Hello and thanks for joining us. We’ll be kicking off the chat in just a couple of minutes, but if you have a question, you can go ahead and get it in queue.
Hello and thank you for joining us on this webchat.
Let’s start with some questions from readers.
Alyssa, thank you for the question. Looks like you have a strong family history of breast cancer. When we see multiple family members with breast cancer especially that happens at a young age (under the age of 50) we worry about an abnormal gene causing the cancer or hereditary breast cancer. Most common cause of hereditary breast cancer are BRCA1 and BRCA 2 mutation. If some one has a genetic mutation (BRCA1 or 2), they have an increased risk of breast cancer (life time up to 85%) and ovarian cancer (20-40%). So please talk to a genetic counselor and she/he can help you in making sure you are a candidate for genetic testing. Genetic testing involves a genetic counseling session and a blood test.
Thank you for the question. Please see my previous answer also. When someone is young and develop breast cancer, we worry about an abnormal gene (BRCA). So she needs a genetic testing. If she has the gene she is a candidate for bilateral mastectomy. But even otherwise, it is ultimately your sister’s choice, what type of treatment she will have (mastectomy or bilateral).
Lottie, I too have had trouble with this same problem. Often, there isn’t really research to explain why one patient gains weight on a drug and another doesn’t. I’ve gained 30 pounds on breast cancer treatments. My advice would be to keep doing what you’re doing. Eating right and exercising is always better than not doing those things. And be kind to yourself. You’re alive! Even with a few extra pounds, that’s great.
I am so happy that you are doing well and tolerating the treatment well. Kadcyla (TDM-1) is a medicine specifically targeting her-2 positive tumors. It is well tolerated drug and highly active. The main long term side effect is neuropathy and it can cause low blood counts (platelets). If you are tolerating, you should stay on it, until your oncologist is comfortable in giving you a break.
Miranda, your friend is lucky to have a friend like you. In my experience, all cancer patients need help. What your friend needs most of all if for you to be there. Follow her lead, if she wants to talk about cancer or ask for help. Then do that. I always appreciated friends who brought meals over, and who came to sit with me during chemo. Treat her to a beauty treatment she likes, come over and clean her house. Go on a walk. But just be there!
Hello Loral, Thank you for the question. Duration of tamoxifen is being debated now. In the past we used to think 5 years of tamoxifen is optimal. But recent data shows that it is better to do it for total of 10 years. Again, it depends upon your age. If someone is post-menopausal, we recommend an aromatase inhibitor after 5 years of tamoxifen.
Hello Debbie, Thank you for your question. It is not unusual to have flu like symptoms after zometa. Enlarged lymph nodes are not common with this medicine. Usually it should get better in 24-48 hours and if it is not better, please talk to your doctor.
Debbie, I know how scary it is to be going through chemo and suddenly notice a new symptom. My medical team always told me this, “If you’re concerned, call.” It may be nothing, but then again it might not. It’s always better to check. If your medical team isn’t patient with you, or if you get the feeling they think you’re being a pest, get another medical team!
Thank you Janice for the question. I am sorry to hear that you have painful neuropathy, which is a common side effects with many chemo agents such as taxol or carboplatin. If it is significant you should talk to your doctor and sometimes we even cut down the dose. There are many medicines we use, such as Neurontin. But physical therapy could be helpful too.
Janice, I didn’t have the classic foot and hand neuropathy during chemo, but I did have incredible pain in my shoulder. I’d torn a shoulder tendon maybe a decade before, and the shoulder pain during chemo became so unbearable that my doctors were recommending surgery after radiation finished. That seemed so unfair! Strangely, when chemo ended, the pain went away. Many of the things that happen during chemo, the side effects, seem so random and strange. Luckily, your neuropathy is a pretty classic symptom. My fingers (and toes) are crossed for you.
I am so glad you are exercising. I wish all of our patients (and I can say that too!!). Please continue with your exercise that will help with many side effects chemo and radiation including fatigue and cardiac side effects. In triple negative patients, we have data that exercise can improve survival also. Other things you could do is to find out if there is any clinical trial available in your area, for patients like you those who completed chemo before surgery. Keep up the good work.
MS, many fellow patients that I know (through support groups and such) have found really great solace in exercising during treatment. I did too. It made me feel that at least something in my body was working, even if I was battling cancer. The main thing I would say is to listen to your body. I normally cycle, run and lift weights. But during chemo, I didn’t have energy for that. So each day, after I dropped my daughter at school, I’d take my dog on hike up a large hill across from my daughter’s school. Toward the end of chemo, I didn’t have the energy to go to the top, so I’d go halfway. Most hospitals have a physical therapist or someone like that who can answer your question about exercise. Definitely consult your medical team before you embark on an exercise plan. Triathalons and skiing are probably out. But other types of movement will really make a difference.
TDM-1 is novel her-2 targeted medicine, which is FDA approved for stage IV breast cancer. We have several studies looking at the role of this new highly active her-2 medicine in early setting (adjuvant). I think it will be good for you to consider joining the trial. By doing that you are potentially helping you and definitely helping millions of women. Thank you for thinking about a clinical trial.
Thank you for the question. It is not unusual to have joint pain, muscle pain and fatigue with anti-hormonal therapy. Looks like she tried couple of options and she still has pain and poor quality of life. I will consider taking a break from the medicine after talking to your oncologist. As you mentioned, it is all about risk and benefit.
Hey EKT, I would not be afraid of participating in a clinical trial. Some patients seem to think that being a clinical trial means that there’s “no hope.” But really, clinical trials are the only way that medicine moves forward. When I was going through treatment, I participated in 8 clinical trials: one about chemo brain, one about counseling, another that preserved my hair during chemo, so many that I can’t remember. Keeping my hair, through a scalp cooling system called Dignicap was great! Dignicap is now close to FDA approval. That makes me so happy. In my tiny way, I helped to make that option available to more women. If your doctor asks if you’d like to be on a clinical trial, give it serious thought. If you do, you may help yourself. Even better, you may help many other patients.
Hello Stacey, Thank you for your question. I am so glad that you are doing well after the diagnosis of breast cancer. Radiation exposure from mammogram is really low and none of the studies have shown that it can increase the risk of breast cancer. It is very reasonable for you to continue mammogram but please talk to your doctor. Again, it depends upon your age and other medical problems.
Shelley, quality of life is always really important. You’re taking drugs and getting treatment to stay alive. But if life is miserable, what is the point? I can understand your fear for your mother. If her condition worsens, might it be because she refused a certain medication. Remember that everyone is different. It’s like childbirth: We all have a friend who delivered in two hours with no meds. But most of us have more difficulty than that. Listen to your Mom. Make sure she knows the potential downsides to her decision, but then let her make the decision.
Hello Steve, In general we would like to make sure no cancer left behind in the breast (having a negative or clean margin). If you have DCIS or invasive cancer in the margin (margin positive), the chance of recurrence is much higher. Another option is to consider another re-excision (repeat lumpectomy). But I can understand your surgeons reluctance after two lumpectomies
Steve, first realize that your wife is terrified. I remember, not long after my diagnosis, a friend said, “If it was me, I would want to immediately cut it out with a kitchen knife.” I felt that way at first, too. Give her time to express her fear. Cancer feels like such an assault. Many of us just want to get it OUT, no matter what the cost. What each woman feels is necessary will be different. I had both DCIS and invasive carcinoma. I had a lumpectomy because my understanding was that cutting off my breasts would not really improve my chances of survival. But I have friends who have done just that, a double mastectomy, because that was the only thing that would make them feel safe. I can’t fault that. It’s intensely personal. Every woman finds peace a different way.
Hello Karen, I am sorry to hear about your recurrence. When the cancer comes back, I always strongly recommend my patients to go for a repeat biopsy to confirm the ER/PR and her-2 status on the recurrence (in your case, probably biopsy of the liver). Your prognosis will depend upon the ER/PR and her-2 status and the extent of the disease.
Karen, I am so sorry that you have had breast cancer, and that now it has metastasized. I would just encourage you to make the time you have really count. Acknowledge that you’re in a battle, and that often, it’s anything but fun. But try to find a little bit of joy each day. See your friends. Hug your family. Do the things that bring you pleasure. None of us live forever, so seize the day.
Maria, recent studies have shown that 10 years is better than 5 years. But that depends upon your age, stage and risk of recurrence. If someone is post-menopausal we recommend an aromatase inhibitor after 5 years of tamoxifen.
Maria, I have been on Tamoxifen five years as well. I get weird muscle cramps all the time, and I am convinced that the drug has made me gain weight (though the medical jury on this is still out). It really depends on your age, the stage of your cancer and so on, but I would say, if you can tolerate it, stay on it. If your team recommends to change to an aromatase inhibitor, then do that.
Thanks everyone, for your questions.
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