Traveling Domestically With Advanced Breast Cancer
Over the last four and a half years living with metastatic breast cancer, I’ve traveled quite a bit both domestically and foreign. Here are some of my favorite tips and tricks I’ve learned to help cancer patients who are traveling domestically in the United States.
(While most of these were used Pre- Covid-19, the majority are still applicable. If you have questions, please contact your airline or medical team for more information)
Tips for traveling domestically with metastatic breast cancer
1. Always notify your healthcare team if you will be traveling
This is especially true if you are in active treatment and will be out of range (more than a comfortable driving distance) from your cancer center. It is NEVER a good idea to hide that you are traveling from your team. Even if they prefer you don’t travel, the decision is ultimately yours, but they still need to have a plan in place in case of emergency so they aren’t caught at the last minute not knowing how to help you if you’re in a bad situation.
I highly recommend asking your doctor for a letter stating that you are a breast cancer patient, that you are traveling with medications, notating if you have a port or any other implanted devices, and that you may require assistance. You may not need the letter, but I can tell you - having this letter has made some bad experiences with TSA much less difficult when a question arises. I also usually attach a copy of my most recent medication list and my most recent appointment summary and scan report in case of an emergency. The one time I did end up in the emergency room, I was able to just hand over my packet to the nurse when I checked in, making the whole process much easier.
2. Don’t be afraid to ask for help if you need it
Wheelchairs are readily available to be used at all airports when you are flying. This is a FREE service. While you can tip if you choose to do so - you are not required to tip, and the person transferring you may not ask for payment for their service. If you encounter someone charging you or pressuring you to pay for disability assistance, let your gate agent know. Exploiting a person because of a disability is NEVER okay. These employees are also not paid as tipped employees so do not feel you have to tip, however, I will usually tip a little bit, especially if they help with a bag down in baggage claim.
Keep in mind, the chair is there to make your life easier. If this service would be beneficial for you to use, ask at check-in (or some airlines will let you book when you book your ticket). Also, If you are back and forth on whether or not to use it - remember the energy you save at the airport could be the energy you can spend enjoying your trip once you get to your destination. No one is giving trophies for not using assistance; If you need it, use it.
3. Ask about disability pre-board or seating preferences on flights
If you requested a wheelchair, the disability preboard option will typically be automatic; but you don’t have to use a chair to use this service. This is something I almost always use. This option will allow you to board the plane before other passengers- giving you more time to stow your bag, find your seat, or on some airlines - choose a seat that works best for you.
I try to make sure I don’t have a stranger on the side with my lymphedema after being next to someone who accidentally knocked into my arm (ouch). Also, you can ask at check-in if it is possible to have seat accommodations if you need an aisle because of needing to get up and down more frequently, or if like me, you need to protect an arm. You can also ask if you have a light passenger flight to see if you are able to have an empty seat between you and another passenger due to being immunocompromised from your cancer.
And above all else - wear a mask on the plane.
4. Know what to expect on your flight
Do you have brain mets? You may experience headaches from the pressure on the plane. Have lymphedema? Wear your sleeve or other compression garments, even if you’re not swollen to prevent swelling. Also - get up and move to prevent blood clots in your legs (also called DVT). Anxiety? Keep your meds where you can reach them or discuss with your doctor if premedication is a good option for you. Problems with nausea? Sit on the aisle and have an emesis bag ready in your seat back pocket in case of an emergency. Also keep in mind, most flights have ginger ale as an option.
Also - ALWAYS bring your original bottles if flying with controlled meds like opiates and keep them with your other meds in your bag that will stay in the cabin with you, this may not always be a carry on - it may be your personal item. Remember if you gate check your carry-on - take your meds out of it before you gate check and keep them on you.
5. Know your rights if you’re flying domestically
TSA Notification Cards are a helpful way to discreetly communicate your condition to TSA. TSA PreCheck is one of the best decisions I’ve made to help get through TSA - but even if you don’t have precheck, know what you can take. Your PRESCRIPTION liquid medications (like prescription mouthwashes for mouth sores) are not bound by the 3oz rule, HOWEVER - have your original bottle with the prescription listed on the bottle.
If you have a port and are asked to submit to a pat-down - let the agent know that patting your port can cause pain and devise malfunction. If they are persistent to pat down your port - ask for a supervisor. Having your port damaged and potentially having to have it replaced should never be the consequence of a pat-down, but with improper technique - it could very much be the result.
So you know - you CAN fly with a breast prosthesis as it is considered medically necessary. Here is what @AskTSA answered when I asked them this question “Before the security screening begins, it is important for passengers to inform the Officer if they have breast prostheses. Prostheses and mastectomy bras are considered medically necessary and may be worn during screening. You won't be asked to reveal or remove your breast prosthesis. For your privacy, if these items require additional screening, you may request that it be conducted in a private screening area.”
If you have an issue or feel you are experiencing discrimination because of your disability - ask for a supervisor or file a complaint. Silence has never solved injustice.
Have other questions about what you can take through TSA? Tweet @AskTSA with your question.
6. Have an emergency plan
Regardless of your plan, if you have an emergency call 911 or go to the nearest emergency room.
If you are a USA citizen traveling domestically - double-check what your insurance plan covers for out of network medical needs or if you’re traveling out of state - check if your policy covers out of state expenses (Medicaid may not cover needs outside of the home state).
Talk to your medical oncology team about what would warrant coming home early vs being treated where you are. If your team knows where you are going, they may be able to offer guidance as to where to go in case you need fluids or something else minor to keep you enjoying your vacation. They can also tell you if vacation is over and you need to come home to be seen.
I hope these help you as you travel with breast cancer! Enjoy your travel, wherever you may go!
Editor’s Note: We are extremely saddened to share that on Friday, November 1, 2021, Tori Geib passed away. Tori was a dedicated advocate who worked tirelessly to raise awareness and funding for metastatic breast cancer. She will be deeply missed by us and by the community.
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