How One Patient Turned Caregiver Leaves No Stone Unturned

As a pediatric nurse, Karen was familiar with cancer. However, it was not until her own diagnosis of bladder cancer — and her husband’s just six years later – that she learned how important support really was.

In a recent interview with CURE, Karen spoke about her experience as both a patient and a caregiver, as well as the advice she would give her younger self through Merck’s Your Cancer Game Plan “With Love, Me: campaign.

CURE: Can you tell us about your experience with bladder cancer, as a patient and then a caregiver?

Karen: I was finding that I was having some blood spotting and I was post-menopausal, so I thought it was just part of the process. It seemed like it came once a month about the same time my period used to come, so I didn’t really think too much about it until it happened weekly. This all happened in 2010, but for about a year before that, I was experiencing recurrent urinary tract infections. In fact, I remember talking to the urologist because my primary care sent me to one, telling him that I felt like something is pushing out of me when I am urinating.

Then, fast forward to 2010, my primary care provider sent me to get a sonogram thinking it was a gynecologic issue. But there weren’t any and everything was normal there. But they did find the tumor in my bladder doing that sonogram. So, that was how I was diagnosed.

(Six years later), the first cardinal sign for my husband was blood in his urine. What often happens, once you get the diagnosis, you start thinking about whether there were other signs. And probably for about two years he had groin discomfort when he urinated and had been going to the doctor for that. It wasn’t until there was blood in his urine that we were able to discover what the problem was.

Can you tell us about the With Love, Me campaign and why it’s so important for the cancer community?

The campaign is really about emotional support first and foremost. It is under Merck’s Your Cancer Game Plan and is a collection of heart felt stories and letters that patients and caregivers have written to their younger selves, talking about what they learned, what they wish they had known at diagnosis.

In your letter you address sitting in a waiting room with old men — how can we combat the stigma that bladder cancer only really occurs in old men?

The statistics show that it (bladder cancer occurs in) about 20% to 25% of women. We are a minority. I think having campaigns like this, to have that awareness for the public to see that it is in women and it is younger women, can change that.

You talked about support groups — both as a patient and a caregiver – why should others consider joining support groups to help?

Even if you have a good supportive family and friends, cancer is still very lonely. There is a real need to be able to identify with someone who is going through a similar situation that you are or have some common ground to be able to relate to. You are going to ask questions and share situations, and maybe side effects or what you are experiencing, what is normal or not normal. It does help to build your support network and make you feel not so alone. It doesn’t have to be a support group that you go out of your home to, that is one way to do it, but now with all of the technology that we have, online groups or one-on-one’s and programs where survivors are paired with current patients for support and to build a relationship.

What is your biggest piece of advice for other patients facing a cancer diagnosis? And similarly, for caregivers of loved ones with cancer?

The biggest piece of advice is to build that support network. You will have a much smoother journey through your diagnosis, and you will get more help, and probably have better resolution of side effects from treatment even because you reached out and got support.

Also, get to the best center that you can. Sometimes it might mean driving a couple of hours to get to a treatment center that specializes in your disease.