God bless you through this journey and know you are in our prayers.
NO QUESTION IS A STUPID QUESTION
ASK TO HAVE ANYTHING REPEATED THAT YOU DO NOT UNDERSTAND
You should have a follow-up appointment with your surgeon about two (2) weeks after surgery. You might want to make this appointment when given your surgery date, that way it is done and you can put it on your calendar.
Once home, if you you have any discomfort from swelling, fluid build up, or are bleeding - CALL YOUR DOCTOR ASAP!
Do not take any unnecessary chances with your health. Better to call than have problems build up.
Within 4-6 weeks after surgery, you will need to have your first fitting for a breast prosthesis and mastectomy bra. As long as all drains are out and most of the tenderness in gone from the chest wall, you can call for an appointment for your fitting. If you still have slight swelling you can be fitted, but you may want to wear the prosthesis for only a few hours at a time until all the swelling is gone. If your swelling has not gone down tremendously by this time - you should call your doctor.
You must have a prescription from your doctor for these items. Call their office and they can fax one to the boutique of your choice.
With the advances in breast prosthesis technology, they are lighter, cooler, and because of the different shapes available, you will be looking and feeling very natural. If you have had reconstruction and are not completely symmetrical or if you feel unbalanced when completed, there are very thin prostheses for that exact reason. Ask to see them and try them on to see if you look more symmetrical and/or are better balanced.
1) Take your post-surgical garment and drain pouches to the hospital with you. If you are having bilateral surgery, take both packs of pouches with you. Wear a shirt that opens in the front and pull on pants to make it easier to dress when going home.
2) You will be wearing these garments during your recovery time. Do not wear a "regular" bra for at least 4-6 weeks post-surgery..
3) The form you are given with your post-surgical garments is NOT your prosthesis. That is a first form to help you through the healing process.
If you know before surgery that you will be having lymph node(s) removed, ask about lymph-edema. You can order a compression sleeve before your surgery so you can have it when you get home from the hospital. Some insurances pay for a portion of the cost with a prescription. Call your insurance company and ask about your benefits for the compression sleeve and a gauntlet for the hand, if needed.
If you find out post-surgery that lymph node(s) were removed, ask your surgeon for a prescription for a compression sleeve before leaving the hospital. Call me and I will come to your home and measure you for one. ** This is now up for debate. **
** Once you know you have had lymph nodes removed, here are a few tips:
1) No needle sticks or blood pressure should be done on that arm EVER AGAIN.
2) DO NOT carry your purse or lift anything heavy with that arm.
3) Wear your sleeve while doing housework, gardening, golfing, etc.
4) Exercise your arm(s) FOR LIFE to keep the fluid moving.
5) Wear your sleeve if you fly, 2 hours before and leave on 2 hours after your flight.
Ask your doctor or nurse about post-surgical exercises. You need to exercise your arm soon after surgery to help prevent scar tissue build up, aid in moving fluid through the lymphatic system, and help to regain movement in your arm. You may not be able to lift your arm(s) over your head for a short time due to the surgery itself and healing time.
1) As soon as you can after being diagnosed, get two notebooks. Take one with you to all of your appointments. Jot down any questions that pop into your head, any comments you do not understand, or to take notes concerning what is being said. Keep the other one beside your phone to make notes from all the calls that will be coming your way.
2) DO NOT make any quick decisions. Remember - the doctors work for you and they can wait for your decisions.
3) If you have not seen a Patient Navigator, ask for one. Every hospital now has them. They will help with coordinating all the different doctors you will need to see. If you feel do not need to see a particular type of doctor, say so.
Remember - YOU ARE IN CHARGE!!
4) Try not to look too much up on the internet. Be sure to look up what you really do not know, but you can get too much information and a lot of it may not be to your benefit.
5) If you have not been told yet, you should go to a mastectomy boutique to receive post-surgical garments which will make the recovery process more comfortable for you. Ask your doctor for a prescription for these items if you do not have one. Most insurances will pay towards, if not all, the cost of at least two of them. While you are at the boutique, check out the breast prosthesis and mastectomy bras. This may help you with your decision concerning reconstruction.
6) You will have have drain tubes in your chest wall when you leave the hospital if you have a mastectomy. They have a collection bulb attached to them for fluid to drain into, so if you are a bit squeamish, ask your surgeon about a home health nurse. They can come check on you and empty the drain bulb(s). The post-surgical garments have pouches which hold these bulbs close to the chest wall.
7) Do not listen to other people's depressing stories. For some reason, those are the stories you will hear the most.
DO NOT LISTEN TO THEM !!
Put your hand up to stop the discussion the minute it starts saying, "I am sorry, but I am only listening to positive outcomes, so if you have one of those, I would appreciate hearing it."
As you go through this journey, you will be inundated with so much information that most of it will likely escape your memory.
I have put together information which I hope will be of help to you. I have listened carefully to my many clients and some of these hints have come from them.
A Guide to Help You Through The Journey
Live Laugh Hope Pray
Victorious Images Help Through The Journey
Nancy P. Lewis, CFm
7191 Richmond Road, Suite E
Williamsburg, VA 23188-7239