Hi, I have cancer
May 17, 2018 5:32 AM   Subscribe

I received a diagnosis of DCIS about two weeks ago, following a biopsy. Breast surgeon suspects underlying invasive cancer, perhaps still stage 0, could be stage 1 or 2. Because of the size of the tumor and all the other reasons, I am choosing a double mastectomy with no reconstruction. Surgery is next Wednesday, early in the morning, and is outpatient.

Please give me all your helpful advice! I've never been put under before, never been hospitalized, so this is totally new territory for both me and my spouse.

Specifically I'm looking for your own or your loved one's personal experiences following mastectomy--what could you not do without, what made you feel more comfortable, what helped/hindered with wound healing, what helped/hindered with the drains (how many shirts with the inside pockets should I be acquiring?), what are things that the big pink book I was given glosses over or doesn't address? What do you wish you had done before the surgery?

Also looking for experiences with general anesthesia--not horror stories necessarily but what are some things I may expect/be prepared for in the hours and days post surgery.

So far the support and kindness from the medical professionals is top-notch. I live in a city, close to my PCP, restaurants, pharmacies, etc, and I'm fortunate to have a spouse with flexibility in his job and no small children to care for (we do have two young, active dogs). We have a market-place insurance plan that hopefully with not be a nightmare of bills and denied claims and out-of-network issues in the upcoming months.

Thanks you all! This is a sock account for privacy, but AskMe has come through for me many times in the past.
posted by sockoffleagulls to Health & Fitness (21 answers total) 5 users marked this as a favorite
As far as general anesthesia goes, sometimes they don't tell you that it can take months and months to feel normal again. Also, you might experience some forgetfulness; totally normal.

Really, be kind to yourself. Rest SO MUCH MORE than you think you need to. If you're a regularly active person, this will be hard. But if you push yourself too hard, you'll just feel crappy and no one wants that!

W/r/t the insurance, just keep up with it. Keep the EOBs with the bills. You might even want to put it all in a binder together, or at least a folder. If you talk with claims people, take notes on the claim paperwork. You may end up getting bills from the hospital over things that aren't covered. If you do, don't hesitate to ask for payment plans or discounts for paying in full.

All the best to you!
posted by cooker girl at 5:41 AM on May 17, 2018 [4 favorites]

Hello - I’m so sorry to hear this. I only had a lumpectomy so I can’t offer mastectomy advice, but I can strongly recommend the forums at breastcancer.org. They were a lifeline for me and three years out from diagnosis I still have a core group of friends from all over the world who meet up in person when we can. It is awesome.

Anyway, the surprising thing to me with the anesthesia is that I was deeply, deeply nauseated for two days after surgery. It’s worth asking ahead of time for pre-emptive Zofran. I had a hard time even drinking water. Tiny sips of ginger ale was the best thing, so have some of that on hand. I also wish I’d gotten off caffeine beforehand because I have a pretty serious addiction and going without coffee on the morning of the surgery was a straight up guarantee of a debilitating headache even if everything else went perfectly.

Please feel free to message me at any time about any of this. Early stage breast cancer is so often portrayed as not a big deal, but it’s devastating emotionally to every single person I’ve met who goes through it.

On a practical level, make sure you have a book or iPad or some way to entertain yourself. Oncology is better than most disciplines in keeping to a schedule, but there’s still a lot of waiting around.
posted by something something at 5:42 AM on May 17, 2018 [5 favorites]

oh, god, I'm sorry. Glad you're catching it early of course.

I haven't had that surgery, only other surgeries. General anesthesia can be constipating. Have some laxatives around (go easy! Only take if you need!) and don't eat a lot the day before and after. But of course do have some easy, tasty foods ready so you won't have to cook in order to eat well.

And waking up from major surgery can be... hard. You may shake. Your husband will be there holding your hand but just remind yourself that this IS hard and you're brave and a badass.
posted by fingersandtoes at 6:21 AM on May 17, 2018 [1 favorite]

From a husband here - my wife had a double mastectomy with reconstruction.

Drains - they are a pain; we just used large safety pins and pinned them on the outside of her shirts. Don't know if you'll have to but we had to record all the drainage, so you'll need something to chart it on. And you may want to sleep inclined for a while.

Anesthesia - it will take a while to 'come out'; just let it happen. Drink as much fluid/water as you can stand once you're awake and able. But it does take time to flush it out of your system.
Ginger is good for any nausea but something prescription on-hand is good to have.

I hope you're husband is a full participant in this event - it really p*ssed my off at the number of husbands that were only marginally involved in their wife's care... GRRRRRR

Be gentle with yourself; recognize that this is all new territory for you both. It can be a relationship growth experience if you'll let it.

Best of Luck and a speedy recovery!

posted by sandpine at 6:50 AM on May 17, 2018 [4 favorites]

I had a lumpectomy last summer.

General anesthesia affects people in many ways. I was crying when I came out of the anesthesia, but not from any pain. I was just super emotional, and the nurses were great and just kept telling me that it was ok and not to worry about it and it was a normal reaction. Don't worry about anything you may say or do when recovering from the anesthesia--they have seen and heard it all.

Stay on top of your pain meds. I was able to get by on extra strength Tylenol rather than filling the prescription I was given, but your mileage may vary. Do what you need to do to be comfortable.

Wear comfortable clothing that day and the days after--pull on pants, something soft and buttoned down all the way down the front on top, and slip on shoes. You won't have a lot of arm movement.

Judge for yourself how much you want to look at online. It really helps some people. It made me more anxious and I finally made myself unplug. Again, you do what's right for you.

Pay close attention to your doctor's instructions on not lifting things, etc. after the surgery. Don't cheat on this. Even if you think you're feeling better, stick with the timeline your doctor gave you.

Best wishes to you. You will get through this.
posted by bookmammal at 7:01 AM on May 17, 2018 [1 favorite]

Best answer: Fellow flattie here! Other than my mastectomy, I've had a number of surgeries, and honestly this one wasn't bad. Really! That said, I didn't have any lymph nodes removed, and I do understand that can increase the discomfort.

Since you are not having reconstruction (personally I think that's a good choice), be very clear with your surgeon not to leave any extra skin or 'dog ears' under your arms. Sometimes they do so "just in case you change your mind" and need room for expansion. You don't want to have to go back for a skin clean-up surgery.

General anesthesia was no biggie for me. One minute you're counting backwards, and the next you wake up. You'll definitely be tired and sore, but it's not unmanageable by any stretch. If you feel nauseous, let a nurse know right away, and they can give you medication to help.

Regarding aftercare, I highly recommend a mastectomy camisole with drain pockets inside. The drains are a nuisance, but they're not painful, however you definitely don't want the lines catching on anything! Your insurance should cover the cost of at least one.

Take it easy in the few weeks afterward and follow any gentle PT/stretching instructions to maintain mobility. Avoid lifting anything even moderately heavy and let your husband take the leash on dog walks.

For more information and inspiration, check out the Flat & Fabulous Facebook group.

For about a year after my surgery, I wore foobies (prosthesis), but now I'm comfortably flat all the time, and I rock the look, if I do say so myself!

Wishing you the best of success with your surgery and future well-being!
posted by ReginaHart at 7:14 AM on May 17, 2018 [8 favorites]

I had a double mastectomy last year for non-cancer related reasons, so my experience may be a little different, but recovery should be similar. It was also my first major surgery, so I can empathize.

Talk with your surgeon about what you are expecting, and what type of incisions they will be using. Also, discuss the potential for dog-ears and how to avoid them. Depending on the surgeon and type, you may not need drains.

Surgery prep & the surgery itself was easy. Obviously be completely honest with your hospital staff and the anesthesiologist about any drugs you are taking, known reactions you have to things, what your sleep cycles can be like, etc. (We found out the hard way that I try to start bar fights when coming out of GA.) Find out how long the hospital expects you to stay for initial recovery (12 - 24+ hours). Pack socks, a preferred pillow, a preferred stuffed animal or blanket, iPod with music/pocasts, and baby wipes. Feel free to pack some distractable activities, but don't be surprised if you end up not doing them. Avoid things that require a ton of lifting or any sort of arm movement.

Make sure you buy plenty of soft, button up shirts you don't mind oozing on for the first couple weeks (Goodwill is a great resource). Invest in a good wedge pillow, a sleep mask, and if your mattress is on the softer side, plan to sleep on the sofa for several weeks. If you aren't a back sleeper, start working on getting used to it now, because that's all you will be able to do for several weeks. Buy a spare set of sheets you can ooze on and pitch later.

You won't be able to lift your arms for a couple weeks, so make sure you have things you use often at waist height. You will need help doing most actions for the first several days. You are going to be constipated from the GA for a couple days. The hospital will give you a prescription for stool softener, but also invest in a laxative, Pedialyte, and easy to eat comfort foods. Drink lots of water. Be prepared to pee a lot, and possibly need help doing so.

Be prepared to be sore, tired, and useless for at least a week, possibly more depending on if/when you get drains out. I ended up binge watching all of the new MST3k plus a rewatch of Once Upon a Time. Drains are more annoying than troublesome. They will teach your caretaker how to change them and keep everything clean. Drink LOTS of water.

As soon as you feel up to it, and your surgeon is ok with it, start moving. Walk, even around the house, just to get the blood moving, alleviate some boredom, and continue to work the GA out of your system. I started taking walks around the block about 2 weeks in, and it really helped.

I'm so sorry you are going through this, but best of luck! Feel free to PM with any questions.
posted by RhysPenbras at 7:30 AM on May 17, 2018 [3 favorites]

cooker girl is totally right, a general anesthetic will wipe you out for months. I had major surgery (abdominal) a few years ago and found that for a long time afterwards I needed an afternoon nap, or I just couldn't function. If you're a reader, make sure you have lots of books or magazines you can dip in and out of. I wasn't able to concentrate on anything too detailed for a few weeks after the operation.

It was a few months before I felt confident enough to drive again - and you might find your insurance has a restriction on how long you have to wait after major surgery before you can drive again. Worth checking.

The anesthetic will also slow your system down, so you'll probably find you'll need a laxative. That first BM after the operation may take a week to arrive, and it'll be painful, oh God, like giving birth. Don't be afraid to mention this to the nurses, they'll be able to arrange for you to get a laxative to help move things along.

You might also find you have crazy mood swings, with crying jags for no reason. Again, a side-effect of the anesthetic, and perfectly normal.

Showering is also difficult post-surgery, as you can't get the dressings wet. I found I was able to finagle a shower by wrapping plastic kitchen wrapping film around me to cover the wound dressing to keep it dry. You'll probably need someone to help you do this, as lifting your arms up might be out of bounds for a while. (I had to wrap the film around my tummy, so it wasn't a problem for me.) If you have a hand-held shower rather than a fixed head, that'll also make it easier.

Sending you my good wishes for a successful surgery and a speedy recovery.
posted by essexjan at 7:31 AM on May 17, 2018 [1 favorite]

OO essexjan's comment reminded me, invest in and install a shower wand. It makes showering so much easier, once you are finally allowed to do so.
posted by RhysPenbras at 7:33 AM on May 17, 2018

It's likely going to be hard to raise your arms above your head for a while. Reaching for things in upper cabinets or washing your hair might be difficult. If you have dressings that you can't get wet you may want to see if your spouse can wash your hair in your kitchen sink for you, if you have a spray nozzle.

You might get incredibly tired unexpectedly. I had a reduction, not a mastectomy, but two weeks after surgery I was cleared to drive and I went to Target by myself. After 45 minutes I got so dizzy and exhausted I nearly passed out. When I made it to my car I had to sit there and rest for 15 minutes before I felt well enough to drive home.

Miralax is your best bet for a stool softener, it's tasteless and mixes into any liquid without any change in texture. Maybe think about taking it a couple days before your surgery.

Depression or other mood changes after general anesthesia is common. Keep that in mind when you start feeling off. Also hair loss can occur, but it's not permanent.

Be kind to yourself and don't overdo it, even if you're feeling better. I went back to work for half days and I was so exhausted after four hours. I wish I could have taken more time to rest and heal.
posted by elsietheeel at 7:37 AM on May 17, 2018 [1 favorite]

This sucks; sorry it's happening to you.

Do your damn PT (including beforehand, if you can) so you're in the best possible shape before/during/after the surgery & recovery. DO YOUR PT.

Have your spouse be your traveling secretary: he writes down every word that everyone says in every appointment. If you think of a question, it goes in The Notebook until the next appointment. You copy down your own data there, like the dates that the drains come out. That way you can both rest assured that if your memory fails you, The Notebook will back you up -- and some of the pressure is off to set aside emotions and be all clinical.

And ask any questions that occur to you, and repeat them until you feel you understand the answer. If the doctor wants to draw something, let them do it in The Notebook. You're not dumb, but this stuff can be complex. You're entitled to understand what's going on with your body.

Get a comfy chair now: you'll have a few days-to-weeks of being a chair-dweller. :7) Revel in it! Some people rent, some people buy, some people borrow. But a good chair is helpful for reclining and maybe even assisted standing.

Set up a schedule at a web site like http://lotsahelpinghands.com for meals and rides and any tasks you are comfortable accepting help with. You have people, and they will want to help but they won't know how. Your spouse should populate this ahead of time and send out invitation emails to anyone you think would help, and anyone who offers.

Some visitors don't know what to do when they visit: even your dear friends may turn out to be spooked by The C-Word. If they're showing up then they love you and they're doing their best; their comfort isn't your responsibility, but be honest with them and give 'em a smile.

Some people give DCIS the side eye and say it isn't cancer. Fuck that noise: you're doing what's right for you. You've taken responsibility for yourself and woe betide anyone who gets in your way. Go, you!
posted by wenestvedt at 8:29 AM on May 17, 2018 [4 favorites]

Ditto on a wedge for sleeping at an incline.
You may find it helpful to have a heart-shaped mastectomy pillow or two - especially for protecting yourself from a seatbelt while riding in a car - such as the ones sold here: http://www.mastectomydesigns.com/
A sleep mask if you'll be spending substantial time in the hospital post surgery.
The Clio BeautyTrim razor -- underarm shaving post mastectomy/lymph node removal (if you are a person who is so inclined) with a standard razor sucks.
Gentle Touch makes the BEST post-mastectomy camisole/pajama sets. They're cotton, rather than a blend, and have velcro closures that are easier than buttons/snaps.
Moroccan Oil hair treatment - only use a little! - dramatically cuts hair drying time, which can be helpful when you can't lift your hands/arms.

Wishing you all the best with your procedure and recovery. <3 <3 <3
posted by sutureselves at 8:54 AM on May 17, 2018 [4 favorites]

Oh, and Palmer's Cocoa Butter - or any cocoa butter preparation you like - is lovely for soothing scars and keeping them supple.
posted by sutureselves at 9:01 AM on May 17, 2018 [1 favorite]

Consider hiring a dog sitter (or at least a dog walker) for the days around your surgery, just to off-load the responsibility from your spouse.
posted by ewok_academy at 11:33 AM on May 17, 2018 [1 favorite]

I've had two abdominal surgeries. Things I recommend:
A pill tracker for your meds (I use Round on iPhone)
A bunch of ice packs if they recommend them so you can swap them out easily.
Meds for your digestion! You may be blocked up or you may get the opposite. Pain meds can cause stomach aches and heartburn.
Plenty of pillows to prop yourself up
LONG phone charger within reach (and something so it wont' fall onto the floor out of reach like a cable clip)
A side table for meds/snacks/remotes/lamp
A trash can nearby
A fan in the room and extra blankets (meds and pain can mean sweating or chills from ice packs)
A TV/Computer/iPad near you (We moved our TV to our spare room/office when I recovered from my last surgery)
If you're prone to nausea you can do the scopolamine patch. (Note it may give you double vision).
EASY to make food and snacks- microwave meals, leftovers, takeout, cereal, whatever.
LOOSE comfortable clothing. Probably want some button up or zip up stuff for this situation.
Dry shampoo (unscented Dove is my fav) and a few washcloths for freshening up.
Shower stool (Personally I took VERY shallow baths of a few inches that were below my incisions to clean up because I wasn't well enough to want to sit or stand in a shower.)

I also found it helpful to put a pillow on my tummy - especially on the car ride home you may want something like a like that to hold ice packs if you have any to your body and give somewhere for your arms to rest without pressing on sore spots.

For me, I remember being rolled back, then waking up in recovery in what felt like a split second later. Stuff is fuzzy before being discharged and on my way home. My only long reaction to anesthesia is feeling a bit groggy for a few days. My first surgery I woke up shivering uncontrollably. They said it was normal and I also had a big ice pack on my tummy. But everyone is different.

I also find that pain will get WORSE before it gets better. You initially have IV meds, anesthesia and shock so pain can feel not-so-bad so you've got to keep up on meds to catch it before it gets bad. Just acknowledge that it's going to suck. So you just have to GET THROUGH IT even if you do it one minute at a time. And slowly things will heal. It's okay to be frustrated and cry and whatever. You don't have to be brave or strong, you just gotta survive it.

Best wishes and a speedy recovery!
posted by Crystalinne at 11:55 AM on May 17, 2018 [4 favorites]

Bilateral mastectomy here. I now have a ballet dancer's profile!

Wriggle gently. A lot. Wriggle your shoulders, wriggle your arms, wriggle your back. Gentle stretches. You can start these before you come very far out of the anaesthetic. keep doing it all the time. it will make a HUGE difference in how soon you get mobility and strength back. Do yor physio. Better to do more not as extreme than fewer, more extreme stretches.

Fleece pajama tops over post surgery wounds and radiation burns are the most comfortable things I have found. I have been wearing them outdoors as shirts unapologetically.

I got a seroma - trapped fluid, after they took my drains out. It was hilarious. I sloshed like a half empty pickle jar. It was a little uncomfortable at the bottom as the weight of the fluid was pulling on my skin where it connected to the fascia, but it is slowly going away and not a problem.

You already have a compression bra, right? A compression bra to prevent swelling is a good idea. Bring it to surgery with you and as soon as you can sit up at all get help putting it on. I also wore pajamas to the hospital, and carried a familiar pillow and a teddy bear.

The opiates burned a little going in just before I passed into the long dreams. I was surprised by that. Happily I went to out very soon after that started but rather than being scared by thought was, "Ow! I wanna be unconscious soooon, please!"

I used a pouch with a neck strap to hold my drains, rather than pockets. I had three drains, they all fit into it and when I slept I dangled the pouch over the side of the bed. You could make one with fabric and safety pins if you like that idea but can't sew. My pouch was made of flannelette and was much like a shoulder bag with a long strap and a two quart capacity. When I wanted to be discrete and hide the pouch I just tied a knot in the strap so everything was hidden under my shirt.

I never felt like my breasts were part of me. They were something that grew on me and although I definitely feel female they didn't seem part of that. I was female and I was mee before I had breasts so I didn't need them for either part of my identity. Once I had kids I started thinking of my breasts as like my children and my eggs. They weren't actually part of me, they were all something that needed my body to survive but were separate entities. All those eggs, after all, had formed in the tiny fetus I used to be back when my mother was pregnant. They weren't part of her, but the choices she made during the pregnancy have hugely impacted them. I was born with all those eggs in me ready to ripen, yet they weren't me, they were potential halves of people who were dependent on me. Then I started to think of my uterus, ovaries and my breasts as part of my children. My breasts weren't there for me, nor my uterus, I had them purely for the sake of those kids. The breasts that had mattered to me were my mothers, and my breasts were only part of the next generation. If I had decided not to have kids my breasts would have been not only absolutely no use to me, but a decided liability as well. I had these thoughts long before I got surgery. So I don't at all feel that I lost a part of me, or lost something integral to me at all.
posted by Jane the Brown at 1:11 PM on May 17, 2018 [3 favorites]

Marisa Acocella documented her experiences being treated for breast cancer in the graphic memoir Cancer Vixen (written using her then-married name).
posted by brujita at 1:18 PM on May 17, 2018

I had a bilateral mastectomy a decade ago (also DCIS). Biggest surprise: Depression hit me hard and swift a few days post-surgery. I felt like I was doing pretty fine until that point, and then I was crying and couldn't stop. I had a lot of anxiety for a long time afterwards. I was able to intellectualize things in the month leading up to my hospital stay, and I was unprepared for how much it would traumatize me. So leave room for your feelings to change, and make sure you care for your mental and emotional wounds as well as your surgical ones.

I wasn't used to sleeping on my back, but that was my only option for a while after the surgery -- although I had tissue expanders in, and that definitely made it much worse. Sleeping in a recliner worked well for me, because it curbed the urge to roll onto my side. If I slept in a bed, waking up with all the pain killer worn off and having to sit up was so painful that it'd take me 30 minutes to psych myself up for it. I made sure my pill bottle and a glass of water were in reach after the first time I did that.

I was on Percocet for a couple weeks, and it knocked me out all the time. When I stopped taking it, my body had forgotten how to sleep on its own. I took (time release -- regular didn't work) Ambien for a month and that set me straight.

Don't let your doctors push you around. More than anything, I wish I'd stuck up for myself more and made the default choice less often.
posted by katieinshoes at 4:05 PM on May 17, 2018 [1 favorite]

I'm trans and had a mastectomy for gender reasons. (Approximately the same surgery--when cancer is involved, there's obviously concern about removing all tissue and my mom had lymph nodes removed. ) The surgeon suggested buying cheap pillows to stick under the mattress at the head of the bed, which was a good suggestion. I had a compression vest post-op and kept the drains safety-pinned to that. You'll definitely want button-up shirts, but they don't need to have pockets or anything.

Put your spouse in charge of keeping track of what pills to take when. I think I had a muscle relaxant and a painkiller on 4 and 6 hour intervals and my mom was only on top of it because she was writing it down. I had a vicodin prescription and I think I took one before leaving the surgery center (or when I got home) and then another that evening and that was it. Maybe one the next day.

How people react to anesthesia really varies. Some people are knocked for six for months and others feel totally fine a week later. You basically want to keep in mind that post-op depression is a thing, even if you're someone not normally prone to depression. If you like prunes, anesthesia is a good excuse to eat prunes. If you don't like prunes, buy some laxatives. (You may or may not need them.)

The consensus from my mom and a cousin who both had mastectomies with reconstruction was that the reconstruction was the more painful part. I think I had a fairly easy time of things overall, but honestly the worst part was having the drains out. It doesn't really hurt, but you can feel them coming out and it's really weird. I sort of forgot to breathe when the second drain was coming out and was too busy being light-headed to be interested in seeing my chest, so that was a bit underwhelming.

Ridiculously, I have an 18KB text file about my top surgery experience I can send you if you me-mail me. The first half is irrelevant to you, but I apparently wrote it a week and a day after surgery and wrote down what I did/how I felt that first week. (Keep in mind that this was a positive experience for me. If you're not in the right frame of mind for that, perhaps a partner or friend could read it and summarise or edit out the bits where I'm being excited. I had nipple grafts, which presumably isn't an option for you, so there's some mention of that, I think.)
posted by hoyland at 4:23 PM on May 17, 2018 [2 favorites]

cooker girl is totally right, a general anesthetic will wipe you out for months.

I want to throw in a "not true for everybody" here. I have undergone three major surgeries in my life that required general anesthesia, and for each one of them, one minute I was awake, and the next minute I was sort of like coming back online. It took maybe five minutes to feel 100% me with no residual tiredness or any memory problems.

So, general anesthesia affects different people in different ways, and I have no idea what the factor is that makes the difference.
posted by tzikeh at 10:40 PM on May 18, 2018 [1 favorite]

Yes, there is definitely a spectrum of how fast you will recover and how traumatic you will find it. For me on the pain scale of 0 is no pain and 10 is the worse pain you have ever experienced the post surgical pain ratcheted up as high as a 2. I did take a tylenol3 at bedtime after I got home from the day surgery, but I took it preemptively in case the pain woke me up. In the morning it felt exactly as it did before bed, so I never took any more of them. For me the hardest part of the surgery is the swelling on the right side where I had fifteen lymph nodes removed, and then radiation. You will be having neither radiation nor lymph node removal, so you might go through it incredible easily if you are lucky.

But you might go through it badly, hurt a lot and have psychological repercussions - both are legitimate and possible. My good experience makes me aware how incredibly, incredibly lucky I am that I could have gone back to work the day after if I had had to, and how little suffering I had to go through, and that in turn makes me feel very sad and protective for the people who suffer more from post operative pain and who value their breasts. There but for the grace of God goes Jane the Brown. Meanwhile if you have a bad experience and the pain is bad and you feel miserable, my good luck and quick recovery is something to look forward to, because even if it is bad at first it is definitely possible to make a transition to no pain and great comfort and pleasure in your new experience. Yes, it was nice to look like a tavern wench with cleavage, but it's also nice to look like a ballet dancer. You can get to where you are pain-free and happy.

Best wishes - hope the surgery recovery goes very, very well!
posted by Jane the Brown at 10:24 AM on May 21, 2018

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