After a diagnosis of cancer, many people find it difficult to get the emotional support they need. This is for different reasons including the fear and uncertainty cancer brings and the complexity of family relationships. This video offers guidance on how patients can navigate these challenges.
This video offers perspectives on this topic from both survivors and health care professionals. It is being offered through a four-part “Navigating Challenges” series for people newly diagnosed with cancer facing real-world barriers to high quality cancer care. This ASCO patient education video series was made possible by a grant from the LIVESTRONG Foundation to the Conquer Cancer Foundation.
Other Videos in This Series
Navigating Challenges: Talking with Your Cancer Care Team
Navigating Challenges: Making Decisions about Your Cancer Treatment
Navigating Challenges: Managing the Cost of Your Cancer Care
ASCO® Cancer.Net: Doctor-Approved Patient Information
Navigating Challenges: Finding Emotional Support after a Cancer Diagnosis
Gina Villani, MD: I think that it’s probably important to take a pause once you’ve been given that diagnosis to really, think about what are the things you’re feeling. What kind of emotions are you going through?
It’s an intense situation. And it’s okay to feel a whole bunch of different emotions, anger, sadness, frustration. And I think it’s important when you’re first diagnosed to just let those feelings kind of come in and feel them.
Donna: When I first got the … it was a phone call. I had a biopsy and it was a phone call and the doctor called up and said I’m sorry you have cancer and I said I’m sorry you must have the wrong number, because there was just so much going on wrong in my life that I couldn’t possibly have cancer. That was my initial response.
Desiree: I received the news at work because I had said to the radiologist that had done the biopsy, I really would not want to come back in the office just for you to give me the news – call me.
And so she did. So when I got off the phone, I just stood there and just said – wow. I didn’t call anyone, I just continued with my work day. I went home and I didn’t even say anything when I first went home because I really needed to try and figure out how to deliver the news.
Dr. Villani: How are you going to process the information that’s just been given? Certainly I advocate talking to your family and people that are closest to you. But I think it’s probably smart to wait before you open it up to the wider audience. And the reason for that is that everybody’s got a cancer story. Everybody knows somebody that’s had cancer, a relative, a friend. And when you go out there and tell people I have cancer, this is my diagnosis, you’re going to hear stories that maybe you’re not ready to hear.
Donna: Initially I spoke to my best friend, my children and my family. From there what I did was write everything down in an email, a massive email and send it to everybody. I found there was so much information dumped on me that I couldn’t take individual phone calls from people because it would make me more nervous. So what I did was put it all in emails and send it out to everybody.
Jamie: I think it’s good after diagnosis to have a couple of people who you can be very open with. I found that it was difficult, when I would tell someone that I had cancer they would cry and they would want someone to hug them. And it took five or six people before I realized that that was going to be a normal response. So it was nice to have a few people who I could speak to and I could let them know that I was scared, because everybody else needed reassurance from me.
Dr. Villani: Patients and dealing with their families, that issue comes up all the time. And I see a lot of patients who don’t even want to tell their family that they’ve been diagnosed with cancer. And I think that’s because they’re worried about how their family’s going to handle it. You know, they’ve been the caretaker. They’re used to kind of being okay and taking care of everyone else. And so not talking to your family, I believe, creates actually more problems, that family and loved ones know that things are going on.
They sense that there’s a problem. And it’s that not knowing, that lack of information, that silence that can really make things kind of balloon. So, I think it’s very important from the beginning to talk to your family members to let them know what’s happening, to let them know how you’re feeling, to talk about your feelings, your concerns about them and their feelings.
Terry: I watched my family members, all four of my grandparents and both my parents died of cancer and I saw them sort of play games about what they said to who, when. And I’m on the page that sort of said that there was sort of an enormous burden to all of that.
I’m on the page that says you try to have full and open disclosure. I told everybody pretty much everything. And it puts you in a more comfortable space.
Desiree: So I actually didn’t tell my husband until a day later and then had to, because I had to build myself up for the shock that he was going to have. So I told him and he was like okay, well, life has to go on, so what are our next steps. And each person that I told, I had to actually sit down over breakfast, lunch or dinner and try to communicate just to help them with the experience.Speaker 2: Transcript text.
Jamie: I think it’s really good to let people know what you need, either emotionally or logistically. Everybody wants to help really badly because they feel very helpless and so I feel like it was important for me to be able to say I don’t need anything right now but it’s going to be really helpful if you can watch my kids for me on this afternoon or you know I would love it if you would bring my family dinner, things like that.
Maha Hussian, MD, FASCO: there are many ways of getting support. And probably the most immediate and available on demand is one’s family and friends. And the one thing I should point out, there isn’t a regimented system that people have to follow. I generally recommend to patients to go with what they think they’re comfortable with first. And if things cannot be handled at a personal and family and friends level, then I – generally there are different support mechanisms available for patients.
Donna: I feel with support groups you have to shop around. It’s kind of like looking for a therapist; you have to find a place where you fit in. I was pretty far along in treatment when I found a support group that I actually clicked with.
Desiree: I often find that on the journey, although you may have family, friends, spiritual advisors and great doctors, if people have not been on the journey, they really don't understand what you are going through.
And oftentimes you really don't want to have to say a lot of words, you want someone to get it. And everyone else who has not been on the journey, you find yourself with a thousand words and they are still looking at you puzzled as to – what do you mean?
Claudia: I sought help... I asked friends that had gone through the same thing and they... advised me... helped me. Because since they had already... had already gone through this process
Terry: The Maine Coalition to Fight Prostate Cancer has eight network groups in the state. And one of the things that we’ve found is that family members can be immensely helpful, but until you’ve gone through the process of hearing a cancer diagnosis you aren’t sort of in the same spot. And what we have is a band of brothers that have gone through that experience and you know I would sort of say there is a sort of network effect here which is you know if you’ve got three buddies and you’re doing a home improvement project one of them can probably help you with a problem, but if you’ve got 500 people and you ask a question you’re going to have somebody that knows exactly what you’re up against and be able to make a contribution.
Jamie: I did participate in a support group that was for moms with young children. And so it was a small group that didn’t meet very frequently. But it was neat just to sort of be in a group of people who had very similar experiences to me.
Unknown: you have gone through the same thing although at different ages or different stages of cancer or different types of cancer, but you understand the meaning of each one.
Dr. Hussian: People need to do what they’re comfortable with, and it’s very individual. It’s individual. It’s cultural.
Donna: People need to do what they’re comfortable with, and it’s very individual. It’s individual. It’s cultural.
My experience, my suggestion to newly-diagnosed people would be to communicate your needs as best as possible. And keep in the forefront that you need … that we need somebody to take care of us. As a mom and as a woman I found that I was a primary care taker for a lot of people. Through this experience I learned that I needed to go to people that would help take care of me in this situation, because I had the needs.
There were family members that were toxic to my situation and I learned early on that I couldn’t have them in my life at that time because it was detrimental to my own health. And that was a bit awkward but it was something you have to learn along the way.
Desiree: I think that once you have been on the cancer journey, you really need to start reflecting and assessing what is best for you and it’s not really about anyone else. So if you have to let people go with love, it’s probably the best thing for you to do at that point in time just for your own healing
Dr. Hussian: Remember, doctors aren’t there just to take care of the physical part of cancer. The mental part is very important. And what I tell patients is this is that partnering at the mental level is very critical because this is how the body heals.
Donna: What I didn’t understand was that there were counselors specifically for cancer. So I started seeing an oncologist counselor. It was free. And the first thing I said to her was I’m almost done treatment and now I’m so depressed I can’t get out of bed. And her response was that you’re exactly where I’d expect you to be, you’ve been at war for your life and now that things are starting to wind down you’re realizing like holy cow, I had cancer and all the emotions are bubbling up.
She pointed me to exercise programs and to start out very slow.
So that was an eye opener for me. But I also through the counselor started taking a poetry writing class and a journaling class. And it was with other survivors and I felt very comfortable in that environment.
Desiree: And if you need to go to a therapist, it’s not to be embarrassed to say oh, I am going to a therapist, I am crazy. You’re not crazy, you’re just really trying to fortify yourself in order to cope because you definitely need everything, you need an arsenal to get through this.
Dr. Villani: So, cancer is, as I said, a very traumatic and dramatic diagnosis for someone to receive. And everybody, no matter who you are and how strong you think you are, needs some kind of support
[Closing and Credits]
Cancer.Net®: Doctor-Approved Patient Information from ASCO®
ASCO's patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical Oncology. ConquerCancerFoundation.org
Dr. Mary Wilkinson, Dr. Raymund Cuevo, and the staff at Medical Oncology & Hematology Associates of Northern Virginia
Carolyn B. Hendricks, MD, The Cancer for Breast Health
Hasbro Children’s Hospital
Helen F. Graham Cancer Center at Christiana Care Health System
The Adele R. Decof Comprehensive Cancer Center at The Miriam Hospital. The Miriam Hospital is a teaching hospital of The Warren Alpert Medical School of Brown University
Video Footage and photography courtesy of:
St. Jude Children’s Research Hospital Biomedical Communications
Moffitt Cancer Center
University Hospitals Case Medical Center Seidman Cancer Center
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
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