May 2016 Surgeries

hey momof6littles - 6??wow! 3 little ones exhaust me!! - I am pbmx the day before you!

I haven't been tested for brca as they suspected it would be negative and it's result doesn't affect my choice and family history / evidence anyway.

I am a bit nervous of how I will cope being mummy after the op... Have husband home for two weeks from the day of the op.. Hope the little ones remember to go easy on mummy cuddles!!

Midwest, I have to go to the radiologist to be injected with radioactive drugs by IV an hour before I report to surgery, they tell me it's so they can track the lymph nodes?? I'm hoping I can keep the IV in so I don't have to do it a second time as it's at another building in the Medical Center. I asked about injections in the breast and my BS said they won't do that for me. I'm hoping I can keep my nipples, PS said he wouldn't know until he's in there. I'd rather make the attempt and fail than to not have tried at all. I see that some BC Sisters here have lost their nipple after surgery. My heart goes out to all that may have done so...

The dye injections for Sentinal Node Biopsy (SNB) are done in a variety of ways. Mine was done (bi-laterally) in pre-op by a representative from radiology and consisted of four injections per nipple, given at the clockhands noon, 3, 6, and 9. I did not have any numbing meds (some do) and it stung for just a few seconds. Others go to radiology and have this done just prior to surgery, and others have it done the day prior. Some have both tracer and blue dye, others have one or the other. Some feel this procedure is painful, others don't. There is not a single consensus for how this is done - so if your procedure is different from others don't let that worry you.

wench - the SNB procedure is done so that the node that is closest away from the breast - the one most likely to be a good indicator for node involvement - can be identified. This procedure has been around for quite a while, and was developed to try to minimize the number of nodes removed, and the lymphedema risk, as prior to SNB all level 1&2 nodes were removed as part of the mastectomy.

Anyone else had/has to put creme in the nose before the operation so to avoid bacteria getting to the breast on the day of the operation? I haven't heard you talking about something like that and I was wondering if they do it only over here.

Hi everyone! Still heavily doped up so I wanted to take my 15-20 minute window of lucidity and update. They did not readmit me because I refused to go to the ER. The surgeon was emphatic that it was either the ER or if I thought I could keep pressure on the open bleedint and wait a couple hours, to be at his clinic right as they opened. Which I did. They cleaned it up and patched me back together again and gave more of the "We'll just have to wait and see" about the black nipple and such.

Side note: my PS likes to put in around 150ccs in the TE upon placement, so his patients get a jump start on fills and also so it's less psychologically traumatizing because we don't wake up totally flat. I was very happy to hear that. Then come to find out in surgery that he found my skin to be too thin, so he had to halve his usual amount to 75 ccs. Which means I have tiny baby breasts like a little girl (and it'll take that much longer doing weekly fills). But I'll take it - it makes it all a lot less awful because when I look under the bandages I still have breasts, just tiny rock-hard rounds, but it makes me feel a lot more whole.

I'm certainly not anxious anymore because the surgery is over and mostly I'm too exhausted to think clearly about anything. Also I have WAY more mobility in my shoulders/arms than I thought I would - day 1 was bad, day 2 was better, and now it's day 4 and I can put my own hair up in a ponytail with only tugging stitches.

Also the latest drug cocktail they're trying out has kept me dizzier than sin and still can't walk without help, but can FINALLY eat something. Haven't eaten in 4 days; vomiting. Ate a whole bowl of soup this afternoon and the nurse seemed so happy. So onward and upward.

The drains tug and hurt where they're coiled inside and I can see them making ridges and poking me. But I strip and empty them myself and they are quite manageable.

Falling asleep while typing again. You hang in there upcoming surgery gals. We get through this one day at a time.

My surgery was at 7 am today and by 10:30 am I was awake and chatting with my nurse. It wasn't bad. I have one drain and am being given pain med every 4 hours. I am eating, walking, talking, and so very happy to have this on its way to being behind me. My surgeon took 3 nodes and the preliminary pathology showed they were NEGATIVE! ! She still has to have the full pathology done on the tumor and the nodes to be sure but things are looking up!

Ladies still to come, you've got this!! It wasn't anything I feared it would be. ; )

Some docs like Mupirocin in the nose prior to surgery - it can cut down on certain bacteria in the respiratory system that is introduced in the OR, brought in by, and on, the patient. I am due for surgery on Tuesday, and the hospital I go to needs a MRSA status swab (guess where it is done - the nose!) when the surgery involves anything implants - like a tissue expander, chemo port, or implant.

Thank you for the information SpecialK, it helps me wrap my head around all of this BC stuff. My BS said she'd be going up into my armpit for lymph nodes, that doesn't sound like much fun either... so much to learn!

Great news sensitive! Keeping my fingers crossed for you also!

@Papillon1 - I hope I'm not really scaring you. I hope I'm not scaring anyone here. I'm just being honest and I can stop posting if people don't want to hear it.

It's just that some things the drs warn you about - the possibility of necrosis, for example, but then there's other things no one even mentioned could possibly be a problem - like the nerve blocks both failing so I woke from surgery with zero pain killers and in immediate agony, or that it could take hours for them to get that level of unregulated pain under control, or that it could spike again and a technical error on someone's fault meant a separate time that all my pain meds wore off completely and they weren't authorized to give me more, nothing, nothing at all, until I was moved to a different ward. That was excruciating as well. It's NOT supposed to happen like that. I did spend a lot of time crying and white-knuckled clutching the blankets with gritted teeth and still yelping uncontrollably but I had a dedicated recovery nurse who never left my side and who did everything she could to drag the anesthesia team over repeatedly trying different drugs until something started to take the edge off. That level of pain triggers respiratory distress, as you can imagine. I couldn't breath well, and they were all over that for hours until I stabilized.

No one ever told me that I could sustain nerve damage and lose a hand out of this deal, too. That was a mistake on their part, too. The fact that my blood pressure tanked and stayed tanked for three days is just how it was - also not supposed to happen. But adding in blood products didn't help and pushing more fluid into me fast didn't help, and they just gave up eventually. I was checked on frequently by my 2 teams of drs and the anesthesia people (the bum hand is their responsibility) and all concluded that since I was talking, alert enough, and able to use the bathroom with walking help the super-low BP was not likely to be life-threatening any time soon. So they decided to just let it be and watch it. Like the hematoma: just watch it. Or my bum hand: watch it and wait a few weeks.

So lest it all be doom and gloom, some things were great - my left arm mobility came back after day 1, though right shoulder hurts plenty. I can loosely fix my own hair. I can totter about on my own with something to hang onto because of the dizziness. The latest anti-nausea drug they stacked on all the others has worked well enough that I've finally been able to eat without vomiting all day. My overall swelling has gone down enough that my wedding ring fits again. The drain that apparently clotted and bled out the incision was fixed easily enough after the 4am call to the surgeon.

I'm still on so many drugs that I can't stay awake very long, but I am so glad this is the worst of it all and every day I should start improving. I've got new pjs and a couple button-front summer shirtdresses I've been saving to wear, so there's that to look forward to. My PS who I didn't have a great feeling about turned out to have a really kind bedside manner. And black nipple/skin is just going to do what it's going to do

Hugs for all the recent surgery ladies and guess what my current amusement is? Watching the hospital file its claims against my insurance. So far it's up past $86,000.00 and still counting. Kind of mind-boggling how expensive all this is.

Thanks again for the good wishes. Tomorrow's goal is to walk around some and try and eat more.

I didn't mean you should stop posting greykat. Not at all.

Just makes me nervous - when things aren't so straight forward it reminds me how huge this is. And what can happen.

Positive thinking is the key though, in everything in life. X

I keep going back and realizing that I'm missing a lot of posts, so my apologies if I haven't mentioned or responded to someone (not that my input is so valuable; I just feel bad!) It's sad that there are so many of us that it's so hard to keep up.

Sensitivehrt, great news on pathology! Fingers crossed no further treatment needed.

Midwest, SpecialK had awesome information about SNB overall. As for my experience, I was wheeled down to radiology about an hour prior to my scheduled surgery. Prior to that they had put ice and a lidocaine patch on the nipple for an hour. I received four injections as described by SpecialK and only felt a second or two of burning after the fourth injection.

GreyKat, I don't believe anyone wants you to stop posting here. Where else on earth can you go to vent and share your experience with people who will totally understand? Vent and post away, girl. I'm just so sorry you're having such a miserable experience. It's bad enough our lives are basically turned upside down by this even when there's a good surgical outcome, so adding all the complications on top of it just sucks. We're here for you.

Hoping things went well yesterday for Charlybear1960, besssedby3miracles, and Bonniebleu.

Hi everyone. I wasn't meaning to threaten to flounce off. I just know that when I was worried about going into my surgery, reading about people who were having complications and problems tended to make me much more nervous. I wasn't thinking about that when I posted. But I'm also not the type to pretend it's all balloons and rainbows when it hasn't been.

I'm sorry to everyone I've missed that has had surgery this week or the next few days. I've been so out of it I frequently fall asleep trying to type an update here or at random moments like yesterday I leaned forward in a chair trying to get up and fell asleep instead. I hope everyone's doing well.

Ate soup for breakfast this morning; am already regretting it. Nausea continues. I thought I was hungry enough to keep it down but apparently not.

Right arm still has less mobility than left arm, but left hand is the one that's partially numb and weak. My head hurts. I think we've figured out that the nitro paste is causing most of the major staggering about dizziness and a bit of the headache, the perc is helping with the chest wall pain but making me seriously nauseated, the valium is for the pectoral muscle spasms and boy, I can feel that when it wears off. There's some anti-nausea drug in pills as well and a second anti-nausea patch on my skin. Plus the usual round of antibiotics just in case.

Am feeling crawly itchy phantom pains around the edges of my missing breasts. I expected that, but it's still weird. Black nipple is still black. Hematoma is still large and ugly. Drains are still bleeding red and clots.

Other drugs I had in the hospital but they wouldn't send me home with: lots of fentanyl (worked but didn't last long), dilotted (made me so dizzy I couldn't even distinguish shapes just saw blurs), no morphine because vomiting, torridol (worked but damages kidneys if taken long enough), plus they doubled my oxycodone and the valium while I was there and they could watch me. All trying to harness the pain. They doubled it again as a scrip I could take home because they realized what they'd already prescribed wasn't strong enough given how things had turned out.

Am loving looking at the itemized bill for those three days already - the pharmacy bill alone for all those drugs over 3 days is $16,000.00+

I'm sorry I can't participate like I was and be all encouraging to you next surgery gals. I'm losing my focus again and starting to see double so it's time to quit typing and go rest again. Best of luck to you. I've already got more range of motion back than I thought would be possible in the first week, so I hope that encourages you all.

I was thinking back about how that post-op no-painkiller level 10 screaming pain was the worst pain I've ever felt in my entire life, and to have to endure that repeatedly while they checked wounds and poked around and realized the nerve blocks had failed so it was just me with my chest ripped open on fire - I can't believe I endured that. I can't believe sometimes what we're capable of.

Today's goal is still getting in some rather tippy-dizzy walking. Maybe I'll be strong enough for a shower in a few more days. Hang in there everyone because it gets better!

Angtree - unicorn tears made me spit out my coffee! So glad to see the post op girls all doing well. So sorry Greycat for your your crazy odd scary stuff. I hope you continue to feel better and better each day. I'm at work doing my last day before my 4 weeks off - feels like it's finally real after this long wait. I cut 7" off my hair last night t make things easier these next few weeks with T-rex arms and the weeks after that when it's even shorter (read bald lol). It's weird in a way - almost feel like a weight was lifted and I feel more ready for this adventure. My sweet neighbors and friends are starting what we are calling "the casserole parade" tomorrow, between my surgery and son's graduation it will certainly help. Hoping I don't gain ridiculous amounts of weight over these next few months - will need to try and walk that off for sure.

Sending blessings and happy thoughts to all of you today - thank you for your honesty, strength, weakness and humor. Makes me glad to be a human with you all on this journey:)

Hello All

I'm like raven4mi, don't want to leave anyone out and have been catching up on posts.

greykat, please keep posting, that's what the forum is for, though scary, we need to know how we each experience things. I'm so amazed at your strength to remember us here on the forum and to tell us honestly what is going on You go Girl.

Best to all having upcoming surgeries, and glad to hear that though it may be awful, you guys are progressing.

Angtee15, I was sent home from my original port placement with Oxy.(haven't used it yet, but will if I have to)

I have a stash of every pain pill possible, but I've learned to ask for something stronger than Tylenol 3 just in case. For some reason after any kind of anesthesia it does not work for me.

As for costs, I had chemo first, hit 100k early on due to neulasta. Each of my bi-weekly chemos were 44,000. Just my port placement, biopsy by surgeon and pet scan was close to 50k. Then I had a 6 day hospital stay after my first Adrimiacyn and Cytoxan. That was close to 80k. Sheesh. So glad my insurance paid it all, but by the time it's all over I will be in the catastrophic range for sure.

After that first horrible experience with chemo, I really breezed through the rest of it. (can't believe I'm saying this)

For those waiting on pathology, for once there is a positive to being a later stage (IIIB) . I was scanned to death initially because they thought my cancer had spread to other parts of the body. Grateful, it had not, but I already knew chemo which I had 3 days after my port placement (ouch) was my future, and I already knew about it being in my lymph nodes.

Im saying all of this, so that even if any of you have to face more treatment, don't despair, better to get it and kill it all.

When its already known you have lymph node involvement, just will need to see how much of the cancer the chemo killed. My tumor and swollen lymph node is no longer physically palpable, but surgery will tell the real story. Then on to rads.

Val

gosh, didn't mean to upset the apple cart by saying you were scaring me greykat! Its not you as such, more this whole surgery thing!!!!!! I am absolutely sure I want this, but it doesn't always stop the nerves...

Anyone with young children had surgery recently? How are you coping afterwards? Mine are 3,5 and 7.

Surgery in 10 days and stomach has started churning.

How are you all sleeping after surgery - sat up a bit or flat? I'll be in for 3 or 4 nights so will have the hospital bed for tat long but after?.. I hadn't thought about this until now.. Should I be getting more pillows? A wedge? They look pretty pricey...

The quote for my op was CHF 42,000. Half of that is the hospitality side... I hope I can eat in that case!!!