March 2014 Surgery

fayth

My countdown is on.

 I am starting to have anxiety, not so much for the surgery, but for the Sentinal Node biopsy injection. My breast is so tender, I can barely touch it or wear a bra. This was my symptom that sent me in to the Doctor in the first place. It is almost a mastitis like feeling. So,... the thought of having a few needles full of dye injected into it is sending me into panic mode.  My BS told me it would sting, but given my pain situation as it is, I don't think she understands.  My Biopsy was the same. One of the 'punches', felt like there was absolutely no freezing in that spot. I jumped up off the table with the scope still in, and the pain did not go away for 10-15 minutes. I am wondering if any of you have heard of some sort of pain management prior to the injection? I read somewhere about holding an ice pack on the breast to numb it? 

I know I can do this and I really am not a wimp. I just think I have post traumatic stress from my biopsy and the pain I have been living with is messing with my head.

VintageGal1111

Hi fayth

 I had a lot of pain in my breast, the tumor hurt as well as other shooting pains through out. I was very sensitive to anything touching it, ultra sound was painful.

I had the radio active dye injected about 90 minutes before I went in for a lumpectomy. I won't lie, it hurt. Though many women say it wasn't much of anything. I recall the nurse put a numbing agent on it but I don't think it did much. I would think an ice pack would be a help. 

When is your surgery? I go in for BMX Thursday. All the best to you!

Catoklyzmk

Hey Ladies

Just wanted to join this group as I too am having surgery this month but I am not on here that often.  Hoping I can join you all in getting through this

I am having a bilateral mastectomy March 18/14....no reconstruction.

I have many questions but one I am most curious about is sleeping after surgery?  I cannot sleep on my back no how!  I am a belly sleeper and I anticipate being miserable?  How uncomfortable are you after surgery and how is the pain?

Cat

VintageGal1111

Hi Cat

 I am new here too, BMX will be Thursday 13th.

I m a belly/side sleeper & wonder how I will do too. I don't sleep that great as it is & have never been one to be able to fall asleep sitting up, in a recliner or partially upright. (like hubby can!) I bought two extra pillows, so will attempt to be propped up with 4 of them behind my back, head & under arms.

Take care~

sandra4611

Fayth,

Ask your doctor to order EMLA cream for the procedure. They put it on the areola (the injections go there, not in the nipple itself) an hour or more before the radiologist starts and it's really supposed to help. I did not have it and wish I had. The good news is that the Texas-sized bee sting lasts only about 5 seconds, especially if the radiologist massages it.

Do you know if you will get the blue dye or radioisotopes? The isotopes have to be put in at least two hours before your mastectomy. That's what I had. The dye isn't supposed to be painful, but I have no personal experience with it. The reason why the radioisotopes sting is because it's a different Ph than your body. But remember, it's over quickly and it's worth the momentary discomfort so the surgeon can locate the right lymph nodes. Before this procedure was invented, surgeons had to take lots of lymph nodes, causing lots of pain in the healing process and increasing your risk of developing lymphedema.

It's a good thing. Keep that in mind and it will be fine. Plus, you may be one of those who doesn't feel a thing!  

fayth

VintageGirl~ I am having left mastectomy with SNB on Friday. Can't come soon enough. Will be thinking of you on Thursday

I think that I will bring an ice pack to freeze the area. I have nothing to lose. 

Thinking of everyone,... especially those in recovery mode.

SpecialK

fayth - you might also ask if they can start your IV prior to the injections and give you something to help you relax a bit.

vintage - I am a side sleeper also - I slept with a lot of soft pillows behind me - in my own bed, not in a recliner.  I put pillows alongside me too so I would not inadvertently roll over. 

vintage and cato - pain meds or sleep aids may help you sleep better in this unnatural position in the short term.

KLJ

Julie, Keep the good stories coming! It really helps to hear them. How was your experience with the injections for the SNB? I did all of my pre-op today and asked about the cream and was basically given no answer. Will be calling the surgeons office tomorrow and seeing the PS for our final pre-op visit. The hospital has me down as having a skin sparing surgery and he specifically told me he would not do skin/nipple sparing. The concerns are piling up inside of me and I am getting nervous!

linda505

Positive thoughts for tir1128 for today!! And continued good recovery for all those who have finished this month!

aviva5675

For me the stinging of the shots lasted about 10 seconds each. Hurt but was over pretty fast. They have you raise your arm above your head and the nurse stood there and had me clench her hand, that helped too...

I was a belly sleeper also. Cant recommend enough having many pillows of various sizes and softness to use after surgery.  I had 2 behind me, one each under an arm, and for awhile one under my legs, like they had me do at hospital. Because you use drugs for a bit, that just helps you sleep.  Try something like zzzquil also. But you just get used to it cause you have no choice! Slowly after the bmx I was able to shift a bit to the side. As I healed that became easier and easier. I definitely, and still, clutch a pillow to me tho when I side sleep.  In the beginning tucking it between the te was good (on my side), as the 'top' one didnt smush the 'bottom' one.  Now after my exchange I can sleep on my stomach but notice that I really dont anymore--Im usually on my side.  The first few week/s after your big surgery you will be leaning on your back, no way around it, but it does get better!

stfne

Fayth,

I agree with Sandra that you need  to call the hospital and Ask for the EMLA cream and an anti anxiety medication for the morning of the surgery. The nurse actually asked me if I  had used the cream. No  I had not because it was never offered to me and I had only heard of it on this board. i wish inhad  asked but I got through the radioactive die and it stopped Hurting before I ever sat up. Still, if we don't have to be in pain then why should we. When I showed up at the hospital in the morning the first question on the questionaire they gave me was, "are you taking anything for Anxiety? Again my answer was no. I was't offered any.  We HAVE to speak up!!! i hate to sound winny or be a bother to any one but I guess that is one way I am growing in this experience.at least I better be since there will be more surgeries to follow.

Back Sleeping bites! I have found that a travel neck pillow helped in  the hospital while sleeping in the chair.   At home i have been better sleeping on my back and have been able to use enough pillows to almost feel like I am sleeping on my side.

I tried cutting all of my meds in half yesterday so that I would better be able to comprehend wht wa going on when I met the doctor. The meeting went well but I was in a TON of pain laye last night. My husband has me back on the requested schedule od oxicodone and lorazapan. In my job as  a state social worke i see too many clints addicted to pain meds and this concerns me but at the same time I feel that the pain I feel just from looking i the mirror warrenrs some

Drugs:)

I wanted to also mention that  when Infirst woke up and looked down at where my much too large breasts had been I was greeted with a gigantic stomach!!!! Thankfully much od that was swelling og some sort. whew! Looking forward to

Losing the belly and back fat and haning more typical size breasts. Gonna be a

Long process for me I think!

melisden

It's been 1 week and 2 days now.  I THINK I woke up with a little less swelling especially on my left (non-cancer) side.  The did SNB on both, took out 2 on cancer side and 1 on the other.  I can see quite a bit more swelling by my armpit on the right side and my arm seems more effected also.  I can feel it as I type.  But from what I understand, it is really rare to have lymphedema after a SNB right?  How about the numbness in the arm pit?

I keep saying it's only been a little over a week and things will return to "normal" at some point.  There are many women who lead happy, healthy lives after bilateral mastectomies.  It's just a lot to get used to, isn't it?

I noticed I have to try to hold my shoulders back because you get into the habit of using your T-Rex arms (I read someone else using this term and I like it) and before you know it you end up hunching forward a bit.  2nd f/u with p/s on Friday with additional fill.  1st f/u with breast surgeon next week.  These expanders are something else - but I understand that once the implants come in things get much better very quickly.

Sending lots of healing energy out to everyone!

Catoklyzmk

Thanks for all your answers ladies.  It truly helps to know that I am not alone out there.

Can anyone tell me if problems with Lymphedema is common and any thoughts on prevention?

Cat

sandra4611

Catoklyzmk,

Lymphedema is a possibility after any kind of surgery that affects any of the lymph nodes all over your body. There is a thread on this forum that is specifically for lymphedema so you will get the latest info there.

Melisden,

You are right, the incidence of lymphedema after sentinel node biopsy is low, but can happen. I have numbness in one armpit but not the other. Four lymph nodes were taken on each side. Sounds like you are making great progress. I believe most women see a big improvement at the three week mark so you are right on track.

Stfne,

You are so right about us becoming our own advocate. Isn't it aggravating to find out about something that could have helped you but you didn't know about it? If I had known that pectoral muscle spasms after surgery could happen, I would have asked my doctor to order a muscle relaxant in case I needed it. It would have saved me one heck of a night of pain. With the sentinal node biopsy (SNB) I wish I had known I could benefit from EMLA cream. Some say EMLA is no big deal because the dye isn't painful. What about if you get the radioisotopes instead? They sting! Wouldn't it be smart for women to ask their doctors which  they will get so they can ask for EMLA if they want it?  I'm like you. If I could have had something to avoid the pain, even though it lasted only 5 seconds, I would have welcomed it. 

My greatest hope is that someday women get all the info (printed would be best) about every step of this journey. Some people say it would just scare a woman. Come on, it's not the 1950's anymore. Cancer IS scary! But we can make our own decisions about how much we want to know. If you don't want to know, don't read it. If you only want to know what's going on one step at a time, you can do that too. If you want to read everything and some parts of it scares you, then you should share those concerns with your doctor and let him reassure you. I made a list of things I'd read about that could happen. Scary things. He acknowledged that none would probably happen, but even if I had every single one of the complications, he knew what to do and would help me. That's what I needed to know and my anxiety level dropped about 10 notches. But if you don't know the possibilities, you won't have the opportunity to get that reassurance and if you do have a complication, you are REALLY scared then.

sandra4611

Vintaggal1111, it's your turn finally. I know you are full of anxiety but it will be over soon. Please know that we will be there with you, at least in spirit. What time do you want us to pick you up in the Pink Party Bus? I think I'll bring a boom box with lots of happy music so we can dance and sing all the way to the hospital. Get back to us after your double mastectomy when you are able.

fayth

I think that I will call my surgeon to see if I can take some Ativan the morning of. My SNB is at 8:30am, then my surgery is at 1:30. If I take a T3, it will bother my empty stomach. Perhaps, Adivan, Emla cream, and an ice pack will work!! I will also ask them if they can give me something if they hook me up to IV early. I honestly think it will be fine, I am just remembering my Biopsy that went so wrong. I think this waiting is killing me,....too much to think about,... must go to bed!!

Sweet Dreams all.

Thinking of you Vintagegal1111

Juliecc

i had my surgery 2 days ago and I'm sill feeling awesome!  I had the radioactive stuff injected the day before surgery.  It was just one shot of novocaine then the shot of the radioactive stuff.  It only burned for about 5 seconds.  That's it!  I was then told to massage that area for 5 minutes to help it move.  Apparently, in the OR, they injected the blue dye.  My urine was blue for 2 days!

My pain isn't bad.  Just in my armpits a little during the day, and a heaviness across my chest while sleeping.  I feel pain when I take a deep breath.  I have 4 drains but Idon't have any pain from those.  I think I'll just take the valium at bedtime brcause they make me loopy.

We did look at the incisions under the ace bandages.  There was an area that looked white with a black center.  We went in and we were told everything looked good.  She said not to wear the ace bandage anymore so I just wear the camisole with the pockets velcroed inside.  I took a shower today and washed my hair!

Everything is great.  Good luck ladies!  I hope you have it easy like I did.

KLJ

Julie! Once again great news! I am going to call my surgeon today to find out how they handle the injection of the dye. I want EASY just like you had! That is really the only thing I am stressing about. I met with my plastic surgeon today and that went great. Every concern that I had was addressed and the best thing was I didn't need to "tell" him what I wanted. I asked him what he had planned for me and everything was exactly what I wanted. I left there feeling great!

I am so happy that everything is going so well for you Julie! Keep it up!

Juliecc

Thanks KLJ.  The hard part is trying to do things that I should ask for help for.  I'm using my T-rex arms as much as possible and moving slowly and deliberately like a sloth!  I haven't needed help going to the bathroom but my mom and boyfriend have been milking and measuring my drains and handing me meds.  Childproof caps are so diffuicult.  I also have a couple of sticky doors I open by myself.  My sister in law washed my hair in he shower yesterday and I did the rest of the shower myself.  Apparently the surgeon says it's ok to get the incisions and drain sites wet.

For the drains, I have 2 on each side.  Each side has a light output bulb and a higher output bulb.  They are draining less and less each day.

I still have the ache across my chest and pain when I take a deep breath.  I'm not quite ready to give up the tylenol with codeine.

I hope all of you are doing well.  The waiting for the surgery was the hard part.

I've had 7 bouquets of flowers sent by friends, relatives,and co-workers.  It looks like a florist shop in here!   Last week, 15 of my friends got together and sent me a box with a robe, blanket, PJs, slippers, a $100 Amazon gift card, and $500 Visa gift card.   I'm so lucky to have so many caring people in my life

sandra4611

Those of you stressing about the SNB - it's not worth worrying about! First of all, you may get the dye instead of the radioisotopes. Or if you do get the radioisotopes, you may not have any discomfort. Some women on this forum said they don't know what the fuss is about. Second, if you do feel a sting, it's over so quickly you'll spend more time getting off the table!  Think of it like you do when you have to get blood drawn. Nobody likes to feel it but you do it because it will help the doctor find out how he can help you. The sentinel node biopsy is the same thing, your doctor needs to find out which lymph nodes are most likely to show if your cancer has progressed. Your treatment depends on the outcome so it is a good thing! You WANT this, even if there is a momentary sting. Isn't it worth it? If you had to have a blood test and someone told you a little cream would reduce the feeling of the stick, would you want it? Probably. But if you didn't have it, would you stress out about the blood draw? Probably not because you know it's just a momentary feeling and in the end, the benefit FAR outweighs everything else.

SpecialK

Sandra - excellent post!  You wrote what I was thinking in my head.

Blueberry4

Hi ladies, my bmx with TEs was Monday and I am home and doing well. I am still on norco for pain. I try not to let the pain get too bad and the norco helps me sleep so I am getting lots of rest. I am taking valium every 8 hours and this helps with the muscle spasms/tightness. The only time I have pain greater than aches or tightness is when I do too much close to med time. Then I would say the pain is sharp, but the norco can get it under control again fairly quickly. I have not needed help with the bathroom since the first day and the nurses were there so it was no big deal. I expected to be wearing a compression bra, but the PS said no. I just have gauss pads covering the incisions. He said this would provide me with greater circulation. Everything looks okay, just bruised and lumpier than expected. PS said not to worry that it will look great when he is done. Overall this experience has been better than expected and not what I feared. I do have four drains and my husband has helped me empty and strip them.  I have found that this should only be done when the pain meds are in full force. My camisole with pockets was too bulkey for four drains so I just safety pin them to the camisole.

sandra4611

Julie, I agree. The mastectomy recovery wasn't nearly as hard as I thought it would be. Not exactly fun, but a heck of a lot better than having cancer lurking in those breasts. Looking back, the things I had the hardest time with were things I didn't know about ahead of time. The things I was prepared for went fine.

You are doing what everyone recommends...staying ahead of the pain. So glad codeine is working so well for you. For those who don't know, T3 means Tylenol with Codeine. I couldn't get medicine bottle caps off by myself or even get the top off my Diet Pepsi. At home I would walk to the refrigerator for orange juice and then realize I couldn't pick up the half gallon container without pain. When you aren't used to being fairly helpless, it's frustrating.

I only needed assistance getting to the bathroom for the first two days of my hospital stay. Trying to unhook myself from a heart monitor, and an oxygen monitor wasn't easy but then I had to figure out how to scoot to the side and stand up, then pull the cord for the IV machine out of the wall (those plugs don't come out easily), manage all the dangling cords, IV lines, and four loops of drain tubing, push the IV stand to the bathroom and push it over the threshold. I'm sure I was quite a sight!  Once in there, my T-Rex arms wouldn't cooperate in getting my pj bottoms up and down quick enough without a lot of ouches. Just the thought of having to do all that in reverse to get me back to bed was exhausting!  All the fluid they give you in the IV during and after the surgery make you have to go pretty often. So for me, having one of the nurses give me hand was wonderful the first two days! Once the fog from the anesthesia had lessened, the nausea had improved, and my pain level was better, I could manage ok.

Blueberry4

Does anyone know yet if they will be having chemo after they heal from surgery?  I got a call from my MO this morning. My oncotype dx score came back a 46, ugh. So I will meet with the MO April 1with chemo soon to follow. It was what I expected since my ki67 was 55, but it was still a downer to hear the score was high and that chemo has  left the maybe column and joined the yes column.

SpecialK

blueberry - take some comfort that your answer is definitive and you are not in the gray area with questions, and potentially having to make your own decision.  This made it easier for me - knowing it was not optional.

sandra4611

Blueberry! So glad to hear that you are doing so well. Your doctor eased your mind about the unusual shape your body is in now. He sounds like he inspires confidence in his patients. Also happy to hear you have a good pain routine and are getting lots of rest. I think I took naps a couple of times a day for several weeks. It takes a while to get rid of the effects of anesthesia.

I didn't have a compression bra or ace bandage either, although some women do. My surgeon said the same as yours, that it could inhibit the circulation. I wore a soft front closing surgical bra which held the gauze pads and did not press on any of the incisions. I hadn't thought about asking what I would wake up with...figured I'd be bandaged up and taped everywhere so it was a surprise to wake up with these funny shaped mounds covered by a pretty normal looking bra.

Those drains are a pain, aren't they? It's great your husband is there to help with them. Happy healing!

sandra4611

Blueberry, just read your second post. I know you suspected you might need chemo but knowing for sure is disappointing to say the least. But as SpecialK said, at least you know for sure now and can move forward. Throw the kitchen sink at it girl!

Juliecc

Blueberry, I'm sorry you have to do the chemo.  I'm not sure if I'll need that or not.  I'll know more about the pathology report hopefully by Monday.  Preliminarily, the 3 nodes he took were negative.  My surgeon said this will be 90% accurate but they need to wait for the final pathology.  He also feels he got clear margins even tough it was close to my chest wall.  

My boobies look wrinkly and weird but I'm sure they will look better after a couple of fills.  The incisions look rough but I'm only 3 days out.  I'm very happy with how things are going.  The meds do make me kind of loopy and sleepy sometimes but that's ok.  Naps are good :-)  Don't worry about the SNB injection it is really only a few seconds of stinging.  Not any worse than getting an iv put in or getting a core biopsy.  It's definitely a relief to finally get this cancer out of my body.  Honestly, I was surprised my nodes were negative considering I've had this lump since at least October and there were a few smaller harder lumps in the area of the tumor.

Happy healing to everyone.  Stay brave and strong!

alisathemom

Hello, I had my BMX on the 10th with immexiate placement of TEs. SN injection did not hurt at all. Woke up with no real pain. I am now home and just taking ibroprophen. No node involvement and have pretty much full mobility in arms. Just thought I would post a more positive experience. 

aviva5675

Some ps say its ok to shower with drains and some say no. Mine was a no, so no shower til 2d drain out after 10 days or so. Seems to be a toss up which ps say which way, but don't be surprised if yours is a no shower dr.  Just got used to sponging off and using cleansing cloths. Didnt really need help from hubby after about 5 days or so.