How can I prepare for my bilateral mastectomy?

[RTRM321]

I am 46 years old and recently diagnosed with breast cancer.  I plan for a bilateral mastectomy with reconstruction.  What type of clothing might be most comfortable while going thru the tissue expanders, and implant placement?  Should I stock up on sports bras??  Will I even need bras? I think more button up shirts would be easier to get on and off.  Does anyone have suggestions as to what might make this transition easier and less uncomfortable?

[izzynash]

A related discussion, my mascotomy was started.

[RTRM321]

Just an update for anyone who might be curious!  I am now 4 weeks post op and doing great!  I did have a bit of a set back with fluid build up on my left side, so I am still sporting one drainage tube.  It will be removed next Friday the 18th and then we can start the tissue expansion.  I have most of my range of motion back in my arms, and continue to stretch daily.
My DCIS margin against the chest wall did not come back clear, so I will be in for radiation after the tissue expansion.  There were a few cells of Invasive  Carcinoma discovered as well, though not near the margin, so thankfully I don't need Chemotherapy.   My right breast (the "donated" breast!), did show a few areas of atypical cells, so I am thankful that I chose do have the bilateral mastectomy done, as I don't want to go thru this again!!   I will also be on Tamoxifen as well.
I appreciate all of the valuable information and support you have all given me!  I am so glad to have found this site and all of you! :)

[ncmichigan]

Thanks for asking, C!
I had two areas of microcalcs removed, but there's no way of knowing if it's multifocal and/or bilateral. Close monitoring is about all I can do right now---MRI alternating with mammo every six months. I have multiple other risk factors in addition to the LCIS so my chances for IBC are up to 35%. My oncologist wanted to start me on tamoxifen, but when I stopped my tiny little 1 mg. estrogen tab. at diagnosis in October, I started having horrendous hot flashes they still persist. I'm 62, so I wish Mother Nature would give it a rest already! I've learned here some women have them into their 89's---just my luck! The only other treatment option is BPM, but I'm not ready for that just yet-can't say I won't be at some point, but just not now. There isn't a lot known about LCIS but I've gotten good information and wonderful support here.
You have a wonderful attitude and I have every hope that you'll get through this "detour" and right back on the road to the life you want to live! You'll be in my thoughts and I'll send you more hugs through your recovery!
nc

[RTRM321]

Thank you all for your well wishes and support!!  It does get a bit more scarey as the days go by!!  But, I will wake up, and the journey begins!  I will keep you all in touch of how I am, as soon as I can reach the keyboard! lol!!
ncmichigan~I too believe in a positive attitude. I want recovery to be as quick as possible, as I have a life to live!  I have no time for cancer to beat me!!
I am sorry about your diagnosis of LCIS.   What treatment plans are your options?  Lumpectomy and radiation?  Thank you for the hug!!  
emsmom0815~keep your chin up too!! ;)  Breast cancer is just another one of lifes "detours"!!
C

[emsmom0815]

Definitely, best wishes for your surgery!  You definitely have a great attitude, and you are an inspiration to me.  I am so glad that you have posted all of this, and I will read your prior posts also.  Keep your chin up--you're doing this for all the right reasons!

Shannon

[ncmichigan]

I just wanted to add my good wishes to all the others! You sound very well-prepared and
positive and I think that will go a long way in making your recovery easier. I'm a retired nurse and a firm believer that a positive attitude can help heal us---I saw it so many times when I was in practice. Just being able to give up a bit of control and let others
help out is also a good thing, I think. Let others pamper you a bit, the worst will be over soon and you'll be on your way back to whatever "normal" is for you!
I was diagnosed with LCIS in October, and if BPM ever becomes my treatment of choice, I hope I'm as well-prepared and positive while facing this as you are!
Wishing you an uncomplicated surgery and recovery and sending you a big hug (    ),
nc

[SueYoung55]

Monday? Awesome!!! Awesome!!!!!!!!! Good for you!!! I'm going to tell you that the waiting is worse than the recovery so you are on your way!

Please let us all know how you're doing :)

Best wishes!

[RTRM321]

Sue  
My surgery is set for Monday, May 17th.  Thanks to you and many supportive friends I feel ready for this transition in my life and my fight for the cure!  I sure appreciate all your advice and help :)   I sure can't wait for this new journey to be behind me, so I can get on with my life!! ;)

[RTRM321]

I will find out my surgery date tomorrow.  Most likely next week or the week after.  I like the idea of a hospital bed, but doubt that can fit in my tiny house!  I have many offers of help: my mom, boyfriend, teenage daughter, friends, co-workers, neighbors.....As silly as it sounds, I am more worried about the dogs, cat and birds getting fed, and the weekly chores I do!!   How long until I feel capable of doing the simple things again?
I plan to purchase a few button, or snap up tops.  I have alot of scrub tops, as I am actually a Mammogram Tech full-time!!  Oh, the irony!!!  ;)
Making a list now, of extra long ties for the shower, pins, a list of to-do's, thank you notes,    I don't have a TV in my bedroom, so will have to make my way to the living room.   I have a small house, and I so hope I can get comfortable to sleep.   Thanks for the "patience" advice, as I know I will go crazy knowing things aren't done "exactly" my way!!!   And I will check into the Physical Therapist for movement!!!  Thanks again, you are a world of help!!!

[SueYoung55]

You absolutely want things that clip, snap, zip or button up the front and for the tops you want them in a size larger to hide the drains. You'll want to have an extra long shoe lace that you can tie into a necklace and wear while showering so you can pin your drains to it. Pain meds can cause constipation so you will want something to move things along, so to speak. Some like the smooth move tea but I prefer glycerin suppositories.. they work immediately.

When is your surgery?

[RTRM321]

Thanks for all the wonderful advice!!  I will be sure to have everything ready and onsight to help those that are helping me! :)   I like the idea of waxing my pits!!  I never would've thought of that!lol!!  I will get a couple of additional sports bras, I guess the front clip kind might be best.   Again, thank you Sue!!  A new journey awaits me, and I will handle it well, and appreciate all the help I can get along the way!

[SueYoung55]

oh yeah.. you asked about bras. Ask your PS what they recommend because all of the ones I know send you home wearing one they provide. With expanders you're going to get some really odd shapes along the way so you might want to stick with sports bras until you get your perm's in. Again, ask them, they all seem to have their own ideas of what is best for you.

[SueYoung55]

Please understand that this list is not from me but from a group of women who have walked in our shoes before us..I am just sharing it. Welcome to being a survivor sister.

You can do that surgery and handle it well. Don't worry about what's ahead. My biggest tip for you would be to get those armpits waxed!! You won't be sorry!

[SueYoung55]

Have someone stay with you that first critical night. It's a long night and you'll want to have someone help you with the simplest of tasks. With a bilateral mastectomy, you won't be able to move your arms at all that first night, so you'll need someone to hold your Suck Cup for you. They can advocate for you when you need pain meds and to get the bed repositioned. You should be able to have a cot ordered for the room for your stay-over guest. Have friends bring edible food to the hospital for your husband, and when you feel better, for you! Hospital food is not real food, and it tastes bad too. If it's within your budget, get a private room and a private nurse for at least a 12 hour shift. Get specific instructions on post-operative range of motion and other exercises, what is recommended, what is allowed and what isn't. If you aren't referred to a physical therapist, consider asking your doctor for a referral. Ask your doctor for a copy of your pathology report, and make sure that you understand it! Know and understand your discharge instructions including wound care routine, restrictions, medication timing before being discharged. It should be in writing from the nurse or doctor on your discharge sheet. Follow the doctor's orders!!! Don't try to do too much too soon! A hospital stool is great for your home shower so you can shave legs, pits. etc. comfortably, you can find them at medical supply stores. A detachable shower head makes post-op showering easier. At night attach a large pin to the loop of your JP drain and attach it to the inside of your PJ shirt. You won't have any pulling. During showers you can pin your drain to the shower curtain or tie a ribbon around your neck and attach the drain to the ribbon. Don't forget within your list do include things for yourself; new sheets and small fridge for the bedroom, a T.V., rent some good movies. Make sure that you will be happy with your surroundings. You may not be able to do the stairs very well for the first week at home. For the hospital I also bought thank-you notes which helped me pass the time as I wrote to my friends who helped me through surgery. One thing that I did, and would recommend, is renting a hospital bed for when you arrive home. Call a Durable Medical Supply co. It was almost completely covered by insurance for 2 months...and makes positioning youself soooo much easier. Most importantly: LINE UP HELP! If you can't - arrange things you will need (coffee mugs etc.) to be at eye-level. Reaching up is not only prohibited, but impossible. I'd make a list of those things I won't be able to do for a few weeks. Then, when folks who want to help are around, they would have The List (OK, one of The Lists) to refer to. People REALLY want to help when you've had surgery. It makes them feel good about themselves. And, gives them a power, when they feel powerless to save us from surgery (their feelings, not mine. I think of the surgery as a control opportunity.) Before my surgery, I delegated a clipboard for making a list of things that others could do for me. I had also sent out a letter 2-3 weeks beforehand asking for help. It includes a form that people sent back to me to volunteer. TAKE NOTE: people actually thanked me for asking for help! There are a lot of "angels" out there that want to do a good deed for people in need. Be generous and give them the pleasure of helping you. If you find yourself getting tense because they do it differently, just leave the room or take another shower or a pain pill! I've actually gotten a lot of pleasure out of finding the right person for the job....I'll e-mail you the letter/form. Repeat this mantra: "Everything will be fine..everything will be fine..everything will be fine... Someone else will pick it up....someone else will pick it up...Someone else will get it down...Someone else will put it away...."

Best wishes

[SueYoung55]

Here is a list of suggestions compiled from posts on pre and post-surgery preparations. This list is by no means comprehensive, and many suggestions might not apply to your situation. Hopefully, glean some pearls of wisdom from our sisters who have been through the surgical experience.

Have a list of all medications you might be allergic to when you go for your pre-op appointments. If you have problems with certain anesthetics, with nausea, with throat spasms after anesthesia, make sure that you discuss this with the anesthesiologist during your preoperative consultation. Low residue diet two days before surgery helps. You'll have a lot less gas after the procedure. The anesthesia "slows everything down" so you tend to have gas build up and constipation. Don't eat anything six hours before the procedure, or as your doctor advises. Not even one small cup of coffee! You don't want to aspirate anything into your lungs while undergoing anesthesia. Suck Cups (or Sippy Cups) work great for your hospital bed and at home during your recovery. These are the toddler cups that have a leak-proof gasket in the lid. You can leave this leakproof cup in bed with you with the water that you'll need. You're going to be very, very thirsty. Lip balm for that dry, chapped mouth. Dental chewing gum and travel-size bottles of mouthwash. Large safety pins to hook your drains to your hospital gown/night gown. Earplugs, eyemask, walkman, or "white noise" machine to block out all that awful nighttime hospital buzz. a long light weight robe that ties in the front. If you can't sleep, ask the nurse if you can have a sleep aid. Find out what kind of pain medicine you're being prescribed and what level of pain relief it is. Find out the recommended dosage. (Tylenol III is on the low end of pain relief for mastectomies.) If you're still hurting after taking the medicine or it's not lasting the recommended amount of time: Buzz the nurse and tell her/him. The doctor on-call may be able to upgrade your 'script to something stronger if you need it. Make sure your JP drains are "squeezed in" in the center from the suction. If they look like an oval bulb, then there's no suction and they're not working. The overworked nurses may not be checking your drains every shift so YOU should be aware of what they should look like. Ideally, your JP drains should be emptied every shift. Throat lozenges, sweet hard candy, help with any sore throat from the breathing tube. Make sure you have pillows under each arm for support. You'll be able to lift your arms easier with the added height. Buckwheat pillows conform to your shape and can be very comfortable. Buy lots of pillows of various shapes & sizes I also splurged on a new chair; one of those butterfly shaped chairs that is overstuffed, with an ottoman. I'm glad I did, because I slept in that chair for the first several weeks post-op. It was sooooo comfortable! Much more so than trying to get comfortable lying on my back in bed. make (or in my case buy) & freeze lots of good food clean & organize house. This also serves as a good way to keep yourself busy right up until the surgery, rather than sitting around worrying. Have a haircut, manicure, whatever makes you feel good for the truly brave (and vain), wax your armpits! (ouch....this hurt more than the surgery! but I was glad I did it, because it was about 6 weeks before I could shave under there, and the waxing lasts at least that long). If you do decide to do this, do so at least a week before surgery, in case you get a rash.... Buy some new p.j.s! Ones with button down top, and loose drawstring bottoms (so they are easy to get on and off). I've decided that Old Navy should be the official pj supplier for 'At Risk' women! Their stuff is fun, comfortable, and inexpensive. My pajama wardrobe got a huge boost as a result of this surgery! Wearing elastic waist pants and/or drawstrings will allow you to tuck the drain bag in the waist of your pants, thereby helping to support the weight of the drain (which, I found uncomfortable to carry around w/ me otherwise). Doing so, w/ a big shirt over top really was the best in concealing the drain bag as well. For post-op I really liked the flannel, oversized, button down shirts. I bought sweats that had draw ties and also scrub buttoms which I could make as loose as I wanted. Get comfy slip-on slipper for trips to the bathroom... Sleepware that is loose fitting and buttons up the front. Subscribe to People Magazine. This is a must. Deep breathing and respiratory exercises can help your post-operative recovery. You may be issued a "blow-out" machine by a respiratory therapist to rate your lungs recovery. If you're not instructed on post-operative breathing exercises, ask your nurse about them.