Finding Cancer Support in Different Places For Different Diagnoses

I have been diagnosed with breast cancer for the third time, and I find it interesting how the places where I seek support have changed over time.

The first diagnosis in 2006 was when I was in my 30s. I had a lumpectomy, chemotherapy and radiation. Someone in the hospital gave me a flyer that introduced me to a local nonprofit with patient navigators and who ran support groups. They had just formed a new group for younger women like me, and this newer group became incredibly important to me.

During meetings, I would listen to the speaker during the main event and then make friends with other attendees during the time before and after the main event. Many of the group members had small children, like me. I had a newborn, and it was comforting beyond words to know I was not alone; I could talk, laugh and cry with other people who understood what I was going through because they had been there, done that. We grieved together when breast cancer killed one of us. We celebrated one another’s milestones and successes.

I also scoured the internet, looking for survivor stories. I loved the stories best on Dr. Susan Love’s website. Again, it was real people describing their personal journeys, and reading what they wrote helped me not feel alone.

The second diagnosis was in 2020, which was an awful year for needing treatment for any disease. Because of COVID-19 protection protocols, my husband wasn’t allowed to accompany me to appointments with the oncologist or radiation oncologist. He couldn’t enter the building where I got radiation therapy after my lumpectomy. I had to walk into the hospital alone for the surgery, and that was hard for me in ways I didn’t expect.

It's funny how the little things can mean so much, such as a loved one just sitting near you while you wait for something you dread.

We had moved to a new state by the time of the second diagnosis, which was in my 40s, so I couldn’t return to the in-person meetings of my former support group even if there had been any. The local in-person group that met monthly for coffee was too far a drive for me, so I never went.

Instead, my former group from the old state held monthly support meetings over Zoom. I was delighted to be able to join. In that first meeting, I was the person with both the oldest and newest diagnosis in the room. It was a strange, uncomfortable feeling, because nobody knew me well enough to laugh about it with me.

What wasn’t helpful about online meetings for support was the need to resist the side conversations that would have naturally arisen while someone else talked. I’m not referring to the rudeness of having a separate conversation where you ignore the main speaker. I’m talking about the small, whispered moments where the person next to you briefly agrees with something, or wiggles in their chair before asking a spontaneous question or interjects a quick experience that is relevant to the moment. Instead, we all held back from most of the spontaneous outbursts because we wanted to be polite to whomever was speaking.

Oddly, that lack of spontaneous sharing drained the real value of support sessions for me.

I didn’t need them for the education. I needed them for socialization, and the people over Zoom quickly left as soon as the meetings ended. There was no milling around after the main event to chit chat with other people in the room. No getting to know anyone better when you liked what they said earlier and could tell them so. There was no easy way to ask them for contact information before or after the meetings, so I was never able to form new relationships with the other attendees.

Not feeling supported or fulfilled, I stopped attending. I also fell into a deep depression that took a while to overcome.

Now it’s 2025. I’m in my 50s and it’s my third diagnosis. Initially, I explored online options.

One nice but dangerous resource I discovered is Reddit. It’s nice because it’s always available. It’s dangerous because lots of people are posting medical questions that only test results and specialists can answer reliably. Crowdsourcing has its limits, and those limits shine clearly in the breast cancer subreddit rabbit holes. Some support is there, but it’s very hit or miss.

Even though I mostly felt worse after reading subreddits, that is where I found the name of a certain Facebook support group that became important to me. This group is specific to the kind of reconstruction I want after my mastectomy. With its very narrow focus, the members have a lot in common with one another.

It has become my lifeline to the same kind of free flowing, warm, genuine, generous support that I enjoyed in my 30s. One person asks a question and dozens of answers flow as people report their lived experiences. The sheer volume of activity strikes me as a big plus, because you see consensus as well as a range of people’s lived experiences. The respect for different choices is high, as is the outpouring of supportive responses when someone is hurting.

It’s amazing. It’s helpful. It’s valuable.

I feel like I found my tribe, and once again it is comforting beyond words.

Perhaps another in-person support group is on the horizon for me. I spoke to a social worker today who is affiliated with my new oncologist’s office. (The old oncologist’s office did not offer this, so I had no idea social workers were a thing and I am delighted to learn they exist.) The social worker will send me an invitation to next month’s support group meeting with the location that isn’t too far from home.

I also read, finally, the list of resources the oncologist’s office provided. I am impressed with the collection of emotional, social, dietary and fitness support available in my local area. I had no idea!

It’s all weaving into a “tapestry of support” that lifts me up while I navigate the waves of emotions that are part of my current situation.

Over the years, the availability of support for cancer patients/survivors/thrivers and caregivers seems to have expanded. I have become less timid about seeking the support I need. These changes are absolutely for the better.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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