October 2014 Surgery Sisters

thank you everyone for the encouraging words. I know quite a few of us in my boat, it's not fun to be thrown for another loop. Hummingbird don't worry after what you've been through....drains are nothing I promise!

Had my surgery on the 23rd of Oct.  Had mastectomy, snb and tissue expanders.   Surgery went well and was released two days later.  Two drains which keep draining up and down.. lots of swelling under the arm...no pain from the incision and tissue expanders just feel like they are there... and I know it.  Original biopsy was DCIS stage 0... MRI picked up two additional mm areas in the same breast.   That was the reason for just going through with the MX.  I have seen the PS who checked everything, said it all looks good... but don't know anything else from Breast Surgeon...have an appt next Friday...is there any information that I should have gotten from breast surgeon after surgery??   Did not see her after surgery or prior to release...just hospital surgical team.. is there really no news to tell except that everything went well and I was doing fine after surgery?  Not really sure what news I should have gotten or what to have expected?    Guess I am just with so much thinking time ...thanks for any info or what others have experienced.  

ThinkPositive.

I had two drains that kept draining.  They came out at two weeks.  One was painful.... but I am a wuss.  I had swelling under left arm where 4 nodes were removed and they are tender still today.

I also went home 2 days later.  Both my cancer surgeon and plastic surgeon saw me on Saturday and cancer surgeon saw me on Sunday and signed my release.

Now it is just a waiting game as healing continues.  DON'T DO TOO MUCH.  Lay in bed, rest, shower as well as you can everyday so you feel "normal".  EAT, and have yourself some chocolate!  If your house looks atrocious, just imagine pushing the morphine button in the hospital...it doesn't matter.  It will be clean to your standard another day.

Hi everyone,

Swoobs - so sorry to hear about your change in diagnosis. That really stinks.  It's hard when you walk in with a plan all set in your mind and then have to go back to the drawing board.  

mmb70 - I hear you about the chemo...that is my fear and not really looking forward to it.  Especially with my two young daughters.  The youngest is very impressionable and has an imagination that really gets her into trouble sometimes.  We should start a November chemo page.

Thank you all for your encouraging words and upbeat attitude!  We October gals are tough and I look forward to seeing all of us continue to grow not only in health, but emotionally and spiritually as well.  

I am finally home, trying to stay on top of the pain and not having too much difficulty just lounging in my bed.  My hubby made a smarty-pants comment that there must be something REALLY wrong of me to allow him and others to serve me.  ;-)

Blessings to everyone today and here is to a new month of living!

Akitagirl

Welcome to all the new October surgery sisters. We have quite a large group and therefore a big difference in types of surgery, recovery stories, and of course, surgeon recommendations. It seems every surgeon has a different way of doing things and until we came here, we just assumed that was what everyone else with our diagnosis did too. WARNING: RANT AHEAD

Not too many doctors lay out all the choices but rather stick to what their preference is. Over and over again we hear newcomers say how they wished they'd known about _____ before their surgery. We are often too shell shocked at the moment to even know that there ARE choices. It really gets even more complicated if you are having reconstruction. So many choices. Does a doctor prefer a certain kind of implant because the manufacturer's representative has taken him to play golf? What if you decide you want something different?

I think it's great that more and more women are realizing that we don't have to please our doctors. For a hundred years they have been put on pedestals and women, especially, were to be patted on the head and sent home to cook dinner...in heels and pearls. ("Don't you worry your pretty little head about it. I'll take care of everything.) We are still afraid of them too often and worry they will somehow give us substandard treatment if we dare to make them mad. Fortunately things are beginning to change and there are physicians out there who want to work WITH us. They don't become annoyed with our questions and have no hesitation telling us about ALL the options, not just the one they like best. We women are growing backbones and are feeling more confident that we can ask a question (maybe LOTS of questions) or even disagree without fear of repercussion.

Remember: doctors work for us. We pay them for their opinions but are we obliged to follow every tiny bit of it? What are we supposed to think when we read story after story from other women with our same diagnosis or treatment whose doctors seemed to do everything differently than ours? My PS says I can shower if I protect my drains and incisions from getting wet, yours says not until your drains are out in one or two weeks, someone else's doc says go right ahead and shower without covering anything including drains. My doc says bras are not needed, yours says you have to be in tight compression bandages 24/7 for the next month, and someone else's doc says only sports bras, but not at night. My PS says no underwires and only stretchy bands & cups but your PS says only underwires with formed cups and someone else's PS says only front zip sports bras with removable padding. How can they all be right? If it TRULY mattered, wouldn't one way stand out and lead to better success?

Sometimes it's a difference in treatment for your cancer. My doc says nipples have to go with DCIS because the ducts it's growing in lead to the nipple and it increases the chance of recurrence. Your doc says there is no reason why you can't have nipple sparing surgery with DCIS. Mine said I was a good candidate for Direct to Implant because my breasts were large and there was plenty of skin to work with. Your doc says Direct to Implant is not for women with large breasts. Your MO says no chemo if you have only one positive node and the other MO says absolutely chemo even if it's only micromets. With the same diagnosis, one doc says you don't need Tamoxifen but the other doc insists on it.

Doctors! PLEASE get together and come up with an accepted protocol. You are driving us CRAZY.

I saw my PS this morning and she was all about removing the necrotic nipple before infection sets in, so debridement surgery is scheduled for next Wednesday morning. One hour outpatient at a new hospital. The Silvadene has eliminated my navy blue nipple and revealed a lovely black color. The color of death? Actually that blue suited me better. I am a summer.

I need to do pre op stuff all over again, another EKG, more blood work, another interview (this time I will be obstinate that I do not want morphine. I asked for an alternative the last time but the anesthetist who interviewed me right before surgery said "we like to use it" and I didn't remember why not so I agreed I was not allergic to it. What it does to me is cause projectile vomiting the minute I take a sip of something and move a muscle. No nausea, no warning. Just a scene from The Exorcist, was it? Of course there was no drug ordered to combat this so we had to wait for a resident to order, etc. unnecessary! They can give me something else!).

I found I felt sad this afternoon. Fear? More risk? More delay? A new set of drains? Back to feeling less than optimal? Or just because?

I was able to discuss with the PS the plan going forward. It helps to have a possible time line. I have a lot of plans and projects and ideas, work to do. She will have to deflate me, which means it is hard to know how much I will need to be inflated. My winter travel plans are in flux.

Thank you, October sisters. I am grateful to have a forum to work out my feelings. It is all very complicated and uncertain, as each of you know. Take care of yourselves, each of you.

Sharpei

I know I have posted this info here before, but for the benefit of the newcomers, here's a fool-proof way to prevent post operative nausea & vomiting. (PONV) Remember though that this is what works for me and everyone is different.

Copied from my post on the Exchange thread:

After extensive research on my part as well as two anesthesiologists who were willing to go the extra mile to research and put together a plan, I have cracked the code on a nausea-free recovery. What a blessing! Post op nausea & vomiting (PONV) has plagued me my whole life and is the thing I most fear about surgeries. I can deal with pain if I'm not ready to throw up for three solid days.

1. Before surgery, get a transdermal scopolamine patch. It goes behind your ear. By itself it might not be enough to prevent nausea after surgery but in conjunction with the other things, it's essential to the total plan.

2. Take an Emend capsule before surgery. It might make you feel a little light headed for a few minutes (did twice for me but not this last time) when it first takes effect, but that quickly straightens out. (For those who will be getting chemo, Emend is being prescribed more and more to eliminate nausea.)

3. Make sure to request TIVA - Total IV Anesthesia. It is the most import part of the plan. No gasses are used. Most general anesthesia includes several different gasses, but they are well known to cause PONV. TIVA drugs have such a short half-life, they wear off quickly, reduce post-operative nausea and vomiting (PONV), allowing shorter recovery room times, and an overall smoother and better experience (as compared to inhalation anesthetics).  

4. Ask your surgeon to inject Exparel into your incisions at the end of surgery. It foams up and bathes the area in blessed pain relief for up to 96 hours and reduces the need for narcotics, which are known to cause nausea in many patients.

5. Get IV Zofran at the end of surgery and during your hospital stay on regular intervals. It does a good job of counteracting nausea. You can get tablets as well. Decadron is another drug that can help nausea.

These 5 steps are the key to success. Some hospitals use gas for general anesthesia because it is cheaper for them. Too bad...get TIVA instead and make sure your anesthesiologist is familiar with it. I will absolutely NEVER have another surgery without it. Not only did I wake up in recovery after the last two surgeries, which I never did before, but I was completely alert and didn't feel groggy at all. The nurse and I were chatting and cracking jokes. Normally I would be desperately sick and feeling drugged up for days. Another massive benefit of TIVA is that it has a short half-life, meaning it leaves your body pretty fast. I used to feel odd for 3 weeks after a surgery. Not anymore. 

Some insurance companies say Exparel is too expensive. Balderdash! It costs about $300 for one vial. I would gladly pay out of pocket twice that much to get Exparel. It's just that good.

Here's a link to learn more about TIVA http://www.realself.com/article/tiva-total-iv-anesthesia-general-anesthesia-safer

Here's a brand new one about Exparel and how it reduces the need for opiate pain relief by 45%. http://www.heraldonline.com/2014/10/27/6462524/new-study-correlates-use-of-exparel.html?sp=/100/773/385/

For more on Emend http://www.emend.com/aprepitant/emend/consumer/index.xhtml

Transdermal Scopolomine Patch http://www.transdermscop.com/prescribing-information.htm

We love to laugh here. Your sense of humor is certainly appreciated, Sharpei.

Sandra you are wise!

Happy Halloween everybody 

For those with young children, or who need a chuckle, this the series of discussions I had with my son, who is 3 1/2.  As background, he has always been particularly fixated on how things fit together and building things.  He has also used the term, "boobie," for all of his young life.  I chose not to use the word "cancer" and after the questions he had, I was glad to have omitted it.

1) Introduction.

Me:  Mommy has a boo-boo in her boobie and I have to go to the hospital so they can take it off.  Daddy is going to stay with me, and we will be home the next day.

L:  Take off your boobie?  Why?

Me:  Because it has a boo-boo.

I thought this would be the end of the discussion, but it was just the beginning.

2)  Home from the hospital.

L:  The doctor take off your boobie?

Me:  Yes.

L:  Where it is?

 (This caught me off guard, and I quickly thought, "how can I explain pathology department?")  

Me:  They are looking at it to see if they can fix it.  Then they are making me a new one.

3) A week later:

L:   The doctor makes you a new boobie?

Me:  Yes.

L:  How he do that?

(Damn, he did it to me again, how do I answer this?)  

Me:  He uses a balloon.

L:  A BALLOON?

Me:  Yes.

L:  What color is it?  Is it blue?

Me:  You want me to have a blue boobie?

L:  Yes.

4)  A few days later.

L:  You got a balloon to make a new boobie?

Me:  Yes.

L:  How it works?

 (This seems like too much info for him at this point, but he is still asking questions so I want to keep answering until he is comfortable.)

Me: The doctor puts some water into it to fill it up.

L:  How he do that?

(Seriously????)

Me:  He uses a little tube to put the water in.

5)  Two days ago, talking to his nanny.  I just happened to overhear this.

L:  Mommy got a boo-boo in her boobie and the doctor take it off.  He put a balloon in to make a new one.

I hope he doesn't discuss this with his nursery school!  

Surgery over...  Lumpectomy
and SNBP yesterday. Anticipate clear margins (got the "impression" she
went back for a second pass on one area...), 5 nodes removed (Sentinel
node was the comment, do I interpret this as in the layer closest to the
tumor?). Nodes appeared "normal" so just the 5. Estimate of tumor
size 1.1 cm (+/- 0.1 cm). Tissue surrounding the tumor looked good...
think she said fleshy and pink.

Asked
her to share her thoughts on Stage... Last week she thought "Stage
1".... now she she says "Stage 1 or 2". Googled the differences between
the stages... still not sure if ~ 1cm what would kick it over to Stage
2. 

Only thing not on my "Have on hand" list was benadryl. Got a case of the "blue dye itch"....

Another interesting side note. I carried on so much before surgery (to anyone who would listen) about the fear of nausea and how every pain med I have ever taken has made me sick as a dog that they actually put an allergy notice on me. I asked them about the ear patch but he talked me out of it (can't remember what the reasons were now) but assured me he'd make sure I wasn't sick. Whatever they did worked and they sent me home with zofran and norco and I haven't felt sick once. I did almost pass out yesterday when the drains came out. Right side I didn't feel a thing, left was weird but then she launched into talk about fluid build up and my ears started ringing and I must have turned white as a ghost cuz hubby took one look at me and they laid me down. Anyway I'm rambling but I finally feel half human today, 10 days post op. Going to try for a long shower and good hair wash and something other than pjs!

Happy November ladies. Thank you for supporting me and each other, it is so important! We can totally do this!!

The marsupial drain holder

Ocean, no matter what kind of implants we get and when we get them, there is swelling...sometimes a lot. Sometimes it's more on one side than the other. It goes away on its own time...and don't expect both sides to follow the same pattern there either. Perfectly normal. I like your new marsupial pockets. Goodness, you could fit a water bottle and your lunch in there too.

Swoobs, here's my own 4 week post op vs. using pecs report. Yep, pill bottles are not "do-able" for awhile. Neither are some twist tops of Diet Pepsi bottles. Other frustrations - opening/closing sticky sliding glass doors, reaching up and into a cabinet to put away a small stack of dinner plates, back and forth repetitive movement involved while cleaning a counter, vacuuming, pushing open a very heavy door. Pecs are no match for these formidable opponents. All those zips, zaps, and zots are normal too as the nerves attempt to heal.

Four, that's a precious story and you are to be commended for giving your child only what he asks for and only as much info as he can process. It proves if he needs more, he will ask for more. You also get an award for quick thinking!

Maggie, the sentinel node isn't necessarily the one closest to the tumor. There are LOTS of lymph nodes scattered all over your chest and underarms and any one of them could be the first lymph node your particular tumor connects to. Docs used to take out every single one they could find to make sure they got the sentinel node. Now that they have these methods of identifying it so they only take a few nodes, women are not developing lymphedema as often.