October 2014 Surgery Sisters

Well here is an unfortunate (but getting better) follow up:

I had a proph BMX with expanders on Oct. 6. Recovery was going swimmingly - walking a mile or two easily a few days atfer surgery, plenty of energy, minimal pain meds.

Had two drains pulled at a week. At the two-week mark the remaining two were ready to come out. Literally, I was skipping out of the PS office (and of course arrogantly put up a facebook picture with my arms held high proclaiming how free I felt).

It was short lived. About three hours later, I was shaking uncontrollably and spiking a fever of 102 that would not go down no matter how much pain reliever I took. Went to the emergency room after a few hours. They got fever down with IV antibiotics. At noon next day, PS syringed out bout 60 ccs of pink cloudy fluid and said we should probably go back in to clean things out.

By 10 pm that night, I was in surgery. She said she "powerwashed my insides," replaced the expander, put two new drains in a different spot. Diagnosis: Staph infection, which she says she has rarely seen. So no one really knows "why" this happened.

I have to believe it had something to do with the drain tubes. While the tube was in, it was removing some of the bad stuff. As soon as it came out, disaster.

So...it's been a week since surgery no. 2 . Lots of pain at first but not so bad now. I am on Cipro and Doxycycline and will be for a few weeks. I am filled on that side to 500CC (as big as we were going to go) so PS won't have to mess with it much. One drain still in and will be for probably another week. I actually don't care if it is many weeks or if I have to wait 6 months for perm implants AS LONG AS IT DOES NOT HAPPEN AGAIN.

Biggest bummer now is I am very weak, tired and anemic. Back-to-back surgeries and an infection took WAAAAAY more out of me than the BMX!

Just wanted to share my story. Anyone else been there? I am now convinced hospitals are secret petri dishes!

Greetings! Seeing my name on the list makes it official!

Question... On 10/31 going into the unknown.... Lump removal and Sentinel Node Biopsy - path done while I am on the table - axillary nodes removed if positive - Anyone in this group have a similar experience?  From 2 weeks ago - Core needle biopsy path report IDC (HER2+ (3+)), ~ 1.3 cm.  Estimated Stage 1, Grade 2.

KayG, I know exactly how you feel, having been there myself. My infection was "acquired" in the OR during my long 8.5 hr BMX with permanent implants. A few hours after moving to my room from recovery, my fever started and things went downhill from there even though I had been on IV antibiotics the whole time. Three days and three changes of IV antibiotics later, my surgeon moved to the antibiotic of last resort for my gram positive staph infection - Vancomycin. It slowed and finally stopped the infection but it was too late to save parts of three muscles and the skin & soft tissue on my left side. I went back into surgery at 14 days to have the dead tissue removed. There was no longer enough skin to cover the left implant so it had to go as well. I had drains for a total of 5 very long weeks but no problems after they came out nor in any subsequent surgery. My PS waits until you are putting out less than 30 cc's in 24 hours for two consecutive days which is conservative from what I've read other PS's say. There is a danger of infection the longer they are left in although your 2 weeks is about average from what I've read here on BCO. Your infection had to have been brewing already when your last drains were removed. You don't go from totally fine to 102 and shaking in 3 hrs otherwise. Certainly wasn't anything you did wrong. These things just happen sometimes. Mine was from unsterile instruments or something or more likely someone else in the OR.

Like you, I was pretty wiped out after two surgeries. Even though I was given two units of blood, I was still weak as a kitten and anemic. It's taken over a year to beat the anemia but last week the hematologist/oncologist said I finally had average numbers. Hang in there, KayG. The worst is over and even though your implants seem too far in the future now, time will go quickly and this will all be a unpleasant memory.  

Unfortunately, my infection did a lot of damage which I am still dealing with today, 14 months later. I've had 5 surgeries and will have #6 as soon as I heal from the Oct. 3rd one. None of these surgeries are cosmetic...we are dealing with anatomical issues that have resisted the usual path to reconstruction success. This last surgery seems to have almost gotten us there.

Fingers crossed, one more and we'll BOTH be finished.

Just found out my nodes are clear but I went from DCIS to invasive carcinoma ....no stage or grades yet I'll find that out on the 7th

Anybody else ever gone in with DCIS  to come out with IDC???

Feeling bummed:(

Surgery is in question.  No approval for the nuclear procedure to identify sentinel nodes tomorrow.I'm wondering if I really want to be captured by "the system"... Too many "it's not my responsibility" coming from the hospital, the insurance, the surgeon's office.... WTF???

HI everyone,

Greetings from my hospital bed.  Surgery went well yesterday with the exception of two items:  They could not put an epidural in for post-op pain control.  Also, my sentinel node came back positive.  The BS took another 3 nodes, but kept to her promise of NO axillary dissection.  We will receive final pathology on Friday and then re-discuss our options. 

Recovery  - not so fabulous.  My left side has a hematoma, and I almost had to go back in to the O.R. to fix it.  Throughout the day, it has definitely been reducing in size.  Whew!  Because of this, I didn't get to go home today (day1 postop).  However the BS came and looked at everything this evening, and unless something crazy happens, I will be on my way home tomorrow!!! 

I hope everyone is doing well.

All my best,

Akitagirl 

AkitaGirl, glad to hear you made it through surgery ok. I hope your pain is manageable without the epidural. Prayers that your hematoma keeps getting smaller so that you can be back home tomorrow. 

Hi MaggieCat,

My BS wanted to do a full axillary node dissection, if the sentinel node was positive.  I did not agree to having that done.  Instead, if it came  back showing infiltration, then we can sit down and discuss our next plan of action.  I am considering localized radiation.  With that combined with chemo, I hope that we can take care of all potential metastases. 

You should only consent to what you feel comfortable with!

Akitagirl

Sorry to be reading bad news for some of you.   KayG, I'm so sorry.  I had gotten a post op infection on my first lumpectomy, with seroma too.  I had randomly heard of another patient having gotten an infection at my hospital a week before so we wondered if they had a bug in the OR.  Hospitals totally are germ factories, you are right.  I hope this is just an unpleasant bump in your journey that will be put behind you.  

Swoobs, upstaging happens when they get the tissue out.  It sucks, but the initial biopsy is what they could get into a needle into and if the tumor had part which was DCIS and part which was IDC, they may have just hit the less aggressive end.  This was part of why I was so anxious about the mastectomy, since I knew there were a lot of pieces of information that would be filled in.   The good news is you already had it removed from your body so its gone.   Hopefully it will not change much of what you were anticipating going forward either.  

Oceansky, you got upstaged too on size.  Breast cancer is a stealth little monster and its nerve-wracking how subtle it can be on imaging.  I do not have a final answer on chemo myself and have been trying to keep expectations in check.  If it needs to be done, it needs to be done.  You are not alone!  Hoping your reconstruction goes smoothly and is a pleasant surprise for you.

Akitagirl, you've already had unpleasant surprises and I'm sorry about the lymph node.   I can completely understand your not wanting a total lymph node dissection.  Hang in there, you are in good hands.  Hope your little girls can keep your mind on what matters.

Sandra, great info as usual.

My update is merely a second fill of my TE today, which I dread a bit, but know is just another step towards the future.   The end of October is always a kind of bummer as the colors will soon be gone from the trees and the early fall crisp sunny days will fade into dark cold commutes.  Baseball is over too.  The marathon is this Sunday in New York and the forecast is in the mid 40's.  Brrrr!!!

I hope Colbelli and Su-CQ51 do ok today. Thinking of them.

MaggieCat, I know this is a day of anxiety for you as you count down the hours until your surgery tomorrow. Hope you can find some peace.

Ocenasky I had silicone rounds put in they look good so far week 3 my left still kinda not in place it stuck in my angry pec muscle but every day it shifts a bit. My ps is against gummies...so my alloderm silicone better look great after he talked me out of gummies!

Fourminor never knew the term upstaging before....I didn't dream there could be any treatment after surgery I was convinced it was DCIS. Feeling very lost, and overwhelmed.... I will not know grade/stage or plan for future until the 7th because the doc on holidays...

Swoobs, sorry to hear your news - clear nodes is a good sign, though. My original diagnosis was IDC (plus some DCIS), and after the BMX I had a clear pathology and don't need rads or chemo, only hormone treatment. Hoping you'll be in the same boat. I actually chose to go the mastectomy route instead of having a second lumpectomy in order to avoid radiation - that was essentially the choice I was given by my oncologist (after lumpectomy, my nodes were clear, and my margins were clear but too close for no further treatment).  

KayG, yikes. I'm so sorry to hear about the complications. Who knew we would ever talk about things like having our insides "powerwashed"?! Hope it's a better process for you from here on out.

Hello,  I just wanted to say hello and wish everyone the best! It is not especially comfortable to type much and I hate using my cell for lengthy posts. I had my BMX and SNB on 10/24 as scheduled and was discharged on Sunday morning.  Going thru so many similar things as you all--sore arm pits, ballon-feeling sides,drains that SUCK but got two out today, hooray! Woke up to no expanders put in due to blood flow issues (sad). Forced myself to look at everything both in the hospital and at home in the mirror since being home. Pretty gruesome. But it will get better in time, and someday reconstruction will be in my future too. Lymph nodes were clear, so great news. Went into this expecting no chemo or rads, just BMX.(omg--"just BMX") At onc appointment today he casually mentioned the word "chemo" and keeping an eye on one side, and I thought that was it.  Got home and later received two phone calls that I had an "urgent" referral to a medical onc to discuss chemo options. Huh? So, guess I have an appointment tomorrow morning at 8:30 to discuss.  Oh well, if I've learned one thing from this whole experience, it's a whirlwind, ever-changing roller coaster of a ride.  I look forward to getting to know each of you and plan to study up over the next few days.  Wishing you all healing hugs.

Here we are at month's end. I am shocked at the number of us, the variations in our cancers, our treatments, our surgeries, our problems. I have tremendous compassion for the members of this community. So much uncertainty! I am so sorry.

I am four weeks from my surgery and will visit the PS this morning. Otherwise my cancer is gone, my treatments over. The medical oncologist and I met this week and we agreed the side effects for me of aromatase inhibitors are worse than the benefits. My risk for more cancer is about 1% a year. Ten per cent over ten years. I am 68 and although I am in otherwise good health, I have never known anyone in my family to be this old. Long life is not in our genes (no Breast cancer, but lots of mental illness and addiction, many smokers, however. I have escaped these, fortunately).

Since I now only have one Breast, is my risk half of one per cent? Funny the questions which arise AFTER seeing the professional.

I will be closely and well monitored, of course. Another DCIS? We know how to care for that.

Sharpei is doing better on the Silvadene. Sloughing, gently. "Declaring herself". The necrotic nipple is no longer navy blue but black (guessing the Silvadene sloughed off the traces of blue dye used to trace the sentinel node). It is about 1" x 1 1/2", a beautiful diamond shape, surrounded by fresh pink tissue. Hopefully the PS will be able cut it out and sew the edges together. I may need to be deflated a bit. Please let this be her conclusion today.

Will I be sad to see the nipple go? 

We go to Florida for the winter, which means I need to be done with fills by then. It looks as if it will be tight. I am in the midst of renovating our new condo, a project which has stalled with my distractions. The thought of a freezing cold, gray winter in Rhode Island does not charm me. Did I mention that I have an old skiing injury which keeps me housebound when it is icy out. This is not good for my mental health.

So here is hoping I get a date this morning for the OR for debridement. But I do understand how slowly but ultimately elegantly skin heals. My skin has been struggling for four weeks now but it is making progress, very slow, daily progress. The radiation I received ten years ago, although not visible, hurt those tissues.

I have been fortunate to have wonderful Visiting Nurses. My Breast surgeon pooh poohed them but the PS suggested them and I was signed up before I left the hospital. They have been wonderful educators. They are only coming weekly now but I always have issues and questions. When my drains leaked from the holes, not the part I felt responsible for, they helped clean me up and relieve my anxiety. When my drain stopped with a giant clog, they taught me aggressive milking. When I had terrible tape burns and a rash from the antibiotic, they helped me. They are providing me with my dressings and wound care supplies. (My dear husband is caring but he freaks out on messy particulars). 

Patience. This has been a tough lesson in patience. I am still careful about lifting, but I move around, take walks on these beautiful fall days, go out a little bit. I can suddenly get very tired, however, and know I must go home NOW.

I finally was able to shower last week, too. We went to Home Depot and bought a handheld shower for $60. What a huge help! Sharpei was too fragile for a regular shower but finally I could wash my hair and bathe properly. Why didn't we know we could do this before? We just didn't.

What a learning curve this all has been. I hope I find out what debridement is all about soon. I hope it works for me.

Take care, my fellow sisters on our pink bus! Take care. Things do not stay the same. Hope for improvement and healing!

Sharpei