My friend Lorie Parch -- an amazing journalist, wonderful writer, and all-around dear person -- recently interviewed me for a piece she's writing for Health.com:
Q: The basics: Can you tell me when you were diagnosed, how old you were at the time, what your diagnosis was, and briefly what your treatment was?
A: I was diagnosed in April of '97, the 30th I think, with invasive ductal carcinoma. I had a lumpectomy first, with lymphnode dissection, and then because the surgeon did not get "clear margins" she recommended a mastectomy. My lumpectomy was in May and the mastectomy was in June. I had immediate reconstruction, which means they took out all the breast tissue and left in a device called a tissue expander. This expander got pumped full of saline -- a syringe-ful each week--to expand my skin (and stretch the heck out of my scar).... Until I was gigantic. Like a double-E or something. Then, just in the nick of time, they deemed me stretched enough, and got me booked for surgery to have it removed and the permanent, saline implant put in. I say in the nick of time because it was now August and my wedding day was September 13th. I think it was actually the beginning of Sept. when I had the surgery. All went well and my tight bodiced wedding gown looked fine. I turned 32 in June of that year. I don't remember exactly when but I started chemo as soon as I was sufficiently healed from the mastectomy, so that crazy period was filled with chemo treatments and trips into the city to get expanded. Strange pre-wedding time...
Q: Were you married, single or with someone but not married during this period?
What effect did having breast cancer have on your relationship, both the relationship in general and your sex life, if any?
A: My then fiance was great during my breast cancer. He just stood by me, stoically, went to appointments with me, slept in my hospital room the nights I had to stay over. He was great. I remember him taking all these pictures of my breast after the lumpectomy. It was kind of gross and funny and poignant all at the same time. I don't think it had any effect whatsoever on our sex life. We had been living together for a almost a year at that point. One cool thing about Scott was his attitude toward the nipple reconstruction. When I came out of the reconstruction, I had a big, red scar going diagnonally across my fake boob. He looked at it and told me he didn't think it was worth going through another surgery to have a nipple put on. He kind of felt like the redness of the scar was serving that purpose... And stickign a fake nipple on top wasn't going to do anything for anyone.
Q: What was your body image like before you had breast cancer?
A: I had a good body image for the most part. I've always wished I had longer, thinner legs. And good skin. I liked my breasts, always thought they were a good size and all.
Q: Did it change and if so, how?
A: It was hard losing the breast purely from a sexual enjoyment perspective. I wasn't thinking that Scott wouldn't be attracted to me with my strange, fake boob. I was just thinking there's one less sexual part of me. I liked having two nipples. They're sensitive and sensual and it's better to have two than one.
Q: Did you lose your hair during treatment? If so, what was that like?
A: I had CMF, so didn't lose my hair. I was very lucky to walk down the aisle with my own hair.
Q: You were young when you were diagnosed: Did you make treatment decisions with an eye toward preserving your fertility? If so, how so? [This is for another article we may add for younger women and fertility.]
A: It was very, VERY freaky to know that the chemo could knock out my fertility. Scott and I were both huge kid people. Couldn't wait to have a baby. So we would celebrate every time I got my period during those 6 months of chemo. After my treatment was over, my oncologist and I talked about tamoxifen. And he told me that he didn't feel it was worth it to get the small reduction in risk of recurrence when I would have to forgo trying to get pregnant with my new husband for five more years. It turned out to be a wise decision. I got pregnant with my son two years after my breast cancer, and when I tried to get pregnant again a few years later, it didn't happen.
Q: Any other physical changes that were difficult to cope with – or, conversely, ones that you thought might be tough but were easier than you expected?
A: The chemo gave me grey hair. Just a sprinkling, but I don't think it would have arrived for several more years had I not had chemo. It also put weight on me. The constant semi-nausea made me nibble a lot and I put on some pounds during those 6 months. The fake breast has always been kind of a conversation piece for me. So while I didn't expect it to be hard -- I really had no problem saying goodbye to a breast in order to get rid of the cancer -- it was really super easy for me. I will show anyone who wants to see what a reconstructed (sans nipple) breast looks like. There there have been moments and still are moments when I feel sorry for myself and wish I had two breasts. But they're few and far between. I'm so, so fortunate to have my life and my beautiful little boy. Who's now 7!
Q: It’s been a while since you had cancer – have your feelings about your body changed at all during the years since you first recovered and now?
A: The bummer is that the real breast weathered 10 years of life, a pregnancy, breastfeeding, weight gain, weight loss ..... And gravity. While that perky little saline implant just sits there and doesn't MOVE! So I'm way lopsided now, and really need to get "fixed." I had an appointment with a plastic surgeon at Yale to talk about my options last year, but never made it because other bigger priorities took over. It's a goal for this year. I'd like to have it redone so I match, and I'd like to replace the saline with silicone, which apparently is a much more natural look and feel. I just would really like to go bra-less now and then and be able to wear any shirt and any bathing suit without having one boob 6 inches higher than the other!
Q: You’re dating someone seriously now, right? How long have you been together?
A: Just broke up with a boyfriend. Am dating now, having fun. Just met someone who's great.
Q: Has dating been in any way challenging owing to having had breast cancer?
A: No -- I'm really comfortable with my body and with sexuality. I'm lucky -- it just isn't an issue. I tell people upfront about my breast cancer, that I only have one breast. I let them try and guess which is the fake one. And since I've been divorced and had a couple boyfriends, I really realize how little that stuff matters. Men seem to have absolutely no problem with it. I'm more of the mind to ignore the fake one -- because it has absolutely no sensitivity and is just a salt water balloon to me, not part of my body -- but the men I've been intimate with seem to want to be very gentle and loving to it, as if it somehow represents all that I've been through.
Q: Is there any advice you’d give to a woman going through this to help her preserve good feelings about herself or keep her sex life from going astray? (I think you said you have a good body image, and always have, so it'd be great to hear how you maintained it during this time.)
A: Sex is so not about having two intact breasts. It's nice having two breasts, sure. It's also nice having a flat stomach and beautiful, smooth skin, and long legs and a million other things I don't have. But when it comes down to getting under the covers, very little of that stuff matters. Sex is all about everything else ... Guys don't care. They really don't. If one part is missing, they will find another one they like just fine .... :-)
Q: Are there any resources – websites, books, organizations – that you’d recommend?
A: www.youngsurvival.org SO important for young women with breast cancer ....