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The title of my talk is The Terror of Cancer. The View from the Other Side of the Hospital Gown. My name is Patty Jakel, I'm an oncology nurse specialist from Santa Monica UCLA and also I'm an associate professor at UCLA School of Nursing. I have been an oncology nurse for 36 years. I was diagnosed with stage 3 lobular cancer and that's why I decided to do this talk. One of the things that I learned along my journey with cancer was that having to wait for your diagnosis and your biopsy results can be very stressful. I didn't understand that I was actually doing what I was doing until I started looking at the theory. The theory, the praxis theory of suffering, and suffering is a response to a threat to one's psychosocial health by potential loss. There are two major states.
The first state that a woman waiting for her breast cancer biopsy would be enduring for preserving self. I found myself in this state. You're robot-like, you move around, you keep moving forward even though I went to work after I had my biopsy. I thought, what else would I do? Do I have to go home, what can I do? Women preserve themselves by moving forward. They care for themselves and others. They keep moving the caregivers at this point it was oncology nurses. You need to maintain a respectful distance. The last thing that a woman needs when they put up their wall, to be able to wait for their diagnosis, is to have empathy and sympathy. That's really hard, so as health care providers you should refrain from touching them and try not to be too empathic and sympathetic because that makes their wall come down and makes them fall apart.
We need to do this because it helps us deal with the next stage, which is the emotional suffering. I know when I got my final pathology back, I suffered. It was really difficult and we need to build our strength. That's why we preserve until we have the news and at this point you can comfort patients. They'll send the comfort me signals. It's appropriate to hold, listen and comfort them. Individuals move back and forth between treatment, when they start new treatments they may go back into preserving themselves or they may move forward in to more emotional suffering. What do we do to endure? Well, we rely on our families. Many people rely on their religious beliefs. I was big on the exercising. I kept going to the gym, even though I had just had a breast biopsy. I said, "I've got to go to the gym or I'm going to go crazy." Like I said, acting normal, taking care, going to work.
Then many people seek information. That was not something I did. I found it really difficult to go look up my diagnosis online. I can't even to this day tell you what the survival statistics are for patients with stage 3 invasive lobular carcinoma. Other people find it helpful to seek out the information. I was put on a clinical trial because chemotherapy wouldn't work for me because my KI67 was less than 10%. I was fortunate enough to get put on the neoMONARCH phase II trial, which was a CDK4 & 6 inhibitor, combined with anastrozole. I was able to do that for six months before I had surgery. Dr. Sarah Hurvitz reported out at San Antonio Breast Symposium this year that the CDK4 & 6 inhibitor reduced the levels of KI67 in hormone-positive hereto negative breast cancer patients. There's a correlation between reductions of the KI67 to improved outcomes. At this point it's a concept study, so there's no change in the standard, but we know that it does decrease the KI67.
Telling others, I went to this great website after I told everyone I had to tell, but breastcancer.org has so many great suggestions and it was right on for me because it's really hard, it's exhausting to have to go and tell people. My husband and I actually did create a plan how to tell our young adult children. That was very helpful. I used text messaging and email because I was worn out having to tell people and that's okay, I don't think some of my friends were happy to learn that way, but it really helped me. Help your patients understand that family and friends may not respond the way you want them to. Some people just ... they're not unkind, they just don't know what to say. They may look for reasons. One of the things I got is, "Well, why did you get breast cancer? How come you got breast cancer? You haven't had red meat in 35 years. You exercise all the time."
I couldn't answer that. I don't know and that's not helpful because I'm already in that state of saying, "Why me, why me? why me?" The clichés of be strong, stay positive. If anyone can handle it, it's you. That's not helpful because you don't feel like you can handle anything at that point. Remember, you have control over the information and I got really upset when people would go and tell other people without my permission. I always say it's my story to tell, so make sure I'm the one telling it. Some of the unsupported comments that I got along the way was one from a technician in MRI. She said, "We're rushing your biopsy because your MRI looks so bad." I didn't need to hear it that day when I was going in for the biopsy. I heard 100 times over my tumor was large, so 100 times over I heard because it's so large, and every time I heard that it was a knife in my heart.
You're so strong, you're my hero and the same technician when I went back in for the second biopsy while I was on the clinical trial, and she said to me, I said, "Oh my MRI looks really good." She goes, "Yeah, that's great because I really thought you were someone that would not do well." She was not a mean person; she just didn't have the ability to say the right thing. At that point I was the patient, not the nurse, so I didn't correct her and someday I have to go back and circle back to her. You're so lucky you don't need chemotherapy again. That was hard to hear. Then if I didn't tell people and I ran into them in the clinic, it was an issue. I had to have a mastectomy again because of the size of the tumor and I went to my medical oncologist and I said to her, "Why am I not doing bilateral?"
She peeled the paint off the wall with her very strong response to me. She said we are not mutilating women for unnecessary outcomes. I did not know that they were going to be published in the Wall Street Journal the following month talking about that, but there's an article that was in JAMA and it was a retrospective chart review on 1.2 million women. In 1998, 1.9% of those patients that had stage 1 and stage 2 had doubles. 2011, it was up to 11.2%. That's a pretty big jump and the study released in 2014 said that double mastectomy did not improve survival versus lumpectomy and radiation so again, her thought was we're mutilating women for no apparent reason. Part of that is the pink ribbon culture, there is more women that are younger, more sophisticated. There is a network out there so they talk to each other and of course the Hollywood effect is that implants aren't a bad thing anymore. This is the article that was in if you want to look it up. It's actually quite good.
The next stop after I had my surgery and I recovered really well. In five weeks I was back at work, was undergoing radiation. Radiation is not easy, it is difficult. You can be lonely; you can have anxiety while you're lying there. The side effects that I experienced afterwards were the profound fatigue. You can see this woman has terrible skin reaction, I also had that. I actually had nausea. Everyone kept saying you won't have nausea. I had nausea. The NCCN defines fatigue as persistent subjective sense of tiredness relating to cancer. 75% to 77% of breast cancer patients undergoing radiation experience fatigue. It is really bad. They're looking at the pathophys behind that as an activation of pro-inflammatory cytokines possibly. Treatment is to get up and move and that was hard for me to remember and actually in this photo I'm with my body pump class where I go every Sunday morning.
The pep cards for ONS has established that exercise is effective and it's hard to have a fatigued patient get up and move. The other upside of exercise after a mastectomy is it decreases the chance of lymphedema and I've been really fortunate. This is progressive weight lifting. I've been really fortunate not to have any lymphedema at all. The other problem that can happen with radiation, chemo and I happened to be on an AI, is cognitive impairment. I used to be kind of smart. I've lost some of that along the way. 70% of patients on the LiveStrong survey said they suffered from chemo brain. You can rehabilitate yourself with this brainHQ.com and it gives you exercises to help with memory. On the aromatase inhibitor that I have cognitive impairment is very apparent. There's non-adherence in 60% of the patients because of the side effects of that and we know if you stop taking your AI in less than 10 years, you're going to have problems.
I have to say that the inhibitor, the joint and bone pain I was not prepared for. I feel 20 years older than I am getting up and down. There's a recent study that was through ASCO that Cymbalta actually helps with the joint pain. I have not tried it yet, but I can tell you when you talk to your patients, let them know that joint and bone pain can be a problem. The last elephant in the room is the fear of recurrence. It's not something we have a lot of good research on. Patients find themselves insecure, isolated, afraid, they feel abandoned and I can’t' tell you how many times patients have finished chemo for lymphoma, for sarcoma and I'd say, "Now go do good things. You're past this. Go live your life." They don't really want to hear that. They feel like we abandoned them. 40% to 70% of the fear can be chronic and disabling. It can affect many parts and they don't feel like they can discuss it and I understand that. I have not discussed that with anyone.
Getting back to work after I'd been through all of this, survivorship care is really important. To help us manage the side effects of treatment, for me the longer term concerns are for cardiac and bone health, obviously the AIs decrease your bone health. Cardiac because I was irradiated on the left side. We help promotions and emphasize the benefits of an active lifestyle and we should support that. Being back in the saddle means you have anxiety. Newly diagnosed people said 50% of them had severe anxiety. Chronic anxiety in 30% of patients after they've had the diagnosis of cancer and Nancy Jo Bush presented on this a couple of years ago at ONS and PTSD is a problem for people with cancer. It's complex, it's a chronic disorder. It's usually triggered by a traumatic event. Childhood traumas are identified as a risk factor so we as health care providers need to make sure because having cancer and cancer treatment can definitely trigger PTSD. I like this quote, it says to conquer fear is the beginning of wisdom. I'm conquering my fear.