Code Pink Episode 2: Assemble Your Team

*In this series, I will share a very raw personal journey. As you read this blog series, none of the information provided should be considered expert medical advice. What I went through may or may not be the same for the next person. I tried to share common reactions to treatment and how to manage. I am also not paid to advertise certain products. Please follow the direction of your medical doctor. The information in this series should be read with a smile. Please also be aware, I am very honest. I tell it how it is. I don’t sugar coat but I can be sarcastic. For that, I apologize for the occasional profanity. The tips and suggestions are things I’ve learned along the way, helped me, and information I want to share with you.

The day after I was diagnosed I was assigned to a group of nurses called breast center navigators. They helped me plan all my appointments and imaging studies. Within three days of diagnosis I was meeting with the surgeon and oncologist to plan my course of action and within ten days I had a port and started chemo. Everything moves very fast and it’s hard to stop and process everything. Trusting in your team is so important and if you have questions or don’t agree, get a second opinion. Be an advocate for yourself.

Primary Doctor: You will continue to have a primary doctor for non-cancer related appointments, and they will stay in the information loop but they won’t be a key player on your oncology team.

Obstetrics & Gynecology: Like the primary, this doctor will take a back seat when it comes to treating your cancer. For me, I went to the OB/GYN when I first felt my breast lump and my doctor ordered my mammogram and ultrasound. Once I got my results, I didn’t really interact with this doctor again during the course of my treatment. For pre-menopausal women, working with your OB/GYN or fertility doctor may come into play if you need/want to have discussions about having more children/freezing eggs. All women should continue to follow up with their OB/GYN (if you regularly see one) following treatment for annual exams including breast and pelvic exams.

General Surgeon: This is the doctor that preforms the breast tissue removal surgery. Whether you have a lumpectomy or mastectomy, this doctor will be the doctor that removes either the lump or tissue of the breasts. They may also remove lymph nodes if necessary. After the primary surgery, this doctor typically steps back and plastics takes over if reconstruction is something you want/need.

Plastic Surgeon: This doctor will be in charge of all your cosmetic and reconstruction needs. They will work with the general surgeon at the time of surgery to make sure you will have the cosmetic result you’re looking for ie: implants, minimizing scars, areola tattoos, nipple reconstruction, etc.

Medical Oncologist: This doctor specializes in the chemotherapy and hormone therapy side of oncology treatment. They are usually the MVP of the team, and while the work with all the other members of the team, they are the ones deciding the course of treatment and who manage your continued oncology journey.

Radiation Oncologist: The radiation oncologist is a doctor that specializes in using radiation to treat different types of cancer. Depending on the stage of breast cancer and lymph node involvement, radiation may or may not be in your cards. Research is showing that even with minimal lymph node involvement, 1-3 nodes, radiation can be helpful when trying to kill any remaining rogue cells.

Family/Friends Support System: Certain family and friends will make their way onto your team. You’ll find that people you thought would be by your side will either rise to the occasional or they will fade into the woodwork. Friends you thought you had will stop calling because they don’t know what to say. Early on in my diagnosis I found out very quickly who my “people” were. The people I could count on to hold my hair when I puked, carry me upstairs, bring meals, take care of the kids, come to appointments, sit with me at chemo, and help when I needed it.

Other Cancer Warriors: I met some amazing people going through treatment. Family and friends who’ve survived cancer also speak up and offer to help. Immediately you make friends and these will be “Your Pink Sisters”. These are the people who’ve been there, done that, the ones that truly get it!

*Tips For Surviving: Make a cancer command center. I put together a 3 ring binder once test results started coming in. I had the following dividers: The team (all my doctor contact info), imaging results, labs, chemo medication info, chemo visits, surgery info, plastic surgery/reconstruction info, FMLA & STD information for work, etc. I brought that to every visit and updated it after every test. It helps having everything in one place.