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PRx Host : |
Good evening. Tonight's guests are Dwynne Casey and her husband, Don Casey, head coach of the New Jersey Nets. They are sharing their experiences about their fight against breast cancer. Welcome to PlanetRx.com.
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Dwynne Casey : |
Thank you for having us!
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PRx Host : |
Dwynne, even before you were diagnosed, you were involved in breast-cancer awareness. Can you tell us about that?
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Dwynne Casey : |
My husband was an assistant coach for the Boston Celtics. They had gotten a group together called Celtic Wives Save Lives and we decided to make mammograms for low-income women our project. We had a luncheon to bring everyone together to talk about the subject of breast cancer. We had doctors in attendance to speak to us and show us self-exam techniques. That was the first time I had ever seen that. From that point on, I began doing self-exams. Four months later, I found the lump.
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PRx Host : |
Please tell us about discovering the lump in your breast. How did you react? How quickly was it confirmed that the growth was malignant?
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Dwynne Casey : |
My husband was out of town playing a game. I was taking a shower and was doing the exam and found the lump. When he came home, I told him I thought I had a problem, but I wasn't sure. We had the team doctor look at it the next night. He thought that we should see somebody and set it up for the next day. I found it on a Tuesday, the team doctor saw me Wednesday. On Thursday, I went to the oncologist/surgeon. He felt that it was malignant, and scheduled surgery for me for Friday.
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PRx Host : |
Wow. That's pretty fast!
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Dwynne Casey : |
But it was good because I didn't have to think about it.
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PRx Host : |
Don, what were your thoughts? How did you support your wife?
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Don Casey : |
Well, at first, you just want to get her to the best doctors. Being with an NBA professional team certainly helped. The team physician was excellent, and he was the one who organized things quickly.
We weren't sure that the tumor was cancerous until the operation when they quick-froze it and the biopsy indicated it was malignant. We had it set up to go into the lymph nodes at the same time to see if it had spread in any capacity. After finding out it was a malignancy, it was such a stark and helpless feeling. Not knowing what you can do because it's such a new venture in life that you never anticipate, and the word "cancer" itself is frightening.
My strategy was to get all the contacts I knew around the country. I talked to friends at Duke Medical, Temple University, and the University of Pennsylvania, and we had someone we knew at the Mayo Clinic. They all said we were in the best area for breast cancer, that Boston was very strong and very aggressive in their treatment.
But I think like any other husband. The reality that you could lose your partner -- that itself became very frightening, and I became selfish. I didn't want to continue by myself -- plus my wife pays all the bills and does all the books. When you are a professional coach and away from your home a great deal, the wife is the center of getting everything done. Taking care of the kids, taking care of the home, coming to see you. You rely on her very much. That really scared me, so that's what our decision was -- to seek out and get the best treatment we could, and consult with as many people as we could.
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PRx Host : |
Apart from the campaign with the Celtic wives, had you had any personal experience with breast cancer?
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Dwynne Casey : |
No. We have no breast cancer in our family. It was the first time that I actually knew anyone or had anything to do with breast cancer. You always think it can't be you because it's not in your family, but it was there. We were in a funny situation. We were in Boston, and our kids and my parents were in San Diego. Because everything happened so quickly, it was just Casey and me who kind of dealt with it, and we talked on the telephone with everybody else.
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PRx Host : |
Here's a question from the audience:
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Pip : |
Did you two explain to your children what was happening? How did they deal with it?
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Dwynne Casey : |
There again, I think it was hard. The three kids were in school, and for them to come because it was so quick, we tried to explain as much as we could. We didn't really know what we were dealing with before the operation. When the operation was over, in my mind, I wanted everything to be exactly the same. I didn't want any changes, because at that point, I felt that -- this was in November -- I felt that Christmas was going to be my last Christmas. I was determined that everything was going to be the same. We really didn't talk with the kids at any great length.
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lacy : |
Dwynne, when you had tests done after your lumpectomy and during subsequent treatment, how did you deal with the terrible waiting for results?
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Dwynne Casey : |
I got my results on Tuesday, so it really wasn't a terribly long time. But the wait is horrible.
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Don Casey : |
The wait is horrible. We waited for the jury. The surgeon mentioned to me that he liked what he saw in the lymph nodes. He liked the smallness and the contour of the tumor. It was on the lateral side versus the medial side, and he was optimistic about the pathology. But again, we were in an unusual position where the Celtics doctors could really speed it up -- not having that wait was a distinct advantage. I can appreciate the agonizing over the waiting period, which is usually a week -- luckily, the pathology report was clean.
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PRx Host : |
Another question from the audience:
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Theodora : |
When my mother went through treatment for breast cancer, her self-esteem plummeted. Dwynne, did you have any problems with self-esteem? How did you deal with them?
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Dwynne Casey : |
I don't think I had a problem with self-esteem. I had a problem with the fact that the word "cancer" was now put to me. The first time I went out of the house after the operation, I felt like I was walking down the street with the word "cancer" on my forehead. Casey was so good helping me get through the fact that my breast was disfigured. If that's part of the self-esteem that you're talking about, I really didn't have a problem with that.
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PRx Host : |
Did people react differently to you once they found out about the breast cancer?
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Dwynne Casey : |
No, I don't think so. Everyone was very sympathetic, and of course, everybody in the Celtics family pitched in. When Casey had a road game, someone was there to take me to my radiation. I wouldn't say anybody shied away from me. If they did, I didn't notice it. Casey wanted me to stay in Boston. He didn't want me out in California. Then we had to deal with the fact that he had to travel with the team, so that's how it got worked out.
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Don Casey : |
And also it was the radiologist we were going after.
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Sessie : |
My best friend may have a malignant tumor. Is there anything I should or shouldn't say to her? I want to be supportive.
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Dwynne Casey : |
I think she's got to go to a doctor and find out right away!
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Don Casey : |
When you have a foreign body where you can feel it, and you don't know what it is, you must get to proper medical treatment. There are more good stories than bad stories. For anything that is abnormal, if it is malignant, there are a lot of good stories. There is much more optimism than before. It is still quite serious. It can be lethal. You should be supportive. Seek a medical opinion and do exactly as they say.
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ccramer : |
Hi, Mrs. Casey! Did you go to any support groups during your treatment?
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Dwynne Casey : |
I did not go to a support group per se. I had 33 radiation treatments, and when you have radiation, they give you an appointment that you keep every day. My appointment was 8 o'clock, so for 33 days, all the people with the 8 and 9 o'clock appointments sat in the office together. That was my support group.
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Don Casey : |
The season was still going on, and the games kept moving along. My support was constantly trying to get updates on information, constantly talking with the doctors, constantly reassuring Dwynne with what they were telling me, that we had a very good situation within a bad situation. Statistically, she had a very good chance of remission/cure. The doctors chose to pursue a holistic approach to her recovery. One of the things they did was to formulate food to help her overcome her tiredness. The oncologist recommended different vitamins, so it became a team approach rather than just the radiologist. Everyone involved played a part in her recovery.
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PRx Host : |
Here's another question about diet and cancer:
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lazqueta1 : |
Good afternoon, Mr. and Mrs. Casey. I am a 23-year-old Spanish student who lives in London, but my mother is suffering from ovarian cancer in Spain. She's been following treatments since three years ago and seems to be slightly better now. The question I wanted to ask is whether you think a healthy diet (no sugar, caffeine, toxins, alcohol, and animal fat) is really important to fight cancer in any way? I do believe it, but cannot radically change her diet.
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Don Casey : |
Well, I think that you are into a subject that neither one of us is expert on. But we are around the medical community daily. There is a strong feeling to put you in touch with a nutritionist that can deal with the cancer, to deal with the immune system, to build the system back up. Anything you can do to complement the proven care, I don't think you can do anything but help. But to get into specifics of coffee, etc., that's out of our jurisdiction. But try consulting. Talk to as many people as you can who have been involved with ovarian cancer and find out what kind of treatments were most beneficial to their recovery.
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PRx Host : |
Here's a comment from the audience:
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namch1 : |
I don't really have a question, I enjoy hearing of success stories with breast cancer, as I am a 36-year-old who has survived breast cancer three times. I was first diagnosed at age 27. It is not a disease of age. But we can beat it.
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Dwynne Casey : |
That's incredible. She should be talking!
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Don Casey : |
Well, I think, too … the information I found out, once it was discovered that Dwynne had cancer, indicated that women make up 50% or 60% of our population, but are only getting 30%, 35% of the research dollars. Most of it was going to men. That's old-time thinking -- that the man was the bread-winner. Now, funding for breast cancer is moving up and closing in on 50%, but my personal opinion is that, in spite of all the great things going on in the 22 cancer centers around the country for breast cancer, which is an epidemic, and prostate cancer for the male -- I just think we need a Manhattan Project. I'm disturbed because it's taking so long to find a cure. Whether it's been inappropriate research or lack of funding … whatever the reason, it's long overdue.
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PRx Host : |
Do you think they'll find a cure in your lifetime?
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Don Casey : |
Yes, I do, and I think they're decoding the genes. They have the capabilities. They certainly do. It just has to be a huge project. This is wiping families out. This is a catastrophic disease.
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PRx Host : |
Dwynne, back to your experience. A question from the audience:
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BlueFly : |
Did you feel different about your body? Like there was an invader?
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Dwynne Casey : |
I don't know that I could put a yes or a no to that. I just felt like I was different, because when we were growing up, cancer was called "The Big C." For that to be put next to my name was what was frightening.
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smittybear : |
I just want to say how proud I am of both of you and what a pleasure it is to know you! Love, Jeffrey from San Diego.
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Dwynne Casey : |
When we're in San Diego, he comes out and gives us a massage! He's a sweetheart. Hi, we'll be there soon!
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PRx Host : |
Here's a question about mammograms. Feel free to speak from your own experience:
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LadyT : |
When should I start getting mammograms?
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Dwynne Casey : |
I believe the age they talk about is 40. If you have it in your family, I think you should do it sooner. My own daughter is a good example. She had to have a mammogram when she was 30 or 31. She has fibroid cysts in her breasts that we found out were there a couple of years ago. When I had my experience, I told her it was very important to do self-exams. She has to be very aware of changes in her breasts because of the fibroids. Right before she got married, about two years ago, she had a mammogram because she found the fibroid tumor. It depends on the circumstance, although the average age to start is 40.
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Don Casey : |
But my wife had a clean mammogram six months before she found the tumor. The self-examination is the main way to go, rather than relying on the once-a-year mammogram. It popped up after the mammogram.
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Pokey : |
Did you need reconstructive surgery after the lumpectomy?
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Dwynne Casey : |
No. In a lumpectomy, all they do is go in and take out the tumor and some of your breast. My breast looks like it has an indentation, that is the best way I can describe it. I'm not a big-breasted woman anyway, so I didn't feel I needed reconstructive surgery.
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jba99 : |
What is the long-term prognosis?
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Dwynne Casey : |
I'm going on eight years. I've been clean. They say you are considered cancer-free after you get past the fifth year, which is what you hope for. Because of the way the tumor was positioned, the doctors don't think it will go over to the other breast. That's the other fear -- that it will travel to the other breast. But because it was positioned toward the outside of the breast, they don't think I have to worry.
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Don Casey : |
She had what they call an estrogen-receptor tumor, which thrives off estrogen. Then she took Tamoxifen for five years, which denies estrogen to the body. Just in case he missed anything in the operation, the tumor won't be able to rehost itself. The studies show that five years is the magic number. At first, she was only going to be on it for a year. But every study that came in showed that being on the Tamoxifen longer was better.
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JohnnyJumpUp : |
Don, how do you think men should learn about breast cancer?
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Don Casey : |
I think that we have to take care of ourselves. I don't mean being a health nut or a hypochondriac, but I think there are certain things that men and women should do. The one is the Pap test for the women and the self-exam. And I think you should constantly remind your mate of that. Take care of yourself. The self-examination can be every two weeks or a month, and the tumor can pop up. You can never do enough.
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Dwynne Casey : |
When I was going through all this, Casey was with me all the time, no matter what appointment or where it was. It was commented on several times how lucky I was to have my husband beside me. Men tend to shy away. A few women in our organization had the experience where their husband sat in the office and heard the diagnosis and never spoke of it again. I felt very lucky that he was that interested, that he found out all the information, and stood by me.
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Kimmy : |
Dwynne, how did you find such a supportive husband? Any advice for a single gal?
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Dwynne Casey : |
Well, I didn't have to look too far. My parents brought him home! He coached my brothers in high school, and my parents would go to all the games, so they knew him. That's how we met! As far as single girls, I don't know. I wouldn't want to go out and have to look again.
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Don Casey : |
The more knowledge is getting out there, the more compassion out there ... the Cancer Society tells us the husband gets mad at the wife for having the disease. Some of them refuse to touch the wife, so it becomes a very traumatic situation for the wife and the man, too. The man has to be strong, but not macho.
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AlexF : |
Dwynne, are there any books you can recommend that helped you?
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Dwynne Casey : |
I really didn't read a lot of books. I contacted the American Cancer Society and got their cancer manual. I would look at that. When I was trying to make my decision on the Tamoxifen, I called the Y-ME organization in Chicago. I'm one of those people who doesn't really like facing a difficult situation to the point where I don't want to know what's going to happen. Casey's the one who can do all the medical terms and everything. I just went through it.
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Don Casey : |
I don't have any special books that I read. I just kept probing the medical community, the doctors. I think you have to do that. I coach at Temple University, and I would talk to doctors there and double-check. Then I would let the doctors in Boston know I was searching around. I think you have to question. I think you have to be informed. I don't think you have to challenge if it comes to that. Once you make your mind up and you go with your oncologist and radiologist and you believe in them, then you go 100%.
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PRx Host : |
Back to your feelings during your initial diagnosis:
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JohnnyJumpUp : |
How long did it take you to stop being scared when you first found out?
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Dwynne Casey : |
When I first found out, I was scared. To this day, I'm scared. I have a hard time thinking about it. It's just something that you have to put in your head: that you have it, and you have to do whatever it is you have to do in order to get rid of it. Like I said, I think time was on my side as far as when the diagnosis was made and when the operation was done. I didn't have a lot of time [to think about it], and then after that was over, the holidays were here. I was determined that everything was going to be exactly the same, so that kind of drove me. I was determined I would put the lights up outside, everything. It was not going to be any different. I stayed extremely optimistic during my 33 radiation treatments. I was very good going through them, and I had the last date circled on the calendar. The day after that, I went into a deep depression. They say that that's very normal for cancer patients, because you're putting so much energy into getting better or getting rid of it that you don't think of all the different consequences. I was not ready for that, for the depression to take over. It's a normal thing, so once they told me it was normal, I wasn't that scared.
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Pokey : |
Don, do you think your experience as a coach helped you keep your wife's spirits up?
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Don Casey : |
Well, I think it helped in part, in that coaching is trying to overcome obstacles, and you know the value of teamwork to reach a goal, so I would say yes, to some extent. I had never really thought about it in that context. It's natural for coaches to reach to other people to help solve problems in their sport and many other areas. With all the medical people we were in contact with and being supported by and doctored by, it made me feel like I was on a team to fight this battle and put it into remission.
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Pirate1 : |
Do you feel you have a special bond with other cancer survivors?
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Dwynne Casey : |
I think it's always nice to hear stories of people who have had it and come through it. Once again, I'm not one to get into groups and discuss it a lot. I think now that the worst is over, I try not to think about it, but if someone talks about it, yes, I do feel there is a bond between all survivors. We've all gone through the same thing.
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PRx Host : |
A question for both of you: How has this experience changed you?
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Don Casey : |
It rings the bell for mortality. And it certainly bonds you in a uniform effort to beat a dreaded word. I don't think it really changed us. It really established our commitment to help one another, no matter what. I've been more on the receiving end. I think it was strong to begin with.
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Dwynne Casey : |
I think we just appreciated each other. I think you appreciated the fact that I do take care of everything!
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Don Casey : |
That's a fact.
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Dwynne Casey : |
We've always had a very good relationship. In fact, we're going to be married 36 years next month. I think we had a very good relationship going in, and it was one that was of trust and love, and that's kind of what we relied on.
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JohnnyJumpUp : |
I just want to congratulate you both because I hear so many stories about the guys not coming through. It's refreshing to hear your story.
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Dwynne Casey : |
That's a big point, men's attitudes toward their wives.
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Don Casey : |
But now that she's healthy, if she gives me any trouble, she's back on notice!
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Kimmy : |
During radiation therapy, did you lose your hair?
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Dwynne Casey : |
No. You don't lose your hair in radiation.
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Don Casey : |
Laser.
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Dwynne Casey : |
I had a new way, it was called the laser. I had to go in and be tattooed, to have the area marked out where they wanted the laser to go. I have four little tattoos right around the breast. They were placed where the laser was pointed. The only problem I had with radiation was that I got tired. Some people do get ill, but I didn't get sick. It was just the tiredness.
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Pokey : |
I've heard of women having double mastectomies as a preventive measure. For example, if they have a history of breast cancer in their family. What do you think of this?
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Dwynne Casey : |
My personal opinion is, if they have a history of breast cancer in their family, I don't see anything wrong with that. To have peace of mind, I think, is worth having that done. That's my opinion. If I had known that it was in my family and I had a great chance of getting it, I would have done that. I don't see anything wrong if someone says they want to do it. I know there's another school of thought on that, that you shouldn't mutilate unnecessarily, but I think it's better to ease your mind, take every avenue to avoid a recurrence. That would be one that I would take if I knew.
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Don Casey : |
The family history is extremely important in these decisions. From my research, I can see that decision being made. It seems hard to envision seeing someone do that, but it's been proven to be a successful way to have peace of mind.
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PRx Host : |
What advice can you give to daughters whose mothers have breast cancer?
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Dwynne Casey : |
I think they should be encouraged to start going and getting their annual examinations. Of course the doctor will know that they have a greater risk of getting breast cancer because it is in their case history. I think that they should definitely do self-exams and have a mammogram when the doctor says they are ready for it. They really should start doing the self-exam even at a young age.
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Don Casey : |
Even though the mother has it, if there is no other family history of breast cancer, it's not a given that it's going to be passed on. It's an indicator, but it doesn't mean you should go around every day and say, "My mother has breast cancer; I'm going to get it." It is important to do preventive care, but it's not an automatic given that if the mother has it, the daughter will get it.
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PRx Host : |
For those without the resources of a professional ball team, where would you recommend they get information about breast cancer?
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Don Casey : |
Some of us happen to be in a fortunate position. Others people don't have immediate access to qualified professionals as we did, and maybe that's unfair. But the fact is, even if they can get to their own doctors, they should check on the cancer centers. There are 22 cancer centers in the U.S. and they are better to go to for treatment than hospitals. They are the best places for you to go.
Today, you can find so much helpful information on the Internet, but you have to look for it. There are ways to get the proper information and diagnosis, but you can't sit back and wait for it. You have to go after it.
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PRx Host : |
Can you tell us about the public service announcement you did following your experience with breast cancer?
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Dwynne Casey : |
It was shortly after, I guess, it was in March. I was the first NBA wife to get breast cancer. They came to our apartment, and we did a PSA (public service announcement): NBA Wives Save Lives. We stressed mammograms and self-exams, and then we brought in the point of the man supporting the wife. The NBA did that, and they showed it all that spring at NBA games, TV games.
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PRx Host : |
Is the NBA involved in any ongoing breast-cancer awareness campaigns?
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Don Casey : |
Yes, they are, particularly the WNBA. In fact, one of their better players came down with breast cancer and survived it. It's a natural part of their community awareness, community identification that the NBA has worked hard at. They're still quite active in distributing information, distribution of funds, and creating awareness.
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Pirate1 : |
Will you do a PSA saying NBA husbands help save lives?
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Don Casey : |
Sure. Sure.
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PRx Host : |
Well, we're about out of time here. Are there any last thoughts you'd like to share?
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Don Casey : |
I would say to the men of the world, take care of your wives, because they're very special. Keep everything afloat. Practice good medicine, take your vitamins. Most of all, do your self-examinations, have the mammograms, and don't hide from it. It's very curable, and you have to support your wife in this traumatic situation. It's a very, very difficult situation.
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Dwynne Casey : |
Thank you for having us, and hopefully we'll help someone who has questions in their mind. Maybe we have solved some of their questions or helped them get to where they should be.
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PRx Host : |
Thank you so much for joining us! Audience members, for more information about breast cancer, see the PlanetRx Health eCenter for Breast Cancer.
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