When you or someone you love is having to undergo a mastectomy, they are headed into unknown territory. And, terrifying unknown territory at that.
This is not a topic that is fun to think about. However, if you find you need to go down this road, for your prevention or in defense of your health, there are ways to make your mastectomy recovery easier on you or your loved one.
This article is my attempt to provide what worked for me before, during and after my preventative double mastectomy and mastectomy recovery.
Before you start – Have the Right Mindset
First and foremost, you can do this! I am the biggest baby in terms of medical stuff (or I used to be) and I did it. So, you can too. Focus on positive websites that also spread this message and unless you feel the need, avoid the chat rooms where you get to hear about situations nothing like your own and all the things that went wrong for them.
Their experience doesn’t mean your experience. Find people who will encourage and support you to realize this is a phase/milestone in your life – not your whole life. This is a chapter and thankfully it will end..
enlist help – you don’t have to do it alone
You are going to need help with the most basic of tasks in the beginning. A helpful spouse/partner/hired hand is going to have to help you with the drains for probably a week to 10 days while you have them. Then, you will want and need help with preparing food, laundry, getting dressed and driving you around for a while.
What Not to Do before having a mastectomy
One of the worst things you can do for yourself is to spend too much time self-diagnosing or worrying about what they say on the internet. If it isn’t helpful to you, put it out of your brain. You don’t have the time or the energy for things beyond taking care of yourself.
Thankfully, you will have a lot of people on your team – your doctor, breast surgeon, plastic surgeon and nurses, as well as your family and friends. If you can, place your trust in them and their current wisdom (not the wisdom of someone on the internet who doesn’t know your exact situation).
This is a very confusing time and one where you want to gather as much information as necessary and I understand that. I found this site “Prairie Wife in Heels” to be very helpful and descriptive of what to expect in general. You don’t need a ton of sources to confuse you and she is very open and honest while also being encouraging. The best of all worlds in my opinion!
This is going to be a multi-step endeavor, possibly covering months of your life. The mastectomy will likely comprise several surgeries. Just like in the Girl Scouts, this is an area of your life you will do well to be prepared. Some of the items you are probably going to need to make it easier on you or your loved one:
Excellent Self-Care is So Important during mastectomy recovery
Please realize that you will never need self-care as much as you will now. For one, you need to focus all of your efforts on healing.
You also need to make sure that you:
- Just Breathe
- Do massage exercises (when released to do so)
- Eat healthy food
- Give yourself the time and space to heal
Someday, this will all be a memory but in the meantime, treat yourself like the perfect person you are. Give yourself lots of permission to say no to anything you don’t feel like doing right now.
And, make sure you take time to not jump right back into your old schedule of doing everything. If you do, this will just delay your healing Above all, listen to your body and your doctor. They will tell you when you are ready to do things.
be prepared – Have lots of Entertainment lined up
You are going to want as many distractions as you can muster. Think engrossing books, movies, TV shows, etc. Also, good are coloring books, sticker books, crafts, podcasts, etc.
Just remember if you are in the first week and taking any kind of pain medication odds are you won’t remember a whole lot of this time (which is okay). Count naps as entertainment and watch the inside of your eyelids too.
If you want some recommendations for good books to have ready or TV Shows and Movies, please check my set of Escape Pods out.
Mastectomy Recovery Tips And Must Haves – lining up The Right Supplies Before You Go Through It
- AnaOno – Robe – this robe is ideal because it is really comfortable, soft and also has drain pockets too
- Bras – no wire and open in the front
- Tank tops – with pouches for drains
- Bandages – hold down the drain tubes so they don’t pull on your skin and waterproof so you can take a shower
- Large T-Shirt – Softest material you can find that also breathes to sleep in
- Sleep Ramp wedge pillow because you can’t sleep on your side (and sleeping in a recliner gets old). Think about having lots of pillows in general available to make you more comfortable.
- Shoe strings – for tying up the tubes and drains when you shower.
- Fanny pack – for holding the drains when you get sick of the tank tops
- Cocoa Butter or Nivea Lotion with Almond Oil
- Extra Strength Tylenol and Advil
- Large Water container
Mastectomy – A Rough Timeline of what to expect
This is my experience and I am not a doctor. Please ask your doctor or nurse if you have questions. This is purely my experience as a patient.
- Decision to go forward your breast surgeon
- Breast surgeon will suggest you meet with the plastic surgeon to discuss your options (Flat, Implants – Saline or Silicone, and Moving Parts of your Fat – Flap)
- You decide which way you want to go
- Scheduled – (In my case double mastectomy, nipple and skin sparing, with tissue expanders placed) – this is the major one you will need to block out time afterwards for recovery of at least a week to two weeks (more if your job is physical)
- Prior to Surgery – Gather your supplies and do as much as you can ahead of time – house clean, laundry done, meals ready in the freezer, etc. You will probably have to get blood tests prior to the surgery to make sure everything is okay to proceed.
- Night before – have your overnight bag packed with loose clothes to wear home – sweat pants, sweatshirt that zips up the front, and slip on shoes.
- Surgery – You will be knocked out – so this is the easiest part for you! My surgery lasted around 5 hours total.
- After surgery, they will put you in a surgical bra that zips or has Velcro up the front. In my case, I also had four drains and they charged me for a tank top that had drain pockets in it (four). In addition, I had a pain block in my back that had wires and a separate bulb thing that gradually was used over time – it was wonderful and took away almost all of the pain for the first 24 to 48 hours. They will send you home with a prescription for pain medicines and antibiotics probably too. (heavy duty ones) I spent the night in the hospital and was released just prior to having been there around 24 hours from the surgery to go home. Also, they had already filled up the first round of injections to my tissue expanders with saline (so I never woke up flat).
After First Surgery – mastectomy Recovery Time
- Home – You will want someone to help you with draining the fluid off your drains. It doesn’t hurt, but it is not something you can do yourself. You also need someone to cook for you and give your medicines on time. Make sure you take some jello or something with the medicines so you don’t feel nauseous.
- Five days or so from surgery – You will have a follow-up with your plastic surgeon to see how things are going and probably will have another fill assuming things look well. You may be able to have two of the four drains taken out based on the volume of liquid draining. (I was able to – heaven). I was also able to shower early on as long as I put the bandages over my drain tubes. My stitches were internal and had a glue over them. I received the pathology report and there was thankfully no actual cancer, just the same pre-cancerous lesions in both breasts – so a great decision on my part to have them both removed.
- Ten days out – 2nd follow-up meeting with your plastic surgeon and another fill. Had the other 2 drains taken out. (Double heaven)
- More appointments to continue the fills with your plastic surgeon – The tissue expanders are a pain in the butt, not going to lie. They don’t feel normal and they get hard as time goes on too. Just remember, they are not the end result. Eventually, when you feel you are at the right volume and your body is ready for another surgery – it is exchange time.
Second Surgery – Exchange and Follow-ups
This one is so much easier! It is a total outpatient, quick surgery. In my case, the whole thing was a few hours.
And, you leave with your much more comfortable implants (in my case). They used the same incision lines as before, so I just had to be careful of that area and the swelling, etc. But, it really wasn’t bad at all. Within a few days, I felt much better. Not like the weeks of recovery after the first one.
Continual Follow-up Appointments with your Plastic Surgeon – Checking to make sure everything is healing as it should, etc. You can decide if you want to have an additional surgery to do fat grafting along the parts that are not the way you want – ridges or not as smooth, but, I chose to just remain with the good looking set I have.
And, you are done! You did it!
Please encourage your friends to schedule their mammograms and have themselves checked. Breast cancer, when caught early, can be treatable. According to the National Breast Cancer Foundation “62% of breast cancer cases are diagnosed at a localized stage, for which the 5-year survival rate is 99%.”
In my case, I feel like I dodged a huge bullet and I know how lucky I am. I am so thankful for myself, my family and my daughters too. I hope these mastectomy recovery tips and must-haves are useful to you or someone you love who is going through this. Please feel free to leave a comment below if you have any questions or would like to share your story.
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