Young Women and Breast Cancer

M. D. Anderson Cancer Center
Cancer Newsline Audio Podcast Series
Date: October 27, 2008
Duration: 0 / 16:03

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Leonard Zwelling, M.D:

Welcome to Cancer Newsline, a weekly podcast series from the University of Texas, M. D. Anderson Cancer Center. The aim of Cancer Newsline is to help you stay current with the news on cancer research and the rapidly changing advances in cancer diagnosis, treatment and prevention and provide you with the latest information on reducing your family's risk of being diagnosed with cancer. I am your host, Dr. Leonard Zwelling. Today, we will be talking with Dr. Karin Hahn who's on the faculty of M. D. Anderson and is the medical director of the Beth Sanders Moore Young Breast Cancer Program. We will also be talking with the Anita Broxson who is director of that program and we're gonna talk about the special concerns of patients diagnosed with breast cancer before the age of 45. So, the obvious first question is, why did we need this specific program for younger breast cancer patients? Karin.

Karin Hahn, M.D., M.S., M.P.H.:

So, at M. D. Anderson in particular we see more young women diagnosed with breast cancer than the national average, so about 13 percent of women diagnosed with breast cancer in the United States each year are 45 years or younger. At M. D. Anderson, we actually see about 20 percent of our patients that we see with newly diagnosed breast cancer are 45 years or younger. So for whatever reason, we have a larger population of young women and it was apparent in the clinic from the experiences I was having there as a breast oncologist that our young women brought with them different concerns, particularly concerns related to fertility, impact on employment, jobs and future health because certainly there we want them to live a very long time after their diagnosis of breast cancer, but of course the data we talked to them about is about 5 or 10 years. Well when you're, 35 that's not very reassuring. So they really had brought different concerns to the table and certainly there had been some--there has been some research suggesting that the needs of younger people, including young breast cancer patients, is different than our more traditional postmenopausal breast cancer patients.

Zwelling:

Let's talk about the overall goals of the program that are specifically targeted at this age group. Either of you can answer. Anita, you want to talk a little bit about the goals of the program.

Anita Broxson, MSN, RN, OCN :

The goals of the program are really to meet the educational needs of these young women diagnosed with breast cancer and to help them and gain some of the networking support that they seek. One of the earlier things that was brought to me a lot when I first came to the program was that we don't have anyone else that we can connect with that's just like us. They felt pretty isolated going to functions or support groups or what have you that were primarily made up of older women. So they said, "You know, they're talking about having--about their grandchildren and more grandchildren. We're talking about having children, where we have little one's. And while they were empathetic, they did not connect with us." So, one of the things is being able to help them network with each other 'cause they do gain a lot of support from that. The other is to foster some collaborative research in the area of young women with breast cancer. Whether that is the medical type of research or the psychosocial type of research.

Zwelling:

Let's talk a little bit about the diagnosis in these patients. There's absolutely an article in the New York Times this morning by Jane Brody talking about the diagnosis of breast cancer. Is the diagnosis often missed more in these patients than in older women? Dr. Hahn?

Hahn:

Certainly our experience and certainly my experience is that they tend--it's a combination of patient factors and medical system factors that younger women, particularly without a family history, are not expecting to develop breast cancer. And most, as Anita has already pointed out, the media and a lot of both--a lot of what we talked about regarding breast cancer is older women with breast cancer, so they're not expecting that this lump in their breast that they feel is really anything. And often, if they do see a physician, they're usually reassured that it's nothing. In order to come back in 6 weeks or 8 weeks and then even after that it can get pushed off, and we see it a lot in our patients who are lactating or pregnant in particular have real delays in diagnosis because they're mistakenly told that they can't have mammograms, that it's likely to be a blocked milk duct or some other explanation which, sure the majority of women aren't going to have breast cancer but for the small proportion that will, it's clear that they--particularly in the pregnant and lactating women who present with later stage disease for that very reason.

Zwelling:

Is there any specific indicator of when mammography or sonography or some other diagnostic test really should be pushed for by a patient even if the doctor is saying we can wait 6 weeks?

Hahn:

Certainly, looking at someone's family history and also their potential risk factors for breast cancer, are they someone who's been treated with radiation for Hodgkin's disease. Are they someone who has had hormonal exposures that may be different than the average woman of that age? For example, people who may have had DES exposures where it's not quite clear what that risk was to be exposed to D [simultaneous talking] diethylstilbestrol in utero which luckily we don't see any--you know, we don't have those new cases happening. But, what about them might make them at higher risk, but the other piece of that puzzle is any lump that persist more that 6 or 8 weeks. If you image it and it still is unclear that this is truly a benign lesion, someone needs to biopsy that lesion and not wait 6 months to repeat the mammograms or repeat an ultrasound, because now we have more tools now too. We have not just mammography, we have breast ultrasound and we have breast MRI. So between those 3 tools, often you can get a good sense of what is truly benign looking. But if it's remotely suspicious, those tools are not going to help us. And so I think the best tool then becomes look at it under the microscope.

Zwelling:

Okay.

Broxson:

Persistence is one of the messages. I think a lot of young women give to other women is to be an advocate for yourself and be persistent in getting that next opinion if you feel that it's not being, you know, given proper attention. And in particular, when it comes to inflammatory breast cancer, although very rare, we seem to seek quite a bit of it in the younger women.

Zwelling:

What's the major diagnostic findings of inflammatory breast cancer? What would a patient see?

Broxson:

They might see a rash looking area, an area that's maybe thickened or feels different than the rest of the breast. It might even look like a mosquito bite to start with, but it doesn't go away and it stays, and Karin can speak more to--when you seek attention for that, which is pretty quick.

Hahn:

Yeah, I think that's another one that's often misdiagnosed or usually by a few weeks at least that most women present with a red swollen heavy breast, and often you don't feel a lump. There is no lump to feel, and that I think also throws people off and that often becomes a problem of being diagnosed with mastitis or some type of infection in the breast. Most women will have undergone at least one or 2 cycles of antibiotics or courses of antibiotics before they, you know, either they keep advocating or their physicians decide that it's warranted to now look into why this isn't getting better.

Zwelling:

Let's talk a little bit about genetic testing. When is genetic testing appropriate for a woman either with or think she may be at risk for breast cancer, and what genetic tests are we're looking for?

Hahn:

So, we're very fortunate here at M. D. Anderson, we actually have a clinical genetics department and who are very involved in the treatment of our--and management of our breast cancer patients and their family members. So, with regard to people who already have a diagnosis of breast cancer, men and women, their family history plays a huge role. So, who in your family in addition to you has a history of breast and or ovarian cancer? And then not just who, who, but what age were they diagnosed if they're able to find that information. What we sometimes hear, and that's a reflection of where we were as a culture, is that sometimes patients will say, "Well, my grandmother had a female cancer." And you know, we have to go on the, "That's all we know". But usually they take a--the first thing they do is genetic counseling which is to take a very detailed family history. And unfortunately or fortunately, I'm not sure how to take it but we have the incredible shrinking family syndrome going on in the country and that people don't have 11 or 12 siblings, you know, brothers and sisters and each of them have 6 kids. The family trees now are getting smaller and smaller. So sometimes when they try to take a family history, you can't really take much of a family history. There's one brother or one sister, you know, a couple other aunts and uncles' maybe, and so sometimes the lack of family will actually spur them to recommend genetic testing because they don't know.

Zwelling:

The genetic testing we're talking about is on blood?

Hahn:

Right, so the genetic testing is not done on any tumor specimens, it's done on a--and it's usually, you try to get someone who's had the cancer tested. So, if you're the person with breast cancer, not your sister who's worried or your mother who's worried, they might get it, you're actually the best person to be tested. Why? Because if you don't have the gene, chances are they don't have the gene. The genes being the 2 most common genes we test for are called BRCA 1 and BRCA 2, meaning breast cancer 1 and breast cancer 2 genes, and they are the 2 that are most associated with the hereditary breast and ovarian cancer family syndromes. They're not common. Less than 10 percent of breast cancer is truly hereditary where we can point to one gene as the cause.

Zwelling:

In these patients, one of the things that's being discussed more now is if the gene is found and the patient may or may not have breast cancer yet, is the question of whether bilateral mastectomy or bilateral oophorectomy, which is removing the ovaries, is to be considered and that's, I suspect, an individual decision between the patient and the doctor.

Hahn:

Right. And actually that plays a role in a lot of our young women with breast cancer 'cause often it's their mothers who've had cancer and then they may--and they have sisters. What we actually recommend for younger women, 40 and younger who have breast cancer is that they undergo genetic counseling because that's not normal, right? That's a small proportion that's even smaller than the 13 percent nationally, so there's a real concern that that may be why they develop breast cancer in such a young age. And then what do you do to protect them for the rest of their lives against developing another breast cancer or ovarian cancer, and then often, the genetic counseling group then works with appropriate family members, appropriate being they don't counsel children. So, if you have children under the age of 18, they will not test that child's blood to see if they're a carrier of a mutation that would predispose them to breast or ovarian cancer. Why? Because those diseases don't occur in that age group, at that age, and we don't know the psychological impact and how someone that young would process that information.

Zwelling:

But the parents have the information and they can act on it when the child grows up.

Hahn:

Right. They can decide what they want to disclose to the child as they age and then how, you know, it's all up to the child whether or not they actually get tested, but it makes a big difference in how they might be screened if they're not willing to be tested. So, those may be young men and women who, you know, because men with breast cancer often have a gene--well, not often, but 15 percent of them do have a genetic mutation.

Zwelling:

And it's about 1 percent of the overall breast cancer in men.

Hahn:

Right.

Zwelling:

Let me just touch upon one issue before we conclude, which is the question of psychology and body image in this group of patients. Anita, I think you probably can comment on this. It's going to be a different mindset as you were alluding to before in this group of patients opposed the older women with breast cancer. So, how do we--do we have special support groups for that and is there other considerations we have to take into account when taking care of younger women with breast cancer?

Broxson:

Well, you know, I think that reconstruction is a big part of their treatment decision making. They do want to know more about reconstruction and have those options. So, one of the things that we do try to do in our newsletters in our workshop is provide that information in as much detail as we can and offer them the opportunity to ask questions of the experts about reconstruction. But, it is definitely foremost in the minds of many of them just from the anecdotal comments that I have received in focus groups, some of the questions that we get back during our workshops and so forth. So, I know it's at the front of their minds.

Zwelling:

And you counsel the husbands as well, the whole family?

Broxson:

We don't really counsel, we just provide the educational support and in that way we have given resources for the spouses and the families through the workshops by having speakers come like Mark Silver, who wrote Breast Cancer Husband, to speak. For children, we've had one of our own here, Martha [inaudible] Brenner come and speak about how to talk to children. So we really are a network, you know, try to just bring everybody together to get the most common concerns addressed.

Zwelling:

Well, thank you both today, Dr. Karin Hahn and Anita Broxson from the Beth Sanders Moore Young Breast Cancer Program at M. D. Anderson. Listeners, if you have questions about anything that you've heard today on Cancer Newsline, please contact askMDAnderson at 1-877-MDA-6789 or online at www.mdanderson.org/ask. Thank you Dr. Hahn, thank you Anita, it has been very informative. Please listen next time to our next episode of Cancer Newsline.

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