May 2016 Surgeries

Midwest

Hello,

My left mastectomy with tissue expanders was yesterday afternoon.I am feeling ok today just sore when I use the pectoral muscles. The plastic surgeon took all bandages out leaving just the one for the drain. It looks uneven but he was not concerned , the fillings should do the job next time. Waking up was pretty confusing but things got better pretty fast.It was not a good idea to eat a little last night as I could not tolerate it. Still, the worst for me was the dry mouth and I forgot to bring the sore throat drops. Luckily, they offered me a Lifesaver and it felt much better after all.Still waiting for the surgeon to see when I can go home.I did ask for a paravertebral block but the anesthesiologist said that they don't do it. He was open to ketorolac injection, pending the surgeon approval. I still do not know what they did. I do not think it is the hardest surgery, the decision to have one side (multi-centric ILC here) or both was agonizing for me.I am on oxycodone pain med after having dilaudid post surgery , They do want me to take more but I try to take the least amount that I am comfortable with. The first walk I was not very steady but the next ones. I was able to walk without help.My surgery sisters, the wait was the worst part, good luck to you all

WenchLori

Midwest, I'm glad to hear you are doing so well.

My PS has sent a surgery request to my insurance company. I called and was reasured that it was filed correctly and should have approval within a few days. Then I'll get a surgery date, I so want this behind me!

Sending healing thoughts and prayers to all waiting for or just getting out of surgery.

GreyKat

Midwest, glad to hear that the wait was the worst part for you. I hope that's true for all of us, that it's not as hard as we think it will be.

GeorgiaRedskin - Glad you like the list idea. It helps me to have it written down for moments when I start to lose my nerve and my focus!

Was doing some grocery stocking up today while I can still lift things. Anyone got ideas for recovery meals? I'm planning on having a giant pot of homemade soup in the fridge to reheat at first, but that won't last forever. The PS's nurse told me I could probably start cooking again after a week, as long as I don't lift the pots or reach high. And everyone keeps warning me about the Dreaded Opiate Painkiller Constipation (insert dramatic music). So I bought prune juice and lots of dried fruit to stew from a cancer cookbook I read. Thoughts?

grandma3X

GreyKat - Milk of Magnesia is the only thing that helped me last time. And drinking plenty of water.

Midwest - so glad to hear that you made it through! I also have a very fuzzy memory of what they did on the day of surgery. It bothered me that I could not remember the details, but I was told later that the anesthesia will do that. I agree that the anxiety of waiting for surgery was much worse than the surgery itself. It is very hard to convince people of that, but I'm actually looking forward to my next surgery. I suffer from plantar fasciitis and the pain was completely gone after my MX in January. What a relief to be able to walk without pain! It eventually came back, so hoping for the same pain-free period after my MX on the 18th

Midwest - Be sure to keep on top of the pain - I've heard it's easier to prevent pain than to try to control it after it's started.

Moderators

Midwest -- welcome and thank you for sharing your experience to help put everyone at ease!

Wishing you a speedy recovery!

--The Mods

sensitivehrt

GreyKat,

I made some frezzer meals. Just have to thow it in the crock pot in the am. Figure I can have family or friends then put in easier containers once cooked. Lots of ideas on the internet. Most of the meals I made, had 5 or less ingredients.

raven4mi

Hi, all. Original surgery was in April, 2016 but am now adding myself to the May, 2016 board due to an additional procedure I'll be having on 5/11 - more on that later.

My original surgery was on Friday, 4/15. I had a bilateral nipple sparing MX (left side prophylactic) with TE insertion. I spent one night in the hospital and was discharged the next day. Honestly, the only pain/discomfort I've had is from the drains and the limited range of motion with my arms – kind of hard to do stuff with T-rex arms! Ha! I was on narcotics as needed for 3-4 days after surgery and then went to Extra Strength Tylenol and was off that pretty quickly. I still have the drains – my PS is being VERY conservative on removing them. My output is currently around 20 cc in 24 hours and he still won't take them out. A bit annoying but I'm doing my best to be a model patient – I'm assuming the risk is not worth taking them out too early. Range of motion in the arms is drastically better and gets easier every day.

I also had SNB and I've read on other forums where people can be so anxious about the dye injection. When my surgery prep nurse called to tell me about it she kept hinting around without coming right out and saying it that it would be excruciatingly painful. Let me tell you, that was NOT my experience! They put a lidocaine patch and ice over my nipple for about an hour prior to the injection and I felt only slight burning after the 4^th of 4 injections. PLEASE, try not to get too worked up over it – even if you have a slightly worse experience than I did remember that it's only a little burning for 3 seconds or so after each injection (4 total.) We're warriors – we can take anything for 12 seconds, right??

As for the new procedure coming up on 5/11, I am experiencing necrosis of both nipples and so am scheduled for nipple excision. And, let me tell you, I'm in a really low, low place about this. Every time I seriously pause to consider what that means I just can't keep the tears from starting to stream. I'm so pissed off about this that I can hardly stand it and I don't know what or who to be mad at: my body for failing me? The BS for doing something wrong? The PS for doing something wrong? God? The universe? SOMEBODY MUST BE TO BLAME AND I WANT TO HIT SOMEONE IN THE FACE ABOUT THIS!! From all the reading I've done, both pre-op and post-op, the failure from nipple-sparing mastectomy is so low (I've ready anywhere from 8-16%) that I can't help falling into a little bit of "Why me???" whining. How did I get so unlucky? Was I just not a good candidate because my breasts were too large? Did something happen during the original surgery to cause a decrease in the blood flow which is causing the necrosis? Was it that damn compression bra they put me in for two weeks after the surgery that caused this? I'm sure I'll never ever really know what the cause was and, even if I did, I'm not sure it would make me feel better but I swear to God I'm so, so angry and sad about this that I just don't even know what to do. The bottom line for me is that, with the nipples saved, I'd at least have a marginal chance of looking "normal" once I get through all this. Now, I feel like I'm just going to look like....well I don't even know what. I can't even imagine ever letting my DH seem me naked again and that makes me so, so, so unbearably sad. The PS keeps saying that he'll make me "beautiful" but I don't really see how I'll ever be beautiful again.

Sorry to lay this on all of you but I don't really feel like I have anyone else to talk to about this. No one really wants to hear about how sad you are during these things anyhow – they only want to know how "strong" and "funny" and "courageous" you are. Well, sometimes I just want to say "F that – here's what's really going on" but, of course, I don't because I don't want to make anyone else feel bad.

Thanks for letting me join the board and vent, and sorry I'm such a downer! I promise - this, too, shall pass and I'll be here to support the rest of you in your battles!

Raven

NattyB

Raven - so sorry to hear about that. I totally feel you though in that in this whole journey it's like - can we catch a freakin break?. But the statistics are what they are just like with this stupid cancer and you got to pull the nipple card too and it totally sucks. Honestly though, I'm pretty sure your DH just wants you well and may not care one bit about the nipples. But there is probably the option after you heal of doing nipple reconstruction down the line - I've seen a bunch and they do look amazing. It wasn't an option for me to keep mine, so I have a plan to draw them on with a sharpie whenever the need hits me. My PS said at least 6 months of healing and totally off chemo until I can do reconstruction if I decide to. Anyways, I just wanted to give you a hug and agree that it sucks and you should vent a lot about it to people who get it. I've grown tired of the "new perky boobs" and "you are so strong, this will be a piece of cake" comments that I literally want to vomit and scream in their faces. But I won't because they are bringing me casseroles. Take care hon:)

WifeMomTeacher

My MRI came back today showing a 7.5 cm tumor (ILC) in left breast and nothing in right. Surgeon says unlikely she can get me in this week, but definitely by Thursday or Friday next week. I am very ready to get this behind me. It went from being discovered 5 weeks ago and barely noticeable to 7.5 cm! I am also having pain in neck, shoulder, wrist and tingling in hand, as well as pain in spleen. I am terrified and ready to get this out! As I understand it, my surgery date will be no later than May 13.

Midwest

WifeMomTeacher, a big hug to you,itis good you are starting the treatment soon.

Raven4mi,you are absolutely right to feel this way, there are so many losses and battles with this terrifying experience. We have to make so many sad choices, so go ahead and vent, we probably all have felt this way.

Grandma3x, thank you for the advice. I have decided to increase the pain medication tonight as I find myself too scared to move and this is not good.I am home tonight and a little nervous about the first night away from the doctors.

Thank you all for the wishes and the welcome. This forum had been my refuge since that very sad March day when I knew it. A big thank you to all who have contributed to the packing list: the pillow for the trip home was a genial idea.

To the ladies going in tomorrow,I will be thinking about you for a no drama surgery and a recovery with not much pain.

sensitivehrt

Sending positive thoughts for all my sisters that have surgeries tomorrow.

Brandi

georgiaredskin

GreyKat-😊 Miralax and Senna always helps me when I get in a bind! (Pun intended). I second the crock-pot meals. My friend made us two of them that we froze before eating (Asian lettuce wraps-the filling and spaghetti sauce).

Midwest-Thank you so much for posting about your surgery experience. Boy I know I am building it up with my fear and hope I do feel such relief when it is over an not as bad as my anxiety is making it out to be.

Raven-Thank you also for your experience and I am so sorry for the crap you have to endure re: the nipples. My BS said I was a candidate for nipple-sparing but my PS said they were too big, and she could get a much better lift without them. The positive, HUGE positive, is without nipples and with reconstruction and nipple tattoos she said I would never have to wear a bra again!! Oh wow, so amazing! I hate bras and throw it off as soon as I get home!!

WifeMomTeacher-praying for you! Hope all goes well

Thank you everyone for the well wishes! Mine is in 2 days and I can't sleep

GreyKat

@Raven4mi - There have been many, many days where all I want to do is punch someone and/or scream. I think we all get the "play nice" attitude because people still aren't ok with women being angry, and frankly, the "empowerment" crowd and the "pink" crowd make me want to scream in frustration. This is not a happy experience for me no matter how they try to sugarcoat it. I think your anger is perfectly normal and totally understandable and I too bite my tongue and play nice at the surgeons because I try not to make a habit of irritating people with sharp knives. I am sorry you've had necrosis. Usually someone chirps about nipple tattoos at this point, but I know it's a disappointment because stick-ons or tattoos are not the same.

They're trying to do nipple-sparing on me. I'm getting heat therapy this week beforehand, hot packs in the OR, a "tropical" heated room after (so they say), and some sort of nitro gel to use for a week after, during which I am supposed to maintain a heated room around 80 degrees. This is my BS's approach to increasing blood circulation and I guess I'll see if it works. I am also hoping to look "normal" mostly for psychological reasons. It's not like I'll be able to feel anything, but I think it will be less jarring to me and my spouse. Still, if it doesn't go well, excision is what will come next. And I would be angry also. Hang in there and know you've got a right to be sad or angry. For what it's worth, I have seen some photos of nipple-less breasts that look good and the women are still beautiful.

Valstim52

Just wanted to chime in. Hugs to all having surgery this week. We are in your pocket.

Rant all you want, that's what we are here for.

raven4mi

Oh my gosh you guys, I felt so bad after posting yesterday that I came back today to apologize and am so grateful for all of the words of understanding. Thanks NattyB, Midwest, georgiaredskin, and GreyKat for your words of encouragement. NattyB, your "but I don't because they're bringing me casseroles" comment made me laugh.Thanks, I needed that!

I just wanted to wish the best of luck to everyone having surgery today and in the next week. I'm praying for all of you. Be sure to update us all whenever you're feeling up to it to let us know how things are going.

For those of you who are anxious about the expanders, I've had mine now since my surgery on 4/15.Currently, they're only filled with air. I should have started getting the saline last week but that's been postponed until after my nipple excision. They're kind of hard, lumpy and a little uncomfortable but there really isn't any pain from them at all and they look good in a bra, at any rate. At this point, that's about the best I can hope for.

Maine1965 – I'm looking forward to hearing how things go after your exchange surgery. I hate to wish my life away, as the ol' saying goes, but I really can't wait to be at that point – I'm sick of sleeping in a La-Z-Boy!

Just wanted to offer up some additional post-surgery ramblings, in no particular order; hopefully it will help someone:

Things are getting better every day, but I still tire out very quickly and easily – just taking a shower seemed to result in a 2hour nap! When I mentioned it to my PS on my last visit his response was "You just had major surgery, for God's sake! Give yourself a break!" For my part, I'm just coming to the unfortunate yet inevitable conclusion that I can't bounce back like I used to! What I'm trying to say is……..don't be surprised if your energy is drained a bit more than you think it will be and get all the rest you need after surgery and take care of yourself!

Once they give you the go-ahead to start showering again……the best tip I've read on these forums so far is using a lanyard in the shower to pin your drains to – once I figured that out, the showering process was SO much easier!

Be prepared to have your drains with you way longer than they're telling you. Absolutely every medical professional I talked to ahead of time with the exception of my PS said "Oh, maybe 1-2 weeks" but I have yet to see one single person on these boards or a single person I personally know who had them less than 3 or more weeks. It drives me nuts when the medical community tells me what they think I want to hear instead of the truth. My PS was straight up with me – he says they'll stay in as long as they need to. Not happy about the prospect of having them for so long but truly appreciated that he was at least honest with me so that I was able to set my expectations appropriately.

Some of you have asked about time off work. I am self-employed so if I don't work, I don't get paid. My plan was to take one week off and then go back to work part time, which is exactly what I did. It's been working out pretty well so far; it often helps just to have something to do to keep my mind off everything. And if anything goes wrong I've got lots of colleagues who can back me up if there's something I can't handle. If it's possible, though, I would recommend taking 3-4 weeks off. I realize not everyone has that luxury, but if I had to do it over again, I think that's what I would do. In fact, after my excision next week I was planning to jump right back onto e-mail the next day but now I'm taking the rest of the week off! Rest and recovery are the name of the game. Zoziana had some very good words of wisdom on this exact same subject in her post on this thread – listen to her!

Some of you have mentioned exercise post-op. I'm a fairly fit 54-year old – I exercised 5 days a week before my BMX and had recently lost 25 lbs, so felt pretty good going into surgery but I'll tell you right now – I can't even imagine doing any kind of exercise with these damn drains in. They're so freaking uncomfortable. Once they're out, I'll be back at it ASAP.

Regarding post-op meals: anyone who provided a meal was an absolute life-saver. I hope you're all blessed with friends and family who can help out in that regard, as was I. I'll never NOT send food to a friend in the future – it made such a huge difference. Another thing I did was to go to a food-prep franchise place and got 7 or 8 meals that just went in the freezer, then my husband and teenage sons were able to pull something out of the fridge a day ahead of time to thaw and prepare. The cooking instructions on those are REALLY easy and straightforward so even the dunciest of family could handle it. Our local franchise is called "Dream Dinners" – look it up and if you have anything similar around you, try to get in – it was so very helpful.

That's all I can think of for now. Anxious to hear how things go for everyone else post-op!

grandma3X

Raven - no need to apologize!! We are all right there with you. I had NS surgery in January and it stayed a nice pink - then had to give it up because they found a "focus" of cancer in the tissue underneath. I think giving up my nipple was harder emotionally than the mastectomy. In my head, if I still had my nipple, then my breast was still me on the outside at least. The nipple removal surgery was very easy, though - it took 45 minutes and I insisted on staying on awake for it, so no long recovery time. (It may take longer if they are removing both of yours.)

Ausbear, TennisPink and Hydranne - sending healing thoughts your way!

raven4mi

grandma3x, YES! You've hit exactly on how I feel - losing the nipples is giving me much more emotional anxiety and for the exact reason you described - I just feel like if I still had my nipples I could still look a little bit like "me". At least I'm glad to hear the surgery was easier. I will be having general anesthesia again, but the procedure will still be done on an outpatient basis. Thanks so much for your input.

Angtee15

Just catching up with everyone tonight. I got the latest surgery dates updated at the top of the thread:-)

I hope everyone is doing well and I'm so grateful for the tales "from the other side" of surgery. It definitely demystifies the experience. I know I'm a bit battle weary from five months of chemo but feel ready as ever I guess. I think I'm more occupied lately with watching the tiny hair buds on my head sprout then this major surgery I have in week lol.

georgiaredskin

Lol that's a good thing Angie! Focus on the baby sprouts! I'm going to try to close my eyes tomorrow when I am anxious and will my baby hair sprouts to grow! That will put the nervou energy to use! Thanks

I hope everyone who had surgeries today came through them well with flying colors. Thought and prayed for you all day!

Raven-thanks as always for your input! Very valuable. It tells me I can do this!

Much love to you all

monicammoriah

Much love to you all.

raven4mi

Hydranne, good to hear from you! Fingers crossed you're going home today and that you're feeling OK. Thanks for checking in. Rest up, stay ahead of the pain, and take care of yourself!

Midwest

Sending you a big hug giorgiaredskin and wildflower7, thinking of you today and wishing your team an unenventful day.

Hydranne, nice to hear you are doing ok, pain medication can do wonders, hopefully you can go home today.

Yesterday was my first full day home and it went peacefully. Walking to the mailbox never felt that glorious and seeing the forget-me-nots flowers in bloom, with that intense blue color, made me feel so good.I might try to pick some lilies of the valleys today for my bedside table. It was a very nice day yesterday and I really appreciated being able to spend some time outdoors. The first night was a little strange as I kept waking up almost every hour, feeling wide awake but I also being able to fall back asleep. I also emptied the drain by myself for the first time. It was not complicated, the belt really helps with it and I don`t feel it at all most of the time.The pain is mostly there only when straining the muscles, I can`t help being grateful right now of having the use of the right side. I will probably still have prophylactic surgery on the right side too as the science seems to be awfully imprecise in finding ILC.

raven4mi, glad to see you are keeping the positive thoughts. Have a good day all.

TennisPink

back from surgery yesterday!! I didn't stay overnight ...they sent me home at 8:30pm. I was SO queasy and tired but DH says the hospitals avoid the overnight stays whenever it's possible. The hospital called this morning to check in though.

For those that don't remember I had a lumpectomy on a 2.3 cm tumor plus a tiny in-situ below it. but with a bilateral breast reduction (per my wishes to come out of this with the size I have always wanted!!) , so both the left and right breast need to heal now! I have a cotton zip up bra with lots of 'stuff' in it today.

I don't know how many lymph nodes...I know she mentioned anywhere from 2-5, but my path report will arrive on Tuesday or Wednesday of next week so I will know then.

This was my first ever surgery so it was a new experience for me and a long day, but it's over (hopefully!!!)

Thinking of all of you...I have read this thread so I have all of your updates. Hydranne ...So glad you had your surgery and I hope it's a good recovery!!

Valstim52

Big hug to Hydranne and Tennispark.

raven4mi

Midwest, glad you're feeling good post-op! Glad your beautiful encounters with nature are keeping your spirits up.

TennisPink, glad you're home and doing well also!

I have a drain tip! For me, one of the most annoying things about the drains when I have to pin them inside my clothes is the rubber of the bulbs rubbing against my sides – they can get really hot and sticky and annoying. I just ran out to Michael's and bought two little velvet drawstring bags for about $3.00 (the kind like you'd put jewelry in) and they're the perfect size to drop the bulbs in and it's SO MUCH BETTER. So if you're going to be stuck with drains for weeks (as it appears I am) then I highly recommend these little bags.

GreyKat

Glad to hear from Hydranne & Tennispink about making it through and managing so far. Hope for a smooth recovery for you! And thoughts with GeorgiaRedskin and Wildflower - hugs and good wishes. Once you're on the other side, you don't have to be nervous or anxious about it anymore, right? The dread event is past. Thinking of you as the day goes on.

NattyB

Raven that's an awesome idea!. My PS said not to be shocked if I kept mine for 4 weeks - I'll have to name them by then! I'm thoroughly dreading not showering for that long - that's what will send me over the edge and into a puddle on the floor. Decided to whack half of my hair off in anticipation (it's past shoulder length now). I'll be one of those ladies that goes to the salon and asks for a shampoo and set like my grandmother did. It'll be getting much shorter in the weeks to come so it's as good a time as any.

Midwest - I'm with you - amazing how just breathing the air outside and enjoying the gifts of nature can be so healing.

So grateful to you ladies who are sharing your journeys - it has helped me so much! And I know I'm not crazy - had so may more funky mood days here lately and I know it's because my surgery date is finally coming closer. I think I have been able to dodge the reality since nothing has really been done since diagnosis (3/30). I'm a little afraid that my family is feeling the same. My oldest is graduating from high school three days after I get home after surgery so I'm pretty confident I won't be making it - we've decided they will face-time me so I can watch. Safe to say big graduation party plans were nixed - he's a great kid and would rather have $ anyways but I still feel like a turd for not being there in person and raining on his weekend. Silver lining though - won't have to spend too much time with my mother in law:)

raven4mi

GreyKat, yes, as a matter of fact.....at least for me, the most overwhelming feeling I had post-op was RELIEF that it was behind me. The waiting is the worst part. Keep your chin up!

raven4mi

NattyB, I realize every surgeon does things differently, but I was able to shower with my drains after only a week. I had intended to do the salon blow-out thing, too, but never had to - my DH helped me wash my hair over the sink the first week, and then I was able to do everything in the shower after that. Go back to your docs and see if it's a possibility. (And love the idea of naming my drains - you've given me something creative to work on! LOL!)

raven4mi

NattyB, I'm so sorry you'll be missing your son's graduation but if it's not too late, don't give up hope yet. Except for being REALLY tired all the time, I felt pretty good after my surgery, and 3 days post-op I was able to be up enough to create the program for my son's middle school musical production and 6 days post-op I attended the show. Now I realize that 6 days is twice the recovery time but you may be OK to go for an hour or so. Prepare for the worst, but hope for the best!