preparing for the appointment at the breast center.

My results shocked me, but I’ve learned to see the blessings with it

Because of where the cancer was located (close to the chest wall), it would’ve never been detected in a self-check. As it turned out, trying to be a good role model for my daughters had actually saved me. But in all of those years supporting breast cancer, I had no idea there were four basic types of breast cancer. Triple-negative was a new phrase for me. Basically, there’s 1) progesterone, 2) estrogen, 3) HER2 and 4) triple-negative (doesn’t have any of 1, 2, or 3).

The breast center said to wait to meet with surgeons to see exactly what treatment was needed and in which order: surgery, chemo, and possibly radiation. So many questions went through my head: How is this happening? How aggressive do I need to be? If they only take one breast, will I worry about this coming back in the other? Will I worry forever no matter what? I opted for a double mastectomy. Somehow, to me, it felt more balanced. I didn’t want to leave any “fuel” for more cancer. I didn’t want to feel like I was waiting for the other shoe to drop.

Life keeps moving, and cancer only makes it move faster

Some people say everything stops when there’s devastating news. With triple-negative breast cancer, I quickly learned nothing stops. We celebrated Thanksgiving and prepared for a different kind of Christmas. Looming ahead, within 5 weeks of surgery, was the promise of chemo. I cut my long hair short. On a Friday, I finished my finals for my clinical psychology degree. The following Monday, 6 days before Christmas, I went in for my double mastectomy surgery.

So began the “breast cancer bus.” Only there was little mention of mental health support for breast cancer patients along the way

I say that once you get breast cancer, you get on a “breast cancer bus.” That bus moves very quickly. The medical doctors who do this day in and day out, give you prescribed stops, where you have your surgery and your chemo and your expanders and appointments. It’s such an intense process. But there don’t feel like there are many choices along the way. In hindsight, it feels like so many things were minimized. Beyond the physical toll, the mental and emotional pain were not very well addressed.

Supporting your mental health through your breast cancer journey

In terms of mental health support, though, what was offered was very little. The “medical team” provided a single call with a social worker and suggested attending the cancer center’s breast cancer support group. While support groups can be wonderful, if they are too large then it’s hard to get the support you would like. In the one I went to, it was full of women from very different breast cancer journeys and that made it hard to get the kind of specific support needed at the time. Most people who are newly diagnosed with breast cancer really need to have one-on-one mental health support, especially during the first few months of their cancer journey. 

Find a qualified professional right away to help you move through your journey

Even though I was finishing my schooling for my masters in clinical psychology with a specialization in chronic pain/illness, grief and trauma, I needed help to deal with the mental and emotional impact that cancer brings. I was fortunate to already be established with a mental health therapist of my own who specializes in chronic illness, due to my interstitial cystitis. My wish for anyone and everyone going through cancer is to have a professional who can give them tools to help them manage and move through the entire cancer journey. 

When you’re done with treatment or in remission, it’s cause for celebration. But many people think that’s where your journey ends. It helps to know and realize that dealing with cancer is actually a chronic health issue. There can be long-term repercussions to chemo. I have neuropathy, heart, and lung issues that stemmed from cancer treatment, and those issues will be lifelong. Many other women experience similar things, and these things may limit the lifestyle they want or dream of post-cancer. Most of us need continued help to bolster our resilience.

Recognize “mixed emotional feelings” are very normal

It’s important to recognize that, while celebrating the end of treatment, you might also be feeling grief and loss from these things or from not feeling like you know who you are. And that cycle continues. Cancer patients have been through a lot and it’s an emotional rollercoaster. Your anger, grief, anxiety and sadness are all valid feelings. That voice in your head, your inner critic will try to diminish your feelings and say well, at least I’m alive or I should be grateful. But you can’t dismiss how hard it is to rebuild your self-image. How difficult it is to let go of how you’d always seen your life. To deal with your own mortality. You can be grateful to be alive and also be mourning how things used to be before cancer.

Get as much support as you can

One resource that I’ve found personally helpful have been breast cancer support forums online. It’s a sisterhood no one wants to join, but it is a supportive sisterhood. These women all have unique situations, but there are also many similarities—and each and every one has experienced breast cancer. Be careful not to get overwhelmed by stories and outcomes of others. Use these groups to bolster your emotional health, but not in place of working with a specialist.

My advice: find a therapist or coach who specializes in cancer and chronic health problems, and work with him or her one on one; at least for the first part of your journey. Make sure he or she is educated and experienced in chronic illness, trauma, and grief. Not every therapist can help each client move through grief and the complications of cancer. Find one you feel comfortable talking to. Go at your own pace: don’t let anyone rush you through feelings and journey. 

Mental health support for a loved one with breast cancer, during and after treatment

As a chronic pain/illness, grief and trauma psychotherapist, resilience coach, and breast cancer survivor, the first thing I can say is that breast cancer mental and emotional support starts with watching your comments when talking with a loved one who is going through cancer or treatment. So many of us are dealing with our own stuff and having someone close to us can bring up our own fears and issues. Or, it makes us reckon our own mortality.

In those moments, it can be easy to turn to humor to deflect those uncomfortable feelings someone’s health problems bring up in ourselves. Humor can be amazingly beneficial in stressful times. However, be aware of any “dismissive or demeaning” humor comments that might not be supportive. For instance, I had someone tell me, “well, you’re getting a whole new boob job for free.” That comment is dismissive of the cancer journey. 

If you can, it helps to be able to hold your friend’s or family’s pain or sadness. Sit with them and don’t try to immediately push them out of it. Let them cry, grieve and simply be there. You can’t and don’t have to “fix it”. Many times, though, family and friends are limited in how much mental health support they can provide with breast cancer (or any other type). Encourage your loved one to find a licensed therapist or coach who is well versed in cancer, and who can teach them tools to deal with the many emotions they’re experiencing and feeling. Ideally, I think anyone who has been diagnosed with breast cancer should be paired with mental health support from the day they receive their diagnosis.

When someone has completed treatment, don’t assume they’ll be back to “normal” when treatment ends. Cancer is a lifelong journey.

So many people step up to provide some type of support during treatment. But much of that support evaporates as you finish treatment, and, in my opinion, that’s when women with breast cancer need mental and emotional support the most because for the first time since their diagnosis, they’re able to stop. And that slow down means many feelings that were pushed aside will start to weigh heavily. In my research, my clinical practice, and my experience as a survivor, I can attest that the time after chemo and treatment is silent, and that silence is loud.

Don’t disappear after treatment. Yes, be excited that part of your loved one’s journey is done, but recognize that, for cancer patients, the journey isn’t ever really finished. There’s trauma there, and there’s always a little bit of fear close by—even well into remission. It’s just as much work to go from “surviving” to “thriving,” and it requires a different mindset and skill set to build your life back up after treatment ends. 

Be patient as you or your loved one heals

From diagnosis to treatment to life after treatment, cancer is an ongoing journey. Be patient with yourself and others as you fight to feel better, both physically and emotionally. Even though there are many scars that come with cancer, it is possible to grow from the experience and heal.

Tacha Kasper, LMFT