Susan L.

Watch: Susan L.

I’ve been diagnosed with three different kinds of cancer. The first one started 31 years ago, in 1972, when I was first diagnosed with Hodgkin’s disease at the age of 24.

“We’ve cured you. What more do you want?” That was actually said to me at the age of 24 when my life was ahead of me. I had hoped to marry and have a family. A lot of young people’s hopes and dreams are to be able to have children. I sat in my room for three days crying after the physician said, “Well we’re going to start your chemotherapy and it’s going to make you infertile” and turned around and walked out of the room. So for three days I was very, very weepy and I couldn’t figure it out for myself. As a young adult, that was my greatest loss.

You can be a younger person. You can be an older person. You can be any age, and if you’ve had any kind of a gynecologic cancer where you had major surgery to the pelvic area, there may be real physical reasons why you may have problems with a sexual relationship.

As a young adult who lost my ability to have children because of my therapy, the internal scarring was so much more of a problem for me than the external scarring. And the internal scarring made tremendous differences in how I viewed myself and then presented myself when it came to relationships. If I was involved with a relationship, if I had a boyfriend, they didn’t care about the external scars. But how I felt about myself made a huge difference. I felt like damaged goods. I felt like an incomplete package.

Now we’ve got Fertile Hope, who’s trying to at least make this type of information available to people, so that they can start dealing with it, hopefully even before they start their treatment. But I think it’s an area where we really need to refer people to specialists and maybe sexuality specialists, so that they can identify whether it’s a physical problem, a psychological problem, a social problem or maybe a combination of all of them. And help people deal with it and find some kind of alternatives or at least some kind of resolution with what people will have to live with for the rest of their life. And not minimize it as being just a problem that anybody can live with because you’ve survived cancer.

I went into oncology nursing after (finishing my treatment for Hodgkin’s). And one of the things that I had seen over the years was that nobody was really paying attention to what was going to happen to us as we got further and further away from our diagnoses. So I got very involved in looking at long-term late effects. I was quite worried about long-term late effects. Then I was diagnosed with breast cancer in December of 1990.

Eighteen years after the original treatment and hearing that I had it again was such a shock and because I had been an oncology nurse for so many years; I know a whole lot about what the possibilities are. And I also know that we don’t know what happens to those of us who develop second malignancies. We don’t have much of a track record with that. I had a mammogram the year before that and nothing showed up, but I felt the lump myself, and I’ve never experienced panic like that in my life. I kind of dealt with the panic, got through it, and I knew that I had to do something and do something really quickly. So, boy, I was on the phone to my gynecologist office, and they said, “Oh, we can probably see you in three weeks.” And I said, “Oh, no. Today. Somebody has got to see me.” Even if my physician couldn’t see me, I needed to see somebody else. So they squeezed me in, I got in to see her late in the afternoon, she said, “Day after tomorrow I want you in the breast clinic.”

And then in Washington, D.C., I was in a taxi cab accident and fractured my pelvis. About six months later, my bladder problems were continuing to increase. They accidentally found carcinoma-cytes to the bladder. One of the things that I asked the physicians about is how much of this is actually related to the original therapy that I had. Certainly we now know that breast cancer, for those of us who were treated as Hodgkin’s survivors with such a huge amount of radiation to the chest area, is now an increased risk factor. They don’t know about the bladder cancer. They can speculate that because I did have some radiation to the abdominal area, that it may have scattered and set up a process of carcinogenesis that actually happened about 20 years after.

Another issue that survivors have is that our treatment options are going to be very different. I had already had a lot of treatment and could not then have the automatic lumpectomy radiation therapy like I would if I had not had treatment before, so ended up having to have a mastectomy, and I elected to have bilateral mastectomies. I did elect to have reconstruction, and in fact I had a tremendous difficulty healing because of all the damage done to the superficial skin from the radiation. It’s a slightly different health care situation than other people that have not had cancer before would experience, but we can get through it.

What they’ve learned from those of us who were treated back in the late ‘60s and early ‘70s as we have become long-term survivors is information that they turn around and improved the therapy that we had been given. So the physicians now tell me, “Gosh, Susie, if we had radiated you today, we would have given you so much less radiation. It would be so much more targeted than the huge area that they actually targeted back in 1972.” The chemotherapies have been improved so they decrease the risk of late effects, so just because I’ve come up with these, doesn’t mean that everyone who’s been treated nowadays or within the last decade will experience this. The chance of developing the kind of late effects that I have are decreased. They’re certainly much less than thirty years ago.

Hodgkin’s survivors have an increased risk of melanoma. I’m also from the southwest, so the southwest has the second highest incidence of melanoma in the world next to Australia, so we’ve got a tremendous sun awareness program. So I do wear sunscreen very religiously.

But on the flip side, I think what it teaches us is that we have to be really acutely aware of our health follow-up and what that looks like in the future. And lots of people have said, “Well, gosh, if you’d known that you were going to develop breast cancer from the original treatment, would you have taken that?” And I said, “Of course I would have.” It was the best that they had to offer me at the time, and I wouldn’t be around now to develop the other cancers or the other late effects if I had not taken that original treatment.

You go off therapy and so many people celebrate that last dose of chemotherapy, that last dose of radiation therapy. Meanwhile you’re a cancer survivor and all of the sudden you’re saying, “Why am I so terrified?” I am so terrified that this is all over because now I’ve got to learn how to be a survivor all on my own, and I don’t have that chemotherapy and that radiation therapy and whatever else is out there treating me, helping to keep all of this under control. So we go off therapy with such conflicting feelings where we are so thankful we don’t have to have it anymore, hopefully. Looking forward to a future that we may not be able to see that future much more than a week or a month ahead of time saying, “What is my future going to look like?” Learning how to really balance these fears and anxieties with a hopefulness of living without cancer. And it’s a very difficult transition for many of us, not all. Not everyone certainly, but for many of us.

I’m Susan Leigh, and I’m a 32-year survivor of Hodgkin’s disease, breast cancer and bladder cancer.

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