Patient-to-Patient Advice: Self Advocacy and Education
Francisca Bellard: I know, Ms. Sylvia, that we’ve both talked about difficulties we’ve had getting treatment and finding doctors who even have knowledge about our cancer.
Sylvia Lubrano: Right.
Francisca Bellard: Would you like to share some of the challenges that you’ve had in particular with just seeking treatment?
Sylvia Lubrano: Oh goodness, yes. To seek treatment, it’s very vital, first of all, that we find a specialist in our disease. I’m sure you’ve experienced that. I always say that I have too many ologists; I wish I could get rid of some. I have a few less ologists now that I found the right doctors. I feel that way. It’s just been a long journey getting there because some doctors I found were honest and they would just say, “I don’t know” or “We don’t know where to send you” or “I’m not sure of this or that.” Yet when we go to a specialist, they know what to do with us, and I feel comfort in that.
Francisca Bellard: For myself personally, patient advocacy—being able to advocate for yourself—has been a huge gift that I’ve learned to do for myself. So many times the doctors would say, “Oh, well, we’re going to put this stent in you or this different injection in you.” I actually had to stand up for myself and say, “You know, I read up a little bit and I don’t think that that’s the best way to go about it. I see that this stent can cause occlusion and I could have problems.”
Sylvia Lubrano: In your way, it seems like you had the shorter journey to diagnosis. Like you said, you only felt sick for a few weeks. But look how amazing your story is from that point on as compared to mine. Mine is the longer journey, the more common of the rare—except I’m wondering, is it really so rare? I think there’s just maybe not enough education in the medical community.
Francisca Bellard: What I’ve actually found is that it’s not just, “Well, I have neuroendocrine pancreatic cancer and you might have neuroendocrine small bowel cancer.” They may have neuroendocrine intestinal cancers in that gut area, but you can get it all over your body. There are more and more cases that are being discovered and found.
Sylvia Lubrano: Every day.
Francisca Bellard: It seems to me as a patient that it’s sometimes, “Oh, well, you have pancreatic cancer,” unless you know there are different kinds and you ask that person, “Which kind of pancreatic cancer or intestinal cancer or small bowel cancer?” Unless they know that, then you’re not really getting the help you need. You really have to ask, “Is there a subset of that and is there a specialist of that?” That’s what I found.
Sylvia Lubrano: I did too. It’s very important to be in the right place.
Francisca Bellard: Is there anything you wish you had known before all this started that could have helped you deal with all the stuff that has happened with your cancer?
Sylvia Lubrano: Yes, because in 1999, I knew nothing. I didn’t see the importance of knowing what we need to know now to take care of ourselves and just to live. With the journey being so long, just finding the right person is frustrating. But in 2010, I had a hysterectomy, a total hysterectomy. It was only a few months, less than a year. I had that surgery in July of 2010, and in 2011, I had my big surgery because by then I was stage 4. It was all over my liver and everywhere in between, on my small bowel and everything. It’s frustrating. I wish I had just known to even tell my gynecologist that I had had these symptoms. He went inside of me. He didn’t even know. I guess he wasn’t looking for that. I just wish I had told my symptoms to more doctors. I did, but maybe not to the right ones or not to all of them.
Francisca Bellard: You felt like there was no communication.
Sylvia Lubrano: Yes, I couldn’t fit the puzzle together or get the doctors to help me fit the puzzle together. I didn’t realize things were connected so much, and that’s how I felt.
Francisca Bellard: I completely understand what you say, and I also want to say thank you because you’ve set the stage ahead of me so that my journey could be shorter. People like yourself, who are going out and going through all of these different scans and getting all of these things done to figure out what does and what doesn’t work. I had that ability now to just walk in, have the shorter journey, and say, “OK, well, this doesn’t show up and this doesn’t show up.” But if you hadn’t of gone through that, I wouldn’t be able to be sitting here and talking to you.
Sylvia Lubrano: Well, I’m so glad that I could help you in that way. We’ll just have to stay educated.
Francisca Bellard: Yes, ma’am.
Sylvia Lubrano: What will the years bring? Just more and more good.