Mastectomy--what did you wish you had known?

Hi Brneyegrl66,

You might want to be happy about your limited ROM immediately after surgery. ;-) :-D

In fact, it is often recommended that you not lift your arm higher than your shoulder for at least a couple of weeks, in order to give your lymphatic system its best chance to heal (apparently the lymph system does heal in that early period whether or not you're constantly stressing it by raising your arm over your shoulder), and you want to give yours its best chance to reconnect any severed lymph channels.

My very best wishes to avoid any lymphedema in the future!

LisaAlissa

I was at sloan kettering in NYC. I wish they would have told me before that PCA-patient controlled analgesia-was reserved for bilaterals!! they told me that in recovery.

My plastic surgeon had told my husband that I would be in a lot of pain and that I would be in hosp 2 days. Unfortunately the surgeon was in charge. But I would think that would be rare.

Bring someone with you to take care of you. If its a double room it has to be your same sex. if its single room, your other half should do.

Make sure you get sleeping pills ordered and stool softners from the get go.

oh my affected arm that lymph nodes were removed-felt tingly for about a year. it gradually got better. but felt like electric shock if someone touched that arm

I had the same weird cold sensation after drinking something cold that Alli mentioned. I also had the sensation that something was dripping down the inside of my arm, starting from up in the armpit. That freaked me out, I thought I was bleeding each time I felt it and my poor husband had to check my incisions each time to reassure me that all was well. I think I remember my surgeon telling me this particular sensation was from the lymph node removal.

I also didn't realize I would need as much help as I did for a few weeks. (But that varies greatly from person to person--some women bounce back quickly but much to my dismay I didn't!) I wish I had known to wear some silky pajama bottoms to help me slide in and out of my recliner or off the couch more easily I wore cottony yoga pants and they gripped the chair upholstery, which made getting up more difficult and more painful. Sounds crazy but it was something that was really hard for me to do!!

The header from this thread contains a great deal of helpful information. Sift through and use what you think will apply to you. I took pretty basic stuff to the hospital, but a method for communicating with distant family was useful - we Skyped on a laptop. I didn't sleep in a recliner, rather used a bunch of pillows. I would recommend having your pharmacy use non-childproof lids on your meds if you don't have young ones at home (I find the childproof lids to be adult proof as well, lol!) I second having a supply of plates/cups at counter level, possibly even paper ones to minimize doing dishes. I also had small containers of drinks in the fridge so I didn't have to lift heavy juice or milk bottles. I suggest having a large insulated cup with a lid and straw - I knocked a cup over at one point. My husband also got lamp dimmers, inexpensive and helped me not reach over to turn off the bedside light. I linked the info below. Having a shower with a handheld sprayer was invaluable.

https://community.breastcancer.org/forum/91/topics/699896?page=33#idx_979

http://www.homedepot.com/p/Lutron-Credenza-300-Watt-Plug-In-Lamp-Dimmer-White-TT-300H-WH/100001525

Hi Tara

I had Bilateral Mx and Tissue Expanders

Here's my list

1) Clothes - I found button through shirts, blouses and pjs were the only thing I could wear for the first three to four weeks as it was painful putting anything on through my head 

2) Keep all things you need within reaching distance, including glass and mug. You cannot reach up to a high cupboard. (On one occasion was on my own for  a couple of hours and could not make a cup of tea!)

3) Battery-operated toothbrush so helpful! I don't think I could have brushed my teeth without one.

4) You may need help putting on jackets and cardigans.

5) I could not hang jackets in the wardrobe.

6) Beware of fire doors - even getting round the local hospital and shops was a nightmare. You may not have the strength to open the door. I would stand around waiting for someone to turn up to open for me. And boy did I get some looks! Even opening car doors was tough until a couple of weeks ago! Standard joke with friends that I needed a driver and a butler!

7) You will need help getting out of bed for the first couple of weeks.

8) See that you are given good effective pain relief. I used a selective COX 2 inhibitor called Eterocoxib which had 24hour cover and was brilliant.

9) Be ready to accept help. You will need it. If you want to be as independent as possible stock up well before your surgery. At home we had jokes about preparing for the great siege - major shopping sprees and cooking sprees in the days running up to surgery. Part of that was escapism, but I did find it helpful post op!

10) Be ready for the highs and the lows - there's the good days and the bad days- mood swings, tears, all part of the healing process. Days when it is difficult to look in front of the mirror and you want to run away from yourself. Accept yourself when it happens. Let the wave come on. But then it will ebb away again. And you will find peace and strength again.

11) Retail therapy helped the lows no end. Make up, jewellery and scarves were my saviour in the first few weeks of feeling part of me had been taken away. 

11) You'll be limited in what you can do after surgery - so stock up on books if you like reading. Here's my reading list, which my friends considered a tad heavy - but was just right for my mood:

a) A Taste of My Own Medicine - Ed Rosenbaum

b) I wore lipstick to my mastectomy - Geralyn Lucas

c) And then came life - Geralyn Lucas

d) Red Sunshine - Kimberley Allison

And movies:

a) Miracle from Heaven

b) Decoding Annie Parker

c) I wore lipstick to my mastectomy

12) Oh and Alli and kcat mentioned the funny sensation you get after taking a cold drink and yes it's such a weird sensation. I'll go one step forward. I could distinguish between cold water, hot coffee and fizzy drinks by the three different sensations that I felt across my chest!

Wish I had known how cold my chest would be in winter. I had to wear a camisole at all times diring the winter.

I think you've gotten some good tips. I will add that everyone's experience varies so don't spend too much money up front for things you, as an individual, might not need. I had a bmx, with one step implants, not TE's. I needed no help getting in/out of bed, though I used a small step stool because my bed is quite high. I had no problem with doors of any kind and was actually surprised by how much I could do. I found inexpensive ,stretchy, cotton tank tops at Target and was able to step in to them and pull them up. I still wear them under clothes when I need a bit more warmth. We are all different and although you want to recover as comfortably as possible, you may want to wait and see how you feel. It's hard to believe my bmx was almost six year ago! All the best to you.

I find it interesting that some MX patients are told to restrict arm movement for a certain period of time after surgery and some are encouraged to start full ROM exercises immediately. I was sent home the day after BMX with two pages of arm exercises to start that day, twice a day. It wasn't easy that day, but I regained full range of motion very quickly. (No pain, just tightness at first.)

Yes! I almost had a meltdown the other day when I couldn't reach up to get a coffee mug and hubby had gone for a walk!

I returned to work after only 4 days, and I still had the drain tube in. The drainage got worse after that. I learned that I actually did need to rest, to let my body heal. But, I was very healthy / active going into this; I didn’t have the many problems that others have mentioned. Other than learning that I shouldn’t have tried to return to work so quickly, I learned that this whole thing wasn’t as bad as I was expecting

Many BC survivors I know were only given the option of implants after TEs. I was fortunate that I knew about immediate natural tissue recon done at same time as MX. i don't have the issues with cold, rippling, not looking/feeling like natural breasts, etc. So speaking for them, I wish someone would put all recon options on the table for every patient undergoing mx instead of just mentioning the recon options done in the immediate area.

I would have asked the pharmacist to not put child safety caps on my pain meds. Right after surgery, you do NOT have the strength to open those.

another help by me because I truly am in the after stage...24 days to be exact...biofreeze on the skin that is around...not on...but around the incisions calms the heat and sunburn feel tremendously if you have it...sandpaper feeling wanes and you are more comfortable...a snug cami in the underwear section of Kohls or 5th max (shapewear...no seams) helps stop movement of fabric and with a sponge puff (put the puff in the fridge to make it cold) with Johnson's lavender powder helps a lot to reduce friction and absorb moisture in the armpit that might feel sticky....keep up on the meds...no one wins when pain is out of control and you feel desperate....bad cycle and ay take a couple days to break....best of luck to everyone...hope this helps someone as I am still getting there myself.

That I had a choice who did my plastic surgery. I was just told who was going to do it and they were terrible. I've had 3 revisions and am now going to a new doctor for my 4th because of asymmety and pain.

How much my sex drive would decrease.

Really about any possible side effects. Nueropathy is my worst one.

How much I would miss my breasts. I needed therapy after.