Ask-the-Expert Online Conference: Young Women and Breast Cancer

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Ask-the-Expert Online Conference

The Ask-the-Expert Online Conference called Young Women and Breast Cancer feautred Lynn Schuchter, M.D. and moderator Jennifer Armstrong, M.D. answering your questions about the special concerns of young women who have been diagnosed with breast cancer.

Editor's Note: This conference took place in April 2006.

Diagnosis with no family history or risk factors?

Question from Lindy: Recently I heard of a 24-year-old young woman being diagnosed with breast cancer. And this was someone with apparently no family history of the disease or any of the risk factors. How common is this?
Answers - Lynn Schuchter Breast cancer does occur in young women. It is still much more common in older women and women over 50, but roughly 10% of breast cancer is in very young women. When we see someone at this age, 24 years, even if there is no family history of breast cancer we are still suspicious that this could be a hereditary form of breast cancer and we're concerned there may be a mutation in BRCA1 or BRCA2. So it is uncommon to see breast cancer in someone this young. We treat breast cancer the same way in younger women as we do in older women but we would be very interested in this woman's family history of cancer, and whether she is an Ashkenazi Jewish woman.

Demand tests with breast lump/change?

Question from Bweeden: Young women being diagnosed are still saying that their concerns are still being originally dismissed with "you are too young for breast cancer." What type of testing should every young woman demand she receive as the bare minimum when she presents a breast lump/change to a physician? Thank you.
Answers - Lynn Schuchter I think she needs a good physical examination by the doctor. Then appropriate X-rays should be ordered and that could include a mammogram with possibly an ultrasound. It is true that breast cancer can occur in younger women, so it is appropriate to pursue things that they are concerned about in a breast exam. Having said that, it is very common to have benign (no cancer) in a bump or lump that a woman feels in her breast. But it is important to pursue the evaluation.
Jennifer Armstrong, M.D. I really agree with Dr. Schuchter that any woman with a breast lump or change in her breast needs attention, regardless of her age. While benign results are more likely than anything else at any age, because of the potential risk of breast cancer at any age, evaluation is important. The younger a woman is, the more likely ultrasound is to be used with greater emphasis. This is because mammograms are particularly limited in younger women who tend to have denser and more cystic breast tissue. As Dr. Schuchter mentioned, oftentimes more than one test will be used in conjunction. Mammograms are not recommended as a screening tool in women without palpable abnormalities before the age of 40 or 50 (depending on different screening recommendations and different organizations).

What's after tamoxifen, if still having period?

Question from DeeC: If you have had breast cancer and are on tamoxifen for 5 years, what is next after that if you are still getting your period?
Answers - Lynn Schuchter That is an excellent question. I would say there is some controversy about how to best manage that individual and there is not a consensus on how to manage that patient because we don't have clinical trials to specifically guide us in treatment recommendations. One possible option is to take a medication called an aromatase inhibitor like Arimidex (chemical name: anastrozole) or Femara (chemical name: letrozole), in conjunction with a medicine to put the patient in menopause, like Zoladex (chemical name: goserelin acetate) or Lupron (chemical name: leuprolide acetate). The difficulty here is that women who are postmenopausal who have taken 5 years of tamoxifen can then be offered an aromatase inhibitor and there is clear data that those women benefit from an additional five years of this hormonal therapy. This approach is associated with improvement in outcome. However, the mechanism of aromatase inhibitors in terms of its effectiveness against breast cancer is only useful for women who have gone through menopause. We have no data on efficacy of using these medications in premenopausal women and they would not be as effective in premenopausal women. One possibility is to put the patient into menopause, and that can be done with medicines or by taking the ovaries out and then using aromatase inhibitors. But this is not completely supported by data, so one would need to look at the woman's overall situation — would she benefit from 5 additional years of hormonal therapy? Are there other competing issues, such as not putting her into menopause for health issues? So this is an excellent question, and one you should definitely speak to your doctor about.
Jennifer Armstrong, M.D. I think Dr. Schuchter's detailed response really reflects our current situation. As she stated, we do not currently have evidence that anything after 5 years of tamoxifen benefits women who have had breast cancer and remain premenopausal. Dr. Schuchter elegantly described the reasons why we hypothesize and consider chemical ovarian oblation to bring premenopausal women into a menopausal state in order to change the hormonal milieu and potentially increase benefit from aromatase inhibitors. For most women who remain premenopausal after 5 years of tamoxifen, they will be considered as having completed their adjuvant therapy. (Adjuvant therapy is therapy given after surgery with curative intent.) They can certainly applaud themselves for their accomplishment.

Resume normal periods after chemo? When?

Question from LinVW: What is the percentage of women age 35-40 who resume normal periods after chemotherapy? And how long on average does that take?
Answers - Jennifer Armstrong, M.D. The younger a woman is when she receives chemotherapy, the greater likelihood that she will resume normal periods after chemotherapy. The time this takes varies, and can be anywhere from 1-12 months. The likelihood of resuming normal periods is also affected by the type of chemotherapy regimen received. One of the more common regimens used today (AC, which stands for Adriamycin [chemical name: doxorubicin] and Cytoxan [chemical name: cyclophosphamide]), allows more women to resume normal periods than previously used regimens (such as CMF, which stands for Cytoxan, methotrexate, and fluorouracil). In summary, most women age 35-40 will resume normal periods within 12 months after chemotherapy.

When to talk about experience in new relationship?

Question from SKG: At what point in a dating relationship should a breast cancer survivor reveal her health history? We don't want to scare them away too soon, yet it's hurtful to get involved and then have them run away when they find out.
Answers - Jennifer Armstrong, M.D. It strikes me that this is a particularly important question. We had a conference last month about Coping with Your Changing Feelings and Relationships and this question came up then. I refer you to that transcript for a more detailed discussion. Our guest last month, Dr. Lydia Schapira, discussed that often when a person feels comfortable in a relationship, and/or when they feel it no longer feels right NOT to be discussing it, that is usually a good time to initiate the conversation. It can also be helpful to think about at what point in a relationship you would want your partner to disclose information to you. It is certainly important to have a support system with whom to discuss these issues.
Lynn Schuchter It is a very good question, and there is no one right answer about how or when to do this. I would agree with Dr. Armstrong's answer in that Dr. Schapira is really outstanding in this field. Look at the transcript closely, because she has wonderful insight into this area, and she really has quite a bit of wisdom that is useful for all of us.

Testing safe for pregnancy?

Question from Mtm1975: I'm 7.5 months pregnant and I found a lump in my right breast. Are the tests that my doctor is setting up really OK for my baby?
Answers - Lynn Schuchter We don't know what tests have been ordered, but we would generally start with ultrasound because that can be very informative about what can be happening with the breast. Ultrasound is definitely safe for the baby. Generally we avoid X-ray imaging but in the later parts of the pregnancy, some of these tests can be safe. Generally an ultrasound would be done, and that is entirely safe.
Jennifer Armstrong, M.D. It can be difficult to believe that so many tests can be safe while pregnant. Nevertheless, as Dr. Schuchter described, many of these tests not only can be performed safely during pregnancy, but in the few instances where breast cancer is diagnosed, that breast cancer can even be treated safely (for mom and baby) during pregnancy, Again, it's helpful to have a support network to help maneuver through these situations.

Pregnancy okay after radiation, tamoxifen, Zoladex?

Question from IRossi: I'm 36 years old. I had an invasive breast cancer two and a half years ago with no lymph node involvement. After surgery, I had radiation followed by two years of tamoxifen and Zoladex. I would like to get pregnant again. Is that safe?
Answers - Lynn Schuchter This is another very complicated question. In general, women who have had breast cancer can safely become pregnant and in general the available data and evidence suggest that pregnancy itself does not alter a woman's risk for recurrence of her breast cancer. Having said that, it still is complicated in terms of planning the timing of a pregnancy: how soon one becomes pregnant after a diagnosis of breast cancer and the possibility of compromising the overall plan for treatment by becoming pregnant. In women who have received chemotherapy, we generally like to wait at least one year from chemotherapy before becoming pregnant. In your specific question, you may be considering stopping your hormonal therapy earlier than the planned five years to become pregnant. That is a very complicated decision. So here we are weighing your ability to become pregnant as you become older, and as one becomes older it is more difficult to become pregnant so we see competing pressures. If you complete the entire 5 years of your treatment, you'll be older and have a more difficult time getting pregnant. On the other hand, if you stop your hormonal therapy earlier in order to become pregnant, then you alter your overall treatment plan for the breast cancer. Certainly women should not become pregnant while taking tamoxifen and Zoladex as they could have untoward effects on the fetus. So this is a complicated conversation that you should have with your oncologist and your gynecologist, looking at benefits and risks. I think medical oncologists are more open now to discussing these issues with women. It's not an uncommon situation, and requires thoughtful conversation with your doctors.

Health insurance affected by genetic testing?

Question from MarshaB: I was diagnosed with breast cancer at age 39, my mother at age 29 (dead by age 31) and her mother at age 47 (dead by 49). I also have a cousin on my mother's side who was diagnosed at age 32. I am considering having genetic testing because I have a daughter who is now 23. What implications might there be on her getting health insurance in the future if in fact I am a carrier?
Answers - Lynn Schuchter I would strongly recommend that you consider genetic testing based on the information you have provided. You and your family may have hereditary breast cancer. This has important implications for your ongoing treatment and evaluation and that of your children. Currently there are fairly good measures and legislation that prevent discrimination in this regard. I think the decision about pursuing genetic testing should not be based on fear of discrimination in terms of health insurance, life insurance, or employment.
Jennifer Armstrong, M.D. It is certainly understandable to be concerned about these issues. In general, I usually explain to my patients that their own history of actual breast cancer usually already carries whatever weight they are concerned about when insurance companies view their family history. Whether a patient has a genetic mutation or not is often less important to an insurance company than the fact that they've already developed breast cancer. This is quite different than if your daughter were to be tested herself. But in terms of your daughter getting insurance, you have a history of breast cancer regardless of the results of the genetic testing.
Lynn Schuchter Marsha, your family history is very compelling. You have a number of relatives with breast cancer at a young age and regardless of whether you decide to do genetic testing (which I would recommend), aggressive surveillance of you and your family members for breast cancer and/or ovarian cancer is very important.
Jennifer Armstrong, M.D. I really agree with that.

Annual digital mammography vs. genetic testing?

Question from Hally Jones: I am a 34-year-old living in the U.K. whose mother died from breast cancer at the age of 42. I am wondering whether to pay privately to have full field digital mammography done every couple of years to ease my worries on also developing the disease. Please could you advise if this is a helpful undertaking for me, or should I be looking more at preventative methods, i.e., genetic testing? Many thanks.
Answers - Lynn Schuchter In general, we often recommend screening for women with a family history of breast cancer at a younger age than we recommend for the general population. This would mean screening a decade earlier than the individual in the family who has been diagnosed with breast cancer. So with your situation, I would recommend regular surveillance with mammography, possibly digital mammography which may appear to be a more useful test than regular mammography in younger women or women with dense breasts. MRI is another way of evaluating the breast, and is sometimes used in this situation as well. It may be useful to try to find a specific center in the U.K. that is monitoring women with familial breast cancer as you may be able to take part in a clinical trial looking at surveillance. I do think you are in a different situation than the average woman and should push your doctors and the health system there for appropriate screening.

Fear of recurrence overwhelming?

Question from Meri28: I was diagnosed with breast cancer at 25 while I was pregnant. Luckily, I was a Stage 1. How do I not let the fear of recurrence take over my life? I am 3 years out and I still feel like I think about it every day, every minute of my life. Any suggestions?
Answers - Jennifer Armstrong, M.D. It sounds like you've been through a lot. It sounds like you were young at the time of your diagnosis, and being pregnant at the same time may have made you feel even more vulnerable. I am concerned that you are still feeling that you think about it every day. While many of these feelings are natural, if they are interfering with your ability to enjoy your life, you may need more support to help work through some of what you're feeling. For some people, friends or family can offer that support. For many, a professional therapist can be particularly helpful.
Lynn Schuchter Remember that the majority of women who were diagnosed with breast cancer are [successfully treated], and the fact that you're 3 years out without a recurrence is fantastic. Likely hormonal fluctuations from pregnancy and sleep deprivation may contribute to how you're feeling. But with some more time, remarkably this does get somewhat easier.

Will libido return after treatment?

Question from Kate: I'm 36 and had a healthy libido before receiving chemotherapy (Adriamycin and Cytoxan). I still have Taxol, radiation, and Herceptin to go. Will my libido return? When?
Answers - Lynn Schuchter Another great question, and yes, your libido will return but there's no doubt that the diagnosis of breast cancer and the treatment are altering your libido. There are so many different factors that affect our interest in sex, whether we feel sexy, whether we're interested in sex and so many of those factors occur at the same time for a woman who's diagnosed with breast cancer. So the chemotherapy and the medicines to prevent nausea and the fatigue associated with these treatments can profoundly affect one's interest in sex. Taxol (chemical name: paclitaxel) is not going to help this, but you will recover. While you're taking Herceptin (chemical name: trastuzumab), that has much fewer side effects so we'd anticipate that after the chemotherapy part of your treatment, your libido should return. If it doesn't, there are explanations in terms of how these treatments affect your hormone levels and whether you end up on hormonal therapies. This would be another good conversation to have with your oncologist or gynecologist. It is important to discuss this, because there are sometimes treatments we can consider. Vaginal dryness is not an uncommon side effect of these treatments, and there are strategies to deal with this. So it's important to pursue this and discuss it with your physicians if you're comfortable, or the nurse. We recognize that this is important and that it is a consequence of treatment. I think many physicians now have a greater sensitivity to this topic.
Jennifer Armstrong, M.D. Again, I refer you to last month's online conference where we touched on some of these issues which are so important.

Better testing for undetected cancer?

Question from Rita: I found a lump myself. The mammogram and sonogram did not show anything. However, when the biopsy was done, it was cancer. Is it common for the cancer to be undetected? I am concerned that with minimal margins, more cancer may be present. Are there better testing methods for those of us that had cancer undetected by mammogram or ultrasound?
Answers - Lynn Schuchter Rita, you bring up an important point: that there are limitations to our tests. Your situation underscores the importance that when a lump is detected and even if the mammogram is normal, a biopsy still needs to be done. This is a very, very important point. MRI of the breast can be used in this situation, and can help to determine whether it's breast cancer, and if so, the extent of the breast cancer. However, generally we look at the margin on the pathology report and if there is a question about margins, it may be necessary for more surgery to be done. MRI imaging of the breast is sometimes used to get a better idea of how extensive the breast cancer is. But it is not available at all institutions or hospitals, so sometimes it's necessary to go back in for more surgery which is really the most definitive way to make sure all the cancer has been removed.
Jennifer Armstrong, M.D. When I have patients whose cancer is not found with mammogram or sonogram, I recommend annual screening with MRI. Oftentimes I have to write letters to insurance companies to get this covered, and unfortunately these letters are not always successful. But I think it's important for MRI to at least be considered as a future screening tool.

Support groups for kids?

Question from Lizzy: I have completed chemo and radiation therapy for breast cancer. My 8 year old daughter is now acting out and having problems in school. She has seen a psychiatrist and had medicine prescribed. However, that hasn't helped. Are there support groups for kids?
Answers - Jennifer Armstrong, M.D. It sounds like you and your family have been through a lot. There are support groups for kids. has more information on these support groups. Kudos to you for recognizing these issues and seeking help for your daughter. I encourage you to discuss with your child's psychiatrist, especially if you feel the treatment is not currently helping. It can be difficult to sort out problems in childhood and family experiences. Sometimes counseling for the entire family (and the one person for whom help was originally sought) can be helpful. Again, some of these issues were touched upon in last month's conference, and I encourage you to read through the transcript from the Coping with Your Changing Feelings and Relationships Conference. But hang in there. Your daughter is lucky to have such an involved parent and attentive mom. Be sure to attend next month's conference, which is Talking with Kids about Breast Cancer.
Lynn Schuchter It may be worth mentioning this to your medical oncologist as there may be new resources in the oncologist's office that could be helpful. Sometimes there are psychologists or social workers with specific expertise that may be able to work with you or your child. Breast cancer really affects the whole family, so support from many avenues can be helpful.

Cancer at young age more aggressive?

Question from Carr: Does getting breast cancer at a young age mean the disease will be more aggressive and harder to fight?
Answers - Lynn Schuchter Not necessarily so. The aggressiveness of breast cancer is mainly related to the size of the tumor, whether or not lymph nodes are involved, whether the breast cancer expresses the hormone receptors — estrogen receptor, progesterone receptor, and HER2/neu. Breast cancer can be more aggressive in younger women as opposed to women who have gone through menopause, but there are features of breast cancer that are more relevant to whether the cancer will be aggressive than just the age at diagnosis.

Cancer screening for younger women?

Question from DorisS: If current guidelines recommend mammography screening begin at age 40, then how can younger women be diagnosed? Our health care system doesn't seem to have a way to screen for breast cancer in women younger than 40.
Answers - Lynn Schuchter The issue about screening and what makes an effective screening test and who should be screened really has to do with large trials that try to show that screening has altered mortality rates from a cancer. Screening guidelines are really sort of our public health recommendations. Because breast cancer is more common in older women, and because mammograms are a better test in older women because their breasts are less dense, the studies show screening is more effective in older women. So this is complicated because we do see breast cancer in younger women but as we begin to screen younger and younger women, we run into the problem that tests like mammograms are not going to be very useful. We end up having a lot more false positives as one possibility. So we try to make screening guidelines based on hard evidence that the test is useful and that it detects the cancer at an early stage, and that results in better overall survival rates. If there is reason to think a younger woman is at higher risk for breast cancer based on previous abnormal biopsy or family history, it may be appropriate for her to start screening at an earlier age. Screening can be flexible so younger women can be screened. We just don't have evidence that screening younger women with mammograms is a useful thing to do. Tonight we've heard from lots of young women with breast cancer and in some of those situations mammogram was probably helpful and in others it was not. So we're looking at lots of avenues in research — better ways of identifying who is at risk for developing breast cancer so this type of research is crucial as we try to discover why younger women are developing breast cancer. There is a tremendous amount of research going on right now. It is critically important, and hopefully we will get better tools to diagnose all women and hopefully develop better methods for younger women.
Jennifer Armstrong, M.D. In summary, the salient issue is not then why mammograms are not recommended for women under 40 (mammograms are not as effective screening tools in younger women); the key issue is can we develop more effective screening tools for younger women, keeping in mind Dr. Schuchter's key points that screening tools are particularly difficult to develop when the risk of disease is low (and the risk of developing breast cancer is low in most young women).

Clinical trials for premenopausal women?

Question from Perl: There are many clinical trials involving postmenopausal women with breast cancer, but we don't often read about clinical trial results for premenopausal women who have breast cancer. What trials are being done for us?
Answers - Lynn Schuchter I think I would slightly rephrase your question, Perl. What you have heard a lot about is specific hormonal therapy trials with aromatase inhibitors, which have targeted women who are postmenopausal. We have had the result of several clinical trials in the last several years which have used aromatase inhibitors, medications like Arimidex and Femara, which are only used for women with postmenopausal breast cancer. However, all of the other clinical trials that utilize chemotherapy and utilize Herceptin are done in both premenopausal and postmenopausal women. So there are clinical trials available for premenopausal women focusing on chemotherapy and Herceptin and those studies are for both premenopausal and postmenopausal women. There is a trial available for premenopausal women with hormone-receptor-positive breast cancer (estrogen receptors and progesterone receptors) and these trials are looking at the optimal way to utilize hormonal agents such as tamoxifen and aromatase inhibitors with ovarian suppression. These clinical trials look very promising, as we are attempting to use some of the newer agents in premenopausal patients. These clinical trials are available nationally; they may be available to you locally at your institution. They are asking important questions about the optimal hormonal treatment for premenopausal patients. We traditionally have used tamoxifen for hormone-receptor-positive cancers and we are looking to see if some of the newer strategies may be useful for this group of patients. It is so important for women to consider a clinical trial, as all the advances that we have made in breast cancer treatment are the result of brave women participating in clinical trials. This is the only way the field can move forward and we can improve survival rates for all women with breast cancer.

Why so many young women being diagnosed?

Question from Linda: Why are so many women in their 30s and 40s developing breast cancer? I'm 41and I know 5 other friends in my town who are battling breast cancer like me right now.
Answers - Lynn Schuchter Another great question with a lot of talented researchers trying to understand this issue. One question is whether it's true that there is an increase in incidence of breast cancer in younger women. More women are undergoing screening tests, and screening tests are becoming better. So it's possible we are just detecting more breast cancer because we're doing a better job of screening. But there is some research looking at one's total estrogen exposure in life. We know now that women begin menses earlier than they did 50 or 75 years ago and there has been interesting statistical modeling looking at greater lifetime exposure to estrogen that could explain the rising rates of breast cancer. Whether there are environmental factors that may be playing a role here, whether there are dietary changes, these have been postulated, but it's not clear how much these factors may affect this question. We just don't know the answers yet.

Breast cancer also passed on father's side?

Question from MarkH: Can breast cancer be passed on from father to daughter if there has been some history in the family on the father's side?
Answers - Lynn Schuchter Yes, absolutely. We used to think only the mother's family history was relevant. The 2 breast cancer genes BRCA1 and BRCA2 can be passed from the mother's or the father's side, so a father's family history of cancer is totally relevant. So yes, hereditary breast cancer can be passed from the father's side. There is a greater risk of prostate cancer in families with BRCA mutations, and also male breast cancer is seen in the BRCA2 mutation families. So when doctors ask for family history of cancer, we want information from both your mother and father.
Jennifer Armstrong, M.D. Great points! Thank you very much.

Breast cancer passed along in womb?

Question from Jess: My mother was diagnosed with breast cancer in her early 40s (just a few years after giving birth to me), which means it is quite possible that the tumor was growing inside of her while she was pregnant. I am wondering if that would have increased my risk even greater (beyond the normal genetic thing) since her diagnosis was so close to my birth? I have not had genetic testing as of yet.
Answers - Lynn Schuchter No, there is no concern that you could have breast cancer now that occurred while your mother was pregnant. Your risk of breast cancer now is related to the chance that your mother had breast cancer and possibly any other relative that had breast cancer. Breast cancer and other cancers don't travel through the placenta and affect the baby, but in patients with advanced cancer during pregnancy, it will be known within days or weeks or months if the baby was affected.
Jennifer Armstrong, M.D. I agree, Jess, that your risk of breast cancer is not increased from in utero effects, but rather just from the fact that your mother had breast cancer at all, and that you can benefit from screening with mammogram.

Single and wanting to date, but low esteem?

Question from Shelley: I'm 36 and just completed treatment in January. I used to feel attractive but since the cancer I have lost my self esteem. Weight gain, scarred body, short hair — I don't know this person and I'm single and want to date. Any suggestions?
Answers - Jennifer Armstrong, M.D. You've been through a lot in the past months. Many of the things that you are feeling are certainly understandable. Many people describe their cancer experience as a journey, and feelings can change many times at many points along this journey. It's important to have a strong support network and people you can talk to about how you're feeling. Dating can be difficult under any circumstance. Some people find more comfort, especially initially, in group situations. Hopefully as you heal from your recent experiences, you will find yourself able to reclaim your self-esteem and appreciate your beauty.
Lynn Schuchter Although this is something that is said often, time does heal. It is remarkable how different you will feel and look six months from now. I think there's no other cancer that at the time of diagnosis and treatment affects a person so much at the core of who they are. For a woman diagnosed with breast cancer, she may have extensive surgery on the breast, experience hair loss, go into menopause — so many things in such a short time. So it's an assault at every level. But you really will heal, and your cancer can be a turning point where you are actually better at the end of all this. It's remarkable that this occurs, but one can prioritize things in one's life. You will get back to yourself, and maybe at a better place. There's often fear at the end of treatment. I really believe you will feel better. It's nice that it's spring and a time of renewal outside, and I hope you find that renewal internally as well. In my experience and Dr. Armstrong's experience, we're in awe of you and what you're able to experience. It's remarkable what you're able to do, and we wish you good courage and great strength, and wish you well.

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