As we enter the final days of Breast Cancer Awareness Month, I am remembering a time over a decade ago, when immersed in a sea of pink ribbons I felt part of something. I had been diagnosed with breast cancer as the month of September turned into October and surrounded by Breast Cancer Awareness Month activities I felt supported as a newly diagnosed patient.

But as the last days of October faded and the pink ribbon wearers began to disappear, I was left wearing the everyday reality of a disease that I still felt ill-equipped to bear. I still feel a sense of sadness today at all that I had yet to learn and go through on my journey with breast cancer.  I often wonder how much easier that path might have been had I known then what I know now.

One thing I know for sure is that those of us who have traveled this road can ease the way for others who are just starting out. In this spirit, I reached out to the breast cancer community to ask them what advice they would give to a newly diagnosed person with breast cancer.  You will find their responses below alongside some of my own.

Find Support

Cancer research advocate and 20+ year breast cancer survivor, Lisa DeFerrari [1] emphasizes the important role of support. “Don’t be afraid to reach out for support early on,” she advises. “I realize that many of us are very independent-minded – I certainly am,” she says, “but breast cancer and learning how to deal with it are complicated and there are lots of great resources out there. Reaching out for information and support can also be a way to recover from the sense of loss of control that often comes with a cancer diagnosis.”

To this cancer blogger, Megan-Claire Chase [2] adds, “let go of your pride. Don’t be afraid to start a GoFundMe. You’d be amazed by people’s generosity to pay your medical bills and regular bills.”

Ask Questions

“Ask questions and push for information,” recommends Julia [3] creator of #BCCWW breast cancer Twitter chat. “For people living with long term conditions and disabilities before breast cancer it is valid to worry about the consequences of cancer and the risks of treatment on your wider health,” she adds.  “Don’t let anyone invalidate those concerns with ‘but cancer’  – it’s your body and health,  it’s you that has to bear the possible risks and potential consequences of both.   So make sure they’re centered to the degree you need them to be.”

Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney [4] who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, urges women to ask about their breast density even after a diagnosis, as this is important information because It will influence their surveillance imaging. Siobhan highlights the fact that “many women diagnosed with breast cancer don’t know anything about dense breasts and associated risk factors.

Be Your Own Advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  Siobhan advises taking time to absorb what’s just happened and then take notes at meetings and consultations. “Find out as much as you can about your particular cancer and speak up,” she recommends. “Ask for MRI, PET, CT any baseline scans available to you. Find reliable, evidence-based information.”

Jo Taylor [5] founder of After Breast Cancer Diagnosis stresses the need to be your own advocate. “Be your own advocate – try to understand what type of breast cancer it is and ask questions and research it. Always ask for copies of scans and details. Then find your community who support you and you can support them.”

Employment Advice

Megan-Claire offers this advice for those who are working full time at the time of diagnosis “Talk with your manager or direct supervisor and work out a plan where you can work from home (if not already due to COVID) and work out a schedule for coverage when your chemo treatment starts.” She also offers two practical tips when undergoing chemotherapy: “I suggest getting your chemo on Fridays so you’ll have the weekend to rest,” and “ask your oncologist for a temporary handicap sign. It helped me immensely due to deep fatigue.”

Tackle Fatigue

As Megan-Claire mentions, fatigue is an issue that cancer patients face. We all know what it’s like to feel tired — physically, mentally, and emotionally, but usually, after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. You experience persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease. A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done about it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you [6].

Journal Your Thoughts

It is amazing how quickly you forget what you thought and felt in those early days of diagnosis and treatment. Megan-Claire recommends keeping a journal to note down your thoughts. “It could just be a sentence or two and either save them on your laptop or in a journal,” she recommends. “There was a lot I forgot about and was glad I had my little notes from the start of treatment to look back on.”

Honor Your Grief

One of the things you might like to journal about is the feelings of loss and grief you will experience with a cancer diagnosis. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies. Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness [7].

Respect the diagnosis; question the prognosis

This final piece of advice comes from Betsy Mullen [8]. “Respect the diagnosis; question the prognosis,” she says. “I was diagnosed with a grade III triple-negative breast cancer and given 2-3 years to live at best. That was 29 years ago.”

To Wrap Up

Being diagnosed with cancer is a life-changing event. Know that you will go through many emotions and experiences on the roller-coaster ride of diagnosis, treatment and beyond.  Each person will experience the journey in their own way.  While there’s no right or way to go through the experience, it’s important as mentioned above that you find support. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.

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Notes

[1] Lisa DeFerrari Finding Great Support After a Cancer Diagnosis

[2] Megan-Claire Chase Life On The Cancer Train

[3] BCCWW https://twitter.com/bccww

[4] Siobhan Freeney https://beingdense.com

[5] Jo Taylor abcdiagnosis.co.uk

[6] How To Cope With Cancer-Related Fatigue

[7] Grief, Loss, and the Cancer Experience

[8] Betsy Mullen https://twitter.com/betsymullen