May 2016 Ask the Expert: Newly Diagnosed: What Do I Do Now?
Learning you have breast cancer can be overwhelming. You’re hearing new words, meeting new people and making treatment decisions, all while trying to live your life in as normal a way as possible.
Nobody understands this better than people who have experienced it themselves. So in May, Living Beyond Breast Cancer presented a panel of women who have been diagnosed with different subtypes and stages of breast cancer, including metastatic breast cancer. They answered your questions about being newly diagnosed with breast cancer, from talking to others about your diagnosis and putting together a healthcare team you trust, to working through worries and fears and continuing to live well.
Colleen Bokor, of Downers Grove, Illinois, was diagnosed with stage II triple-negative breast cancer in 2012, when she was 27. She is a full-time nursing student pursing her master's of science in nursing degree. She volunteers with LBBC’s Young Advocate Program.
Kim Moreland, of Tigard, Oregon, was diagnosed with hormone receptor-positive ductal carcinoma in situ (DCIS) in 2011, at age 49. She volunteers with LBBC’s Breast Cancer Helpline and is vice president of the Oregon and SW Washington chapter of Sisters Network, an organization that highlighs the devastating impact breast cancer has in the African-American community.
Remember: We cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
Julia: I told my spouse right away. With my kids (ages 8 and 10 at the time), once I had a day or two to digest and come up with plans for the next steps, I told them quietly and honestly. It was just me and them. We cuddled, we talked and I used language they could understand. I did not make promises I didn’t know I could keep. I ordered and read How to Help Children Through a Parent's Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist by Kathleen McCue.
I told my closest local friend, and let her “spread the word” to people I wanted to know. She set up meals for me through mealtrain.com, which was amazing. I told my closest non-local friends one by one over the next weeks. I set up a private Facebook page to update as needed. That was the best for me, because I could just post the information I wanted people to know, and not have to answer a million questions.
Colleen: Unfortunately, I received the call from my doctor while at work. I spoke with my boss a few days later, and while that was a difficult conversation, he was able to inform the human resources department and my co-workers. For me, it was so much easier to return to work a week or so later with everyone already knowing about my cancer diagnosis. While it’s not for everyone, I found that being open about my cancer at work was a positive decision, because I received so much love and support, which raised my spirits during challenging times.
Telling my friends was an extremely difficult experience for me. It was so shocking and devastating in the beginning and always an emotionally draining conversation. I often felt like I was consoling people after I shared, and that took its toll on me. I always felt more comfortable once people already knew. That being said, the support of friends, family, and co-workers was such a vital part of my healing and it truly kept me going on my darkest days. So while it can be difficult to share, I think the benefits outweigh the drawbacks.
Kim: I told my family first and later shared with my church family and with members of some small groups I participated in. I was very open with my diagnosis. I had quit my job a few month prior to receiving the news, so I did not have to deal with sharing the news at work and taking time off of work. However, when i shared the news with my former co-workers they were very supportive and encouraging.
Katherine: One of my brothers is a doctor and had been helping me schedule appointments, understand test results, and so on. I asked him to share the news with my immediate family. First I learned I had breast cancer, then, some weeks later, following diagnostic testing, I learned I have stage IV disease. This was shocking news – I could barely get my head around this, let alone explain it to someone else. I started a Caring Bridge blog, but if I was diagnosed today, I would start a Facebook page – that would probably be the easiest way for me to manage group communications.
Most people are familiar with early-stage disease. It was really hard to explain that wasn't what I have and that my treatment would be different. Even almost 8 years later, I am pretty sure some people just don't get it. That is evident when they ask “When will you finish treatment?” It's an ongoing challenge!
Julia: I would NOT read all the random information on the web. I’d stick with known, reliable sites like LBBC.ORG and Breastcancer.org and I’d stay away from all personal blogs. I am an information gatherer by personality and trade, so I like reading everything. But right after a life-changing, stressful moment like diagnosis, my ability to filter good/bad/useful/not useful information was impaired.
Talking to medical professionals, taking notes, getting second medical opinions, asking follow-up questions – which sites like LBBC.ORG and Breastcancer.org helped me formulate – that gave me plenty of information for my brain to take on!
Colleen: I believe that the time period immediately following my diagnosis was unsettling and chaotic because I did not have a plan of action. During this time, I was seeking a care team that was a good fit for me, and I felt stretched in several different directions. The best advice that I received was to take the needed time to find the right care team. Instinctively, we have cancer in our bodies and want it out immediately. But while it is important to be prompt and swift with treatment/surgery decisions, often it’s more critical to find the team of doctors, oncologists, breast surgeons, nurses, radiologists, etc. that all work together to leave you feeling comfortable and confident with these major body-altering decisions.
I began to educate myself on the specifics of my type of breast cancer and the best things I could do for survival. Knowledge is power and this information can help you to become the best advocate for yourself. When my gut was telling me that a surgeon’s direction with my care was not appropriate for the type of breast cancer that I had, I ended up getting a second opinion and selecting that hospital for my treatment and surgery. I did not start chemotherapy until 60 days after my diagnosis. For me, once I took the time to select the team that I was confident would choose the best course of treatment, coupled with caring for me on a personal level, then everything else fell into place.
Something that I would recommend doing earlier is to seek out connections with other women facing similar diagnoses. I did this later down the road, but I now realize it may have been beneficial to reach out earlier. LBBC is a wonderful resource to help with this.
Kim: Not really, because you don't know what you don't know. I had a great medical team and I trust that the decisions made at the time of diagnosis were the best within the context of my knowledge base.
Katherine: I would have sought a second opinion at, and possibly pursued care at a National Cancer Institute (NCI)-designated cancer center. Receiving the NCI designation places these cancer centers among the top 4 percent of the 1,500 cancer centers in the US. Because I have stage IV breast cancer and will always be in treatment, I want to know my team is current with the latest developments and is willing to think outside of the box. NCI’s patient guidelines helped me understand my disease and its treatment – had I known this material existed, I would have sought it out and read it in the beginning. I also would request LBBC's brochures – I really struggled to find any information on metastatic breast cancer, so I wish I had known about LBBC and other patient resources.
Julia: In most ways, yes. I am about one-and-a-half years post-diagnosis. I am still receiving oncology care. I still have some physical therapy issues. But I feel generally good, strong and capable. I have less patience with some things and people, and I have more patience with some things and people, than I used to. I am different, so my life isn’t exactly the same, but it is pretty close!
Colleen: Cancer rocked my entire world so profoundly that things will never be the “normal” that I once knew. Specifically, I’ll never again be ignorant to my own mortality. While this can be perceived as a negative statement, I truly have reshaped my entire life to turn it into a positive. I’ll never again think that I have all the time in the world to accomplish a goal or take that special trip. And in that sense, this “new normal” has left me grateful for the time and second chances that I have received. This “new normal” comes with its own challenges like fear of recurrence, body image issues, fertility issues, etc. And while these challenges are not to be overlooked, I feel like the majority of my time is spent focusing on the present day and new adventures.
Kim: As much I hate to use this cliche term, it is definitely a "new" normal. In many ways, breast cancer has been one of the best things that happened to me. I let go of some previous fears that had strongholds in my life, and I enjoy life more. I have a new job that is very challenging, and I've met some wonderful breast cancer survivors, and I really cherish their friendship and support.
Katherine: Surprisingly, yes. I was fortunate to have some years where my disease was fairly quiet. I continued to work full-time, continued to travel and do things I had done prior to cancer. Although it remains difficult to deal with the ongoing uncertainties of this disease, especially awaiting test results, to a degree, you manage to find a routine. Another patient put it this way: It’s like a radio playing in another room – sometimes the volume is very low and I can barely hear it in the background. At other times, the volume is turned all the way up and I can’t ignore it.
Colleen: I’m not going to sugarcoat it – the night before my first treatment was terrifying. I remember not being able to sleep and feeling anxious. For me, it was fear of the unknown, so once I got that first one under my belt, I felt much more comfortable and relaxed about the treatment. My chemo side effects compounded, so I began to feel more sick and weak during the latter half of my treatment. I found it helpful to be mindful of how many treatments remained and cross off dates from the calendar after each one. I had 20 weeks, which was daunting at first, but I was surprised at how quickly the time passed. I was fortunate to have my parents or friends accompany me to every treatment. This was extremely helpful in making it more tolerable. I don’t get to see some friends that came with me very often and so chemo became a great time to catch up, have some laughs, watch movies, and read magazines, which all helped to lighten the mood. I also took advantage of services like painting therapy offered during treatment. Again, these activities helped get my mind off of things and actually have some fun. I also went to a nutrition class at my local Wellness House on “Sidelining Side Effects.” There are different foods and spices that can help offset side effects like nausea, dry/sore mouth, metallic taste, diarrhea, neuropathy and low appetite. Getting supplementary tips on nutrition complemented my treatments well.
Katherine: I hear you! I have been living with stage IV breast cancer since 2009. I have been fortunate to avoid IV chemo to this point, but it is certainly looming closer as I am on my fifth line of treatment, and I do not look forward to it. I take great inspiration from my fellow patients. I know if they can do it, I can, too. LBBC’s Breast Cancer Helpline [toll-free at (888) 753-LBBC (5222) or via online chat] can put you in touch with peers who have been there. I would take advantage of this and get some insights from others who have been on the same treatment.
Katherine: For metastatic patients, radiation is sometimes used for pain relief. I haven't had that kind of radiation. I did have radiation following my mastectomy. Although it was a quick treatment, going to the hospital every day for about a month was tiring. To make it more interesting, I bought 30 scratch-off lottery tickets and every day I would see if I won the big bucks. (Sadly, I didn't, but it was a good distraction.) I did have fatigue during and immediately after my treatment, but eventually my energy rebounded.
Julia: I had a unilateral mastectomy and 10 lymph nodes removed. I had two drains. I felt pretty good energy-wise and pain-wise within a few days, but was pretty tired by the end of the day, and couldn’t lift much with my right arm. I couldn’t drive until the drains were removed and that was hard! In many ways, I returned to normal life within a few days – caring for my children, myself and the household. But there were things I couldn’t do – drive, lift, vacuum – for several weeks. I fatigued – physically and emotionally – easily, so I didn’t resume my evening-hours job for about 4 weeks.
Colleen: The post-surgery recovery for me was pretty intense and lengthy. I had a double mastectomy with reconstruction, using a DIEP flap. Because of the nature of my reconstruction, I needed to be monitored in ICU for the first 3-5 days and then moved to a regular floor for another 2 nights due to some complications. The initial recovery in the ICU was the most painful and by the time I left the hospital I was badly bruised and swollen, but feeling much better. I came home with drains and was doing minimal activity for another week or so. About 4-6 weeks after surgery I recall beginning to regain more energy and the ability to do a little more each day. My breast bruising and swelling stopped after a few weeks of being home. My abdomen was sore for quite a bit longer, but I was still able to resume my normal activities despite this. Now 3 years post-reconstruction surgery, I can honestly say that it was worth all the pain and recovery time. I am very pleased with the results.
Kim: After the lumpectomy, my family made sure that I followed the doctor's order and rested. I was not tired or in pain after the surgery. In fact, I was driving and running errands soon after.
The mastectomy was a different story. After surgery, I was really tired and physically and emotionally exhausted. There are so many follow-up appointments and I was so happy when they removed those drains. After it was all said and done, within a 1-year period I had a lumpectomy, a mastectomy, and reconstruction surgery. I had a series of follow-up appointments, including for filling the expanders that were part of my reconstruction surgery. My heart goes out to women who are working through this process and do not have the family and financial support to get back and forth to all the appointments.
Katherine: I recovered quickly. I took it easy for a week, but overall I felt fine. I had a unilateral mastectomy. (A mastectomy isn't standard of care for someone with stage IV disease, but in some cases there is thought to be some benefit.) I did not have lymph nodes removed (because we knew my cancer had already spread to my bones) and reconstruction wasn't recommended, so my procedure was more streamlined than many. I had one drain for about 2.5 weeks. I had some anxiety about emptying the drain, but it wasn't as nasty as I feared. I am a small-breasted woman – someone with larger breasts might have multiple drains. I was given a surgical camisole with special loops to hold the drains, but I found I didn't need it.
Julia: It was hard – and still is some days. (I am still receiving monthly injections and my kids react to the reminder of my illness sometimes.) I was very honest with them. I did not make promises I couldn’t keep. I enlisted their help in small ways, which helped them feel useful. I shared medical information as often as they wanted (in easy words). At different times, they were very needy, very caring, very angry, and very tearful. I tried to accept where they were with it all. I kept giving words to their feelings when needed, and I gave them space to talk, hug, be alone, be with me, etc., as needed.
Kim: At the time of diagnosis my children were 20, 19, 17 and 13. I assured them that this was a very early-stage diagnosis and that this was not a death sentence. I tried very hard to participate in their events and make sure the ones who were in college focused on their studies. I did not want their lives to be changed because of breast cancer. Their friends, teachers and coaches were very supportive. My youngest daughter even wrote an essay about breast cancer for one of her class assignments.
Katherine: I do not have children, but for those with metastatic disease, I'd like to share Dr. Justin Yopp's talk. Also, patients of all stages may want to check out Camp Kesem. This free sleep-away camp is conducted at college campuses across the United States for the children of those who have or had cancer. Many of my stage IV mom friends report their kids have gone and just love it. Just as we patients gain so much from meeting other patients who understand our experiences, the kids do too!
Colleen: I was not aware of any breast cancer in my family history. But since I was diagnosed so young, I got a genetic test done and discovered that I was BRCA2-positive. The disease did not present itself in my family, likely because I inherited this mutated gene from my father’s side of the family, which did not have many women. Genetic testing was easy and covered by my insurance at the time. The results aided me in my decision making on breast surgery and increased my awareness to screen for ovarian cancer.
Kim: After my diagnosis I found out that my first cousin on both sides of the family had breast cancer. I have considered genetic testing because I have three daughters. This is on my to-do list.
Katherine: I had genetic testing just prior to my stage IV diagnosis. For someone who already has metastatic disease, genetic testing isn't likely to change the course of their treatment, but it might have a big impact on that person's family members. If a stage IV patient is found to be a carrier of one or more BRCA mutations, family members now must ponder their own risk and determine if preventive surgery is warranted. Your doctor can refer you to a genetic counselor who can specifically address your risk and issues to consider prior to testing.
It's important to know that we ALL have BRCA genes. Genetic testing is done to see if a person is a carrier of two specific mutations. Being a carrier doesn't necessarily mean you will get cancer. Conversely, not being a carrier doesn't mean you can't get breast cancer. It's also important to remember that only about 10 percent of cancer (any cancer, not just breast) is hereditary. Most cancer just happens. What would a positive result mean to you and your family? Testing is a personal decision – again, it's a good idea to meet with a genetic counselor.
As my experience shows, genetic testing sometimes doesn't offer clear answers. My mom died from inflammatory metastatic breast cancer in 1983 at age 53. Having breast cancer prior to age 40 can sometimes be a hallmark of hereditary breast cancer – I was diagnosed at age 43. My mom's breast cancer as well as our Ashkenazi Jewish heritage places our family at higher risk for hereditary breast, ovarian and prostate cancer. ("Ashkenazi" wasn't a word I knew prior to having breast cancer. It refers to Jewish people who came from Eastern Europe – in our family's case, Germany. About 90 percent of the U.S. Jewish population has Ashkenazi roots, distinct from those of Spanish and Middle Eastern descent.) For those reasons, when my cancer was first found, my doctor ordered genetic testing. I am not a carrier of the currently known BRCA1 or BRCA2 mutations. My cancer isn't considered hereditary. And yet, here I am with breast cancer! It may be that I have a mutation that hasn't yet been discovered.
Colleen: I was diagnosed at 27 and was completely blindsided. I had a close family friend who was diagnosed in her early 30s, so I was aware that it could happen to younger women, but I still never thought that it would happen to me. I recall having a wide range of emotions from initial shock and disbelief to fear and sadness. All the while, I was trying to keep it together and be strong for family and friends who were also devastated for me.
As far as advice, I’d say expect highs and lows and try your best to not to get overwhelmed. Something that helped me then (and still does now) with the stress of cancer is to not look too far ahead because that tends to get overwhelming. Instead, focus on taking it one day at a time and set mini goals for that day. This can be making that appointment, taking time for you, deep breathing, exercise, etc. Tap into resources like LBBC or go to those special people in your life for support. Try to be open to accepting the help from others. This helped me cope a lot better, especially in the beginning.