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Survivor Interview – Lynne R.

Lynne is a rhabdomyosarcoma survivor. She talks about dealing with the aftereffects of radiation, managing chronic cystitis, and preventing osteoporosis.

A young adult woman wearing a light purple turtleneck is interviewed against a white background.

I became a cancer survivor in 1986 after being diagnosed with rhabdomyosarcoma.

I was diagnosed at 16 when I was a junior in high school. I was treated with radiation therapy, surgery, and approximately a year and a half of chemotherapy. In my first semester of college, I relapsed and had another small tumor. I had surgery but not radiation, and I had another nine months of chemotherapy. I decided to stop early, because I didn’t think it was necessarily benefiting at that point. I’ve been surviving ever since.

I didn’t mean to say it wasn’t working. It was an experimental protocol — second-line treatment because I had a relapse. I wanted to focus on what was going on in my life. I was trying to be a college student, and it was really holding me back. At the time, I felt that quality was more important than quantity. There wasn’t enough evidence to prove that more chemotherapy was going to benefit me. There wasn’t any data to say you should be on it for a specific length of time. You get sicker and sicker as it goes along and some of the effects are not really repairable. They gave me the choice, “We could go further and treat you up to the maximum dose, which would be about 15 months, or we could stop now.” I didn’t want to create any more damage than I already had, so I decided that nine months was enough and I would roll the dice, so to speak.

It was a really hard decision. It was completely against my parents’ wishes, but I was over 18, so I could choose. When you’re in that situation, you need more care from your parents than you normally would. It’s hard to cut the cord. I went away to college but stayed in state and have always stayed around the Boston area. When you are 16, when you’re 18, and when you’re having reconstructive surgeries at 25, it always comes back to your family. Your parents are your primary caretakers during those times, and it’s not typical. It’s hard to be independent. I’ve had to really work to try to see myself as an adult rather than a child, especially when medical issues come up. It seems to be moving away from that, because now that I’m gonna be married, I have someone else to help me through those things.

I didn’t know until a few months after I was done with radiation that it would result in menopause, so I wouldn’t be able to have children. I didn’t realize it until I recognized the effects — hot flashes and mood changes and all those things. Not that anything could have been done. I think now they have ways to harvest eggs and things like that. But in 1986, they didn’t have that kind of technology. It was surprising and probably I’d have to say the major effect that the treatment had.

Up until my fiancé, my infertility had a tremendous impact on my relationships. Several of them ended for that reason alone. Determining when to discuss that with somebody has, for me, been trial and error. The older I got, the easier it became. It’s an intimate thing to have to discuss at the beginning of a relationship. At the same time, you don’t want to represent yourself in any false way by having them fall in love with you and then find out that you knew all along you couldn’t have children. It’s been a struggle, to say the least, but I happened to meet somebody who didn’t feel strongly about it. Maybe it has to do with being older. I’m 33, he’s going to be 36. When I brought this up to him, he was okay with it. We’ll just adopt children. So that is in the plan.

Osteoporosis is another factor of not having enough estrogen. That also goes back to not having any ovarian function. My bone levels have always fallen less than the mark for my age. They call it osteopenia. Now that I’m over 30, I will only lose bone. I take Vitamin D and calcium, and I do weight-bearing exercises to try to maintain the bone that I have now. It could be an issue in the future, which we’ll monitor with bone density tests.

I also had post-traumatic stress syndrome. A couple years after my relapse, I started to have very real dreams that I was sick again, that I had found a tumor, that I had somehow had been injected with chemotherapy by accident and my hair was gonna fall out. All these fears that probably had been bottled up came flooding. The dreams affected my waking daily life as well. If I had one, it was very difficult to focus on the day-to-day, like an exam or socializing. It was so real that it felt like I had actually just gone through a treatment. It took many years but they slowly diminished, and I don’t really have them anymore.

One thing that they’ve improved greatly in the past 15 years is the ability to protect your bladder while you’re having the chemotherapy. The radiation that I had between the first and second round of chemotherapy also did some damage, so that I have chronic hemorrhagic cystitis, which is having a lot of blood in your urine. I have many urinary tract infections. It’s gotten much better with time. At 15 years out, it doesn’t affect my daily life. But for the first five to seven years, it definitely did.

I don’t think I knew how much the experiences had affected me until a few years after the relapse. I didn’t have counseling during my treatment. I think that when I was a teenager in high school, I didn’t want to discuss it. I really didn’t want to acknowledge that it was even happening. In college, I certainly shared more of it, but didn’t get to the crux of the fears and traumatizing events that had happened. After, I eventually sought counseling for a few years that helped with the post-traumatic stress, and I don’t really feel any ill effects from that anymore.

I think fear over secondary cancers is really where I am right now. The chances of having a secondary cancer as a result of treatment increases over time, starting at about ten years out. With every year that goes by, I get more anxious. I’ve discussed it with my oncologist, whom I see yearly. It was her contention that we shouldn’t necessarily do follow-up imaging exams, because there are a lot of false positives and things that could lead to more testing, but never result in anything. We would just monitor how I’m feeling and look for pain, which would be the first symptom. That’s definitely anxiety-provoking. I’m still deciding whether that’s the way to go or not.

I advocate strongly for clinical trials for two reasons. One, because the experimental protocol I had was through a clinical trial through the National Institutes of Health. That treatment is now being used in some scenarios as first-line treatment. Second, as a result, that’s the industry I’m in. I manage clinical trials and advocate for them, because we get better medicines through people participating in clinical trials.

I can’t get any life insurance. I don’t think it matters how many years I’ve been off treatment. My health insurance was taken care of through Medicare disability for many years, especially after I was 18, because I was too old to be on my parents’ health insurance, I wasn’t working and didn’t really have access to anything else. I haven’t had any problem getting it through my job. I do think about it, because at some point, I would like to consult and would have to get my own health insurance. My husband is a consultant and uses my insurance. If we were both consultants or self-employed, I’d worry about what the premiums were gonna be.

I think if I could do things a little bit differently, I would say to try to use all the support you have when you’re going through it, especially psychological support, so it doesn’t come down like a ton of bricks later on. I always wished that I was more open about having been diagnosed during and after. It’s only in the last couple of years that I’ve been more open about it. I felt it was a little bit shameful, probably just because in high school, junior high, college, anything that separates you from fitting in is not a good thing. But at the same time, it’s empowering to share and to have it become a part of your daily life, so that you don’t feel like you’re living a separate life in your own mind. I don’t think the separation serves us. It should all be included in who you are.

Being a survivor is something that I look on as the finest battle I’ve ever fought and feel that it’s made me the person that I am today. I feel that I can handle a lot on my plate, because anything seems easier in comparison.

My name is Lynne Rudnick. I’m 33 years old, and I’m an 18-year cancer survivor.

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