Talk Shows & Stories : After Treatment and Beyond : Ovarian Cancer, Female, 35-45, After Treatment

Ovarian Cancer, Female, 35-45, After Treatment

Recorded September 12, 2001

Welcome and Participant Introductions

Dr. Harpham:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking with three women from across the country. All three are survivors of ovarian cancer. They are between 35 and 45 years old and have completed their cancer treatment. As a Doctor of Internal Medicine and also a ten-year cancer survivor myself, I am pleased to be your host for today's conversation as we talk about; the role of stress in your cancer experience, returning to work after a long absence, dealing with issues of infertility, getting information about treatment-induced menopause and feeling confused about your future. Before we open up the discussion, I would like to briefly introduce our guests.

Our first guest, Annie, joins us from Ohio. In 1998, when she turned 40, she changed gynecologists and then talked with her doctor about her mother's ovarian cancer. Annie, at the time, was experiencing fatigue and low back pain, but thought it was due to a lot of stress at work. The doctor recommended a baseline ultrasound and a blood test called CA-125, which was abnormal. After further tests and surgery, she was diagnosed with ovarian cancer. Annie underwent a radical hysterectomy, followed by six months of chemotherapy. The pathology report indicated, in addition to the ovarian cancer, a bit of endometrial cancer. Annie is now 43 years old and married with no children. Welcome, Annie, to the discussion today.

Annie:
Thank you.

Dr. Harpham:
Glad to have you here.

Annie:
Thank you.

Dr. Harpham:
Next, I would like to welcome Susan, who lives here in Texas, where I live. She feels she was very lucky in early 2000, because her cancer caused her some pain. She went to the emergency room with severe abdominal pain that the emergency room physician initially felt was just cramps. Susan insisted on a sonogram, which showed a twisted, enlarged ovary. She was taken to surgery where the diagnosis of ovarian cancer was made and a total hysterectomy was done. This was followed by months of chemotherapy. In retrospect, she realizes that it might have been diagnosed even earlier because a doctor had felt a lump the size of an orange during a pelvic exam, but thought it was her uterus. Susan is 37 years old and single. Hi, Susan. Thanks for being with us today.

Susan:
Thank you for having me.

Dr. Harpham:
Our third guest today is Carol from New York. Carol is 47 years old and married with no children. She was diagnosed with a stage one ovarian cancer in the fall of 2000, being one of the few ovarian cancer patients who had symptoms with early disease. She was treated with a complete hysterectomy and oophorectomy, which means they took the uterus and the ovaries and the removal of some nearby lymph nodes. Hi, Carol. We are glad to have you in our discussion today.

Carol:
Hi. Thank you. Glad to be here.

Dr. Harpham:
Well, let's open up today's discussion by talking about stress. Cancer is stressful; facing your mortality, dealing with the rigmarole of treatment and follow-up, dealing with side effects such as fatigue and dealing with everyone else's reactions to your illness. In addition, normal life doesn't stop. Patients still have to deal with work and home responsibilities.

Annie, you were 40 years old and had a demanding job when you were diagnosed with ovarian cancer. Can you share with us some of the stresses you felt after your diagnosis, during evaluation and treatment?

The Stress of Cancer and Working

Annie:
It was really rough. My administration was not very supportive.

Dr. Harpham:
At work?

Annie:
Yes, at work, and things of that nature that just made it hard. I went to work to take my mind off of it. But still, after the diagnosis, the surgery, and things of that nature, it was like I was expected to pick up the reins while I was off and to tell them what I was doing. Which they didn't want to find out before I went into surgery because at the time, it was unknown if I definitely had cancer or not. It was just bad going all the way around. There were some supportive people at work I could call upon and they would help me out.

Dr. Harpham:
When you say you felt stress, for instance after the diagnosis, when you knew you had cancer. What did that stress feel like? How did it affect you?

Annie:
It was just an overwhelming kind of thing, kind of wondering, well how far did this cancer progress. Because my mother's was a stage III and I ended up being a stage I, probably nearly a stage II, but it stayed a stage I. Just a lot of fear, a lot of kind of wondering what was going to happen to you. Could I go back to work under the same stressors that I was experiencing? Not having children, that was probably another stressor because that definitely cut my chances there. Just different kinds of things that you kind of wonder about that just kind of created the stress for you.

Dr. Harpham:
So you had lots of big life questions.

Annie:
Mm-hmm [yes].

Dr. Harpham:
Now, tell us a little bit about your stress at work.

Annie:
Being yelled at prior to even knowing that I even had the cancer because I was feeling very tired. I could be sitting in a conversation with somebody and I could almost fall asleep. Just lots and lots of job duties..I mean, just an overwhelming amount. It was like; we will give it to her because she can do everything. I felt like I was being super woman. I think they expected me to be there [laughing] twenty-four hours a day seven days a week, because I had no children. I felt like that was, in a sense, a discrimination. Nobody else kind of felt that way, but I felt that way, that I can devote all this time to this job because supposedly I had no family at home to take care of.

Dr. Harpham:
So how did you handle the stress?

Annie:
After my diagnosis and when I was starting to do chemotherapy, I went to a support group. They used to be part of the Wellness Center. They are Victory Center now and that's where I really started to understand what I needed to do.

Dr. Harpham:
What did you learn?

Annie:
Basically, how to take care of myself, that it was okay to say no. That if I wanted to survive, I had to start putting my needs first in a constructive way, not in a negative way. And I just couldn't be there for every single thing for everybody..thinking that I could do everything. And, at the same time your health suffers.

Dr. Harpham:
Was that a hard change for you, Annie?

Annie:
Yes, it was. Mm-hmm. Because somebody mentioned that the cancer profile tends to be the people who are--who want to please everybody. And they will please everybody at their own cost, of not thinking about your own health and your own needs and that type of thing. So, it's like a 180-degree reverse, or a 360-degree reverse. It was once you kind of get started, then you felt a little bit better about it.

Setting Priorities in Order to Cope with the Stress

Dr. Harpham:
Can you give us some examples of how you put yourself first?

Annie:
I ended up having to write a letter to my employer, actually my supervisor, and I cross-copied it to my other supervisor, and said that I am not going to be at your beck and call. I am supposed to be here taking care of myself during my chemotherapy. I am sick all the time, and even when I start to feel well, I am going right back into treatment. It's just a back and forth kind of thing. And, I said if you want to call me on certain days of the month, I would be glad to help you out for about 45 minutes, but that was it.

Dr. Harpham:
So you laid out hard and fast rules--guidelines for your coworkers.

Annie:
Uh-huh [yes]. For my supervisor primarily.

Dr. Harpham:
How much did you think any of their hostility or difficulty with your illness was related to their fear of cancer or what cancer could mean?

Annie:
I think my immediate supervisor just didn't care. He just wanted to get the work done and that was the end of it. So what if you were sick. The only thing he probably..the fleeting thought..was probably I had the flu. I think that was the way it was taken. That was my perception.

Dr. Harpham:
How do you handle stress now?

Annie:
I make sure that what I can get done is what I get done during the day. I don't bring a lot of the work-related problems home, and I find other things I can do to take care of myself and to enjoy life. I think that was probably what was going on, is that I wasn't enjoying life any more [laughs] before, when I was starting what I know now were the symptoms.

Dr. Harpham:
Uh-huh.

Annie:
I felt like I was always in a fight stage. You know, fight, fight, fight, fight because you got to get this all done, so that way you can [laughs] be ready for the next day. [laughs] And then you've gone back to the same thing all over again. And I never really slept well. I think I was catching it from both ends all the time.

Dr. Harpham:
So, if anything, after cancer you feel you handle stress better than before.

Annie:
Right. And even to the point where I have to, sometimes--and when I say confront, I use it constructively--sometimes I have to confront people and say, "No, I can't do it. My plate is full, unless you want to take something away and you want me to do this in its place".

Dr. Harpham:
Well, we'll come back to that. Susan, you were 36 years old when you were diagnosed with ovarian cancer. Can you share with us some of the stresses that you felt during your treatment?

Susan:
I had a lot of the same stresses that Annie did. I am single, so I need a paycheck. And while I didn't have the pre-diagnosis stress that Annie did because I was diagnosed suddenly. I went to the emergency room one Sunday morning, but the diagnosis was sudden. And I, too, received no support from my employer. I don't, like Annie, think it was malicious. They just cared about the job.

Dr. Harpham:
Uh-huh.

Susan:
You know, who is going to fill her job? How long are you going to be out? They weren't treating me like a human. They were just treating me like a worker. I happen to be in computer programming where telecommuting is an option. I can write code and solve problems just as easily from home, as at work, and plenty of the people in the group already telecommuted. I didn't at the time, but what I had to do--I kept asking. The day I got home from the hospital I asked her that because I, too, wanted to get my mind off the cancer and continue my paycheck. Both reasons were equally important. I really did want to focus on something else and get back to normal. But the managers wouldn't return my phone calls. I wasn't getting answers for human resources type of things, about medical leave and all that. What finally got a response is when I had my oncologist fax a letter saying I had a medical need to work at home because when you are in chemo you are immune-compromised and all of that.

Dr. Harpham:
Mm-hmm.

Looking for Support in the Right Places

Susan:
And at the same time, I mentioned that cancer is covered under the Americans with Disabilities Act. Then within 24 hours there was someone in my house with a PC, so I could work at home. Now, I can't say cause and effect was there totally, but, you know, when weeks nothing happened, until I finally mentioned there is a Federal law..

Dr. Harpham:
Right.

Susan:
..and then something happened. I know the people involved and I have to believe that's what happened. And these are..talk about stress, I was in the hospital suddenly diagnosed, totally out of the blue..

Dr. Harpham:
Right.

Susan:
..with cancer, no history in my family, two days after my 36th birthday and I am told I can't have kids. They didn't know how bad it was. And at that time and a postoperative infection, I might add, and my boss sends in the secretary to sign medical leave papers.

Dr. Harpham:
Right.

Susan:
You know, at that point..that's stress! [laughing]

Dr. Harpham:
What did the stress feel like?

Susan:
Well..

Dr. Harpham:
How did you feel when you were stressed?

Susan:
Well, like I had to do something. Actually, my mother flew in to help me during chemo. She saw it. I didn't even realize it. Every time I'd get off the phone trying to talk to my boss, trying to get answers and resolve the work situation, she would see, as soon as I'd hang up the phone, I'd be in pain. There was a total connect with physical pain and emotional duress. And I didn't realize I was doing it, but she noticed. Every time I talked about work, I'd start reaching for the Vicodin, and just all my chemo symptoms would be worse. So I dealt with stress by getting information, calling Washington and finding out my rights, like the ADA--I didn't know that before cancer--and fighting with information. They did do the right thing in the end, but only after I did my homework. So, I dealt with stress by trying to do something about it.

Dr. Harpham:
And there are lots of people who can help you. The National Coalition for Cancer Survivorship [editor's note: www.cansearch.org] has information and people who can help cancer survivors find out about their rights at work.

Susan:
Mm-hmm.

Dr. Harpham:
And as you say, information can be a tremendous benefit, when dealing with stress after diagnosis.

Susan:
Yes, I found out there was a lot of help all the way around.

Dr. Harpham:
Now, you had lots of other stresses, too. There were just the practical stresses of balancing your work and balancing your treatments. How did you deal with that?

Susan:
Well, that's where once they started cooperating, I guess, maybe, when I came back to work and it became real. I don't know. But, after I got the PC, they were cooperative in giving me work that could be done any time. In other words, I could take off the day to do chemo--they gave me projects where I can work on my own timetable. I can work at night from home.

Dr. Harpham:
Okay, so flexible scheduling was an important stress reducer.

Susan:
Absolutely, so I can do some of it from home. Yeah. They switched my assignments to get me off a high-pressure assignment I was on, to doing something that had a little more--I could do it at my own pace. It needed to be done, but they cooperated that way, which helped quite a bit.

Dr. Harpham:
Well, thank you for sharing that. That is very useful information. Carol, you were 46 years old when you were diagnosed.

Carol:
Yes, that's right.

Dr. Harpham:
Can you share with us some of the stresses you felt after diagnosis and during treatment?

Carol:
Well, let's see. My diagnosis came, oddly enough, after a hysterectomy. I had had a pre-cancerous condition for uterine cancer, and I had the hysterectomy and they took out the ovaries at the same time. And it was afterwards, while I was trying to recover from the surgery that we found out that I had ovarian cancer. So, I had several weeks where I was trying to recover from the surgery and gear myself up to go in for more surgery, so it could be staged.

Dr. Harpham:
Right.

Carol:
And that was extremely stressful. And it wasn't really made any easier because, you know, here I am recovering from the one operation. I couldn't move very much. I mean, they get you up and walking around, but you are pretty well confined to the house and to very limited range of activities.

Dr. Harpham:
Uh-huh.

Carol:
And basically all you have to do all day is think about it.

Dr. Harpham:
So, not having something to do made it more stressful for you?

Carol:
Yes. Not having something that I actually needed, that I had to. So, you know, it might have been different if I had children. It might have been different if I'd had the kind of job that I had to leave the house for and go out and do things. I wouldn't have been able to because I was still recovering from the hysterectomy surgery, and was not really in any condition to go to work.

Dr. Harpham:
You know, people say to me, "Well, I felt stress." Can you describe for me what it felt like when you were stressed?

Carol:
Well, at that point, I often I felt like I couldn't breathe. It was just hard to breathe and there was this tremendous weight on my shoulders. I just felt frustrated. I felt angry. I felt scared. And I felt all of them at once, and I just didn't quite know what to do with any of it.

Dr. Harpham:
What did you do?

Carol:
Well, I didn't..it was only after the second surgery when I was staged and when I found out that it was, in fact, only stage I, which was a tremendous relief.

Dr. Harpham:
Right.

Carol:
I still had recovery ahead of me. And it was at that point I started looking outside in my community for something else, something that might be able to help me. And I found an organization called Gilda's Club, which is like a wellness community. It's just a center for people with cancer and their friends and families. It's a free group and they have a variety of activities. So, I started doing yoga and doing a few arts and crafts that just sort of took me out of the house and took me away from myself, and that helped enormously.

Dr. Harpham:
So creative activities and relaxing exercises.

Carol:
Yeah.

Dr. Harpham:
That sort of thing helped your symptoms of stress?

Carol:
Yeah.

Dr. Harpham:
And, what about your husband? How is this affecting him and your stress?

Carol:
My husband--how can I say this? My husband is wonderful and he was very supportive through all of it, but there is a certain amount of emotional things that he just doesn't get. So, I know that he was stressed, but he wasn't admitting to it himself. He also felt that he had no idea what he could do or what he was doing for me that would help me. So, sometimes it was hard to get him to show the kind of support that did help. Just because he couldn't believe that, for instance, just sitting there and holding my hand was helping.

Showing Loved Ones How to Support You

Dr. Harpham:
Do you think that your husband's role in the new diagnosis and beginning treatment made things more or less stressful for you?

Carol:
Oh, I think--I think it depends. A little bit of both, actually. It was very stressful to feel that I had to tell him what to do. You know, there was a point at which I had to tell him, "I need a hug. I need you to come to the bed. I need you to sit down next to me and give me a hug, not just lean over." And, you know, kiss me on the forehead or something like that. And it was at one point, I just started crying and screaming that I couldn't take it and that actually felt wonderful. [laughing] That helped a lot.

Dr. Harpham:
So, just letting it out and not trying to be calm and polite.

Carol:
Right.

Dr. Harpham:
But, just letting it out.

Carol:
Right, right.

Dr. Harpham:
Sniffly nose and the pouring of tears helps.

Carol:
Yeah, and just all of it. Just let it out and not try to be brave, not try to just get through it. But, to just kind of fall apart emotionally. That was great, learning that I could do that and then still go back to myself and that it didn't really change anything important, except it just made me feel better.

Dr. Harpham:
It relieved you..

Carol:
Yeah.

Dr. Harpham:
..when you told your husband what you needed to help you, to help your stress.

Carol:
Yeah.

Dr. Harpham:
How did he respond?

Carol:
Well, he always tried very hard; he always does try very hard to do what it is that I have asked. But sometimes he is just a little diffident because he's--. By the time that we were through with this experience, I think he really did believe that just being there relieved me of some stress; that his physical presence was just helpful. But I think at the beginning he didn't.

Dr. Harpham:
But, you know, we're not born knowing how to be patients. And we are not born knowing how to support someone we love..

Carol:
Right, right.

Dr. Harpham:
..through a very frightening experience.

Carol:
Right, right.

Dr. Harpham:
So, your point about teaching your loved ones and your friends what you need is very valuable. And the other point is that different people need different things.

Carol:
Right.

Dr. Harpham:
And that the same person; one person needs different things at different times.

Carol:
Right.

Dr. Harpham:
So open communication is extremely valuable.

Carol:
Right.

Dr. Harpham:
Now, did your husband ever talk about his stress?

Carol:
No, not to me. He would say things that I would recognize it indirectly, I think. For instance, he would come home from work and say that he had been talking to somebody who knew somebody who had a similar situation or something, and had been reassuring in this way. After the hysterectomy, that his secretary or his manager's secretary had said that she'd had a hysterectomy and it took her two months to really have energy after it. So the fact that I had no energy after six weeks was perfectly normal and it was fine. You know, I could see that he had been worried about that and that he was relieved, but only because he was telling me--basically he was telling me how he'd dealt with it.

Dr. Harpham:
Looking back, you know, you've been through it. Now, Carol, looking back, is there anything you wish you had done differently as far as dealing with your stress or dealing with your husband's stress?

Carol:
I think I was impatient. I think I really wanted to get better. I was having a lot of trouble accepting that this was going on because my diagnosis of cancer came pretty much after the treatment for it, you know? I had the surgery first and then I had the diagnosis and then I had the staging. It was kind of weird.

Dr. Harpham:
Right.

Carol:
And I felt it was hard for me to just let myself be and let myself react to that. I kept thinking; well, I should be doing this or I should be doing that, or why can't I do this, and I really need to get back to work, and I couldn't. It was as though I felt, if I couldn't do it right then, I was never going to be able to do it, but I was wrong.

Dr. Harpham:
And how did you learn that you were wrong?

Carol:
Because after time, beginning to do other things helped me to some extent. But over time, as I healed, the energy did come back. It came back slowly, but it did come back. And interest in other things did come back and I eventually was able to get down and concentrate on the things that I wanted to do.

Dr. Harpham:
Has your method of handling stress changed since your cancer diagnosis?

Carol:
Yes. Yes. Certainly, I give myself more space and don't worry about it. At some point in the cancer, I was stressing about being stressed, if you will.

Dr. Harpham:
How ironic.

Carol:
[laughing] Isn't it? But, I hope you understand what I mean.

Dr. Harpham:
Absolutely. There is actually a big comic that says that.

Carol:
Yeah. But, so now I am not stressed about being stressed. If I am stressed I am just stressed and that's that. But, I really found that learning to do relaxing things and to give yourself the space and the time to recover from a situation, that that's really important.

Dr. Harpham:
Well, when I opened up this introduction, my first sentence was, "Cancer is stressful."

Carol:
Yeah.

Dr. Harpham:
And sometimes we try to make believe it isn't, and recognizing that cancer is stressful, I think, is a good starting point for dealing with the stress.

Carol:
I agree with you.

Susan:
This is Susan. I have a comment to add about that.

Dr. Harpham:
Please.

How Caregivers Deal With Stress

Susan:
I feel that, in my case anyway, because I was diagnosed in surgery, and after the surgery, as Carol and Annie both know, that's major surgery. So, you are pretty laid up, and I was personally in the hospital for nine days and had morphine. I didn't feel--I was kind of numb to it. I felt all along like it was way harder on my parents than on me. It was almost like there was nothing I could do about it. Doctors were taking care of me. But it was my--you know, I'm not married, so my parents took over. But I felt like it was much, much harder, especially on my mom and those around me than me, because I was too numb and it was just so out of my control. The more I learn about others..

Dr. Harpham:
And it is so important for patients to realize that this is very stressful and in some cases more stressful for the friends and family watching this unfold.

Susan:
I feel it definitely was, especially for a mother.

Dr. Harpham:
Did your parents talk to you about it? About their stress?

Susan:
No, my parents are not talkers. I would catch my mom crying in another room. She wouldn't do it in front of me. She would do things..like I would be in chemo and not hungry and I would tell her "I'm not hungry," but she would constantly make me little cut-up apple and bring it to me, because that was all she could do. I was lying there in pain and that was all she could do was make me food, even though I wasn't hungry, and try and get me to eat it, even though I didn't want it. I could just see the helplessness in her and the fact that she never took off work. She is a workaholic, but she took the time to fly from New York to Dallas to take a week to be with me that week after chemo, every time.

Dr. Harpham:
Mm-hmm.

Susan:
And one week she happened to be sick and she couldn't be around me because if you're sick you can't be around immune-compromised people..

Dr. Harpham:
Mm-hmm.

Susan:
..and she couldn't come down, and she cried. So, I could see the stress on her. It was worse on her than on me. I guess because she felt like there was nothing she could do.

Dr. Harpham:
What did you learn about responding to your loved ones' stress?

Susan:
I let her know that it was okay, that she didn't have to try, and that I understood. And I really had to--because sometimes when you're tired, for lack of a better word, your temper will get to you. You are just so tired, like people calling and asking, "How are you? How are you?"

Dr. Harpham:
Right. Right.

Susan:
There were times when I was just so tired, I was literally sick of the question. But I had to remind myself, I should be glad this many people are asking me how I am. So, I just reminded my mother she didn't need to be doing--I appreciate, I know what she is trying to do. I know why she is doing it, but I didn't need food. I didn't want food. Please just let me sleep. [laughs]

Dr. Harpham:
Well, again, this idea of outlining for people what you need. Being direct as a way of saying, "This is how you can help me."

Carol:
Mm-hmm.

Susan:
This is Susan.

Dr. Harpham:
Okay Susan. Go ahead.

Susan:
They want to help and they are taking their best shot at figuring out what it is to help. Yeah, I think you're right, because once I told my mom, "Please just let me sleep, that's what I need, that's what you can do for me." She was just taking her best guess at what needed to be done. The motives were there.

Dr. Harpham:
So, giving directions helps everyone's stress?

Susan:
Actually, yeah. I think so.

Dr. Harpham:
Now, Susan, how did you deal with all the phone calls or people coming by to visit, that sort of thing? The stress of taking care of everybody's need for information?

Susan:
Well, that's where if I was alone, I just wouldn't pick up the phone. I would let the answering machine and I would try and just take the call and just say, "I'm sorry, I need to sleep. I'll call you back when I can."

Dr. Harpham:
And you were honest.

Susan:
And that's where I used my mom. When my mom was here, I let her run interference. [laughs] Instead of cooking for me I said, "What you can do is just answer the phone and tell them I'm okay and I'll call them back when I can."

Dr. Harpham:
Carol, what did you do?

Carol:
What did I do? I didn't actually have that many people calling. I have a small set of friends and they would call periodically, but I think they really went out of their way not to be too intrusive. It isn't that they didn't care, but I don't think that they called me quite so often that I was bothered by it.

Dr. Harpham:
I want to continue talking about stress, but I want to shift the focus a little bit. Many people read and talk about the role of stress in the development of cancer. Although stress, especially chronic severe stress, can affect the immune system, there has never been any scientific evidence that stress causes cancer. Yet, many people, patients, feel worried or guilty that the stress in their lives before their cancer diagnosis somehow led to the cancer. Annie, at any time did you feel that stress played into your cancer diagnosis, or into your survivorship?

Annie:
Yes, I do. I think my cancer resulted from my stress. I remember something being said in our group that when your immune system is functioning properly, technically, everybody is born with abnormal or cancer cells, it depends on how well your immune system attacks those and kills those. I think at some point in time when my immune system was compromised, I think that's when you get sick. And if you are not bouncing back as you should be, and I think if you are in that constant state of fight or flight, I don't think the immune system ever recovered. I think that is what played so much into my--my mom used to blame herself that she gave me her cancer. That's supposed to be, you know, the genetic link. But, I keep telling her that my oncologist does not think it was genetic, and I really truly believe it resulted from the stress I had at work. I have never felt so stressed as I had been in this particular job that I hold.

Dr. Harpham:
Mm-hmm. Now, how do you think stress plays into your staying in remission?

Annie:
Again, I just make sure that I only take on what I can handle. I got rid of some things when I went back to work, even though I had to fight in order to do it. I even almost had to claim a discrimination suit at one point in time. My union person helped me out on several things. I basically--what I would do is; I would never enter the front doors of the office where I would have to see my supervisor, I would always go in the side door. [laughing] So I would never have to see that person. Then when I went to talk with a person or whomever I had to see, that's when I had to get my question answered. I did not go out of my way and basically I think that was their final year; this person was going to retire. And the person I work with now is very good. I think the personnel you work with; I think it helps things a lot.

Dr. Harpham:
Well, I am going to talk with Susan and Carol about stress and the development of cancer, but I want to interject first and emphasize that this is a question that has been looked at and is being looked at by the scientific community. And there has never been scientific proof of a "cancer personality" or again that stress causes cancer. Stress does affect the immune system. The immune system is related to illness, including cancer, but when looking at people who have equally stressful lives, many of them don't develop cancer. And there are many cancer patients who were very happy, very content with their lives before their cancer diagnosis, and it is important to realize that this is not a one-to-one relationship. And I think making that distinction between stress--feeling that stress causes cancer versus that stress plays into, quality of life plays into your overall health, is an important distinction.

Carol:
This is Carol.

Dr. Harpham:
Go ahead, Carol.

Carol:
I just wanted to ask Annie something. When you feel that your stress is what contributed to your cancer, how does that make you feel? Does that make you feel guilty, or do you feel as though having that insight makes you more able to do something to try to prevent relapses? Or how does that make you feel?

Annie:
I think, like you have mentioned, being more cognitive or aware of what's going on and that type of thing; that I would be constantly dumped on with lots of duties and stuff. Every time I walked by "Oh, here's something for you to do, here's something for you to do," and it was just adding and adding and adding and adding. Now I realized that I don't have to do all that stuff.

Dr. Harpham:
You have a choice.

Annie:
Mm-hmm [yes]. That there are choices. Well, and that I can choose to leave at my ending time. I don't have to stay a half an hour to an hour after my stay-time, just to catch up with everything or whatever has to be. And that I didn't have to do certain activities. I was burned out from doing one activity. That's the one I had to fight to get out of. I was tired of it.

Dr. Harpham:
Yeah.

Annie:
And I just felt it would be better off with somebody else. But this person had to make a choice of letting it go and that was a little bit hard for that person to fight. The other person that--this seems to be the old boy's network in this whole thing--and it seems as if the women are the caretakers and the guys can basically do [laughs] while the women will always pick up the slack because we are the nurturers. I'm not trying to be gender whatever, but just more conscious that I don't have to fall into that, all the time.

Carol:
I guess it made you feel that there was something you could do and made you realize what you could do.

Annie:
Mm-hmm [yes]. I think it goes back to knowing your rights.

Carol:
Yeah.

Annie:
Like, I looked at the ADA and things of that nature and knew about 504--that's the Rehab Act--and stuff like that. I didn't have to do all kinds of things. And I can ask my doctor to write specific things in order for them, to some extent, accommodate me; which was no financial hardship. That I didn't want the undue stress.

Carol:
Okay.

Dr. Harpham:
Now, Susan, what about you? How did stress play into your diagnosis or survivorship?

Susan:
Actually, I feel relieved that someone else feels the same way. I don't feel that stress causes cancer, but I do feel it contributed to mine. Kind of like some people can drink and never get an ulcer or liver disease, but some people do. I have no genetic link to it. I, too, hated my job to the point where I would go home and, not to be graphic, but vomit. So that meant that stress was physically..

Dr. Harpham:
Affecting you?

Susan:
Affecting me, for sure. I mean, upset stomach, and I dealt with it. I couldn't get out of the job at the time, because of the economy and finding another job of comparable pay and all that. So what I did to divert my anger somewhere else is; I took classes every night 6 to 10, sometimes weekends. I literally, I felt like I ran myself into the ground. It certainly had to compromise the immune--it must have had a hand in it. It certainly couldn't have helped, and when I ended up getting sick and landed in the hospital, part of me felt relief in a strange way. I almost feel like I came out ahead on the deal even though I lost some important things. It gave me permission to myself to, like the other ladies have said, I leave work at 4. I am not going to stay late. I am going to focus on what's important in life.

Dr. Harpham:
But after cancer, you felt you had a chance to make choices about the stresses in your life?

Susan:
Yes. And it puts what's important in perspective; my family and friends are more important than any job. However they are treating me; that's not important in the end. It's your friends, not your job. It's your relationships that make you, as a person, and it put that at the top of my priority. They just don't get to me. They are still doing the same thing, but I just will not let them control me that way. If someone makes you angry, they are controlling you, and I am not going to let that happen any more. So, the cancer did show me that.

Dr. Harpham:
So does being aware of the stresses in your life and choosing how you react to them.

Susan:
Yes. Yes. That's what I learned from all of it.

The Transition between Treatment and Work

Dr. Harpham:
Well, shifting topics a little bit. Many patients with ovarian cancer are unable to work during the months of treatment, and I would like to talk about the transition back to work after a long absence. What was that like for you, Annie?

Annie:
I dreaded going back to work. Like, I think it was Susan mentioned, I think just the relief, you know, when you're in the hospital is like--I don't have to go back to that place. I think that place was worse than the chemo.

Dr. Harpham:
Mm-hmm.

Annie:
Going through the chemo or anything else, that was the greatest relief. But, as you start to mark down those thirty days before you're going to go back to work, it's like--oh, a couple of weeks. Uuhhh! I just, I dreaded it. I was hoping we would win the lottery so I wouldn't have to go back. The secretaries were very nice. They said anything I needed, let them know. They understood my--whatever I needed they said, "Whatever we can do to help you, let us help you." So, that was really nice. And the other people that I worked with and stuff, too, were pretty nice. It was just some of the upper echelon that--they just felt, well, she's back, she should be one hundred percent, and we can do what we want now. So, that was kind of, kind of the way it went. I know when I was fighting that one thing that I felt that I didn't need to do any more, the person would be nasty to me, so I would just take half a day off and go home sick. [laughs] I was done. I'd just go home sick. So, until that whole situation was gone, that was the only way I could cope with it at the time without making myself ill again or inwardly angry. So that was the way I handled it. I'd just go home and I'd rest.

Dr. Harpham:
Did you take any steps to help your transition, in terms of your relationship with your coworkers? Did you talk to them? Did you send them a letter? Did you do anything to help the transition?

Annie:
Certain people I would talk to. But some people, I just did not want them to know fully of what my whole condition was because I got burnt on something else. I just kept it basically with only a couple inner people, so to speak. People I could trust, because it seemed like when it gets out into the network of people, everybody just talks about you, and I don't know, I just feel funny about that. I just didn't want everybody to know every little thing about--generalities, okay. But I didn't want them to know all the inner details that I felt didn't need to be out there, to people that I considered acquaintances rather than friends.

Dr. Harpham:
Was it hard to keep things private, Annie?

Annie:
When I went back to work?

Dr. Harpham:
Yes.

Annie:
I found it easier to keep things private.

Dr. Harpham:
Because you were right there.

Annie:
Mm-hmm [yes], mm-hmm.

Dr. Harpham:
Was there any difficulties with your transition back to work, either physically or in terms of what you were able to do?

Annie:
Tired. I still was getting tired. There still was some fatigue and that type of thing and how would people respond to me? I still think there is still some uneasiness even after a couple years past the diagnosis. Sometimes, you can kind of talk about it when somebody else brings it up at the lunch table or something. You might bring something up that relates to it, but I really think people don't want to hear about it. Because the majority of people don't get cancer, and she is just one of those ten or fifteen people who got it, or whatever. So, I just don't think so. And I think people forget, you know?

Dr. Harpham:
Is that good or bad?

Annie:
Depends. Depends on the situation. I think, when they are starting to think that you should be doing this and this and this, to help their job be easier; then I think they need to remember that I'm also trying to take care of myself, as you are trying to take care of yourself. Somewhere there's got to be a little compromise.

Dr. Harpham:
What about you, Susan?

Susan:
I would have preferred a little more privacy, but someone breached that when I had to call my boss and explain why I was out five weeks. So that was a moot point. By the time I got in, everybody knew. It was a little uncomfortable the first day, because I had to come back. Five weeks wasn't really enough time--but I needed to do that to keep the paycheck going--because I just wasn't recovered from surgery. I had a small pillow on my stomach [laughing] when I walked in. But friends were very supportive and caring. Management wasn't. They were just "Oh, you're here." Kind of like you've returned from a week in Bermuda or wherever. I guess, not to be gender-biased, but I guess some men don't know how to deal with it. [laughs]

Dr. Harpham:
Did that surprise you?

Susan:
[laughing] No, not really especially. And the only bad experience was one guy, a friend; I thought he was a friend, made a joke when he first saw me. He was the joker of the group. He was always cracking jokes, and he made a very poor taste joke when he first saw me, which hurt my feelings quite a bit. I was about to say something and then I thought--then I reminded myself, what I learned from my mom; everybody handles this different. And, what I've learned is that some people can't handle--even though they don't have it--being around those of us who do, for some strange reason.

Dr. Harpham:
Then you were forgiving?

Susan:
Yes. Because I thought there is no point. That one I've learned not to waste my energy with things like that.

Dr. Harpham:
Yeah, you can't do that.

Susan:
And the other weird thing was, it was my first day in public with the wig, because my hair was almost out, and I figured, let me just show up with the wig. And that was kind of--because I'm not a type of person who likes to wear anything on my head, so that was a bit self-conscious, but some people didn't seem to notice.

Dr. Harpham:
Susan, did you take any steps to ease the transition for yourself or for the people around you?

Susan:
No, other than..what I did was, I tried to, believe it or not, accommodate them because some people want to know more. Some of the ladies wanted to know more information, symptoms and all that. Some people didn't. So, if people wanted more information, I would give it to them. If they didn't, I would not lecture them about going to their Gyn for an exam. So, what eased the transition, is I tried to make them as comfortable as I could, reasonably, by talking about it.

Dr. Harpham:
So the patient was taking care of the other people?

Susan:
Yeah, because I wanted them to be comfortable. I didn't want to feel like a freak, to be quite honest. You know, I there with a wig, kind of walking slow because of my abdomen surgery. And my first goal is I wanted everybody to--I wanted to be returned to "Susan", not "Susan with Cancer".

Dr. Harpham:
Did you have any other trouble with your transition in terms of pain or energy or any other physical problems?

Susan:
Yeah. I would be totally wiped out as far as fatigue. And there were times I could not walk down..people would volunteer to go get me lunch. I could not handle a walk. I work in a very large corporation and it's huge, and I physically could not walk that far. So, yeah, there was fatigue. And people did help me with going to pick up my mail and bringing it to me and print-outs and bringing them to my desk.

Dr. Harpham:
Looking back, do you wish you had done anything differently to help your transition?

Susan:
I would have stayed out longer. I needed to stay out longer, regardless of the pay. I should have. I needed at least a week or two more to recover from that surgery. Five weeks was not enough for that staging surgery and the hysterectomy, and chemo (three days to the day, after it). So all healing stops at that point. So, five weeks was not enough for me with what I went through.

Dr. Harpham:
Anything else about your transition?

Susan:
I would suggest, to keep in mind, some people--it seems to be harder on people around you and some people just are scared of it. They might do or say things out of fear, not to--that seem insensitive, but I think they are doing it because they just don't know and they are scared. Because it shows that we are all mortal, especially when it's somebody young, younger than they are.

Dr. Harpham:
So, realizing that your illness is affecting these people?

Susan:
Absolutely. Oh, yes it did.

Dr. Harpham:
And I am also impressed with your comment that you wanted to come back as Susan, not Susan with Cancer.

Susan:
Yeah.

Dr. Harpham:
And it sounds like you were able to achieve that.

Susan:
Yeah, and that was one of the remarks that made me feel the best, when one of my friends said that. Especially when I am sitting there with a wig, you know, feeling all weird. [laughs] And she said, "I see Susan, I don't see cancer." And that was when I gave her a hug. [laughs]

Dr. Harpham:
Very good. Carol, what about your transition?

Carol:
Well, my transition isn't really over yet. What I do for a living is that I am with the History Department at the University of Illinois at Chicago, actually, and I have been on leave dealing with this. So, part of my transition to work was just trying to get back to doing my research, which doesn't really involve anybody else, but that's one of the reasons it was difficult for me. Because it's the kind of thing where you're really--you're just sitting there alone with yourself and I really needed to wait until I was even more recovered to be able to sit down and get anything done. The next stage is going to be when I do go back and I start teaching and I start having more interaction with my colleagues. And my department, the department chair, so far has been very supportive. They have been very generous with time off for me. But, I'm not really sure what I'm going to run into when I get back. So, [laughs] that's where that is.

Coping with Infertility as a Result of Cancer Treatment

Dr. Harpham:
Another issue, a very emotional issue, that comes up when talking about ovarian cancer, is infertility. The treatment of ovarian cancer necessitates removal of the organs of fertility. The inability to have children becomes a major issue. Annie, you have no children.

Annie:
No.

Dr. Harpham:
What was it like to lose your fertility in order to save your life?

Annie:
Well, that was, well, I'm not going to say it was an easy choice, but I didn't want to go back through and have surgery the second time, in case it was ovarian cancer and they only removed the one ovary. My husband didn't think that I would enjoy going back through a second surgery later on, because of the ovarian cancer in the family. So, it hurts a lot at times, especially when people talk about kids at the lunch table and people are pregnant and you know that you'll never ever have that opportunity. And, I won't go to baby showers. I have already made that choice. I think, even when I was struggling with getting pregnant, that I can't do that. It just hurts too much and somebody said, "If you don't want to go, it's okay." If you just want to get the gift and go and drop the gift off, or give it to the person, not a problem.

Dr. Harpham:
Did that make it easier?

Annie:
Well, in a sense it doesn't make it easier, but it's not like you want to totally ignore their joy either. And maybe ignore is not the word, but you don't want to sabotage or just make their joy any less, or whatever. So, you're happy for them and you wish them the best, but it just hurts for you because you'll never have that. People talk about being grandparents and you know you'll never have that either.

Dr. Harpham:
How do you deal with that loss? It's the loss of a dream, a loss of a possibility. How do you find some peace about that?

Annie:
[laughing] Sometimes, not thinking about it, or finding other activities. I went back to school, and that was like somebody else said there; they went back and did classes and they did that. I went back and did classes because somebody told me it was like when you go back to school, it's like getting positive strokes. Maybe if you're not getting positive strokes from some place that you put a lot of time into, you go somewhere else, and [laughing] always going back to school, you always get positive strokes. I mean, if you are doing stuff that's required of you, usually people are pretty impressed and you get the positive strokes. I thought maybe that would take care of my lost dream, and to some extent it has. But as the time is winding down to finishing, and stuff, then you are kind of back into that reality issue again. So, you are trying to make up for it in some ways, but somebody said, "It will always be with you for the rest of your life."

Dr. Harpham:
Do you talk to other people about your feelings? Like, if you're invited to a baby shower, do you explain why you can't go or you're not going?

Annie:
Prior to the cancer treatment, when we were trying to have children, I did tell somebody that I just couldn't go because it just hurt me so deeply and I didn't want to take away from their joy. But the person that--they felt it was really special that I still went out and got them the gift. So, that was really nice to hear from somebody who was pregnant. And, I kind of explained to her what was kind of going on and stuff, and it was just too hard, you know?

Dr. Harpham:
Well, do you feel like you need to hide the loss? Put on a good face for them?

Annie:
Oh yeah. Uh-huh.

Dr. Harpham:
Who do you share the loss with?

Annie:
Sometimes with..once with a group I did, and then with another counselor. I have a lot of friends who also don't have children, but they seem like they've made that choice to be childless or child-free. They don't seem to miss it or whatever, but I kind of do.

Dr. Harpham:
It's very different when the choice is made for you.

Annie:
Mm-hmm [yes].

Dr. Harpham:
..than when you make the choice.

Annie:
Mm-hmm [yes].

Dr. Harpham:
How has the infertility affected your relationship with your husband?

Annie:
Not..well, kind of difficult to read at times. It's like it would have been nice, but yet, it's not like it was the end-all to everything or that was the most whole thing of what the marriage was based on, or that type of thing. So, it would have been fine if things would have worked out, but its okay, yet. You know, it's not like he loves me any less or anything.

Dr. Harpham:
Susan, you're single and you have no children.

Susan:
Mm-hmm [yes].

Dr. Harpham:
How has the infertility affected your life?

Susan:
Well, to add insult to injury, there was a bit of a baby boom in the office while I was going through this. There was a baby born just a few weeks before I went on leave, one a couple of days before I returned, and then two in the three months right after my return. And it hurt, because I thought I had a couple of years left, to work that out. I did feel like I had to put on a happy face. I mean a couple of the people even brought their kids in, you know, while they were still on maternity leave, they'd bring their kid in and I ducked. [laughs] I made sure I wasn't in my office when they rolled the stroller around.

Dr. Harpham:
Because why? How did you feel seeing those babies?

Susan:
Because it would hurt and I didn't want to rain on their parade. It's not their fault, but at the same time, I wasn't ready to deal with it. And that was the only thing I could do.

Dr. Harpham:
When you say it hurt, what were you feeling? What thoughts were you having?

Susan:
The knowledge that you can't have it no matter what you do. There's nothing I could do about it. That's hard to deal with. There's absolutely nothing you could do to change that.

Dr. Harpham:
Were there any emotions associated with that trying to accept the reality, either anger or sadness or grief or, I don't know?

Susan:
All three probably, but more grief. It's the kind of thing that's hard to talk to people about, because most people that want kids have them, one way or another.

Dr. Harpham:
Well, you know, grief is the human healing response to loss, and that grief needs expression. Is there any place where you could freely express your justified grief?

Susan:
Well, probably by myself, to mom or to ladies, like are on the phone today, who can relate. Because, you know, what I found is a lot of people would say, "Oh, you can adopt."

Dr. Harpham:
[laughs] Uh-huh. Yeah.

Susan:
Well, that burns! [laughs]

Dr. Harpham:
Tell me about that.

Susan:
I mean, that's wonderful, and ironically, when I was younger I thought, "Yeah, adopting would be great. Give your love to a child already here." But, that's not what you want to hear when you are hurting because you can't have a kid of your own.

Dr. Harpham:
Tell me why.

Susan:
Because to me, I know the intent isn't there, but it sounds like it's minimizing it. No, you can adopt. You know, it's kind of like the same thing when people find out about your illness and they say, "Oh yeah, I had a brother's friend's cousin's neighbor had it and this is what's going to happen to you." It's kind of minimizing the whole situation and the whole hurt.

Dr. Harpham:
So, you needed the enormity of it validated?

Susan:
Yeah. [laughs]

Dr. Harpham:
Susan, did anybody validate it for you?

Susan:
Actually, no. [laughs] No, I do what Annie does. I just basically distract myself.

Dr. Harpham:
Did you ever get connected with a support group where women dealing with a similar problem issue could talk freely?

Susan:
No. I have thought that might help, but what I have chosen to do is join advocacy groups. And again, kind of doing what I did, to avoid work. I just dive into something else to keep me busy. Probably should.

Making the Difficult Choices

Dr. Harpham:
I'm curious when you first got hit by the loss of your fertility, because when you were diagnosed with cancer you were facing a life threat.

Susan:
Ah, but see, it didn't happen--I didn't really have that choice because I went into the emergency room with pain, and believe me, I was thinking kidney stone, infection. I didn't know what, but cancer certainly didn't pop into my head. And I would have signed anything to get them to stop the pain. So, I signed a consent for surgery to remove a cyst, a big cyst which was suspicious. When I came out of--it was supposed to be an hour surgery--when I woke up, and of course, they had in the same consent "possible…" and then a huge list of all these "ectomies".

Dr. Harpham:
Right.

Susan:
I signed it. I was in pain. You know, what are the odds? They always throw these possible things at you. I wake up after six hours of surgery, instead of one, and that's when I find out I have been spayed [laughing], for lack of a better word.

Dr. Harpham:
How did you react when you realized it?

Susan:
Well, part of it, I didn't realize it at first, until I couldn't understand why I was so incapacitated, why I had all these IV's and morphine. I was kind of numb from that and kind of foggy. And, I remember, in a foggy way, my oncologist, you know, I was like, "Well what was done? What tumor? How big was it?'' Because I didn't know what went on. And, somehow it came up and I remember his phrase, "Oh, we took out everything." I said, "What do you mean 'everything'?" He said, "Everything." And I said, "Oh, okay." And I just didn't know, I was in shock.

Dr. Harpham:
Now, do you feel like they had any choice?

Susan:
Probably not, because after the fact I went and checked. And given, I was a stage I, but I was clear cell, and I called--the information gatherer that I am--I called the National Institutes of Health and all these agencies. And that is the recommended treatment for clear cell. Remove everything. Even stage I.

Dr. Harpham:
Knowing that your surgeon gave you the best treatment, to give you the best chance of survival, does that change how you feel about the infertility?

Susan:
No, because the feelings are emotional. Intellectually, yeah, I know. Had I known, had I been given a diagnosis before surgery, and then I could have laid it out. Hmm. Roll the dice and just remove the ovaries and leave everything else. Maybe go for artificial insemination. I don't know that I would have chosen that, given the option before surgery. You can't roll back time.

Dr. Harpham:
Right.

Susan:
The fact that it saved your life is intellectually important, but it still hurts. It's a human need.

Dr. Harpham:
You're making such an important point. And that is, that our brain can understand rationally that certain things are good or right, but it still hurts. It's still very emotional. And it takes time to work through these things. But, I do believe that reframing or understanding how, even if you would have liked to have the choice ahead of time, the fact that you probably would have chosen the same course, may actually make it easier down the line. But, I go back to the point that I made with Annie that grief is the human reaction to loss, and allowing that grief to have expression can be very healing.

Susan:
I agree.

Dealing with the Finality of Loss

Dr. Harpham:
And it takes a long time. It takes a long time. Carol, how about you? You had no children. You were 46, so the idea of not having children was not news to you. What was new was that it was now impossible.

Carol:
Right. I had actually married late. I have only been married six years, now. And when my husband and I first got married and I was around 40, 41, I thought there was still a chance. So we--without going through fertility treatments and all of that kind of stuff because we really were a little bit ambivalent about it--we still tried to become pregnant, but it didn't happen. I now know that was probably because of the condition that ended up costing me my uterus. But, I never really gave up, and although I knew it wasn't realistic, I mean, you get 45, 46 and nothing's happened. I knew it was totally unrealistic, but it really didn't matter. You know, I had that fantasy that I might be able to and I was going to cling to that, really, I think, until I went through the menopause. And I felt it was just ripped away from me, and I also felt, and still feel a real sense of loss in the same way.

Dr. Harpham:
How do you deal with that sense of loss?

Carol:
[Sighs] Well, mostly these days it's something that strikes me almost out of nowhere, and I just, I just take a couple of breaths and I recognize that it's a loss and then I just move on.

Dr. Harpham:
How has the infertility affected the relationship with your husband?

Carol:
I don't think it has. As I say, we both were ambivalent, in that we both knew what we would be giving up if we had children, but we also knew what we could be gaining. So, I think that we both were prepared to live with whichever way it went. And, although it was difficult for me that I had to close the door on that so firmly, I don't think it was as difficult for him. You know, I mean we are the age we are. It's not really as though it were likely. But the thing is, even though it wasn't likely, and I have had other people talk to me and they don't really grasp that. I know it wasn't likely, you know? I know I wasn't likely to have it [but] I was sorry.

Dr. Harpham:
Do you think other people could understand that or not?

Carol:
I think other people could understand that. I don't think they could understand why having the hysterectomy would make it any worse.

Dr. Harpham:
And how did you come to peace about other people not understanding that? Did you try to explain it? Did you just say, "Well I guess they can't understand"?

Carol:
Well..

Dr. Harpham:
Did you find people who did understand?

Carol:
I think my closest friends understand. I was part of a group of cancer survivors, and I don't think everybody in the group understood. But I also think that some people managed to grasp it, and you know, not everybody is going to understand everything. Not everybody is the same. So, I think I just accepted that some people weren't quite going to understand it and that's life.

Dr. Harpham:
Were you able to let it go?

Carol:
Mostly.

Dr. Harpham:
Well, before we close, I really would love to touch one more topic, and that is that cancer causes patients to face their mortality and reassess their priorities in life. Many survivors feel that they can never go back to their "old normal", which means they can't look to the future with the same eyes as before. Creating what I call a "new normal" means creating a new sense and a new vision of their future. Annie, can you share with us any difficulties that you had facing your future after cancer?

Annie:
Probably a couple of them are; the fear of reoccurrence, even when you kind of get into that normalcy phase, to some extent. Could it ever come back when you least expect it? Which would sure change things and would you make the decision of going through chemotherapy and things of that nature again? The bad parts, again, never having children. I think at some extent the loss. I was thinking what Carol was saying there and Susan about, I think it's that loss of being feminine, you know, because that kind of defines you. I mean, to some extent, your reproductive system and stuff and the loss of that, with the loss of not having children. In a sense, you kind of feel out of that loop. So still, in essence, those are some difficulties. And then, I look at, it's like getting a second chance at life. I remember somebody giving me an article, and it talked about; it's almost like burying your old self and coming into a new self. However that might be. Whatever you have learned and can take with the experience, this is what you are going to move on with.

Dr. Harpham:
And what do you think you've learned?

Annie:
Basically, how to handle my stress, knowing my rights, that I have the right to say "no" when I don't want or don't think I need to do something. I can choose whatever I like to, that I would enjoy to do. I don't have to pick certain things because other people have picked certain things. I don't have to go along with the crowd, to some extent. And I'm looking at some of your dreams and making them your goals now, of things you might like to do. So, in a sense, that they're not dreams anymore; you are making them goals and you are having some strategies to reach them.

Dr. Harpham:
Susan, how about you? How has your vision of the future changed after cancer?

Susan:
Well, it's changed in a lot of ways. The instant surgical menopause, certainly changed things. I now have different concerns about hormones and vitamins and calcium and what to do, that I wasn't particularly concerned with before. But all told, I think I have gained more than I've lost, quite honestly. The most important thing is; I've learned who my friends are and that's important. I learned that I was very fortunate in that regard. I've learned how important priorities are. I appreciate things more. I have taken--it's brought my family closer together. They circled the wagons around me. It healed a couple of relationships. It allowed--it gave me a chance to say, "I love you" to my brother and my parents. All told, I came out ahead. I've lost some major things, but I have also gained some major, major things and I appreciate life more.

Dr. Harpham:
So, in certain ways your "new normal" is a better normal?

Susan:
Yes. I do.

Dr. Harpham:
Carol, how about you?

Carol:
I have to say the same thing. Annie was talking earlier in another context about, you know, realizing that she didn't have to do everything and that she didn't always say "no" and relating that to the concern that stress had contributed to her cancer. I didn't feel that way, but I came to much the same conclusion, just by realizing how unpredictable life is. You know, the fact that something like this could come out of nowhere and it could so easily have been so much worse than it was.

Dr. Harpham:
Mm-hmm.

Carol:
How fortunate I really am to be here and that life is short and there really is no point in putting yourself through stuff that you don't need to. So I have been cutting stressful things in much the same way. You know, I don't need to do this, I don't need this or I'm not going to do this, I have enough to do and somebody else is going to have to. Even, I don't know, even waiting in line. Although, before, I used to get annoyed at how much time it was taking for me to do things, I don't know, I just step back from it now and say, "Well it isn't really important. This isn't that much time." And, you know, it's not worth getting bothered about.

Dr. Harpham:
Paradoxically, being aware of the fragility and the shortness of life has made you more patient.

Carol:
Yeah. Exactly. Exactly.

Dr. Harpham:
Mm-hmm.

Carol:
Because it's just not worth putting the energy into it. You know, you save the energy for the things that are really important and having to stand in line isn't one of them.

Dr. Harpham:
Mm-hmm. Well, I'd like to say that cancer diagnosis encourages us both to know the fragility and the hopes of life and with this knowledge to live most fully.

Menopause and Ovarian Cancer Survivors

Dr. Harpham:
Another issue that survivors of ovarian cancer deal with is menopause. The ovaries are a key source of female hormones such as estrogen and progesterone. Estrogen is made in other tissues, too, but the loss of the ovaries can lead to significant symptoms related to the sudden loss of female hormones, and estrogen replacement therapy is such a controversial topic nowadays anyway. Annie, you were only 40 when you were put into menopause. Can you tell us about it?

Annie:
I didn't feel a lot of the effects until probably after the chemo was getting finished and that type of thing. But I remembered my doctor telling me it was important about the calcium supplements, and he gave me some ideas of things like the Tums or getting a calcium pill, or something along that line. And then, he said he could not put me on anything until after my chemo was finished and also checking my numbers. That's when I went and did the--I'm doing the pills. I can't remember the name of it off-hand.

Dr. Harpham:
Premarin?

Annie:
Yes, thank you. And then the progesterone, or whatever that other one is. I do that one for ten days and the other one; it's a daily pill or something.

Dr. Harpham:
Did it help how you felt?

Annie:
To some extent, but I still think that I still have the power surges, instead of the hot flashes. [laughs] I still have those sometimes. I notice I sweat more than I used to and that sometimes that makes me feel yucky [laughs], because that was so nice before that I didn't have to worry about that too often. And now, it's like, you can just go to sleep and you feel wet under your chin. [laughs] So, anyway, that's kind of how I feel.

Dr. Harpham:
Emotionally, have the menopausal symptoms been an adjustment?

Annie:
Yes. Mm-hmm.

Dr. Harpham:
Tell me about that.

Annie:
I think it really relates back to how you feel as a woman. You don't feel--well you don't have your reproductive organs any more and that type of thing. You feel like, well you are getting to be that, well I want to say, old woman, and into a little bit of that phase or whatever. And you didn't enjoy--to reap some of the things from before, you know, like having children and those kinds of things.

Dr. Harpham:
So the menopausal symptoms reminded you of the infertility?

Annie:
Mm-hmm [yes]. I would say probably more to that extent. And then just some of the physical symptoms.

Dr. Harpham:
Susan, how did menopause play into your survivorship?

Susan:
Well, actually, I went into instant sudden surgical menopause. My oncologist thought he gave me Premarin on the way out of the hospital and he didn't. And being 36 at the time and after all that, that didn't occur to me either, and I just found myself starting to have symptoms. I mean like, all the stereotypical night sweats and literally taking off a sweater and putting it on, seconds apart. I would just bust out crying for nothing. And even though I had a lot to cry about [laughs] I know normally, a shampoo commercial would not upset me. So, I called his office, you know, wondering if the painkillers were doing this or what. And somehow the nurse said, "He didn't give you Premarin?" I said, "No." So, she quickly phoned it in and it relieved my symptoms within, I'd say, twelve hours. It did help with mood. It helped with all the night sweats and the hot flashes. One thing that's lacking--and it's still on my to-do list is I would really like to explore other alternatives to Premarin--and what I'm having difficulty finding is information. I would like to find first-hand information from ladies who have gone through instant menopause like me. I know women who are on natural, so-called natural treatments, but they were into menopause or through it when they had their cancer.

Dr. Harpham:
I think calling breast and ovarian cancer organizations would be able to help you get that information and contacts. Organizations such as SHARE, and breast cancer coalitions, that sort of thing, and that might be a good avenue to pursue.

Susan:
Yeah, there is a lot of conflicting information.

Dr. Harpham:
And, it's possible that the Cancer Survivors Network may have other shows that can deal with this.

Susan:
Something that can deal with the extreme symptoms.

Dr. Harpham:
With the symptoms of menopause after a cancer diagnosis.

Susan:
Okay.

Dr. Harpham:
Because many patients with breast cancer end up with menopause, and patients with non-hormonal cancers, the chemotherapy can put them into premature menopause and sudden menopause.

Susan:
Mm-hmm. Then I will contact that. But, I definitely need some medication for it. It was disruptive.

Dr. Harpham:
Has menopause been an emotional issue for you?

Susan:
Yeah. It was emotional and disruptive to my life. When you can't sleep; when you wake up in a drowning sweat and then you can't get back to sleep and you're trying to work. That's disruptive to my life. So, I had to have something, that's for sure. I mean, I had enough going on. I didn't need to be losing sleep and on an emotional roller coaster.

Dr. Harpham:
So it really affected your quality of life?

Susan:
Absolutely. And it was an extreme case. It was bad [laughs] in my case.

Dr. Harpham:
Okay. And another thing I would recommend is getting on the discussion section of the Cancer Survivors Network and asking about it.

Susan:
I will do that.

Dr. Harpham:
Carol, what about you? How did menopause play into your survivorship?

Carol:
Well, I also went into instant menopause. I'd had some perimenopausal symptoms before, but I was still pretty early in the process, as nearly as I can tell. I mean, I was still regular and everything. And yeah, right after the surgery, I was not taking hormones and I had monster night sweats. I mean I took to sleeping on a towel, with a towel, just because I would wake up drenched and I got tired of drenching the sheets, too. But that started to get better and I had hot flashes, but they bothered me less, if only because I'm usually cold. And so [laughing] I like to say I'm one of the strange women who actually look forward to the hot flashes so I can feel warm. [laughing] But, after a while, my gynecological oncologist convinced me that it would be a good idea for me to take hormone replacement. I like to say that she did it through a combination of flattery and logic.

Dr. Harpham:
What were her concerns?

Carol:
Her concerns were that, well the flattery part was, she said I'm too young.

Dr. Harpham:
There you go! [laughing]

Carol:
[laughing] There you go! I'm too young to live the rest of my life without estrogen and that I should take it at least for a time, because it does have all of these other benefits; osteoporosis being the main thing.

Dr. Harpham:
And that's the point, is that estrogen not only affects your quality of life in terms of taking care of symptoms such as hot flashes and vaginal dryness and those sorts of things, it does affect overall health.

Carol:
Yeah. And you mentioned vaginal dryness. That was the one symptom that I had a lot of trouble with because that affected my whole idea of myself sexually. So that was very, very difficult for me to accept.

Dr. Harpham:
Did you talk about it?

Carol:
Not really. I talked about it some with my husband. I talked about it some with my sister, who has dryness for other reasons, and I gradually just, I guess forced myself to get used to it. The estrogen replacement has helped some, but I still need lubricants, but I feel more relaxed about it. The whole process made me, feel about sex, very differently than before.

Dr. Harpham:
And the thing is; vaginal dryness can be a debilitating symptom.

Carol:
Yeah.

Dr. Harpham:
Absolutely. Not only in terms of sexual relations, but just in every day

Carol:
Yeah.

Dr. Harpham:
And you know, people are willing to talk about their hot flashes, not as willing to be open about their vaginal dryness, and there are effective treatments for vaginal dryness due to estrogen deficiency, many different options. And open discussion with your doctors will give you opportunity to get the best treatment possible.

Carol:
Okay.

b
So, I really appreciate you bringing that up and sharing that.

Carol:
[laughing] Thank you. It's not easy.

Dr. Harpham:
No, it's not easy, but it's very real.

Carol:
But, I'm on Estratest, which is a combination of estrogen and testosterone, and I found that it made a big difference. Not just in the reduction of the symptoms that didn't bother me as much as they might have anyway, but also the funny thing was that there was something that just started to feel right again. It was very subtle and it's hard for me to put my finger on, but I really think it was living without the estrogen, in subtle ways; it just affects so much of you.

Dr. Harpham:
Yes it does.

Carol:
I really felt that something was kind of off, and once I started taking the estrogen again, it was like, oh, I'm feeling more normal now.

Dr. Harpham:
And what you're describing is that it's not something you can measure with a blood test or on a CAT scan, but it is very tangible. It is very real.

Carol:
Right.

Dr. Harpham:
The way you feel. The way you think. Just the way your mind works is affected by estrogen.

Carol:
Exactly.

Dr. Harpham:
Well I thank all three of you to take the extra time to do that little segment because, again, I think it was--you just had a lot of important things to say tonight. I hope our discussion has helped to sort through some of the issues that may be part of your life. A big thanks to our guests, Carol, Susan and Annie, for their willingness to share their thoughts, feelings, and a part of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the website or by phone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.

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