Answers to Anonymous Questions from Outcomes4Me Users
Periodically, we answer questions from Outcomes4Me users that were submitted as anonymous. Here are the most recent questions/answers, broken up by category. Numbers in parentheses correspond to reference links below.
Feel free to comment below if you have an experience that is relevant to any of the questions.
Question: How do I talk to my doctor about the newest treatments and ask if they are right for me?
Answer: It’s great that you are being proactive in your care. There are many factors to consider when choosing a treatment that is right for you. First, it is important to understand whether the newest treatments are approved or applicable to your specific diagnosis. You can find this information on the Outcomes4Me app. In addition, you may want to ask about the treatment effectiveness, its schedule, and its side effects. You may want to know if you can continue to work and if there are any precautions you might have to take.
When talking to your doctor, make sure that you ask for clarification on anything you don’t understand. Ask for the “next steps” and don’t be afraid to take a moment to process the information. YOU are in charge of your treatment choices; find a doctor you trust and feel comfortable working with to make these decisions together.
You can read more about communicating with your oncologist here: https://www.curetoday.com/community/martha-carlson/2017/10/improve-communication-with-your-oncologist
Question: The app doesn’t allow us to specify the type of breast cancer (in my case invasive lobular carcinoma). Isn’t this relevant information?
Answer: The Outcomes4Me app has incorporated the NCCN Guidelines® for Invasive Breast Cancer. The app is designed to ask the minimum number of questions needed to provide the treatment recommendations as per the guidelines. In this case, invasive carcinoma is sufficient information.
As we incorporate various sources in the future, this information may become relevant and integrated into the app.
QUESTION: Does a higher bmi have anything to do with survival rates in mbc?
Answer: Overweight and obese women have a high risk of being diagnosed with breast cancer; extra fat cells increase the amount of estrogen in the body (1).
There have been limited studies looking at impact on BMI on survival rates in MBC. A 2013 study of 489 MBC patients on first-line chemotherapy stated BMI did not affect progression-free survival or overall survival (2). A 2010 study published in the Journal of Clinical Oncology found that being overweight or obese at diagnosis didn’t affect survival for MBC patients (3).
You can read more on this topic here: https://www.breastcancer.org/research-news/20110610
However, being overweight can worsen symptoms like joint pain, fatigue, and general pain (4). You can work with your doctor to make a plan towards a healthy weight.
Triple-Negative Breast Cancer:
Question: I have a 1.2 cm triple negative breast cancer, grade 2, 1 lymph node biopsied and positive for cancer. Trying to find the % that chemo would help.
Answer: Based on the information you provided, chemotherapy is the recommended treatment option according to the NCCN Guidelines® for Invasive Breast Cancer.
In addition, data presented last week at the European Society of Medical Oncology showed that adding immunotherapy to chemotherapy increased the pathological complete response rate (pCR) from 51.2% to 64.8% (5).
You can look at your options for treatment under the Treatment section of the Outcomes4Me app. If you are concerned about your risk of recurrence, you should talk with your doctor and ask if any further testing should be performed.
Question: What are the percentage of triple negative breast cancer recurring?
Answer: In the first five years after diagnosis, the local recurrence rate for triple-negative breast cancer (TNBC) is about 10-25% (6,7). TNBC tends to recur more often than other breast cancers, but after 3-5 years, the rate of recurrence drops significantly (8,9).
You can reduce your risk of recurrence by not smoking, limiting alcohol consumption, and exercising.
Question: My Dr said my prognosis is excellent. Yet everything I read about HER2 positive breast cancer sounds like it’s not curable and high chance of recurring. I am about to start chemo and scared to death. How long can I expect to survive?
Answer: HER2-positive breast cancer tends to be more aggressive than cancer that is HER2-negative (10). However, there are targeted therapies like trastuzumab (Herceptin) and pertuzumab (Perjeta) that work effectively to target HER2+ breast cancer cells.
Survival rates vary based on where the cancer has spread (10). Localized HER2+ breast cancer has a 5-year survival rate of 98.8%, HER2+ breast cancer that has spread to a lymph node has a 5-year survival rate of 85.5%. Distant or metastatic breast cancer has a 5-year survival rate of 27.4%. However, these are only overall statistics which can be based on people who were diagnosed years ago before today’s advancing treatments.
Being newly-diagnosed can be scary. If you want to confirm you are receiving an appropriate treatment, you can always get a second opinion or look at your approved treatment options and clinical trials on the Outcomes4Me app.
Question: Can you take tart cherry capsules for joint pain? The joint pain is secondary to letrozole.
Answer: Aromatase inhibitors like letrozole work to decrease estrogen in your body (11); estrogen withdrawal can increase inflammation, which can cause joint pain (11).
Research from May 2019 showed that tart cherry can significantly improve AI-induced joint pain in non-metastatic breast cancer patients (12). Tart cherries contain flavonoids and anthocyanins which have an anti-inflammatory effect on your body. Therefore, tart cherry capsules may be able to help reduce joint pain by reducing inflammation in your body (13).
Question: I experienced 3 weeks of Xeloda started June 3, 2019 and it made me deathly ill, is this common for patients? Do you know the percentage of cancer patients that take Xeloda if they get very ill from this medication?
Answer: We are very sorry to hear you are having a bad experience with Xeloda. You can find common side effects for Xeloda on the Outcomes4Me app; these include diarrhea, hand and foot syndrome, nausea and vomiting, abdominal pain, fatigue, and increased levels of bilirubin in your blood (14, 15). Luckily, these side effects can be managed and can improve after stopping Xeloda.
More serious side effects, such as what you are referring to, are rare. About 8% of patients stopped taking Xeloda due to side effects (16).
You can keep track of your symptoms on the Outcomes4Me app so you can report them back to your doctor. In addition, the FDA encourages patients on standard treatments to report serious side effects to them so they can track the safety of the drug. If you wish to do so, you can contact the FDA at 1-800-FDA-1088.
DCIS (Stage 0):
Question: What are the chances of a recurrence 9 years after my DCIS diagnosis? I had stage 0-1 DCIS, grade 3, and was treated with a lumpectomy and radiation.
Answer: Most recurrences of DCIS happen within 5 to 10 years of the initial diagnosis. A recent study showed that at 10 years, the rate of recurrence for patients who had a lumpectomy and radiation was 1.5% (17).