My friend, Ann Silberman, at Breast Cancer? But Doctor, I Hate Pink, recently asked on her Facebook page what the first piece of advice you would give to a newly diagnosed early stage breast cancer patient. It inspired me to put all my various bits of information into one list and to throw it out there. It's not a perfect list, but it's a decent starting point.
1. It’s okay to be afraid.
2. The diagnostics process sucks.
3. Waiting sucks even worse.
4. Please see: http://www.nosurrenderbreastcancersupportforum.com/post/mamm-magazineunderstanding-your-pathology-report-2604522 to better understand your pathology report. This is one of the best explanations I have ever seen and it breaks everything down in easy-to-understand terminology.
5. Don’t be afraid to ask questions. Here are two lists to get you started:
http://www.today.com/health/diagnosed-breast-cancer-8-things-ask-doctor-2D80555416 (Basic questions to get you started.)
http://www.cancer.net/cancer-types/breast-cancer/questions-ask-doctor (A pretty extensive list of questions covering a lot of territory.)
6. Carry a notebook with you to your appointments and write down everything. Don’t try to remember anything. Keep your notebook in a binder with pockets to put handouts and printouts that your doctor may give you.
7. If you feel like you can’t write down and record information, take a trusted person with you to be your scribe.
8. Do not feel a need to tell everyone your circumstances until you are ready to tell people. When you do tell people, don’t listen to horror stories. When someone talks about “so and so died of breast cancer!” look them in the eye and ask them why they felt it was necessary to tell you this.
9. Do not blame yourself. This is not your fault.
10. Take one day at a time. Some days, take one hour at a time.
11. If you feel completely overwhelmed, ask your doctor if your clinic has a cancer mentor/buddy program. Let your medical team know you are overwhelmed.
12. Do not embrace everything you read on the internet regarding nutrition and health care. Most of them will make you feel that you deserve your cancer due to poor choices on your part. This is not true.
13. Be informed to the extent you are comfortable, but trust your medical team. If you have any reason not to trust them, then you have every right to change your team.
14. Be willing to listen to your doctor and not have ready-made decisions without knowing the facts. For example, many women insist on a mastectomy or a double mastectomy when they are excellent candidates for breast conserving surgery (lumpectomy).
15. Don’t be afraid to ask for a second opinion if you desire one. Many times, that merely entails having the biopsy tissue samples being sent to a different lab.
16. As time goes on, you’ll get accustomed to your new schedule and each appointment will get easier. You’ll become more and more “fluent” in breast cancer language.
17. Blogs, online support groups, physical support groups, individual counseling, family and friends are all excellent tools in dealing with your diagnosis and treatment. However, if you feel that one group isn’t a right fit for you, then feel free to move on.
18. Nurses are your friends. They are the ones who are most familiar with side effects, etc. Be nice to them, even if you do feel crappy.
19. Don’t take vitamins or supplements without checking with your oncologist. Some can negatively interact with various chemotherapy treatments.
20. Just because something is natural doesn’t mean it’s good for you. For example, a friend of mine was told that kale smoothies were good for him and his metastatic prostate cancer. He drank two of them a day … couldn’t hurt, right? Wrong. Kale is loaded with potassium and the overload interfered with his kidney function and he ended up with nephrostomy tubes.
21. Personal note from my experience … my oncologist is always late. I plan on her being late. Yes, my time is also valuable, but I will never forget my first appointment with her. I was a transfer patient from overseas. While I had sent everything possible to her ahead of time, there was still much to go over. My appointment started at 4:00 p.m. and she stayed with me and my husband until 7:00 p.m. A three-hour visit. When she’s late with me now, I remember that … that she’s giving each patient the time and attention needed for their situation.
22. Don’t succumb to the mandate of “be positive, be cheerful, be happy, be strong, be whatever.” The only thing you have to be is yourself. Have safe people around who allow you to be you and who allow you to express whatever you want to express.
23. Be willing to admit you were wrong as you learn more about your own situation. I clearly remember jumping on the nutrition and vitamin bandwagon at the beginning of my diagnosis … thinking I could control my outcome. It’s okay to change your mind.
24. If you are fond of pink, feel free to wear pink. However, don’t feel pressured to embrace the pink ribbon movement just because it’s a symbol for breast cancer. You will encounter women who love the ribbon and you will find women who hate the ribbon. Find the place you want to be. It’s okay to change your mind on this one, too.
25. Ask for help when needed. There will be many who will say, “Let me know if you need anything.” Quite frankly, I never knew what to do with that statement, but I learned to ask for help when I was too tired or whatever. There is no need to be a martyr.
Would you add anything to this list? Another list will be coming for the newly diagnosed metastatic breast cancer patient.