Patient Advocate Perspective: Sharing the News of Your Cancer

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Topics include: Patient Stories

Dealing with a cancer diagnosis is tough, but sharing the news with family and friends can be even more difficult. At a recent Patient Power forum at MD Anderson Cancer Center, patient advocates Paul and Lynette share their own experiences and offer advice for communicating with loved ones and colleagues.

Sponsored by Patient Empowerment Network through educational grants from Onyx Pharmaceuticals, Novartis, and Millennium: The Takeda Oncology Company.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Jack Aiello:

For any of the patients here, what advice or what did you do in terms of how did you let family, coworkers, kids, parents know about your disease? And is that the path you would have taken again, or might you have changed that? Paul, you have a mike, so.

Paul Rabuck:

As we all know, when you’re told you have cancer, it’s like getting hit in the face with a shovel. It’s a feeling I hope I never have again, and I hope that my spouse and none of my family go through the same thing as I did. It’s not really anything you can keep secret.

Your attitude changes, and, of course, word gets out pretty quickly that you’ve got a problem. And the support of your family and your loved ones is a big part of your recovery or getting along with what you’ve got. Again, it’s all part of being positive.

I have friends and you have, too, that have come down with cancer or whatever, and you need to be there for them and tell them they can make it. And don’t tell them it’s not a big deal, because it usually is. The Anderson network is where you get tied up with somebody who already has been through whatever.

And they can tell you, yes, this hurt or no, this doesn’t hurt. Even though the doctor says this doesn’t hurt, he may not have been there. So I encourage you to use those resources which are available. But as far as family and friends and all concerned, that word gets out pretty quickly. And if you go to a church or whatever, you’re going to be on their prayer list pretty quickly, and that’ll help also.

Jack Aillo:

Lynette, do you want to add on to that?

Lynette Heniff:

Sure. It’s definitely important to know yourself when you’re sharing. You know, some people don’t want to talk about it and some people do. I think it’s important to talk to someone about your diagnosis, someone other than your doctor. For me personally, the way I phrase it is I spewed it all over everybody.

I think if they worked with me, they knew I had cancer; they knew something was going on. I talked about it. That was part of my therapy. I didn’t use the MD Anderson network that Paul was mentioning. I went to a few support group meetings but not many.

A lot of my support and therapy has actually been through friends, coworkers, my small group at church. So, you know, my dad gave me the advice of you shouldn’t tell anybody at work that you’re sick; they might, like, fire you or not promote you. And I couldn’t do that. I felt that was not being honest.

It’s part of who I am now, and that’s how I live it. It was definitely a challenge. I think I mentioned earlier it was definitely a challenge telling my daughter. And one of the things I did was about four or five years after my diagnosis, we actually took her to a support program that was designed specifically for children here at MD Anderson.

I wish I had done that within the first three to six months. I think it would have actually allowed me to communicate better with her about my disease, and maybe she would have not been quite as worried early on. In telling family, again, I was just honest and upfront.

And one of the things that I did do that was helpful to me as part of that communication was some of my family wasn’t as financially able to travel as I was, to afford it. I paid for the plane tickets to come and see me, because I couldn’t get on a plane and risk being sick.

But having them come into town, making sure they washed their hands, proper hygiene, that kinda stuff, before they came in the house to visit me gave me time, you know, to relate to them and for them to actually be able to see that my treatments weren’t as big a deal as they were worried about. 

I mean, when you hear the C word, a lot of people are like, oh, my gosh, they’re going to be six foot under right away and that’s not true. So being able to see that that wasn’t true was actually helpful, both for me to show it to my family and for my family to be able to see that. So, you know, I think those were some of the communication things that happened.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on February 6, 2018