Colleen is a 55 year-old woman who has been married for thirty years with no children. She is a professor in the Annenberg School of Communication at the University of Southern California. After a number of false negative biopsies, she was shocked when she was diagnosed, particularly because she did not have any of the traits or risk factors typically associated with breast cancer. Wanting to keep her diagnosis as private as possible, she elected to use the Cold Cap method in order to reduce the amount of hair loss that comes with chemotherapy. Colleen takes us through how the Cold Cap treatment works and shares the amazing results she achieved.
My name is Colleen and I’m now 55 years old. I am originally from the mid-West. I grew up on a dairy farm in Wisconsin. I’m married. I have been married for 29 years. We don’t have children. We have cocker spaniels instead and my hoppy is competitive dog sports. I am a professor at the Annenberg School of Communication. I mainly teach organizational communication and conflict management.
I was very good about doing my yearly check-up, which would include a mammogram. And that was since I was in my 20s. Every so often there would be something suspicious and I’ve been sent for an ultrasound. Nothing ever came up. There were a couple of times I had biopsies. Nothing ever came up. There is no history of breast cancer in my family.
In the Spring of 2010 I go in for my annual check-up and they do the mammogram and a couple of weeks later, I get the letter or maybe it was in a phone call that said we need you to come in; we want to do an ultrasound; there is something that’s showing up. I had been through this before so it was not a big deal. When I went in to have the ultrasound done, which later also included a biopsy, I just had a feeling that this was not routine, a vibe that I may have been picking up from the doctor. I am not sure what it was. And the next day I got the results that it was breast cancer, and it surprised me because I didn’t have any of the traits, the risk factors that are typically associated. I was annoyed. I…you know, it wasn’t…I wasn’t scared. I didn’t have oh my god I’m going to die. I was just annoyed. I think I actually thought I’m too busy to deal with this. I treated it like a project to be managed. And I think I could do that because I didn’t have to deal with kids as well, so I think my experience is pretty unique. You know, it was my husband and myself. My mother did not come from the mid-West to help but I had a very strong support network. I had a friend at USC who had gone through this eight years ago. I knew her/his treatments very well so I had a pretty clear sense of what the process could be.
The first meeting with the oncologist was probably the thing that brought the reality of the severity of the condition because all along I thought, ok, you know, a lot of women my age get breast cancer. I began to think about the women I knew in my immediate friend circle who had it. I began to think about professional friends who either had it or their wives had it. It was truly far too common. When I met with the oncologist and the oncologist started to explain what I had and I asked him about the type and I was told that it was triple negative, that was the first real shock because in the few days between being told I had breast cancer and seeing, you know, the oncologist, I did some research; learned about some of the types; and triple negative is one of the most serious/grave.
Triple negative means that you are negative for the hormone factors estrogen, progesterone, and that you’re negative for the HER2 protein. So it means that if you are on hormonal replacement therapy, it didn’t cause it. It’s a type more likely to be found in younger women in their 40s, women who have smoked, women who are on birth control pills for a long period of time, African American or Hispanic women. And those aren’t my demographics.
With triple negative, one of the characteristics is that treatment options are limited. It’s chemo, radiation, and surgery. There’s no post-treatment medication to take. And my doctor knows the hype that triple negative has, and he did a very good job of putting things in perspective, saying that triple negative has a higher rate of occurrence within the five years than other types, but it you make it beyond five years, the rate of occurrence drops. Once you read something in media, you have an idea that this is something that this is something that might be difficult to treat, and he said we know how to treat this, the confidence was quite reassuring. In general, they do the surgery first to remove the tumor/lump and check the sentinel nodes.
In my case with triple negative we did a sentinel node biopsy first; found out that the cancer had not spread, which meant I did not need as strong of a protocol. Because the cancer had not spread I did not need as strong of a chemo protocol, which was good because they were already talking about Adriamycin, which is a very, very strong type of chemotherapy; you can have it only once. And when you’re talking about a type of cancer that would sort of like to come back, your options aren’t as good.
The other thing to consider was there were starting to be doctors who were looking…the breast surgeons who were interested in doing what they call breast conservation. If they were going to give patients chemo first, they could reduce the tumors, if not go away, such that at best you need a lumpectomy instead of a mastectomy. Before I knew what was involved, I had this, oh, let’s just take these breasts off and give me implants; after all, the number of women in L.A. walking around with implants is pretty common. This is no big deal; until you read what’s truly involved, we are talking about two totally different phenomenons. Breast implants are not the same as breast reconstruction. And once I realized that…once I saw pictures of what some of the reconstruction looked like, I told him/her let’s try the more minimalistic approach first.
I went with the chemo first. When I decided to do what’s called neo-adjuvant chemo, so we do chemo before the surgery, the protocol was four rounds of Cytoxin and Taxotere every three weeks, and that was a pretty common protocol. The side effects of those drugs are hair loss with a pretty serious rate of permanent baldness with Taxotere. I liked my hair, and not only did I like my hair, I wanted to keep the breast cancer more private. And one way of dealing with that and keeping it more private was by not losing my hair. My husband sends me this article about women in Minneapolis who started the Rapunzel Project and that they used this product called Penguin Cold Cap to wear during chemo and it prevents baldness. And it seemed to be a very viable way of keeping my hair because of the chemo I had. It doesn’t work as well with all chemo. They had a phenomenon, nearly perfect.
If you’re going to use the Cold Caps you have to start in advance because there’s some equipment that you need. You have to take this equipment with you to the hospital unless you live in the few places in the United States that have hospitals that have the freezers and the Cold Caps available. You need ice chests/coolers; you need dry ice; you need caps, which you rent, and they have to be shipped, too. And you need a thermal thermometer to check the temperature because the caps are frozen; in my case to minus 31 Celsius (-23.8 Fahrenheit); and the only way to tell how cold the caps are is to have one of these infrared thermometers. You get your dry ice the day before. You put your packs in your ice chests/coolers. I had blankets because the Cold Caps make you cold. You have moleskin to put on your exposed ears…and your forehead so you don’t give yourself frostbite. You take some sort of painkiller ahead of time, to minimize the brain freeze that you get, to make it all very manageable and you take this stuff to your chemo infusion center.
The first two caps are put on and left for 20 minutes, and this is done before the chemo infusion actually starts. You’re getting other pre-infusion drugs so things are going on, but because your head and hair will warm the caps, the first two are only for 20 minutes and then the next ones go on for 30 minutes each. And 10 minutes after the third cap goes on they can start the chemo infusion. So you really do need to have some oncology nurses who are willing to participate in this process. Once the first cap…once the first cap goes on for 30 minutes, all the other caps are 30 minutes.
You have at least one helper, two recommended. The caps are flat and then they have to be molded to your head so that they end up looking like you have a bicycle helmet on. And in order to keep them in place you’ll be asked to put your hand on the forehead while they wrap the back together and then put your hand on the back while they tighten down the straps that go across the front because that’s where you’re likely to get hair loss, if you have a normal shaped head, is along the back of your neck, the nape of your neck; it’s really hard to get the caps to fit snugly back there; and along the sideburn area. So I did lose long hair from here but it was always underneath and it was covered by the longer hair on top. I also had hair loss, sort of the flat part of the back of my head, so it looked like pretty basic male pattern baldness starting back there, but then again I always had enough hair on top that you unless you really looked you didn’t notice that my hair was thin.
The most common side effect is frostbite. If you’re not careful about covering your ears and forehead with really thick moleskin, frostbite is the most common side effect. After I finished the four rounds of chemo, I probably lost about 20 percent of my hair and it was primarily on the back of my head. If you looked at me from the front, you really wouldn’t notice anything at all. Then the hair growth is a very normal pattern; after, oh, a couple of months I noticed that I no longer saw my skin. I finished in September. In about February I had what I called turf hair because it was now growing through the longer hair so I, you know, used a lot of gels in the morning, and at that point I decided to change hairstyles from this very common single length to let’s put layers in, and then that minimized any sense that there were thin areas. And for about 18 months, I had a lot of layers in my hair, which worked well because I had, as most women do, curls after my chemo. My hair was curly before, anyway, but I had gorgeous curls after the chemo, and because my hair was layered, it looked great. When the post-chemo curl effect went away in about six months, I started letting the layers grow out …it was about 18 months…it was about 18 months after my last chemo session that my hair and my hairstyle were back to what it was before chemo.
The resistance to using Cold Caps is somewhat interesting. I wanted to use them because I wanted to keep the condition more or less private. What I learned in the process is that women who do go bald…they have their own gerontological…women who do go bald have their own scalp issues, and they’ll just get rashes. And they have to watch out for sunburn, and there are other side effects, so just shaving your head isn’t as simple as it sounds.
Good Morning America did an episode on Cold Caps and they reached out to the breastcancer.com community; they asked us to send in photos; they asked for a video of somebody using the caps; and we responded; and they did a wonderfully extensive and the first comments on the website were all very negative. It’s like, how arrogant are these women that they wouldn’t do chemo because they would lose their hair.
And, as a somewhat of a tangent, I had flashbacks to being an undergraduate/college student. I was on the speech team at my university/college. Back in the late 70s, early 80s, I had a very successful persuasive speech in the competitive forensic circuit, talking about the problem of insurance companies that were not covering reconstruction for breast cancer patients; that women would have a mastectomy and would want to have reconstruction, and the insurance companies were saying, well, that’s just cosmetic surgery; you know we don’t cover cosmetic surgery. It was the same argument being made all these years later about, well, the woman doesn’t need these Cold Caps because hair loss is just cosmetic; deal with it; go get your chemo; so what if you lose your hair; it’ll grow back. And I wrote a reply. It was one of the few times I ever replied on a website…explaining that it’s more than just cosmetic.
When the oncologist was talking about the various options, and the breast surgeon, there really was not a big difference in terms of impact on recurrence between doing lumpectomy…chemo…versus lumpectomy, chemo, mastectomy, and radiation. It was just not statistically relevant. Had it been more relevant, oh, yeah, I would have had a mastectomy. I wouldn’t have thought twice about it. I am a big advocate of the Cold Caps because it served the need that I had, that a lot of women have, it’s not a need that every woman has but it’s one that many women have to have a sense of control, a sense of privacy, of normalcy and if you have the type of cancer and you are receiving the protocol that works with the Cold Caps, I don’t see a reason why we should be criticized for wanting to keep our hair.