Breast Cancer First Lessons Jeanette April 29, 2017 Breast Cancer Learning that I have breast cancer has been an eye-opener. Not only was it a surprise, but it's been a steep learning curve. So in the interest of helping others facing that gut-wrenching diagnosis, here are some of the things I wish I had known from the start. 1. There will be a lot of waiting. No, I'm not talking about the waiting in the doctors' offices, but just waiting for information. Waiting to learn the next steps. Waiting to get test results. The sooner you accept the fact that you can't know everything NOW, the better you will be able to relax and focus on your health. 2. It's okay to cry. Naturally you probably cried when you got the diagnosis. But it's okay to keep crying. You'll be sitting in front of the TV and break out in tears. You'll be hugging your child and tear up. You'll be taking a shower with streams of tears running down your face. It's okay. (Likewise, it's okay NOT to cry. It's all part of YOU and how you are made up.) 3. Photograph your breasts before you start on the journey. I was lucky enough to read this advice in another woman's blog post and I am so glad I did! Once you start on the biopsies, your breasts will be bruised and swollen. You want to document what they looked like in their "natural" state before you started down this road. Some women may mourn their breasts with the photos. Others may want to document them for later reconstruction. Even if you never look at the pictures, you will have them - just in case. (And be sure to take at least one picture holding a quarter next to the nipple so that you can judge the size for later.) 4. You will need a team - and you are the person in charge of putting it together. I assumed I would need a surgeon, so I got a referral to a surgeon one of my doctor's nurses recommended. She's at Texas Oncology and specializes in breast cancer. Perfect! The surgeon is the one who did the biopsies to determine the type(s) of cancer I have. She is also the one who determined that instead of the lumpectomy we had originally thought I might need (followed by radiation), we needed to do a double mastectomy in order to get all of the cancer on both sides. Then she asks me who my oncologist is. What? Who told me I would need an oncologist? Well, you do. And you need to talk to her before the surgeon will decide on next steps. Because in some cases (depending on your diagnosis) you will need either radiation or chemo BEFORE your surgery. Who knew? So I got an oncologist. I really like my oncologist, Dr. Bala. Like my surgeon she is patient, never seems rushed, and explains things very well. She will be the person guiding my recovery after the cancer is removed. And because my biopsies showed I have ER Positive, HER2 negative cancer, I don't need to have chemo before my breast surgery. Great! Then she asks what type of reconstruction I will be having and who my plastic surgeon is. What! I need ANOTHER doctor? Yep, a plastic surgeon. So my oncologist refers me to several plastic surgeons. I chose Dr. Fisher as my plastic surgeon. Like the others on my team, she explains things very thoroughly, answers all of my questions, and has a great plan for reconstruction. So it turns out the plastic surgeon will mark up my breasts before the surgeon starts the procedure. Then once the surgeon has completed removal of the cancerous breast tissue, the plastic surgeon takes over and completes the reconstruction. Two surgeons, one operation. One other person involved only in the surgery is your anesthesiologist. Dr. John was wonderful! I had the anesthesiology records I had used in a prior surgery (2015 appendectomy), so showed her those. I explained that I had come out with no hangover, no nausea, no problems. I also requested Versed, a drug that removes your memory of the event. She was very obliging and thanked me for providing the information. Remember, it's YOUR body and your mind you are protecting. ASK for what you want! Following the surgery, I will have follow-up appointments with the surgeon, the plastic surgeon, and the oncologist - all in the first 2 weeks after surgery. So you need someone to drive you to all of the appointments. Plus, remember that you will be still tired and weak, so they need to drop you off close to the door! 5. Choose your doctors carefully. These people are in charge of your life - now and in the future. Spend some time to research them. When getting a referral I asked for 3-4 names, then I went to their websites, read through their materials, looked at testimonials. Then I went to a third party website like HealthGrades.com and read the reviews from patients. In every case I was able to easily identify the doctor I wanted to contact, based on this information. 6. Write out your questions for each doctor prior to your appointment. If you don't want to take notes, ask to record the conversation. In addition to the questions you've thought of, look at several websites for the list of questions they recommend. I found BreastCancer.org particularly helpful for information and questions. It's also helpful to have someone with you to take notes and ask questions you haven't considered. I was lucky enough that my husband was able to go with me to all of the appointments. But if you need to use a variety of people, form a "cancer team" and keep all of them informed about all of the answers and each of the steps. One of my friends recommended CarePages.com - you can create an update blog that you can either share with only your care team or one you can share with the world. Trust me, many people will want to have regular updates about your health! 7. Ask your doctors' staffs to take care of insurance issues for you. Breast cancer surgery and reconstruction are covered in almost all cases. Let the experts worry about any details. Tell them you want to know what costs to anticipate in advance of your surgery. 8. You need to know what type of cancer you have. Once the surgeon has gotten the biopsies, she will send them to the pathologist. The pathologist will likely tell the surgeon within 24 hours whether or not it is cancer. The type of cancer will take another 5-7 days. But it is important that you know what type of cancer you have. Your surgery and recovery depend on that information. Once you have been told what type of cancer(s) you have (there may be several types in different locations), look it up. I used Dr Love's Breast Cancer Book that thoroughly covered the types of cancer and what they mean. It was very helpful. Your surgeon should also send you a copy of your pathology report. Keep that in your files for future reference. 9. Prior to surgery there will be appointments and lab work. If you are working, you will need to plan to take time off. If you are not working, it makes it a little easier to schedule everything. For example, I had the initial mammograms and ultrasound, appointments with 3 doctors, a day for biopsies (painful! so plan to take the day off), pre-surgery appointments with both the surgeon and plastic surgeon, labwork, an EKG, and nuclear medicine (painful, usually the day before surgery. Take the day off!). And those were just before the surgery! 10. Plan for recovery. (Disclosure: I had a double mastectomy with immediate reconstruction with implants, so I may not provide as much detail as you need for your specific type of surgery. Likewise, I am retired with no young children at home, but a "saint" of a spouse. Your circumstances may dictate a very different recovery plan.) If you are having a lumpectomy the recovery time will be shorter, but be sure to ask your surgeon (and plastic surgeon if you are having immediate reconstruction) what to expect. If you are having a mastectomy you need to plan for at least 4 to 6 weeks of recovery. The first 2 weeks will be bed rest and walking around the house. No chores. No lifting. You'll only leave the house to go to doctor's appointments. This is when you need someone right there to help you. Tap on your spouse, sister, daughter, or friend to be there for you. They will be glad to do it! The next 2 weeks will still be light, but you may be out more, with someone else driving, particularly if you are still on pain medication. For the first 2 weeks or so you will have drains - tubes that drain the extra fluid your body is producing. These tubes have to be emptied and measured several times per day, so you will likely need help with these to start. Depending on your doctor's instructions, you may not be able to bathe until the drains are removed. That means you need the ability to take sponge baths and wash your hair. If only your breasts were involved in the surgery, you will be able to rinse off the lower part of your body with a hand-held shower. You can use a bathing cap to wash your hair, but you'll need help since you won't be able to raise your arms above your head. You will want large tops with either button-up fronts or arm holes large enough to get your arms through with limited mobility. Choose sizes that are 2-3 sizes larger. A trip to a used clothing store or discount store can be good to find shirts you'll likely never wear again. You will also want a drain holder or two, rather than having to hold the drains while you navigate the bathroom or kitchen or continue to use the elastic belt they sent you home with (it starts itching about day 4!) If you have a Breast Cancer Resource Center, they may have some you can borrow for your recovery period. Cook ahead. You will likely not be very hungry, so package your favorite dishes into small portions. Then you or someone else can thaw and warm your favorites as you are hungry. Don't try to keep to a meal schedule. Just eat when you feel hunger. Walk as much as possible. I put my Fitbit back on my first day at home and have tried to increase my step count every few hours. Getting your body moving keeps down the swelling and encourages the healing process. But don't walk to the point of exhaustion! Just walk for 10 minutes or 200 steps or some small goal. Repeat every few hours (between naps!) 11. Guard your attitude. I was lucky in that I have a strong background in positive thinking literature. I have used EFT regularly for many years. And I felt good about myself in general. But if all of those things did not automatically fall into place for you, work on your attitude! It's in your best interest to create a positive atmosphere with which your body can heal. One book I have used for years is You Can't Afford the Luxury of a Negative Thought. I recommended it to my mother when she had breast cancer and thyroid cancer. A book recently recommended to me by a dear friend is Getting Well Again. I'm looking forward to reading it when my eyes can focus again (pain killers often affect my ability to focus!) Another friend published a short report based on her breast cancer. You'll find it at Cancer-360.com A third thing that has really helped me is not being angry about the cancer. I don't feel like I was singled out to have cancer. I'm not a victim. Scientific research has recently shown that cancer occurs when some of our cells go hairwire for an unknown reason. And while there are things we can do to support healthy cells, we cannot prevent cancer. So if you are taking cancer personally - don't! It's not a personal attack. 12. Share your experience with others. While I didn't tell anyone about my diagnosis in the first few weeks, I feel free to talk about it now. Your friends (yes, even your Facebook friends!) are on your side. They want you to be healthy. They want to know if there is anything they can do. They want to hear about your progress. When you share your experience and lessons with others, you will touch the lives of others who have similar challenges. Write what you know and what you've learned. Pass on your great attitude and healing thoughts! And naturally, that's why I wrote this. So if you know of anyone who has recently faced cancer, particularly breast cancer, please pass this on so that they can benefit from it as well. Meanwhile, thank your body for being as healthy as it is and encourage it to fight any unusual cells it has. 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